When I hear the phrase “out of control “, I think of a car swerving across a freeway or a machine running, no longer obeying it’s operator. I also think about people whose impulses they can’t, or don’t want to, control. The phrase evokes the image of something that can’t be tamed and can’t be stopped except to some disastrous effect.
My disability is definitely out of control based on the definition that the operator is no longer in control of his machine. As a result, I have lost control of so many aspects of daily living which I have relinquished to my caregivers. My legs are now my power chair and my arms are my caregivers. I still have some functionality in my fingers which is how I am writing this. Thank goodness I found a trackball mouse that works with my phone.
It’s hard sharing this because I don’t like dwelling in dark places of my journey. I do feel there is a reason that will emerge out of this, if nothing else but be in gratitude of what our bodies do for us. My experience these days include staring at a cocktail six inches from my mouth and not being able to drink it without the help of my caregiver. Or not being able to grab a piece of sushi and shovel it in my mouth. Most frustrating is when I am left alone without access to my phone or computer or TV and sitting for what seems like hours, waiting frustratingly until someone comes and gets me. Being fed by others is a little indignity for me too. I am dependent upon how fast or slow they feed me and the combinations of foods that they choose to put on the fork . Nothing stops me from making my needs known though, but it’s a balance between sounding whiny and respecting my caregivers. Finding quality and consistent caregivers is no small feat, so not pissing them off is a priority for me. I have many more examples of what I can no longer do and the hellish frustration that it brings, but I’ll spare the details. I hope you’ve gotten a sense of what being out of control not just looks like but also feels like.
So how do I turn dark to light ? My story here is about balancing dependence and patience. It’s easy for me to ask for all of the focus of others attention so I can get everything I need the moment I want it. That’s the way it used to be when I was in control of my body. Why do I need to give all I had before up? The answer is because if I am going to be taken care of at all by others , then I need to consider their needs and tolerances. The lesson here is how patience can be a virtue if only to reduce stress. Immediate gratification is something I pursued when I was in control but now it’s no longer an option. Stress is unhealthy for everyone and is especially so for me. I’ve learned to create space between my needs and they being satisfied. I find taking a breath and also a short meditation fills that space.
Another frustration is my inability to create my ideas in wood. I loved to build and I loved my tools. My creativity came out in my designs and the final product. On one side of my spectrum was big outdoor projects like raised beds and the other was building electric bass guitars. I’m the antithesis of the joke, “What do you call a Jewish man with a toolbox? A dentist.” If you’ve seen my garage in the Orinda house, you’d know my love for tools. A fond memory is when I sat at my work table with music playing in the background, a small cigar in my hand, rain gently falling, garage door open, and with tools in hand, trying to solve unanticipated problems that building instruments provides. Even then I knew those days were not going to last forever, I cherished them. I now have those instruments hanging on my walls and reflect on the joy of making them, playing them and leaving some artifacts of my passion.
My point here is to encourage anyone reading this to consider trying something new using your head, but especially your hands. I believe anyone can benefit and engage in the journey of creating.
I now have to go back to the dark side again to share something even deeper than what I just shared. Even more frustrating, and frankly very sad and angry what this disease robbed from me is the ability to initiate human touch. Translated means I can no longer walk hand in hand with my wife or hug any of my kids or good friends when I see them (and will spare the subject of intimacy which is the hardest. ) Imagine not being able to hug your kids when they come home to visit or spontaneously grab your significant others hand when you’re both enjoying a concert or movie. I won’t go further into detail since its heavy on both reader and writer alike. I will break into the light and say if you can use your arms then challenge yourself to double the number of times you hug or grab the hand of a loved one or friend. Don’t get me wrong, I get lots of human touch these days, more than ever actually because my friends and family initiate it more than ever. And that’s where the light comes shining through for me. Let me know if its the same for you.
More to come…