Good job, Lenka - full story for all

[Guest guest]

Lenka,

Here's the full story and URL for people who want to go to the

newspaper. Good job! ~ Gretchen

http://www.theunion.com/article/20060324/TODAYSFEATURE/103240125

My 'quiet monsters'

Life with Charcot Marie Tooth disease

By Lenka Vodicka

March 24, 2006

I know quiet monsters. I meet them in small white-light rooms with

faded forest prints beside posters of spinal columns. I am introduced

with remarkable calm. The names could almost be called pretty:

Scoliosis, Arthritis, Charcot Marie Tooth.

The doctors walk away and I am left holding the hands of these quiet

monsters. I will know them. I will become their world. As they become

mine.

I was born into their embrace. I walked late, had high insteps, grew

up under a cloud of constant weakness and clumsy falls. I marveled at

the simple ease of others pulling ahead on trails.

Why didn't my feet land where my eyes told them? I walked on my toes,

couldn't walk on my heels, and avoided active sports.

When I was 12, a routine school screening for scoliosis, or curvature

in the spine, alerted my parents that I should be checked. The doctor

held my feet, my Barbie-doll feet with high arches, and he shrugged.

The X-rays showed a snaking curve in my spine.

He sent me to specialists at UC . They took one look at my feet

and called in more specialists for more opinions.

The doctors told my parents that I had nerve disorder called Charcot

Marie Tooth Disease. In 1984, Charcot Marie Tooth was rare.

Specialists wanted to involve me in studies, take nerve biopsies, and

chart my symptoms. Charcot Marie Tooth was incurable. And

degenerative.

An entire new world opened before me, with choppy gray waters and

cold abysmal depths. I knew only one thing. Here be monsters.

Symptoms vary intensely among individuals. Thus, it is impossible to

predict the progression of the disease. Some people live their entire

lives without ever suspecting anything beyond clumsiness. Some people

live normal lives, than develop symptoms in adulthood. Some people

have multiple surgeries on their hands and feet before they are 15.

I considered my symptoms mild.

For the next 17 years, I looked the other way. I earned a teaching

credential and taught second grade. I figured I would write in the

downtime, though my unending exhaustion meant few stories were

completed. I married. I visited neurologists about every five years

to hear again that I had decreased sensation in my legs, weak

muscles, etc.

My children would have a 50 percent chance of inheriting the

disorder. Was that a reasonable risk? After all, would I want to have

never been born? Everyone has challenges of one kind or another. We

imagined life with a child who may not be able to participate in

physical activities.

Perfection is an ideal. We could offer unconditional love, safety,

and support. The doctors saw no reason why I should not have children.

When I was 30 years old, I held my baby daughter Anika. Her bright

eyes and clenched fists reached right into my deepest chasms. From

the very beginning, she was strong. She sat up, crawled, and walked

right along with her friends.

I felt firm earth underfoot again. The path wound before me, with

thorns and sunshine, but still a predictable, understood journey. I

had everything under control.

I dreamed that if I didn't believe in the monsters, they wouldn't

believe in me. They would walk up to me, look in my eyes, and if I

looked back unseeing, if I refused to call them real, they could not

touch me. They were nothing more than ghosts in the mists. I could

see right through them.

I was wrong.

I don't remember the first day of pain. The pain gathered as a wave

offshore, moving from occasional annoyance towards a constant

undercurrent. By May of 2005, I grimaced every day as I put my feet

up at lunchtime. Friends insisted that I go to a doctor.

My feet felt as though I had dropped dictionaries on them 10 minutes

before. One morning, I woke up with sore feet. I waited for the

doctor's appointment.

Meanwhile, I created treasures. I knitted baby blankets in maroon and

indigo yarns soft as dandelion fluff. I painted delicate faces on

beads for fairy-dolls, crocheting wild hair with aqua eyelash yarn. I

gave them away, almost all of them, the blankets, fairies, dolls,

inspirations. They seemed endless, a stream of continuing projects

that led one into the other over and over again. I had no idea what

treasures they truly were - my creative evenings.

Also in May, 2005, my left pinky finger went numb. At first it

annoyed me. I waited for a day or two without change. The sense of

fingers being asleep settled in for a long stay. I made appointments.

The neurologist leafed through old files. " So, Charcot Marie Tooth, "

he said. " I don't see that very often. "

Soon after, I picked up paperwork qualifying me for a lifetime

disabled parking permit due to " foot deformities caused by Charcot

Marie Tooth. "

Was that the official moment, then? Was I disabled? Was I " rising

above my circumstances " or " overcoming daily obstacles " or the

hundreds of other catch phrases that attached to the disabled

experience?

In late July, I walked into a certified hand therapist's office. My

finger had remained persistently numb for the past two months. She

held my hand between her own, had me close my eyes while she poked my

skin with what looked like stiff fishing wire.

