Social Impact Authors: How & Why Author Heather C. Markham Is Helping To Change Our World
You will fall in and out of love. You will be hurt and betrayed and told you’re worthless. You’ll eventually regain yourself through lots of therapy and digging through hard stuff, but you’ll come out the best version of yourself. Confident, but resigned to be alone. Yet, when you’ve come to deeply believe that your progressive condition has made it too scary for anyone to love you, you will be proven wrong by a deep love you had thought lost to time.
As part of my series about “authors who are making an important social impact”, I had the pleasure of interviewing 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.
Her memoir, Rough Waters: From Surviving to Thriving with a Progressive Muscular Dystrophy, 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.
Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?
I was born into a Nomadic air force family, the second of two children and the only daughter. We moved every few years, so I learned to adapt to new situations quickly. I was Mom’s “clumsy girl”, always falling down, resulting in broken bones or cuts that needed stitches. No one suspected I had a genetic disorder that prevented my torn muscles from healing.
I was a championship level, ranked tennis player in the state of Texas and first-chair violinist in my youth orchestra. I was expected to excel. I started high school in San Antonio, TX, and finished in Mesa, AZ before going to college at Texas A&M University.
When you were younger, was there a book that you read that inspired you to take action or changed your life? Can you share a story about that?
I read a lot of mystery stories growing up, mostly Encyclopedia Brown or Nancy Drew. They helped me understand that it’s critical to pay attention to the smallest of details, since that’s what it took to solve those mysteries. Moving constantly made it critical to pay attention to new neighborhood and school dynamics, so I could blend in more seamlessly.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Before I was officially diagnosed but after I’d been symptomatic for a long time I was away from my home and found myself in need of a bathroom. The nearest option at that moment was a Fosters Freeze. Although only in my 30’s, by this time grab bars in restrooms were a necessity. Fortunately, the Fosters Freeze had multiple stalls I thought I could use. I was wrong. When I was finished it quickly became apparent that I was having trouble getting back to standing. I just couldn’t get my legs under me. The longer I tried, the weaker I got. I thought, “Wow, you’d better figure something out before you lose all feeling and fall off the toilet with your shorts around your ankles. Then where will you be? Hmm, smarty sans-pants?” I figured, if I got on the floor, I could use the toilet rim to push off of and lever myself up. So that’s what I did. Of course, by the time I’d gotten onto the floor and wiggled my pants back in place, I had expended all of my energy. Standing back up was just not going to happen. The restroom was empty so there was no one I could ask to help me. So, I did the next best thing — I put my legs out straight in front of me and used my arms to push myself backwards out of the stall, across the bathroom floor (yes, eww, gross) to the outer restroom door. Nudging the door open, I spotted two guys leaving the men’s room and asked them to help set me back on my feet, which they did. It was the first time I’ve asked a guy — much less two guys — to pick me up (and in a restroom no less).
This story taught me that you often have to learn to laugh at yourself and get over whatever potential embarrassment you have and just ask for help … even from random strangers. I’ve had to do that frequently over the years, most recently this past February when I asked a guy to pick me off of my manual wheelchair and put me into a friend’s car. People are often more than willing to help. It just takes asking. And if my experience is any indication, it keeps life from being boring!
Can you describe how you aim to make a significant social impact with your book?
We are social beings, who learn through shared experiences and shared stories. When I was first diagnosed I looked for stories that told me I wasn’t alone, but didn’t really find any. I wished that people around me understood what was going on with me. My hope in sharing my story is to first, ease the sense of isolation for people who are newly diagnosed, and second, to create a better understanding of what’s happening physically and mentally to a person progressing through a muscular dystrophy, specifically for their caregivers and medical professionals who treat them.
Can you share with us the most interesting story that you shared in your book?
I was at a Para Surfing event and had just finished my set in the water when I saw my friend get carried out with his customized surfboard. He had a spinal cord injury at the C4-C5 junction and called himself “Surfgimp”. I focused my camera’s long zoom lens on him, hoping to get a good action shot. A few of the waves were as high as five feet, and he did not disappoint. However, he caught the last wave askance and ended up having a huge wipeout. I saw him come off the board as it went off at a 45-degree angle out from under him and he ended up face down in the water. If this was another surfer I wouldn’t have thought too much of it, but I knew that his level of injury meant he couldn’t roll himself over. The thought of that frightened me for him, and I began to count the seconds. One … two… three … four … I continued to watch as he remained unmoving, while those assigned to his water support team came rushing in. By the time I had counted “five”, two people reached him and rolled him over. I found I had been holding my own breath and exhaled loudly, while through my camera’s zoom lens all I saw on his face was a massive smile. I took a photograph as they carried him out — an image that still resonates deeply with me.
When we had a chance to talk, I asked him if it was scary … being face down and unable to move. He said it wasn’t really. He’d learned to hold his breath for a very long time, always knowing he wasn’t alone and that his team was coming for him. He trusted his team to be there for him. Even though in this case, these were just event volunteers and not part of his home team who took him surfing every weekend — he still had faith in them. I found this lesson to be profound. I know that once I find “my team”, I will never really be alone. They will always come for me and always make sure I am turned upright and breathing.
