Sometimes the flood of emotions becomes almost unbearable. Sitting here thinking about how ALS is robbing me of my voice, my breath, my stride and my dignity, it is tempting to retreat inside and isolate myself from family and friends who love me. Why burden them with what I am becoming? Why make a difficult future for me even worse for them?
I found myself at a very noisy social event recently. A combination of my weakened voice and the overall din made talking with others impossible. So I pulled back from the event and became a passive observer rather than a participant in the evening’s events. I became more and more detached, eventually a little bored, and as I dwelled on my growing loneliness in the midst of this party, was overcome with feelings of being trapped and scared. Fearing not the unknown but the well-known door to despair that was opening before me.
Been there, done that!!!
My education and training as a social scientist prepared me well for a life of observation, analysis and objectivity. I was quite comfortable lurking around the edges, my sharp eye and sharper tongue always on alert for an opportunity to demonstrate my intellectual superiority. It was deeply ingrained, second nature, nicely rewarding and very safe.
Especially very safe – but an expressway to unexceptional mediocrity.
Then I found myself by an accident of fate on an Outward Bound adventure in the mountain wilds of western Carolina. It was a cold and rainy evening on the fifth day of our 10-day trip. The twelve of us were hiking down a steep hill to our overnight campsite – or more accurately, the other eleven were working hard. I was hanging back, talking careful mental notes about each of my colleagues and their emerging relationships. But I was not present. I was not really carrying my weight on that rainy trek.
I still do not know what prompted my recognition of the unfortunate detached and demeaning game I was playing out. But bright as the missing moon that evening, I recognized what I was doing to myself and began what has now been a 27-year journey to become connected and a fully mature man. That has meant working hard with friends (paid and others) and family to overcome the fear that had held me back from real relationships in which I could risk and grow.
I was getting real good at being a whole man. People admired me for qualities of compassion and understanding that had eluded my old analytic self. Oh, I was still a wiz with a spreadsheet or a PowerPoint deck, but that no longer defined who I was. I found a whole new repertoire of capabilities that centered on being accepting, positive, gentle and loving.
Then came the ALS to break up the party. At first my anger was a serious setback to my evolution, but gradually over the months since my first symptoms and diagnosis my anger and isolation have diminished and equilibrium has returned. I have refocused on acceptance and love and living fully one day at a time. Even recent episodes of doubt and withdrawal have been thankfully brief.
As I write these words I am listening to the soundtrack of Stephen Sondheim’s Company, especially the monumental song “Being Alive” that describes so vividly the risks we must take to achieve real humanity. These lyrics just jump right out:
“Someone to crowd you with love.
Someone to force you to care.
Someone to make you come through,
Who’ll always be there,
As frightened as you,
Of being alive…”
I am so grateful to all the very special people who fill my life with love and who force me to be alive. I hope in return you can feel my love and that our connection helps you feel alive as well.