Listening to the voices

There is this non-stop narrator in my head constantly commenting and analyzing the information captured by my senses.  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 2^nd 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?

A perfect storm

Google tells me that post-concussion syndrome (PCS) is when concussion symptoms last longer than one or two months post-injury.  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 3^rd, 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 2^nd 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.

Shiny on the outside

Social media is an extension of our ego where we get to create a fake image of who we want to appear to be in real life.  It’s not all bad, but it can be.  I posted the above photo on Instagram as part of Giant Bicycles Canada’s #MyTcx promotional tour.  I look quite happy, healthy and like a bike racer in the pic which is why I posted it.  My friend Don Ricker at Skylight Photo always does an amazing job behind the lens.  But the thing is that it isn’t real.  I’m just faking it.  I ain’t even close to being a bike racer right now.

Over 14 months after my concussion, I am having more and more good days, but then I get carried away, try to do too much and my head reminds me that it always decides now.  Last Sunday, I rode one lap of the cyclocross course at the Mike’s Bike Shop CX race in Dieppe and instantly knew there is no way that I could have raced.  My PTSD (Post-Traumatic Stress) made me feel quite terrified on the course even if a few years ago I would have loved the off-camber descents and other technical aspects.  The semi-slick gravel tires that I had on my bike didn’t help but I still felt like I still cannot focus enough to race. The crowd and pre-race commotion also tired me out.  I am not saying this just because I wouldn’t have gotten a good result.  I literally would have been in the way.  Looking back, I can see lots of progress, but I also know that I still have a long way to go.  To be honest, when I first got to the park I really wished that I was racing as I checked out the beautiful course that was laid out and riders pre-riding.  I missed the focus and clarity experienced during and after a race, the way that everything becomes clear and you feel so very alive.  I missed the fans heckling.  I missed railing a grass turn.  I missed feeling like I was at home.  That feeling quickly changed about 10 minutes into the race when I saw everyone’s pain face.  It didn’t seem as much fun then even if I used to really love the suffering.  I can’t really say if I will ever race again or not.  I have however promised myself that it will only be when I am 100% symptom free and after having worked through many issues that have come up since the injury.  Most days, I project the outside image that I am there already, but inside I know for sure that I am not.  For now, I must simply be here now.  I have developed so much body awareness since the injury that I can really feel every little slight nuisance and minimal symptom now.  They are constant reminders that I still, and will forever, carry my concussion with me.  This heightened awareness protects me and I am committed to listening to what it is telling me.  My body now has my full attention.  

A few years ago I would have certainly judged someone like me, who really seems fine, rides the course all decked out in his cycling kit, but still refuses to race.  I don’t think that I will ever judge someone else that way now or in the future.  Like playing the Type 1 game, we never know how much someone can be suffering just by looking at their outside.  One of the worse things about Type 1 gaming and living with Post-Concussion Syndrome is that both are completely invisible.  The majority of the struggle is happening behind closed doors in the background when nobody is looking.  It’s such a lonely form of pain and suffering.

I have slowly been riding more and more on the mountain bike and on the road.  My legs and cardio have absolutely nothing to say in how long and fast I can ride.  They could always go harder but it is now always my head that decides.  I remember attempting to do a specific road loop on Father’s Day, but ended up turning around before getting too far because my head was telling me that it wasn’t up to it that day.  It isn’t always easy to be honest with myself in situations like these but I have promised myself that I would.  During my vacation a month later, I was very happy to be able to finally finish that Father’s day ride.  General fatigue and ongoing stress seem to affect me the most right now.  The Cyclebetes hangover last week was quite intense.  I have a much harder time dealing with stress and it really, really takes so much out of me when I do.  Exhaustion and panic attacks are how I react to high stress right now.

