Sunday, July 21, 2013
When I first found out that I had Parkinson’s I kind of squirreled myself away for awhile. Aside from the people I saw at work every day, and the people that I knew on the commuter trains, I really didn’t reach out to anyone. I hid myself. Almost three years ago it was time for my 30th high school reunion and I really debated in my head whether I was going to go or not. Part of it was that I thought I might not be able to handle it but most of it was that I was afraid I might embarrass myself. A girl who I have always been close to and loved said, “I think you need to go. We’ll go together. These are your friends. They won’t care if you start to shake or drop a glass.”
We did go to the reunion and I’m really glad I did. There were people there who played very special roles in my life that I hadn’t talked to in many, many years. I talked there to other people too that I didn’t know as well. A friend, Al, said, “It’s great seeing everyone. Who else but these people shared the experience of growing up like we did?” I liked that a lot.
After the reunion I started thinking how many people there were that I cared about that I had lost touch with and how it shouldn’t be like that. I think a lot of people felt way because connections started being made again and they’re good ones. I have had a lot of lunches and coffees. These were people I lost touch with. I think that is the value of reunions. It allows you to remember good times and regain touch with people who are valuable to you.
One the first things that happened that led my wife and me to suspect something not right with me was that I started feeling like my hands and feet were always going to sleep. My family doctor thought it might be a vitamin deficiency and so he got me on a regime but it didn’t really help. I still felt this tingling sensation every now and then that wouldn’t go away.
After I was diagnosed with Parkinson’s things started to change. The tingling became numbness. At an appointment with my neurologist I told her about it. She kind of sighed and said, “I need to do something.” She went to a cabinet and pulled out a set of very sharp plastic needles. She said “Roll up your shirt sleeves.” She started poking my hands and my arms with one of the needles. “Tell me when this hurts.” She got just below my elbow when I said, “Ow!” She then had me take off my shoes and roll up my pants. She started poking again. She got up to just over my knee before I cried “Ow!”
She stood up and said “Could you feel anything when I was doing that?” I said, “I could feel some pressure but not pain.” She walked over and got a jar. She handed it to me. “Can you feel that you are holding this?” I said, “Well I can enough to know it’s there; to know that I am holding it.” She nodded her head and started entering some notes in her computer. When she was done, she swirled around in her chair and said, “T.S., you have neuropathy which is fairly common in Parkinson’s patients. It’s when a certain portion of the nervous system shuts down and you lose some part of your sense of touch.”
You don’t realize how much your sense of touch is an important thing to have. A guy once said to me,”It must be nice to walk around and not have to have pain in certain parts of your of your body, especially the ones you injure the most.” I know that everyone would like a life without pain, but pain plays a pretty important role in our lives. It's what tells us we are being injured.
A few days ago it was really hot and I was working down in the basement around our furnace, trying to clear a drain line. I came upstairs to the garage studio to try to surf the web for some information I needed. I started feeling dizzy and so I sat down on a couch we have out there. My next door neighbor, Russ, came over to give me some squash because he and wife were going off on vacation and they thought it might rot before they got back. I said, “Thank you. I’m sorry I can’t get up. I think the heat is getting to me.” He put the squash down. He said “No, Tom, I think what it is is the copious amount of blood that is coming out of your leg.” I looked down. There was blood all over the cushions of the couch and on the floor. I had slashed myself in a bad pretty bad place on my leg and never felt it; never knew it until Russ pointed it out. Physical pain is something I know we all try to avoid but there is a reason why it’s there.
Over time I have adjusted to the way I physically feel things now. Because I can’t always judge the extent that I should grip things I’m probably not the guy to ask to put a big vase of water on the center of the tablecloth at dinner party, or the guy you want using power tools in your house. I drop a lot of things and it’s probably best not to stand next to me when I’m trying to use knives. Despite that I can do all of the things I love even though it takes me a lot longer than it used to. I can still work out in the yard and the garden; I can still cook (if I am very, very careful); I can still drive, and walk around. I’m not so good with a pen but I can randomly pound on the keys of a laptop and keep doing this. Mostly the reason I am random is that I never really learned how to type.
I have some friends named Craig and Vickie. They are young couple who have that “Aw shucks” cuteness about them. Both Craig and Vickie are incredibly nice people, but there is something about Vickie that just makes me smile. Whenever I see her she does something that makes me laugh or just feel good about myself. One day I ran into Vickie, I hadn’t seen her in a very long time. She asked why I had another big bandage on. I told Vickie about how I couldn’t feel certain things. She asked questions, listened, and nodded her head a lot. Suddenly she said, “Hug me.” I still hug people and shake hands but it feels very different than it used to and sometimes it is pretty strange. Because I really like Vickie I gave her a big hug. She asked me “Can you feel this?” I said, “Yes, parts of it.” She then asked “Where can you feel it?” I told her that mostly it was in my upper body. She said “That is not the answer I was looking for. Can you feel it in your heart?” I told her that I could. “Then the rest is just something to handle and doesn’t really matter, does it?”
It is a hot and lazy Sunday, and because I have another big bandage on my leg, I am thinking a lot about touch lately. I am thinking about those people who I knew when I was a kid and all the close friends I have collected on the road of my life. I am thinking about my family who is so dear to me. I’m thinking about what Vickie said. I believe that if you operate from your heart it doesn’t matter if you can’t physically touch people, although that’s really nice. What I think is most important is that you stay connected to the people who you care about and who care about you. You can’t get wrapped in things and lose touch. You have to do your best not to lose touch because you never know when a phone call, a message, or a hug may be the very thing that positively touches yours or someone else’s life and yours too..