I ‘muscle through’ LGMD challenges with a little bit of humor

I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular dystrophy. (That’s type 2E/R4 for those of you following along. No, I don’t use “2E/R4” as any of my passwords, so don’t bother trying.)

My humor is shaped by observing the world and the people around me. Growing up in the 1980s, before I was diagnosed, I cut my teeth on films like “Monty Python and the Holy Grail” and “Spaceballs,” and the comedy albums of Eddie Murphy and George Carlin. In short, I learned early that the world can be hilarious if you don’t take yourself too seriously.

Humor has served me well ever since. I have many friends who also live with different forms of muscular dystrophy, and witty, dark humor is a common thread among us. We share the best (and the worst) of social media disability content that resonates with us. We don’t do this to mock our very serious diagnoses, but rather to escape our very serious diagnoses by using humor and laughter to make a nightmare a bit more bearable.

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I’ve always subscribed to the mantra of “If you don’t laugh, you’ll cry,” and I choose to laugh most of the time.

So here’s to all of you who use laughter to combat the hand that this life has dealt you. Toward that end, I started thinking about what an online job application might look like if it focused on being disabled instead of minimizing our physical limitations. I’m already working full time, but I’m always looking for a new way to amass global dominance. References available upon request.

Indeed profile: Adaptive strategist and accessibility expert

Summary

Seasoned professional specializing in “muscling through” challenges — despite the irony. With four decades of experience living with limb-girdle muscular dystrophy, I’m a master at leaning into obstacles and finding a “leg up” on creative solutions. Adept at turning roadblocks into mere speed bumps and limitations into launchpads. Bringing strategy, humor, and a knack for leaving the box — sometimes literally, with a little assistance.

Core competencies

• Efficiency optimization: Excels at getting the most “mileage” from every ounce of energy. I also excel at using Excel.
• Adaptive problem-solving: Renowned for “rolling with the punches” (often on wheels).
• Accessibility consulting: Ride with me and park in the front row.
• Empathetic communication: Can turn any accessibility talk from awkward to “walkward.”
• Time management: If slow and steady wins the race, I’ve got a trophy shelf and the T-shirt. Often fatigued, I will still beat most turtles to the finish line, especially the distracted turtles.

I am a pro at asking for reasonable accommodations. Don’t even think about hiring me until we talk about my sweet automatic-door-opening restroom.

Experience

• Independent strategist, life logistics and accessibility adviser (1972–present)
  • Designed custom workarounds that never quit — unlike my quads.
  • Built lift-me-up support systems for high performance and higher spirits.
  • “Brace”-ing for new challenges daily, with flexibility (and orthotics).
• Resilience consultant (freelance)
  • Helped teams stay on “track” and restructure under pressure — no heavy lifting required. I can’t lift anything.
  • Coach others to “stand tall” through adversity; kneecap-level pep talks available upon request. Please advise if you have eaten anything spicy before we get on the elevator together. The air smells different at my level.

Education

• B.A. in living with intention, School of Adaptation (a never-ending course load — literally).
• M.A. in dealing with “ableds” who see wheelchair users as a “token hire.” You are seen, heard, and called out when I’m in the front for the staff company photo.
• PhD in life. ‘Nuff said.

Professional interests

Making spaces where all can “sit easy,” designing inclusion that never takes steps backward, and proving that a can-do attitude always outweighs gravity.

Objective

Eager to join a team ready to hit the ground rolling — whether that’s with a manual or a power chair. Looking to expand workplace horizons and ensure that when it comes to accessibility, everyone gets a leg up.

Please remember that this is all a joke. I do take my health and my muscular dystrophy quite seriously. But myself? Not so much. The world always seems a bit brighter when we can all share a laugh. How’s your résumé?

Note: Muscular Dystrophy News Today 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. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.