Friday, January 5, 2018
So now that 2017 is in the books, there is a lot of talk about 2018 New Year resolutions. At the end of 2015, after struggling with Pericarditis, my resolution for 2016 was that I wanted it to be the year of my “reboot”, the year of a better and healthier me. That kindof went well until July when I crashed mountain biking, hit my head, suffered a concussion and the rest of 2016 was one of the worse and most difficult periods of my life living with Post-Concussion Syndrome. For 2017, I had simple aspirations. And I also stopped calling them “resolutions”, using the term “intentions” instead. For some reason, intentions seems more like it isn’t just me, but rather me working with the universe, trusting that it will give me what I need. For 2017, my intention was simply to not mess myself up again like I did in 2015 and 2016. Even if last year was another tough year for me with the ongoing Post-Concussion Syndrome, I am very thankful for the improvements in my health in the last 12 months and that I did manage to not hurt myself again which would make me believe that I have smartened up and gained at least a bit of wisdom. Or maybe it was just better luck with the universe giving me a much needed break? I’ll go with a certain amount of gained wisdom and a bit of luck. And thank you universe for having my back…
My intentions for 2018 are simply to listen to my body in order to continue to get healthier and to also continue to work on myself emotionally. These intentions will likely be what I strive for the rest of my life actually. I believe that all of our hang-ups, bad habits, addictions and vices are symptoms of underlying emotional trauma. Everyone has them. It’s simply a part of being human. If you don’t think that you do, it’s just that you’re unconscious or unaware. Society doesn’t encourage or nurture the recognition and healing of our wounds. Unhappy people make better consumers. Our psychological wounds are really just unpleasant emotions that we are holding onto, emotions that are stuck. I believe that it is our purpose to explore, work through and release these buried emotions. It is the absolute best gift that we can give ourselves, our families and the world. If everyone did this, it would change the planet. Now I’m not saying that I am better than anyone else because I have been putting in lots of time and energy working through my crap, I am just saying that doing this is the single thing that I have ever done that has had the greatest positive impact on every single aspect of my life. Do you want to stop overeating, you need to find out WHY you are overeating. Do you want to stop drinking too much, you need to find out WHY you are drinking too much. Do you want to stop working too hard, you need to find out WHY you are working so hard. We’re taught to search for peace and connection externally whereas the answer is internal. What are you trying so hard to avoid feeling?
Last fall, my physiotherapist at the UdeM concussion clinic compared Post-Concussion Syndrome with a long-term, seemingly never-ending hangover. I didn’t really get the analogy at that time since I felt more like I was constantly drunk rather than hungover. But the last month, the intermittent hangover-like headaches have surfaced and that ironically made me quite happy. I felt happy because changing symptoms usually means pealing another layer of the healing onion and also because it is still easier for me to focus with this headache rather than being overwhelmed by the spaced-out, disconnected, lost in fog feeling that I had been feeling for so long. In this case, for me, the hangover is indeed much better than the buzz.
I am very encouraged to be having more and more good days, intermittent periods of feeling normal again, like my old self. But it scares me at the same time, because I can’t be (or chose not to be) the same. Our brains are different from our other organs. They can heal, but they can only take so much trauma. I’ve read an article where they used the analogy of the brain as a tin can. Once dented, the dent can be fixed by popping the aluminum back out bringing the can back to its original shape and condition, but each and every time that you do this the can becomes more susceptible to further dents until eventually the can simply becomes permanently damaged. Looking back, knowing what I now know about concussions, I certainly have suffered a few growing up, never anything as debilitating as this last one and I certainly don’t want to live through another one to see if it will be even worse. I mean, I will live my life, but I never want to forget what I went through this past year and a half and will do every single thing that I can to protect myself from another one by being vigilant, as mindful as possible and never forgetting.
When I was young, I remember wondering if my friends saw the world the same way that I did. Was my green the same as their green? How about their red and blue? Did we see colors and shapes differently? There was no way to know but I thought it would be so very cool to see the world through someone else’s eyes and brain. As I got older and began better understanding how the human body worked and looking at our differences, I began to understand that our experiences of the physical world are certainly unique. But for the most part, we just unconsciously assume that everyone experiences the world like we do. Living with Post-Concussion Syndrome is similar in that it’s very subtle, invisible and everyone just assumes that you’re fine because on the outside you look fine. I get upset when someone tells me that I’m fine now. Don’t make that assumption. That’s not for anyone else to decide but me. #mybrainmyrules. Type 1 Diabetes is very similar in that it is an invisible disease. Even if Type 1 gamers seem fine, it doesn’t mean that they are.
