Appreciative

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.

Music Monday

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

Sadness and Gladness

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.

Two faces of SMA

First, my sister Stacy. This is one of my favorite pictures of her, taken when she was about 20. She was 27 when she died.




This is a closeup of her headstone. Don't mind my mom's shadow there.




This shows the entire headstone mounting. The turtle statue is painted to appear like Poe (as in Edgar Allen, her favorite author), her pet at the time of her death. Her best friend's son inherited him.




My brother Paul. He took this picture of himself with his webcam a couple of years ago.




A closeup of his headstone. He was a computer geek and gamer, and he was an English lit major.




The full mounting. Since the concrete company had nothing resembling books (not even books as bookends), my parents opted for this Celtic cross as an homage to his interest in Medieval history and literature.

Health update and goals

Sorry it's taken so long, but there wasn't anything to report on the hemoglobin situation until this week. My GP simply did another blood test (Hb still low), told me to take double the Prevacid until I was checked for an ulcer, gave me hemocult cards to check my stools for blood (big negative there, thank your Higher power), and referred me to the surgeon. I saw the surgeon this week, and he was at first as confused as I was about why I was there. He called my GP so they could consult, and they came to the conclusion to check my esophagus, stomach, and upper duodenum (first part of the small intestine) for an ulcer using a scope and to see if my uterus is building up too much lining during my cycle using a sonogram. I do the sono on Tuesday and the scope on the 30th. The surgeon said if he had to go to Vegas and bet money at the Anemia Game, he'd put his money on my heavy periods combined with the coumadin I'm on for my November blood clot.

Interestingly, my friend Lance (who also has SMA and is a year older than me) emailed me a day or so later with another possibility that, though slimmer than the period/coumadin cause, is something I should still be aware of and get someone (whether my GP or my pulmonologist) to monitor -- hypercapnia, or high blood carbon dioxide. I don't think high CO2 will cause low Hb, but it can cause the symptoms of low oxygen in the tissues if its concentration is high enough that it occupies more Hb sites than does O2. He pointed out that while sleeping with O2 at night will increase my blood-ox levels, if I am shallow breathing while asleep (and I do to some degree), I may not be eliminating enough CO2 upon exhaling. His youngest sister (who also had SMA) did this, and she may have died because of it (if I read his email correctly -- please correct me if I'm wrong, Lance).

So, I'm practicing breathing more deeply, because I have stuff to do before I kick the bucket.

In other news, I'm suffering from strained muscles in a couple of toes on my right foot after they got caught in my jeans while dressing the other day and were hyperextended (well, for me). It's a darn good thing I don't walk, because those little piggies go "wah wah WAH" when they're bent backwards.

So, drastic change of topic -- seemingly, but hopefully my change of approach will become logical in a moment. We found out a few days ago that the monument company had "snuck out" (meaning, they didn't call my dad first as he had requested) and set my brother's headstone on July 3. My dad was a bit peeved because the main reason he wanted to be notified was so he could meet them at the cemetary and get them to lay the foundation for the stone longer than necessary and set the headstone to one side rather than centered. Fortunately, the setters had gotten the memo. We went out the day after learning the stone was set to mount a Celtic cross on the foundation next to the stone.

Going to my sister's and my brother's graves made me pretty morose for a while that evening. It's been seven and a half months since Paul's death, and I'm still dealing with anger and depression. Then a day or so later, my friend Edie emailed to ask if I'd ever seen pictures that were taken when my folks accepted P's posthumous master's degree. They also received my sister's bachelor's degree in the mail a few months after her death. This got me thinking about my current Ph.D. endeavors and stupid little health problems. I mean, they always start out stupid and little, right? I wondered if these health problems of the last two years after more than twenty years of nothing serious was just an accelerated opening act to my own dropped curtain.

But there's something here I'm really truly down in my soul starting to realize -- I want to be alive when I receive my Ph.D. I want to have to scrimp and save for the gown and hood so I can go across the graduation stage, flipping the bird to SMA. I want to do the General Exam and the dissertation defense, as scary as those are, and I want my parents there and at the graduation. I want to see my work published and referenced. I want to get a job and drive students nuts with the things I want them to learn. I want them to think I'm either extremely enthusiastic or just a bit bonkers as I extoll, "Mendel rocks!" I want more and more people to not think it's a big deal to have a teacher sitting crookedly in a power wheelchair who paces while she lectures.

