Oh, you mean Lou Gehrig’s Disease…
Even though nothing I can say will do this post justice. There are no words to describe the range of emotions the impact of watching someone with ALS has put me through.
Even though there are no thoughts that can adequately convey how deeply ALS has affected me.
You see, if you had said those 3 little letters – A L S – to me last October, I would have said, “Oh, you mean Lou Gehrig’s Disease?” And the extent of my knowledge would have been that it was a disease made “famous” by a baseball player.
It’s six months later and I can tell you that ALS stands for Amyotrophic lateral sclerosis, although I still have to Google it to spell or say the full name correctly.
I can tell you while it slowly killing you, you lose things like muscle function and the ability to breath and swallow. But, it doesn’t take your mind, so you know every debilitating symptom and regression that is happening to you. The reality is that it has no cure and generally gives a person a life expectancy of 2-5 years after diagnosis.
I learned more about ALS through the Pittsburgh Foundation’s work with Neil and Suzanne Alexander who recently launched Live Like Lou, inspired by the grace and positivity with which Lou Gehrig faced his ALS diagnosis. Neil has ALS. The more I read, the harder it was to imagine handling any disease like this with grace. It was devastating to learn “Most patients die of suffocation or other respiratory failure.”
It’s a weird twist of fate that has happened, that in a six month span, I can now name six people diagnosed or recently passed who have less than six degrees of separation to me. One was a neighbor and ‘church lady’ I’d known for years. Two are parents of friends I’ve known since high school. In a disease that has roughly 5,500 people diagnosed per year and only about 20- 30,000 patients living in the US at any given time.
One of those people is the mother of the person I hold nearest and dearest to my heart and whom I have known for over 20 years. Christopher’s mom is one of the kindest, most loving, honest, and immeasurably wonderful people I know. And, much sooner than we’d ever want, she’ll be taken away from us. Things we take for granted, she will be unable to do.
It’s one thing to read about the progression of ALS. It is quite another to experience it first hand. To visibly see, over very short spans of time, the loss of motor skills, speech, and breathing. All while viewing a person who is still caring and happy, and who smiles as she shares funny stories about life and shows great pride in your accomplishments. It’s hard sometimes to hold back the tears that threaten to overflow, but you do, so you can enjoy the happy memory you are creating together in this moment.
But in those same moments, when you realize that the person you love can no longer lift their arms to hug you, you’re aware that the goodness of their heart still lifts your soul and their laughter brings you joy. You appreciate every word they struggle to speak clearly. Those words give emphasis and clarity to what is important in life. You stop complaining, berating, or self-deprecating. Instead, you recall fond and happy memories, give voice to your appreciation, love, and pride in those around you, and share your wisdom. You find that the little things bring such immense pleasure and you hold on to every moment. You begin to be present in every moment. That is a true gift. And somehow, that gives you strength.
I now understand why people who have the diagnosis and their families become so invested in advocating and researching and generally helping others who are touched by this disease. There is no cure and there is little motivation for pharmaceuticals to invest in researching one. People die too fast, which means there aren’t enough people with it at any given time to drive the drug companies to find meds that could work. So families become the advocates and donors, storytellers and researchers.
That’s where you find real strength – patients are willing to share their stories and document the progression of the disease for future work on treatments and cures; families are willing to spend time sharing hope and resources. There is strength in numbers. There is strength in working together for a world without ALS. Even the weakest of ALS patients has the strength to light a spark of hope in us all.
That spark of hope, the hours of research, and love for a mother has inspired a site called ALS Connections. Christopher’s goal is to put tons of information about ALS together in one place so that people can make connections from research, videos, and other sites; draw conclusions; expand on technologies that might make life with ALS a little better and easier; and find others who give strength to and grace in a tough situation. The site is still being developed, but it has been rolled out and is accepting video submissions.
It’s my small way to help by finding information to share with ALS Connections and in participating in the Pittsburgh Walk for ALS, and sharing this with you so that one day we might “create a world without ALS.”
And, I can ask you to help so that I am using all my strength.
Simply Put – In the 60 years since Lou Gehrig’s death, there have been no major advances, treatments, or cures for ALS. Can we hit a home run and change that before another 60 goes by?