I’ve become a bit of a hermit. Even if watching TV is usually OK for my brain now, especially non-action programming consisting mostly of dialogue, I don’t watch it as much as I used to. I’ve become disinterested in sports in general to be honest. Maybe that will change with the winter Olympics next month? And I still can’t really watch contact sports without cringing every time a player gets slammed. We really need to stop obsessing about the big hits, fights and violence in sports. It’s sad that society gets off watching humans hurting each other like that. Even if they do get up and seem fine (and look so very “tough” in the process) after receiving a blow to the head, we’re starting to realize that damage is being done and that there are long term consequences to this. Chronic traumatic encephalopathy (CTE) is widespread in many contact sports. CTE has been diagnosed in a staggering amount of retired professional football players and even in players who have only played at the high school level. These former star athletes don’t seem so tough anymore when they shoot themselves in the head or even worse, become the next mass murderer before turning the gun on themselves. Only then will we ask ourselves what went wrong. Maybe when your brain is reduced to mush it’s bound to have horrific consequences?
Growing up in Canada, I played hockey. I can’t say that I ever really loved the game. Playing wasn’t really a choice unless you couldn’t afford it. It’s just what every boy did in the winter and every father’s dream. I loved the feeling of skating but always hated the physical aspect of the game, the intimidation, the cheap shots. Playing bantam house league, I checked the star player in the opposing team and he didn’t get up. Even if it was a clean check, he twisted his knee when he hit the boards. My coach and parents were so proud of me. When you stop and think about it, that is quite messed up. It would have been illegal (assault) to do that outside of the ice rink, but glorified and encouraged in the game. And now, with modern equipment, players feel much more invincible and don't feel as much when they're dishing out punishment so they can hit that much harder. The helmet only protects the skull, it doesn’t protect the brain. And unless you've suffered a bad one with lasting effects it is impossible to understand how bad a concussion can be. It affects every single aspect of your life. Everything. There is nothing you can do without using your brain, not even fall and stay asleep. It's completely different from a sprain or breaking a bone. The ER will send you home if your brain isn’t bleeding or swelling, but it doesn’t mean that you’re going to necessarily feel fine in a few days like they tell you. Traumatic Brain Injury (TBI) recovery takes from a few days to forever. Maybe things will never change and contact sports will continue to be popular but I'm not sure that we're doing as much as we should to protect our athletes, especially young players. A teenager surely doesn't have enough knowledge and wisdom to truly understand the risks and possible long term effects of getting his brain scrambled on a regular basis. We created all contact sports along with the associated attention and hype that we have given them. We made our beds and now we get to sleep in them. I wouldn’t bet on it but I sure hope that we wake up sooner than later.
I believe intentions to be so very powerful. About 4-5 years ago, I was drawn to minimalism, simplifying my life, slowing down, enjoying the little things more, mindfulness, meditation… I loved reading about it all and really felt that it resonated with me. But for some reason I couldn’t put it all into practice. I still felt like I was racing through my life and that all of this sound advice was really more like fiction for me even if in my heart I knew it to be truth. Then I hit my head and suffered persistent physical PCS (Post-Concussion Syndrome) symptoms that literally forced me slow down, simplify, be more mindful, do more yoga and meditate. I sent the intention out to the universe and it responded by creating life circumstances that gave me what I asked for. Crazy and so very simple at the same time. Be careful what you wish for I guess, but at the same time I feel very grateful for all the good that I have in my life right now.
Today, January 5th, 2018 is exactly 1 and a half years since my concussion… I have come such a long way since then. Here’s to more healing in 2018. Cheers !
Wednesday, November 1, 2017
He’s like a commentator for this game that is my life. The only time that he really shuts up is when I’m in a state of deep sleep, but if I happen to wake up in the middle of the night, he seems to instantly want to make up for the chatter break with what seems like so much more babble that instantly kills the peace and quiet. He’s quite persistent and can be a real asshole at times. Other times I don’t really notice him as much. He tends to freak out when I sit in silence at the beginning of yoga or if I try to meditate. He calms down and tends to make more sense when I’m on a solo bike ride. He can be very hypercritical but then he can also occasionally come up with the most insightful advice and ideas. This narrator is actually the one coming up with these words right now. I am just typing them.
This narrator acts like he is an expert in regards to everything including my concussion recovery. He constantly makes timelines of how and at what pace I should be recovering. Riding on the riverfront trail on Thanksgiving weekend, I was not feeling 100%. My focus was off. I felt spacy, ungrounded, clumsy and dizzy. These physical post-concussion syndrome (PCS) symptoms have been coming and going lately. On that day, while I was rushing to take full advantage of the nice weekend, they were ever present. I decided to still go for a ride, but the narrator in my head was babbling on about how unfair it was that I wasn’t feeling better by now. I felt this dark cloud following me. I felt depressed. Towards the end of the ride, I came across a man in an electric wheelchair. It was the universe’s way of reminding me that I had so much to be thankful for even if I was suffering with the minor inconvenience of feeling off at that moment. I understood and knew this to be true in my heart, but the narrator in my head was still telling me that this whole thing was so very unfair and that I deserved to feel better. Why is he such an asshole at times?
