Sometimes, when I’m having a tough time with my body, I feel really afraid. When I have trouble walking. When turning on a simple lamp switch hurts my fingers. When buttoning or unbuttoning my pants takes concentration.
To be sure, I have a little pain doing these things most of the time. But, when I’m really having a tough time walking, balancing, and my legs are hurting and tingling like there is no tomorrow, I feel afraid, sad, and disappointed.
In fact, I feel a little teary just writing these words. Now, I know historically
I preach mindfulness. In this case, the mindfulness is not entirely just what I am feeling right now. To be productive, the mindfulness involves directing my mind to what is working right. I am breathing in and out. I am typing and it is not really hurting at the moment. My toes are still wiggling, even if, it is out of pain.
When I am in a lot of pain, my counselor suggested I focus on a part of my body that is not in pain. She first said, “Focus on the tip of your nose.”
“No, I don’t want to be thinking about the tip of my nose.”
“Okay then, focus on your hair. Is your hair hurting?”
I tug at my hair. “God damn, my hair doesn’t hurt! Who knew? My hair doesn’t hurt!”
Sometimes, this kind of thing is helpful. It mostly just helps for a couple minutes. But, if I can remember to go back to it from time to time, those minutes can add up.
I also remember that line in “A League of Their Own” when the baseball star says, “I’m quitting. It’s just too hard.” Tom Hanks replies, “It’s supposed to be hard. If it wasn’t hard, everyone would do it.”
I have to confess that I’m not sure how that applies in my case. I do think of it as I’m working on my own special hard and not everyone would be up for it. I remember when I would wake up and couldn’t walk years ago. I would have a period where I couldn’t move my legs at all. At that time, I didn’t have a wheelchair. We would have to go rent one. It was $30 a month which was a lot of money.
So, I would wake up needing one unexpectedly. I would sit on my butt and sort of scootch backwards by using my arms to pick up my torso and move myself across the floor. One day a friend was visiting, and I was doing this to get to somewhere in the house. My friend said, “Wow. I wouldn’t do that. I would just stay in bed.”
I thought, “How in the hell would that help me? Where would I get just staying in bed and waiting?”
During that period, I finally asked my doctor if I could just have a prescription for a wheelchair for a year so I wouldn’t have to go keep renting one. My doctor put in an order. I was at home when the wheelchair was delivered. The guy showed me how to work it, and it was fitted to me. To my absolute HORROR, he told me it was mine to keep and not a rental. I had pondered how to decide when to get my own wheelchair. Something I never wanted to have to decide. Yet, someone had made the decision for me. It was cheaper for my medical insurance to just buy one rather than rent one for a year. Convenient but a terrible thing to have to need in my mind at the time.
I’ve had to put a lot of work into seeing the wheelchair as just a tool. That it’s not something about ME. It is just a tool that I need to use from time to time. To hell with anyone who doesn’t get that.
Back to where I am today. I try to avoid using the wheelchair whenever possible. It’s not because it’s inconvenient which it is. It is rather that my arms, hands, and shoulders don’t have the strength to just keep pushing unlike when I was younger. Crap. What an outcome. So, I walk as much and as hard as it is. Sitting in a wheelchair can also get damn uncomfortable which is like being trapped in the middle seat on an airplane.
Last night, I was watching a show about service dogs being matched to all kinds of people and kids with disabilities. Suddenly, I felt as one of them. Fortunately, I already have a fine companion dog. But, Sheba can’t go in public with me because she gets freaked out. She is an extremely loving, fairly well trained dog. But, as a rescue dog, she has her own special needs.
I’m going to a Mets vs. Mariners baseball game in a couple weeks. I will have to use the wheelchair but someone will push me. I am terrified of needing a wheelchair and not being able to push myself. I know what that could lead to. Please god, could I never have to use an electric wheelchair? I just don’t want one.
As a kid, for some reason that completely baffles me, I thought using a wheelchair would be cool. Obviously, I never hung out without someone who actually used a wheelchair. It would have cleared up my fantasy real fast.
There have been moments when I had to go up a hill and was alone. I would push a few feet, take a break, and push a few feet more. One time, a guy came up to me. He said, “Can I give you a push?”
These are the moments when I have to swallow my pride and be honest with myself and him. “Yes, that would be great. Thank you.”
He said, “I’ve watched you go up this hill before and marveled at your ability to just keep plugging away. I thought you might like help.”
Boy, was he right. “Thank you so much. I appreciate it.”
Another time, I was in Seattle for work. I parked my 1969 Mustang up a bit of a hill. I knew going to the worksite would be easy down hill. But, coming back, not so much. On my way back, there was a guy sitting on a little wall. He looked strong and homeless. I proposed, “Hi. Will you push me up the hill to my car for a dollar?” He said sure and pushed me up to my car.
He pushed me up to the Mustang and said, “Is this your car,” with a little bit of awe. I thought he was thinking folks in wheelchairs might not have cool cars. I felt bad about it in that moment because he needed money.
I handed over the dollar and responded, “Yah.”
“Cool car,” he said. It caused me to have a new thought about street folks. I had money and could spend it anyway I want. I realized I had no right to tell him how to spend his money just because he didn’t have any. I changed my belief system at that moment about homeless people’s right to spend their money how they want. But, I’ve gotten off track here.
We remodeled our house with disability in mind. We installed big flat light switch plates, pulls with handles, and a walk-in tub which I use daily for a hand held shower. It was in preparation for a lifestyle that I hope will never come.
I work at a job that is accessible. I can also telework fairly easily and still meet my customers’ needs. But, I want to keep walking. I want to walk the dog. At times like this, I see people walking and moving comfortably on the sidewalks, and I hate them. No offense, but that line, you don’t know what you have until you loose it is so damn true.
Today, I’m working on being nice to myself and trying not to get ahead of myself. I just need to do the next thing. I don’t have to figure out tomorrow or what next week will be like. I just need to notice where I am right now and figure out the next thing.
I’m thinking about starting a website called IntermittentBodyCrap.com. But, at least in this moment, I can truly say that my hair doesn’t hurt.
L’Chaim.
Joceile
7.15.17
Picture: My Granny, Lucille, and I. Circa 1992
Picture: My Granny, Lucille, and I. Circa 1992
For more stories, go to: joceile7.blogspot.com
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