I have trouble finding the "silver lining" around this enormous, horrifically black cloud that is ALS. Ever since I heard the diagnosis I knew that nothing in our lives was ever going to be the same. We could try to deny it, we could try to smile and put on a brave face but basically we were heading into a frightening world of change.
I was living in Bella Coola, B.C.when I received that first phone call from my family in Okotoks that Mom's limp (which everyone presumed was just a sports injury stubbornly refusing to heal) had turned out to be ALS. I was teaching Math and Business in the tiny, isolated town - my first teaching job! I was enjoying the term and I was happy - my career seemed to be developing nicely and my partner and I, having endureed a hectic three years of finishing up our university education together, were finally settling into what promised to be a happy, calm and even financially secure period of our lives. It seemed we had weathered the storm and could finally start to relax and really enjoy one another.
But then the phone call came - across the Rocky and the Coast mountains - I got the news - my Mom had ALS. I was immediately horrified because I knew what Lou Gehrig's disease meant. I knew about the swift decline and death within a few years - Sue Rodriguez's case was still fresh in my mind. I don't remember the phone call very well or the words exchanged, I just remember the shock in all our voices, the disbelief - surely this could not be true. My mom was the healthiest one of all of us - a marathon runner, a flamenco dancer, a vegetarian, a health nut. Santo was, in fact, facing his own nuerological battle. He had and still has a condition called familial spastic paraperisis - a condition that causes symptoms similiar to MS (he walks with a terrible limp and stumbles often). How could our family be doubly troubled?
And so, we were terrified.
That Spring I flew home to spend a week with my family, to see how my mom was doing and to finally get the chance to see my young, talented actress of sister perform the role of Maggie in her school's big budget production of 42nd Street.
It was a difficult visit. The last time I had seen my mom she was slow and tired but still able to get around. This time the change was drastic - my mom was using a walker, and barely managing at that. She looked so devastated, so embarrassed even. The woman who had once found the glitz of parties invigorating chose to skip a big party that closed the final gala night of the musical and go home to rest instead. I think Andrea was heartbroken but she had so much to celebrate that she just carried on like everything was normal.
To be Cont'd