How ALS Changed My Life Article Abstract

Everybody always asks the same questions: They want to know how I got it. Then they want to know if there is a cure. And the hardest question of all: “When did you first notice something was wrong?”  Four years ago, I was riding my bicycle, exercising regularly, socializing, crafting, and teaching Spanish and French in a high school in East Harlem. Now I am confined to a motorized wheelchair, and need help dressing and showering. I can no longer speak. I use an augmentative communication device to speak.  ALS is a fatal disease; there is no cure. I take pills to relieve symptoms, like stiffness, painful muscle spasms, depression, and “emotional lability” --embarrassing episodes of uncontrollable crying or laughing. The cause? Theories include exposure to chemicals, a virus, or even stress. Without knowing the cause, it is difficult to find a cure.When did it all start?  When I fell from a chair I was standing on, while changing the bulletin board outside my classroom? Months later, I could hardly finish a meal without coughing, was short of breath 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. Most ALS patients die within two to five years after onset of symptoms. My dreams died.

To say that ALS  changed my life is an understatement. Many changes are obvious; some very subtle, only noticeable if you knew me before ALS. Eventually my diaphragm muscles will weaken and I will no longer be able to breathe. I want to do things I put off for “someday”.   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. The problem is that most of us learn our fate, when we are too sick 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. Although every day is a gift, I have no time to waste. I move very slowly these days, but that slower pace has afforded me new opportunity. Never a great listener, I actually let other people talk now. I stop to observe, to watch, 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 todo some day. Someday is here, someday is now.