Tuesday, May 23, 2017

In the end maybe there is no end

I have been thinking much more about death lately. Before anyone starts freaking out, to be clear, I am NOT suicidal. I am just being honest…

Even if death is as natural as birth, in the western world, we are so uncomfortable with it that it has pretty much become a taboo subject. Just mentioning it when talking to someone will almost always make them feel noticeably uncomfortable and result in a reply like “Don’t talk like that” or “Let’s change the subject”. Talk about it too much and don’t be surprised if your friends and family suddenly organize an intervention thinking that you are suicidal (the reason for the 2nd sentence in this post). Death is the only thing that is a 100% sure thing for every single living being on this earth and as humans we mostly live like we are never going to die.

Sitting alone on the snow in the middle of the woods this past January while out fat biking, I felt like shit and so very disconnected. I felt like this whole post-concussion syndrome thing was just never going to get better and I suddenly had a new found understanding of why someone could give up on life. The thought of just walking off the trail into the woods and ending the suffering just came. In many ways it would have been so easy. If most everyone was completely honest and in touch with how they truly feel, I’m sure that most if not all have had such thoughts at one time or another. It was never something that I had the urge to act upon, but the thought did come.

I read that humans are the only animals capable of conceptualizing their own death. As a new dog owner I look at our dog Zen and can’t help but notice even more how ridiculously happy he is constantly living in the present moment completely oblivious to the fact that his time here is limited. In this sense I do agree that ignorance is in fact bliss. Or maybe he does instinctively know that his body won’t last forever and he doesn’t care or dwell on it? Either way, he deals with this truth way better than us humans.

If we’re “lucky” enough to prepare for our own death I believe it to be the ultimate teacher. Just like that it strips away all of the bullshit that our minds have created. You often hear of people experiencing a huge sense of peace and clarity right before passing on. All that’s left is love. Everything that wasn’t ever real disappears just like that. How smart and popular you were in school, how much money you made, how much stuff you had doesn’t matter anymore. The only material thing left in the end is our physical remains in a box or urn. Your rank in society doesn’t matter anymore. The only difference that it makes is in how fancy the box or urn will be. What does remain is the effect that you had on those that you came in contact with during your time here. All that remains is the effect of your love.

During my year-end evaluation at work last month, a thought came to me that whatever my supervisor wrote down based on my work performance was irrelevant. It really didn’t matter. The real evaluation will happen when I die. And my hope is that my friends and family never mention how “hard” I worked during my eulogy, but rather share how I made them feel. I am beginning to understand that living is not so much about achieving anything at all other than meaningful connections with others. I’m beginning to see that it really isn’t all that complicated. Just start with your friends and family and extend it out from there. Choose the only thing that is real in the end. Choose kindness and love.

We begin to die as soon as we are born. In reality, both birth and death are really the same thing. We can’t have one without the other. Death is what makes life so precious knowing that our time here is limited. But it also makes it less serious in that no matter what we do we cannot escape it. It is our fate.  And it is insane to try to fight it.  There is an incredible amount of freedom in realizing and living this truth. I like it here on this earth and don’t want to die, but I’m not afraid of it. The only thing that I fear is the pain and suffering that it will cause to those that I leave behind. But maybe that is just because my life mattered? And there is definitely a sense of peace in that.

A Type 1 Diabetes diagnosis is so much more than the death of pancreatic cells that produce insulin. It is the death of peace of mind. Insulin delays death and I am so very grateful for that. But the loss of peace of mind can be so very expensive. Nothing is certain and under control, and the Type 1 game is a constant reminder of this. Like any other death, it needs to be honored and mourned. The problem is that nobody had ever told me that…

Are you living the way that you would like to die? Are you spreading your love to what matters most? Are you practicing forgiveness? We don’t get to choose how and when we eventually die. But we do get to choose how we live. And how we live is how we die. Think about this for a moment. Ask yourself the question often. You certainly won’t regret it. That I know for sure.

Thursday, May 4, 2017

10 months

May 5th is my 10 months concussion anniversary.  If you had told me the day that I hit my head that I would still be talking about this now I would have thought you were crazy.  What initially seemed like simply “getting my bell rung” has turned into one of the most difficult things that I have ever gone through.

