We just experienced the longest day of the year – summer solstice. Ironic since my days are growing shorter. This week also marked one year since I first became aware of my ALS symptoms. And it was also Lou Gehrig’s 110th birthday.
I have tried hard to find some meaning in these overlapping occurrences, but have come up empty.
The once constant is change – where have I heard that before. My whole life these days is about accepting and adjusting to changes I cannot control.
Now that’s a new theme!
Because the muscles in my mouth and face are growing weaker, and I cannot close my lips tight, sneezing has become a grand adventure – especially if I have recently eaten. No more tissues for me – I now require whole sheets of paper towel to catch the flying elements.
Most solid food has left my diet, replaced by thick soups, chilis, and smoothies. I am starting to eat pudding again. I now take a good portion of my nutrition through my feeding tube. I buy whole cases of instant breakfast and thickening jells.
I find myself saying goodbye to so many things these days. To eating solid food. To bike riding. To wine and spirits that aggravate my throat. To some toxic people who were simply making demands on me that went far beyond my capacity to absorb.
I spend part of every day sucking small pieces of paper through a straw and depositing them into a cup. I went to graduate school for that?
So a new theme is simplicity. My diminishing physical strength and coordination means I must really concentrate on what I am doing at any particular moment. Now that keeps me anchored in the present, with only brief excursions to how it used to be or how it will be. I could choke or stumble while letting my attention drift from the next step.
All in all, it’s not such a bad way to live.
My family gave me a father’s day gift – a tandem parachute jump when we are at the beach in August. Now that’s an activity that will really get me focused on the absolute present. I have never felt tempted by these extreme physical challenges, but I just might do this one. My friend Tom often reminds me that we PALS have a different risk-reward calculus – and not just about drug trials.
I have a good friend dealing with cancer and another dealing with the impacts of cardiovascular disease and strokes. Their lives are filled with treatments, each of which offers new “hope” for a “cure”. My challenge is that there are no treatments and no cure – there is only coping with my disease and learning new skills. So I approach every day as an adventure, treasure my family and friends, and concentrate on the challenge of living well.
And that is “Change we can live with.”