“There is only one rule. You can’t give up.” This is the advice I give someone when diagnosed with multiple sclerosis. It’s probably the only rule that matters for everyone even Lance Armstrong.
I recently heard Jesse Itzler retell a story Lance Armstrong shared with him. Regardless of how one feels about Armstrong, the story puts forth a lesson, and it is a lesson with which I wholeheartedly concur and must live every day.
Lance was speaking about a time when he was struggling in the middle of the Tour de France. He wanted to get off his bike, and his coach could see Lance’s mindset and state. It just wasn’t his day. In the midst of this, his coach told him that no matter what, Lance cannot get off the bike. Lance had to keep peddling. His coach knew that if Lance got off the bike, it was over. Perhaps the coach meant the race was over, or maybe he meant Lance’s career because quitting is a fundamental mind shift from which it’s hard to come back.
When I heard the Lance Armstrong story, two things came to mind. The first was the Cystic Fibrosis Foundation (CFF).
I have spent the past few years working with the Foundation and those with cystic fibrosis. On December 31, 2018, I completed my year as Board Chair/President of the CFF Gateway Chapter and my first year as Gala co-chair. The previous years, I served on the executive committee and as committee chair for FestivAle, the annual craft beer event.
My involvement with CFF began when I was searching for a way to give back. I chose CFF because one of my closest and oldest friends has this life-threatening disease. I may have also picked them because of the aforementioned craft beer event held committee meetings at breweries. I failed to anticipate the positive impact it would have on me (and my later diagnosis).
Those with CF who are over the age of 30 are living beyond expectations a few decades ago. When most were born, high school might have been possible, but college was usually not in their future. Life expectancy charts did not allow for long-term dreams and plans.
The community and those with CF keep peddling, and they do it with an eye toward adding. That is not just those with CF. It includes their parents, grandparents, aunts, uncle, brothers, sisters, and sometimes a close friend. It is not an accident that their motto is “Adding Tomorrows.” All of that work led to small changes and significant breakthroughs – enzymes, vests, CFTR regulators, and many others.
Since 2015, the majority of the CF population is now over the age of 18.
Those I have met in the CF community know that they must keep peddling. The community acknowledges the pain. It also celebrates the successes and appreciates every win, every additional tomorrow.
My exposure to the CF community has provided an incredible view of true grit and genuine hope. It’s incredible how much insight this has brought to my diagnosis and perception of it.
This leads to the second thought. Is there a stark difference in emotions and perception between being born with a disease or condition vs. developing and being diagnosed after decades of seemingly normal health? Is this the difference between addition (of life in quantity and quality) vs. subtraction (of life in quantity and quality)? If so, maybe we need a mindshift. What can those of us with MS learn regarding how we tackle our futures and our perceptions of it?
Compare the homepages of these two organizations, and one sees the stark difference. The CFF.org homepage talks about the “dreams of people with cystic fibrosis and their families.” The background images and videos show celebratory moments, such as weddings and graduations. These are people living their lives with CF. It does not take away the pain and realities of CF, nor does it allow them to override the success of living with CF. This approach amplifies hope and grit.
In comparison to CFF.org, the National MS Society homepage regular uses pictures of those negatively impacted by MS.
There is something broken with multiple sclerosis beyond the disease itself, the risks from medicines, and the general populations’ lack of knowing what MS is. (Don’t ask me how many times someone has asked if MS is the disease for which Jerry Lewis telethons raise money.) It heavily leans towards the negative.
We should talk about how this is a never-ending fight. It’s akin to holding a glass of water with a straight arm. It is easy to do for a few seconds, not fun for a few minutes, and painful for a lifetime. Perusing the Facebook MS groups and the MS subreddit, one sees this pain and the horrible effects of this disease. We need peers to share our pain, but it trends too much on the negative IMHO.
I am concerned because of the contagion of negativity and pain. Mark Manson wrote about drama and pain.
Pain is contagious. It’s like a virus. The more we hurt, the more we will feel inclined to hurt ourselves further and to hurt others further. Our own perceived shortcomings will be used to justify further destructive behaviors towards ourselves and towards those around us.
“How To Grow From Your Pain”, https://markmanson.net/how-to-grow-from-your-pain
When I was first diagnosed, this non-stop message of pain only added to the situation and reality of the unknown. It attempted to pull down to the bottom like quicksand. It attempted to deplete hope and grit. We also need peers to share our hopes, successes, and dreams.
We can do better, and we should do better. Perusing those same MS resources, one also sees the camaraderie of the MS community. This should be the foundation to talk about our successes living a regular life while fighting MS. We need to talk about the pain while continuing to live non-perfect yet beautiful lives.
When I stepped forward, I committed to myself that part of that journey would be helping others diagnosed MS warriors. I would tell my story and share my experiences. In that light, please know that I have bad, even horrible, days. I am grateful they are rare.
A few months ago, I spent nine consecutive days in pain. The peak of the pain occurred at night. I woke up screaming because the sheets and blankets hurt. I could not take anything touching my skin. I would describe it as being burned without feeling the heat. What did I do during these nine days?
I got my ass up. I focused on being a great husband and father. I went for a run. I saw my personal trainer and did my daily running strength exercises. I went to work to lead an incredible team. I served my community.
Why? Because I remembered one fact in both the good and the bad moments. It’s something I learned from a person with CF. Every second is a gift. Every day is a gift. They are opportunities to live, to breath, to connect with someone, to achieve, to fail, to love. It took being diagnosed to hear this message.
Regardless of how I am feeling, I push never to lose sight that I was given the gift of time. How I feel and what I think should never take from those gifts. I have a responsibility to respect and appreciate them.
That brings me back to the Armstrong story and a third (bonus) realization. I realized I was on the bike, and I would never stop peddling. I am not alone. All of us are on the bike with our unique struggles – family, children, weight loss, health, money, a loved one dealing with a disease, etc.
Let’s stay on the bike and make sure we are helping the other stay on theirs. There is only one rule – you can’t give up. You must stay on the bike.
Also published on Medium.