There are life moments that are seared into our memories. A first kiss, your bride walking down the aisle, the birth of a child, the loss of someone dear … we all have them. One of those moments came for me two years ago during what I thought was a routine medical appointment. I was diagnosed with ALS, aka Lou Gehrig’s disease.
I left the office and thought: I am going to fight this – there must be a medicine, a treatment, some new study. After hours of research, I found there is only one medication and no treatments. I thought my life was over. It was one of those life moments and nothing has been the same since.
That moment, sitting in that doctor’s office as he said, “I believe you have ALS,” changed my life. I never dreamed that the simple tasks of daily living would ever be so complicated and frustrating. Never did I expect that using a knife and fork could take such effort; never did I think holding my 3-month-old granddaughter could cause me such stress for fear of dropping her! Two years ago, I received a death sentence. There are no survivors with this disease. I am not living the life I had planned. But I am not dead yet.
One’s character is defined not by the circumstances we find ourselves in, but by how we respond to those circumstances.
At first I was terrified. My worst fears could be found in this disease. I just wanted to end it all before those fears became reality. Slowly, I crawled out of that darkness. I was facing the largest battle of my life and I was armed with my faith, family and friends. I decided that my life was not over and I needed to focus on today. My fear of tomorrow could not rob me of today. With that belief and with the love and support of my family and friends I have found a new energy for life. What I found was a deeper appreciation for the everyday. I no longer look too far ahead. My bucket list isn’t exotic; it’s rather simple – enjoying the people and things that have been part of my life for more than 60 years. You see, it all really comes down to that – the people we have touched and those who have touched us.
My response was also to make some difference for the next guy who hears, “You have ALS.” So I embraced awareness and advocacy. What I found was that little progress has been made in treating ALS since Gehrig first brought it into our vernacular with his famous speech in Yankee Stadium. That was in 1939, 75 years ago. That is shameful. Look at the progress that has been made in treating other deadly diseases in that time. Diseases that weren’t even diagnosed 75 years ago are now treatable and many survive. Why? Because they became a priority!
ALS is largely invisible to most of our society. First, it is very rare (two out of 100,000). Second, PALS (persons with ALS) don’t live very long (average of 1,100 days.) Third, once symptoms begin, many PALS are very incapacitated and find it difficult to venture out.
My goal is to bring attention to this insidious disease and make finding a cure and treatment a priority. Aug. 2 was ALS Awareness Day in the City of Buffalo. More than 1,000 individuals walked Delaware Park’s ring road to raise money for research. The Buffalo Walk to Defeat ALS, which I co-chaired, was a tremendous success, raising almost $200,000.
If there is a blessing in this disease, it is learning about really living. What is living well all about? It is rather simple – appreciating the moment and trying to leave this world a better place.