I’ll start off with a quick apology for being so dark in my last post but I felt it was important to share what it means to be the physical me. In this post, I want to share many of the things that make my life lighter and joyful. It is not so much a message of “stop and smell the roses”, but more about investing in happiness. So let’s lighten up a bit.
I know I can be stubborn about my care and my changing abilities. For some time now, I’ve been writing this blog on my phone using a trackball mouse. Then recently my thumb started stiffening. The trackball solution is fading. Mary Ann has tried to help me position the trackball in my hand for some time, during which we both became frustrated, me with my lagging range of motion in my fingers, making it difficult to use the trackball, and she in constantly changing my hand position to help me out. For some time, she found another way to keep me writing which was eye gaze technology. . It is eye gaze equipment and software that allows me to use my eyes to navigate my computer and to be able to write, which is how I’m writing this right now. With her persistence, she has definitely lightened my load and for that I’m very grateful.
I had an expression I used long ago, “Life is so much easier without a backpack”. It means that we should be taking stuff out of our backpacks instead of adding stuff to our backpacks. When I finally listened to Mary Ann and adopted the eye gaze solution, it felt like I took a bunch of rocks out of my backpack. I’m now working on how to drive my wheelchair independently. If I can figure that one out, it will feel like another load of rocks can be taken out of my backpack. If there is a message here its to encourage you to take rocks out of your backpacks by not overloading your lives by doing more things to handle more than is practical, or to find ways of making life easier. Maybe it’s ordering in dinner instead of cooking, or taking a Lyft instead of driving into the city. We all deserve to take breaks instead of trying to do more and more. Sometimes its best to spend a few dollars to extend the pleasures of life.
Another way I’ve been lightening up is by being with friends and community. A few weeks ago, a friend and I hosted a reunion of friends, all who met in 1973. Forty-six years later, we are still in touch. It gave us a great excuse to reunite and have fun. The weekend was spectacular. Many of those invited could not make it, but regardless, for those who were there, it was important to all of us to know we still have each other, regardless of time and distance. For all of us, taking the time to make it a priority and show up was a realization that life can be capricious and connecting with old friends felt like we were living in the moment. Woody Allen was quoted as saying “95% of life is just showing up.” I think the message is clear, showing up is so important, not just for ourselves, but especially for others. I can’t express enough how much I appreciate when others show up for me. With life being tenuous, not just for me, but also for my friends who are aging, we all agreed that showing up for each other is so important – if not now, then when?
Another example was this past weekend. Mary Ann needed a break. I had arranged for my friend Barry to stay with me overnight while Mary Ann was away. Instead of just him, he came with the three additional friends who are long time attendees of the Men’s Weekend. After letting the guys who are local of the Men’s Weekend know Barry and the Valley Boys were coming for the weekend, three of the four Bay Area guys were able to join and we had an impromptu Mini Men’s Weekend. It’s hard to express in words how happy and grateful I was that we were all together for the entire weekend. It was not just about the conversations or the eating and drinking together or watching movies. For me it was the fact that they all showed up for me.
Another way of lightening up for me is trying not to take life too seriously. It’s not about denying my situation but knowing it could be worse. Last night, Mary Ann and another couple were invited to a high ticket gala for the ALS Association. There were a few of us there in our wheelchairs, I felt grateful that, compared to others, I still have my voice and the ability to communicate and eat. After a few drinks, I felt I could lighten up a bit. I even dressed up in a suit complete with bow tie and my Kangol hat. While I was there, many people from the medical community who have supported came up to me a bit surprised by my being there. I responded by saying it’s really hard for me to miss a party. I don’t like feeling that I have missed out. I even started thinking how I’m going to miss hanging out with my friends at my own funeral when the time comes. Just another missed party. It reminds me of the joke (forgive me if I already told it) where a grandson went to visit his ailing and bedridden grandfather. At the bedside, he asked his grandfather what he could get him anything. The grandfather asked for his very favorite food, his wife’s kugel. The grandson went into the kitchen to get him a piece. After five minutes, the grandson comes back empty handed. Disappointed, the grandfather asked what happened. The grandson responded by saying grandmother wasn’t giving any up because she was saving it all for the funeral.
So are you feeling any lighter? What are some rocks can you commit to taking out of your backpack? One idea might be setting up some time to just talk out something that’s on your mind. Years ago, I used to carpool with three other people who I have become friends with over the years. Every weekday morning, we would take turns driving the long trip down to Silicon Valley, all of us with our own rocks to bear. We would share our joys and adversities with each other under an umbrella of trust we called ” carpool confidential”. What was shared in the car, stayed in the car. It felt good talking things out to get the day started on a lighter footing.
And finally, we need to lighten up about ourselves. Never had I thought I would look like the guy in the picture below. At first, I was self consciousness about how I looked in a wheelchair with a tube hanging off my nose. But, then if Snuffleaupagus and I have something in common, and he is lovable, well then sharing the same snout can’t be all bad. Be kind to yourself, especially in the way you look. We are all a portrait of the Divine’s making, so spend your time on making the most of each day, even if you look like Mr. Snuffleaupagus.
More to come…