Estimates range from 5 to 30% of concussion sufferers will develop PCS and even if there are certain risk factors, they can’t really explain why certain people develop PCS and others don’t. Now I am not a doctor, but looking back I can clearly see why my brain is taking so long to heal. The last 15+ years have been the gradual making of a PCS perfect storm…
May 3rd, 2000 was the best day of my life. Our daughter Adele came into this world and we were ecstatic. But at 7 weeks, she developed a kidney infection after which they discovered that one of her ureters (tube connecting her kidney to her bladder) was malfunctioning causing a backflow of urine which lead to the infection. She needed surgery to correct the problem, but they couldn’t do it since she was so young, so we needed to postpone it for another 8 months. To prevent future infections during the wait, she was prescribed a daily dose of anti-biotics. Looking back now, this surely wreaked havoc on her gut flora which we now know is one of the likely causes of auto-immune disease. Just before her 2nd birthday, after being sick for months, Adele was diagnosed with her first auto-immune disease, Celiac. We hadn’t yet really figured out how to cut gluten from her diet when she was diagnosed with her second auto-immune disease, Type 1 Diabetes a few months later in October 2002. Then a few years after that came the third auto-immune diagnostic, Hashimoto disease, which affects the thyroid gland, the treatment being life-long thyroid hormone replacement therapy in pill form. And this was all in less than 5 years.
To say this was a difficult time would be an understatement. I felt like the boxer who falls to his knees after getting smashed with a left hook and as soon as he stands up, still very wobbly, gets hammered again and then again; a three punch TKO. But if you looked at me or chatted with me, you wouldn’t have known. I was never really good with being in touch with my emotions at that point in my life so I just put on a brave face and took care of business. Just like Nike told me: “Just do it”. I told myself that I was stronger than all this shit. The thing was that at that time, my definition of what being “strong” meant was incorrect. I just thought being “strong” meant to be able to stiffen my upper lip, to take it like a “real man” without flinching. As a father, my reaction was that I needed to fix this. I needed to save and protect my baby girl. The most stressful disease on our auto-immune menu was by far the Type 1 Diabetes management. A person with Celiac disease can’t overdose if they mistakenly ingest Gluten and you would really have to screw up with Synthroid (thyroid medication) for it to be lethal, but the insulin required for maintaining life of a Type 1 is so powerful that even a single drop too much can have devastating, even a lethal effect, especially for a 2 year old baby. With the Type 1 Diabetes management, we were deciding the insulin dosage. We calculated based on a prescribed formula, but we were still deciding how much insulin Adele was getting in each injection every time she ate. Because of this, I became hyper-vigilant with Adele’s care. I didn’t really sleep anymore. We got up at least once every night to make sure her blood sugar was in a safe range and I obsessed 24-7 over insulin doses and what and when she ate. I really thought that I could do a perfect job as her pseudo-pancreas. I was determined that I could fix this if I just tried hard enough. In my mind I was at war with the Type 1 game beast and just wasn’t going to back down.
All of this kept me real busy which was good because I really didn’t want to feel the pain and devastation of having my baby be so sick and have to go through all of this. I thought that if I just remained positive that I could beat it. And by positive I mean blocking out every single negative emotion and thought. To make sure that I remained as numb as possible, I rode and raced my bike more and more. Now some of you will think that this approach is a healthy way to burn off some steam and it was to a certain extent at the time. The problem is that it is but a short-term solution. This technique does not work long-term which I have since proven in the last few years. Stress releases cortisol (this is our fight or flight response) which gives you an incredible boost of energy and clarity. It is so powerful that it can make a mother lift a car to save her trapped child. Yes, it is THAT powerful, but like other potent drugs it must be used cautiously. I abused it every minute of every day. The regular exercise temporarily released the built up pain and tension but it was kindof like taking medication that causes ulcers to alleviate the pain of your current ulcers. Pouring stress over stress was really just throwing gas on the fire. Looking back I can now see that there was absolutely no way that this was going to end well.
As I rode and raced more, my results improved. And for me each race was almost like a matter of life or death. I was racing against Type 1 Diabetes. And because of this, getting results made me feel like I was making progress in my quest to fix stuff, to beat and kick Type 1’s ass. Getting results made me “happy”. Knowing what I know now, happy isn’t the correct word to use here. Winning a bike race gave me a temporary high that masked the Type 1 gaming pain and suffering. And because these external accolades were temporary, they created a never-ending cycle where I just wanted to pursue them with the same intensity as a drug addict looking for his next hit.
This intensity seeped into every single thing that I did. The steady flow of stress hormones made me very efficient at checking things off my check list. My boss appreciated my ability to get things done at work. Looking back, I now realize that Cyclebetes was really born from this push. The nurses and doctors at the Diabetes clinic loved us and gave us constant praise because we were doing such a good job. I started to feel like I could do it all. I felt invincible. It’s so easy to get caught up in this since society keeps giving you praise because you are hitting bullseyes, getting shit done. Society glorifies the high achievers. It just loves to build them up as heroes. But in reality, I was in no way a hero; I was really just a fool unconsciously killing myself trying to win a race that cannot be won by pushing harder or going faster.
All this time, my body was talking to me. I would often feel very tired. I couldn’t push myself as I once could in training. I just thought that I needed a little break after which I would feel a better for a bit and fall deeper into the hole that I was digging. I was exhausted, frustrated, depressed and showing so many signs of adrenal burnout. But I still didn’t listen to what my body was telling me. In 2015, my body spoke louder when I was diagnosed with Pericarditis. I remember doing a 5 hour road ride in March and suffering like I had never suffered before a few weeks before the diagnosis. I thought that I just needed to train harder to get out of my funk. Instead I was awoken with chest pains not sure if what I was experiencing was a heart attack. I slowed down, but still not enough.
I was in way over my head, but still very clueless in so many ways to what life was trying to teach me. After recovering from the Pericarditis, I tried racing again. I told myself that it was just for fun now, but the old thought patterns kicked in again and before I could readjust and regain my balance, I hit a root on a downhill mountain bike trail which sent me flying through the air. Airborne, I remember thinking that I really fucked up this time just before hearing and feeling the crash of landing on my head. My crash, concussion and PCS are in no way random occurrences. They are the climactic perfect storm after many years of not paying enough attention.
I am not writing my story for your pity. I am writing my story because it helps me understand. I am writing my story because the more that I understand, the more it helps me heal. And I am sharing my story in case it can also help someone else. As humans, we are constantly seeking connection. In this sense, hopefully you can in some way connect to my written words.
I am now beginning to understand that running away from our problems is actually very cowardly. Sitting down face-to-face with your shit requires so much more bravery and is what being strong really means. Running away from our problems or numbing ourselves will never solve or fix anything because it is based out of fear. As humans, our first reaction is to run away from what we’re afraid of. To let go of this fear through acceptance is the only way to grow and heal. And what we’re left with after releasing fear is the only thing that is real. We are left with love.