Road Hog's Ruminations

I miss you, Stacy

2012-01-21T16:21:00.000-08:00

Eleven years ago, the first of two events occurred that I never thought I'd have to handle -- my younger sister died of respiratory distress related to spinal muscular atrophy.

I miss you, Stacy.

Is it really about to happen?

2012-01-05T13:26:00.000-08:00

I just completed my "Application for Degree", a first step to graduating in May.

Now I just need to:

-- complete my application for a Smithsonian Postdoctoral Fellowship by January 15th to work at the Smithsonian Environmental Research Center -- assuming Dr. Denise Breitburg sponsors my application and accepts me as a contributing member of her lab

-- analyze a buttload of data and complete a rough draft of my dissertation by February 6th so my advisor can look it over for me to work more on it

-- defend said dissertation on April 6th and pass my dissertation exam

I can do it. I'm a rock star. *bites nails*

EDIT: Dr. B is interested! Now, just ten days to pull together a research proposal.

Words to the wise

2011-12-11T12:31:00.001-08:00

I received an email yesterday from Nova Publishing asking me if I would like to contribute a chapter to a book they're putting together called Environmental Degradation: Causes, Issues and Management.

*squees*

A book chapter offer? And I haven't defended yet?

*squees more*

I sent an email to my advisor to ask his thoughts. I just hope it doesn't take him a month to write me back because the abstract deadline is January 10.

*squee to the 10th power*

A peek from under the pile

2011-12-06T10:51:00.000-08:00

I've been absent lately -- not just from posting but also from reading on my flist. I want to graduate in the spring, so I need to defend my dissertation no later than April 9, which in turn means I must turn in a draft to my advisor no later than February 9.

Actually, as of last night, those deadlines will get moved up as I purchased tickets for the Celtic Woman concert being given on April 12.

My motivation has been nil. Once I start writing, I move right along. Fortunately, I also have a grant application that wasn't funded that helps me write my introductions, but the materials and methods still need work. I have analyzed data for my 2008 experiments, so I should be done with that damn chapter, but I'm not. I'm so annoyed with myself.

Dad has an appointment in Wichita this afternoon, and Mom is driving him. Ordinarily I would ride along, but I am opting to stay home and take full advantage of approximately three hours of alone time to write.

C'mon D -- let's get this thing banged out.

We're in the money

2011-12-03T09:05:00.000-08:00

The ceremony for the Peter John Loux award was Thursday, 1 December. Both of my parents and one of my best friends attended. I figured they'd read a bio of us -- which is embarrassing enough -- but they made each of us stand at the front of the room while they did. Awkward! As I've mentioned before, I don't see myself as doing anything particularly noteworthy or "inspiring", so watching people make a big deal out of me getting a BS and MS and working on my Ph.D. makes me uncomfortable. As for the disability activism, someone has to do it, but no one WAS doing it.

After, the folks, my friend, and I went to Bella Luna for lunch. I said screw my diet and had hummus and the six-cheese pasta. I requested grilled shrimp on top of the pasta, but it was delivered with grilled chicken. I mentioned this to the waiter, and he said, "Go ahead and eat that, and I'll get you some shrimp too." Bonus!

It was a great day, despite the cold.

And the winner is . . .

2011-11-09T17:24:00.000-08:00

I just received a letter from the Cerebral Palsy Research Foundation that I am one of this year's recipients of the Peter John Loux Award. The award is given "in recognition and honor of an outstanding Kansan who has demonstrated exceptional desire and dedication in overcoming the difficulties caused by physical or neurological disabilities." My friend MF nominated me, and my friends SB and AF and my aunt CS sent letters of support.

I receive $1000 which will go into my "special needs" trust with my Wreck settlement.

Guess I'd better finish setting up the trust.

A Day of Remembrance

2011-10-31T14:16:00.000-07:00

Our modern holiday of Halloween has its roots in the pagan tradition of Samhain (pronounced SOW-en). Samhain is the last of three harvest festivals, celebrating the end of harvest while preparing for the long, dark nights of winter to come. It is believed that at this time of year, the veil between our world and the world beyond is at its thinnest. Rituals to honor and/or speak to those who have gone before us are common. I, like everyone else, have lost family. Due to my disease, I've gotten to encounter Death a bit more often as He has taken most of the friends I met at MDA Camp. To mention all of them would take hours, and frankly I don't have the fortitude to undertake a task of that nature. However, I must mention two, for these deaths are with me daily, always at the edge of my waking thoughts, sometimes even entering into my dreams.

My sister's death caught me completely unaware. She had been in the hospital over Christmas with pneumonia. I spoke with her the day she was released, and I was utterly amazed that she had been sent home. The congestion I could hear in her lungs made ME want to cough, and she clearly didn't have enough strength to cough all that crap out. A month later, her best friend called my brother to say Stacy was gone. Her death was so sudden that Dad requested an autopsy.

The report stated that nothing unusual could be found, merely the expected physical changes consistent with her disability and a slightly enlarged heart. Folks in the family started freaking out -- enlarged hearts run in the family, what about Dawn's and Paul's hearts? We were checked; we were fine.

Years later, I found a report in Stacy's university paper that stated she had called campus police in the wee hours of the morning (around 2:00am) complaining of an asthma attack. She was taken by ambulance to the hospital, she was treated and released, and she was taken home by the ambulance crew around 6:00am. According to Stacy's attendant, when she arrived a couple of hours later to get her up, Stacy stated that she was exhausted. Could she please sleep a little longer? The attendant said no problem. When she returned a couple of hours later, Stacy was breathing but unresponsive. She died at the hospital a short time later.

My sister and I were the best of friends as kids, but as adults it became clear that we were two very different people. Actually, I'm not even sure how true that last statement is. I think we were still a lot alike, but we just took different paths when we moved out on our own. I was studious, trying to make the most out of the scholarships I'd earned and trying to keep my college debt to a minimum. The extent of my "partying" was a group of dorm friends sitting around getting hilariously plastered. I was the obligatory babysitter since I didn't drink. I rarely skipped classes. Stacy, on the other hand, was not too concerned about school. She didn't party, but she was a huge flirt. When the Internet got big, she'd spend all day and half the night in chat rooms. Once, she announced to the family she was engaged to a half Native American man from New Mexico -- she neglected to mention she had never actually MET the dude in person. In her first year of WSU she had more "canceled" classes than I'd had in five years of undergrad and one year of grad school. We fought like crazy. I called her irresponsible. She called me a prude. When she moved to Illinois, we weren't on speaking terms. I'm fairly certain the only reason she came over and said goodbye was because Paul and I were living together; she definitely had more to say to him than me.

Looking back, I know she was going through the same "FREEDOM!" phase that many young adults do. I was thinking then that if she wanted a break from school to stretch her social wings, then she should just stop racking up debt for classes she never attended. I was stuck in the mentality that I was the big sister and I knew better. What a joke.

After Stacy died, our parents and our aunt and uncle went up to IL to clear out her campus apartment. Mom and Aunt Chrys told me later that though our relationship was only in the beginning stages of rebuilding, we were still more alike than we were different. Similar decorating styles, similar leisure reading choices -- we even had the same damn perfume in our bedrooms.

I now regret those last few years of wasted time, that both of us were so stupid and just had to be RIGHT. Sometimes it still hurts, but Stacy has let me know that for her, it's all water under the bridge. She's forgiven me, so it's time I forgive myself.

If my sister's death caught me off-guard and sent me into a tailspin, then my brother's death hit me like a Mack truck. It didn't help that I had been sick with a stomach bug for a week and had just admitted myself to the hospital for dehydration. Most people who know me well know that I'm a pretty cool head in a crisis. It took me ten hours to allow myself to cry when Stacy had gone. With Paul, I lost it. Bad. I even yelled at my father when he tried to calm me down. I was going to pieces, and at that moment I didn't care. The nurse came in with my pain meds, and I went to sleep. I didn't want to wake up. Ever.

Paul had spent 31 days in the hospital to get rid of pneumonia (sensing a theme?). During this time, the chronic pain he'd been suffering for twelve years had gotten so much worse. Dad told me he would be given Percocet, then two hours later Dilotid, then two hours later Percocet, then two hours later Dilotid, and so on, ad infinitum. I know big guys who couldn't handle that regime, but it barely touched the pain experienced by my 41-pound brother. A few days before he died, he told our mutual friend, "I'm so tired. I don't want to do this anymore."

Paul and I were the opposite of Stacy and me -- we drove each other crazy as kids, but as adults we were as close as a brother and sister could be. When he started university, everyone thought he was a biology major because he spent so much of his free time in the lab with me. My fellow grad students made him part of the fold. He knew more about my thesis project than my lab-mates. Together we took a Shakespeare class, an anthropology class, and a fiction writing workshop. I was the one he turned to when he needed help selecting poems to submit to contests. His two favorite nicknames for me were "tree-hugger" and "bunny-lover". He rolled his eyes at my tirades against styrofoam, but he'd use real plates -- at least when I was around. The only difference was political views. He was a staunch Republican, and I was . . . well . . . not.

It hurt me that I wasn't in Kansas when he passed -- one week after getting released from that 31 day stretch in the hospital. He endured more pain and illness than any one person should ever have to. Every night I prayed for his pain to be taken away. The first time I thought of that after he died, I screamed at the Higher, "That wasn't what I meant!" I spent months in a strangely functional form of depression -- I went through the motions of research and interaction with others, but I had absolutely NO emotional investment in anything.

I think the biggest hurt is that he never told me goodbye or gave me any indication that he was OK the way Stacy did. I dream about him, but only rarely. I know my sister keeps an eye on me, but I feel as though my brother just went on without looking back -- which is so much his practical nature. Gah, I sound like such a selfish bitch.

So, this turned out to be longer than I intended, so if you made it this far, let me know and I'll send you some cookies as a reward.

For my sister and brother: I couldn't have asked for better siblings. I have to be honest -- I hate that you left me alone. You gave me strength, and you forced me to see my insecurities. Everything I accomplish in my life is due in large part to you (and our parents). I love you and miss you every single day.

Gimps unite!

2011-08-09T14:37:00.000-07:00

Mom and I are heading out of town tomorrow to attend a disability caucus. We'll get home Friday afternoon or evening. I've never been to one of these, so it'll be interesting. Tomorrow's highlight is a performance by Flame, a rock group made up completely of people with disabilities.

Everyone be nice to each other and share your toys while I'm gone. *hugs*

trumpets sound

2011-08-04T17:16:00.000-07:00

My FA review is finally in print, and my official PDF is saved! Please send me a SASE for your autographed copy. *grin*

Meh

2011-07-21T08:31:00.000-07:00

Hopefully the pain specialist can figure out why I've been having all these new and interesting (she said sarcastically) pains and spasms over the last year, especially in the last couple of weeks. Hopefully it's not autonomic dysfunction resulting from the Wreck, as my GP thinks.

Edit:Turns out, Medicaid doesn't recognize the need for pain management. The place that called me said they would give me their "special self-pay rate" of $325 per visit, due in full at the time of my visit. Oh, and I get to drive 45 miles one-way in a van that maybe gets 15 miles to the gallon, with gas at $3.59 per gallon. Did I mention I'm only getting $672 per month in federal supplemental income -- assuming, of course, that the government doesn't default?

Guess who's not going to get pain management.

Ow! Ow! Oh crap that hurts!

2011-07-12T13:07:00.000-07:00

Over the weekend, I had some HORRIBLE shooting pains in my left foot. On Saturday, the pains hit me every 15 seconds to 5 minutes, and this went on for SEVEN HOURS. I've had a few pains since then, but nothing like Saturday. I went to the doctor today to see if he could help me with it. He's worried that I'm experiencing autonomic dysfunction due to last summer's Wreck. He's sending me to a pain specialist to sort it out. He's also sending me to a lymph-edema clinic because my legs and feet are badly swollen. It would be nice to have more normally sized feet again.

A mark of the despised barbarian

2011-06-26T14:28:00.000-07:00

Being a review of The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World by Robert Garland

On one of my Amazon skims, I was browsing through a lot of disability literature. Most of it is current (i.e., within the last 20-30 years), with quite a bit even going back to the turn of the century. I was clicking "Add to Wishlist" pretty regularly.

(For those of you who don't know, I use my Amazon wishlist not as a way to get folks to buy things for me but rather as a reminder to myself of what I'd like to read one day. Then I look for one or two at a time at the library or order it through inter-library loan.)

So, I was noticing a pattern of disability literature being not more than a century-plus-change old, when this book appeared. Hmmmm, I know about Hephastus (Vulcan to the Romans), the lame-footed god who was the blacksmith of the gods and cuckholded by his wife Aphrodite, but that was pretty much it. Garland went through as much of the sketchy literature and art available to try to piece together how the deformed and disabled fared in Greek and Roman society. Obviously, there isn't much available, and of course, most of it is bad. Naturally there is the tale of Odysseus's dealings with Polyphemus, the one-eyed giant. Aristotle philosophizes on the deviation from the "ideal form". Pliny goes so far as to describe the "monstrosities" of humanity and animals as almost equals. Dwarves and deformed slaves were bought specifically for the entertainment of the elite, and whomever had the oddest, strangest being was envied by his peers.

Depressing as the actual history was, I still found it interesting and informative. The set of 60-something panels in the center of the book was fascinating. I mean, the way the non-disabled portrayed the disabled just fricking slays me! Because of their low, looooow social status, naturally the gimps weren't portrayed in high art with the expensive media, i.e., they weren't carved marble or painted. Sculptures were created of bronze or more commonly terracotta. Drawings/paintings appeared on the cheapest of vases or water urns. The mentally ill/disabled were not exempt, and their portrayal is probably the saddest of all -- grotesque and twisted faces shaped to supposedly reflect the internal madness.

One practice in a particular village was strangely resonant of today -- that of punishing or even executing "scapegoats" (generally the deformed or disabled) as a means of appeasing angry gods. Garland remarks, "The incident tells us much about the universal tendency to heap blame upon the weak and defenceless in periods of acute tension as a way of re-directing frustration and fear." This puts me in mind of the current state and federal budget issues of cutting money to the programs which help the weak and defenseless (poor, disabled both mental and physical, at-risk) in order to redirect constituents' frustrations and fears from looking more closely at the spending habits of those in power. Those in power call these programs "a drain on resources" which just reinforces the stigma.

Wow. I just realized how conspiracy theory that sounded. I've maybe been watching Hodgins too much on "Bones".

This June 7 is much better than the last one

2011-06-07T18:39:00.000-07:00

A year ago today was the infamous Wreck. Aside from extra pain spots and a Foley catheter, I'm pretty much back to normal. Took me a while to get here, but here I am.

Onward and upward!

AAARRRGGG!!!

2011-05-21T11:56:00.000-07:00

The newest issue of Reviews in Fish Biology and Fisheries is out in print, and my article (which went online last October) is STILL NOT IN. What -- the -- hell -- is -- taking -- so -- long?

Day of awesome

2011-03-19T10:04:00.001-07:00

Thunder, rain, hot cocoa, a relatively painless hip, and (so far) totally painless legs. Can the day get much better?

Happy anniversary, Mom and Dad!

