I have had the remarkable experience this week of long conversations with many friends. It is heartening to know that despite my weakened voice, I can still be understood when I speak slowly and focus on speaking clearly. It is particularly heartening to know that my friends and family are able to get passed my ALS and deal with me as a grownup friend, not a patient to be pitied. There will be plenty of time for that soon enough.
My ALS is the elephant in the room, but it seems that calling it by its name allows us to get beyond the disease to relate with love and dignity.
I am so grateful to have so many people around me who are not scared off by my diminished capabilities.
One of those friends asked how I was doing with “living in the present?” I told her that it was not easy but that I was able to be here most of the time. As I thought about her question later, I started to identify some of the challenges to being in the present.
First, of course, is fear – of the known and unknown future. It’s not hard to slip into preoccupation with where my disease is taking me – a world in which I do not speak, “eat” only through my feeding tube, breathe with a machine, and ambulate on a big power chair. I can usually spot the fear coming on and I have some effective tools to minimize its impact – most importantly, just recognizing it and calling it by its name “fear”.
At the beginning of this journey I could easily be trapped in my past, wondering what I did wrong to deserve this cursed disease. But as I learned more about what was happening to me I realized that there is nothing I (or my Doctors) can point to as a cause. There is no known behavior or circumstance in my past that has lead to ALS. Accepting that, I am no longer obsessed with reexamining every day of my life to find an explanation. Being able to give up the need to dive deeply into my past has also mostly freed me from the urge to rewrite parts of my past. Being able to give up that perverse challenge has freed me a good deal to be living in the present.
Planning for the future is another big challenge to living in the present. While some planning is helpful and important, I have realized that it does me no real good paying too much attention to the fact that at some point I will need to select a fancy power chair and a mini van to get around, or equipment to just get in and out of bed and chairs and the bath. There will be time enough for those decisions as I get closer, and I have excellent resources to get those things done when it is time. So I can label the obsessive planning distraction and get back to the present.
There is of course still planning to be accomplished, days to organize, work and service obligations to fulfill, and vacations to arrange. I still must make shopping lists for goodies to keep my VitaMix happy. But I have learned that I can approach these planning tasks from a present perspective by being attentive to what is really important for me to do now and what can wait.
So in the end it’s about choices. I remember an old adage I learned years ago but had forgotten until recently – “pain is inevitable; suffering is optional.”
On my desk is a little wooden box Roz gave me recently. On the lid are these words – “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Whenever I sense that I am about to let fear, planning or other obsessions get in the way of dancing, I open the box and deposit the dysfunctional thoughts – and I am free.