Thursday, November 13, 2014

Looking at the glass half full on World Diabetes Day

World Diabetes Day is celebrated every year on November 14th, the birthday of Canadian Sir Frederick Banting who, along with Charles Best, discovered insulin in 1922.  They gifted the patent rights to the University of Toronto, with the intention of making the treatment widely available to diabetes sufferers.  Sadly, I cannot see such a willingness to help patients happen with today’s pharmaceutical companies if a true cure were discovered.  Thank you very much Sir Frederick Banting and Charles Best for saving Adele’s life. 

Leading up to this day of celebration, I have been thinking about our personal journey playing this Type 1 game for just over 12 years now and how it has molded us.

Ten years ago, I understood that for everything that we’d lost, that there was also something gained.  I knew this to be true, but in my heart I still couldn’t see any gains at that moment with Adele’s Type 1 diagnosis.  I really just felt broken.  It was less than 2 years after Adele’s immune system mistakenly attacked and destroyed the cells in her pancreas that produce insulin and regulate blood glucose levels.   

I was mourning how this chronic disease had tarnished Adele’s initial clean bill of health, the quality and potentially shorter quantity of her life and the selfish part of me was mourning the loss of a simpler life as her father.  I was bummed for all of the extra that we needed to do now as Type 1 parents thinking that this wasn’t what we signed up for.  I knew that sometimes things like incurable chronic illnesses just happen.  I understood this to be true, but my subconscious mind kept telling me that it still only happened to others like it always had until then.  It wasn’t supposed to be like this.  I felt sad, cheated, afraid and vulnerable.  I dreaded the upcoming work that we needed to do from now on.  I resented that there would never be any closure, that this was never going away unless a cure was found. 

Fast forward to 2014 and I have been asking myself if anything was indeed gained during our Type 1 journey since then.  Kind of like a “Where are they now” reality show where they profile people or families ten years after winning the lottery jackpot.  Was this the best thing that ever happened to our family or the worst?  Was the aftermath growth or destruction or a bit of both?  So as I sit here writing this, I must ask the question: How has Type 1 gaming affected my life path?  There is absolutely no question that Type 1 Diabetes has changed me (as well as our entire family).  It has surely deepened the wrinkles on my face as well as darkened the circles beneath my eyes.  But it has also undoubtedly been a catalyst for growth and positive change… 

In 2009 I wrote a few posts that many didn’t agree with ( and  Five years later, I still believe that the key to living well as a Type 1 is that we need to learn to LOVE it.  Like siblings, we tend to not always get along, but between these fights, I do think that there is an ever present underlying amount of LOVE that needs to continue to flourish.  I can’t always access it, but I feel that it is there.  Type 1 hatred will surely eventually make us sick.  And still won’t make it go away… 

Type 1 Diabetes has made me appreciate how truly amazing my body is.  Having studied biology in university, I had learned a lot about how we constantly adapt, thrive and survive as living beings, but trying to be Adele’s pseudo-pancreas every second of every day has really put these things in perspective.  I have gained so much respect for my body and everything that it does in order for me to be alive.  I also realize that all of this awesomeness can go away in an instant.  Type 1 Diabetes is a constant reminder of life’s fragility.  It can never be forgotten.  Completely ignore Type 1 Diabetes for even just a few hours and the Type 1 gamer will surely become very sick.  Keep this up a few hours longer and the Type 1 gamer slips into a coma, eventually ending up in a coffin.  Without insulin, a Type 1 gamer dies.  Facing death like this surely has a way of forcing you to focus on what’s important since you’re constantly just one insulin injection away from the Grim Reaper.  We’re all going to die one day.  Type 1 Diabetes is a constant reminder that it could be any day.   

This past year I have also come to recognize a certain irony with chronic disease.  Yes, they are very serious but at the same time, if we take them too seriously, we become consumed and paralyzed by them thus leaving us in a less than ideal state to be able to give the best care possible.  By trying to control too much, we end up being too tired to control what can be controlled.  We also end up enjoying too little.  Being human, I still get caught up in this, but I really do think that I appreciate the little things that much more.  Society and marketing teach us that joy is in the big things like once in a lifetime trips and expensive material possessions, but in reality life’s deepest joys are in the simple everyday moments that are too often overlooked.  Things like family movie night, going for a run with Adele and sitting down for a family supper on a Wednesday night talking about our day.  I know that we often realize these things as we get older if we’re paying attention to what life is trying to teach us, but I also believe that Adele’s Diabetes has been a catalyst for changing my way of seeing what’s really important in life and to not take things too seriously. 

After over 12 years of hard work, I believe that I am now beginning to recognize some good that has come out of our Type 1 journey and find that it is important to recognize and honor this even if it not the path that I had chosen.  Does this mean that I do not wish for a cure someday?  I think it actually motivates me that much more to do all that I can to be part of a cure…   

Again, thank you Sir Frederick Banting and Happy Birthday !!

Friday, May 16, 2014

Maybe you're now old enough to understand why...

I really don’t think that I’ll ever be done blogging (or writing).  Yes, it does require time, which isn’t always something that most have plenty of, but it can also be a bit more complicated than that… 

Adele is in her senior year of junior high and is now online more than I am.  Like most teenagers, social media and the internet are a big part of her life now.  Most of my blog posts are quite raw, tell it like it is, don’t hold anything back writing and for this reason I would not want Adele to read them and misinterpret the content and feel bad in any way.  I really don’t know if Adele has ever spent time reading my blog, but it being there on the web, it is always a possibility.   

Adele, if you are reading this please know that we LOVE you very much and that we will ALWAYS be there to support you in every way that we can.  Type 1 gaming is a lot of work and very frustrating sometimes but none of this is your fault whatsoever.  You have often asked me why your name came up in the Type 1 lottery, and like always, I cannot give you an answer other than because you are strong enough to handle it.  Life often gives us challenges and Type 1 gaming is just one of them.  It’s not personal.  It’s not your fault.  You didn’t do anything to cause it.  You are not less because of it.  It just is. 

The best things in life require the most work and also force you to step out of your comfort zone.  The sweetest bike rides require work dedicated to bike maintenance and setup, regular saddle time to gain fitness and Mother Nature’s cooperation with perfect weather conditions.  Relationships require lots of time and attention as well as inevitable rough times working through many challenges and problems.  A close family unit requires consciously making time for each other, compromise and supporting each other through thick and thin.  But this discomfort and hard work are also the very reason WHY these things are the very best that life has to offer.  We never appreciate things that come easy…  Type 1 gaming doesn’t come easy and we appreciate and love you that much more because of it. 

The day of your diagnosis, I promised myself to do every single thing in my power to help, support and ensure your best care possible.  I never, ever regret or question all that I do for your Type 1 Diabetes and would do it all over again in a millisecond.  No questions asked.  You are worth every single second of effort that we put into your care.   

As Type 1 gamers, I believe that we have a responsibility to be part of the movement towards new Type 1 treatments and the quest for the cure.  This includes spreading much needed awareness and supporting research through JDRF.  It is our responsibility to speak up, to tell it like it really is.  Type 1 gaming mostly happens behind closed doors when no one else is looking or listening which is why I created this blog, to open this door even just a tiny bit in order to give outsiders a glimpse of what it’s like on the inside.  We owe this to ourselves and to all other Type 1 gamers.  We’re not complaining.  We’re speaking up. 

You’re you and you’re perfect just the way that you are.  You have all the tools within you to strive.  You are and always will be enough.  I wouldn’t change a single thing about you Adele…  Well, I’d take away your Diabetes if I could.  But, I think you already knew that.

I love you Adele