2011-03-05T09:30:00.001-08:00

Forty years ago today, they said they would -- and they still do. I love you!

Sleep is elusive

2011-03-01T07:58:00.001-08:00

I was awakened this morning by numerous puppy kisses -- first by Spanky (the four-month-old cocker spaniel who loves to roll around on my head), then by Mairead (the eight-week-old snuggle-icious rottweiler). Not a bad way to start the day, but I'm still so sleepy. I don't even have the energy to be annoyed that said puppies are currently shredding a Ding Dong wrapper that the Spankster got out of the small trashcan next to Dad's recliner.

Ouch!

2011-02-19T11:29:00.001-08:00

If this "cold front" that's moving through the state today is making my legs ache like this, I have a horrible feeling that Spring with all its thunderstorms is going to be hell.

Yay.

English editor is also in my repertoire

2011-02-08T07:54:00.000-08:00

In December, I received a request from a professor in Germany for a copy of my review. He is in the final stages of writing a book on stress ecology, and he wanted my review to help him better understand FA. Quite an honor in and of itself. We've exchanged a couple of emails since then discussing various aspects of the paper, and he has provided me with a couple of papers that I hadn't seen as well as giving me a sneak peek at the intro of his book.

So yesterday I got an email from him asking if I could proofread his 400 page book for English grammar (he is not a native English speaker). In return, he will mention me in his foreword, pay me $2500 US, and give me a free copy of the book.

*passes out*

Gone! Gone! Smeagol is FREEEEEEE!

2011-02-05T13:55:00.001-08:00

Got home from rehab yesterday. Oh, what a relief it is!

Grand total = 7 months, 7 days. Seems like a lot longer.

Pooped

2011-01-30T11:05:00.001-08:00

I am so freaking tired today. Like, down in the bones, my brain hurts, my eyes are filled with sand tired. I have a book on bonobos sitting on the table, begging to be read, but it feels like even that would take too much energy. It's not like I've done anything to warrant being this tired. So, I was in my chair for eleven hours yesterday, but I was even starting to feel this way yesterday. So strange.

Big News!

2011-01-25T12:10:00.001-08:00

I'm going home Feb. 2nd.

*happy dance*

Roger Ebert Returns

2011-01-20T15:55:00.000-08:00

I just read this brief story about Roger Ebert's new prosthetic face. Ebert has lost his lower jaw and his voice to cancer, and now he will be returning to the TV screen to provide movie critiques with a silicone prosthesis and a voice synthesizer. The above linked article has a picture of him with the prosthetic jaw, and this Esquire article shows him before the prosthesis and talks about his cancer battle.

The young disabled in nursing homes

2011-01-07T12:58:00.000-08:00

This article was featured on Yahoo's homepage this morning. The major thing I don't like about the article is that it makes it sound as if PWDs under 65 living in nursing homes is a new phenomenon. What is true, though, is that it is a growing problem thanks to short-sighted, unempathetic, non-disabled politicians cutting funds to home health services in order to keep their ridiculously large paychecks intact. I'd love to challenge these fine individuals (she said sarcastically) to live in a rehabilitation facility -- nee nursing home -- for a month, relying completely on sometimes apathetic workers for every single need, even to give you one of your own cigarettes on a smoking schedule they determine. I don't think they'd make it two weeks.

What Adam Martin says at the end of the article is true: "It makes you feel old. If that's all you're around, that's what you become."

2010 in Review

2011-01-01T15:45:00.000-08:00

As I lay in bed late last night (early this morning) listening to the fireworks and gunshots ringing in the new year, I was momentarily depressed as I realized I had spent more than half the year in rehab. I'd lost my entire summer and fall, and I'd spent my birthday and favorite holiday (Halloween) locked up. My poor, dear Moby suffered an early, untimely, and certainly undeserved demise at the hands of a careless young man.

My body, as though not experiencing enough physical challenges, was busted all to hell, resulting in me being pinned and plated and rodded to the point that I now have more hardware inside me than a Home Depot. I thought of all the rough things my friends have also gone through this year.

But suddenly I thought, "Wait. It's the first hour of a new year, and thinking of the negatives is not the way to start it." So instead, I started thinking about the good things that have happened in 2010, and suddenly I realized that even though so many bad things have happened, some pretty amazing things have happened, too.

March -- My cousin Josh and his wife Kyla welcomed the newest member of their family, Makynna Lynnlee. "Kenya" (a slip of one of her sisters' tongue) is Josh's fourth and Kyla's second.

March -- I was introduced to the group Great Big Sea ("from the tropical island of Newfoundland") via a concert my friend Lynlee took me to.

March -- My friends Jonikka and Erik were married on the Spring Equinox. I was the maid of honor.

April -- I received notification that I had been awarded one of the prestigious Ford Fellowships to help me complete my dissertation.

April? -- My friend Suzanne successfully completed her Ed.D. at UCSD.

May -- My friend Anita quit her job. You might think this would be a bad (maybe even a horrible) thing, but if you knew even half the s--- she had to put up with from her boss, you'd realize how fabulous this is.

June -- My cousin Amanda and her husband Jim welcomed the newest member of their family, Grace Ellen. She is Amanda's first and Jim's third.

July -- I got up in my chair for the first time in a month.

August -- I went with my folks to see Celtic Woman in concert. Fab. U. Lous.

August -- I celebrated my 39th birthday. Many people dread birthdays of this magnitude, but not me. According to the doctors in London who diagnosed me when I was 3, I wasn't supposed to live past 20. Every birthday since then has been a celebration.

October -- My fluctuating asymmetry review -- on which I'd been writing and rewriting for four years and had submitted to three journals -- was finally accepted for publication by Reviews in Fish Biology and Fisheries.

October -- I officially became eligible for the state program "Money Follows the Person" because I had been in rehab at least 90 days. This program automatically gets me paid attendant care at home when I finally escape this joint -- something I've been trying to get since I moved back to Kansas last December.

November -- My friend Marrus married her very own G.I. Joe (term used affectionately) in a "shotgun" wedding as Jay will be deployed very soon. You can see their custom cupcake topper and a picture of their gorgeous selves on Marrus's LJ.

November -- I got to go home for the first time in six months.

November -- My friend Amanda and her husband Roger welcomed the newest member of their family, Kaylynn Lee. Kay was a little early and experienced some respiratory issues, but to my knowledge she is now doing well. She is Amanda and Roger's first.

November -- My friend Anita successfully completed her masters thesis at WSU. She was so amazing.

December -- I was contacted by a masters student in the Philippines and a professor in Germany requesting copies of my review as their universities do not have subscriptions to that journal.

So now, my goals for the year. I really only have two major ones. First, I'm getting out of this rehab hell. Seven months is far too long for someone like me to be locked up, and it's time to go home. Second, I'm completing my Ph.D. It might take me until November, but you can put money on being able to call me Doctor Dawn no later than Christmas. Early notice to my New Orleans tribe -- you are hereby invited to my dissertation presentation and to my hooding at graduation, and we should start planning where to have my celebration. As to that last, there had better be fruity-rum drinks involved! To my biological family and to my Kansas pack -- anyone who wishes/is able to come to either the defense or the hooding is soooo welcome!

Finally, I'd like to thank everyone who has been so supportive of me over the last seven months. Your visits, calls, and emails have really helped keep me sane. I love you all, and I hope your 2011 is filled to overflowing with love, happiness, and blessings in your personal and professional endeavors.

A bit of drabble

2010-12-23T20:25:00.001-08:00

I've been sitting at the computer for almost two hours now, wanting very badly to write but finding my creative brain strangely empty. I decided to read through some of my old pieces to see if my Muse might spark, but so far -- nada. Zip. Zero. Zilch.

I came across this piece I wrote for a fiction writing workshop I took with my brother ages ago. I don't even remember what the actual assignment was, nor do I remember the grade I received (though I do remember it wasn't a bad grade). So, in a fit of insanity, I decided to submit it for perusal. I am not a professional writer because I'm not very good, so please don't judge it from that standpoint. I write for my own enjoyment and -- hopefully -- the enjoyment of my friends. So here you go . . . .

Excrutiating Hour by Dawn
5 March 2003
Summary: A worried sister frets at her brother's bedside. Based on a true story.

I sat near the foot of the hospital bed, listening to the air gurgling in and out of my brother's lungs. He coughed, but it was hardly productive for the effort he put into it. A monotonous tick drew my eyes to the wall clock, its bold black numbers stark against its white face. Two-fifteen a.m. I glanced over at Nicole, folded in on herself in Jacob's wheelchair in the corner. Her breathing was slow, steady, and completely unlabored. She was asleep. I glanced back at Jacob, small and frail underneath the mountain of heated blankets the nurse had brought to keep him warm. His breathing was rapid, shallow, and sounded like he was hiding a locomotive in his chest. He was floating in delirium, one minute seemingly aware of his surroundings, the next mumbling incoherently.

As though sensing my thoughts, Jacob woke with a shake and his fevered eyes met mine. The irises were still his same milk chocolate brown, but red blood vessels stood out alarmingly in the scleras. His increased body temperature had caused more moisture to form, and his glassy eyes were now a perfect mirror that reflected the bars of the bed.

"Michelle." Jacob’s voice was deceptively normal, and if it weren't for the fact that he sounded as though he were drowning in his own sputum, I might have thought he was getting better. His eyes searched the room, but I knew he wasn't seeing the hospital. "Where's the cat, Michelle?"

"He's at home, honey," I replied quietly, but my heartbeat began to pound in my ears. The ice that had been resting around the base of my spine for three days began to creep slowly up into my own chest. I felt my breathing rate increase slightly, but I slowed it again with a little concentration. My fear wasn't going to help Jacob.

The nurse walked in on rubber soles, her footfalls barely making a sound. She carried a urinal in her right hand, and she smiled too cheerfully at my brother. "Do you need to use the bathroom, Jacob?" she asked, and her voice bounced off the walls and seemed to make the Kleenex poking up out of the box flutter.

"No," my brother replied simply and closed his eyes again.

The nurse checked the I.V. bag hanging on its hook, the sides flat against each other after having dumped their contents into Jacob's veins. She gazed down on the sleeping form in front of her, three distinct lines forming vertically between her russet brows. "He's had almost two liters of fluid in an hour," she muttered to herself. "He should have to urinate."

"He's dehydrated," I responded, and the nurse looked at me as the lines on her forehead deepened and her lips thinned. "That's what I've been trying to tell the doctor. That's what our roommate tried to tell the doctor last night when he had Jacob in here." My voice was nearly as flat and monotonous as the ticking of the clock.

Our voices roused Nicole, and she raised her head and rubbed at the creases her coat had made on her cheek while she’d dozed. "Are they admitting him?" she asked around her sleep-thickened tongue.

"I don't know," I responded, never taking my gaze from the nurse's. I raised a brow. "Are they?"

The nurse's eyes softened, and she tried to smile. "The doctor wants to get some x-rays."

My fists clenched, causing my nails to spear into my palms. The muscles of my jaw were knotted and didn't allow the bone to move when my voice came crawling out of my throat. "What about the x-rays from last night?"

"We can't see anything on them." The nurse's pitch had gone up a few notes and she was smiling slightly, and I realized she thought she was being cheerful.

I smiled too, but I had no intention of being cheerful. The nurse knew it, too. "Could it be because he's dehydrated?"

The nurse was saved a response by two radiography technicians and a portable x-ray machine. I hadn't even heard them coming, probably because my blood was roaring as loudly in my ears. One tech, her blond-streaked brown hair cut in a bob under her chin, opened her mouth to ask me to leave, but I was already spinning my own wheelchair away from them and into the hallway. Nicole followed slowly, yawning hugely. She leaned against the wall of small paper flowers, and I felt her eyes on my back as I rolled toward the exit door. I turned sharply and headed back toward her. She was fully awake now, and she said as I approached, "You're pissed."

"You're damn right I'm pissed." My voice hissed through my teeth, and another nurse looked up at me from behind a computer monitor. "Robert had Jake in here last night for four hours, and the moron doctor sent him home. He said it was viral and there was nothing they could do." I stopped pacing and jammed my furiously shaking hands in my armpits. I was suddenly very cold. "I knew I should have come last night. Robert hasn't dealt with this enough to know what to do. He didn't know to force the issue."

"He knew Jake was sick, but he trusted the doctor," Nicole said quietly.

"A doctor who has probably never dealt with a spinal muscular atrophy patient in his entire, short, pathetic career," I snarled, and a nearby intern winced at my comment. "It's pneumonia, I know it is. I had enough when I was younger to know what it sounds like."

"He's been on antibiotics for three days. That's a good thing."

I shook my head, my muscles going suddenly weak. My hands fell out of my armpits and into my lap, and my chin dropped to my chest. "No, it's different this time," I said, and I almost couldn't hear myself. Nicole knelt next to me, leaning in with a hand on my leg rest. I raised my eyes to hers and her image wavered in and out of focus. I realized I was about to cry, and I blinked the tears back into confinement. I inhaled deeply, and ironically enough at that moment the tech in the room with Jacob encouraged him to breathe deeper, c'mon you can do it. I squeezed my eyes closed, hearing the loud gurgle as my brother inhaled for the x-ray, then released his held breath with a weak cough.

I heard the other tech, this one male, mutter, "This is one sick little guy."

"He was in last night," Bobbed Hair responded. "He was bad then, but he's ten times worse tonight."

The door opened and the male tech pushed the machine through. He looked down at me and touched my shoulder lightly as he passed. "Good luck," he said.

I nodded in response, my voice caught in my throat. Nicole patted my leg and inclined her head toward the open door. When I reentered the room, the nurse was still there. Jacob was still awake, and his eyes looked accusingly at Nicole. "You missed the turn for St. Mary's," he stated quite clearly.

The nurse jumped a little, and her eyes went from Jacob to Nicole to me and back to Jacob, fast as a hummingbird on the hunt for nectar. She leaned over my brother's tiny body, still uncovered and starting to shiver, and asked, "Jacob, do you know where you are?"

My brother shook himself and looked at the nurse with a disgusted curl of his lip. "Yes," he responded, just as clearly. "I'm at the emergency room at St. Mary's.” He looked at me with his glassy eyes, seeming to question me as to why he had to deal with this imbecile.

The gravity of the situation finally collapsed onto the nurse’s head. "I'll get the doctor," she mumbled as she practically ran from the room.

Nicole pulled the blankets up over Jacob, and we heard him mutter something about being hot as he drifted back into the haze he'd been visiting off and on for three days. We settled down to wait again, she in my brother's wheelchair, me next to the foot of the bed. Within minutes, Nicole's breathing had slowed and deepened again in slumber. Whenever her body stopped moving, her fatigue won out. At least she was able to rest. At least she was able to block, even for a few minutes at a time, the sound of the train that was slowly destroying my brother's lungs.

I had a flash from years before of my sister Lee, three years old, with her face held closely to one-month-old Jacob's. She was rapidly sucking in air and blowing it out again, and Mom asked her what she was doing. "Breathing for brother," Lee had replied.

