Twenty Years of Type 1 Diabetes

Last month marked the 20th anniversary of my type 1 diabetes diagnosis. To be honest, the specific date of diagnosis is lost to me; I remember it was close to Halloween because the BC Children’s Hospital was fully decorated. I’ve never really celebrated the day. Rather, I acknowledge another year has passed and I’ve been able to continue living as best I can with type 1.  Looking back on the last twenty years (or just the past year alone) makes me realize I’ve come a very long way. After pushing through obstacles while trying to maintain stable blood sugars and a healthy life style, I’ve reached a point that allows me to look back and enjoy the results of the work I’ve put in. I don’t have too much time to relax and enjoy the view, there are still places to go, things to learn, and much more to achieve. There will be high points and setbacks, it’s up to me to push through and surmount the negatives.

In the above picture, I’m sitting atop a pinnacle and looking back at how far I’ve come. What you can’t see are the obstacles I overcame to get here: a boulder field, creek crossing, a steep scramble, and more. Another obstacle you can’t see is the glacier I crossed after leaving the pinnacle as we continued towards our goal for the day, the summit. Crossing the glacier required roping up, using crampons, and having an ice axe ready in case I needed it. Beyond the glacier was a beautiful col between two monstrous peaks; one of which I intended to summit. As we approached the col, I realized we weren’t going to make the summit that day. As disappointing as it was, I still felt accomplished for several reasons: I made it this far, learned new skills, and experienced a beautiful new place. The summit wasn’t going anywhere and this certainly wasn’t going to be my last time in the Tantalus Range.

As I enter into my 21st year of type 1 diabetes, I feel very much the same way I did on the pinnacle. I have come so far in this last year, let alone the past twenty. The best thing I did for myself was take the outdoors more seriously. I worked on building endurance, skills, and knowledge. (To my hiking partners, I’m still working on speed!). I signed up for a high altitude trek, organized by JDRF UK, and summited the highest mountain in Africa, Uhuru Peak (aka Mt. Kilimanjaro). The day our team reached the summit is a day I will never forget.

Summiting Uhuru peak gave me an opportunity to touch base with a few members of my very first health care team (Endocrinologist and Registered Dietician). I was in tears while emailing back and forth, reminiscing about the 10 years I spent under their care and catching up on everything that has occurred in the ten years since.  For me, summiting Uhuru Peak was a million dollar experience; getting back in touch with the Endo and RD I first met twenty years ago was priceless.

I can’t recap the full twenty years of type 1. I spent a number of years not caring about diabetes and trying to hide it from the world. I maintained a “why me?” attitude towards the condition. Because of my attitude, I struggled with diabetes management. My unstable blood sugars and the stress it caused lead to unhappiness, which affected everyone around me. Fortunately, for many reasons, including growing up and facing the reality of the condition, I started paying attention to my health and diabetes management. I have become healthier and I have achieved heights I would have never thought possible.

I now find myself worrying about how long I can put off the inevitable complications that come with diabetes. My worry, however, has been eased thanks to all the inspiration within our community. I’ve met individuals who were diagnosed more than 30, 40, and even 50 years ago, and they are still going strong! With numbers like that, it’s hard not to be optimistic. I’ll admit, at times, I’ve struggled with diabetes management; I think we all have. We also succeed every day and make the most of what we are faced with. It truly is an opportunity for us to learn more about ourselves and help each other improve our lives.

Of course, this optimism isn’t consistent. There are times when I hate the condition; when I’m tired and I wish there were an easier way to deal with roller-coaster blood sugars, inexplicable lows, and so on. Twenty years of diabetes have taught me I can’t live my life dwelling on what I’ve done or haven’t done. I can’t be caught in constant fear of what may never happen. All I can do is do my best to be prepared and never give up. I trust that continuing medical advances will make things easier for us. Diabetes management has come a long way in the last twenty years. I’m excited to see where the next twenty will lead.

In recent years, I’ve met many like-minded people who share a passion for the outdoors. Together, we face the same challenges: physical and mental. As a type 1 diabetic, I constantly face a 3rd challenge: medical. Having to deal with the highs and lows of diabetes, while trying to keep up with avid hikers, has often taken its toll on me. If I push hard, my blood sugars drop; if I push too hard, they spike. If I don’t drink enough water or eat enough carbs the day before, climbing the mountain becomes even more difficult. As you can tell from my previous posts, I have been on a number of hikes throughout the years. Each one has taught me something new about my diabetes and how to manage my blood sugars when I’m outdoors.

While diabetes is a condition we all must face on our own, we are part of a larger community of individuals who face the same obstacles and achieve the same successes. We are never truly alone.  Five or ten years ago, if someone had asked, “What is Type 1 Diabetes?”, I would have replied with something similar to: “It’s a chronic condition in which the pancreas produces little or no insulin, a hormone needed to allow glucose to enter cells to produce energy.” Since then, I’ve been through countless attitude changing events that have made me realize it’s so much more.

When I first decided to write about my 20th anniversary, I reached out to the community and asked my fellow type 1s to share what diabetes means to them. This is what they wrote:

“Amazing how far you can go when you do a little everyday!”
– Sebastien Sasseville, Athlete & Motivational Speaker, currently running across Canada (www.outrundiabetes.ca)

“Living with Type One is a combination of being challenged and frustrated with the daily highs and lows, but the same can be said for living the life of your dreams. There will be peaks and valleys and experiencing both really makes you appreciate and savour the best moments that life can offer.”
– Shawn Shepheard, Owner of The Sugar Free Shawn Show 

“I was diagnosed in May 1956 by Dr RD Lawrence (who had type 1 – please, do Google him!). In 58 years, I have seen so many advances in the control of this significant challenge to life; urine testing to CGMs, LARGE needles to insulin pumps – such great advancement! