An Anniversary of Sorts...
Cyd Shelby, 1/16/04
This is going to seem like a ramble. In many ways it is. I'm feeling somewhat introspective today.
Ten years ago today was the day before the diagnosis that upturned my life.
Ten years ago today was the day I went from being a very healthy 20 year old shoveling snow off the driveway to having my hands go numb, my entire left side refused to function properly, my balance was thrown... Today was the day my mother called my doctor, because I couldn't even get out of bed. My neck hurt so badly I couldn't sit up without rolling over first. I couldn't feel anything from the elbows to my fingertips. I couldn't breathe properly, it was like someone put a box around my lungs.
I'd been shoveling my driveway for three weeks straight. Seventeen snowstorms came barreling up the east coast, and my parents have a driveway the length of two football fields. I was home from school, and they had to work, so I had the dubious pleasure of being the one who got to hack through four inches of block ice on the driveway to make sure they could get home at night.
When my hands started going numb, I just figured I was overworking myself. After all, I was chopping ice. Naturally my hands were getting numb.
It was today, when the neck felt like it exploded and the entire left side went wonky that it was like everything turned upsidown. My hands felt like blocks of ice.
I cried because I couldn't put on my bra.
They couldn't even get me out of the house to see my primary care physician, because the cars couldn't get up the driveway. My PCP gave me a referral without even seeing me, he was that concerned about the sudden onset of symptoms. He immediately referred me to a neurologist, who agreed to try and see me that afternoon.
They couldn't get me out of the house. I couldn't walk straight, and they couldn't get the cars up the driveway to pick me up. My parents spent all day long trying to carve out the driveway so I wouldn't be put in jeopardy just trying to get out of the house. They almost called an ambulance to get me, but the neurologist said that while I might feel uncomfortable with the symptoms, it was better to make sure I didn't hurt myself on the way out of the house, and the ambulance wouldn't make it up the driveway any easier (he was right).
By the next morning, they'd managed to carve the driveway out and get a car back up to the top to get me. Daddy almost tried to carry me down the stairs, but I was being stubborn.
My mother drove me to the neuro's office. He went through a litany of physical tests, strength, walking gait, pinpricks... And then had his receptionist call the local MRI place and tell them to make an emergency appointment for that afternoon. She told him they said they didn't have anything open. He actually got on the phone with the MRI place and said "What part of EMERGENCY did you not understand???"
They managed to slot me in that afternoon. Immediately.
What should have taken only two hours took six. My left arm had started to spasm a bit, and they couldn't get it to hold still. You need to hold still for an MRI, movement throws the whole thing off. The guy was honestly apologetic with the last time they had to put me back in, because he TRIED to see if they could just use the one where my arm twitched. He could see the lesion in my neck, but couldn't definitively pinpoint the edges, so he had to do it again.
The neuro told me to come to the emergency room at the hospital when we were done, since he was on rounds there that night.
On the way to the ER, we stopped by Roy Rogers for dinner. I hadn't eaten most of the day.
Three times, I smacked myself in the face with a piece of hot chicken because my arm spasmed. My mother couldn't understand why I was starting to cry. She couldn't see what was wrong.
She went to drop me off at the ER so she could go get a parking spot. Handed me my birch beer and my MRI films in the envelope, and told me that I needed to take them to the check-in area. I started crying again, because I knew I couldn't hold them. She insisted, telling me I'd be fine, there was nothing wrong.
As I got up to the nurse's station, first I dropped the envelope with the films, and then when I bent down to pick them up, my arm spasmed again, and I dropped my birch beer directly on the envelope. I covered the films envelope and myself in sticky birch beer.
And yet my mother still couldn't understand it when I started to cry.
"There's nothing wrong. You have no reason to cry."
Thanks, mom. Really. Please, trade bodies with me for just a few minutes, and tell me how you feel.
The doctor called us into one of the rooms on the side, and he was really confused... He could understand the spot on the films that he saw at the base of my neck, but he also saw an aging spot in my visual cortex.
"Would that correspond to a large grey circle I had on my vision about three months ago during midterms? I went to an opthomologist, and he told me it was floaters. I didn't belive him, but it went away inside of a week, so I didn't follow up. And back when I was fourteen, there was a day when it was like someone dropped a sheet of gauze over my eyes, but it only lasted a day. Could that be it?"
