Join Peta and Heather C Markham, author of Rough Waters. Heather candidly shares her experience of living with progressive muscular dystrophy.
Heather explores the emotional struggle, acceptance, and empowerment she found after losing her identity as someone who walks; someone with a disability.
Heather's fantastic book Rough Waters https://www.heathercmarkham.com/book
Connect with Heather:
Heather's Website: https://www.heathercmarkham.com/
Connect with Peta:
Peta [00:00:02] Hello and welcome to the I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have author Heather Markham. Heather's book has just been released and it's called Rough Waters documenting her journey in accepting her Disability. Heather was so open, honest and enrol in the conversation you're about to hear. I hope you enjoy it. It really gave me a better insight of what it's like for Heather. Living with her disability and her perspectives from my perspective were at times quite confronting but refreshingly honest. So without any further ado, let's hand over to Heather.
Heather [00:01:07] Hi, I am Heather Markham, chief creative Officer and owner of Making Waves for Good.
Peta [00:01:15] Heather, you are a person of many hats. You have many amazing skills and talents which we'll get into. I have no doubt. But you're here for a very important reason. Can you tell me about your book, Rough Waters?
Heather [00:01:30] I would love to tell you about my book, Rough Waters From Surviving to Thriving with a Progressive Muscular Dystrophy. Through the physical, emotional and mental struggles in my twenties, getting diagnosed in my thirties and now living with a limb girdle muscular dystrophy, I tell it in three sections Health stand, pivot and transfer, which trace my path through the diagnosis and learning to live with it and eventually accepting and thriving.
Peta [00:02:01] I don't know how many times I've heard those three words in my life, so I'm sure it would resonate with many people listening. So I, I really love that. Play on words. That's great. Thank you for the audience to best understand. I think it's probably best to start from the beginning. Tell me about who you were and where you were in your life before you became disabled.
Heather [00:02:25] So I was mom's clumsy child, but we didn't really know that anything was wrong with me. In my twenties, I injured my back and it was kind of the first sign that something might really, really be wrong. I got officially diagnosed in 2002. 12 years after my initial injury.
Peta [00:02:46] That is such a long time to not know what was going on, and I'm sure not to be believed.
Heather [00:02:54] It was frustrating because I knew something was wrong. I just couldn't get a doctor to agree with me. I even had one doctor say, you know, you should really like, just quit your job rather than take an injury. And I was horrified. Just the amount of emotional. I hate to use the word abuse, but I'm kind of going to use the word abuse at the hands of medical professionals who were supposed to be allies. One doctor even said he was going to tell the insurance company that I was absolutely faking. And when I started to cry, he said, See how relieved you are. They said, They're calling me a liar and I'm not lying. When I saw my first doctor in 2002, he said, okay, you have a limb girdle, muscular dystrophy. I said, okay. And he's like, ET, it's a garbage can term. You don't have a life and you don't have Duchenne. And we don't know after that. So, you know, eventually you'll need a wheelchair. Here's some pamphlets.
Peta [00:04:04] What a thing to say, that it's a garbage term like it's an all encompassing. But trying to characterise it like that. Like it just goes to the idealism that is embedded within medical professionals sometimes.
Heather [00:04:20] Absolutely.
Peta [00:04:23] What was the feeling like for you personally when you got diagnosed?
Heather [00:04:29] So there was some relief.
Peta [00:04:33] I was like, Oh, hey.
Heather [00:04:35] Somebody finally believes me. They actually know that something's wrong and they don't think I'm making it up anymore. And then there was a lot of crying. A lot. A lot. A lot. A lot. A lot. A lot crying because I saw my future literally get ripped away from me. It felt like everything had been flipped upside down. And they were the information was, okay, your hips and shoulders are going to be affected. You'll have problems doing things like brushing your own hair. And typically, 20 years after onset, people end up using a wheelchair. So I started doing the math. Thinking that I would have until roughly the age of 42 before I would end up with the wheelchair, and I ended up with one before that. Before diagnosis. I had earned a bachelor's in elementary education and a master's in computer science, and I was working at Edwards Air Force Base doing computer science for the Department of Defence. And when I got diagnosed, I was like, Oh, okay, this is changing things because they wanted me to get in and out of aircraft. And there were things that involved walking and climbing and things that were becoming very, very difficult. And I used a cane and eventually used a scooter just for mobility and saw that things were going to have to radically change.
