From Diagnosis to Powerlifting: a big little leap

Hello internet, it’s been a while.

On February 13th, when I last posted, I was on the cusp of healing and had no idea. From the day I went to the hospital last May my every waking moment had been consumed with the question “what is wrong with me?” I saw specialists, took tests, had a few gallons of blood drawn, tried a new diet, saw no results, and then would start the process again with a new specialist. Finally, in December, I received my diagnosis: Ehlers-Danlos Syndrome.

Essentially, my body can’t produce good collagen. Instead, it makes some weak stringy crap that can’t hold my joints, veins, arteries, intestines, etc together properly. Thanks to the infection that landed me in the hospital in May, my brain had fallen out of touch with these dysfunctional body parts and struggled to get my food digested or my blood moved around properly anymore. Hence, the laundry list of symptoms leaving specialist after specialist scratching their heads.

Armed with this new knowledge about how my body worked (or, more accurately, didn’t work), I began trying to rehab. I ate foods gentle on my GI, hydrated aggressively, and slowly massaged each of my joints back to full range of motion. Eventually, those ranges of motion became weight-bearing. Right after my last post in February, I joined a gym again.

I was feeble, exhausted, so very weak, but determined.

And then my brother died.

I’m not ready to talk about that, but suffice it to say my brother succumbed to his long battle with depression and we lost him. It was, and continues to be, devastating. The only place I felt a little relief from the crushing loss in my chest was at the gym. So, back in my hometown in Virginia, I went to the gym I used to go to with my brother and began trying to heal.

I had no appetite so I ate purely by the numbers, for fuel. I couldn’t sleep at night so I crashed into naps whenever I was tired and when I wasn’t I rolled out and stretched and did yoga. In a matter of days my entire lifestyle shifted several degrees from “sick person” toward “athlete.” By the time I buried my brother and returned to San Diego I was in a routine of regimented training sessions, strict sleeping schedule, and a food-as-fuel mentality. My recovery was on point because it was all I cared to do.

Before I got sick I’d been daydreaming about competing as a powerlifter. My grief-zombie-shuffle around the gym gravitated back toward strengthening my big three: squat, benchpress, and deadlift. My numbers had never been good and after nine months of illness they were atrocious, but I didn’t care. The bar was moving, the weight was increasing, and my body and soul were finding ways to put themselves back together again slowly in the gym, at the table, and on my pillow every night.

My brother will never get to chase his dreams. He will never find out all the things he can be. I realized that waiting until my numbers were good or I was “ready” was an insult to him. So, I signed up for a meet.

I’m still a sick person. I have Ehlers-Danlos Syndrome, arthritis, Postural Orthostatic Tachycardia Syndrome, and the ongoing effects of over a decade battling Lyme Disease. But, I also have a doggedly determined soul. I’m used to pain, I’m comfortable in it. I’ve lived in it all my life and this gives me the advantage. Life is pain, it’s what we make of it that matters.

In the last six weeks I’ve seen the result of dialing in with elite-athlete level focus. On the outside I look like any other beginner in the gym, but if you consider what odds are stacked against me, what I’m achieving is remarkable. After decades of treatments and physical therapy followed by doctors telling me “This is as good as it gets for you,” I’m finally proving them all wrong. And I’m doing it by acting like an athlete.

Growing up as a very sick kid I faced a lot of walls. I was a five-year-old watching the other kids ride bikes from my front step. I was a fourteen-year-old sharing space in the PT office with geriatrics, my highest hope to walk as well as the 96-year-old Air Force Vet at the next table. I was a sixteen-year-old being told to drop out of soccer because my body was too fragile. I hopped around college on crutches and was too tired to do regular twenty-something things. I think a lot of people who start out being sick very young end up with a limited view on what they can do. A view that is upheld by everyone around them — parents, doctors, nurses, friends — constantly worrying and telling them to be careful.

All that turned on its head for me when I realized that strength training IS being careful. I simply take what I was doing in physical therapy and load it heavier. And then load it heavier again. And then put the movements together into compounds. And then load those heavier. It is the best thing I have ever done for my health: stop focusing on the result and instead aim for faithfulness. Be faithful to your work, and those limits may just start to shift as you redefine what “being careful” with your body means. Being careful means taking the best care of your flesh house you possibly can. Athletes treat their bodies with elaborate care, it takes only the tiniest of shifts to stop thinking of yourself as a sick person who HAS to do all this crap to keep your body working and to begin thinking of yourself as an athlete who HAS to do all this crap to make their body the best machine it can be.

And the new mentality is liberating. Sure, I’ll never break world records. Who the fuck cares? If I look at my minute-by-minute choices through the lens of athleticism instead of illness, it changes my helplessness into power. Your very weaknesses that force you to live with precise physical care turn into your strengths. Regular people can’t do what olympians do, living every second with an eye to the sport. But we can, we the chronically ill, we can make that our superpower.

I talk about my health battle not for attention or praise or even woe-is-me wallowing. I talk about it because I know there are thousands of kids out there just like me. Kids who hear nothing but no from their doctors and from their bodies. I want to show young people with arthritis or other chronic illnesses that there are paths forward to freer living. Paths that take a ton of work, paths that hurt so much, but paths that are ultimately worth it. I’m never going to stop talking about living like an athlete to combat chronic illness, and if that annoys you, cool. You can read something else.

I’m getting ready to become a bad-collagen, no-meniscus-having, broken-nervous-system, wild-heart-rate, chronic-pain powerlifter on October 12th. It’s going to suck. I couldn’t be more excited.

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Successful life with chronic illness in poetry and prose.

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Amanda Malone

Amanda Malone

Successful life with chronic illness in poetry and prose.

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