What was the “aha moment” or series of events that made you decide to bring your message to the greater world? Can you share a story about that?
My friends had been encouraging me to write down my stories for a long time, since I have a unique perspective on a rare disease. Then, one day I sat and wrote a chapter. I sent it off to people I trusted, asking simply for a “go/no-go”. The responses were unanimous: “Go, and go now!” For the next three-and-a-half months I wrote compulsively, eventually reaching four hundred pages. However, true to the title of my book, that was the beginning of the rough waters. My book spent the next four years in the hands of a person who was not qualified to get the story published. Eventually I decided to take my book back. It cost me $30,000 to do so, but reclaiming my story was the most important thing for me. This was a “make-or-break” moment for me: to continue to invest time, energy, and money into this book which I really believed in, or let it go and (figuratively) walk away.
Eventually, I found a new publishing team, who told me hard truths about my book: The original version was too long, there were too many characters, and the stories were too shallow. I decided that I believed in my story enough that I spent the next six months digging into my heart and sharing what I was actually thinking and feeling in the difficult moments of my disease. I spent another nine months getting all of the other pieces in place to reach publication. Never underestimate the power of good editors or a good team!
Without sharing specific names, can you tell us a story about a particular individual who was impacted or helped by your cause?
Years ago, I was talking to a friend and explained that I didn’t want to turn every person I knew into my caregiver. I wanted some relationships to remain separate from that role. She recently said that this idea helped her a great deal in understanding why her grandmother didn’t want her help with hygiene issues. It may seem like a small thing since she was willing to help her granny. Her grandmother, however, just wanted to retain the sacredness of that unique relationship. Sometimes we just need another perspective.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
- Let’s start with language. “Disability” and “disabled” are not dirty words, so society needs to stop pretending that they are, trying to find different labels. There is no reason to call me “differently abled” because I use a power mobility device.
- What makes me disabled is not the fact that I need a device, but how the community, society and politicians decide my need for equal access is irrelevant or a burden to themselves. I should be able to go to the same places my able-bodied daughter can go without having to call ahead and verify the physical accessibility of it.
- Businesses need to understand that making their space accessible and usable for persons with mobility disabilities is easy — it doesn’t have to be hard, scary, or expensive. Simple changes can be made to make their space more user friendly.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is creating a safe space for people to learn and grow. Lately, I’ve been reading Brene Brown and Adam Grant. Their works have helped me better understand that leaders model the vulnerability that allows people to find the courage to fail.
What are your “5 things I wish someone told me when I first started my journey” and why? Please share a story or example for each.
- You’re going to be OK. You’ll have to overcome suicidal ideation brought on by meditation, being mishandled and not believed by doctors, unnecessary medical procedures, and lots and lots of falling down. But, eventually the condition will get a name and an unsure prognosis… but that’s all of life. I needed to hear I was going to be okay. You’re going to be okay.
- Eventually you’re going to learn about Steve Gleason, who played for the New Orleans Saints and was diagnosed with ALS at the age of 33. He’ll say “It’s not going to be easy but it’s going to be awesome. Awesome ain’t easy.” This will apply to you too.
- You’re going to go back to school, not once but twice. You will end up with the perfect storm of education and experience and be perfectly placed. You’re going to help a bunch of people who need to know that doing things differently is still doing.
- Accepting a power chair doesn’t mean that you’ve given up. It will become your freedom. You will be presented with new opportunities and adventures you can’t even dream of right now. You’ll earn a tiara for talking, come in the top 5 at Ms. Wheelchair America, and become a competitive ParaSurfer.
- You will fall in and out of love. You will be hurt and betrayed and told you’re worthless. You’ll eventually regain yourself through lots of therapy and digging through hard stuff, but you’ll come out the best version of yourself. Confident, but resigned to be alone. Yet, when you’ve come to deeply believe that your progressive condition has made it too scary for anyone to love you, you will be proven wrong by a deep love you had thought lost to time.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Start where you are. Use what you have. Do what you can.” — Arthur Ashe
My dad followed tennis, so I knew of Arthur Ashe at a very young age. This quote resonates for me because it describes how I relate to my progressive muscular dystrophy. Every day I wake up a little bit worse than I was the day before. Each morning I have to remind myself:
>“Start where you are”. I wake up and do a system check to see how well the various parts are or are not working that day.
>“Use what you have.” My mind isn’t affected by my disease, just my muscles, so I may have to think of a new way to do something.
>“Do what you can.” I am stubbornly independent and have been called “annoyingly persistent,” so I do what is in my capability and rely on my team for the rest.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Brene Brown, as her work has helped me put accurate labels to the wide range of feelings I experienced during the writing of my book.
How can our readers further follow your work online?
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Authors: How & Why Author Heather C Markham Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.