In many ways I would say that I was physically better in August than I am now.  But looking back to last summer the symptoms were there but after not the greatest advice from doctors I was in denial, not in touch with how I felt and thinking that it was all in my head (pun intended).  In many aspects, modern medicine is in the dark when it comes to concussions.

I’m really not sure how to answer when people ask me how I am feeling.  It can change from one minute to the next and I get weird looks when I go into any detail so I mostly just answer “better”.  Most people are just being polite asking and don’t really want to know.  A concussion being an invisible injury, sympathy and understanding don’t always come easy from others.  I don’t blame them.  Before this I am not sure I would have been very sympathetic either.

I am seeing some improvements, but nothing linear.  Even if I check-off a symptom from my list today, it can very well be added again tomorrow or next week.  I never really had any of the common symptoms like headaches, trouble sleeping, noise sensitivity and nausea.  One of my big issues is with my balance that is still off and I feel more uncoordinated than before.  I have a hard time focusing, especially in open areas.  My focus is pretty good in an enclosed area, but everything seems a bit more fuzzy when I’m outside.  It’s like the vastness surrounding me makes everything seem surreal and not 100% clear.  Aside from focus, my biggest issue really is with movement.  Usually walking is OK (speed is low) but sometimes it can make me feel off especially when I am tired.  Slow biking is OK, but I can’t handle riding too fast.  My brain can’t deal with the constant change of scenery.  In a car, because I am enclosed inside the vehicle, it doesn’t cause symptoms as much but it is worse if I drive for too long or after dark.  Oh, and I drive like a paranoid old man now – very, very cautiously and super slow.

I have seen a neurologist in February and he told me that I will make a full recovery, but that he cannot tell me how long it will take.  He also told me that brain injuries are cumulative so that I am more at risk for another concussion and if I were to whack my head again before this one fully heals that it would certainly prolong my recovery and / or worsen my symptoms.  For this reason, I am very, very paranoid of hitting my head again.  It is basically always on my mind and makes me very anxious at times especially when I’m feeling symptoms.

To all my friends who have reached out and invited me to go for a ride with them I really appreciate the offer, but right now it really takes a whole lot of concentration to just ride and I’m worried that adding conversation to the mix too soon could be dangerous.  Again, it really makes me anxious, so I will wait until I feel ready.  Riding on the road also makes me nervous right now.  Cars add a very scary aspect to a riding environment and I always need to feel that I am fully aware of everything around me when riding.  I don’t really feel that right now so I’m staying off the roads for a while longer.  Sorry if I come off as an anti-social snob when I refuse to ride with you.  It’s not about that at all.  It’s about listening to what my body and head need right now and honoring that.

I need at least 8 hours sleep per night.  Without this minimum, I feel my symptoms get worse.  Stress will completely wipe me out.  I just can’t handle it.  Last week, we were losing at the Type 1 game and it certainly wasn’t helping with my concussion recovery.  Type 1 Diabetes and puberty don’t get along very well and in our case has been causing huge and unpredictable variations in blood sugar levels.  For this reason I wasn’t feeling so well last weekend. 

I am still working full-time.  I get tired way more easily now and on most days I can pretty much only handle my day of work.  All that I can do in the evenings on those days is taking the dog for a walk.  I have been doing Yoga once per week and doing a Yoga Nidra Sonic Sound Healing class once per month.  I have done Physiotherapy, Osteopathy, Bowen therapy, Homeopathy and massage.  I have also been seeing a psychologist (3rd one in the past 2 years).  I am seeing progress and on the days where I can be comfortable with the rate of my progression I am good.  Some days I do get impatient though and that usually makes me feel physically worse.  The only thing that I have not tried yet is medication.  No meds exist to accelerate recovery.  They would only help with the symptoms.  So far the only pills that I have been popping are supplements.  Some days I’m not sure if that is a good or a bad thing?

But it’s not all complaining and being negative.  I feel very grateful that I get a second chance.  It could certainly be much worse.  I just need to continue working on a newer, softer, more sustainable version of myself.  Life isn’t meant to be raced through and living slower is something that should be savoured.  When I’m in a good place mentally I can embrace the lack of speed.  But other days my mind tends to get back into its old habits and I feel like I should be doing more.

