Sunday, December 19, 2010

Let Us Make Pillows. And Soap.

Random Winter Break-ness:

Today I did nothing but watch T.V. and sleep. Grey's Anatomy re-runs and National Graphic documentaries and blissful, long, naps with no "I haven't done my homework" guilt. That is, I slept until Mom called. Then I went shopping for pillow-making stuff. I got two different colors of material to start out with: a dark, vibrant fuchsia and a purple so true it makes my heart happy. Tomorrow, I try my first one. I think I'm going to stuff it with allspice and cinnamon and add a few drops of essence of lavender. If it works, I'll give a pillow each to Mom and Biz for Christmas. If it doesn't, I'll make them cookie-cutter soaps in pretty little baskets.

I also got a coat today. It's the first brand-new coat I've had in six years: deep, plum purple. I feel kind of bad for enjoying it so much, because it was a joint gift from two of my neighbors, one of whom I positively. cannot. stand. I know it and he knows it and I took the money anyway. Does that make me a selfish Christmas ogre? Does it matter at all that I really needed the coat?

Four of my grades came in. 3 A's and a B-plus. I'm still waiting on my Stats grade. If it's good enough, I'll actually make the Dean's List this semester! Do I dare hope? I've always wanted to make the Dean's List at least once. I wish Dr. Morgan would submit the damn grade already!

In other news, I really need to sort out my eating problem. I am overweight. It is unhealthy. I avoid mirrors and I hate having my picture taken and I get depressed every time I try on clothing. Thing is, I also get depressed if I am not constantly eating. It started out harmless enough: freedom eating. I left home, and suddenly there was no one to tell me how gross I was. There was no one to sing ditties about my fatness through the bathroom door as I dressed after my shower, no one to send me away from the table for holding my fork the wrong way. And so I ate. I ate rich, decadent things covered in sugar and icing. I moved to Evansville and ate the globe: Chinese, Indian, Thai, Italian, Greek. Food was a joy. And then I started antidepressants. Lexapro took ten pounds and ballooned it into a lot more than ten. It also made me drool and pretty much put me into a coma. I took so many others in between that I've forgotten their names, except for Zoloft and Remeron. They tried me on Wellbutrin, which supposedly makes people lose weight, but it didn't work. I crashed. Boom. Now I'm on Paxil. It works, but it's horrible for weight control. And it doesn't help that I can't quit eating. I actually get sad when I don't eat, when I don't have something edible in front of me. And I've realized that it's because when I don't eat, I think about my mother. I think about her a lot. In fact, the only time I don't think about her is when I'm stuffing my face. It's like a drug: it makes me feel better, and then when I come down off the eating high, all I can hear is her voice telling me how gross and fat I am, so I eat some more to shut her up. Sigh. All those years of therapy, and all I can do is identify *why* I'm screwed up. I'm a social work student, for pity's sake. I'm being trained to be a therapist, to help other people, and I can't pass a bag of chips without eating the whole damn thing. I know all the tips and tricks and all the right things to say, and I can't do them for myself. I am a social worker who needs a social worker to kick her ass into gear. Sigh.

(I think big women are beautiful. Unless they're me. This is why I've taken up crafting: pillows and soap and suchlike. If I keep my hands busy, maybe I won't eat so much.)

Tuesday I see the orthopedist about my hip. I fell on the 6th and tore my flexor doing a horrible version of the palsied splits that left me howling like a baby on the hallway floor and put me in the hospital for two nights during the last full week of school. When Mom and Dad were in Georgia and I couldn't remember anyone's cell numbers so one of my friends could come sit with me in the ER. It sucked bigtime. And it hurt like hell. It feels better now, though, at least most of the time, which is good: I have a bad knee on the left side. A bad hip on the right side might turn me into a cripple or something, and we wouldn't want that.

Tomorrow: the library. I'm going to get a stack of books up to my eyeballs and read them all in a month. Imagine it: books that I don't have to read! Non-textbook books! Crafts and books. Not food. Crafts and books.

I'm trying.

Sunday, December 5, 2010

December 5, 1984:

The details surrounding my birth are a mystery to me. I have a few tidbits here or there, but I've had to piece the bigger picture together myself: I was never really successful at getting anyone to tell me the story. I have the following things:

1. Methodist Evangelical Hospital in Louisville, KY, was (at least at the time) the nearest hospital with a Neonatal Intensive Care Unit. Thus it follows that I was born a bonafide Kentuckian, thereafter to be the brunt of many a blond /Kentucky-vs.-Indiana joke: "What did the blond Kentuckian shout across the river to the guy in Indiana?" -- and then there'd be a punchline along the lines of, "Big red truck! Duh!" and all the relatives who had been born safely across the line in Indiana would hee and haw and give my (at one time very, very blond) curls a tug.

