12 years

Today, April 23rd 2020 marks my 12 year diagnosis anniversary for Granulomatosis with Polyangiitis. Every year this date rolls around I'm filled with a mix of emotions. To start, I'm certainly glad to still be here. Despite life being hamstrung by the COVID-19 crisis right now, it's pretty great to be alive 12 years into this battle. I don't know that the war will be won during my lifetime, but I'll continue to fight and chase like it's possible.

You'd think that celebrating 12 years would make me happy, but it also makes me sad. It makes me sad because this disease has claimed the lives of so many people and wrecked the lives of so many more. While treatments are certainly getting better, we are still not much closer to a cure. When I think about all the people that have lost this battle, I wonder why me? Why am I still alive, when so many have lost? 12 years in I know that it's just the luck of the draw. You get lucky to have the right doctors. You get lucky that your body responds to the treatments. Yes having the right attitude makes a difference, but it can only make up so much.

It's sorta weird that we celebrate the day we were diagnosed because on April 23rd 2008, I was about 7 months into a very long battle with a nameless invisible enemy that just so happened to be my own white cells. I don't remember the exact day things started to go off the rails, but by the time I was diagnosed in April I was just relieved to have a name to fight. I still remember going home after that late evening phone call from my doctors (Dr. Alleyne and Dr. Abrams) and googling Wegener's Granulomatosis (the disease name at the time) and reading an outdated statistic. It scared the shit out of me. At that time there wasn't webmd and mayo clinic sites that came up first. The wikipedia page came up, and as every good google researcher does, we click on the first link that pops up. About 3 or 4 sentences in I read that as of the late 1980s and early 1990s GPA had a 90% death rate one year after diagnosis. Now my rational brain could read that the statistic was clearly about 15-20 years outdated at that point, but the next sentence didn't provide me with an updated statistic for me to latch onto, so that stat just festered. I didn't make it much farther into the intro paragraph before slamming my laptop shut and going on about me evening. Doing my best to forget what I had just read. No matter how hard I've tried to forget that statistic over the last 12 years, that number still resonates in my brain when I think about those early days and months. Those next several months have become a blur to me. But there are a few moments that stand out.

Fat BHudg, cue the Rocky theme
In May of 2008 I ended up in the hospital at the Medical University of South Carolina (3 hours from my home where the closest doctor with any experience) for a week with kidney failure. I was in a lot of pain and in serious danger of losing my kidneys or ending up on dialysis. I was getting pumped full of steroids and being poked and prodded every few hours. With no wifi, tablet, or smartphone I was forced to watch the tiny TV in my room. The newest Rocky movie had just come out and was on the movie channel. I loved all of them and watched them every time they were on TV as a kid. In the new one, Rocky is older, running a restaurant and finds himself in an argument with his son. During this argument with his punk son Rocky delivers this line, "The world ain't all sunshine and rainbows. It's very mean and nasty place. And I don't care how tough you are, it will beat you to your knees and keep you there permanently, if you let it. You, me, or nobody will hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward. How much can you take and keep moving forward. That's how winning is done."

My life was no stranger to adversity. I had already seen my fair share by age 21. But something about that quote, as cliche and obvious as it is, has buried itself in my subconscious for the last 12 years. If there is ever a Disney movie made of my story (doubtful cause it'd have to be rated R at least), that scene would undoubtedly be the moment things click and the training montage starts. Life after that hospital stay wasn't simple and linear as a movie training montage would make it out, but I'm sure Hollywood would take some creative licensing. And chances are even if I hadn't seen that movie clip when I was at my weakest, I'd still have chosen to fight, but it's nice to have that quote and moment of reflection from a very dark week in my life. I've actually avoided watching that movie since that day. Watching the youtube clip above is only the second time I've ever seen it. I only looked it up to make sure I didn't butcher the quote. Maybe it's still too painful. Or maybe I'm just too nostalgic. But as I write this I can still remember watching that movie almost above myself (that could've just been all the morphine) and feeling that quote hit me in the chest.

Life over the next 12 years was certainly a lot different than I could ever imagine from that hospital bed. I've gotten the chance to chase some of my dreams, but they've not looked a damn thing like I ever could've drawn up. I was naive in those early years. You'd think a brush with death would provide some perspective, but it really only embolden me. I lived life in the fast lane for the next 8 years. White knuckling my way back to health and fitness. Gritting my teeth and pushing through 2 ugly relapses. Shoving depression, anxiety, and a close brush with suicide to the back burner. Afraid to slow down for fear that I'd miss the chance to reach my goals. If I'm honest with myself I was moving my feet as fast as I possibly could fearful that life might end before I lived enough. At times over the last 12 years I didn't know if I'd make it to the next year. Sometimes I honestly didn't care if I would make it. I was living life my way and to hell with everyone else. Too many of my dreams had been ripped from my fingers and I'd be damned if I was going to let anyone tell me to slow down. But 2017 saw me hit a wall. I was living at a pace that wasn't sustainable. If another bout with my GPA wasn't gonna kill me, it'd have certainly have been my recklessness.

2016 Olympic Trials

With age comes perspective. I've finally slowed down and learned how to enjoy life a little more. My dreams are no longer a burden but a privilege. I've learned to listen when loved ones express concern. With a lot of help and work, I've managed to carve out a life that I enjoy most days. I'm still as driven as ever. I still have days where I feel the darkness creep in and try to grip me and drag me under, but now I have the skills to make sure it doesn't pull me under for long. Until there is a cure and we can win this war, I'll live with that constant fear of every sniffle or runny nose. But I know now I'm not the only one. I'm part of an amazing community of people that share this disease and this struggle. The inspiration I hear on a weekly basis gives me tremendous courage for the future.

So cheers to another trip around the sun! 
Still Chasing, Still Inspiring
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  1. Love hearing your story. I'm a runner too and was diagnosed in Feb 2019 at the age of 62. The first thing my doc said is that you're gonna be ok. I know you'll go home and Google this, but don't believe everything you'll read. Like you, I did read it and say WTF. However, I did have faith in my doc and just over a year into treatment I feel so much better. As runners we know to never give up. That has been good training. Keep it going. Your story motivates me.

  2. Thanks for your story. I was also diagnosed with vasculitis 3 years ago. I'm a a woman in my early 30s, so it took all my plans away. Since then I'm, like you, trying to squeeze as much as I can in this time I have left. That it could be 1 year, 5 years, maybe 50...who knows... I feel that mostly, we've been diagnosed with uncertainty, and that's by far worse . Your story gives me hope. That maybe I'm here for the long run :)


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