From surviving to thriving after muscular dystrophy diagnosis, Heather C. Markham inspires (Memoir excerpt)

If, in your 30s, you learned that you had a progressive disease that would soon take away your ability to walk (and do most things without assistance), how would you respond?

Heather C. Markham first responded to her diagnosis with fear, despair, and anger. But she fairly quickly chose to live her life to the fullest—deciding that with the right team, tools, help, and perseverance, nearly anything is possible: Learn to (para) surf? Sure! Enter a pageant? Why not? Travel, with all its new complications, to fulfill your dreams and goals? Definitely.

In her inspiring and relatable memoir, Rough Waters, she explores this journey with candor and humor.

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About author Heather C. Markham

Heather C. Markham is an engineer, assistive technology professional, public speaker, competitive Para Surfer, educator, ADA architectural barriers specialist, golfer, and award-winning international photographer.

Her company, Making Waves for Good, launched in 2018 as an umbrella for a variety of ventures including publishing and photographic projects and to help companies solve disability access problems they didn’t know they had—not just staying within ADA code but looking beyond it to make the world more accessible and usable for all.

Heather currently lives in Phoenix, Arizona, with her super snuggly Maine coon cat.

Rough Waters book excerpt

This excerpt is from Heather C. Markham’s new book, Rough Waters: From Surviving to Thriving with a Progressive Muscular Dystrophy. Reprinted with permission from the publisher, Making Waves For Good.

In between the end of the worst medication and meeting with the new rheumatologist, I was sent to an elite training course a short drive north of Edwards Air Force Base along with a group of other new electronic warfare engineers to understand EW testing firsthand. We spent two weeks at the National Test Pilot School in Mojave, California, taking the Introduction to Fixed Wing Performance and Flying Qualities Flight Testing Short Course. Half of our testing was done in an old DC-3 that had been fitted with flight test instrumentation. We would be tasked with recording readings on various displays while the aircraft maneuvered through airspace above the testing range with simulators of enemy radar systems.

I talked everything through with the instructors. They understood I had physical limitations, and I committed to working as hard as I could to keep up. I knew that the student groups of six people would be doing a “hot-swap” and the DC-3’s engines would not be powered down between them, so boarding as fast and efficiently as possible once the other group had left would be critical. Before our first flight, I had one of my friends go with me to look at the setup and work out my strategy for getting on board.

When it was our turn, four of my cohort walked quickly out to the airplane, while I walked at turtle speed as steadily as I could despite the pain, and the fifth stayed with me for safety. The first four stepped up into the thirty-inch-high rear doorway and went inside. Following close behind the group, I sat on the edge of the doorway, scooted myself backward until I was all the way in, and, with a lot of maneuvering, got on my hands and knees and crawled up the aisle to my station, where I planted my feet wide for stability and pushed myself to standing. The last person in our group held on to the back of my belt to steady me. It was difficult, but EW had paid a lot of money for me to be there, and it was important for my job that I get seated in front of that instrument panel to understand our flight test pilots’ and engineers’ cognitive load while flying. I had to figure out a way to do it.

When we weren’t recording data in the DC-3 or analyzing it for class assignments, we were taught to fly Cessnas. It was exciting since it was something I never thought I would have the opportunity to do. Our class instructor, in a typical flight suit and aviator glasses, could have been a stand-in for Tom Skerritt’s character in Top Gun. As we approached the aircraft for the first time, he watched me walk unsteadily but voiced no assumptions about my abilities.

“Can I have a minute to work out how to get in?” I asked.

“Sure.” He held the left aircraft door open and waited.

I knew I couldn’t step in because I no longer had the balance that move required. I sat on the pilot seat with both feet outside, then picked my right leg up under the thigh and swung it up and through the door and into the aircraft, then did the same with the left, and pivoted my hips so that I sat squarely in the seat facing the cockpit controls. Verifying I was in, he shut the door and walked around to the right-hand side. Getting in, he started running down the safety procedure checklist.

I turned and looked him in the eye, so he would know that I’d thought about what I was about to say. “I want you to know that in case of emergency—crash, fire, or whatever—you have my explicit permission to break my legs or do whatever else is necessary to get me out of this aircraft alive.”

He looked at me solemnly. “Thank you for telling me that.”

My words—you have my explicit permission to break my legs—echoed in my ears as I sat with the weight of them. He didn’t acknowledge whether he knew how hard it was for me to say those things or not, but we both took a beat to shake off the difficulty of the conversation.

Just before our fourth flight together, he prodded me to get going. “Let’s take off before it gets too windy and the tower won’t let us.”

“Huh?” I replied. It was already blowing pretty steadily.

“If it gets above thirty knots, they won’t let us take off. It’s at twenty-eight now; let’s go.”

We’d just finished running the in-cockpit preflight checklist, and he told me to turn it over. Hitting the ignition, I started the plane, watched the propeller get up to speed, and navigated us to the runway. I worked the throttle by pulling back on the yoke, lifted us off the ground, and made for the sky. But I fought the plane as we ascended, buffeted by the high winds. It was shaking, and I was trying like mad to keep us level. Once we reached our designated altitude, it didn’t get any better. The Cessna bucked, and I held on to the yoke with both hands like an angler trying to reel in a big-game fish.

His voice came through my headset loud and clear as he looked at me. “Let go.”

I shouted back at him. “What?” I must have looked at him as if he were an alien.

He said it again, with authority. “Let go of the yoke.”

I was sure we would drop out of the sky, but since I trusted him and believed he didn’t want us to go down in flames, I did as he said. I let go. The plane instantly glided as the wings leveled out. It was like we were on glassy seas instead of the raging ocean of air we had been on moments before.

“OK, what just happened?” I asked, confused.

He smiled. “Planes like to fly straight and level. It’s how they’re designed. Sometimes the best thing we can do is to get out of their way.”

Ah. Point taken. Maybe it was the same with my mystery disease. My body wanted to keep going, straight and level, and the best thing to do was to stop fighting it. I wasn’t programmed for that, and neither was the medical community, but eventually I’d have to learn to let go.

About the book Rough Waters

Competitive Para Surfer Heather C. Markham is no stranger to rough waters.

At age 34, Heather received a life-changing diagnosis: she had a progressive muscular dystrophy and would eventually need a wheelchair. Her walking days were going to end much sooner than she’d expected.

Despite her body’s betrayal, Heather fearlessly leaned into adventures (with a capital “A”)—performing as a belly dancer, falling in love, becoming an avid Para Surfer, winning Ms. Wheelchair Kentucky, and pursuing her lifelong passion for photography.

With humor and heartbreaking candor, Rough Waters chronicles Heather’s slow decline in mobility and her determination to live an extraordinary life—one full of laughter and joy, sand and salt water. The challenges she chronicles are both specific to her circumstances yet somehow relatable to all of us.

This inspiring memoir is also a courageous call for more empathy from medical professionals, care attendants, the travel industry, and anyone who knows and loves someone with a disability. Limits are only in your mind, Heather says, and nearly anything is possible with the right team, tools, help, and perseverance.