Breathing for brother. I watched Jacob's weak rib cage rise and fall ever so slightly and listened to the phlegm rolling over and over inside his lungs. I breathed deeply and held the air in my lungs, waiting until the gas exchange was nearly completed before exhaling again. I repeated the cycle, willing Jacob's respiration to match mine, willing the phlegm to move aside and allow the life-giving oxygen into his bloodstream, but it was no use. Jake's rhythm decided instead to match the ticking of the clock, and the ice finally succeeded in closing its fingers around my heart.

I gots money!

2010-12-10T16:03:00.001-08:00

The grant proposal I recently submitted to my university's College of Sciences requesting $2000 was approved for $1500. I'm very happy that I received something, even if it wasn't the entire amount.

Fortunately, I can write another proposal to the graduate school for more (the $2000 I requested from the CoS was for a subset of fish, not the whole lot), so keep your fingers crossed!

Three years

2010-11-26T21:33:00.001-08:00

Three years. Today, once again, it hit me like a ton of bricks. I sat in my room and cried, hard, for fifteen minutes -- oddly enough at almost exactly the same time that he died. Just when I think the hole in my heart is starting to heal, I find I'm wrong.

I miss you, Pauley. I miss you so much.

Steamed

2010-11-02T12:17:00.001-07:00

Somebody in the voter registration office dropped the ball and failed to send out the mail-in ballots for all the voters registered here at DH&R -- so now I am not going to able to voice my opinion about our next governor, attorney general, or congress-people. You can bet that I will voice my opinion about the irresponsibility of the voter registration office.

ROTD -- Return of the Dawn

2010-11-01T13:47:00.000-07:00

I'm still at the rehab facility healing my broken bones (work in that area is progressing slowly, but it is progressing), but the corporate office had blocked a lot of networking/blogging sites, thus my absence. However, my laptop crashed Saturday, necessitating the need to purchase a new one. I picked out a sweet little number -- a Sony Vaio with 6 GB of RAM, a 640 GB hard drive, and amazing graphics with which to measure my fish heads -- and I decided to splurge on a mobile broadband device so I can do the Internet my way. I feel like I'm channeling my techno-geek brother.

In other news -- my most recent fishy paper has been accepted for publication! After four and a half years, at least a dozen revisions, and three journals, it's finally in! ::D does the happy dance:: It should be published electronically sometime this week, but I'm not sure when it will be in print.

How are all of you?

Still around

2010-09-23T12:21:00.000-07:00

Still at the rehab facility. Still healing, though not nearly as quickly as I'd like.

We now return you to your regularly scheduled day.

Here I am

2010-08-27T13:14:00.001-07:00

Last Thursday (19 August), I had my second ortho checkup. My arm and left leg are healing well, but the plate in my right leg has shifted a half an inch because my bones are so weak. The orthopedist ordered a cessation of physical therapy on that leg and is trying to get me a bone stimulator to help with the healing on my legs. I'm also making a point of drinking a packet of Carnation Instant Breakfast every day for the extra vitamins and minerals -- maybe they will help the healing as well. I will remain in rehab until my bones are able to handle me using the two-piece sling I use for transfers at home (minimum another month).

Furthermore, we discovered earlier this week that my left foot has been sweating in its brace, and so I have a couple of spots in the beginning stages of skin breakdown (skin red but not broken open). I will be getting my ankle x-rayed at some point to see if I even need the brace or if the tib-fib fracture is healing as slowly as the breaks.

I actually got girly on Wednesday and bought a couple of skirts. ::shiver:: I don't think I've bought a skirt or a dress in almost 20 years. It's just that even shorts are a pain (literally AND figuratively) to put on over these leg braces.

OK, I think I may get back in bed soon and get to work on my manuscript revisions . . . IF I can keep my eyes open.

Yes, I'm alive

2010-08-09T13:55:00.000-07:00

For those who didn't know, I was in a car accident on June 7th in which a 20-year-old failed to pay attention to the large red stop sign in front of him, causing us (my parents, Reba, and myself) to hit him at 50-55 mph. Mom bruised her right hand and knee, Dad had a concussion, Reba's sutures from a surgery that morning tore open, and I broke my right humerus and both femurs and cracked my left tibia and fibula. I underwent a six-hour surgery on June 9th to attach plates and screws to my humerus and right femur and a rod along my left femur. Basically, I now have more hardware in me than a Home Depot.

I was in the hospital for three weeks, then I was transferred to a rehab facility where I still am. I get therapy on my arm five days a week and on my legs six days a week. I'm not healing as quickly as *I* would like, but I am healing. Moby (my van) was totaled, which upset me a lot. She was a good van, and she didn't deserve to go out like that. My folks quickly found me a new ride, though -- a maroon-colored 1993 Ford with a working AC. I have christened her the Red Baron.

Isn't life grand?

Received an email this morning

2010-05-12T19:11:00.001-07:00

Dear Dawn M. Allenbach,

We have received the reports from our advisors on your manuscript, "Improving Fluctuating Asymmetry Studies Using Recommendations From a Fish Literature Review", which you submitted to Reviews in Fish Biology and Fisheries.

Based on the advice received, I feel that your manuscript could be reconsidered for publication should you be prepared to incorporate major revisions. When preparing your revised manuscript, you are asked to carefully consider the reviewer comments which are attached, and submit a list of responses to the comments.

. . .

Your revision is due on: 29 Jul 2010

We look forward to receiving your revised manuscript within eight weeks.

With kind regards,
J.N.
Editor in Chief

It's gonna be a lot of work, but . . .

::happy Luta dance::

Mom was right. Third time was the charm!

A New Disability History

2010-05-03T12:17:00.000-07:00

I have four books on disability that I am currently reading through. I had to order these books -- all of them -- through interlibrary loan because neither of the two public libraries nearest me had ANY of them. I think I will have to talk to their acquisitions person about not only not having these particular books but NO disability books at all. NONE!

The book I'm currently reading is a collection of essays called A New Disability History edited by Paul K. Longmore and Lauri Umansky. I've been keeping track of passages that catch my attention for various reasons. Here are ones I've recorded so far:

"The elision of disabled people from the historiography also surely reflects the 'existential anxiety' that disability often evokes. A considerable literature in psychology verifies that the presence of individuals with disabilities stirs dis-ease in many individuals who view themselves as normal. A more recent literature in cultural studies of disability strongly suggests that those nervous reactions stem from more than individual temperament. To a significant degree, they arise from the most basic of modern, and particularly American, cultural values and social training. Americans often perceive disability – and therefore people with disabilities – as embodying that which Americans fear most: loss of independence, of autonomy, of control; in other words, subjection to fate. The culturally conditioned psychological response to disability may help explain disabled peoples’ [sic] absence from historical accounts. That which we fear, we shun.” [Longmore, PK and Umansky, L. 2001. Introduction. Pp. 1-29 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 6-7]

"The natural and the normal both are ways of establishing the universal, unquestionable good and right. Both are also ways of establishing social hierarchies that justify the denial of legitimacy and certain rights to individuals or groups." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 35]

"Just as the counterpart to the natural was the monstrous, so the opposite of the normal person was the defective. Although normality ostensibly denoted the average, the usual, and the ordinary, in actual usage it functioned as an ideal and excluded only those defined as below average. 'Is the child normal?' was never a question that expressed fear about whether a child had above-average intelligence, motor skills, or beauty. Abnormal signified the subnormal." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 36]

Feel free to discuss any of these as you like. I will post more as I gather them

ADAPT Blogswarm

2010-04-27T19:10:00.000-07:00

(for ADAPT's Spring 2010 action)

It’s no secret that state budgets are coming up short all over the nation, but what many members of the general public do not know or are choosing to ignore is that many states are putting an unfair bulk of budget cuts on the shoulders of people who should not have to bear that load – people with physical and mental disabilities. If the proposed cuts to health and social services in Kansas go through, the lives and freedom of nearly 1900 physically disabled alone will be in jeopardy. These are the people waiting to receive in-home services via the Home and Community Based Services (HCBS) program, but the proposed budget cuts in Kansas will force many, if not all, of them into nursing/group homes where they will have no input into many aspects of their own lives. What the legislators are choosing to ignore is that care in nursing/group homes will cost the state 2-3 times more than providing in-home care. They are also ignoring the fact that the majority of Kansans – including those receiving or wanting to receive services – are willing to pay revenue enhancements in the form of a one cent increase in the state sales tax and increased taxation of tobacco, alcohol, and soda in order to make up the budget deficit.

Please allow me to address the legislators directly.

Just for a moment, I’d like for you to imagine our roles were reversed. Imagine yourself in a wheelchair – unable to cook your own meals, unable to get yourself in and out of bed, unable to use the bathroom without assistance. Would you wish to live in a nursing home where every moment of every day of your life is decided for you, from when to get up to what you will eat to what activities you can participate in? Would you want to only be able to leave the facility for medical appointments unless your family came to get you? How often do you think you realistically would see your family? How often could they fit a visit to you into their busy schedules?

Or would you want to live freely in your own home where you can sleep in if you want to or have pumpkin pie for breakfast or wheel yourself to the library for a book or to the store for a soda? Would you like to take accessible public transportation to a movie or a restaurant or grocery shopping? Do you think you might see your family more in your own home?

It all boils down to this: do you want someone to run your life for you, or do you want to freely and independently do everything your heart desires?

I’m willing to bet you’d choose the latter. Now imagine you are facing these budget cuts, and I am your legislator. What would you say to me? Would you want to go on with the current day politics as usual, where each person, politician and non-politician alike, thinks only about number one and everyone else be damned? Or would you hope I can see beyond that status quo, that I can envision a world where people take care of each other? Wouldn’t you be willing to pay one more cent on the state sales tax if it meant you could sleep comfortably in your own bed with your husband or wife next to you? Wouldn’t you be willing to pay a few more pennies for a soda if it meant you could keep your job and remain a contributing member of your community? Wouldn’t it be worth paying a little extra on your cigarettes if you could play everyday with your children or help them with their homework in your own home?

I am more than willing to pay a little extra on my purchases so that I and nearly 1900 others in my same situation can live in our own homes and still have our most basic needs met. I don’t want to live helplessly in a nursing home. I want to finish my Ph.D. and get a job at a university, maybe even right here in Kansas. I want to continue being a contributing member of my community, and I want to help my fellow human beings whenever she or he has a need.

This issue isn’t about Republicans, Democrats, conservatives, liberals, tea parties, or coffee klatches. This is about humanity. This is about empathy. This is about doing unto others as you would have done unto you. It’s time we as citizens realize we are part of something larger than ourselves, that in order for our society at large to function in the healthiest possible manner that EVERY part must be healthy and happy. It’s FAR past time for the disabled, the elderly, the ill, and the abused to be treated with equal consideration, respect, and dignity rather than as society’s trash.

Read more blogswarm at ADAPT Blogswarm, Spring Action 2010 hosted by Nick's Crusade.

Thoughts for the day, and a geek girl squee

2010-04-21T19:07:00.000-07:00

"We all come from the same root, but the leaves are all different."
--John Fire Lame Deer, LAKOTA

"A happy person is not a person in a certain set of circumstances, but
rather a person with a certain set of attitudes."
--Scottish Proverb

See this groovy necklace?

I now have one like it, except the eyes on mine are little clear crystals, the finish is more like antiqued pewter, and the chain goes through a loop on the back. As soon as I paid for the pendant, its chain, and my other Hobby Lobby purchases, I went out to the van and put him on.

Ford Foundation Dissertation Fellowship

2010-04-13T19:09:00.000-07:00

Back in November, you may remember that I applied for a Ford Foundation Dissertation Fellowship. This award is described on their website as follows:

Awards are made to individuals who, in the judgment of the review panels, have demonstrated superior academic achievement, are committed to a career in teaching and research at the college or university level, show promise of future achievement as scholars and teachers, and are well prepared to use diversity as a resource for enriching the education of all students.

Hundreds of Ph.D./Sc.D. students apply every year. Only 20 are awarded. I only just learned how astronomical my chances were.

I GOT ONE!!!

*happy dance*

I was awarded support for one year ($21,000), plus I am expected to attend a Ford Foundation leadership meeting. *falls out of wheelchair* I can't believe I got it.

One more time!

2010-04-05T19:15:00.000-07:00

I just submitted my manuscript to Reviews in Fish Biology and Fisheries. This is the THIRD journal to whom I've submitted this tome, so here's hoping that "third time's a charm."

I woke up too early = SILLINESS

2010-03-23T05:38:00.000-07:00

::Dawn singing along with the CD::

Her hair was green as seaweed
Her skin was blue and pale
Her face it was a work of art
I loved that girl with all my heart
But I only liked the upper part
I did not like the tail

--"The Mermaid Song"

And if the devil would take her
I'd thank him for his pain
I swear to God I'll hang meself
If I get married again

--"The Scolding Wife"

Oh me! Oh my! I heard me ol' wife cry
Oh me! Oh my! I think I'm gonna die!
Oh me! Oh my! I heard me ol' wife say
I wish I'd never taken this excursion around the bay!

--"Excursion Around the Bay"

Quotes

2010-03-09T12:05:00.000-08:00

"To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget."
— Arundhati Roy

"The secret of the Great Stories is that they have no secrets. The Great Stories are the ones you have heard and want to hear again. The ones you can enter anywhere and inhabit comfortably. They don’t deceive you with thrills and trick endings. They don’t surprise you with the unforeseen. They are as familiar as the house you live in. Or the smell of your lover’s skin. You know how they end, yet you listen as though you don’t. In the way that although you know that one day you will die, you live as though you won’t. In the Great Stories you know who lives, who dies, who finds love, who doesn’t. And yet you want to know again. THAT is their mystery and magic."
— Arundhati Roy (The God of Small Things)

Today's good news is . . .

2010-03-05T09:25:00.000-08:00

My cousin Josh's and my cousin-in-law Kyla's new daughter was born at 11:56 p.m. last night. Makynna (muh-KIN-uh) Lynnlee was 8 pounds 9 ounces and 21 inches long. She is Josh's 4th child and Kyla's 2nd. I'm hoping to go visit mama and baby this afternoon.

Also, today is my parents' 39th wedding aniversary! Dad gave Mom a dozen red roses with a card that asked, "How about 39 more?"

Edit: Here's a picture of Makynna, taken by Grandma Shelly.

Poop poop pee doo

2010-02-28T15:11:00.000-08:00

Not feeling so hot today. I'm really wishing I could trade my body in on a better model, one without all the aches and maybe a bit more muscle strength. Just enough to, say, get a drink out of the fridge, make my own snack, comb my own hair, help Mom fold the clothes. That's not too much to ask, is it?

On the plus side, looks like there's going to be semi-homemade rolls with supper.

Yesterday's press conference

2010-02-26T07:24:00.000-08:00

I was the only PWD to speak, and only three others actually showed up. Two news agencies attended. Two. Clearly, we (the people affected by the budget cuts) are not making enough noise. Either that, or our society just doesn't give a damn. I want to believe the former.

The Hutchinson News -- The story starts on the front page. Thankfully, the online version does not have my picture in the story.

Kansas Free Press -- Story here.

PILR's executive director asked me via email yesterday if I would consider testifying in Topeka later this session. I told her "absolutely."

