Introduction & Early Stages

Latest Entry

Entries:

May 2002

Friday, May 03, 2002

There are few things I know for sure. But this I will say: sometimes the pain gets to be unbearable. And when that happens, emotions take over and thoughts enter your mind that can take you by surprise. Last night was one of those nights.

There I lay, in bed, wide-awake. Tracking the pain, as it went from burning to throbbing to pulsating and eventually back to burning. I would roll over once or twice, but that did not help. Nothing could at that hour. All I could hope for was to slip into a deep sleep and forget about everything. Instead I started to cry. It wasn't the type of crying you do in public when others can see you. It wasn't the type of crying you do when you want to convince your parents you're too sick to go to school. It was so much worse because it was so deep inside.

It's just so depressing to hurt the most during the night. The one place, and the one time you should be at ease and relaxed. The only time of day when the phone isn't ringing and you have the world all by yourself. This should not be when you hurt the most. I thought about my mom, and how she is always complaining about how rough her nights are, and I felt terrible. Her whole life she has not slowed down for even five minutes, and she deserves a good night sleep more than anyone.

And finally, exhaustion overwhelmed me and I slipped away. "I dreamt I ate a giant marshmallow and when I woke up my pillow was missing".

Tuesday, May 07, 2002

There is a place that I go when I do not feel well. It's a place that nobody knows about. It's a place that nobody could understand. It's my place and when I'm there, it's okay to hurt. It's a place where nobody asks me how I'm feeling. Nobody asks me why I walk the way I do. Nobody asks me to do something I can't and wish I could. This place of mine is where I can be myself and not worry about how I feel -- where I can just act myself and not account for my condition. It's a place where I am relaxed and usually, I feel better leaving than I did when I got there. At least usually I feel better about myself.

I'm in that place right now.

When you have had to live with what I do, you need to make this place in your heart, in your life. Without it you get defeated. It's not the best place in the world to be -- most of the time it's really lonely here -- but it sure is better than out there. Because in here how I feel doesn't matter. It is what it is. It's what I'm used to, and it's not a place to feel badly for myself.

This place comes in all forms and in all places. At all different times, sometimes better, other times worse. Right now this place of mine is 12:25 in the morning when I don't feel well enough to sleep. If it weren't for this place where I can be at ease, I don't think I'd make it through the night. Instead I get out of bed, turn on the computer, and just relax. Why fight it? I'm only going to lose this, so I might as well go with the flow, write about this place I'm in and wait until the time passes for when I'm feeling well enough to leave it. Maybe then I can go back to sleep. In the middle of the night all I have is time and pain. And nobody to share it with.

Sunday, May 12, 2002

Sometimes I see someone doing something and out loud I say "how in the world does he do that without it hurting?" It's as though I am looking through this arthritis lens – the only one I have seen the world with since I'm 13 – and I cringe at something that would hurt me but obviously isn't affecting that person. For example, on Friday Nina and I went out for a night out in Cambridge. After dinner at "Fire and Ice" and a stroll through Harvard Yard (more on that later), we grabbed some coffee and listened to musicians serenaded the streets of Harvard Square. We paused to watch one band in particular, as they were all set up, complete with a bass guitar, drums…the whole nine yards. They were playing what I assume was a song that they wrote, and two of their "groupies" (if you can call them that) were dancing in the middle. I use the word "dance" very loosely. They were really just jumping around all over the place, back and forth, bumping into each other occasionally, and losing their balance often. Out loud I said "oh my God how do they do that without being in pain?!?" This immediately prompted an "awww" and hug from Nina, but it really had nothing to do with getting sympathy. Nor was it about reminding her (or me) about my pain. It was a true reaction that sounded like someone's Grandfather. I went from 20 to 80 years old in five minutes.

As we walked through Harvard yard I remembered what life was like during the summer I spent there taking classes junior year of high school. I remembered who was important in my life, what my priorities were (wearing hats, looking cool, partying, and lying about my age) and what it was like to be filled with all of the hope that I had each night I went to bed. I guess it was apparent from the expression on my face that I was pretty upset I wasn't wearing crimson and living in one of those dorms again. Nina was quick to point out that had I gone to Harvard I probably would have been too busy to think up the idea of CreakyJoints, and I definitely would not have met her. Two points that made me feel better. The moral of the story is to never get too upset because life works itself out, and without these two things (among many others) in my life now, I can't imagine myself happy.

And on another note, anyone who ever doubted the possibilities of time travel has not been away at college – and enjoyed it. For me, it seems like I stepped foot in a time warp and fast-forwarded an entire semester at the blink of an eye. Unbelievably, the year is over, and I have already returned to New York to start my summer. But this will be no summer vacation of barbecue's, pool parties and days at the Jersey Shore (yes, we go to the Jersey Shore). Instead I will be harder than ever at work on CreakyJoints. It's what I do – and it's what I love doing. I get dizzy at the thought of all that I need to accomplish this summer, but relaxing and thinking about the fun I plan to squeeze in manages to help.

Despite what anybody says, I looked good in Crimson.

Tuesday, May 14, 2002

There are three types of heat in this world. There's the type of heat that when you go into a hot room you say "my, it's hot in here", but eventually adjust. There's the heat that Florida is known for, which feels like you're standing next to a jet engine and you're sucking up the fumes, losing five pounds in sweat per minute you're outside. And finally there's Phoenix Arizona heat. When the thermometer reaches 101 and for some reason, you just don't mind. Sure, you notice it, and of course it's irritating, but it's not like you've got a faucet under each arm. Instead you realize that for some reason, you are feeling okay – and for once it's because of the weather. That's Phoenix, and the six-hour flight back to New York gives me plenty of time to reflect.

