I recently attended the Global Genes RARE Patient Advocacy Summit in San Diego. While there, I had the honor of co-facilitating a panel discussion during one of the main sessions.
I co-host a weekly podcast with my friend Kyle Bryant, and we expend most of our efforts in the rare disease space. The panel discussion we hosted at this event included three other advocates: two rare disease patients and the mother of a rare disease child.
On stage, we talked about facing the realities of rare disease while also living in the moment and making the most of each day. After a brief overview of the way these conditions affect the lives of the three panelists, we dug into how we have each responded to our own or our loved ones’ rare diagnosis.
This discussion was recorded before an audience and you’ll be able to hear it on the Two Disabled Dudes podcast soon. I recommend subscribing to the podcast on iTunes or Pandora so you don’t miss it.
The feedback we received afterward inspired this column.
The comments had a common theme: Laughter is often forgotten at events like these, especially when science and research are significant focal points.
With our panelists, we laughed, cried, made fun of ourselves, laughed some more, cried some more, and ended with a sort of “pick-up-the-mantle-and-keep-going” war cry.
I’m not a scientist, and I barely understand how research works in the rare disease space. To be honest, I struggle to understand how microwaves work. I wouldn’t know how to make science entertaining. Thankfully, I’m never charged with that responsibility.
But I’m never afraid to crack a joke or laugh at myself. I probably spend time every day laughing at myself. I’m grateful for a strong sense of humor that helps me remain somewhat objective instead of taking things personally.
Our panel struck a few chords with our audience. One of those had to do with comic relief in the midst of heavy and deeply personal concerns.
Laughter doesn’t make the difficult things go away, but it helps us keep our wits about us. It can help us from being hyper-focused on what might be out of our control. Laughter reminds us of life’s simple things, and challenges us to find the silver lining amid tough situations.
I believe there are plenty of things to laugh at, including the excuses we may use to avoid enjoying the simple joys in life.
Friedreich’s Ataxia 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 another 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.
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