My prepared statement for tomorrow

2010-02-24T15:42:00.000-08:00

Statement for Press Conference, 25 February 2010
Prairie Independent Living Resource Center
Hutchinson, Kansas

I've spent several days trying to figure out what I was going to say to you today. You've heard from the staff here at PILR about how these state budget cuts have and will affect the nuts and bolts of running this organization. You've heard from other people with disabilities about how these changes directly affect them. What can I tell you that you haven't heard already? Well, I can tell you one thing which cannot be mentioned enough.

I'm angry. Very, very angry.

Yes, I understand that our country and our state are experiencing some tough economic times. I understand that a lot of state-funded organizations and schools and such are getting less money all across the board. Isn't it interesting, though, that people with disabilities always take one of the biggest hits? We're in the 21st century. Humans are supposed to be more enlightened than they were 20, 50, 100 years ago. So why are people with disabilities still marginalized? Why are we made to feel shameful because the system has been set up to favor us being shut away in a nursing or group home? Why should we have to be dying or abused in order to get assistance with our most basic needs in our own homes? Why must our freedom be so curtailed? The system as it stands is unacceptable, and further cuts will only make everything worse -- for the people needing care, for the people receiving care, and for the people providing care.

There's a sentence that has bearing here. It's probably one of the most famous sentences in the United States. Unfortunately, because of this sentence's notoriety, I think the words are taken for granted. As I read it, please try to remember that we should hold these words as special in our hearts, because when we forget the true spirit of these words, people as individuals and as groups can be treated unfairly and without due respect, and we dishonor the legacy that our founding fathers laid down for us.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness."

When the state forces us by severe budget cuts into nursing or group homes, it takes away our unalienable rights. Certainly our right to liberty, our right to come and go as we please at any time of day or night, is revoked. Our lives and our happiness are clearly not held in the same regard as people without disabilities. This cannot be allowed and still call ourselves citizens of the United States of America. Kansas, do the right thing, both in an economic sense and in a good citizen sense -- do not cut money further, make better use of your money by allowing us to receive personal attendant care in our homes. Don't marginalize us, liberate us. Let us live our lives and pursue our happiness within our communities. Do not ignore our unalienable rights.

Thank you.

I was on the news

2010-02-23T09:10:00.000-08:00

Many independent living resource centers (ILRCs) in Kansas will be holding press conferences this coming Thursday (25 February) to coincide with a state budget hearing which may cut another $1 million from ILRC services. One of our local TV stations didn't read the date on the press release sent out last week and showed up at my ILRC yesterday. Since I'm one of the 1800 people in my state waiting for services and because my IL counselor knows I'll talk to anybody about improving life for people with disabilities, she called me to ask if I'd talk to the reporter. Mom and I quickly drove to town for the interview. Sorry my hair is a fright -- my little hoodlet is great for keeping my ears warm and mussing up my hair. Isn't Reba exceptionally photogenic?

You can see the video as it aired last night here. Unfortunately, they did not put closed captioning on this.

I'm still going to the press conference Thursday. I'm supposed to prepare a statement, but we'll see if I get called on to read it.

Happy Mardi Gras!

2010-02-16T11:40:00.000-08:00

Happy Mardi Gras, everyone!

*offers King Cake with purple, green, and gold sugar crystals on top*

Good thoughts, please

2010-01-04T08:26:00.000-08:00

With the final transcript being logged this morning and my third letter of reference being uploaded moments ago, my Ford Foundation Diversity Fellowship application is officially complete. Wish me luck in getting it this time. It's for a stipend of $21,000 for living expenses so I can actually be in NO to complete my final year.

Also, if you have an extra thought/prayer to spare, would you ask that the National Science Foundation have pity on me and resubmit my grant application to the "appropriate program"? We received an email on Christmas Eve morning that my grant proposal had been thrown out because it wasn't appropriate for the Division of Environmental Biology program.

My whole dissertation is about how environmental stressors alter the development and reproduction (both biological processes) of fish. Huh?

Looking ahead

2010-01-01T14:59:00.000-08:00

A lot of people use this time of year to reflect on the year that has passed and try to divine what will come in the year ahead. Unless something truly crappy or truly outstanding happened, I rarely remember too much of what happened the previous year. The minutiae get all balled up until I cannot tease them loose from each other. I do not make up lists of praises and lists of rants and post them on tha Interwebz because they have meaning only to me, and I don't want to get into some heated discussion with someone who takes offense to this like or that dislike. I don't make huge, life-changing resolutions because something always happens to prevent their completion.

Every new year, what I promise to do are "little" things. I hold my head up and smile at strangers as we pass on the sidewalk or in the grocery store, even if they look at me like I sprouted a third eyeball in the middle of my forehead. I say thank you when someone helps me with something, even if s/he does it for me every day and knows I appreciate it, because very few people show gratitude for the little things. I try to do the best research I can. I explore my personal spirituality and endeavor to remain patient with those of a more rigid mindset. I make attempts at creativity in a variety of forms such as writing fiction, making soap, making mosaics, or cross-stitching. Soon I'm going to attempt to make my own portable medicine wheel. I try to read widely. I try to read something or someone previously unknown to me. I try to read as often as I can. Following the example of a friend, I will endeavor to keep a list of everything I read in 2010 -- both books for fun and research materials (the latter for my own edification) -- and I will attempt to write mini-reviews of the books in the interest of those who might want to also read something I've read.

So, in that vein, I am off to drink some tea (green tea with jasmine and passionfruit) in an attempt to soothe my sore throat, then I shall return to the further adventures of Sherlock Holmes.

I hope your year is everything you want it to be.

Thank you for being my friend and helping me grow.

Last post of 2009

2009-12-31T17:49:00.001-08:00

Y'all have fun partying. I'll be in bed trying to sleep off this head cold and sore throat.

Happy new year! Remember -- it is illegal to shoot your firearms into the air if you live inside city limits, not to mention stupid.

Time to see if my tea has cooled to "just right."

Leaving in a white van

2009-12-06T20:59:00.000-08:00

Leaving around 10:30 tomorrow (Monday) morning to drive back to Kansas. Will check in when we get back.

And that's that

2009-11-29T19:57:00.001-08:00

I just finished making my four slide Powerpoint presentation for statistics. After I do the five minute presentation on Tuesday, I will be mostly done for the semester. Both of my girls (undergrad assisants) who helped me this semester with all the physical stuff I am unable to do have asked to continue as my minions next semester, and that is a HUGE relief to me. They are both intelligent, driven, and extremely well self-directed, so I know my fishies will be safe next semester while I'm gone. We're going to practice photographing fins this week so they know EXACTLY how I want it done, then at the beginning of next semester they will photograph all the fins and send me the pictures to play with.

On the preparing to go home front, I went through all of my clothes at the beginning of the month and donated a bunch of stuff to the athletic department's clothing drive for a local mission. Over the last two nights, Tracie has helped me go through the closet by my bed, and I've gotten rid of about half the stuff I had stored in there. I still need to go through the kitchen closet (candles, incense, herbs, winter outerwear) and the big dresser (a junk drawer, a Reba drawer, and a linen drawer). Then the BOOKS. That's going to be crazy, my friends. I'm predicting one box of clothes and at least three of books. Think I'm joking? Ask Anita, Jonikka, or my parents about the clothing-to-book box ratio when I moved out of my Wichita apartment to move here. Tuesday is "talk with your advisor" day, Wednesday will find Moby getting two new shoes and an oil change, and Mom flies in Thursday afternoon. We have tentative plans to go eat with two of my friends and go have dinner made for us at other friends' house at some point over the weekend. Also over the weekend, we'll be hauling some of my stuff (bookshelf, table, TV, DVD player, dishes, small kitchen appliances) to Tracie's house in NO East for storage until I come back. Mom and I plan to leave on Monday, to arrive home on Tuesday.

OK, so I'm going to go try to read Twilight now. I promised a friend almost a year ago that I'd read it, and I still haven't gotten up the nerve. Let's face it, the descriptions of plot I've heard have nearly made my brain cramp. I'll try to keep an open mind, but at the first sign of nausea or neuron suicidal behavior, I'm done. There are too many books in the world to waste time on sparkly, emo vamps. Wait -- open mind, open mind.

What is this "relax" of which you speak?

2009-11-20T20:44:00.000-08:00

The Ford Foundation Diversity Fellowship was submitted on 7 Nov. -- two days ahead of schedule.

The poster for the SETAC meeting was emailed to Kinko's on 18 Nov. and finished on 19 Nov. -- it is bright, shiny, all KINDS of sexy in its 40" x 56" glory, and ready to be shown off on Sunday. Can't wait to see the looks on the faces of all those stuffed suits when they realize the chick in the power wheelchair with the dog is the primary author.

The NSF DDIG grant was submitted today -- a whopping hour and a half ahead of the deadline.

All I have left to do school-wise before moving home is make a 5-minute PowerPoint describing some of my data and what statistical methods I used to analyze them, with my presentation being given on 1 Dec. -- maybe I'll get around to it on Monday.

Tomorrow is dedicated to reading a big chunk of The Sweet Far Thing, playing games at MSN Games, a possible nap in my chair, and maybe "Pirates of the Caribbean: At World's End" on USA.

Relaxing. Let's see if I remember what that is.

Message in a CD case. In a drawer. In a backpack. In a . . .

2009-11-04T16:56:00.001-08:00

Little Elena Desserich, a six-year-old diagnosed with brain cancer, hid love notes to her parents and sister all over their house before she passed on. The brief story contains links to the published book by her parents and the non-profit foundation which will receive the proceeds from the book.

What a beautiful little girl with an insightful, wise heart and mind. One of the story's commenters said she was an old soul. I agree -- you can see it in her amazing eyes.

::maniacal giggling::

2009-11-03T10:08:00.001-08:00

I thought this was funny as HELL -- but that might be because I got less than five hours of sleep last night.

see more Lolcats and funny pictures

The worst thing . . .

2009-10-29T18:40:00.000-07:00

. . . about science is the writing. I loathe the writing even more than figuring out how to run the stats. I dislike it mainly because between how much of it I'm having to do right now and all the measuring of fish heads I'm doing at the same time, my already weak hand and wrist muscles are seriously fatigued. It's times like this when I think having voice recognition software would be a good thing.

Cuteness warning

2009-10-21T13:59:00.001-07:00

This reminds me of that baby squirrel Sarah and I found at the cemetery the day after my birthday, only ours was half the size of this one.

see more Lolcats and funny pictures

Boooooooo

2009-10-14T14:03:00.000-07:00

I didn't get tickets to hear Obama speak. ::sad Dawn face::

A US president will be on my campus at the same time I am, and I'll be restricted to watching him on streaming Internet video. From two buildings away.

Obama in the Big Easy

2009-10-12T08:38:00.000-07:00

President Obama is coming to my university on Thursday. I'm trying to register for a ticket to attend, but the form isn't on the website even though it was supposed to go live 35 minutes ago.

If I miss this opportunity because of technical issues, I will be mad.

Thought for the Day, Rejected

2009-09-28T09:06:00.001-07:00

"Love is something that you can leave behind you when you die. It's that powerful."
--John (Fire) Lame Deer, Lakota

In other news, my fish FA review was rejected. They said it didn't fit the scope of their journal, though their description of their "perspectives" articles seems like exactly what I did. Oh well, they gave a couple of suggestions to improve the manuscript, so I'll see what I can do and resubmit somewhere else.

Meet Herr Krumm

2009-09-24T20:11:00.000-07:00

I'd like to introduce you to Herr Krumm, resident of 1000 ppb Atrazine, Fish Room, Computing Center, University of New Orleans. This is the best picture one of my lovely minions (undergrad assistants) has been able to take of the elusive Herr Krumm, which is German for "Mister Crooked," but she was able to obtain a video of him. He's a plucky little fish who doesn't let his gross morpological deformity stop him from swimming quite fast and obtaining his daily TetraMin flakes. What an inspiration to his tankmates!

Thought for the Day

2009-09-16T13:17:00.001-07:00

see more Lolcats and funny pictures

Everything is sent, plus a plug

2009-09-10T18:36:00.000-07:00

I uploaded my FA manuscript, and I emailed the copyright form to the journal -- all yesterday morning, on 09/09/09. Gotta have some luck in that.

Now I move on to more analysis of data I have, I sit down with our departmental animal development guru for developing a staining protocol for my fish, I sit down with our departmental statistics guru (yay, we finally have one!) and figure out how to analyze some other data I have, and I get started on my fellowship app, my grant app, and my SETAC poster.

I'm going to go finish reading The Summer Tree, and I'll flip through my friend Marrus's new book that just arrived in the mail today. Marrus is a one-of-a-kind woman who lives life on her own terms and is obviously comfortable in her own skin, and Lightsurfing is partly about how she got to be that way. She's a fabulously talented artist (see her latest painting) who doesn't receive nearly enough recognition or money. Please, support her talent by purchasing her book here.

/shameless friend plug

No, I did not get a free book for typing that. I paid the $33.95 -- but the butt balloons Marrus drew next to her inscription to me were free. I love my friends! ::grin::

The time has finally come

2009-09-08T14:13:00.000-07:00

I think I've finished all my formatting on my research review. All I have to do is write the cover letter, then I can get this opus submitted for review and hopefully acceptance into Canadian Journal of Fisheries and Aquatic Sciences. I'm going to try to submit it tonight. Any prayers/well-wishes/candles lit/etc. would be greatly appreciated.

Appreciative

2009-08-31T18:13:00.000-07:00

My friend Lynlee sent me a link tonight to Rate My Professor. She had been looking around on the site and came across two ratings of my brother from when he tutored at the English department's Writing Center.

with the lone exception of driving home from a blue oyster cult reunion concert in the rain while the troubled young girl you met at the show sleeps it off in your lap, there's nothing better than a tutorial from paul allenbauch, whose sustained grammatical brilliance even rivals the rockingness of the post-solo feedback in "don't fear the reaper."

And the second, who seemed to really know P:

Paul is the heart and soul of not only matters in english but of humanity as well. He brings it like the hammer of Thor reigning oer the lands thirsting for his unbridled and unmatched brilliance.Dig deep my friends for he may break waves upon the proverbial rocks of your soul but the cool spray will leave you wanting the rainbow left in its mist

All spelling and grammatical errors are the students' own. :-)

I smiled when I read these. I was glad to see there were two people willing to put their appreciation of P's help out there on the Internet. My brother was the self-professed "grammar god" of the writing center, and he loved teaching students about the intricacies of punctuation, verb tense, a good introductory paragraph, and writing an essay that actually addressed the assignment even as he threatened to phrenologize the occasional student for bad comma placement.

I miss him and his empty threats.

