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Building a Life on the Other Side of Terminal

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Hi, my name is Megan McCleary and like any kid, I didn’t get away from childhood without some trauma. My dad was an alcoholic. I was raped, and then some before I was 18.

I was diagnosed when I was 15 with hemophagocytic-lymphohistiocytosis in the summer of 2014. I was a newly minted sophomore in high school, on the marching band team. I played the flute. I was an honor student, at the time I thought I was going to be a nurse. That was the before.

I was treated with high dose steroids, etoposide chemotherapy. I spent weeks in the ICU at Arkansas Children’s Hospital – doing physical therapy, getting treatment, learning to live again. My family watched me get sick, watched me sit at death’s door waiting for him to take me to heaven.

And then, I survived.

Since HLH, I’ve since been diagnosed with lupus (SLE), POTS, tachycardia, avascular necrosis, early on-set osteoporosis, asthma, major depressive disorder, severe anxiety disorder, PTSD, and obsessive-compulsive disorder. I’m constantly sick with urinary tract infections, ear infections, chronic rashes, butterfly rashes, strep-throat, bronchitis and so much more. I am in pain every single day of my life. I’ve had multiple surgeries such as having my knee and my hips replaced, having my bones decompressed for Pete’s sake. I take 17 pills at night, 12 in the morning and three mid-day. I pick up over $800 worth of medications. I have a wheelchair; I have a wheelchair handicap place card. I still need my wheelchair; I still can’t go a whole day without feeling pains everywhere in my body.

This is the aftermath.

I’m not telling you these things to feel sorry for me, I’m telling you these things because even though I’m a little fragile, even though I am a little scarred over, even though I have panic attacks and night terrors, even though I still baffle doctors, even though I can’t stand for long periods of time, even though I am hurting … I have peace. I have made peace with my chronic illness, but that doesn’t mean I have given up hope that there may a cure. That there will be a day I can walk without pain. That one day there will be a miracle treatment for me. That one day, I’ll be OK. I have hope still.

It has been six years now since first being diagnosed. I’m a pharmacy technician. I’m going to college at the University of Arkansas. I’m a food science major with a concentration in Poultry Science. I want to be a QA facilitator. I want to be ready for tomorrow. Despite my shortcomings, I’m going to be OK. The past was hard, but that doesn’t mean there isn’t hope. My mom (my hero) says there is no coincidences in life, that everything happens for a reason and they make you stronger. I was strong before, but I am stronger now, and I’ll be stronger yet. I’m not writing this to tell you to be happy with your chronic illness, I’m not belittling your chronic illness, but learn to be the main character in your book. Be more than your disease. I say this because it is possible to be on the other side of happiness. It is possible to hope for treatment. It may not be today; it may not be tomorrow but the world is ever-changing and the world is here for you. The world is for your taking. So, take it for all its worth. I say that because this is the after. This is life beyond terminal.

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Photo credit: Masaru123/Getty Images

Originally published: October 5, 2020
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