I guess I'd have to say that my favorite part about this type of heat is the ability to air-dry after the shower. Five minutes is all it takes, and that's pretty good considering I'm such a hairy guy. And by air-dry I'm not referring to my hair. Okay so maybe there are other good things about the Phoenix area. Like the way I feel when I'm here. Since there isn't any humidity for 300 miles, my joints feel good. They mean it when they say it's a "dry heat". Read: "it's an arthritis-friendly heat". Maybe part of the reason I feel so good here is because I'm out of the crummy New England climate. That can be real torture for someone sensitive to a change in weather.

I almost didn't want to leave. The Arizona Visitor's Bureau couldn't have been any nicer to the CreakyJoints team, but I think it's because they just wanted to trade their cool vests for our even cooler CJ shirts. Good thing we come back June 19 for the A-Games we're holding here.

But it's back to New York today to turn around and head out to Memphis to host an A-Games on Thursday. Just enough time for a haircut and two loads of laundry. I am already longing for the day I can return to school and take two classes and do no work. By no work, Mom, I mean study really hard and pay attention to lectures. For now though, I'll enjoy doing laundry without paying $1.25 a load.

Tuesday, May 21, 2002

Back at home after another successful A-Games. The minute I stepped foot in Memphis, it all came back to me. From Charlie, the gate agent with U.S. Airways to the drive through downtown, it was clear that a city like Memphis is one you don't forget. This time I heard more Elvis in two days than I think in my whole life. But life could be worse.

I couldn't be happier with how the event went. We really changed lives, and it was clear from 9:30 a.m. until the end of the day. I went to bed that night with a feeling that I can't really explain. A feeling of accomplishment, but really of happiness that people were willing to try something new and for once, take a stand to improve their lives. Some of the folks that were in the program were pretty sick. I know one lady – a member of the "Dolly sisters" as I called them (there were 3 sisters participating, and rooting each other on) – had a laundry list of about 10 things wrong with her. That didn't stop her, in fact that was the reason she came out for the day because it was time that she did something about the way she felt. She quit thinking about her diabetes, her arthritis, this and that, and instead spent the day happy to be alive.

This made me feel great.

But ultimately it's not about me. I'm just the facilitator. The "host" of these events. These A-Games have evolved and I'm almost left to just watch the results. They're all about people helping themselves. We just do the legwork for them.

And so it goes. Next stop: Miami.

Sunday, May 26, 2002

Hard to believe Memorial Day Weekend is here. Now is when you buy that new car. Now is when you pick up the latest styles in the fashion world. This weekend is when you go head-to-head with the traffic and curse yourself at the mere thought of leaving your house. But for some reason no matter where you are or what you're doing, you can't help but think about where you were last year this time. I know that's what I've been doing lately.

Where was I? I marveled at the thought of how much more medicine I was taking a year ago. How crappy I felt all day and all night. How miserable I was, and how close I was to my wit's end.

This I know: I am not worthy for all that I have been blessed with. The improved (albeit slightly, though every bit helps) health, the success of CreakyJoints, the happiness I've enjoyed, the company of a few special people in my life. I am just not worthy of any of it.

I'll put another hot dog on the grill and drink to that!

Friday, May 31, 2002

People always ask me what it's like to be on the road so much at such a young age. "I love it" I always tell them. That is, until yesterday. The scariest thing happened to me. I woke up and had no clue where I was. I mean less than no clue. I didn't know what was going on. I was in a big, fancy bed and I didn't know where. I rolled out of bed and the first thing I did was have the good sense to check the phone book. Literally. I remember Lou telling me how he had to do that once, and the phone book was staring me in the face on the nightstand. So I had to refer to the phone book to see I was in Charlotte. Scary in a funny kind of way. Nothing I'm happy about. And for the rest of the day I kept forgetting where I was. Maybe it was a Carolinas thing? Perhaps because I don't golf.

The problem is that the week started in New York. From there we went down to Fort Lauderdale and then the next day to Miami for our A-Games event. From there we went directly to Charlotte and then back home to New York. So it's no wonder I didn't have a bloody clue where I was. I guess I was just tired from the event the previous day in Florida.

The A-Games program in Northern Miami was simply a hoot. I flexed my Yiddish muscles quite a bit, managing to pull about 25 words into my vocabulary, each one for a funnier joke than the last. It was the best way to connect with everyone's mother and father who had moved down from Cleveland or the Bronx or Hartford for their blood to eventually thin out. There is no question we made their lives better. Nana would have been proud. The ladies were wonderful, as were the men. Of course the men did everything that the women said, and didn't actually have a chance to do any speaking. But that didn't seem to bother them. I guess that's what they're used to around there. Seriously.

And anyone who thought there was no such thing as a free lunch has never been to the A-Games in Miami Florida. We served a little under 400 people lunch (two seatings, actually), one set at 11:45 and a second lunch (or dinner) at 1:30 with standing room only. Two doctors spoke in between my comedy set straight from the Catskills. I brought the house down.

Poppy would have been proud.

It's only a matter of time until I'm down in the area again, helping my parents move their stuff into the Boca Vista. Isn't that what has to happen?