Chapter 11 - Michael
Michael has cerebral palsy and requires total care. He cannot talk or walk, has limited control over any muscles and needs to be fed and cared for. He says ‘yes’ by raising his left hand and ‘no’ by raising his right hand, sometimes he has trouble even doing this. When I first met in he was small and extremely thin. You could wrap your thumb and index finger around his biceps and his legs weren’t much bigger.
If you are around Michael much you will soon realize there is a lot more to Mike than you may first imagined. He understands everything you say. His eyes are his communication board; just by looking into them you can tell when he’s happy, sad, or mischievous. His smile is completely infectious. When he smiled at you, you couldn’t help but smile back.
Mike signed up to go to camp, and I nervously agreed to be his counselor. I had never fed or dressed him. More than that I was worried something would be wrong and I wouldn't be able to figure out what it was.
When Mike first arrived, I tried my best to act confident for his Mother. When it came to Michael she was not quick to give her trust. She must have bought my act, because she left him with me.
My first order of business was to get Mike in a good mood. I pulled out all of my best jokes and ridiculous actions. He laughed so hard he could hardly breathe. We joked and kidded our way through the evening. He made it easy by laughing at everything I did no matter how ridiculous. I felt he was working to put me as ease instead of the other way around.
The first time I tried to get Mike dressed was quite an experience. Mike's joints, especially his elbows and knees, are extremely stiff. They can be moved but only slowly and carefully. I was certain I was going to hurt him. The first step was to get his shirt off. Mike cannot sit up on his own or hold his hands up for an extended period of time. You can probably imagine the scene as I attempted to hold his body up, his arms up, and pull the shirt off over his head all at the same time. Because I was afraid to bend his elbows I tried to accomplish this without bending his arms. I managed to get the shirt halfway off, with his head still covered. I was certain Mike was thinking, "What is this clown doing? " 10 minutes later the shirt made it up over his head. I expected Mike to be upset but he had a huge smile on his face, he thought it was loads of fun to see me struggling. Once again I was working to keep Mike at ease and it was him who showed patience and a sense of humor that put me at ease.
From then on Mike found great humor in any troubles I would have. Mike especially found my inexperienced wheelchair driving amusing. Anytime I would bump into a door or have trouble getting over stones he would laugh.
The most frustrating part of dealing with Mike was the communication. It is scary to think that he might have some, otherwise, minor problem but his lack of communication prohibits him from telling you. When he was upset, it was up to me to figure out what was wrong. I always started with the most obvious, hunger and thirst. It could be an itch, or a stomachache or the need to be put in a different position in his wheel chair or bed. Luckily Mike was almost always in good spirits and enjoyed the "guessing game". I tried to be "super aware" of any changes in mood or facial expressions and to react immediately, we were having a great time and I didn't want to lose him.
Mike mother arrived early Sunday. She passed me as I was pushing Mike up the hill for the last time. My aching muscles were glad to see her, but my heart wasn't quite ready to let Mike go yet.
I will never forget my first weekend with Michael. Here he was, stuck in a body that barely worked. What did he have to give? He gave what he had: his smile and his attitude. He gave them with all he had. He took the cards life dealt him and played them for all they were worth. Michael not only tried to make the best of life, but he also made the people around him happier. Can we say the same?
Chuck Brodsky said "We are each others angels, we meet when it is time." I started this weekend thinking I was going to be helping and teaching Michael, I soon realized it was Michael helping and teaching me.