Peta [00:06:20] Before we get on to how you sort of pick yourself up and redefined yourself, how would you recommend medical professionals conduct themselves when they are delivering a diagnosis to someone today?
Heather [00:06:36] A little compassion would be great. Okay. A lot of compassion. The physician who gave me my diagnosis was just very matter of fact, like he was talking about the weather and without any real sense of the fact that. He was delivering news that ripped my future completely away from me. And. That made it worse.
Peta [00:07:07] Why do you think that compassion is sometimes missing?
Heather [00:07:13] In the United States. Our health care system is so broken. And insurance companies are dictating how long doctors can spend with their patients. And so I don't think that a lot of time is built into the system. And until there's a way to have more time available for doctors to spend with patients, whether the insurance companies allow it or whether the doctors say, this is what I have to do. And just slow all the way down. I think the system isn't going to change.
Peta [00:07:52] Apart from at work. What were the other significant challenges you faced in the process of adjusting?
Heather [00:08:01] In 2000, when I was finishing up my graduate degree, I had taken up belly dancing because it just seemed like a lot of fun. And it got harder and harder to hold my arms up. If I can't hold my arms out away from my body anymore. And my balance got worse and worse over time. And so I think my last performance was in 2005 or 2006. And eventually I ended up playing the drum for my troop. So that was how I got to continue being with my friends, wearing pretty clothes, performing and being involved in the community. So it was just a matter of pivoting. And readjusting my understanding of what I could do physically. And what I couldn't do.
Peta [00:08:59] So when you first got diagnosed, you obviously had a bit of time to to become comfortable with it. It wasn't like were going to be in a wheelchair tomorrow. You had time to really shape your life and understand how you wanted to live your life based on your abilities and your motivations and your wants and needs. But how do you think your disability affected your identity and your disability identity? Interacting with Heather.
Heather [00:09:30] So. We all have pieces of our identity. Right. I'm a daughter. I'm auntie. I was was a belly dancer. Okay. I was a computer scientist. My first idea, that piece that I really, really lost was my identity as someone who walks. Okay. And so that was like, hello, I'm not a person who walks anymore. Like, I don't what that really is. It's like, how does that how does that work? Right. And so that was a big challenge. But there are many identities that we go through in life, and I think it's just a matter of understanding and accepting that this one is God.
Peta [00:10:28] Can you help me understand as someone who's never walked? Can you help me understand why walking holds such value to so many able bodied and disabled people?
Heather [00:10:42] Sure, because we live in an A-plus society. And when Christopher Reeve was injured, his big thing was, I'm going to walk again. And he never walked again. Right. But that was his goal, was to walk again. Is it simply because. Disability is historically. You know the history. It's ugly. That many societies through history and euthanized. Hmm. The people in their community who became disabled, you know, whether compassionately or not compassionately.
Peta [00:11:26] You look less disabled if you can walk. Yes. So how did you feel when you did end up getting a wheelchair? Was it as scary as you thought it was going to be?
Heather [00:11:41] Sitting on a wheelchair at a conference for the very first time where I knew that this was my future. I was terrified. And overwhelming. And I recently talked to the woman in L.A. referenced in the book. Her name is Ginger. And she was with me and she said, You're staying in this thing. And she waved your hand like she was on a game show. You're going to love it. Look at the prize you've won. And I'm like, Oh, no, no, no, no. This is awful. And I said, And I was really brave and I didn't cry. She's like, Oh, you blubber like a baby. She said, We all cursed like you cried. I cried. The mobility equipment dealer cries. Everybody was acting that day. So it was terrifying. I didn't know how I was going to drive. I didn't know how I was going to participate in sports. I didn't know if I was ever going to date again. I didn't know how I was going to go through college. I didn't know if anyone was going to hire me. Like, all of these things were going through my brain and I was like, okay, what am I supposed to do with this? I had only ever seen people use manual wheelchairs. And I knew that I was never going to be able to get out of a manual wheelchair. I was losing strength in my hands. Now, when you talk about identity, I had been a violinist. I don't have the hand strength or the flexibility to play the violin anymore, so that identity as violinist is gone, but it morphed as a musician to be a drummer.