2. I do believe my birth was preceded by a helicopter flight.

3. Something, somewhere, went very, very wrong. No one ever told me what actually happened, but apparently a decision was made to let me "take my time" arriving. Perhaps this was the wrong decision. I have chosen not to press the issue, because I do not want to know. Medical error or not, Cerebral Palsy cannot be undone. Knowledge of a mistake would only make me bitter.

4. My parents and grandparents used to tell me that I had been a "Smurf baby," which I took to mean that I was not breathing upon being delivered and had therefore (naturally) turned blue. I do not know how long it took the doctors to revive me. Too long, evidently.

5. I was early (By how much I am not certain) and small enough for my entire body to fit almost entirely along the length of one of my father's hands. I have a photograph of this. There were oxygen tubes in my nose; I was placed in an incubator for a period of time and was not sent home for a good while. At one point a television station in KY did a special on the NICU at Methodist, and I am told that the top of my head appeared on air, peeking out of a Christmas stocking. I wish I had a copy of this broadcast.

My family told me stories of my early life: how the temperature in the house had to be at a constant 70 degrees to ensure my maximum comfort; how I cried inconsolably at all hours of the day and night and could only be calmed by Teena, my once-favorite aunt (before she turned into a hellhound and decided to hate me), who would lie under an electric blanket with me on her stomach and rub my back and sing, "You Are My Sunshine," for hours; how I was so incredibly small that my grandmother used to buy Cabbage Patch dolls with clothes she liked just for the clothes, because they would fit me. I know that I was not officially diagnosed with CP until after I had turned two and still could not walk, at which point the doctors told my mother that I would never walk and that she should probably institutionalize me because I would likely be severely delayed in several critical areas of development. (i.e. retarded.) The doctors, however, did not know me: I talked a blue streak then just like I do now, and was reading at college level by the time I hit the fourth grade. I do in fact have a learning disability: my spatial reasoning is severely compromised, which explains why, at 26, I still have to add on my fingers. But I'm in college, and at the end of this semester I'll have a 3.5 overall GPA and almost a perfect 4-oh in my major, which just goes to show you how wrong people can be sometimes (!)

I had my first surgery when I was two, to correct my crossed eyes, then another at four to lengthen my heel cords so that I would not spend the rest of my life walking on tiptoe like I did back then. I still have some pretty wild scars from that one stretching up the backs of both my legs; sometimes when I'm walking my left foot kicks in too far and catches the back of my right ankle and the scar tissue burns enough to make my vocabulary very colorful for a few seconds. When I was seven, I had my abductors, adductors, and hamstrings done all at the same time and spent several months encased in plaster casts from hips to toes (this is called hell, for those of you not already familiar with the definition), and several more months in a rehabilitation hospital undergoing intensive physical therapy (which is horrifically painful and therefore synonymous with hell, especially when you're seven.)

I got my first pair of leg braces at age four. They started out knee-length, and by the time I turned 18 they had both been shortened to just a few inches over the height of a high-top sneaker. (But at 18 I stopped wearing them because there was no one to make me, and so if I got leg braces tomorrow they'd probably be back to my knees. Teenage rebellion sometimes leads to adult oh, shit moments, as I'm sure many of you have learned for yourselves.) When I was fifteen, my surgeon developed a vested interest in my hammertoe and started making noises about breaking my feet straight and setting them with rods. I threw a screamer. I was so vehemently against this idea (and I'm still against it; I have friends who've had it done and it is not worth the trade-off because the rods hurt more than the hammertoe does, so NO ONE IS TOUCHING MY FEET, DAMMIT) that the surgeon agreed to compromise. Thus came the pure, unadulterated evil of toe straps, an extra piece of Velcro with slight elastic give riveted to the foot of each of my braces that went between my big toe and the rest of my toes and then strapped under the brace, effectively pulling my feet straight and holding them that way. No pun intended, but this crippled me. It completely changed the way I had learned to walk -- I had learned to walk on curved feet, not straight feet; it was unnatural for me -- not to mention hurt like nothing else in the world: for months I hobbled around wincing in pain, feeling as though someone was constantly cracking both my feet with a hammer. I started undoing the straps when I got to school and folding them under the braces, which worked until the mean little squares of Velcro left at the edges rubbed blisters on my toes. Then I'd had enough: I took a huge gamble against punishment for defacing my medical equipment and cut the damn straps off with a paring knife. Unlike the thing with the leg braces, I have never regretted this. I'll keep my crooked feet, thank you. They suit me just fine. The surgeons can keep their metal rods and their evil little straps.

