The Lesser Known Side of Ed McMahon

Photo: www.mda.org

Say It Ain't So

MDA camp has been canceled this year because of the swine flu. This is devastating news to so many campers that live for this week. The concern is that many campers have suppressed and weak immune and respiratory systems, and they don't want to take the chance of potentially infecting any campers. I guess there have already been several cases where campers have been infected at this year's camps.

My old camp was one of the remaining camps that has been canceled. What a monumental let down. I guarantee, given option to go regardless, most campers and parents would take the risk... That is how much this camp means to these kids.

MDA probably did the right thing... but... Man what a huge decision to have to make. The reality is some campers will die before next year. This is truly the most important week of the year for most of them. You can't understand it, unless you see it or experience it first hand.

A Young Parent's Resolution

Saw this on Post Secret a couple weeks ago:

This post tears me up a bit. The infant form of Spinal Muscular Atrophy is the most deadly form of muscular dystrophy. Originally, I was diagnosed with the juvenile form of SMA (not as serious, not deadly). But as I got older it was determined that I did not have SMA.

I am guessing this parent probably knew nothing about SMA or MD before this rocked their family. Much like my family... And I image it is much harder on the parents than the kids. The kids don't know anything different, but the parents can grasp the reality of the situation and are forced to navagate through the rocky sea. That's a tough place to be... I can't image.

Thankfully MDA is there.

RS Eagle Soar

Man, I can’t believe it’s been three years. How time flies, and how we have a way of putting some things out of our minds…maybe some things are better there, though, at least for a while.

I got a call around 8:00 am or something. For some reason I feel like it was a Tuesday. I was still sleeping. I had been spending endless hours working on my thesis. I would go to bed and stare at the wall across the room, mind spinning about a billion things, mostly though, looking back on it, it was fear of finishing my thesis. Anyway, I would be up late and when I would finally get to sleep I wouldn’t set my alarm unless I had to… Well one was set for me that morning; and I knew why she was calling as soon as I saw that it was Wendy.

I met Ramon at MDA camp when we were probably about 6… well I was, he was about 8 or 9. Mexican, slicked back hair and a rat tail. He had a chair but would still try to walk and stand. Ramon and I weren’t friends at first. My friend/rival was Ray, and Ray and Ramon were camp veterans and they often let me know it. Ramon was in cabin #1 and Ray, Bobby aka “Jellyfish”, and I were in cabin #2. We shared a lobby with cabin #1. Often times we would play hockey in the lobby during “rest period”; Ramon and Ray against me and Bobby. It was often very competitive, in fact, there were never any winners because we would often end up yelling at each other. When you are a kid sometimes loyalty runs thin. There was some issue that arose during one of the hockey games and all of a sudden the tides changed and it became me and Ramon against Ray and Bobby… and the friendship was born.

Years passed, and I watched my friend gradually decline. Every year, Ramon was not able to do something he had done the year before. It progressed from him not being about to walk or stand anymore, to him not being able to move his chair, to him not needing braces anymore because they were of no use, to him not being able to hold the hockey stick or swing the bat, to him not being able to feed himself, to him not being able to drive his chair unless his finger was placed on the joystick by someone else, to him not being able to breath without a vent.

But to know Ramon, you knew that it didn’t faze him. He wasn’t proud, he wasn’t insecure, he wasn’t worried or down on himself. It was as if somebody forgot to tell Ramon that he had a death sentence. His optimism was remarkable.

Me, being the unfortunate realist and vector of pessimism that I am would often wonder how he could be so optimistic… of course my pessimism and thoughts were firmly stowed away in my head until now. I remember one time in our teens, just the guys, talking big, and I remember Ramon saying something about kicking somebody’s ass. And I remember how sobering that was to me. How physically impossible that was, but yet I realized that Ramon had found a way to live a life without limits through others… For some reason that moment sticks in my mind.

As we grew into our late teens camp started to mean something different to me. I have talked about this in another blog. Reality was starting to sink in. I think I was about 17 or 18. It was summer and camp was just around the corner. I had heard that Ramon was in the hospital and they weren’t sure if he was going to make it to camp. Well, going to camp is about the best cure for anything, and I knew Moner would be there. But, the first day of camp rolls around and no Moner. The word was that he was still trying to come but not sure when. Tuesday, Wednesday, no Moner. The word was that he was going to make it to prom on Thursday. Being the sly guy that he was, he had already arranged a date for prom before he even made it to camp.

The week was weird for me. My partner in crime was not there. I was worried about him. I knew that he had a trach put in and that he was on a ventilator. This was very unsettling for me because it was such a step in the wrong direction. I had such mixed emotions about seeing him.

It was Thursday and he wasn’t there yet. Noon rolls around, afternoon activities wrap up, everybody is getting ready for prom, we have dinner; and no Moner. Everybody had made their way to the dance. I am anxious. Was he going to make it?… Finally the van pulls in. He made it.

