Sunday, December 11, 2011

Words to the wise

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*

Tuesday, December 6, 2011

A peek from under the pile

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.

Saturday, December 3, 2011

We're in the money

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.

Wednesday, November 9, 2011

And the winner is . . .

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.

Monday, October 31, 2011

A Day of Remembrance

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.


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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.


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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.


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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."


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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.

Tuesday, August 9, 2011

Gimps unite!

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*


Thursday, August 4, 2011

*trumpets sound*


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

Thursday, July 21, 2011

Meh

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.

Tuesday, July 12, 2011

Ow! Ow! Oh crap that hurts!


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.


Sunday, June 26, 2011

A mark of the despised barbarian

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".

Tuesday, June 7, 2011

This June 7 is much better than the last one

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!

Saturday, May 21, 2011

AAARRRGGG!!!

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?


Saturday, March 19, 2011

Day of awesome

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

Saturday, March 5, 2011

Happy anniversary, Mom and Dad!

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


Mom and Dad

Tuesday, March 1, 2011

Sleep is elusive

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.

Saturday, February 19, 2011

Ouch!

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.

Tuesday, February 8, 2011

English editor is also in my repertoire

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*

Saturday, February 5, 2011

Gone! Gone! Smeagol is FREEEEEEE!

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

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

Sunday, January 30, 2011

Pooped

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.

Tuesday, January 25, 2011

Big News!

I'm going home Feb. 2nd.

*happy dance*

Thursday, January 20, 2011

Roger Ebert Returns

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.

Friday, January 7, 2011

The young disabled in nursing homes

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."

Saturday, January 1, 2011

2010 in Review

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.


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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.


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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.


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


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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.


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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.