This past Sunday I was sitting alone on a bench along the riverfront trail when a few people rode by on bikes.  They were just riding at a slow pace enjoying the sunny day.  They looked like “normal” people, not super fit, not obese, just “normal”.  They looked happy.  As they rode away, a thought came up.  Why is it so difficult for me to say goodbye to Mike the bike racer?  Why isn’t “normal” enough?  As these thoughts came, I also noticed a flock of geese flying by and skillfully landing on the lake in front of me.  They carried themselves with such grace.  Their bodies just knew what to do to land safely and float peacefully.  Just like my body knows that my symptoms need to persist for a while longer to keep me safe from myself.  Maybe our wisdom is not in our mind.  Maybe we are not what we think of ourselves to be.  Maybe we are so much more.

Wednesday, December 21, 2016

The stuff that never goes on sale

Most people like free stuff.  We live in a culture that encourages and cultivates the belief that more is better.  One of the problems with this is that nothing is actually free.  I’m not talking about monetary cost here.  This currency is much more valuable than money.  

What if we consider the total time and energy that we have here during our short stint as a physical body on this planet and we create a pie chart graph to represent its distribution?  Let’s call it our life-pie.  A large portion of our life-pie will need to be set aside simply for staying alive.  This section includes the routine necessities such as eating and drinking, gathering food and water, sleeping, shelter or home care and maintenance…   A certain level of formal education is also required by law in Canada so that’s going to take up another portion of the pie.  And what’s left is up for grabs.  

 We spend the rest of our lives, consciously or too often unconsciously deciding how we want to spend the rest.  Our options are technically limitless, but the most popular choices are: parenting, marriage, family, friends, career, travel and sports / hobbies in no particular order.  Again, consciously or too often unconsciously, we then put our choices in order depending on their importance and how much time and energy we want to invest in each.  Some choose to put career first, others family, marriage or parenting.  These choices could be called our loves.  And all of the regrets that we may have lying on our death beds can pretty much be summed up by not having had our loves in the right order.  They basically affect every single thing in the way that we live.  

Adding to this, we’ve seen the emergence of a modern civilisation new way of thinking where the type A personality go-getters figure that they can put more than one love on the top of their list and excel at each one.  They feel entitled and truly believe that they can “have it all”.  The problem with this is that there’s only so much of the pie left and one of the prices that we end up paying for this mistake is half-assing each priority or love.  For some reason, not sure if it’s advertising or societal peer-pressure, but somewhere sometime someone taught us the lie that we could do it all.  And those of us who believed this lie dove in head first pursuing everything.  We can temporarily trick our bodies into achieving this by burning the candle at both ends, but eventually the price is loss of our physical (and emotional) health.  Eventually the body says NO.  I now realize that I have succumbed to this, especially since Adele Type 1 diagnosis over 14 years ago.

I personally believe that as soon as we become a parent a huge part of our life-pie no longer belongs to us.  I believe parenting to be by far the most important and difficult job that we will ever do.  But what does it mean to be a “good parent”?  Working extra hard developing your career so that you can give your kids more stuff and better life experiences?  Showing your kids love and praise by posting as many photos and comments on social media stating how much you love them and how proud you are of them?  Maybe it’s much more than that?  

I believe that our job as a parent can be summarized in one simple sentence.  A good parent is someone who can unconditionally love, support and be there (emotionally and physically) for their children.  That’s it.  Much easier when your child fits the mold created by society, much more difficult when they don’t.  I believe that the most important gift that we can give our kids is our presence.  This gift doesn’t cost a single penny, yet its price in terms of our life-pie is very big.

With kids, especially teenagers, there are opportunities for connection that arise at certain times that cannot be forced or created by sheer will.  If we’re not there as parents during these times, we’re missing the boat and our children are the ones who are losing.  These opportunities cannot be replaced or made, they just happen as part of the unfolding of everyday life.  We cannot expect to squeeze all of these moments in during a few weeks’ vacation to make up for all of the time that we are absent in between.  It simply doesn’t work that way.

