Below is a speech I gave to Phi Delta Theta at Purdue University on February 19, 2017. It was my privilege to represent the ALS Society of Indiana and share my story as well as encourage these students to continue their remarkable service.
My granddaughter, Amelia Jean Williams, is absolutely adorable and when I saw her on the sidewalk in front of my house in August, 2015, I couldn’t help but run down the steps of the front of my house and pick her up and give her a big grandpa hug. But in my haste, I missed the last step and turned my ankle in an epic sprain. As I lay writhing in pain on the sidewalk, poor Amelia was frightened and cried and ran to her daddy. My wife rushed me to the emergency room as the immediate swelling made us think it was broken. It turned out to be severe sprain.
It never healed for some reason. For months after that, I was unable to pick my foot up as I stepped forward with it. My “foot drop” as it is called, became worse and worse and it was becoming increasingly difficult to walk without tripping and stumbling. My sister and sister in law, both nurses, insisted I see a neurologist to determine why I wasn’t recovering from the sprain.
In February, 2016, I had neuro-muscular tests done on my legs and feet. After the tests were completed, Dr. Marlene Bultemeyer informed me that she was recommending a round of additional tests for the purpose of ruling out neuro-muscular disorders. My father had Parkinson’s and I was the director of a non-profit foundation that raised money for a retirement community and nursing home so I was somewhat familiar with a variety of these disorders. I wanted to know specifically what she was trying to rule out. I asked her rather pointedly, “Dr. Bultemeyer, what do you think it could be?” She answered, “I think you may have ALS.” I responded quickly and in a positive tone that surely puzzled her, “OK then, let’s get started.” She was surprised by my response and didn’t think I understood the gravity of it all so she clarified, “You know, ALS is fatal.” I responded again in a positive tone, “I know. Let’s get going on the tests.” So one year ago this month I was diagnosed with “Probable ALS”. Doctors now suspect that my ankle sprain was brought on by the very early onset of the disease and decreased muscle strength.
After a couple of months of additional testing and no new discoveries that would point away from the initial diagnosis, I was referred to the ALS Clinic of the IU Neuroscience Center in Indianapolis. It is one of the nation’s leading clinics for diagnosing and researching ALS as well as for managing symptoms for persons with the diagnosis.
ALS is a “clinical” and not a medical diagnosis. To determine if it is ALS, all other possible diseases or causes must be ruled out. So, after even more obscure diseases were ruled out with additional testing, in June of last year, the ALS Clinic in Indianapolis changed my diagnosis from “probable ALS” to “Definitive ALS”.
But I was pretty sure it was ALS before that. I knew what was happening to my body. Muscle fasciculations, which are involuntary movements of the muscles, like when your eyelid twitches at times, were progressing up my body and were starting to occur all over, in every muscle, all the time. Muscle cramps were occurring more frequently and moving up from my legs to all over my body. I learned that these are symptomatic of slow muscle death.
Since then, I’ve found out so much more about ALS. Amyotrophic Lateral Sclerosis is also known as “Lou Gehrig’s Disease” and is named for one of the greatest baseball players in history and fellow Phi Delta Theta brother. It is the destruction of the motor neurons in the brain and the spinal column which control voluntary muscle functions such as moving the arms and legs, chest muscles which help us breathe, the diaphragm, and the throat muscles which assist in swallowing. Amyotrophic literally means no muscle strength. When the motor neurons start dying, voluntary muscles also start dying until there is no movement in them whatsoever. Death most often occurs from suffocation or pneumonia because the chest muscles and diaphragm cannot help us expel the infection.
The progression of ALS is purely linear and 100% fatal. There is no “remission” period or treatment that changes the linear progression. However, the line may be precipitous for some and more gradual for others but it will never abate until it has destroyed the voluntary muscles necessary to maintain life. The only course of treatment is to reduce the severity of the symptoms; the cramps and twitches. Seventy percent of persons with ALS live 2-5 years.
For those whose onset of the disease is in the throat region, that progression is tragically quick because the throat and chest muscles die first and, thus, the person’s ability to breath and eat are quickly affected.
For those, like me, whose onset is in the limbs, specifically my feet and legs, progression is a slower. This process of motor neuron and muscle death is working its way up my body from my legs. Muscles in the chest and throat will eventually die and then death comes the same way; through suffocation or pneumonia.
Now there is a way to maintain life after the voluntary muscles have died. A machine that breathes for the patient and a feeding tube can maintain life. Dr. Steven Hawking, for instance, is kept alive by such remarkable equipment. I, however, have told my family that I do not want to live that way and be a burden for my wife.
I’m not sharing this with you so that you can pity me. On the contrary, I am not to be pitied, I am to be envied! I have wonderful sons, daughters in law, grandchildren, and a wife of 34 years who can only be described as a gift from on high. And I have never once asked God, “Why me?” As a matter of fact, my upbringing, my life experiences, and my wonderful family make me better prepared for what lies ahead than anyone I can imagine.
I have long believed as Thomas Campbell wrote in his poem, Hallowed Ground, that “To live in hearts we leave behind is not to die.” Much of what I’ve been taught and now believe about the true meaning of life is to leave a legacy worthy of retelling over and over again, to generation after generation. In this way, we leave an undying legacy. We live in hearts we leave behind. I’ve always believed this because my grandfather carefully and deliberately wove this into my heart as I grew up.
So I’m in a race. From now until muscle death prohibits me, I will tell stories, pass on things which prompt the story telling, write letters to my grandchildren and children yet to be born, and I will also pass on this legacy in the book I am writing called, “A Different Kind of Grandpa”.
I want everyone to know, while I have the strength to talk and write, that it is not what we do for ourselves that lasts. It is in the story we live each day and the stories others tell about us long after we are gone.
What story are you going to live? Will it be a story of self-consumption in career and money? Will it be a story of devotion to those whom you love and to those who need your love and compassion?
Every morning I wake up I am reminded that I’m running the last mile in a marathon. I wake up with diminished strength each day. Each muscle twitch and cramp reminds me that my muscles are dying and my life will likely end in a predictable way as determined by this disease and I am powerless to do anything about it. So, I have an intense urgency to love, live, laugh, share, and leave a legacy that lives in hearts I leave behind.
But so should it be with all of us. That’s why you’re here today. You are here to laugh, share, enjoy life, and do something that will make a difference for people you will likely never know. You raise money today both for services to people with ALS and to also find a cure for generations yet to be born. I join you in that work. I volunteered to be part of a research group studying a new promising medication which is a synthetic copy of material found in bee hives. The money you raise today helps fund such research. THANK YOU!
That is your legacy today. I quote Dr. Albert Schweitzer, “The purpose of human life is to serve, and to show compassion and the will to help others.” That’s what you are doing today and I deeply admire you for it.
Please know this. Every dime you raise, every event in which you participate, every effort you undertake for ALS truly does make a difference. You may never see the results of your effort but someone, some day, perhaps sooner rather than later, will finally be told by their doctor “You have ALS but I have good news for you. There is a cure!”
Bless you for what you do here today. Now go and live an inspirational story that will be told by generations yet to be born.