But, to add to the frustration, there was one more hurdle to cross. As the van tried to turn around it bottomed out on a rock and got stuck in a precarious spot. There was no way to get Ramon out because it was bottomed out on the side that the lift was on. I remember the frustration and even anger. My long time friend Stan and I walked down to try and get help moving the van. The frustration boiled over and I remember Stan saying “all the kid wants to do is to go to fucking prom”. It was obvious that he too, was unsettled about whole situation…

Finally he it made to the dance floor… He was having a great time. But I was having a hard time seeing my friend attached to a ventilator. It was really, really hard for me to put that aside, knowing that this was pretty much the last step for him… But once again, somebody forgot to tell him…

Years passed and Moner and I stopped going to camp. He had finished school and worked at Camp Fish Tales, a camp started by former MDA campers that were too old to go to MDA camp. He seemed to be doing well. He had a lot of pride in Fish Tales. To some extent it gave him a purpose. I saw Ramon for the last time in 2003 at Fish Tales before I moved to Florida.

We talked once in a while by phone over the next couple of years. I had heard that he had been in and out of the hospital. In August of 2005, I was in the lab and I got a call from him. His voice was barely audible; “I am getting married” he said “and I want you to come”. Well it turned out that I had been debating whether to go home for another wedding the same weekend that he was suppose to get married. So hearing that news made my decision for me.

Well it turned out that she got cold feet. I went home for the other wedding and I missed out on meeting up with him while I was there. Two weeks later Wendy called; “Ramon passed away”. I said ok… but still haven’t processed it…

You go where I go…

It is the greatest of all advantages to enjoy no advantage at all.

- Thoreau

Jerry

By The Numbers:
82 - Years old
58 - Years as the National Chairmen of MDA
43 - Telethons
65 Million - Dollars raised on this year's telethon
2 Billion - Dollars raised for MDA in 43 years

We had these mandatory online discussion boards for this humanities class I had at MSU. One of the questions was about social icons... I put it off til the last minute like I do everything. I couldn't really think of a social icon... well I ended up writing this thing about Jerry Lewis and it turned out to be the thread of the week. The teacher used it as a example in class.

I wonder if I would even watch the telethon if I wasn't one of Jerry's kids. I wonder if I would be as empathetic or sympathetic if I was normal. Maybe I would be, but probably not to the people that deserve it...

I have been saying for years that it would be a dream come true to go to the national telethon to see Jerry. Every year after telethon I say that I am going to go the next year... but never do... I made a half-assed attempt to inquire about going this summer. I did find out how to find out though... so maybe next year if...

A Special Place

Seventeen weeks of my life I spent in a secret place; a magical place. It was a place where dreams really did come true. Though those that knew me in my everyday life didn’t know about this place, nor did they, or could they understand the profound influence it had on my life. Growing up, the highlight of my year was going to MDA camp.

As a child MDA camp was a place to go to be normal; a place without limits. A place where the impossible became possible. A place where kids confined to wheelchairs could go swimming in the lake, boating, fishing. A place to dance... The memories play in slow motion like a slideshow set to the song “love can build a bridge”.

As I grew into my late teens I switched from being a camper to a volunteer. I didn’t need camp to break down any physical barriers for me anymore… but it was important that I be there to help break down those barriers for my friends. We started going to camp at the age of 6… we grew up together. I always felt a sense of guilt that I never got worse… but my friends did. Some of the long-time volunteers used to tell me how important it was that I be there… that seeing me seemingly beating the disease was inspiring to my friends that were losing their fight. I never felt that way. I didn’t want to be inspiring, I, like the others wanted to be normal; not an all-star athlete or a guitar hero, just normal. I was almost normal, but not. I vividly remember one friend, Robert, asking me out of the blue why the disease hadn’t progressed in me; as if I was stronger than him, or if there was something that I was doing that he wasn’t…not that I was just lucky… He died the next year just before camp; his sister wrote a note to us telling us how much he loved camp and how it lifted his spirits every year. One of the older volunteers read the note to the newer volunteers in the cabin so that they could hopefully realize how important this week was to the campers. I never went to his funeral, never acknowledge his passing until the first words of the letter were being read. Then it poured out. We know the fate of most of the campers at camp years ahead of time... But it doesn’t make it any easier.

The older I got, the more I was able to control my emotions. Camp is an emotional place and leaving every year was hard. I remember the first year that didn’t cry when I left camp. I actually felt more upset that I didn’t cry. What did it mean? Was camp not special anymore? Camp was still special. But for me it had lost its innocence. As my generation of campers grew older the harsh reality of life could not be avoided. While it took the letter to come to terms with the loss of Robert, I still haven’t acknowledged the loss of my longtime partner in crime Ramon… The time has come though... in a couple weeks I will tell Ramon’s story, with the much needed closure.

For years at camp we referred to the real world as the other 51 weeks of the year. But for many campers MDA camp is their only chance to experience the real world, to feel normal, to come off the sidelines and be in the game. Camp is the real world. Camp is what is good in the world. In one special week everybody at camp—volunteers and campers alike--are exposed the deepest depths of humanity. You find in you the compassion, love, and spirit of life.

Today I experience camp through my mom. For about 6 or 7 years she has closed her beauty shop for the day and taken her employees to camp to cut hair for the camp prom. Prom is probably the most important night at camp. Most of the kids don’t get to go to their high school prom. So this is their opportunity to get dressed up, get their hair done, and dance. I am proud of my mom for doing this. I think she understands the importance of camp to everybody, and I think she recognizes how important it was in my life. I think this is her way of giving back and being close to me.

So tonight my thoughts are with the campers cuttin’ up rugs on the shore of Lake Huron.