Most days I feel like I will never ever be the same even if the neurologist that I saw last winter said that I eventually will.  He just couldn’t tell me how long it would take.  It’s like my body has developed these new safety features that protect me.  Our bodies are much wiser than our minds.  They instinctively know exactly what we need to thrive and survive.  The problem is that all too often we don’t slow down or stop long enough to listen.  I believe that pretty much all injuries and illnesses are a result of not paying attention to or being disconnected from our body’s wisdom.  If we ignore the initial whispers, they become louder and louder screams that eventually force us to a sudden halt.  Our bodies are experts at maintaining health if we work with it.  When we don’t, we make ourselves sick and unwell.

Injuries and illnesses are so humbling.  Until they happen, they really only happen to other people.  I’m not sure if it is simple luck or that I had been pretty good at listening to my gut instincts, but this is the first time that I have suffered a “severe” injury; plenty of scrapes, strains and bruises but nothing that lingered longer than a few weeks.  Up to this point I have done lots of epic and somewhat dangerous shit and still managed to save my ass for close to 48 years.   And that may be why I am finding dealing with this to be so very difficult?  As humans, we tend to take for granted everything that we find easy, that doesn’t require effort.  Maybe injuries and illnesses exist as reminders?  And if we’re lucky, we get to recover from them and hopefully learn the lesson that is being taught.  In many ways, that is how I feel; very grateful and blessed to have been given a second chance.  And in this sense, I hope that I never will be the same.  Maybe never being the same again isn’t a bad thing?  Wisdom is so very, very expensive.  I’ve seen the #slowlife hashtag used in social media in regards to TBI (traumatic brain injury) recovery and it really does describe how such an injury affects you.  I can’t do anything fast right now.  Maybe the whole purpose is to learn how to slow down.  We do miss so many of the precious fine details when we’re moving at race pace.

10 years’ worth of THANK YOUs

Photo by Don Ricker at Skylight Photo

 I believe that our purpose here in this life is to figure what gifts that you have to offer the human species and the universe and then use them to spread love.  It doesn’t have to be something big.  Often the little things are those that count the most.  If everyone did their small part to support each other imagine how better the world could be.  Start at home with your family and from there, if you can, spread love even further.  That love will flourish and grow.  It’s never about what we are owed but what we can contribute.  It’s about making the universe a better place because of your time spent here.  The only sure thing is that one day we are all going to die.  Will your life have made a difference?

When Adele was diagnosed at 2 years old, almost 15 years ago, I remember dreaming of one day organizing some type of fundraising event that involved bikes.  In 2007, our cycling club received an email from a group that called themselves H2V (Halifax to Vancouver) asking for help on the road while they biked relay style across Canada to raise money for JDRF.  I instantly knew that I would join them.  That initial thought became 22 local riders a few weeks later riding with them from Moncton to Fredericton into the night and the craziest ride that I have ever done.  During the ride, one of my friends turned towards me and said: “We should do this every year!”.  The seed had been planted and Cyclebetes was born.

Photo by Don Ricker at Skylight Photo

10 years is a long time.  10 consecutive years for any event is very unlikely.  There always seems to be a reason or something that happens that prevents the event from taking place one year and then the momentum is halted and too often the event just dies.  I now know that for me the intention of organizing such an event was mostly out of panic and fear.  The thought of Adele suffering long term complications was so terrifying for me that my utter distress was what was pushing me to do everything I physically could for a cure before long-term complications set in.  This was good for a while, but it really is a form of running away by keeping busy and because of this eventually exhaustion sets in and you eventually need to stop and feel the feelings associated to the trauma to accept them.  Our event survived because when I reached that point it wasn’t MY event anymore.  My friends really took it over and I just became a small part of the reason why it kept on thriving.  The cause is always mine, but the event now belongs to the Mike’s Bike Shop cycling club.  I feel so very, very blessed to have such good friends.  Thank you Rick Snyder, Pablo Vergara, Luc Belliveau and Gilles Gallant for really making this event so awesome these last few years.  You guys have no idea how at times I just wanted to throw in the towel, but your enthusiasm and energy kept me going.  Thanks guys.

