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Living with ALS: The Women's Voice

WHO AM I, REALLY?
Reflections by Mary McConaghy
June 2011

In the year and a half since my ALS diagnosis, I find that although the disease is diminishing what my body can do, it is also sharpening my sense of myself, sometimes in unexpected ways.  I’d like to share some of my new perspective on two aspects of myself – my love of connecting with people and my sense of humor.

I have always been a people person, enjoying my family, friends and even strangers, taking pleasure in figuring out what makes them tick and sharing the burdens and joys of life.  The ALS diagnosis, of course, helps me focus on not leaving unfinished business between us and makes me treasure even more the richness we find when we share life.  I also receive great comfort and strength from the people who travel along side of me.  The surprise, however, has been the powerful authority ALS has given me.  I am tougher and more outspoken than I would have thought possible just because I know I will not be around forever.   I have always been a consensus person, uncomfortable with taking the lead.   But now I have become unshakeable in my efforts to leave those I love in a good place and to make life better for everyone I meet.  Instead of retreating from the world, I find myself out there determined to function in the world. 

Humor is another surprising development for me in this post-diagnosis life.  I never thought of myself as having much of a sense of humor, mainly because I would always mess up the punch line of jokes, and now that I cannot speak, it would seem my chance at humor would be totally gone.  Instead I am discovering that my sense of humor is alive and well, but in a new and unexpected form.  My gift of humor turns out to be my ability to see the ridiculous in a situation; this keeps me from getting down in the dumps and also helps others get past their pity or discomfort with my ALS by laughing with me.  A few weeks ago a woman called me at work to schedule a termite inspection at our house; when she could not understand me, she became worried and kept asking if I was OK, if there was someone with me, if there was something she could do to help.  I was worried she would call 911 and have the rescue squad show up where I work, but I was also laughing so hard I could not breathe.  Thank heavens the woman managed to reach my husband and was reassured there was no need for alarm.  Once she knew why I could not speak, but that I could still laugh, she felt better about dealing with me.

So now when I am buying stamps, ordering a fruit smoothie, or sitting next to someone on a train, I have learned to introduce myself on my IPad, let people know that ALS has taken my ability to speak, but that I can still hear just fine and my sense of humor is very much intact.  Somehow it is the humor part that makes people relax and see my humanity – and lets me still be the people person I have always been.

Mary, her husband and her two sons live in Philadelphia.  She first noticed symptoms in the summer of 2008, was diagnosed at Christmas 2009, and just retired from her full-time job on June 30, 2010.  She and her family are now figuring out how to make the most of this next stage of living with ALS.