Add a chronic illness like Type 1 Diabetes and there isn’t much left of our life-pie.  The amount of ongoing stress involved in being a Type 1 parent is extremely high and there’s no way to truly understand this unless you have lived it.  Our Diabetes care team doesn’t fully understand.  Our family doctor doesn’t fully understand.  Our psychologist doesn’t fully understand.  They have learned the Type1 game rules from books and a certain level of limited experience, but they don’t fully understand because they don’t carry it 24-7.  Now, I’m not saying this to put any of these people down because I really appreciate all that they do.  I’m saying this to make all Type 1 gamers aware, because when you’re in the middle of it you can’t always see it.  From the outside, you may project having it all together while everyone tells you to stay positive and soldier on.  But by realizing how much a Type 1 diagnosis changes everything, then my hope is that you can also find and develop a certain level of self-compassion.  

 I used to have a hard time distinguishing between self-pity and self-compassion, but now I am beginning to see the difference.  Self-pity is often one of the first places that you’ll find yourself after a chronic disease diagnosis like Type 1 Diabetes and that’s okay.  But if you stay there, you’ll eventually rot in sickness.  On the other end is what we could call “delusional positivity”.  Here, you’re not acknowledging your wound and if you stay here, you’ll also eventually rot in sickness from within.  Type 1 Diabetes sucks and is so very difficult at times and it is necessary for you to realize and recognize this.  Somewhere in between is self-compassion.  Compassion will allow you to honor your suffering and enable you to keep going.  I believe that self-compassion is as much of an important component of surviving the Type 1 game as administering insulin.  I believe that one of the greatest gifts that we can give our children is to work on ourselves.  To dig deep, heal our wounds becoming a living example of what it really means to strive towards loving ourselves.  This is a lot of work, but such a great investment.  True self-compassion is what comes out of this.  We cannot have self-compassion if we don't first love ourselves

Are you being honest with yourself?  Are your loves in the right order?  Are you living how you want to die?  Living also means suffering.  Are you suffering for the right reasons?  What exactly are you willing to suffer for?

Only you can answer these questions for yourself.

It is that simple.

Monday, December 5, 2016

Where did the finish line go?

I was always a hyper child growing up.  I don’t think that I would have been diagnosed with ADD or ADHD if it existed at that time since I could still sit for a certain period when necessary, but it always had to be in balance with physical activity.  I also did eat quite a bit of sugar back then which could explain this, but I mostly think that I am wired to function at a pretty high speed.  I initially thought that this was normal since most of my friends were high-strung also, but now I realize that most function at a slower speed.  

When Adele was diagnosed with Type 1 Diabetes, the adrenaline kicked in and I dove in at an all-out pace.  I didn’t seem to know how to do things any other way.  I understood the Type 1 game to be a marathon and not a sprint but the thing was that I would probably start a marathon the same way.  Full gas until I blow up was how I rolled.  When I raced BMX as a teenager, the start was the most important part of the race.  If you were not in the top 3 out of the gate it was very difficult to be in contention to win.  We used to practice starts for that exact reason.  Looking back, most everything that I did has been accomplished with an element of speed from the get-go.  It seems to be how I approached everything in my life.

For as long as I remember I have always believed that the highest pinnacle of human achievement was pushing the physical body to its extreme limit.  I believed that a super-fit body gained from a lifetime of dedication, sacrifice and physical training was what our time here was all about.  I admired that more than anything else.  I thought that the goal was getting every single ounce of performance out of our physical bodies.  Anything less seemed like such a waste.  I idolized Olympians and World Champions because given my view of what the human experience should be, they had achieved the highest level.  I know that genetically, most of them were the gifted ones, but the maximization of their physical capacities through a lifetime of training was still the most impressive to me.  They were pushing themselves to their limit.  

