How ALS – Lou Gehrig's Disease Changed My Life
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Everybody always asks the same questions: First, they want to know how I got it. Then they want to know what can cure it. And the hardest question of all: "When did you first notice something was very wrong?" Just four years ago, I was riding my bicycle all around New York City, working out regularly, actively socializing, making art, crafting, and teaching Spanish and French in a high school in the inner-city neighborhood of East Harlem. Now I am confined to a motorized wheelchair, and need help dressing and showering. I can no longer speak, not in my own voice anyway. I use an augmentative communication device, an "aug-comm", to speak. I type out the words, which are then "spoken" by a female voice that is clear, if a bit robotic.
I answer these questions honestly because I don't have time to play games; ALS is a fatal disease. And that answers the second question: there is no cure. Aside from one medication that is supposed to slow progression, I take pills to relieve symptoms, which include stiffness, painful muscle spasms, depression, and "emotional lability", the name for sometimes-embarrassing episodes of uncontrollable crying or laughing. How did I get this? Theories include exposure to environmental chemicals, a virus, or even stress. When researchers determine the cause, they will be closer to a cure. As to when I noticed something was wrong, well, that is complicated. When did it all start? Was it when I fell from a chair I was standing on, while changing the bulletin board outside my classroom? Several months later, I could hardly get through a meal without coughing, seemed to have an asthma attack after every workout, could hardly get myself up from a chair, tripped or fell every day, and slurred my speech like a skid-row drunk. This wasn't stress or pre-menopause. I went to the experts, and the prognosis was grim. Most ALS patients die within two to five years after onset of symptoms, some sooner, some later. My clock was ticking and my dreams died.
To say that ALS / Lou Gehrig's Disease has changed my life is an understatement of epic proportions. Sure, a lot of the changes are obvious. But some are very subtle, only noticeable if you knew me before ALS, before this progressive and fatal neurological illness began to systematically kill my motor neurons. Eventually my diaphragm muscles will weaken to the point where I will no longer be able to breathe on my own. I want to do some things I put off for "someday", because I thought tomorrow would always be there for me. We all do. "Don't put off until tomorrow what you can do today." I only have today; I don't know how many tomorrows will be there for me. Does anyone really ever know?
Years ago I worked with a man who got a grim diagnosis; it was 1986 and he found out he had AIDS. In those days, AIDS was a death sentence. While he still had some strength, he decided to cash in all his assets and take a trip around the world. He did it and then came home to die. How romantic, I thought at the time. What would I do if I were told I only had a few months to live? I always carried a list around in my head: I would see the places I have never seen, like Austria, Germany, the South Pacific, the Andes. I would go back to places I have already been, and loved: Ireland, England, Scotland, Japan, the Caribbean. I would somehow get Herman's Hermits back together to sing for me. I would have lunch with Yoko Ono. When I came back down to earth, my list also came earthbound: write the book that has been in my head for years, finish collages and mixed-media projects that sit unfinished in my closet, live in Manhattan, do something to improve the world , finish my family tree. The problem is that most of us learn our time is short when we are too weak to do anything, or die suddenly. In my case, I tire easily, and medical expenses have depleted my finances. I can't afford a trip around the world. However, I am blessed with hands that can still work a keyboard, and the doctors tell me my disease is progressing rather slowly. I have been living with ALS for three years and although every day is a gift, I have no time to waste. I move very slowly these days, but yet I have to move quickly.
But a slowed-down pace has afforded me new opportunity. Listening was not one of my stronger assets; my mouth was always going. I actually let other people talk now. I have slowed down and stop to observe, to watch and yes, to smell the flowers. Now that I can no longer chew and swallow the way I used to, I have become much more creative with food. If it can be pureed, blended or liquefied, I can "eat" it. I sit and think and write (or, in my case, type). I keep an online journal, a blog, and I have a loyal readership.
There is a lot that ALS has not changed. I am still the same person inside. The one thing ALS spares is the intellect, and mine is still there. I remain a lifelong learner and I still love to read, argue politics, do word puzzles, and watch television and good films. ALS has taken away my ability to speak, but not my voice. Always independent, I have had to learn to accept help. It is true that "you find out who your friends are" when you go through an illness like this. Many people I took for granted have fallen off the radar. But I have a circle of special people around me now, who are okay with seeing me in a wheelchair, or listening to my new robotic voice. They don't feel guilty chomping on steak or ribs, while I drink a yogurt smoothie or a meal-replacement shake. They have patience, because everything I do is in slow motion. "Life is too short" has taken on a whole new meaning for me. I have a different perspective now, and sometimes it almost feels as if I have a different set of eyes, because I see things I never saw before. Or maybe I never slowed down long enough to observe, to take it all in. ALS took away some of my abilities but gave me new outlets for expression. I guess that is why I am writing – something I was going to do some day. Someday is here, someday is now.
By Fern Cohen