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…
Welcome to my world 
Harry this is so raw, powerful and compelling. It brings us into your world. It is sobering. It is painful As always, your writing this reflects who you are – truly an exceptional human being. You continue to teach us – to never take anything for granted, to appreciate the simple things, to make each day count. Know that I love you
Shabbat Shalom
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I’ve wondered how you were dealing with your “lack of control.” Thank you for sharing your world, it’s pain and insights. Looking forward to giving you a hug the next time i see you. For now xoxo.
Hag semeach, Shabbat Shalom.
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Hoy tu escrito me ha hecho pensar mucho en mi vida y he tomado una lección importante del. En verdad no soy capaz de hacer las maravillas, que por ejemplo tú, haces con tus manos, pero lo que si puedo hacer es trabajar en la tierra, sembrar árboles y todo lo demás. Me siento inspirado por ti y me repito una y mil veces, estoy muy agradecido a la vida por haberme permitido conocer a una persona tan excepcional como tú.
Te quiero mucho hermano, desde lo más profundo de mi corazón.
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My dear friend you are amazing. Your thoughts pen to paper has surely touched friends family and me
deeper than you can imagine. Your words are mirrored with an inner strength that inspires us all. We look forward to our Lymelight Reunion next week and look forward to sharing hugs, laughs and whatever comes our way! Love you! Donna
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This made me reflect on our time together, Harry, on what a wonderful friend you have been, and of the way you always try to make lemonaid from life’s lemons. As lemons go, this is a big one, but you keep squeezing. To help me be more responsive when we’re together, I authorize you to use the universal Chris Command — Hey, Asshole — to get my attention. You are authorized because I love you and know you would never abuse the privilege. I know that if you say “Hey, Asshole,” it will be for something important, in contrast to many of my other friends and especially my children, who I frankly think use the command excessively and even frivolously. I’m also hoping that by making it clear that you’re an authorized user, the other Men’s Weekend guys might cut back a little, out of respect for you. Feel free, brother. Truth in advertising: I’m pretty sure this command won’t make me a better driver of the chair in attendant mode. In those situations I think you’ll have to stick to “Watch out, asshole,” or, when I hit people instead of cars, “Sorry, my friend’s an asshole.” Be creative. I’ll be listening. Much love.
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Harry,
It takes a lot of courage to let us in to the difficult parts of your life. It is so helpful for me that you shared this and gave voice to your experiences. Please know that Sandy and I have infinite patience for whatever you need and that you can always ask.
We love you!
Paula
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Harry you are such an inspiration. You can find the light in the darkest corners without denying the darkness.
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Thank you Harry for sharing this. I feel so lucky for the time I get to spend with you and Maryann and the rest of the family, kids and dogs. Your house is always like Grand Central Station, with people coming and going, with music on or TV on or good conversations, and always good booze. ALS is such a mean disease and I couldn’t imagine anyone handling it with more grace and honesty. That you can always find humor almost no matter what is going on is such a gift to all those around you, but we’d love you even if you didn’t. In case you can’t tell there are so many of us so grateful to be in your orbit! PS Free hugs upon request
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Once again, Harry, you help us look at matters in a way that can’t help but raise our consciousness toward human contact, both verbal and physical. I loved seeing you at Lee’s book launch, but regretted that I had to share you with so many others who love you. You bring light to all of us. I am blessed to know you and to be able to hear your beautiful words.
Norm
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Harry, I have been reading all of your blogs and I often find myself speechless (imagine that!) and humbled but especially grateful to you for many things. First of all, I am so grateful that I met you and shared so many hours on the road with you. We had lots of fun and went through a lot of growing up and crazy adventures. (I remember the first time you took me to Costco, I was in awe!!). I am especially grateful for all the help you gave me hiring me for jobs at companies where you worked and projects that helped me so much when I was a single mom and I was struggling to pay my bills and support myself and my daughter. You were always there for me and were always trying to find work for me! I will never forget how you never gave up on me (even at that Schwab job where I was completely over my head!!). You and Mary Ann and your family have always opened your hearts and your home too so many of us.
As a controlling person myself, I can’t imagine what it must be like to have to wait for people to take care of you and to wait to be tended to or to initiate touch. You have given me much to think about and much to be grateful for. Thank you so much for your truth and honesty. I treasure our friendship.
Mary
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Harry, your optimism has always been unbelievably inspiring, and your vulnerability is just as powerful. Thank you for sharing your truth. It makes us all feel closer to you when we get to learn about the intimate experiences you are going through. We all love you so much.
Love,
Jennie
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