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Good Morning, Anita.
If you get a chance to read this before Tuesday, please don't share it with anyone until Wednesday. I hope everyone understands. Here is something else, so maybe those who don't, will.
The following is my version of an article in the ALS Digest
called, "The Attic."
September, 1996
I thought maybe it was time to take you on a tour inside My World. I don't usually take people there, but sometimes I meet someone who doesn't understand what my life is like, or thinks that my wish to die is just giving up. It tells a story of what has happened to me. The story isn't so much about knowing I am going to die as about having to go on living until I do. It is about being handicapped, but it has nothing to do with handicapped parking spaces or accessible bathrooms. And, although up to this point my life has been very blessed with a good family and even better friends, both have been overshadowed by ALS. And My World is all about losses.
Who I Was
I believe that most people's identity comes from what they do for a living as well as hobbies and interests. As for me, I was a writer and producer for a radio syndication company [ProMedia Radio Networks, later SJS Entertainment Creative Services]. I wrote comedy that played on stations nationwide. I miss the work, the constant pressure, New York City, and most of all I miss the people I worked with. Luckily, we still keep in touch through the computer. But when I hear of the bits they're writing, or a funny idea they're putting together, I long to be a part of the creative process again...
I miss the pissed-off look Anita used to shoot my way when I would constantly throw the tennis ball against the studio door. I miss Mike yelling at me when I would tease him. I miss reciting Monty Python skits with Frank. I miss correctly predicting Frank's behavior for Mike and Anita. And I also miss me, who I was. The writer/producer that [Anita] so eloquently described as "The only one who knows where all the bodies are buried." The one that Frank, Mike, or Anita came to when they needed an effect for a bit or needed to know what date a bit was produced. The clown who could get Mike Cabot, the impressionist, cracking up just by saying the word "tits." The one who kept calm as the clock kept ticking, reminding us that the deadline was closing in. A respected, productive, irreverent team player. One who never did his job for the money, but for the love of the work. That is who I was for 10 years!
Before my diagnosis, my hobbies were skiing, playing baseball, and working out. I went to the gym every morning from January of 1990 to December, 1994. There was nothing better or more fulfilling than running. I would get a runners' high every morning as I cruised my 3-5 miles. Every once in awhile another member of the gym would join me. I would consider it a compliment when other members would challenge me on the track. After I ran, I would lift weights for an hour and a half. I wasn't big or muscle bound. I was cut and well-defined. Now there's not a single ounce of muscle tone on this disease-filled body.
Every weekend from November [through] March, my buddies and I would go skiing. And, once a year, for a week we'd go away together on a ski vacation. I began skiing when I was 25. I took to it right away. To me, skiing was as close I ever came to flying. I recall so many days being on top of a mountain in Utah, Colorado--even Hunter Mountain [New York]. I'd get off the lift, inhale a giant whiff of the cool air, take in the beauty of my surroundings, and just think to myself that this was heaven. Well, there will be no more skiing. But I really don't know what I'm missing more, the skiing or all the laughing Andy, Pat, John, and I did in the car on the way to the mountain.
During the spring and summer we'd play in a hardball league. Thanks to ALS, those days are over also. Unlike skiing, baseball was more like a job. The intense pressure gave me such a rush.With lots of practice and money spent at the batting cage, I hit above .300. I remember Big Bob, the captain of our team, coaching third base. When I'd step in the batter's box, Bob would give me such a look of confidence. He'd say, "C'mon now, Philly! You know what to do with it!" From our bench I'd hear Pat shouting, "It's all you now, Seven! C'mon now, Philly Kid!" Then Andy's voice would ring out, "C'mon now, Seven! Let's go, Kid! Then usually after fouling off 6 or 7 pitches, I'd get an outside pitch and poke it down the third-base line for a base hit.
I still can't even comprehend the fact that I will never hit or throw a baseball again. And any future plans I had of teaching my nephew how to play baseball or ski are totally out the window. That's what really hurts most.
What I Have Become
With 'round the clock nurses, I don't have much privacy in my life anymore. I don't mean just physical privacy. It is an invasion of privacy to have someone else dress you, feed you, wash you, slip a bedpan under your ass, then roll you over to wipe you. Like a piece of furniture that people are careful not to drop. I have never felt so much like an object as when people have to pick up my lame body and move me. Never did I think I'd be at the mercy of anybody the way I am now. It is during those times that I use my imagination, step out of my body and observe, in disgust, what I have become. Even a convicted felon has the option to at least try and escape.
Who I Will Be
In My World, there are no hopes or dreams for tomorrow. The control I once had over my own body, my home, my freedom to make choices, come and go as I please when I please--my idea of marriage, kids, the kind of love I hoped to have, and my privacy. All lost to ALS. Someone once remarked that the ongoing nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out paralyzed. Obviously, that is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS, you no more than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only the tip of the iceberg. You lose so much more. Independence, self-sufficiency, and self-worth are just a few.
Maybe now you'll understand. But, I think you have to first "fall down in my shoes" to truly understand what I am saying. Although I sure hope you never have to.
<snip>
Adiosage, Tootsie!
Love, Phil
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