Growing up, my heroes were the athletes who stood out because of their physical accomplishments, the champions of their game.  I wanted to be like them.  So based on this belief, I pushed myself in that direction.  And like everything else in my life before, there was no pacing myself as I pursued these goals at an unsustainable fast pace.  I believed that the pursuit of exterior growth was what I was meant to strive for in order to live fully.  Society also pushes us in that direction because anything on the outside can be measured and seen.  This makes sense to our logical brain.  And because of this, it is the norm of how society tends to measure success.  But thinking about the following quote by Eckhart Tolle that I recently came across “Nothing that is of real value can be lost, only the false dissolves”, I began to realize that all that is exterior in reality is fleeting.  It is but a temporary illusion that will surely eventually die or dissolve.   This may partly explain why I was pursuing this as fast as possible with an element of urgency.  Maybe, unconsciously I knew that time was running out and that the window of opportunity was slowly closing?  Maybe what I was pursuing wasn't even real?

A term that is often used to describe an athlete is “being physically fit”.  I now know that there is a big difference between being fit and being healthy.  Being able to bike faster than another does not mean that you are healthier.  Being healthy certainly has a physical component, but it also has a very strong emotional element to it as well.  We tend to forget this.  Very often those that we admire because of physical accomplishments are reaching these heights trying to run away from their emotional problems.  The emotional problem becomes the driving force required to keep on pushing your physical limit.  But how often do we hear of Olympic athletes succumbing to a very deep depression right after their medal-winning performance?  Health all comes down to balance between your outside (physical body) and your inside (heart and soul).  This balance will be different for me than it is for you but it is necessary for health.  It cannot be measured completely, it can only be felt.

We are born perfect, unflawed.  Then, as we grow up, the world messes us up and we accumulate baggage.  This process happens to everyone and is simply part of the human experience.  We can spend all of our time ignoring it while keeping busy building our exterior or we can courageously work on digging, purging and healing our wounds thus creating depth.  Its hard work and very messy, but unlike accumulating exterior accolades, accomplishments in this area are permanent.  This work eventually changes our heart and is the only thing that is real.  

Physically, on my good days, I seem to feel like I have turned the corner towards wellness in regards to my post-concussion syndrome symptoms.  Last week my symptoms were much better, but after a very short fat bike ride on the weekend, I’m feeling the symptoms again.  My progress seems like 2 steps forward and one step back.  Bowen therapy continues to have the most positive effect on my healing. 

Emotionally, in so many ways, my concussion has felt like a spilling of all of my life baggage.  It’s like the container holding all of my issues, wounds, worries and experiences got knocked over and all of its contents have been scattered all over when my head hit the ground.  They were all there before, neatly organized to ensure my survival so far and now they feel exposed, very disorganized and raw.  The task of putting them back in the same order seems overwhelming.  But the reason for the spill is likely that they needed to be rearranged or dealt with and discarded.   It’s a messy job, but it’s time.  What an unfixable “problem” like a chronic disease such as Type 1 Diabetes has started has now been intensified by the concussion.  It is one of its hidden gifts.

The pursuit of exterior accolades is the calling of the ego while interior growth is your soul’s curriculum and in the end, the only thing that is your truth.  One of the hardest parts for me personally in this quest is that much of the required effort for gaining depth is through stillness, not very easy for a person hard-wired to race through or away from life’s hardships.  They say that life’s challenges can either make you hard or soft, bitter or better.  Once you realize this, you get to choose.  That said, I think that it is now time for me to re-balance my outside with my inside by facing my truth, slowing down and softening in order to make room for something better...

Monday, October 31, 2016

Faking it

It does have a name.  It is called “Post-Concussion Syndrome”, but to me it feels more like a condition I would call “Personality Fraud”.  On the inside, I have been feeling like I am not really here, while on the outside, I have been faking it in order to try to still be able to function in the world.  A new buzzword that I have been very interested in the last few years is “mindfulness”, but lately, all I can say is that I feel rather like the complete opposite, I feel “mindless”.  “In a fog” and “out of touch” are other ways of describing it.  My symptoms include dizziness, extreme fatigue, inability to concentrate and focus, anxiety and depression.  This injury has been unlike any other injury that I have had to deal with.

