“How do you do it, James?”
Many, many people have said that to me over the last eight years as I’ve raised well over one hundred thousand dollars for people with Muscular Dystrophy. They’ve also asked, “Where do you get the energy?” or “Why devote your waking and sleeping hours to this cause”? I want to attempt to answer this question and motivate you, the reader, to do something.
Anthony wrote how it felt to be a camper, and it’s his blog, so if this never gets published, that’s his choice; I am a guest. However, I felt a need in my gut at 2:15 in the morning to just pour this out of my heart and describe to you what it feels like to get involved.
We all have busy lives, so many things to do, not enough time to do it in, with no guarantee for tomorrow, because no matter what your personal beliefs are, death happens to all of us at some point. Some people choose to be passionate about saving animals, or saving the environment, or conditions that touch a wide variety of people like cancer and heart disease. That’s wonderful, and if you tell me there’s a child dying from cancer, I’m going to try to help, even if all I can do is pray from 3,000 miles away.
For me, my passion is helping
those with Muscular Dystrophy.
Here I am, a young man with Cerebral Palsy, an all together different condition that was chronic and not fatal. I have a normal life expectancy, the only thing I can’t do is walk independently – and there’s a chance I might be able to walk one day.
Muscular Dystrophy is genetic and usually fatal, sometimes taking the lives of small children, never mind teenagers or adults as well, and the muscles weaken over time until the heart, the biggest muscle, dies from something like the common cold.
The things I and those with Muscular Dystrophy had, and will always have in common, are the same dreams and desires, the same wanting to be accepted, similar operations and hospital stays and physical therapy that brings the kind of a pain a seasoned weightlifter could only dream of, and the same braces and wheelchairs.
Imagine you are a little boy or girl
with Muscular Dystrophy or Cerebral Palsy.
When faced with something like Muscular Dystrophy or Cerebral Palsy, you basically have one of two choices – cry and give up, or fight through the physical, emotional and mental pain just to live. That pain extends beyond anything the average able bodied person can imagine. When you move your limbs, if you even can, you’re reminded – “Woah, my body isn’t working properly, so I have to adapt somehow.” Every single day, you’re in a wheelchair, or have to use crutches to get around, or wear braces, or in some extreme cases, wear bunches of special tubes hooked up to hospital monitors. Swinging your legs out of bed may take every fiber of your being, or you may not even be able to do that without help. Something an able bodied person can do very easily – dressing yourself, eating, showering – takes longer to do with both CP or MD, and requires partial or complete help.
Since there aren’t many disabled children at your average school, you may feel left out, trying desperately to not only find your identity or where you fit in like everyone else, but also having some kids look at you like you’re an alien from Mars. With time, kindness and a little understanding, you and your classmates almost always accept each other, but the image of them playing and you not being able to go on the playground because no one in the community decided to make the playground accessible, for instance, leaves a scar you may never fully heal from as you grow. That’s not even taking into account the medicine, the physical therapy, the surgeries, your wheelchair or walker – it’s quite expensive, but thank goodness, as long as you have a supportive family, they’ll do anything to see you get better.
There are times of extreme isolation, hopelessness, despair and sadness to even the most optimistic person who can get around in their wheelchair in public – this proves you’re human, and believe me, it takes a special kind of human to juggle it all with a smile.
Finally, if you have Muscular Dystrophy and are in this situation, unlike Cerebral Palsy, your body gradually gets in worse shape no matter how hard you try to exercise and eat properly, to the point where the body just shuts down. Unlike cancer, where there’s usually some kind of remedy, if you have Muscular Dystrophy, there are some experimental treatments, but they are very few and usually temporary. Currently, there is no cure for any of the 40 related diseases that are grouped together and called “Muscular Dystrophy”. Just like life, Muscular Dystrophy is a game of “Survivor”. Only, there’s no cameras, no “tribes”, no million dollar prize if you outplay your opponent – because your opponent is time, ticking away. You have to live every day like it’s your last, and mean it.
This is exactly why I decided to support
my local Muscular Dystrophy Association camp.
It’s also exactly why I have since added a separate camp from the Jett Foundation for Muscular Dystrophy for the teens and adults with it. It is in fact an inner kind of cure that lasts for one week of every year. The doctors, pharmaceutical companies and governments of the world may not call it a “cure”, but seeing the smiles on every single child, even those who at first cry when their parents leave them at camp, I am convinced that these camps are the closest thing we have to a cure in 2012.