So you see, I'm far from done yet. I have all those things to do, but not just for myself anymore. Now I'm doing it for my sister and my brother, too.

Oh, what a stressful, crazy, amazing, rewarding thing it will be!

Dreaming and Memorials

I had the strangest dream of buying jewelry this morning. I was looking at seahorse earrings carved entirely of amber and getting irritated that they were so expensive. There were some bronze ones that were cheaper, but I didn't want them because I knew they'd tangle in my hair. There were turtle/tortoise rings also made of bronze that I was considering. Late in the dream, I went to slip a silver band of leaves on my left ring finger, and I saw an elephant head carved from bone already there. The ends of its ears were broken off, and that made me sad.

I'm probably getting a stylized turtle tattoo this afternoon as a memorial for my sister. I found this one online and knew it was perfect:



On mine, the shell knot will be yellow while the leg bands, eyes, and tail will be orange -- Stacy's favorite colors. The toenails of each foot will be different colors (one color for each foot) -- red, yellow, black, and white -- for the Lakota medicine wheel. In the months before her death, Stacy was becoming more and more interested in our Scottish/Celtic and Lakota heritages, and turtle was her primary totem. I almost have this feeling my sister is trying to bind turtle to me.

I'm also going to get a line or two of one of Paul's poems for his memorial. I don't think I'll get it today, but definitely before I go back to NO. This is the poem I've chosen -- it's one I've carried with me for a long time:

Words Never Spoken

Love never sought can never be found,
Through the storm raging beyond and within.
Quiet yourself and wonder how
My words remain with you long after
The sound has fled away. When all is still
Except your thundering soul; Look beyond
The fears your mind contrives to send
Your heart to distract: Listen to my words
Never spoken, but silently heard to
Engage your heart in this glorious meaning
To this life, often meaningless.

Congratulations Lynlee, Naomi, and Pauley

I watched two WSU graduations today via webcast. At 1530 was the Fairmount College of Liberal Arts and Sciences ceremony which I watched for two reasons -- Paul was posthumously being awarded his master of arts in English literature, and Lynlee was being awarded her bachelor of arts in _____ (please fill in the blank, L). Women's studies? Then at 1900, Naomi received her MA in communication sciences and disorders from the College of Health Professions.

Lynlee -- You are one of the most amazing women I know. You put yourself through school while raising your incredible child on your own AND birthing four beautiful babies to start three families. And you still got your BA in five years. Superwoman? I think so. Love you, and thanks for "whooping."

Nay -- You are another one of the most amazing women I know. Remember those days when you used to say you were scared of going to college, mainly because of algebra? Remember how you used to say the honor cords were for "brainiacs" like me, that you'd never graduate with one? Then two years ago, not only did you graduate with your BA, you did it with that gold cord around your neck. Remember also how you used to say you'd NEVER get a masters? Now look at you -- graduated and hooded and ready to be a "for real" speech pathologist. I'm beyond proud of you. I love you.

Pauley -- I know I don't need to say that I would've preferred to have seen you go across that stage rather than Mom and Dad. Mere words can't convey the joy and pain I felt watching them go up to accept your diploma, but I don't need words since now you can read my heart as easily as you used to read Shakespeare, Chaucer, and Donne. I love you.

Happy birthday, Paul

Today is my little brother's birthday.

He would have been 31.

He died last November at 30 of respiratory problems due to spinal muscular atrophy.

Our sister (between us) died seven years ago January at 27 for the same reason.

She would have been 35 this coming August.

I'm an only child now, and holidays and birthdays mock me, laughingly remind me that my two strongest allies in fighting this disease are gone.

I've cried four times today. Cried four times for my little brother who lived with nerve pain for years, who took asthma medications and breathing treatments every day, who loved to read Philip K. Dyck and Shakepeare and had a paper of the history of Narnia published in his professor's book (how bittersweet it will be to watch the new film this Summer) and had two poems published, who gave you a nickname to prove he liked you, who could do a perfect imitation of Timmy from South Park (I'm sure he was actually the model for him), who loved to feed Cheezits to my dog.

I miss him so much I think my heart will just shrivel up.