At the time of my Pericarditis health crisis in April 2015, my doctor told me that she saw it coming long ago.  It was “diabetes burnout” disguised as viral Pericarditis.  She said that I managed to last much longer than she expected.  I felt like death at the time, but my ego liked the comment.  It was the epitome of what bike racers strive for, to be “hard men”.   A part of me was proud of it.  Now looking back, it surely wasn’t a compliment because the longer I had been ignoring the warning signs and simply putting my head down and continuing to push harder like if managing Adele’s Type 1 was a bike race, the deeper I was digging myself into the dark hole that I eventually found myself in.  Looking at it that way, it surely isn’t commendable, but rather very, very stupid.  Then again, if I had a do-over, I think things would have to unfold the same way again.  It just seems to be the only way that I learn.  And to be honest, I was just dealing with the stress of being Adele’s Type 1 caregiver the only way that I knew how.  I was doing the best that I could at the time. 

I am not a doctor, but I have a theory that this physical collapse last year was setting me up for the struggles that I have been facing the last few months.  I believe that chronic stress and burnout cause biochemical changes in the brain not unlike mental illness which rendered me more susceptible to injury.  Not only did it affect my ability to focus but also made the concussion symptoms worse since my brain was already struggling with burn-out and exhaustion.  Again, I am not a doctor, but I just know in my gut that this is true in my case.  Looking back, I could feel it happening last year when recovering from Pericarditis.  I could feel that my brain was different.  Understanding this doesn’t really change anything except that it alleviates the suffering a tiny bit.  I have no regret giving up what I lost while trying to be the best pseudo-pancreas possible for Adele for the past 14 years.  The only regret that I have is that I did feel “off” on the day that I crashed and smashed my helmet in July.   I regret not listening to my intuition and either stopping or backing off.  Again, nothing is gained going there, except trying to learn what I need to from the experience.

I have been going through constant ups and downs since my brain injury close to 4 months ago now.  I have had good days when I feel close to normal but most of the time I feel like my body is going through the motions, but nobody’s home.  What seemed like a minor concussion initially seems to be quite adamant at staying longer than expected.  I thought that I was doing well in August and started riding more, but to be honest, Cyclebetes really set me back.  The stress in organizing the event along with too much riding too soon worsened my symptoms.  A few days after our annual ride in support of JDRF, I finally got in to the SportMed concussion clinic at the Universit√© de Moncton and the doctor told me that I was indeed doing too much too soon which was lengthening my recovery.  I was really a mess, but in total denial.  I committed to healing and promised that I would only think about the bike after becoming healthy again.  This has proven to be easier said than done.  It is very difficult for me to forgo all exercise after being so active for so long.  Physio has helped a lot with regaining my balance and some focus, but the fatigue and inability to push myself whatsoever will still take some time.  On the good days, I feel like I can do more only to feel the symptoms return with a vengeance the next day and linger for days afterwards.  It has certainly been an exercise in patience.  I have started Bowen therapy and am finding that it is helping a lot.

I messed myself up really good.  Sometimes I get angry for letting it get to this point.  Other times I just look at it as the path that the universe has set for me.  Like I didn’t have a say in the way things have unfolded, that it simply had to be this way.  It is my soul’s curriculum.  And my job is to learn the lessons that I need to learn.  True knowledge and wisdom are gained through suffering.

I always feel the utmost sadness when I hear of children diagnosed with Type 1 as babies because I know what the parents will be going through.  Looking back, I still don’t know how we managed.  As a parent, you do what you need to do, but the stress of caring for a Type 1 baby / child is one of the most stressful things that a parent can go through.  The required effort is constant and inhuman.  

To my friends who see me and ask how things are going, that’s the longish answer that I never bother to explain instead of the simple “I’m doing pretty good, getting better”.  I apologize if I can’t seem to commit to anything lately.  It’s just how things have been, up and down.  I only know as I go.  Working full-time, I am quite tired at the end of the day so I can’t really do much during the evenings except rest.  Looking at the big picture, I can see progress being made.  It just hasn’t been linear like most people assume.  And as much as I look “normal” on the outside, this is what’s been going on inside. 

I’m happy that we’re now entering the “dark” season.  I don’t feel like I’m missing out as much.  This is when wild animals prepare to hibernate for the winter.  I’m going to follow their cue and keep on relaxing, recovering and healing also…  The bikes will still be waiting for me next spring.  Now if I can just stay away from social media with all of the cyclocross photos !