Friday, March 18, 2011

MDA summer camp

I used to volunteer for things, like MDA summer camp. I only had the opportunity to do this for two summers in Eastern Washington before moving back to Western Wash. and losing my MDA contacts. I was reminded of that life-changing experience today at lunch. Apparently one of our seniors, Camille Brown, is involved with MDA summer camp this year for her senior project.

Medical science has vastly improved things for kids with MD, but various forms of it are still torturous death sentences with life expectancy to the early 20s at best. For many, the greatest span of their few years will be spent in a wheelchair. If you can be part of bringing some joy to a person afflicted with a dystrophic disorder, I believe you will make the world a better place. It’s not world peace, it’s not even helping stem poverty, but if there’s any such thing as karma or kismet or the Golden Rule, the balance sheet of good works could always use more on the happy side.

My experience at MDA summer camp was my first encounter with anyone suffering from MD. I had been at Camp Fire summer camps both as camper and counselor for over 20 years, so I knew the value of summer camp for any kid. As an older adult, I was not eligible to be a counselor; I was part of the support staff. The counselors were young people who were vetted. They had to be older than 16 and have references supporting their dependability. Some counselors were assigned 1 to 1, some 1 to 4, depending on the severity of the campers’ disability. Spokane MDA used Camp Four Echoes on Lake Coeur d’Alene, so there was boating and swimming and crafts and sports and games—the usual camp stuff. The campers left on a Saturday, but staff did not leave until Sunday. That day was important. As cool as it is to watch severely handicapped kids having fun in the sun, laughing and playing just like any other kid, underneath, right under your skin, is the realization that next summer, some of the campers will not be there. Not because they don’t want to or can’t afford it or the family is going to Disneyland instead, but because they will be dead. Sunday is the day the staff can release the emotions they’ve all had pent up. The grief. The despair. The unnamed, elusive, indescribable feelings. We cried together. We hugged.

The fall planning meeting for the following year’s summer camp always begins with the bad news. Who has died. That was sad, but there was good news to offset it; an Idaho corporation was paying to have some kids flown up to camp from Boise. This was the first time any MD camper from that area would be able to come. We were all very excited. There were two glitches. We would not be able to vet the counselors, and there was no flight back to Boise on Sunday. The staff would still have campers around on that all important day of emotional discharge and bonding. We all agreed it was bad, but the benefit of giving those kids from Boise a camping experience out-weighed the needs of the staff.

Not being able to vet the counselors turned out to be a disaster. Many of them were not even 16. Several were so unreliable and irresponsible, they’d leave a handicapped kid alone near or even in the water. Several times we narrowly averted disaster. It’s not efficient when the people supposed to be watching over others need watching over themselves. One boy in particular was so useless, we tried to have him sent home. In addition to the regular emotional turmoil we added anger and rage at the immaturity of this one counselor. It was aggravating in the extreme to think we had to have him around on our Sunday.

When Saturday night came and we were left with the Boise kids and the lame-o counselors from there, we decided to make it a movie night and rent R-rated movies. We picked up 3 movies, popped a bunch of popcorn and started to settle in.

One of the campers from Boise enjoying their first summer camp was a boy named Brian. Brian’s wheelchair did not fit him right. He had open sores from the rubbing. We had discussed Brian’s chair problems, and were told that his parents were not able to afford a new chair, nor were they willing to jump through the red tape hoops to get MDA to pay for one. Brian had to suffer. He’d had fun at camp, despite the pain from his chair. He was thrilled to be sitting down to R movies; they all were. Why not? So what if they were 12, 13, 14, they were sentenced to life in the prison of their own bodies. They can hear the F-word, see some sex and violence.

As we were settling down to our movies, a miracle happened. The 14 year-old counselor we were all pissed at picked Brian up and took him into his lap. It took about 45 minutes of wiggling, adjusting and fidgeting to get Brian comfortable, without any pain from his sores. Then, for 6 hours, that irresponsible, useless, aggravating kid held Brian without moving or complaining. That was Brian’s last summer camp.

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