Greg Marshall has pulled off the seemingly impossible. He's written a memoir that is poignant and hilarious. It's called "Leg: The Story of a Limb and the Boy Who Grew from It."
Other titles that were bandied about included "The Kid with the Limp," and "It's a Wonderful Leg and There's Absolutely Nothing Wrong with It and My Mother Did the Best She Could in Spite of Having Cancer and Five Kids and a Husband Who Died of F---ing ALS."
The book is an entertaining and enlightening chronicle of Marshall's life so far, including his discovery when he was almost 30 that he had cerebral palsy since birth, not "tight tendons" like his parents told him.
Marshall told Wisconsin Public Radio's "BETA" that his mother was "kind of a tall tale teller.''
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She would "go so far in the other direction of not only not acknowledging it, but completely papering over it with this kind of dazzle camouflage of saying, 'It's a wonderful leg and there's absolutely nothing wrong with it. And, by the way, your dad died of ALS.'"
Marshall said he wanted to include his mother's reaction to his disability in the title because of the way it also encapsulated her reaction to other family members' health issues.
"It was kind of this whole soup of disability in my family. But it wasn't just my leg and my cerebral palsy, which wasn't talked about. It was kind of how we're all of these other disabilities in my family — which ones were valorized and celebrated and which ones were ignored and minimized."
It's amazing how brave Marshall is in confessing his most intimate thoughts. There were plenty of stories he could've shared, especially related to his mom's heritage and being adopted into a large Basque family, but he culled them because it didn't quite fit with the scope of the story he wanted to tell.
"I really wanted to track queerness and disability as sources of intimacy in my family and see how something like my mom's cancer shaped her as a storyteller, as a survivor, as the hero of her own story and as a writer, and how those things shaped me as well. And kind of on down the line."
Marshall discovers he was born with cerebral palsy
Marshall's parents told him that he "tight tendons" instead of revealing the truth, which was that he had been born with cerebral palsy.
Why does he think that they did that?
"Oh, boy. That's sort of the central question of the book," Marshall said. "I think that they just didn't want me to live with what they perceived as limitations or with stigma. And I think in some ways they were right. I don't think that they're at all the villains of my story. They're really two of the heroes of my story. But it's more about kind of a system-wide, society-wide perception of how we reckon with our bodies and how we find our own places in the world in spite of our differences."
Marshall said he does wish he knew about his condition earlier. He said by having all the facts, he could've been in command of his body.
"And then I could have been the hero of my own story, in the way that my mom was the hero of her own story with cancer and writing her (newspaper) column."
So, how did he discover that he had cerebral palsy?
Marshall was applying for private health insurance in 2014. His insurance application was flagged.
"I had grown up having surgery on my hamstrings and Achilles tendon and physical therapy. So a lot of the trappings of cerebral palsy, a lot of the treatments of someone who has cerebral palsy," he explained.
"And so whoever was looking at my insurance application saw those things and just asked me, 'Hey, so what is the source of your traumatic brain injury?' And I was so taken aback. I was like, 'What traumatic brain injury are you talking about?'"
He got ahold of his medical records and saw sentences such as, "To whom it may concern: Greg Marshall has spastic cerebral palsy related to prematurity."
"After I read those medical records, I gave my mom a call, and part of me was sort of expecting her to be like, 'Oh my gosh. Well, you always knew that you had cerebral palsy.'"
"But her reaction was very much the other direction, where she just kind of was in this panic about it," he said. "But I think it really clued me into the magnitude of that lie of omission or that fib, that it kind of really was this big deal. And her reaction, as much as anything else, made me want to go back into my childhood and reexamine what had happened."
Marshall's mother battles cancer when father is diagnosed with ALS
Marshall's mother was still battling cancer when his father, Bob, discovered a muscle twitch in his shoulder while he was training for the Boston Marathon. This twitch was an early symptom of ALS, or Lou Gehrig's disease.
"It was the indication that he had a terminal diagnosis and that he was facing a neuromuscular condition that would essentially kill or diminish nearly every muscle in his body," Marshall explained.
"His ALS was unfortunately really aggressive, and he went on a feeding tube that summer and he was on a BiPap for a few months and then went on a respirator and lasted about a year."
Marshall writes in the book about a moment when he and his dad took a drive up to one of the canyons near their house in Salt Lake City.
"My dad and I kind of awkwardly sit on these rocks, and he just says, 'You know, I'm starting to understand a little bit more about your leg. It just never really goes away, does it?' That was kind of a launching point where we started to talk more intimately about our bodies. Those conversations that I had with my dad were the first times where I did directly use the word 'disabled.'"
At the time, Marshall said, he didn't know that he had cerebral palsy. He asked his dad questions like: "Do you think of yourself as disabled?" and "Do you have ALS in your dreams?"
"I think we were able to just relate to each other on a really deep, meaningful level," Marshall said. "And I think to see someone like my dad — who had always been my caretaker, who'd always been so able and active and, you know, a skier and a runner — to see that you kind of both are and aren't your body and that there are parts of you that really do transcend your physical limitations, but also that a disability is a profound part of your identity. And that it's okay to talk about it, and okay to reckon with it, and okay to have feelings about it so that hopefully you can get to a place of joy, and acceptance and celebration of those things."