We are only as sick as our secrets.
How many times have I heard that – without really understanding its deepest meaning?
As I hobble around and speak with my garbled and slurred new voice, I have started paying more careful attention to the reactions of people I meet. Most who know me and my story are accepting and supportive, reaching out to lend a hand, flash a knowing smile or circling in for a hug. I love those people and the warmth and comfort they bring to me. I hope my return smiles, nods and hugs also give them some warm evidence of that love I feel.
But I can’t help noticing in many people who do not know me (and a few who do) real signs of fear and denial. They avoid eye contact. They make deliberate changes in their paths to avoid me. If with children, they often take pains to shield me from view.
Now my appearance is by no means grotesque. But my gait is different enough and my speaking indistinct enough to allow the label “different”. I get the sense from some people that all of us less than perfect should be put away. Kept out of sight. Become a secret.
But I cannot keep my ALS a secret. It is out there front and center for me and others to accept and deal with as best I and they can. It is not going away. Unlike a bad haircut, it will not get better.
The good news is that my ALS is not contagious. But the opportunity to share love, support and hugs is certainly contagious — but in a good way. All around me I am finding friends reappearing after many years to embrace and reconnect. I am finding new friends drawn by love and respect to stand with me. I am making new friends who are also battling our disease — we cling together and are all stronger for it.
It is clear that we are collectively increasing the amount of love and caring in the universe by a significant amount.
But none of that would be happening if I withdrew and kept my ALS a secret. Or if my fellow PALS did the same. I am coming to understand that I have an obligation to share my adventure to enable others around me to have the opportunity to experience the love and connection that has already had such a positive impact on me. And it is clearly not pity that is being exchanged here. We are celebrating life, affirming our humanity, and strengthening all our lives through these connections.
So no secrets. No hiding. No excuses. I am here, ready and able to engage. Giving and accepting hugs and love.