Disability? What Disability?

[Guest guest]

Disability? What Disability?

Overcoming the Reality, Stigma and Pain

http://www.chabad.org/theJewishWoman/article.htm/aid/569414/jewish/Di

sability-What-Disability.html

By Jerry Farris

Someone once said: " Really lucky people do not necessarily have the

best of everything; they are the ones who make the most of whatever

life throws at them. " In my case, it's more like, disabled people do

not necessarily have the best in life; they simply take what life

has thrown at them and make the most of it.

I can't speak for everyone who has a disability, for we are all

different as we are diverse. My disability may not be as severe or

disabling as someone else's, but it has had a profound impact on my

life and career.

I suddenly found myself on the floor in incredibly unbearable pain.

I have a rare neuromuscular disease that is not supposed to be

sudden in its appearance, nor disabling or hereditary. Mine, it

turned out, was all three and then some! Chronic Inflammatory

Demyleanating Polyneuropathy or CIDP, is generally one of those

slightly aggravating diseases that doesn't stop you in your tracks,

and you go about your life like other " normal " people with

occasional muscle discomfort and perhaps balance problems at times.

Not so with me (who likes to be like everyone else, anyway?)!

I awoke one morning at 5 o'clock to go to my nursing job. When I

tried to stand up to go shower, I suddenly found myself on the floor

in incredibly unbearable pain – all over! I somehow managed to drag

myself into the bathroom and pulled myself up.

I tried to yell and wake my daughter who was sleeping upstairs, but

found even my voice was barely audible. So I banged on the pipes and

radiator until she came downstairs.

So began my battle with what was initially a " fever of unknown

etiology with partial paralysis. " Years in and out of hospitals with

muscle spasms, muscle pain, grossly abnormal (yet otherwise

unexplainable) muscle tests followed. Still, nobody had an answer as

to what was wrong.

After the initial three-month stay in the hospital and

rehabilitation, I went home in a wheelchair. I was told I would

never walk again; but I decided I would, and painfully worked to

that end. After another few months I was on a cane and returned to

work as a nursing supervisor.

But as fate would have it, I could not continue in the nursing

career I had worked at for nearly 30 years. I developed diabetes and

severe foot-drop and was told I had become a liability; I was forced

to retire. The muscle pain and partial paralysis of my lower limbs

increased and I was once again in a wheelchair. Upset with my lot, I

became active in volunteering at the Veterans Administration Out-

Patient Clinic in my town, and worked in the Physical Therapy

Department for six years. I didn't do much, just made appointments

and became good friends with the therapist there. She and I began a

therapy program to try and improve my balance and strengthen my leg

muscles.

Finally, in 1999, I came out of the wheelchair and walked with arm

crutches. I still used the chair or a scooter for long distances,

but around the house and for short jaunts, the crutches became my

support. I even took a trip to Israel – the fulfillment of a

lifelong dream!

But I digress. I really missed nursing and working at the VA was

nice, but not really fulfilling. So I was talking with a friend one

day who thought I had a great sense of humor. She introduced me to a

friend of hers who publishes a magazine just for the disabled

community. After talking a few times, we decided I would try writing

a humor column about living with a disability. So " On These Wheels "

was born. The first column was written in 1998, and today I

submitted my last column (the magazine has been sold).

I began to realize that here really is healing in humorWriting about

my experiences as a disabled person gave me the ability to laugh at

myself, and help others to laugh also. That sense of humor made it

easier when people would stare at me when I fell. I would simply

look up and say something like, " Hi! Did you know there's a crack in

this sidewalk – and I just found it?!! " Laughing when you have

fallen and truly " can't get up " is never easy, but it keeps you from

getting depressed about your situation.

Once I began to do that, I began to realize that there really is

healing in humor. Readers began to call the office and say they were

laughing at things that they never before thought as funny, and

doctors' offices and one medical school would call asking for copies

to give their patients and students. For the first time in years, I

felt like I had found a new lease on life.

Of course, there was the normal day-to-day living to contend with,

and I have lived alone since my divorce in 1979; and I didn't want a

live-in helper either. That meant learning initially how to do

things while in a wheelchair in a non-wheelchair apartment –

t'wasn't easy!!!

