Drinking Through a Straw

Today I ordered a milkshake and found I could no longer drink it through a straw.

Just the latest in a string of new lessons I have learned in the past eight months since I found myself at a meeting hearing my speech sounding slurred and feeling my tongue heavy in my mouth.

By last September, I had the firm word – I had ALS – Lou Gehrig’s Disease – a rapidly progressing neuromuscular disease that breaks the links between mind and muscle resulting in eventual atrophy and weakness – all the while leaving mental functions and awareness intact.

But at least I don’t suck any more.

I want from time to time to record my journey here. Not because I need sympathy or pity – I am truly fortunate to be surrounded and supported by a loving network of family and friends who are remarkably present and provide me with the care and attention that has become so important as I slowly lose my independence. 

Not to mention all the free lunches.

Over the past six months as I have come to grips with my disease and shared my struggles with family and friends, many have told me that my attitude and conduct in the face of this new life path might be instructive to others facing hard challenges.

So I will try to chart here the emotional and spiritual journey I am walking.  When I was first diagnosed I was angry and was using my disease as a weapon to keep people at a distance.  It was a strategy to deny what was happening to me while at the same time enabling and encouraging other people to take responsibility for me.  I could be the victim, a role I had seen others in my life play dramatically but which was a new choice for me.

Then I found myself in a small hospital in central Turkey with pneumonia.  With my remarkable wife playing nurse and interpreter, I realized that my struggle to breathe was foreshadowing what would happen to me as my ALS reached its final stages.  And at that point I think I began to understand that anger and victimhood was not going to work for me.  I started to take responsibility for how I would respond to my disease and determined to live each day to the fullest.  I would not hide my disease (a good choice since my stride and speech are no longer concealable) but would be honest with myself and the world about my circumstances. 

So my current watchword is acceptance – certainly not surrender but acknowledging my reality. I am coming to understand what I can control and what is beyond my power, and to choose carefully to devote my energy and attention to the parts of my world I can impact.  I realize that what I can control are my own actions and reactions to people, places and things around me.  So while my disease may take no notice of my positive attitude of acceptance, if I go to the gym I feel better and see friends who smile with me and we all feel better.  If I hug my grandkids they hug me back and we share the love we have in such large amounts. If I sit with friends and talk honestly about what is happening and am willing to accept their love and support, we are all stronger for the bonds we are sustaining.  If I expect no miracles but seek out every opportunity to enjoy life and serve, then I will chalk up a long string of successful days – one at a time.

And I realize that there are much worse things in this life than being ill and nurtured by a host of loving and caring family and friends.