April 13th, 2006. 47 years old. I sat stunned, alone in my primary care doctor’s office as she repeated the dx of ALS. After a few years of tests and MRI’s to figure out why my right side was diminishing in strength, this was what it had come to. She appeared to be as stunned as I.
After a lifetime of establishing myself as a driven, determined, and fiercely independent individual, I was being forced to face a reality of slowly losing every ounce of dignity and independence until I would be totally dependent on everyone around me. Being told that no matter how much I drew upon my stubborn determined strength I had nurtured within, it would be and indeed was happening anyway.
I had been raised surrounded by a great supportive family. 4 brothers, 2 sisters, and 2 parents of German heritage proud to be able to outrun and outlive any tragedy sent our way. I was the third child, and had lived the most colorful life of any of my brothers and sisters. Our parents encouraged and exemplified a strong work ethic. I had always been taught never to let the obstacles get in my way. If you come up against something you find in the safest and fastest way over it or around it. There was always at least one way. So naturally, being told there was no way around ALS was probably the most difficult thing that I would ever encounter in my lifetime. I was being forced to reverse every life lesson ever learned.
Remember the aftermath of 9/11? Remember how stunned we all were, and how angry that this could happen to our nation, and how numb we were? Then slowly the feeling of camaraderie overcame every one of us. No matter how angry we were, we could not help but to be inspired by what it brought out of each and every one of us. Strangers comforted strangers-the poor reached out to the rich. The famous stood shoulder to shoulder with street people. Slowly across our nation we were unified by tragedy. We were fueled by knowing that there would be light at the end of that tunnel, that we would one day began to heal. Then slowly it began. Little by little we returned to our lives, and a part of us relinquished that anger and pain. Sometimes it seems that we may have almost forgotten.
My observation since my own diagnosis of ALS is that “PALS” (patients of ALS) are stuck in our own “9/11”. We were put there when we were given the dx of ALS. We reach out to each other to keep one another afloat. We comfort a wife when her husband's life is snatched by the hostile disease ALS. We remind each other daily that we are not alone, that there are many of us who know this pain. We are in fact all we do have to reach out to. We do not see the light at the end of the tunnel-for there is none. As in no cure, no treatment, no remission. Imagine being stuck there. We have been unable to get the attention needed from our government, from our media and from our peers. Instead we find strength from those left behind, and we learn from their struggles. Like vultures we are forced to survive on the remnants of their loss. While I would not for a moment trade the golden friendships I have forged with these people, the most courageous people I’ve ever met in my life, I would still like to see the day when no one has to suffer from the merciless claws of ALS. Please do your part to help us gather some attention for this orphan disease.