The Ice Bucket Challenge has been a dream come true for those of us with ALS. The amount of publicity and awareness generated by this social media phenomenon could not have been purchased at any price. The donations have been huge. Suddenly, ALS is pulled out of the shadows and into the sunlight. A whole new generation, who never heard of Lou Gehrig, now understand what ALS is. I am hopeful that with this increase in funding, a cure will be found and my life may take another turn. Here is my story …
As nurses, we begin our careers with the full understanding that we will deal with new life, broken bodies and death. The focus is on the patient. For me, that meant 37 years in mental health nursing — the last 10 of those teaching future nurses.
That all came to a screeching halt when, in 2012, I was diagnosed with amyotrophic lateral sclerosis, aka Lou Gehrig’s disease. I had experienced some leg weakness for several months before the diagnosis was made; the diagnosis can only be done by exclusion. I knew it had to be something neurological, but I never dreamed it could be a disease that strikes only two out of 100,000 individuals. A disease for which, even 75 years after Lou Gehrig’s famous speech, there is no known cause, no known cure, no effective treatment and an average life expectancy of two to five years.
I don’t claim to be the only nurse to become seriously ill. Unfortunately, there are many of us. I believe there is a bond among those of us who have peered over the edge into the abyss of our own mortality. The question becomes, How much of our time will be functional and how much will be under custodial care?
I have reached the two-year mark. I find myself looking longingly at people who have been fortunate enough to reach their elder years. I listen empathetically to friends describe their ailments. I don’t begrudge them discussing them, but secretly I wish I had a disease for which there was some treatment, a cure.
Transitioning from the role of caregiver to patient has been particularly difficult. As a nurse, a teacher and a mother of four, I have been accustomed to making plans, giving orders and taking action. I can no longer work or do household chores. I can’t walk without assistance. I use a walker in my house and a scooter for longer distances. I am on the cusp of losing my ability to stand up independently. This is especially distressing in that once an activity is lost, it cannot be regained.
So what do I do? It is impossible for me to surrender and do nothing, even though currently there is no active treatment to pursue. I guess it is the nurse in me. I have elected to act through advocacy. I talk with interested people, especially others with ALS, in real time on the Web. I promote research, clinical trials and the National ALS registry. I have attended the National ALS Advocacy Day in Washington, D.C., for the past two years. We successfully lobbied our officials to support legislation and funding for ALS research, and I will continue that for as long as I am able. I am in the midst of planning a golf fundraiser with all funds going to ALS Therapy Development Institute for research.
For myself, I work hard to enjoy the present. Mourning my losses is simply not productive. I have learned I have more friends than I ever knew, and I have come to appreciate the basic goodness in strangers. My family is steadfast with me, and I have never in my life felt more loved.
I have learned to focus on what I can do, rather than what I cannot, such as writing this article. I have taken up bridge, a game that uses my mind instead of my body. In the past I was an avid golf and tennis player. Tennis is out of the picture, but I have acquired an adaptive golf cart that allows me to play sitting down. What a treat to be outside on the course again! I hope to play in an upcoming ALS tournament, as well as being the featured speaker. I will play golf until my arms become weakened, too. I am blessed to be a slow progressor. I also have begun voice banking, a process by which I record my voice now so that when I need a computer to talk for me, it will sound like my own voice.
Two out of 100,000 people get ALS. I beat the odds to get this disease. Now I plan to beat the odds of living past the two-to-five-year average. I’m shooting for 10. Maybe by then, if we raise enough awareness, pass enough legislation and raise enough money for research, there will be a cure in time for me.
Editors note: Kennedy suggests that donations for research go to the ALS Therapy Development Institute, which uses 87% of its funds for research, or the Northeast ALS Consortium.