My children say the word " stubborn " doesn't even begin to define my

determination. I wouldn't let anyone help me do anything for a long

while. If I couldn't do it, it didn't get done. Finally, my friend,

the therapist, convinced me to let her come to my house and see what

I needed help with. Together we either found aides to make things

easier (like knives with fat handles or a board to help me slide

from the wheelchair onto the bed). Then we worked on things like

making a bed or running the vacuum. I believe re-learning to do what

I had been doing for years was the hardest thing of all.

I became determined to get better. Once on the crutches, I still

exercised my leg muscles to get stronger. Finally, after a couple of

years, I was able to walk around the house by holding onto furniture

or walls and counters. I got brave at times and would walk a couple

of steps without holding onto anything. Sometimes I made it,

sometimes I would fall or nearly fall. But I kept " practicing " ;

after all, babies don't walk without falling the first few times

either!

I still had spasms in my legs and after a few years, my arm muscles

and even chest and back muscles at times, would spasm. It seemed the

disease was getting worse.

It was one of the rarest forms of that diseaseI was sent to a

neurologist who specialized in rare neuromuscular diseases. After an

EMG (muscle test) and muscle biopsies and other tests, it was

determined I had the CIDP, and after taking a detailed history

including that of my family (and of course, my daughters), she

informed me that it was one of the rarest forms of that disease, and

is not curable. Only the symptoms (like the spasms) can be treated.

She said my form was very much like having Multiple Sclerosis in the

sense that there would be remissions and exasperations (gets better

and worse); and if I went into remission, to enjoy it while it

lasted.

Finally! The disease had a name. Then I found out most people only

know about the mild form of the disease and demanded to know why I

was on crutches and not walking without them! OY!!!! Talk about

frustration!!! Having to explain to others made me wonder why no one

knew about the rarer side of the disease. So I investigated and

found that there are so few patients with the rarer form, that there

is no research being done. So, like MS many years ago, those of us

with this form of CIDP sit alone with few sympathizers.

I have little self-pity. I refuse to pity myself. I never allowed

others to treat me with pity either. Perhaps that is why I have done

so well with my disability. I continued to exercise; going to the

gym and working out on a balance ball (with a trainer who

volunteered to help) and on weight machines. I even dragged myself

onto a bicycle there and painfully pushed and pulled on those pedals

until I make the wheel go 'round! I didn't perspire, I sweated –

bullets of sweat! I would leave that gym on my crutches looking like

I jumped into the pool fully clothed. I went back three days a week

for some four years. I never stopped.

I bought a house in Texas (where I'm at now) and began to take a one

mile walk every day, crutches and all. Somewhere around October of

2006, I noticed my balance was better and my legs didn't hurt quite

as much. I started walking with a cane for short distances, and used

the crutches for the walks. Finally, in April, I went to the cane

full time!

The legs were hurting less, and my arms were feeling better as well.

By June, the majority of my symptoms were gone or fading fast. I was

in full remission, Thank G & #8209;d!!! I drove my car to Pennsylvania at

the end of June and drove back in July with my grandson.

I am still in remission, but my legs are beginning to hurt a bit

again, and the spasms have returned. But I am not going to weep if

this old disease returns. I have enjoyed my freedom, and look

forward to another remission, should I be so blessed. So far, I have

not had to return to my cane or crutches. It takes me longer to walk

my mile, and I tire a lot easier, but I am determined.

I have not had to return to my cane or crutches G & #8209;d has been good to

me. I have had great doctors, wonderful friends, and lots of fun. I

truly believe we are not given more than we can handle in this life.

Rather, G & #8209;d entrusts us with these obstacles so we can learn to

overcome them and help others. Overcoming, I have discovered, does

not necessarily mean getting well, but means making the most of it;

doing your best and not losing faith.

I believe I have helped others through my humor column and by

example. One thing definitely got better though, my faith. It is

stronger and I am more determined to keep learning more. After all,

if I can make it through this disease, I can do anything, G & #8209;d

willing.