My Story, summer 2013

I have been a nurse for 37 years; the last 10 of those spent teaching nursing at Russell Sage College. I have been a golfer, a tennis player, a gardener and a community volunteer. I am a wife and a mother of four. I have given much to my family and to our community, and now I am in the position of needing assistance instead of giving it. It is a difficult transition. The photo below was taken just two months before the onset of my symptoms.

On May 1, 2012, my 36th wedding anniversary, I was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. I was 59. The earth fell away beneath my feet, and I scrambled to find solid ground. ALS has no known cause, no cure and not even an effective treatment. Now, one year later, I can walk only a few steps without assistance. I have orthotic braces on both legs to keep me from tripping on my own toes. I need a walker to get around my house. I cannot use a bathroom that does not have accommodations, and I cannot stand long enough to brush my teeth. It is nearly impossible to visit my garden. I view golf courses and tennis courts only as a spectator. If I need to travel more than a few yards, I require a scooter or a wheelchair.

eveningdance

Suddenly, in the prime of my life, I have lost my independence. I’m unable to continue my career as a nurse. I cannot do housework nor run errands. I make recordings of my voice in anticipation of when I will eventually lose my ability to speak. I cannot visit my children because I cannot manage stairs. Regretfully, I cannot expect to live long enough to meet my grandchildren. Two to five years is not a long time to live, but it is a long time to be dying. For me, the anguish of knowing that I will die prematurely is amplified by the horror of understanding just how I will die, by suffocation.

The process will be slow and gradual, and in fact, it has already begun. I am dying from the inside out. My body will become progressively unresponsive while my mind and spirit remain alive and vibrant.

I dread becoming frozen in a wheelchair, unable to move, completely dependent upon others, talking only with my eyes through a computer – yet still fully aware.

Little progress has been made in treating ALS since Lou Gehrig first brought it into our vernacular with his famous speech at Yankee Stadium. That was in 1939, 74 years ago. That is shameful. Look at the progress that has been made in treating other deadly diseases in that span of time. Breast cancer, colon cancer, heart disease, TB, HIV: they are now all treatable, and many survive. Diseases that weren't even diagnosed 74 years ago, are now treatable and many survive. Why? Because they became a priority!

No one survives ALS. Death from ALS is inescapable.

ALS is largely invisible to most of our society. First, it is a very rare disease (2 out of 100,000.) Second, we don't live very long (avg 1100 days.) Third, once symptoms begin, many of us are very incapacitated and do not venture out into the community. Those who lose their ability to talk often avoid social situations. All communication must be written. That is cumbersome for all. We lose our ability to advocate by talking. When we can't move our arms, it can be embarrassing to be fed by others in public. We can't shake hands, open doors or hug our loved ones. Loss of the use of our legs means being in a wheelchair. Our culture teaches us not to stare, so instead we are avoided. When all of those muscles are paralyzed, we use power wheelchairs and speak through computers using only our eyes. Finally, we are bedridden. All of this happens within a short period of time. Some get a few years; some die within only months.

These disabilities make life difficult for us, but they also make people uncomfortable to be around us. We become isolated.

Many illnesses and charities have celebrities who champion their cause. That is not the case with ALS; we have few. We are an "orphan" disease. We need to educate the public, increase awareness and build advocacy through "regular people," just like you and me.


The Baby Wildebeest

Below is an excerpt from my personal journal that I wrote shortly after my diagnosis

Years ago, I watched a program on Animal Planet that touched me so deeply I still remember it vividly. Somewhere in Africa, a large herd of wildebeest was grazing on the plains. Stealthily, a pride of lionesses approached, hunting for their food. In the blink of an eye, the lions bolted and charged towards the wildebeest. The herd ran en masse. The lions quickly and skillfully, cut off a young wildebeest from the herd. The calf ran frantically back and forth, his panic evident. This painful dance of the calf and the pursuing lionesses went on for several long moments, but the endpoint was never in question. Inevitably, the baby wildebeest ran out of energy and couldn't run another step. Calmly, accepting his fate, he stopped in the middle of the field, folded his legs under him and knelt down. He then waited for the lions to come and eat him.

It still makes me sad. Acquiescence. I am unable to accept my fate as the calf did his. I cannot be that baby wildebeest. I will fight, although I am fighting a predator as deadly and surely as successful as those lions. Though the end is not in question, I am unable to just accept it. I will not fold my legs under me and wait to be consumed by my predator.

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Madeline Kennedy 2017