A funny kind of irony struck me as I started on this fundraising journey in 2005, after being a volunteer for the MDA since 1999. At the time, my mom was battling terminal cancer (she died in 2006), and no one in my high school was doing anything specific to benefit the community. Sure, we had car washes and bake sales for clubs and sports teams, but nothing that really directly touched the lives of other people. So in January of that year, I decided that I wanted to help send children with Muscular Dystrophy to camp. I figured we would send one child, but to my surprise, the passion inside of me came pouring out each day of the month long campaign that I orchestrated, and we sent four children.
Then I went to camp and saw the
money my classmates raised, at work.
I knew I had done the most beautiful thing in my life when a little girl rose from her wheelchair, carefully, gingerly walked towards a brand new car we had brought to show the campers, got in the drivers seat, and used every ounce of strength in her body to honk the horn. That image of freedom, liberation – of being like most of the rest of the world – able bodied – has stuck with me all these years.
I went to a traditional camp designed for able-bodied children. I wish I had gone to a special camp like MDA’s or Jett’s, where you could do everything from your wheelchair. In some cases, you can do things without your wheelchair – yes, you, the child in the wheelchair who until camp only dreamed of swimming – guess what? You’re floating! No wheelchair, no restrictions – freedom.
When people ask me, “Why do you volunteer nearly the entire year, and you don’t get paid (yet, anyway, because no one has offered me a paying job, so far) to do this?” I need only show them a child with Muscular Dystrophy swinging a baseball bat and rounding the bases in his or her wheelchair, and then, the reality, and sometimes the tears – hits that able-bodied person just as much as it does the kid who is in the wheelchair at camp.
When I, with my Cerebral Palsy, get frustrated to the point of wanting to punch the nearest wall because I couldn’t go outside my house on a beautiful summer day, I only need to remind myself of these images of those kids with Muscular Dystrophy. I not only thank whoever created the universe for my luck, but I sit and try to imagine, based on my similar experience, the pain and the agony of these kids and adults for 51 weeks getting washed away with a single shot of a over sized soccer ball into a net, and then I think of the parents and brothers and sisters, relatives and friends who one day might have to say goodbye to that child, brother, sister or friend of theirs who had Muscular Dystrophy, and how they can remember the one who passed away having such a fun time with other children like them that summer they went to camp.
So despite Jerry Lewis, my idol, temporarily resting from being the one who reminds the public about these children every year, despite the economy, despite everything and anything anyone else says or does – as long as those children get to be more like children and less like an outcast sheltered from the rest of the world, I will personally commit myself to sending them to camp, the one place where they tell me out of their own mouths they feel some relief from their pain.
So for those of you wondering – that’s why I do it. I do it day after day, month after month, year after year, and I do take “breaks” during the fall and winter, I do “take care of myself” by buying material things like everyone else. I, however, get the most joy from giving a piece of my childhood, which at times, was a “lost” childhood because of the hospital stays and the therapy, back to these kids.
My part is the “hard” part. I plan how to raise the money in various ways, I execute the plan with the help of MDA and Jett, they take care of handling the money, and they don’t send the parents a bill for camp, either. Those kids go for free because people like you do the “hard” part of opening your wallets and giving people like me one dollar, five dollars, fifty dollars. So far this year, it’s added up to 26 thousand dollars. If I share my story, maybe on Labor Day (September 3rd), when I rest until next year, we can get to 27 or 28 thousand.
If you believe in a human being overcoming his disability to show the rest of the world, and these campers, what abilities they have by focusing on the positive – if you believe that every child has the right to be able to do everything their heart desires, regardless of any obstacle.
Please go and donate to MDA camp and Jett camp
on my website – http://www.mdactkids.org.
Yes, these are 2 of about 80 similar places in the United States, with kids you might never see in person, but by you giving, we can maybe fund all 80 one day, if we have to. Maybe the parade I’ve been leading for freedom for these kids will grow larger and larger so more kids go and it’s longer than one week each year. We won’t know until we try. So let’s try.
Yes, you, my friend, can be Superman or Superwoman too.
You can be a Superhero with just the price of a Big Mac or a cup of Starbucks, and not the price of a new car. (If you have the Powerball jackpot, I want to hear from you too).
So, be a superhuman and give the gift of life through a beautiful experience at camp now that will give them the confidence and courage to face whatever life brings them, both good and not so good. By giving, you’ll feel like a super hero – because to these children and adults – you ARE their superhero. On behalf of these living, breathing miracles that go to camp every year because you give them that chance by giving a dollar or two.
Thank you from the bottom of my heart.