Fun Disability Products

2009-08-27T20:02:00.000-07:00

Postcards

It Was A Witch's Curse: Disability by incurablehippie
Create photo post cards online at Zazzle.com

Speedy Chair Postcard by hobble
Browse Disability Postcards

Ignore by specialneedsaware
Postcards created online using zazzle

Wheelchair Whee! by StupidStuph
View other Wheelchair Postcards

The Parking Postcard by hobble
Create Custom post cards online at Zazzle.com

Extraterrestrial Postcard by hobble
Design Post cards on www.zazzle.com

Tracks Postcard by hobble
Make a Full color postcard on zazzle

Not Disabled Postcard by hobble
Design a picture postcard on Zazzle

Prejudge by specialneedsaware
See more Disability Postcards

Keychains

MFH2: I FIGHT FOR DISABILITY RIGHTS KEYCHAIN by MothersFromHell2
Keychains created online using zazzle

Disabled People by goldnsun
Browse other Access Keychains

Nothing About Us Without Us! by incurablehippie
Make key chains on www.Zazzle.com

Beyond by specialneedsaware
View other Multiple Keychains

Mugs

disthis mug by kikodawgz
Make picture coffee mugs on zazzle

D.I.S.A.B.I.L.T.Y. by Disabilities
create your own coffee mug at zazzle

Disability Humor - Mug for disabled girls or women by inamar
Make personalized photo mugs on www.zazzle.com

DISABLED IN SPACE by Sofia_Youshi
See more Youshi design Mugs

More tomorrow.

Random Thoughts When the Rain Makes Me Sleeeeeeeeeeeepy

2009-07-20T09:57:00.000-07:00

"When cemeteries fail" sounds like a great title to a cheesy zombie story.

Yeah yeah yeah

2009-06-03T17:38:00.000-07:00

I know it's been a bit since I blogged, but after I get home this weekend, I'll try to take time to catch you up on the last ten weeks or so. I've just been quite busy despite depression and health issues.

So, I'll be in KS in time for supper on Saturday, and I will be around until July 29. There are pals I'm hoping to see, and you know who you are (especially you four -- Mouse, Psi, 'wela, Lachlan -- who I have not seen since P's funeral). So much to do this trip:

-- get my stupid blood under control

-- finish one manuscript, start two others

-- hang out with my peeps and hug 'em all (especially the 6-month-old nephew) 'til their eyes bug out

-- read a s*** ton of research articles

-- see HP and the Half-Blood Prince

-- get some things fixed on my chair

-- fun, novel-type reading

-- maybe talk Rolando into going to the zoo, especially the one near my house

-- do my yearlies with the cardiologist, the neurologist, the pulmonologist, and the urologist

For now, more library research. 'Night!

So

2009-04-14T12:28:00.000-07:00

My laptop is on the fritz.

I have a UTI.

I have not a lot of money to feed myself this month.

Reba has no monthly flea meds (Surprise! I thought there was one more.), her shots are due, and she needs a haircut in the worst way.

I have a CfH (Cold from Hell) that allows me to hack GGGs (Great Gobs of Goo) all day plus bestows upon me mounds of head congestion.

I'm not getting the fellowship I needed for next year, so without an amazing miracle plan that will give me about $35K, I will have to drop out one year from finishing my degree.

In short, I'm a broke, sick failure.

How is your April?

Vanity Squee!

2009-03-16T19:24:00.001-07:00

My 1999 Environmental Toxicology and Chemistry article has been cited in nineteen other scientific articles.

NINETEEN!!!

That's an average of twice a year. I'm told that's pretty good.

I find myself strangely motivated to work. What an ego boost!

General Exam

2009-01-15T13:18:00.000-08:00

Oh.

My.

Creator.

I was shut in a room with five men two to three times bigger than me for three solid hours having every soft bit of me kicked and poked and gouged and kicked some more and punched and sliced open and packed with salt.

I made it out of the room. I tended to my wounds while my tormentors decided my fate. Would it be thumbs up, be on your way, valiant gladiator, with our thoughts on how to fight better the next time? Would it be thumbs down, thrown to the lions for the violent death of your dreams? An hour later, I knew.

Thumbs up, with caveats.

I now must meet individually with my tormentors. The beatings will continue.

Countdown to GE Day -- 7 days

2009-01-07T05:20:00.000-08:00

::checks clock:: Gads, it's only 6:59 a.m. I've been up for two hours, but it seems like more.

Checklist for General Exam

-- proposal document with figures, tables, and references -- DONE

-- send proposal to dissertation committee -- DONE

-- Powerpoint presentation -- DONE

-- send Powerpoint to advisor for review -- ATTEMPTED (but it bounced back as too big for inbox)

-- practice talk -- TO DO

-- read some literature in a vain attempt to prepare for defense -- TO DO

-- check laser presenter to be sure batteries are good -- TO DO

-- stockpile chocolate as stress reliever -- DONE

-- be nervous -- DONE

-- be extremely nervous -- TO DO

-- take nap -- WANTED BADLY

Countdown to GE Day -- 12 days / Choking / New Year's Lists

2009-01-02T15:04:00.000-08:00

So yesterday I accomplished nothing in the Great General Exam Preparation (hereafter referred to as GGEP), not a single Powerpoint slide nor a single scientific word read. I offer no excuses but laziness.

I've had a cold for about a week, and this morning it tried to kill me. Literally. I woke up feeling hot and moved to push down my blankets. That done, I rolled my head from right to left to stretch my neck muscles. (Warning: potential ick factor ahead) When I did so, apparently I shifted a wad of mucus so that it blocked my airway. Unfortunately, this was stuff that had been sitting for a bit and had started to harden, thus it wasn't easy to get even a tiny bit of air around it. I had an initial second of panic in which a whipped my head back and forth a couple of times, and I must have moved it again a bit because I was able to draw a small breath. I used it to cough against the wad, moving it a little more. Another small breath, my brain screaming WANT MORE, but I kept my cool and coughed again. Small breath, cough, a little bigger breath, cough. I was making horrible mucus-y gagging choking sounds, but it occurred to me that I wasn't loud enough for my dad to hear me in the living room. I thought, "I could die on my own mucus right here." As soon as I thought that, a louder thought came through: "F--- THAT! I'm defending my proposal soon!" I coughed a few more times, and I was finally able to start the clearing your throat action. After an hour (really probably 15-20 seconds), I cleared my airway completely and took a gigantic breath. I coughed a few more times just to be sure, then thanked the Higher I got rid of it. I'll be glad when this cold is gone!

Finally, as the New Year begins, I'd like to share this wonderful insight I received on Wednesday from DailyOM. It really affected me, and I hope you enjoy it.

New Year's Resolutions: The Two Lists
A Message from DailyOM Co-Founder Scott Blum

I was fortunate to spend time with an enigmatic man named Robert during a very special period of my life. Robert taught me many things during our days together, and this time of year reminds me of one particular interaction we had.

"Now that you are becoming more aware," Robert said, "you need to begin to set goals for yourself so you don't lose the momentum you have built."

"Like New Year's resolutions?" I asked.

"That's an interesting idea," he smirked. "Let's do that."

By then I was used to his cryptic responses, so I knew something was up because of the way his eyes sparkled as he let out an impish laugh.

"Tonight's assignment is to make two lists," Robert continued. "The first is a list of all the New Year's resolutions you WANT to keep, and the second is a list of all the New Year's resolutions you WILL keep. Write the WANT List first, and when you have exhausted all of your ideas, then write the second list on another sheet of paper."

That night I went home and spent several hours working on the two lists. The WANT List felt overwhelming at first, but after a while I got into writing all the things I had always wanted to do if the burdens of life hadn't gotten in the way. After nearly an hour, the list swelled to fill the entire page and contained nearly all of my ideas of an ideal life. The second list was much easier, and I was able to quickly commit ten practical resolutions that I felt would be both realistic and helpful.

The next day, I met Robert in front of the local food Co-op, where we seemed to have most of our enlightening conversations. "Tell me about your two lists," Robert said as the familiar smirk crept onto his face.

"The first list contains all the things I SHOULD do if I completely changed my life to be the person I always wanted to be. And the second list contains all the things I COULD do by accepting my current life, and taking realistic steps towards the life I want to lead."

"Let me see the second list," he said.

I handed him the second list, and without even looking at it, he ripped the paper into tiny pieces and threw it in the nearby garbage can. His disregard for the effort I had put into the list annoyed me at first, but after I calmed down I began to think about the first list in a different light. In my heart, I knew the second list was a cop out, and the first list was the only one that really mattered.

"And now, the first list." Robert bowed his head and held out both of his hands.

I purposefully handed him the first list and held his gaze for several seconds, waiting for him to begin reading the page. After an unusually long silence, he began to crumple the paper into a ball and once again tossed it into the can without looking at it.

"What did you do that for?!" I couldn't hide my anger any longer.

Robert began to speak in a quiet and assured voice. "What you SHOULD or COULD do with your life no longer matters. The only thing that matters, from this day forward, is what you MUST do."

He then drew a folded piece of paper from his back pocket and handed it to me.

I opened it carefully, and found a single word floating in the middle of the white page:

"Love."

Countdown to GE Day -- 15 days

2008-12-30T14:58:00.000-08:00

It looks as though my General Exam will be occurring on 14 January. The public presentation (my minimum 45 minute talk about why and what I'm doing) will be at 1:00 p.m. Central while the defense of my proposal will start around 2:15 or 2:30 and lasting as long as my committee wants.

Yesterday, I started putting together the presentation. I like making Powerpoints because I like to put in little pictures and slide titles that are humorous -- not to mention, the PP is easy because the hard part (writing the proposal) is pretty much over. An example -- one of my first slides discusses how environmental degradation can have obvious results such as extinction of a population. Next to the list of effects, I have a cartoon dinosaur with x's for eyes lying on his back in dirt with no vegetation.

Today, I will make more slides IF I can stay awake. So far, I keep falling asleep. Trying to work. Really! ::grin::

MERRY CHRISTMAS!!!

2008-12-25T10:18:00.000-08:00

Just spending a quiet day at home with the folks. In a bit, I'll probably dive into my new Stephen King, but I just wanted to wish you and yours a happy holiday no matter what or how you celebrate.

A good day

2008-12-18T15:48:00.000-08:00

Today I woke up to an email from Lupa telling me she will be editing my submission to the anthology "Engaging the Spirit World" in the next month. To quote her email: "Just from a first look, the essay overall is good stuff! I'm probably going to have you tease out some ideas in more detail, but this is a good first draft."

::happy gimp squee::

To tell the truth, I thought it was a crap first draft that would never even make it to the editing stage, and that would have been all my fault because I didn't give myself nearly enough time to do a thorough job. If she still likes it after the second read/editing stage, I will endeavor to make it the best it can be. Imagine me being published in both the science and spiritual venues. Wow.

This afternoon, I visited with my pulmonologist about my random sleeping episodes. His instinct was that I have sleep apnea which is causing me to not rest properly. He wanted to try to get me in to the sleep clinic to do an overnight sleep test, but he didn't think they could get me in before I have to go back to NO to do my General Exam. Then I brought up something my friend Lance (who also has SMA) mentioned to me a few months ago. His youngest sister (who also had SMA) died a few years back from hypercapnia-induced renal failure (at least, that was my take on what he told me). She didn't breathe deeply while asleep and didn't exhale enough carbon dioxide. The kidneys act to help "scrub" CO2 from the blood, and because it took doctors a long time to catch Lori's hypercapnia (excessive blood CO2 levels), her kidneys became too stressed and ultimately failed. I brought this up to Dr. R because I also breathe shallowly while asleep, and he said that he had been thinking about hypercapnia as well. So, we decided to skip the sleep test and go straight for a BiPAP (bilevel positive airway pressure) machine which would be recommended for correcting sleep apnea or hypercapnia, and I don't have to worry about stressing my poor stone-prone kidneys.

Afterwards, we went to Target. I got Christmas presents for Mom and my niece, and I got fun knee high socks and German Black Forest chocolates (dark chocolate squares with a hint of cherry) for myself.

Altogether, a day of accomplishments.

Non-science Writing

2008-12-08T18:53:00.000-08:00

If you'd like to see a small bit of original fiction I wrote this evening, head over to Deliberations by Diceros to have a read.

Music Monday

2008-12-01T08:51:00.000-08:00

I'm going to apologize right out of the gate to anyone using dial-up to read this blog, because it has as many videos as I could nab and links to others. You see, today's entry is about music and how it affects our moods, and what better way to try to experience what I'll be talking about than to hear the music? Some of these have an emotional tie that you won't be able to experience, but some of these are all about the lyrics.

Saturday night I spent some time alone with my music, really listening to it and letting myself feel the emotions it invoked rather than it just being background noise while I wrote on the prospectus or made dinner. It was a bit of an emotional roller coaster, and I wanted to share some of those feelings since I've gotten good at bottling things up until I explode. I can group the songs into three basic groups: Songs that Remind Me I'm Not As Cynical as I Wish I Were, Songs of Remembrance, and Songs of Strength and Hope.

Songs that Remind Me I'm Not As Cynical as I Wish I Were
I'm not as cynical as I used to be – and I blame it on the Depo! That darned "feel good" hormone progesterone coursing through my body is turning me into a soft girly girl who cries every time she sees the Sarah McLachlan ASPCA commercial on TV. Though I must admit that it's awfully nice to not have a heavy, soul-draining, irregularly-timed period every month-ish. Here are some tunes that played today that get me thinking about having someone special.

If I Were You, Collin Raye - This one's double listed. For the most part it belongs here because it's a love song, but it's not a cheesy, sappy love song (there's a little cynicism!). Collin Raye sings as part of a couple who's partner has just asked "Where we go from here?" He tells it straight up - he doesn't know ("Is what we have enough to last a whole life through? Who knows, baby, who knows."), but he'd like to figure it out ("I won't promise the moon, but I promise to be here."). The song is about real love, not idealized love. He doesn't know what the future holds, "But what if together it gets better every day?" Well, his answer is simple, really - "If I were you, I'd fall in love with me."

Chances Are, , Martina McBride and Bob Seger - This is a nice duet, and the singers' voices are nicely opposing. Seger's is deep and gravelly while McBride's is higher and smooth. They work well together with Seger's piano. A bit of the song play in the Sandra Bullock/Harry Connick Jr. movie "Hope Floats," and its tone fits really well with the movie in that it's about a love you weren't expecting that works its way subtly into your heart until one day you wake up and go, "Well, hell. I'm in love." It's shown in McBride's verse:

I remember clearly how you looked the night we met
I recall your laughter and your smile
I remember how you made me feel so at ease
I remember all your grace, your style
And now you're all I long to see
You've come to mean so much to me

It's a sweet song that I like to listen to over and over.

Shiver, Jamie O'Neal - This song is sexy. It's meant to elicit the physical and describe how a person can turn to goo just with a glance from her partner. A verse and the chorus:

I love the way your whisper slowly, softly lingers
in my ear
You move a little lower, the world starts spinning slower
Then it disappears
Your lips so close we kiss almost
Just barely touch, but that's enough to make me
Shiver
Tremble
I never, no I never once felt so much
It shakes me how you take me
Deeper than I've ever been it's to the core under my skin
I shiver

It's hot!

Songs of Remembrance

There You'll Be, Faith Hill - This song was very popular in the months after my sister died, but I didn't pay too much attention to it for quite some time. One night, I was relaxing before bed and just sitting still while listening to music. This song came on, and I really listened to the lyrics. I thought of how, when we were young, my sister and I had always backed each other up and been each other's best friend. "You showed me how it feels to feel the sky within my reach, and I always will remember all the strength you gave to me. Your love made me make it through, oh I owe so much to you. You were right there for me." I never truly recognized that I had learned a lot about inner strength of my little sister, but I suddenly knew while listening to this song that I hadn't learned enough. With the last lines of the chorus -- "I'll keep a part of you with me, and everywhere I am, there you'll be" -- I promised to keep my sister's strength and optimism with me, especially when it seems all in a situation is lost.

