Everyone always asks the same questions: first, they want to know how I got it. So they want to know what can cure it. And the hardest question of all: “When did you first notice something was seriously wrong?” Just four years ago, I was biking all over New York City, exercising regularly, actively socializing, doing art, doing crafts, and teaching Spanish and French at a high school in the downtown East Harlem neighborhood. town. I am now confined to a motorized wheelchair and need help dressing and showering. I can’t speak anymore, not with my own voice anyway. I use an augmentative communication device, an “aug-comm”, to speak. I write 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 deadly disease. And that answers the second question: there is no cure. Aside from a 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 the 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 for when I noticed something was wrong, well that’s tricky. When did it all start? Was it when I fell out of a chair I was standing on, while changing the bulletin board outside of my classroom? Several months later, I could barely get through a meal without coughing, seemed to have an asthma attack after every workout, could barely get up from a chair, tripped or fell every day, and slurred like a drunk in a row. This was not stress or premenopause. I went to the experts and the prognosis was grim. Most ALS patients die between two and five years after the onset of symptoms, some earlier, some later. My watch 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, many of the changes are obvious. But some are very subtle, you only notice if you knew me before ALS, before this progressive and fatal neurological disease began to systematically kill my motor neurons. Over time, the muscles of the diaphragm will weaken to the point where I will no longer be able to breathe on my own. I want to do some things that I put off for “someday”, because I thought that tomorrow would always be there for me. We all do. “Do not leave for tomorrow what you can do today”. I only have today; I don’t know how many mornings there will be for me. Does anyone ever really know?
Years ago I worked with a man who received a dismal diagnosis; It was 1986 and she found out she had AIDS. In those days, AIDS was a death sentence. Although he still had some strength, he decided to collect all his assets and go around the world. He did and then came home to die. How romantic, I thought at the time. What would I do if I was told that I only have a few months to live? He always kept a list in his head: he saw the places he had 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. Somehow I would get Herman’s Hermits back together to sing for me. He would have lunch with Yoko Ono. When I came back down to earth, my list also came down to earth: writing the book that has been in my head for years, finishing collages and unfinished mixed-media projects in my closet, living in Manhattan, doing something to improve the world, finish my family tree. The problem is that most of us learn that we have little time when we are too weak to do something or die suddenly. In my case, I tire easily and medical expenses have drained my finances. I can’t afford a trip around the world. However, I am fortunate to have hands that can still operate a keyboard, and the doctors tell me that my disease is progressing rather slowly. I have been living with ALS for three years and although each day is a gift, I have no time to waste. I move very slowly these days, but I still have to move quickly.
But a slower pace has given me a new opportunity. Listening was not one of my strongest assets; my mouth always went. In fact, I let other people do the talking now. I have slowed down and I stop to observe, to look and yes, to smell the flowers. Now that I can’t chew and swallow like I used to, I’ve gotten a lot more creative with food. If it can be pureed, blended or blended, I can “eat” it. I sit and think and write (or, in my case, write). I keep an online journal, a blog, and have loyal readers.
There are many things that ALS has not changed. I’m still the same person inside. The only thing ALS saves is intellect, and mine is still there. I am still a lifelong learner and still love to read, discuss politics, do word puzzles, and watch TV and good movies. 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 a disease like this. Many people I took for granted have gone off the radar. But now I have a circle of special people around me, who agree to see me in a wheelchair or hear my new robotic voice. They don’t feel guilty chewing on steaks or ribs while I sip a yogurt shake or 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. Now I have a different perspective and sometimes it almost feels like I have a different set of eyes, because I see things that I have never seen before. Or maybe I never slowed down enough to watch, to take it all in. ALS took away some of my abilities, but gave me new avenues of expression. I guess that’s why I write, something that I was going to do one day. Someday is here, someday is now.