Bingo. MS.
They admitted me to the hospital that night.
For some strange reason, the diagnosis was almost comforting. At least I KNEW what it was.
IV Solumedrol 4 times a day. PT when they could fit it in, which wasn't often, unfortunately.
The day I was admitted, I was standing next to the edge of the bed when the doctor called my name from outside the door. I almost fell on the floor. I was told to NOT get out of the bed from then on.
The next day, I went to the bathroom without asking for help. And my left leg collapsed out from under me and I fell bottom-first into the metal garbage can and thwapped my head on the wall.
The back of my left thigh still shows the mark where I fell into the can.
When you go into a hospital, leave your dignity at the door. From then on, a nurse had to escort me when I used the restroom, and I wasn't allowed to get out of bed without a walker. *&@()*$&#@ nurse didn't even warn me when she'd yank the covers off so she could look at the bruise that was left by the garbage can. And she would tug the walker two inches further than I was comfortable putting it, because she was in a hurry. I did my best to show her just how much I was going to cooperate if she kept pulling that garbage, and would place the walker right back where she yanked it from.
I couldn't really sleep. IV Solumedrol will do that to you. I maybe got three hours of sleep a day. And few visits from friends and family because of the stupid snowstorms. My violin teacher (Miss NJ 1981) came to visit at one point. I told her I'd be back up on that pageant stage eventually. Some thought it was denial. Maybe it was.
The Neuro made me laugh when he started juggling tangellos in my hospital room. :)
The spinal tap was surprisingly painless. I swear I'd recommend that man if I ever knew anyone who had to get a tap. No after-headache either, but someone told me not to sit up and to drink a mounain dew to restore the electrolytes and prevent the feeling of "decaffinated headache".
A week and a half after getting into the hospital (and after watching "Free Willy" and "The Cutting Edge" more times than I care to count on hospital TV), my insurance finally agreed to let me go to a Kessler Institute for Rehabilitational Therapy as an inpatient. It was only a mile down the road from my parents house, but my parents and the doctor both railroaded the insurance company into letting me stay, because trying to get me in and out of the house with all those stairs was going to be damn near impossible. Especially with the extra 40 lbs that the Solumedrol put on me.
They literally strapped me into a wheelchair and bundled me up so I couldn't move, and put me into an ambulance to take me to the rehab hospital.
I was the only person there under the age of 40. Everyone else in the hospital was there for a stroke or a hip replacement.
They had to put little nubs on the wheelchair rims so I could push the chair on my own. I still had very little feeling in my hands (although it was getting better).
Adam the nurse taught me how to pop a wheelie. ;)
For the next week and a half it was 8 hours of therapy a day. Physical therapy, occupational therapy, walking classes, recreational therapy. *whew*
Two days into being there, I figured out that while my feet couldn't support me standing, they COULD at least work for propelling me throughout the facility. I took the leg rests off the wheelchair and was cruising down the halls fast enough that the nurses were dodging. *grin* They started nicknaming me "speedy". :) My feet were moving amile a minute, and could definitely get me places faster than my hands trying to push the chair.
By the end of the week, I could go ten feet with a cane. But only during walking class, they didn't want me to hurt myself otherwise.
By the end of the second week of inpatient therapy, they sent me home, to do outpatient therapy. I could make it around the house enough that they felt confident I wouldn't wind up hurting myself.
Was still using a walker for another six weeks after that. Had to skip out on a semester of school.
Amazing how people at the DMV still won't give you a seat when it's obvious you really can't stand very well. Courtesy is a lost art. I was turning 21, and needed to get my new license.
It's been ten years since all of that happened.
A lot has changed.
Within a few months of that, I was walking normally again, and even rollerbladed in the MS walk for the first time that year, in Liberty State Park. With my dad being very nervous the whole time. *chuckle*
I went on Avonex.
Two years later, I got back up on that stage. I was doing pageants again. Never won more than local awards, but I proved to myself I could get back up and do it.
I started playing soccer again.
If I overdo it, I can feel exactly what my body is trying to tell me now. I don't need my hands to go numb after three weeks straight of shoveling ice to know what the warning signs are now. I've learned when it's time for me to pull back out of life for a while, rest up, and then come back again.