No Frontiers, The Corrs - For my brother's funeral, I made a CD of some of his favorite songs to play while folks gathered for the services. We finally figured out how to make the church's sound system work right before the services began, so the only song that got played was this one that I picked for when we all left the church for graveside services. This was one of our favorite songs when we lived together, and we often played Mary Black's version from a Celtic CD. When Paul discovered The Corrs years later ("It's a group of three hot Irish chicks and their brother" was how he described them), he often commented that he preferred their version over Black's.

In your eyes
Faint as a singing of a lark
But somehow this black night feels warmer for their spark
Warmer for the spark
To hold us ‘til the day when fear will lose its grip
And Heaven has its way
Heaven knows no frontiers
And I’ve seen Heaven in your eyes

My brother moved past any insecurities and fears he may have felt and lived a good life. Would that everyone could.

Faithfully, Journey - I went to the same Muscular Dystrophy Association summer camp from age eight until age twenty-one, and I made some of my best friends there. Every year we had a talent show, and after the show we had a concert from the Airheads, our in-house air band made up of mostly male staff members and a couple of boy campers. We all acted as if we were at a big time concert, screaming and throwing ourselves at the "band" members. It was great fun. The Airheads specialized in "covering" REO Speedwagon, Bryan Adams, and Journey, and every year they performed "Faithfully." This song always puts a smile on my face, and sometimes it makes me cry, because it reminds me of good friends.

Songs of Strength and Hope

If I Were You, Collin Raye - I know I mentioned this song already, but it has two great lines that I need to print and put up near my home and lab computers. "If I were you I'd promise to live life for all it's worth, take all that you've been given and leave your mark upon this Earth." This is what I've been trying to do all my life. I've been trying to push through the stereotypes of disability, to show people (including some in my extended family) that a person in a wheelchair can contribute more to her/his community and the world than having a nice, safe office job. Please be aware that I am not down on office jobs. That's just not what I've been called to do. I'm a scientist, and I refuse to let bad dreams of being "fired" by advisor scare me off.

I Will Be, Lila McCann – This whole song is about believing in yourself, having confidence in yourself, and reaching for as high a goal as you dare. I don't think I can say any more than that. There's no video here, but you can hear the song at least.

I will be here, I will be strong
I'll face my fears when the night is long
And still go on
I will be brave, I will be bold
Follow my faith to a higher road
And I'm not there yet
But I will be

One task down

2008-11-28T19:42:00.000-08:00

I submitted the Ford Foundation Diversity Fellowship application at 9:13 p.m. Central, leaving me 47 minutes to spare. I'm really taking a chance with this thing because their focus is ethnic diversity and working in an ethnically diverse space. I have, and I do. Hell, our lab personnel at the moment represents five countries among eight people. I played up that plus the fact that I'm in a wheelchair and only 30% of PWDs in the US are employed and many of those near the poverty line. I also banged on about how one rarely if ever sees a PWD at a scientific conference. The last lines of my personal statement:

"Rarely are PWDs seen in the classroom or laboratory, and almost never are they seen at scientific conferences. I want to change that. I want to be a researcher who does great work that she presents at conferences. I want to be a professor who helps all her students to learn no matter what their backgrounds are. I want to be a mentor who shows by example of her life that a person can do anything s/he wants. I have worked within my own status as a minority to earn scholarships, two degrees, good employment, admission to a Ph.D. program, and a past fellowship; I want to help others have the same successes."

Hopefully they'll give me one of their 35 fellowships.

Now to finish the prospectus and the manuscript -- the latter of which I still have not gotten back from my advisor who said he'd give it to me last Monday.

Sadness and Gladness

2008-11-26T11:06:00.000-08:00

I've spent the better part of this month working hard on my manuscript, a fellowship application, and my prospectus. Two are close to completion and the third will be in short order. I've been doing all this work wearing a blanket of depression because today is the one year anniversary of my brother's death. I have days when I'm OK, other days not so much.

For the sake of brevity (because I keep falling asleep due of bad sleep last night and because I need to work on the fellowship that's due Friday), I will say only this for the time being:

To all the readers of Beth's blog who came over here to offer sympathy, empathy, and support -- I can not say thank you enough, and I am humbled by your kindness.

To the Three Musketeers (my new nickname for certain Canadians and their very own park ranger) -- I received your package yesterday, and I cried at all the love sealed up in that box. I never could have thought it would hold so much. You're all going through so much right now that I'm amazed you can find the time/energy to put together such a sweet and loving surprise to help alleviate part of my grief. Thank you.

Attention Downing Street!!!

2008-11-17T13:03:00.000-08:00

Thanks to Mark at The 19th Floor for the head's up, er . . . for pointing out, um . . . for mentioning this technique for ratifying the UN's Convention on the Rights of Persons with Disabilities.

Birthday Buddies

2008-11-11T14:12:00.001-08:00

Happy birthday to my most wonderful mom who is 55 today. I called her at a little after 0700 this morning to sing "Happy Birthday" in my I-just-woke-up-two-minutes-ago voice. Yeah, it was a Grammy winner.

Welcome to the world, Gabriel Alexander! Jonikka left a message on my voicemail about half an hour ago to tell me her and Erik's son had been born at 1:11 p.m. on 11-11. I can't wait to see that natal chart! ::grin:: You're coming into the world at a very interesting time, little one. I can't wait to meet you in person.

Two days of Halloween

2008-11-07T12:44:00.000-08:00

Aaarrrrrr! These are from the 30th. Costume put together with stuff I already had.

Front:

Side, to show off my piratey hair tie:

Look! It's a Hummer! It's a tank! It's Supergimp! From the 31st. Thanks to Sarah for making the shirt and to Kim for loaning me my curtain-cape.

Check it out

2008-11-06T09:31:00.000-08:00

You have to have to HAVE TO see this photo.

MEH

2008-11-02T13:13:00.000-08:00

And that's all I have to say.

At least folks have to wait for a request

2008-10-17T09:05:00.000-07:00

From Kay at The Gimp Parade, this funny vandalized sign.

Now I have images of drooling, hungrily grinning ABs with cutlery stalking PWDs dancing in my head.

Not disability related, but folks have asked/wondered

2008-10-14T12:30:00.000-07:00

In response to questions and comments on Beth's safari post, I offer you

RHINOCEROS PORN!!!

Diceros bicornis, black -- Please note the pointed upperlip.

Ceratotherium simum or Rhinoceros ceratotherium, white -- Please note the square upperlip. The lips are the easiest way to tell them apart other than size.

Rhinoceros unicornis, Indian or greater one-horned

Dicerorhinus sumatrensis, Sumatran or hairy

Rhinoceros sondaicus, Javan

Lots of good, concise info here.

Remembered in Bronze

2008-10-13T12:34:00.000-07:00

Here's a case in which I doubt my friend/sister Beth would say, "Screw Bronze!"

Professor Stephen Hawking will have a bronze statue cast in his honor and placed near his office in the Cambridge University Centre for Theoretical Cosmology. The artist has not given a date for when the ten foot statue will be finished and set.

I don't understand how there are people who don't know what strides this man has made in science. Did you read the comments section of the article? I present for your shock the first commenter, Mr. Keith Sloan -- "I wish I had a better understanding of what Stephen Hawking's has actually achieved. Okay there is theory of Hawking Radiation with Black holes, but I thought it was unproven and some experts completely be-little his maths/calculations. Stephen seems totally over rated when compared to say Newton."

A) I'll be nice and ignore your grammar (e.g., the possessive in the first sentence).

B) Not all scientists agree with each other, Mr. Sloan. In fact, your precious Isaac Newton had his deterrents (e.g., Robert Hooke, the father of microscopy and the man who coined the term "cell"). Half the fun of science is coming up with new, radical ideas, and just because Dr. Hawking's hypothesis is still being discussed does not mean he's overrated. I figure if you're going to put yourself on a first-name basis with one of the greatest minds of our time, the least you could do is be a bit more polite.

Or how about Mr. Ben Cossey who cuts to the chase: " . . . he's done nothing note-worthy and i find it a little insulting he gets a statue."

A) "I" is capitalized.

B) If he's done nothing noteworthy, why is he paid to travel the world to speak? Why did the Cambridge students set all this in motion? Speaking as a former university instructor and future university professor, there is no greater honor than to be told by a student that you are an effective educator. And I promise you, if you say he's getting special attention because of his disability, my 300+ pound wheelchair with my 130ish pound fat ass in it may just show your feet or knees some special attention.

Congratulations, Dr. Hawking. Thank you Cambridge students and Ms. Shepherd.

It's been a while

2008-10-12T14:12:00.000-07:00

Well, life goes on -- even when you lose the majority of your baby fish to a power outage brought on by a hurricane. You get frustrated, you get mildly (or not so mildly) depressed, but you just keep plugging because the alternative -- the big "Q" -- makes you feel like you're going to throw up.

So what have I been up to? I've been analyzing hatching data collected by my assistants which is at times a bit confusing to figure out. I've been working on an essay about how scientists can actually in fact be spiritual that I will submit for consideration by an author who is putting together an anthology on totemism and animism. I need to be working harder on it as it's due on November 1st. I also need to be working harder on my prospectus, the presentation for my General Exam, a fellowship application (since I probably won't be finished by next summer with this latest setback), and a poster abstract for a conference in the spring. The fellowship application and the poster abstract are due by the end of November.

I do my best work under stress.

The Lucky Mutant

2008-10-01T12:44:00.000-07:00

Check out this video posted by Mark Siegel at The 19th Floor about a guy with spinal muscular atrophy.

Certain little things about this guy reminded me of my brother. I almost started to cry.

EXCELLENT!!!

2008-09-26T09:21:00.000-07:00

Congress passed the ADA Amendments Act! I hadn't been watching this lately because of all the stuff going on in my mundane life, but thanks to The 19th Floor's link to Cristobal Joshua Alex's blog, I am a bit more up to date. Thanks, guys!

Wow! Really?

2008-09-19T12:29:00.000-07:00

According to The Telegraph, Stephen Hawking is considering leaving Cambridge for Ontario. It's merely a consideration, but maybe it will reopen the eyes of British funding agencies if they might lose one of their most amazing scientific resources.

I for one hope he does it. It would make it easier for me to hero-stalk him if he's on THIS side of the pond.

Reading another article from last year about Dr. Hawking's 65th birthday, and a photo caption reads, "He was struck down by motor neurone disease when he was 21 and given a year or two to live." He was not struck down. He brought physics to the non-physicist. He won a Putlitzer Prize. He's taught people with severe disabilities a thing or two about keepin' on. He was not struck down.

ADAPT Blogswarm, Day 4 -- Press Release

2008-09-17T08:09:00.000-07:00

For Immediate Release
September 17, 2008
For information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org
www.duhcity.org

50 Arrested as ADAPT Takes Affordable, Accessible Housing Crisis to Congress

Washington, D.C.---From their base at "DUH City", groups of ADAPT activists fanned out on the Hill to hit congressional leaders who have responsibility to help solve the housing crisis for low income people with disabilities. Visits to the offices of Rep. Barney Frank (D, MA), a longtime leader on housing issues, and Senators Chris Dodd (D, CT) and Richard Shelby (R, AL), the Chair and ranking Member of the Senate Committee on Banking, Housing and Urban Affairs resulted in a total of 50 arrests.

"Our first stop was to see Rep. Barney Frank," said Diane Coleman of ADAPT in Rochester, New York. "ADAPT has been in talks with him over the past year, and early on he told us in no uncertain terms that he could get 500 housing vouchers from HUD that would be targeted to free people with disabilities who live in nursing homes and other institutions. He repeated that promise for months, and we kept trusting his word, and then one day he suddenly says he can't help us. We were also working with him to get funding that pays for segregated housing redirected to support integrated housing and more vouchers. Sen. Frank arranged a hearing on this funding, and not only did he not invite any people with disabilities to testify, he didn't even notify us about the hearing. So, today, we decided to confront him on his broken promises and bad faith."

Shortly after 13 ADAPT members entered Franks' office, he ordered staff to have them arrested, refusing to even discuss the ADAPT concerns, or strategies to address the housing crisis for low income people with disabilities trapped in institutions for lack of affordable, accessible, integrated housing.

ADAPT went to the offices of Dodd and Shelby because HUD and housing fall under the purview of their committee. Sen. Shelby declined to work with ADAPT saying, "I don't help people who can't help themselves." There were 19 arrests made in Shelby's office. An aide to Sen. Dodd spoke with ADAPT, but declined to put her remarks on paper after indicating she might be willing to do so. ADAPT conti
nued to wait for the written statement, and eventually nearly 25 people were arrested.

"The TV is full of news about the bank crisis, and the mortgage crisis, and the need for candidates to appeal to middle income people," said Cassie James, Philadelphia ADAPT organizer. "Meanwhile, people who live on disability benefits, and people who are trapped in nursing homes because of no housing are being held hostage while the government bails everyone else out. Rent has gone up so much, it's higher than many monthly disability benefits. Not only do us younger people with disabilities need affordable, accessible housing, older people need it, too. This is a crisis, and we need help to solve it."

ADAPT has been in D.C. since September 13, erecting DUH City, a tent city, on the plaza outside HUD headquarters to bring attention to the situation of the people who have been ignored in this election year- low income people with disabilities. The crises with the economy and housing extend well beyond the middle class, but the Presidential candidates and their parties have seemingly forgotten that fact. Not so, ADAPT.

ADAPT Blogswarm, Day 3 -- Press Release, DUH City Times Issue 2, and News Video from Virginia

2008-09-16T09:28:00.000-07:00

For Immediate Release
September 16, 2008

For information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org
www.duhcity.org

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

Washington, D.C.---ADAPT wasted no time challenging multiple policymakers on the housing crisis for persons with disabilities who have low and extremely low incomes. After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octonagerian Barb Toomer, ADAPT organizer from Utah."The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's20longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.

"The federal government is sending stimulus payments to middle class workers, and is providing economic relief for the mortgage crisis, and maybe even the bank crisis," said Dawn Russell, Denver ADAPT. "What about all of us who live on fixed incomes? If we can't afford the cost of housing, we'll end up on the street or being forced into nursing homes and institutions. What are the federal government, Congress, and the presidential candidates going to do to help us with our housing crisis?"

In its platform, ADAPT is asking for:
-- 5000 new housing vouchers per year for 10 years, targeted to people transitioning out of nursing homes and other institutions
-- Twice as much funding for the construction of new housing stock that is affordable, accessible and integrated
-- Policies and procedures to track the new vouchers to assure they remain targeted to people with disabilities when the original user becomes ineligible or no longer needs the voucher
-- People with disabilities who reside in institutional settings to be recognized as "homeless."

ADAPT's DUH City will remain in operation twenty four hours a day until Thursday, September 18. The DUH City Times will be delivered daily to every member of Congress, and there will be daily DUH TV coverage on You Tube. Background information, real stories of real people and photos can all be accessed at www.duhcity.org.