Peta [00:13:36] Going on from that day where you sitting in the first wheelchair and it's really overwhelming and everybody's crying around you and you're crying. How do you then fast forward and you're in this wheelchair, Kentucky.
Heather [00:13:52] When I was leaving California and moving to Pittsburgh, I was like, Oh, I'm going to need something to do. And I use a wheelchair. So I went looking up things to do and to not miss Wheelchair America. And I was like, Okay, what is this? Welcome to the Accomplishments Pageant. And Miss Western Kentucky is a subbranch of the state. You win your state and then you go on the Nationals. Well, by the time I got to Kentucky, I was like, Well, I have two master's degrees. I like to talk. This is fantastic. And so I did the pageant and I won. I was like, Ha! I have a tiara for running my mouth. The very thing that got me in trouble all through school.
Peta [00:14:34] Talking about the book again, because I'm very conscious and I really want listeners to this podcast to read your book because I think it's really valuable. But speaking as the author, what would you like the readers to take away after reading your book?
Heather [00:14:50] I hope readers will take away a few things. One, if you're a person who's diagnosed with a progressive disease or with any kind of disability, the most important thing to understand is that you're not alone. You have community. Their family members and the medical community to have more insight into what it's like really, really living with a progressive disease. And my uncle and aunt, I'm just finished the book and that you said we had no idea any of this stuff was happening to you. We had no idea that's what you were thinking or feeling or struggling with. And I think it's valuable to them to have that insight. They've even thanked me for it, which is pretty nice.
Peta [00:15:49] For the audience that haven't read the book. You come from a military base family. Do you think that upbringing informed? What you thought a life with a disability would be like and why possibly it was so difficult for you to go into something like a wheelchair.
Heather [00:16:11] So being raised on air basis, I never saw an adult who had a disability. And in my school I never saw a peer with a disability. And the representations in the media were very negative. My parents expected me to be able to do things on my own. I was very much expected to exceed Excel. There was no whining, there was no complaining. We weren't we are not interested in whatever unhappiness you have. We are not going to hear your pain. Will suck it up, Buttercup. Let's go. And so the challenge of I can't. I'm tired. Well, everybody's tired. Get up. No, I'm exhausted. You know, Why are you exhausted? We just walked five blocks. That can possibly be that bad. You don't understand. And so there were those challenges. And then. Oh, there's a wheelchair. What do you mean? Why can't we put you in the car? What? Why do you need special things all of a sudden? Like. How dare you have different needs than the rest of us? So that felt hard. Hmm.
Peta [00:17:34] I'm really sorry. That said so, so difficult. Very unfair.
Heather [00:17:39] Life is unfair. You know that.
Peta [00:17:43] What do you wish people better understood about living with a disability?
Heather [00:17:49] It's hard. Let's just get really brutally honest. It's hard, but it's not less than. It's different, but it's worth it. We have some really great examples in public figures, right? People who've had accidents. Christopher Reeve in the U.S., Right. Steve Gleason, American football player, went from American football player to having A.L.S. and he was diagnosed in his thirties. And he actually says it isn't going to be easy. That's going to be awesome. And that's because he chooses that. And you have to choose how you're going to show up. And that's no different whether you're able bodied or disabled.
Peta [00:18:49] Thank you for listening to this episode with Heather. I hope you enjoyed it. If you did, can I encourage you to write and review the podcast on whatever platform you're listening on and follow the show? It helps more people find the podcast. Also, if you would like to ask me a question for a future episode of the podcast, you can get in contact with me by my Instagram. My handle is at Peter Hook or via email. I can't stand podcast at gmail.com. Thanks again for listening and until next week. Have a good one, guys. Bye. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the Burrawong people. Where this podcast was recorded.