I now play fiddle at renaissance festivals. With that same left hand that was practically useless ten years ago.
I threw myself back into doing things with an intensity that stunned the hell out of both my parents and my first neuro. He had thought I'd never walk again.
Nowadays, most of what's wrong is invisible. The fatigue. The concentration. It becomes like ADD but ten times worse when I'm really bad. I feel L'hermitte's sign (an electronic *zing* that shoots from your neck down your hands and legs) if I overdo myself. If I let myself get too tired my eyes start giving me issues again, and I'll start losing my balance. I will periodically pull myself back out of the world because I realize that the only way to stay "normal" is to pull back and do nothing for a while...
And I realize that I'm one of the lucky ones. Between the miracles of modern medicine (Betaseron was just coming out on the lottery system when I was diagnosed), learning to read the signs, and just plain old stupid luck, I got lucky.
I'm still walking. Yeah, every once in a while I need to look back and remind myself exactly why I'm so goddamned lucky. Because despite the effort of will, I could have remained in that state that I was in when I was first taken to the hospital.
It's not the effort of will that's done it. That's only a minor part of it. The vast majority of the reason why I'm still in good shape is just plain old stupid luck of the draw and the miracles of modern science.
I know a lot of people who don't know any better will say "well she can get better, why can't some of the other people who have it? She can still play soccer and her hands are fine enough to play fiddle now and she still walks a mile and a half a day, so what's wrong with the rest of them?" I HATE it when they say that.
I didn't get better. I got lucky.
I honestly can't say that a damn thing that I've done has actually contributed to me doing a whole hell of a lot better now than I was ten years ago. When my brain starts fogging out and I get really tired, I start to realize just how much I've lost that just isn't noticed by anyone but me. But it's like every time I start to get worse, there's something in my system that almost defiantly screams at the problem, the more it hurts, the more I work at it, because I have to prove it wrong.
Someday, I'll be wrong, and I know it. For now, the attitude seems to get me through. Call it denial if you like. I know the problems are there. Somewhere. Right now, I can work through them. The day will inevitably come when I can't, when the bounceback goes from recurring remitting to secondary progressive, when my system no longer recovers the same way that it has, when my defiance towards my condition will no longer assist me to bounce back from it all, because the body ceases to pay attention.
But not today.
Today, it's been ten years.
And I'm still kicking.
Do you hear that, MS? DO YOU HEAR THAT, YOU GODDAMN BASTARD? You keep trying to rob me of part of my life, and right now, I'm winning! You keep trying to take me away piece by piece, but I WILL NOT GO SOFTLY INTO THAT GOOD NIGHT!!!
Where's the shovel? They're talking about snow this weekend. And I'm not letting the snow stop me. It may slow me down, but it ain't stopping me.
Pass the peanuts.
First Diagnosis
by Cyd
Never will I feel this way again.
What once was whole,
Now sundered and undone.
My life again, reborn, yet at an end.
With birth comes pain,
And with the pain comes longing for a past,
A time gone by, to never come again.
Reborn once more
to a world I never made.
To have my life back,
With old sorrow, old pain,
Or to be reborn,
New sorrows, new pain,
New struggles to outweigh the past,
New attitudes to consider.
Did part of me die?
Or was it just replaced?
Is life over?
Or has it just begun?
Is it a new me?
Or just an old one in a new form?
Someone help me to understand
For a part of me is gone
Replaced forever by a shadow
With a new part emerging
When life seems at an end.
Who do I like more?
The old me or the new?
The new is stronger,
More direct, more penetrating
More sincere, more in depth
The old more sensitive,
More understanding, more naieve
More the dreamer, more nostalgic.
It only takes a little time
To discover who is new
And who was there all along.
Though life is at and end now,
And life is just beginning,
Maybe some things were meant to die,
And some are better off dead,
And some should just let go.
I am young, yet experienced,
Aged, yet naieve,
And though my life is over now
A new world's just begun
And with every end, there is a new beginning...
As I said, feeling a little introspective today.
This year, I'll be walking again as part of Team Wench, in the MS Walk in Annapolis, MD. If you would like to support me in my cause, please click here!
Thank you for supporting us in the fight against MS!
