Those of you who follow my Instagram or Facebook pages may have noticed that I was in Philadelphia last week. It was my first time actually leaving the city’s airport, which I have flown in and out of at least a dozen times in my lifetime.
This trip was different. No connecting flight meant I didn’t have a fear of my Lambert-Eaton myasthenic syndrome (LEMS) causing me to lose steam between gates. I didn’t need to ask for wheelchair assistance. My feet were staying on the ground in Philadelphia for almost a week!
I went to Philly to meet with the BioNews Services team to discuss how Lambert-Eaton News will be upgraded this year. The patient experience is going to be unmatched for LEMS patients.
I wasn’t the only one brought to Philly for this meeting. Associate columns director Matt Lafleur and forums director Kevin Schaefer came from other states. Other members of the BioNews team descended on the Philly office from their remote locations. BioNews founders Chris Comish and Mike Nace were there as well.
Meeting everyone in person for the first time was like meeting anyone you’ve become friends with online and then meet in real life. The quick mental processing of the flat web image you associate with them turns into flesh in front of you. It is like a black-and-white photo that suddenly morphs into a high-definition film with surround sound. There is always so much more to the meeting than you expect.
I learned that behind everyone at BioNews is a story. Each person astounded me with their tenacity, brilliance, drive, and determination to overcome all odds. I’m not sure who or what stood out most.
It may have been watching Kevin use a Star Wars-esque robotic arm attached to his wheelchair to feed himself because his rare disease, spinal muscular atrophy, limits almost all of his body movements.
It may have been learning that Matt, who because of Friedreich’s ataxia needs to work harder than anybody I’ve met to speak or to decipher conversations in large crowds, has a hysterical, self-deprecating sense of humor.
Perhaps it was noticing that columnist, forums moderator, and HR team member Brittany Foster needs oxygen when walking outside from one meeting to another, or from a ride with Uber to whichever high-rise office building, because of her pulmonary hypertension.
Could it have been listening to Luisa Palazola, the genius behind the Instagram presence of Cystic Fibrosis News Today and almost a dozen other accounts, talk about how she never can meet another patient with CF because of the risk of exchanging bacteria types that could kill one or both?
It may have been meeting Matt’s friend, Kyle Bryant, who navigated the restaurant in a wheelchair before I learned he is featured in a documentary film about the bicycle Race Across America, which he participated in to raise money for the Friedreich’s Ataxia Research Alliance. When I asked how far he rode each day in his trike for the relay, he responded with a serious look, “Only 60 to 80 miles per day.”
I can promise you that witnessing the mutual respect and the compassionate, yet never condescending, attitude with which everyone treated one another left me with no doubt that my column, my rare disease patient focus, and my energy have landed in the best place on planet Earth.
I spent my last full day in Philly with my LEMS friend Romy Braunstein, whose life mission — other than making everyone laugh — is to educate others about having invisible symptoms that often delay diagnosis of rare diseases. “Romy & Dawn’s Philadelphia Reunion” was an afternoon I will never forget.
When she took me to see the Rocky statue, I read the quote written on a plaque at the base of the statue. It summarized my entire experience last week at BioNews:
“It’s not how hard you hit.
It’s how hard you can ‘get’ hit
And keep moving forward —
That’s how winning is done.”
If a rare disease hits you hard, you can turn to BioNews Services to find your community. You can trust that its leaders have all been hit and hit hard, and despite the odds they keep moving forward. That’s winning.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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