With this beautiful fall weather, one of the highlights of my week is a long solo coffee shop ride usually on Sundays. For some reason, I can’t set a ride time beforehand. I need to sleep in until I feel fully rested, eat breakfast, get ready and simply go when I’m ready. That usually ends up being around 11 am, but I can’t really commit to being on my bike for 11 the night before because for some reason I will feel stressed and won’t be able to sleep. In order to feel my best, I also need to not have to drive to a ride. Driving used to be somewhat OK, but now it often brings on PCS symptoms when I venture out on open roads outside of the city. Riding with others or any type of social interaction before or during my ride could also throw things off. I could probably have ridden one of the shorter Elgin mountain bike distances, but the drive to Elgin and all of the social interaction before, during and after the race would likely have thrown me off and caused symptoms, so I didn’t participate. It sounds stupid, but that’s how it is.
I also still have lots of problems with darkness. I notice it when I go down to the basement in the evening. My brain can’t seem to process the quick change from light to dark. Night riding with lights can maybe be OK if I’m by myself and around the city with lots of street lighting, but could potentially be overwhelming with a group which is why I haven’t participated in any of the club cyclocross night rides this year. Sorry guys. I wish I could. Driving at night is also a bitch. It’s not so bad in the city for shorter distances, but coming back from my parents’ house, that live out in the country, on Thanksgivings, I wasn’t feeling so good even if it’s only a 30 minute drive. And when I push through it, I quickly become quite exhausted and pay for it the next few days.
A few weeks ago was our 2nd annual ATV outing with Adele, my dad, nephew and brother-in-law. It was a 30+ minute drive to get there and we were meeting at 11; two things that I don’t really deal with that well right now. As soon as we started out on the ATVs, I could feel the physical symptoms creep up and the narrator in my head started going ballistic. The symptoms are somewhat subtle, kindof like a spaced-out, disconnected, head-spinning buzz, but it’s the feeling of losing control that makes the experience so very devastating and traumatic. I don’t think that the feeling can be precisely described with words and unless you have felt it you have no idea. It’s like trying to explain to a young person how it feels to be old. It cannot be explained, it must be experienced in order to be understood. Another analogy that comes to mind is that I don’t feel my heart beating, my lungs breathing and my digestive system digesting most of the time. They just happen effortlessly on their own while I’m busy doing other stuff. Our brain is the same. It does so much automatically and effortlessly that we don’t realize until it doesn’t anymore. The symptoms eventually subsided after a while and we ended up with a 48 km ATV exploration ride. I paid for it dearly the next day though. I felt like I had been run over by a pickup truck when I woke up the next morning. The narrator in my head had some really nice things to say about that…
I have been doing Yoga Nidra once a month for over a year now. Yoga Nidra is basically a guided meditation which brings you to a state of consciousness between wakefulness and sleep. At first, I used to always nod off into sleep, but a few times I really felt like I was surfing the waves between the two states. And during this time, the narrator in my head was still talking to me, but he was making so much sense. My creativity was soaring and the useful, peaceful thoughts just flowed effortlessly. The thing is that the narrator that I speak of isn’t real. He’s just an illusion of my mind, the messenger, and the information that he communicates comes from either my ego or my heart. For brief periods during Yoga Nidra I feel that I am indeed connected to my heart, not the physical organ but my true self, my intuition. And when we experience such connection everything just makes so much sense.
With me, I know that the lesson that the universe wants me to learn is about control. We are sold the idea that we can control our destiny through positive thinking, hard work, never giving up, mind over matter, but at the end of the day there is no such thing as being in control. Life isn’t “in control”. It’s all an illusion, a lie that we’ve been told. To be human and to live life fully is to realize that we are not in control. It’s more a matter of listening to our instincts and trusting the process of life. Our actions create our reality and are the only thing that we can control.
15 years ago today, Adele’s life was saved when she received her very first insulin injection. I still remember it vividly like it was yesterday. She didn’t do anything to cause her Type 1 Diabetes. It wasn’t because she ate too much sugar. It wasn’t because she didn’t exercise enough. And it certainly wasn’t something that we wanted. It was completely out of our control.
Type 1 gaming is the ultimate lesson in relinquishing control. Even after 15 years of playing this Type 1 game, Adele’s blood sugars are still not controlled all of the time like those of a non-diabetic. Her blood sugar is still out of range regularly because that’s how the Type 1 game works. Even after 15 years of playing this Type 1 game, we still really have no idea what we’re doing. I mean we know the basic rules that insulin lowers blood sugar and that Adele needs a steady dose of it continuously to maintain life, but other than that, all that we can control are to keep up with all of the physical tasks required to keep her alive.
Surrendering control, it is so very simple, but at the same time the most scary and difficult thing to do. But wait, maybe that’s just the narrator in my head talking?
Thursday, September 28, 2017
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.