I just finished watching the movie, Gleason. It is the story of Steve Gleason, a former New Orleans Saints professional football player and current ALS survivor. Steve was diagnosed with ALS when he was only 34 years old. ALS, aka amyotrophic lateral sclerosis or Lou Gehrig’s disease, affects the function of nerves and muscles, ultimately rendering those with the disease unable to move or speak, though their minds remain strong.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. About 6,000 people are diagnosed with the devastating neurological disease each year. The life expectancy for those with ALS is three to five years, though 20% live at least five years and ten percent will live more than ten years. Live, as many cancer patients also know, is a relative term.
The movie chronicles the journey Steve, his wife Michel, and son Rivers have traveled, mostly since Steve’s diagnosis. It is, without a doubt, inspirational. And frustrating. And maddening. And, incredibly sad. If you watch it, and I encourage you to do so, be sure to have a box of tissue nearby. I can’t imagine that you won’t need them.
Everyone handles adversity in their own way. Steve and Michel resolved to meet the disease headlong, especially after Michel learned she was pregnant with their first child just a short while after learning Steve was entering the battle, quite literally, for his life.
Steve has the money and the fame to do a lot more than a lot of us can do. And, to his credit, he is using both to bring great awareness to the disease that has robbed him of his vitality, but not of his spirit. There is even a law, the Steve Gleason Act, that ensures that Medicare or Medicaid will pay for speech generating devices so that ALS sufferers can continue to communicate even after the disease robs them of their ability to speak.
I am not an expert, to say the least, on the ALS disease. I’ve feared it since I saw a movie many years ago about the battle baseball great Lou Gehrig fought against it. It, like cancer, is not for sissies. That’s for sure. It is a mean, mean, mean disease.
What Inspires Me?
As soon as I finished watching the movie I felt compelled to come fire up the computer and write. I have to write while the ideas are fresh in my mind or they leave me, often forever. Even when I am touched as deeply as I have been by the Gleason film and the life of Steve Gleason, my mind doesn’t always hang onto thoughts for very long. Chemo brain, anyone?
Steve Gleason inspires me. This man has allowed a film crew to follow him through some of the most embarrassing and harrowing times a person could endure. The purpose of the film is to leave a documentary behind for his son, but it also serves to bring great awareness about the disease and the needs of patients and for research. Steve knows that he likely will not live long enough for his son to really remember him in the flesh. The video journals will let Rivers know his daddy, hear his advice, and know his love, even if Steve is no longer physically here.
And, something else the film does is show just how indomitable the human spirit can be. Steve and his wife Michel, who is as heroic and inspirational as her husband, decided when he was diagnosed that he wasn’t going to die before the disease actually robs him of life. What this man has endured to keep living leaves me without words (and we all know I am rarely speechless). And, to the absolute extent possible, he is living.
Steve isn’t simply alive, he is living. He can’t walk. He can’t speak. But, the movie shows him pulling his young son on a sled across a field with his wheelchair. Making important memories. Enjoying life, despite circumstances.
Since I have been diagnosed with lung cancer, I have met many others with a similar diagnosis. The majority of us were diagnosed with late stage cancer. I think most of my friends who have lung cancer never smoked. And, nearly all of the ones I feel closest to have not been stymied by their diagnosis.
Like Steve Gleason, they decided that lung cancer is not going to rob them of life any earlier than absolutely necessary. Most of them aren’t famous nor wealthy, but all are doing what they can to bring awareness to their disease. And, they wake up each day with a passion for life, an appreciation for the fact that another day has been granted to them.
I am so fortunate that I have never felt angry about my diagnosis. I don’t know why. I am not a worrier. I don’t know if that is because of my deep faith and complete assurance that when I leave this earth, I will go somewhere better. I just know that, from the beginning, my husband and I decided that the disease will be something we deal with while we are living life.
None of us knows when we will take our final breath. I could walk outside today and be hit by a car or I could suffer a fatal heart attack. Just because I have lung cancer doesn’t mean that I will die from my disease in the next year or two or ten.
What my cancer has done for me is give me a new appreciation for life because it reminds me in a real way that life is terminal. None of us will leave here alive, right?
So, it is up to me, today and every day, to look at this day as a blessing, a gift. I can’t undo anything from the past. And, I don’t know that I will be here tomorrow. But, I know I am here right now. And, it is my job to appreciate that fact. Smile. Look around myself and enjoy the sunshine, the day, my family, friends, and pets.
What about you? Who or what inspires you?