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Like Watching Birds Fly: A Runner's Journey With ARVD/C

Since getting my ICD implanted, I've been shocked three times. At first, I ignored what the doctors said and kept exercising, convinced they had misdiagnosed me and that this would all go away; everything would be like it used to.
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When I see people running outside, it's kind of like watching birds fly. Yet, only a year ago, I had run my sixth, and what will likely be my last, marathon. I had been running competitively for 10 years, having garnered medals and trophies that my mom still holds onto, having set the girls' outdoor track 3,200-meter record at my high school, and having met some amazing runners who inspired me in many ways. I miss the feeling of the runner's high. Running was like magic... the best drug... and now, more toxic to me than heroin.

I am 25 years old and was diagnosed with ARVD in June 2013. It still feels unreal. It took a while for my brain to catch up with everything that had happened and for me to come to terms with my diagnosis. I think my parents are still in denial... they keep having me do additional tests -- Chagas disease? A thyroid problem? Anything but ARVD? -- because it's so hard for everyone to understand and accept how I was able to push my body to the limit for this long when I had an underlying heart condition. One of my training buddies said it didn't make sense; as a marathon runner, my heart should have been the strongest part of my body... and now it's the weakest.

Since getting my ICD implanted, I've been shocked three times. At first, I ignored what the doctors said and kept exercising, convinced they had misdiagnosed me and that this would all go away; everything would be like it used to. My condition got worse. I was put on beta blockers and had an ablation in October. I got shocked running no more than 25 feet across the street to catch a bus. I realized I couldn't run at all anymore, even for a few seconds, but thought I could still do weight training. I was wrong... I got my third shock doing a 10-minute arm workout with lightweights. I realized I can no longer exercise at all, and will likely need to be on medication to control my heart rate for the rest of my life.

Some of my friends have told me this is a blessing. There is of course more to the story. Before I was diagnosed, I had been a crystal meth addict for almost a year. I started using in August 2012 up until June 2013. I would snort or smoke meth in the morning, then go for a run -- sometimes 20 miles -- maybe do some weight training or swimming afterwards. I would stay up for days at a time, either partying or studying. I wanted to do everything, to be "superhuman," as my best friend used to say. At the time, I thought, how else could I be a competitive runner, straight-A student, researcher, hardcore partier, and psychonaut all at once?

As blinded in my thinking as I was by meth, I didn't notice the signs that something was wrong. I collapsed three separate times while running. I didn't know what was happening at the time, but now I realize -- and it has been confirmed by my team of cardiologists -- that I had gone into ventricular tachycardia (possibly fibrillation) and escaped sudden death three times. The first time I thought I had done too much meth and had a panic attack while running. A nice passerby gave me some water and wanted to call an ambulance but I told him not to. When people asked about the scrapes on my shoulders and knees, I said I fell off a skateboard. I didn't want anyone to know I had a drug problem.

The second time, I was running on the same path as before when it happened. This time I had lost consciousness, probably for a minute or two. When I opened my eyes, there was a man on a bike in front of me, and again I was offered water and an ambulance call. At first, I refused the ambulance, but then he said, "Are you sure? Your lip is busted, it looks like you'll need stitches." I also realized I was too weak to walk. The first time I collapsed, I lied down on the ground for half an hour and then was able to get up and slowly walk home. This time, I kept getting lightheaded and dizzy every time I tried to get up.

At the hospital, they wanted to do a bunch of tests to figure out what made me collapse. Again, I was afraid of anyone finding out about my drug problem, so I refused the tests and insisted that I be released. They had me sign a paper basically saying I wouldn't sue them and it was against medical advice, and they let me go home. The entire night, I couldn't sleep. My whole body hurt, but the pain in my head was particularly excruciating. I went back to the hospital around 6 a.m. for a CT scan. The scan showed no damage so I was allowed to go. I went to a Marilyn Manson concert later that night. I had a backstage meet-and-greet pass. Manson asked me about the stitches on my mouth, so I told him I fell. He gave me a kiss on the cheek.

The third time that I collapsed while running, I was visiting my parents in Baltimore and had gone running with a long-time friend of mine. All I remember is we were going at a slow pace and talking, when all of a sudden, I was back in California with my friends in the Mojave Desert, like I had entered a dream. Then I opened my eyes, felt the blood rush back into my body, and saw my friend standing over me, looking mortified... like someone had died. He later told me that I was unconscious for maybe 10 minutes and he had to do CPR. Legally, I had died. Sometimes, it feels as if I'm in a dream, and I wonder if I really am dead or alive. Maybe this is all an illusion, made up of random combinations of fragmented memories and dreams from when I was alive. I have had many near-death-experiences -- drug-induced or otherwise -- but none of them stand out in my mind like this one.

After my third collapse, I was hospitalized for a week as the doctors tried to figure out what was going on. I was stuck in Maryland, and all I wanted was to go back to California and return to the lifestyle I had before. Not only that, but I was dealing with horrible meth withdrawals the entire time and desperately craving the drug. I became psychotic and paranoid, yelling at the doctors that they're only keeping me here so my insurance can fuel their paychecks. I demanded that the hospital release me so I could catch my flight back to California. When the doctors told me that my EKG, MRI, and other tests all showed serious abnormalities and they couldn't release me without a defibrillator, reality finally hit. Clinging onto my secret, thinking I would take it with me to the grave, I finally let go of my defenses. I told my parents and the doctors that I was a meth addict and a recreational user of various other drugs. Unfortunately, it didn't change my diagnosis. I still had ARVD.

I've had to change my entire lifestyle and slowly adapt to having ARVD. When I returned to California and re-entered my doctorate program in clinical psychology, everything felt impossible. I was dealing with ARVD, addiction/recovery, countless new and old psychological traumas, living on my own, and the demands of school all at once. Sometimes, I thought it would be better if I had just died before any of this could happen, or if I had never been born in the first place. My mom thinks the universe has a bigger purpose for me. Maybe I had to go through all of this to come to this point... to achieve the wisdom that I have now and the strength to overcome future obstacles.

-- Anya O

Need help with substance abuse or mental health issues? In the U.S., call 800-662-HELP (4357) for the SAMHSA National Helpline.

This is the first story of Anya O. Please look for more to follow her ongoing journey.