There were other things: a stint with a brace meant to keep me from hyper extending my knee (Which I do these days just to freak people out: "I can pop my kneecap out the back of my leg." "Cannot." "Can so. Wanna see?") and a period of a few years with this horrible foam block between my legs at night to keep the muscles from contracting. Years of physical therapy, which I will have to put up with in cycles till the day I die and which, these days, wears me out to such an extent that I have to wait till school is out to go, because 45 minutes of PT makes my entire body shake with exhaustion and leads to naps of at least two hours, 3 times per week. PT fogs my brain and makes me feel as though I've spent too much time in the sun.

Today, 26 years later, I no longer have the braces or the toe straps or the foam contraptions. I've traded them for crutches and a walker and a manual chair and a scooter, muscle relaxers and arthritis medications. Over the past few years I have had to learn a great deal of humility: as a kid I never said, help. I never really needed to. I fell and sprang back up; I jumped rope and played Tag and learned various gravity-defying in-cast acrobatic maneuvers. But the reality of adulthood with Cerebral Palsy is very different from the reality of a childhood with it. Technically speaking it is not progressive: I can't wake up tomorrow with more brain damage. But the side effects, all the things that essentially make CP what it is, do worsen over time. The older I get, the less I can do. I hurt more. I tire more easily. I have had to learn help and please: Can you help me up? Can you please reach that? Would you mind getting the door? Carrying my tray? Tying my shoe? I am a young mind trapped in a rapidly declining body. It scares me witless. Sometimes I need to be reminded that it's okay for me to only be twenty-six, because I feel so much older. Sometimes I need to be pulled out of my disability for a moment.

Last night, my Mama and Dad did that for me. I don't think they knew it; we were simply going to Olive Garden to celebrate my birthday, as has become our tradition. But lately my body had demanded so much of my attention that I have become afraid of being a burden, and I needed to be reminded that Tiffany is what they see; Tiffany is what they care about. Not the crutch or the walker or the scooter or the limits, but the woman behind them.

So they piled me in the car and off to the Olive Garden we went. Dad bought me a drink at the bar while we were waiting for a table, and Mom mysteriously vanished for a few minutes. (I was too busy with my citrus vodka and real slices of strawberry floating in the fancy glass to notice. Do you know how difficult it is to fish a slice of strawberry out of a tall glass of liquor with a straw? It requires great concentration.) Then they treated me to a feast: signature Olive Garden breadsticks, calamari with marinara sauce, chicken gnocchi, and steak-Gorgonzola alfredo. Just when I thought my eyes were going to pop out of my head from the force of all the food, our waitress showed up bearing a chocolate cake with a molten center and white-chocolate shavings on top. Ruined my diet for the next 10, 000 years. Ruined my diet exquisitely. We talked and ate, just the three of us catching up, and they asked the parent things: how's school? Do you need anything? Money? Groceries? We talked about what I wanted to do after graduation, who was going to take my senior pictures, all the good stuff. These two people who missed my entire childhood, who didn't ever get to rock me to sleep or watch me head off to my first day of school, who have, in the past five years, done their share of funding and hauling and loading up wheelchairs and crutches and considering my mobility issues during every family outing, who have listened to me worry and fret about tightening physical restrictions and who have comforted me when it has come down to tears, sat with me at the table and just talked. They talked to me, the person inside the body that has demanded so much of their time and attention -- time and attention they never had to give up in the first place, but that they have handed over because they love me. It reminded me that I am not my disability, that I am not 115 years old, that's it's okay to be twenty-six and cover my mouth and squeal when I get a certain pretty red digital camera I have been wanting presented to me over a slice of cake at the table, a gift I never saw coming because my Mom is a sneaky ninja and vodka-soaked strawberries in tall glasses are a puzzle.

Today, I am twenty-six years old. I'm sitting here on the couch with a pillow behind my back for extra support and a walker within arms' reach, and sometimes I get scared and cry, and that's okay. Because today I am twenty-six years old, and I am not a burden.

Happy Birthday to me.