DUH City Times -- Second Edition -- September 16, 2008

On site at DUH City - A Monday Night Recap

Three AM

Last night at the big meeting, ADAPTers were shocked to find out
that they had to be in line at FOUR AM today ! We buckled down however, knowing that there had to be a pretty damn good reason for getting up that early. So we finished our day’s business, went to bed, and started getting up as early as one and two am…

My roommate tapped me awake at 3 am and we leaped to action. I took a peek outside and ADAPTers were already swarming the patio below. We were downstairs by 3:45 am, and as usual with ADAPT, it was “hurry up and wait” as the line formed up. Finally, around 4:30 or so, we began silently heading out.

Luckily, our target destination was only two blocks away! That’s right, HUD. As folks streamed in to ring the plaza and our logistics team swarmed in with vans and equipment, Operation DUH took effect. We have set up several dome tents to house our equipment and teams such as media and food. We are calling this all DUH City and we even have a website - www.duhcity.org!

It took us maybe 20 minutes to get our basic stuff set up and we were complete within an hour. We have five big blue dome tents set up, which is amazing. Folks chanted their guts out till 5:30 am, when we had a roster of speakers discuss why affordable, accessible, integrated housing is important. Mike Oxford said, “If Congress set up housing as fast as ADAPT, our problem would be solved!” We heard from many who have been forced into nursing homes or being homeless because of the lack of affordable, accessible, integrated housing. Our goal in being at HUD is to get politicians and federal agencies to support our housing platform. The police said they wouldn’t arrest anyone if we let visitors and employees have free access. Sometimes we are accommodating and we immediately drew a sidewalk onto our tent city—hence no arrests at Duh City.

10:30 AM

We just finished a big rally where folks talked once again about how important housing is. We also passed out the first copy of this newspaper and a team of folks are now in the process of delivering copies to every office on the Hill. Bloggers are now actively following our news and Twitter is alive with text alerts about the action. Three color groups have departed for missions unknown. The other color groups are holding down the fort at DUH City. Some are taking brief naps. The atmosphere is very relaxed as we save our energy for whatever we have to do next.

2:30 PM

The green color group came back and reported that, under heavy police watch, they visited the Democratic National Committee headquarters. They spoke with staff and a representative of Obama’s campaign, who accepted copies of the platform and promised to pass them along.
They also said they supported the concept of affordable, accessible and integrated housing and would try to drop by to visit DUH City.

It also turned out that the red and yellow color groups went to McCain’s headquarters in Crystal City, Virginia. At the time of this writing, it is reported that several ADAPTers are inside, and a few folks have been sending cell phone pictures of conflict inside the volunteer area.

Meanwhile, back at DUH, the atmosphere picked up once we heard the exciting stories brought back by the action teams. Johnny Crescendo has entertained the crowd a few times, we have done some street theater and we have done many, many rounds of chanting. We expect to be here for quite a while longer and are excited to hear back from our red and yellow McCain teams!

3:20 PM

We hear from our people that ADAPTers are now being arrested at McCain’s office and that the police are being really, really rough. We know our people are strong and we await word of the final arrest count. It is a crying shame that a presidential candidate’s campaign would rather arrest poor people than work to find solutions to the lack of affordable, accessible, integrated housing.

Stay in Touch by Amber Smock

This week, ADAPT is getting the word out about housing in several new ways. In addition to our press releases and contacts, we are keeping up withpeople via the digital world. We have a website devoted to this action at www.duhcity.org, and no less than 37 bloggers at press time are involved with the National ADAPT blogswarm. Folks who love text messages can stay abreast of our doings via NationalADAPT on Twitter, a service that allows users to send brief messages and pictures to one another in real time. A posse of ADAPTers are also delivering the DUH City Times to every Congressional office on each of our action days. That’s right, we are dropping off the news at all 535 politicians’ offices on the Hill! We’re all fired up to bring you the news so we can work together to FREE OUR PEOPLE!

Moreover in putting our money where our mouth is about accessibility we also have large print and audio versions of the newspaper. Call us at (801) 347-0370 or email us at jcostley@sprynet.com to request one of these alternative versions. In addition, keep an eye on www.duhcity.org for postings of DUHtv, which will have frontline reporting from real live ADAPTers and will also be captioned.

Finally, we have Spanish language outreach efforts, because el pueblo unido nunca sera vencido! For more information, check out www.duhcity.org

Three Strikes: No Housing for You By: Amber Smock with Lopeti Penima’ani

“Without affordable, accessible, integrated housing, I would be homeless,” said Lopeti Penima’ani of Salt Lake City ADAPT. “I actually was homeless until I could find an affordable place.” “In Utah, to get an apartment we have to have first and last month’s rent, plus a credit check. I didn’t have the first and last month’s rent, and my credit was all over the place. With all three strikes, what choice do you have?”

Affordable housing can be a life or death decision for too many of our people with disabilities. Having to face this decision is a violation of our human rights. We need significant action by lawmakers and HUD to make affordable housing for all a reality, but this change needs to happen in partnership with groups like ADAPT. Lopeti also pointed out that the work of disability rights activists has paved the way for real change. “Because of the Disabled Rights Action Committee (DRAC), about seven years ago an apartment complex became accessible. With subsidies it also became affordable and now more people with disabilities live there.”

Housing for All: An Advocate’s Vision By Amber Smock with Beto Barrera

Beto Barrera, a Chicago ADAPTer and the Housing Team Leader for Access Living, has been at the forefront of the housing struggle for people with disabilities for many years. He and his team work for housing policy change at the local, state, and national levels. He is committed to the vision of affordable, accessible, integrated housing. We sat down for a brief talk about the separate parts of that vision.

Affordability

It’s no secret that our people, for the most part, are broke. “Seventy percent of our people are unemployed,” said Beto. “That’s why HUD and the Centers for Medicaid Services (CMS) need to work together to create availability of affordable housing. The cheapest studio is $500 a month.” In addition, the amount of rent you pay per month does not reflect the real cost of what it takes to live in your own place.

When you move into a new place, you have to have a security deposit, plus buy any furniture or equipment for your new home.

Accessibility

The lack of accessible housing is rooted in historic cultural attitudes towards peoples’ place in the world. “Housing designed with steps is based on a European and Middle Eastern cultural heritage,” notes Beto. There is a classist element to a world built on stairs. “Poor people used to live in shacks, so rich people wanted to be on stairs to raise themselves above the poor people.” These days, architects and builders justify the use of stairs by citing the possibility of floods. However, as we saw with Hurricane Katrina, floods hit all homes, stairs or no stairs. The problem is compounded by architects being afraid to offer accessible building designs to developers, because developers are reluctant to accept designs they think will not sell. “It’s very hard for them to get out of the box,” said Beto. “It’s a matter of changing attitudes.”

The progressive architects and developers are able to use the disability community as a marketing tool. They realize that a lot of people with disabilities havemoney to spend and design for our market. However, access can still be thwarted by the actions of landlords. Beto cited the example of a Chicagoan with a physical disability who uses a manual wheelchair. This man visited an apartment building with about 30 to 40 units, but was told by the landlord that there were no units he could rent but that he could refer him to accessible housing. He wrote out the name and contact info, and it turned out to be a group home. The Chicagoan filed a complaint and, working with advocates, eventually won a $15,000 settlement against the landlord.

Integration

Why is it so hard to create real communities where all kinds of people live together without segregation? “People see people with disabilities as a commodity, a money maker,” said Beto.

Beto made an excellent point when he said, “People with disabilities don’t live in housing, they live in programs. Why? Because it’s profitable. We are living in government sponsored segregation because it’s profitable.” Clearly, the government and our people need to work together to create a change in perception. There are serious problems, however, because our government does not protect the interests of all people. “Our government works for rich people,” said Beto. “This is why we have segregated housing. We know that it’s cheaper for a person with a disability to live in the community.” Instead, the rich get richer off institutions and nursing homes. “Rich people want to continue making money, so our government is protecting those people,” he said. In a true democracy, the voice of each person would matter, but what we are dealing with is a system where a few make choices for the many, where the rich collect money and the poor get poorer. This is why ADAPT is using our people power this week to get the message to lawmakers that we must work TOGETHER to achieve afford-able, accessible, integrated housing.

A BAD MYSTERY BY: JERRY COSTLEY

Everybody loves a mystery, right? Not necessarily, not when it involves flouting congress’ intent and leaving more persons with a disability needlessly without housing. This particular mystery began when Public Housing Authorities (PHAs) and HUD assisted housing providers began implementing “elderly only” restrictions that eliminated housing options for many individuals with disabilities—in fact, HUD’s own records indicate that over 500,000 living units have these restrictions and more are being added every day. Concerned about this tremendous loss of housing, Congress created 50,000 “disability only” vouchers from 1997-2000. This was a tremendous relief to our housing shortage. However, the relief was short lived. Every time an individual with a disability would move out of their newly acquired housing, the PHA would “roll over” the voucher to someone without a disability and our community would suffer a further erosion of our housing.

Again, Congress intervened, and from 2001-2004, Congress directed HUD to in-sure these housing vouchers remained with persons with disabilities when they rolled over. Instead, HUD’s instructions to the PHA’s are that these vouchers are to go to whoever is next on their waiting list.

In 2006 ADAPT began a series of protests against HUD that resulted in then Secretary Alfonso Jackson researching to find out how many of our vouchers had been lost to their flouting of Congressional intent and our critical needs. Secretary Jackson also agreed to finally issue the long sought letter to the PHAs instructing them to cease giving away our vouchers. After much pressure, we got the letter. Unfortunately, Secretary Jackson was not prompt at keeping his word and was sacked before we could hold him to locating and restoring our lost vouchers.

How many vouchers have been lost? No one knows. Can they be reclaimed? No one seems to know. How could HUD flout Congressional intent for so many years? Therein lies the mystery. Certainly Congress is not going to replace them any time soon with no guarantee that they will remain in circulation for people with disabilities.

Part of ADAPT’s demand in our housing platform is that HUD make good on its promises to locate and restore these lost vouchers. Part of our housing crisis is the result of economics. Part is inherent with the difficulty of finding accessible housing. We simply don’t need to add an additional part that is the result of HUD’s willful disregard of Congress’ intent and of our critical needs.

Please join with us in putting whatever pressure you can on HUD to make good on their obligations to people with disabilities!

http://www.wusa9.com/news/local/story.aspx?storyid=76105&catid=158

ARLINGTON, Va. (WUSA) - It's an issue millions of American families struggle with: Can you afford to take care of an aged or disabled loved one in their own home? Or do you have to put them in a nursing home to qualify for government help? It may be the next big battle on the Presidential campaign trail.Both the Obama and McCain Campaigns support the right of the disabled to choose whether to live at home or in a nursing home. But Sen. McCain opposes a Senate bill designed to change a system that disabled advocates say pushes them to spend the rest of their lives in an institution.

Arlington Police did their best to protect Senator McCain's national headquarters. Dozens of disabled advocates from across the country rushed the building in Crystal City -- and police ended up arresting nearly a dozen for trespassing.

"We don't want no houses like he has. Seven houses. We don't need anything fancy. We're asking for an apartment," said protestor Cassie James.

The activists say Medicaid WILL pay for their care in a nursing home. But WON'T pay for them to have a health aide at home. "All we want to do is level the playing field so people will have a choice," said activist Rick Knight.
Sen. McCain says government living assistance for the disabled should NOT mean "perpetual confinement to an institution." But he also says the bill supported by the activists is too expensive. "The Community Choice Act is not a piece of legislation that I support," Sen. McCain told a Denver forum.

Bobby Coward says that's not good enough. He's a Persian Gulf war vet left a quadriplegic by a car accident. "If I don't get an attendant, I can't get out of the house, so I'm laying in bed."
He could check himself into a nursing home, and the government would pay for it. But he says that's the last thing he wants.

"Is it going to cost the government more to keep you in your own home?" I asked him. "No! No, matter of fact, it's cheaper.' A study this year from Prudential Financial says a home health aide in DC runs an average of $19 an hour. The cost of a private room in a nursing home: about $232 a day.

ADAPT Blogswarm, Day 2 -- Updates From the Action 2

2008-09-15T19:10:00.000-07:00

Sent to me via email from an ADAPTer:

At approximately 4:30 AM on Monday, September 15th, hundreds of disability rights activists from across the country took over the plaza in front of the US Department of Housing and Urban Development (HUD). The activists, from a grassroots organization called ADAPT, are targeting HUD with this 'tent city', http://www.duhcity.org , action because people with disabilities are in a housing crisis. There simply is not enough housing that is accessible, affordable, and integrated for people with disabilities.

ADAPT activists have taken this message to the Democrats and Republicans. Eleven ADAPTers were arrested Monday afternoon at the National campaign headquarters of Senator John McCain.

To support these activists and to make this action work, ADAPT needs your help! We need the candidates for President and those for Congress to here (sic) from YOU - the VOTERS of this NATION!

Use this LINK to send a letter to the Candidates for President and the Candidates for Congress in your district! Then send this action alert link to EVERYONE you know!

http://capwiz.com/rochestercdr/issues/alert/?alertid=11928371&type=ML&show_alert=1

ADAPT Blogswarm, Day 2 -- Updates From the Action

2008-09-15T13:17:00.000-07:00

Word keeps coming in on the ADAPTers' work so far. Groups have gone to the Democratic National Convention office and to Senator McCain's headquarters in Virginia. ADAPTers at the DNC were escorted by police officers, presented their case for the Community Choice Act, and invited staffers to DUH City. So far, eight people have been arrested at Senator McCain's office, and the group has not been granted an audience to present their case. The following call has gone out:

Please call the office listed below and tell McCain's staff to get ADAPT a meeting with John McCain!!
Disseminate!

Mid-Atlantic Regional Headquarters and Virginia State Office
1235 S. Clark Street, 1st Floor
Arlington, VA 22202
Office number is 703-297-8900
Office fax is 703-414-0051
Email Virginia staff at virginia@johnmccain.com

ADAPT Blogswarm, Day 2 -- Press Release and DUH City Times Issue 1

2008-09-15T11:33:00.000-07:00

Media Advisory:
Monday, September 15, 2008

For Information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org

ADAPT Fights Back re: Nation's Low Income People with Disabilities Left Behind in Election Year Agendas

Who: ADAPT Community (500 disability rights activists from all over the country.) ADAPT is the nation's largest cross-disability grassroots disability rights organization.

What: News conference to announce opening of DUH City.

When: 10 a.m. on Monday, September 15, 2008

Where: The plaza outside the U.S. Department of Housing and Urban Development, 451 7th Street S.W., Washington, DC 20410

Why: The 2008 election campaigns have included rhetoric about tax breaks for middle income families, and media coverage has included stories about families who have children with disabilities.

Left out of all the election rhetoric are the candidates' positions on and commitments to those babies with disabilities who grow into adults with disabilities who all-too-often survive on extremely low incomes (less than 30% of the median income). These extremely low incomes are often the fixed benefit amounts of SSI and Social Security.

In 2006, according to Priced Out in 2006, the federal SSI benefit was $603/month and the average cost nationally of renting a studio/efficiency apartment was $633/month.

