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. I used a 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 do not have time to play games; that answers the second question: there is no cure. Aside from one medication that is alleged to slow progress, 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 do I get this? Theories include exposure to environmental chemicals, a virus, or even stress. Was it when I fell from a chair I was standing on, changing while not changing the cause, they will be closer to the cure. I will 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 Most ALS patients die within two to five years after sunset of symptoms, some sooner, some later. My clock was ticking and my dreams died.
To say that ALS / Lou Gehrig & # 39; 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. Occasionally my diaphragm muscles will need to 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 I do not know how many tomorrows will be there for me. Does anyone really really know What?
It was 1986 and he had out had 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 How romantic, I thought at the time. What would I do if I have told I only had a few months to live? I always rented a list around in 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 & # 39; s Hermits back together to sing for me. When you 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 fam I can not afford a trip. I can not afford a trip. 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 despite every day is a gift, I have no time to waste. I move very slowly these days, but yet I have to move quickly.
I have slowed down and stop to observe, to watch and yes, to to watch and yes, to I can not be be pureed, blended or liquefied, I can "eat" it. I sit and think and I keep an online journal, a blog, and I have a loyal readership.
I remain a lifelong learner and I still love to read, argument politics, do word Always independent, I have had to learn to accept help. It is true that "you find out who your friends are" when you They are okay with seeing me in a wheelchair, or listening to my new robotic voice. They Do not feel guilty chomping on steak or rocks, 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 I 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.