Photo by Don Ricker at Skylight Photo

Over $200,000 raised in the last 10 years is something to be proud of even if it is a very small portion of JDRF’s total budget.  The ride is actually even more than just raising funds for research.  It is a celebration of riding bikes that also raises much needed Type 1 Diabetes awareness.  It also inspires while reminding us that for Type 1 gamers, the trials and tribulations don’t end with the ride.  They are there 24/7, 365 days per year with no vacations whatsoever and that’s why Type 1 Diabetes needs to be talked about and taken seriously.  Insulin is not a cure.  Insulin does not prevent long term complications.  Insulin is but life-support.

At times, we racked our brains trying to find ways to grow our event numbers.  We were one of the first, if not the first, cycling charity event in our area, but now we’re competing with many more, all for very worthwhile and important causes.  But then we decided to concentrate on quality rather than quantity to measure our success.  Our event is more like a locally owned small business, less like Costco.  Our event is more like attending a family reunion, less like being at a stadium concert.  And I am really proud of that.  Our event really comes from and connects with the soul.

Photo by Don Ricker at Skylight Photo

I didn’t ride during our event because the day has really become quite hectic.  I drove my truck as one of the support vehicles.  I had ridden the 75k route a week before.  At times I missed riding, but I also very much enjoyed seeing riders enjoy the day pushing their own boundaries on the bike.  This made me feel inspired.  Thank you.

Photo by Don Ricker at Skylight Photo

Thank you to our main sponsor, Mike’s Bike Shop without which this ride could not exist.  Thank you Rick Snyder for your undying support all of these years.  Your kindness and generosity continue to amaze me.  I really appreciate all that you do for the cycling community and JDRF.  Thank you.

Thank you Luc Belliveau and Pablo Vergara, key players in this event.  Thank you for all of the incredible work that you do year after year.  Thank you Gilles Gallant, NB and PEI JDRF engagement coordinator.  You always go above and beyond your role with JDRF in helping ensure that our ride is as amazing as it is.  Thank you.

Photo by Don Ricker at Skylight Photo

Thank you Zoe Robichaud, our JDRF kids ambassador for your speech to the riders before the afternoon loop.  You really put a sweet and innocent face to Type 1 Diabetes and showed us why everyone was riding.  Thank you.

Thank you all that rode and fundraised.  We really appreciate your support and hope that you enjoyed the ride and our event.  Thank you.

Thank you to all of our sponsors:  Sobey’s in Dieppe, MacDonald Buick GMC, Giant bikes / Guy Pellerin of Pellerin Sports, City of Dieppe, Molson brewery, Cape Bald Packers, Terry Tomlin of Tomlin Sports Marketing, Starbucks, Kevin Noiles of Lambert, Pat Bolduc of Big Ring Sports, Nomad Supply Co., Dieppe IGA / Coop, Adrien Lesvesque at Falstaff Media, Long and McQuade, Brigitte Dionne of Cyclechicks, Chris Mitton and Jim Currie.  Thank you.

Thank you to all of our other dedicated volunteers:  Jeff Currie, Bill Goobie, Martin Pelletier, Melissa Bordage, Christian Charette, Don Ricker, Michelle Chase, Charles Cormier, Diane Duguay, Janice Evers, Gerry Allain, Elmer Wade, Christian Jasper, Erica Griffith, Steve Kikkert, Serge Noel, Jennifer Boyd, Cindy Guitard, Jeremy Leger, Vanessa Ferguson, Rhonda Currie, Sarah Quintin, Brigitte Dionne and Michele LeBlanc.  Thank you.

Photo by Don Ricker at Skylight Photo

If I have forgotten anyone, I apologize and want to thank you as well. I hope to see you again next year at the 11^th anniversary Mike’s Bike Shop Cyclebetes ride !

All online fundraising pages will still work until the end of the year so you can still donate here...  2017 Mike’s Bike Shop Cyclebetes Ride to Cure Type 1 Diabetes.