" Tell me when you feel something. "

I knew she must be touching me. I felt nothing.

She tested my grip strength. My left and right hand could squeeze 34

and 36 pounds. " The chart ends at 38 pounds for someone your age, "

she said.

" So that's good, " I said. " I'm close. "

" No, you don't understand. The bottom of the chart is 38 pounds.

You're off the chart. That's not good. "

" Well, " she said, " You have a compressed ulner nerve. You must rest

your hands. Limit activity to 30 minutes a day. That's everything.

Knitting, sewing, anything needing a grip. "

The liberation no longer sounded appealing. I sat on the couch in my

imposed rest and struggled against the sense of panicked doom rising

up out of the stillness. I had known, in high school, how one day I

may need a wheelchair, how I could have physical limitations. But I

never thought about that in real terms. I knew my feet were troubled,

but I trusted my hands. The therapist showed how muscles were

atrophying around my thumb. My joints could all hyperextend, meaning

that what I thought was flexibility was actually weakness, where

muscles did not have the rigidity necessary to protect the ligaments

and nerves. I had to pay attention.

By early August, I knew a small peace. I finished the last of my

physical therapy appointments for my feet. I walked around the county

fair all day without trouble. I had feeling in my fingers again. I

joined a health club so I could swim regularly. Renewed optimism

replaced the dread.

Then school started.

Within two days, the pain returned. The numbness flared up. After

working to get the class ready, I collapsed into underwater naps,

feeling like a stone falling into deep water, rising up disoriented,

unsure of the day of the week.

In mid-October, I visited my hand therapist for the last of the

insurance-approved visits. She noticed my improved sensation. " You

need to think long and hard about your future, " she said. " You need

to stop focusing on surviving day to day. Instead, make a list of

what you would like to do in 10 years. Do you want to ride bikes with

your daughter? Because you need to make careful choices. Your energy

is valuable. Most people with your challenges last about 10 years

with active jobs like yours. How long have you been teaching? "

" Nine years. "

I knew I could no longer teach school at that point.

Part of me would like to be the Hollywood hero conquering all

obstacles through indomitable will and absolute spirit, who inspires

others by demonstrating that being held back doesn't mean being held

down, showing that sheer force of will can overwhelm all worldly

setbacks. Part of me would like to push to those heights, talk about

the 'gifts' of my challenges.

But a greater part of me listens. Wants to honors the differences

that set me apart. Wants to hold the changes sacred, wants to slip

into the gentle space with these quiet monsters and leave worldly

expectations behind. Part of me sees society as flawed, pushing me

into an able/disabled choice that does nothing to accommodate the

path set before me.

As I sit here with the monsters settled into my skin, I think perhaps

they are not monsters at all. Perhaps it is in forcing them to

conform to a narrow world, a world of fast-paced, self-sacrificing,

money-driven success. I now question everything; take nothing for

granted. I research the intricacies of disability benefits.

Perhaps the challenge is not in forcing the monsters to adapt to the

outside world, but in helping the outside world understand the

monsters. Perhaps the demands to make them conform to my expectations

are misguided. Instead of struggling to stay away from the gray

oceans labeled Here Be Monsters, I could swim right into the depths.

Perhaps I should ask what they want. Perhaps I should listen. Dance

with them instead of suffocating them. Perhaps then they will not be

monsters. They will simply be a part of the whole of who I am.

Update: March, 2006: Disability application is in the works. I am

waiting for approval which can take up to six months. The financial

implications of not working no longer matter against my health. I

rely more and more on medication to get through the day. Insurance

will not approve one anti-fatigue medication that costs 100s of

dollars a month, yet helps immensely.

We are not moving from Nevada County. I am unable to work full time

anywhere, anymore.

Genetic testing came back with proof of Charcot Marie Tooth type 1A.

I have a duplication of the PMP 22 protein gene, meaning two genes

where one belongs. I actually have an extra helping of genetic

material.

What is Charcot Marie Tooth?

Charcot Marie Tooth was first identified by three physicians in 1886:

Charcot, Pierre Marie, and Henry Tooth.

CMT is one of over 40 diseases helped by the Muscular Dystrophy

Association. CMT is not like the other diseases, though. CMT affects

the nerves rather than the muscles directly.

Nerves use myelin to speed communication. With CMT, myelin breaks

down, causing nerves to lose conductivity, eventually dying. The

muscles depending on those nerves, in turn, atrophy. Tendons shrink,

causing hammer toes, high arches, and curled fingers.

The degeneration focuses in the hands and feet. Generally, life

expectancy is not affected. CMT is the most commonly inherited

neurological disorder.

In the United States, CMT affects one in every 2,500 people.