There are not enough AFFORDABLE, ACCESSIBLE, INTEGRATED housing units to handle the current demand in communities across America. When the Community Choice Act (S 799, H.R. 1621) passes, and older and disabled people can choose to live in their own homes instead of being forced into nursing homes and other institutions, the need for affordable, accessible housing will increase. And as the baby-boomers continue to age, the demand will grow exponentially.

HUD, Congress and the Administration have broken promises, cut funding for housing stock and housing subsidies and enforcement of anti-discrimination housing laws, and simply ignored the nation's low-income people with disabilities altogether.

ADAPT has established "DUH City" (reverse of HUD) to bring attention to and document the struggle of low income people with disabilities. When the average rent for even an efficiency apartment is more than your monthly income……where do you wind up? All too often you're forced out on the street or into a nursing home or other institution. DUH!

ADAPT's tent city will be typical community complete with its own newspaper, TV coverage, and other services.

Duh City Times - First Edition - September 15, 2008

Announcing the founding of duh city By: Jerry Costley

Solidarity! The Oxford Dictionary defines this oft used term as " noun: Unity resulting from common interests, feelings, or sympathies."

How do we gain those feelings or sympathies for others? One way is to experience or participate in the privations or hardships experienced by others.

Solidarity in Unions is gained by joining the picket lines, some snow, wind, rain or blazing heat. Want solidarity with the starving millions of the world? Try skipping a few meals and donating the savings.

ADAPT (American Disabled for Attendant Programs Today) in solidarity with our brothers and sisters who are languishing in nursing homes and whom are in fact homeless have decided to likewise render ourselves homeless through the creation of DUH city—a homeless tent city. Established in the shadows of the Housing and Urban Development Offices and built on a foundation of HUDs broken promised (see the following articles), we expect that DUH city will highlight the plight of nursing home inmates—why we consider those in nursing-so-called homes homeless, what HUD has failed to do about this and what they can do about it.

Along with the founding of DUH city we are proud to announce the establishment of the DUH City times. Published daily throughout our protest we will provide background information on the incarceration of thousands of our brothers and sisters in nursing homes for the crime of having a disability. We will also provide updates on our daily protests. We hope this newspaper will go beyond enlightening and will serve as a call to action to Congress and all who care about individual freedom and dignity.

Define People in Nursing Homes as Homeless By: Darrell Price

We recognize that institutions such as nursing homes are not "homes" at all; no more than any non-disabled person would consider a homeless shelter or a hospital bed a home.

Just as homeless shelters and "double up" housing are not real housing options for people who do not have their own residence, nursing homes and institutions are not real housing options for people with disabilities. Just like people in shelters, people in nursing homes do not have control over their own lives. Staff in institutions dictate every aspect of the lives of people with disabilities who are trapped in institutions. They dictate when people wake up, when and what they eat, and where they must spend their time during the day. Like people in homeless shelters, people in institutions have little or no privacy. Just like people in shelters experience abuse and neglect, people with disabilities experience abuse and neglect by the same staff that is supposed to "care" for them. People who are homeless and people in nursing homes are kept in the same basic struggle because of all these conditions. Due to lack of support and control over their own lives, these situations continue to perpetuate social and economic injustice.

The basic solution for all these groups is similar; a permanent, affordable residence that is fully integrated into the community. The current service system must be reformed to provide people with disabilities affordable, accessible integrated housing with services that are controlled by the people who use them and follow them to the setting of their choice.

Defining people in institutions as homeless is a critical part in making this goal a reality on the local, state, and national level. It will help insure that government agencies and other service providers for people with disabilities meet their moral and legal obligation to provide community base housing and support services. For example since 1998, the U.S. Department of Housing and Urban Development (HUD) has issued regulations and guidance which states that "the housing needs of people with disabilities are not met by beds in nursing homes and other service center facilities, but this is not enforced. Contrary HUD regulations housing needs assessments often fail to include people in institutions, so this need is rarely planned for or met in most communities across the country.
By keeping us in nursing homes and other segregated institutions you are destroying the lives of thousands of people with disabilities for the financial benefit of a few.

Daniel's Story By: Mike McCracken

Daniel P considers himself a homeless man living in a nursing home. He shares the room with 3 other interchangeable men, interchangeable because occasionally one roommate will pass away. The emotional toll of having a roommate die makes developing deep friendships almost impossible.

Daniel is 54 years old, and has been in this facility for over 2 years. He came due to a bout of liver failure and has been kept there due to family pressure and a severe lack of affordable housing. His family fears he cannot take care of himself in the community, and housing—well he is on housing lists.

Whenever anyone asks him he tells them he feels imprisoned. The occasional trip to a store with his sister or an outing with other facility inhabitants only increases his desire to be back in the community. A shopping trip to Wal-Mart or a visit to a doctor is exciting. Everything is exciting when you are usually confined to a nursing home.

Like most, Daniel has made mistakes in his life, but not large ones. He has never hurt anyone and is among the first volunteer to help whenever asked. Certainly, he has never done anything worthy of an indeterminate nursing home incarceration. He has done everything his family and doctor has asked in order to get out. Grudgingly, with some advocacy from a local Nursing Home Transition coordinator, the family and doctor are willing to "let him" go back into the community.

But there is no available housing which is affordable and accessible. Daniel cannot climb more than a few stairs and has trouble with stamina. His only income is from SSDI and, although substantially more than SSI, it is still not enough to rent a reasonable apartment.

Daniel has applied at the local housing authority and several local Section 8 apartment complexes. He cannot apply for a Section 8 voucher as that list is closed right now and even if he could the waiting list is many years long.
Daniel watches TV waiting for that letter which will give him back his freedom. A simple letter saying he is being offered an apartment, a home- his home and his life. A letter that never comes.

ADAPTers Speak Out on Housing By: Amber Smock

Affordable, accessible, integrated housing is a critical concern to ADAPTers and all people with disabilities across the nation. Many of us have fought for basic access for decades, and we're still being hamstrung by the terrible lack of housing for our people.

Dale Reid, Denver ADAPTer and administrator for the Home Health Agency at the Atlantis Community, said that the lack of housing is basically keeping people jailed in nursing homes in Colorado. Dale said, "In Colorado, 3,800 people who live in nursing homes and institutions have testified that they want to get out. But at Atlantis, we are only able to free one or two people per month. We could be doing a lot more, but we can't because we don't have affordable, accessible, integrated housing."

Lack of housing for people with disabilities also prevents us from building real communities. Tamara Wulle of Salt Lake City ADAPT said, "I think accessible housing should be important to a lot of people. I want to be able to have my friends come visit me and my mother has a disability. It's important to be in an accessible home. also, most of my friends have babies and children so visitable and accessible housing helps everybody."

Folks with disabilities are also familiar with business owners who don't make their businesses accessible because they say, "We never have disabled people in here." Doris J. King of Salt Lake City ADAPT notes that affordable, accessible, integrated housing allows people with disabilities to get around, go into stores and spend money. She said, "If people were living in the community, they could get to stores and store owners would HAVE to make things accessible."

Doris also made a great point about community when she talked about access to her neighbors' homes. "I've lived in my house for seven years," she said. "I don't know my neighbors because they have one step up at the front and I can't get up to their door."

Toby Tyler of Wisconsin ADAPT pointed out that in our struggle for housing, there is a big problem with nursing home lobbyists giving big contributions to political campaigns. He said, "Politicians need to stop taking contributions from the nursing home lobbyists. Living in an apartment or house is 100% better than living in a nursing home, because nobody wants to live in a nursing home. These lobbyists don't care about people."

Toby also said that we need to see all politicians talking about disability rights issues in their campaigns across America.

The fight for affordable, accessible, integrated housing is everywhere, from small towns to the legislative offices of our nation's capital. It's not some problem "other people" have. It's a real problem that affects real people, like YOU.

Doing the Math…
Why We Need Affordable, Accessible, Integrated Housing
By Marsha Katz

There are more than 4 million adults with disabilities under age 65 who live below the poverty line. This represents over 28% of adults with disabilities under age 65.

The 2006 poverty rate for adults with disabilities is nearly three times greater than the poverty rate for adults without disabilities (25.3% vs. 9.2%).

In 2006, the $633 national average rent for studio/efficiency apartments was more than the entire $603 monthly SSI check received by low income persons with disabilities and intended to cover all their living expenses.
In 1998 SSI payments represented about 24.4% of the national median income. By 2006 the value of an SSI check dropped to only 18.2% of the national median income, and 25% below the federal poverty level.

Adults with disabilities comprise well over half of the people with low incomes (under 200% of the poverty level) who reported significant hardships (couldn't pay rent/mortgage, food insecurity and hunger, didn't get needed medical/dental care) in 1998.

The ADAPT Community By: Tim Wheat

ADAPT is a national grass-roots disability rights group.

We work for equality and positive change in policy and programs to include people with disabilities in American society.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Do you want to live in a nursing home?

Blog Swarm -- Keep/Set Our People Free!!!

2008-09-14T18:16:00.000-07:00

This week, I will be sharing with you press releases of ADAPT's current action in Washington DC to ensure PWDs and older people have the right and means to live independently rather than in a nursing home or hospital. There are a couple of pictures of today's organizational meeting over at Twitter. Check back every day to see how things are progressing, and if you are so inclined, please write or call your Congress-people to ask them to pass the Community Choice Act (S. 799, H.R. 1621).

ADAPT Promises Pre-Election Surprises in D.C. to Get Community Choice Act Passed

For information contact;
Randy Alexander (901) 359-4982
Chris Hilderbrant (585) 267-0343

Washington, D.C.---Over 500 ADAPT disability rights activists committed to getting the Community Choice Act passed during this Congress are coming to town September 13-18 to exert some pre-election pressure on policymakers. The Community Choice Act (S. 799, H.R. 1621) would allow people with disabilities and older Americans to choose to live in their own homes and communities instead of being forced into nursing homes and other institutions by the current institutional bias in the nation's Medicaid program.

"We are coming up on an election," said Chris Hilderbrant, ADAPT organizer from Rochester, New York, "and one of the two candidates for president, Sen. John McCain, has blatantly refused to endorse the Community Choice Act even though he says he supports community services. On the other hand, Sen. Obama and his running mate Sen. Biden have both signed on to this legislation. Maybe Sen. McCain needs some more convincing."

ADAPT will be in D.C. to confront a variety of policymakers and systems that continue to put up barriers to community living for disabled and older Americans. Home and community-based services, housing, transportation, hospital discharge planning, and managed care of long-term supports and services are all on ADAPT's list of possible targets.

ADAPT celebrated 25 years of activism in Washington, D.C. in April of this year, closing down both the Republican National Committee offices and Sen. McCain's office in the Russell Senate Building demanding that Sen. McCain, himself a person with a disability, sign on to the Community Choice Act.

"Not only does Sen. McCain have a disability himself, but he has an aging mother," said Randy Alexander, ADAPT organizer from Memphis, Tennessee. "You'd think he'd understand our issues, but maybe having all that money and all those homes puts him totally out of touch with the reality that older Americans and Americans with disabilities live everyday. Being able to live free in the community shouldn't only be available to the ultra-rich. Civil rights are not based on income!"

Since its inception in 1983, ADAPT has fought for the right of people with disabilities, old and young, to live in their own homes and communities. ADAPT efforts have resulted=2 0in a significant shift toward community of the Medicaid dollars formerly directed overwhelmingly to institutions. ADAPT has also been credited by former federal Medicaid officials with creation of the Money Follows the Person portion of the 2006 federal Deficit Reduction Act of 2005. ADAPT is the nation's largest cross-disability grassroots disability rights organization.

During the week of September 15, 2008, ADAPT will debut internet tools that will help the disability community across the country stay closely in touch with ADAPT action activities as they happen. ADAPT will widely publicize these tools as soon as they are available to the public.

I'm paying HOW MUCH for this?

2008-09-12T09:43:00.000-07:00

The last three days, I've had a care worker come to get me up who I have never had before through the agency I use while in Kansas (yes, I'm still here, hiding from huricanes). This woman used to work in a nursing home and for whatever reason decided she'd rather do home care instead.

Apparently, the reason was not to listen to the person she is helping and argue every little detail.

The first day was frustrating and took a while, but that's normal. Yesterday, after she left, I decided I didn't like her. Today, BEFORE she left I decided I REALLY didn't like her. It all boils down to two things: she doesn't listen to what I'm trying to tell her, and if she can't see it then it must not be true.

My big frustration yesterday involved positioning in my chair. I will be the first to admit that getting me in a position in my chair to where I can function normally (for me) is a royal pain in the ass. I told this lady this on the first day, but I also told her that with a bit of patience, it would happen. Silly me -- I forgot to mention listening to the person being positioned. Bad Dawn -- no cookie. When I asked her to move my left leg, I quite specifically said to please pull on my pants leg on the inside of my thigh. Instead, she first moved my foot (which did nothing for getting my hip comfortable), then she pushed on the outside of my knee joint. My left knee has next to no decent muscle or tendon holding the joint together, so it is very floppy. When you push on the outside part of the joint, my knee moves in but my hip and foot stay where they originally were, putting my knee at an angle it is not supposed to be in short of getting your butt kicked in a Vin Diesel movie. Needless to say, it hurts. That whole task ended with me calling to Mom (she of having JUST had a total knee replacement a mere three weeks ago) to have her get me comfortable.

Today's frustration involved underwear.

A) It is not comfortable to have the waistband of my undies sitting crossways on my anus in general (because they were pulled up on one hip but not yet the other), but it's freaking tear-worthy to have said waistband pulled forcibly across said anus because you're trying to "straighten" the waistband where it sits below the hip rather than pulling it up into proper hip position first. Loud, irritated voice winds up being heard because through the "straightening," I was trying to get her to pull the damned things up first. She kept saying to me, "I can see it's crooked. Just let me finish before I do what you're saying." My response was, "I can feel what this fiction is doing to my anus, so just pull up the underwear."

B) After peeing, when the left side of my underwear gets caught in the elastic band of my pants on the left side and thus come up crooked and giving me a wedgy, STOP FREAKING OBSESSING OVER THE FREAKING ROLLED RIGHT WAISTBAND AND STRAIGHTEN THE FREAKING UNDERWEAR, preferrably after the first time I tell you that's what's wrong.

And do you know she actually had the NERVE to ask me why I was so tense this morning!!!

"Because you won't listen to me!" I practically shouted at her. "I'm trying to make your task easier, but you just keep doing what you want to do."

"But I can see this roll here . . . ."

I surpressed the scream trying to boil out. "That is partly because my underwear is twisted to the left. If you could shift it to the right, it may help."

"I don't understand."

What is so hard about what I said to her, would anyone who's reading this PLEASE explain it to me?

At this point, Mom came in and got me positioned in my chair. Why am I paying $16.50 a hour to an agency when the person they send to help me can't understand "move my underwear to the right" and my recovering-from-surgery mother does the hard work???

Thank goodness my regular worker comes tomorrow.

Who's the idiot here?

2008-09-06T10:18:00.000-07:00

As seen via another blog, a story about a man cranked off about to whom his donated computer was given and the rebuilder's response to the jackass.