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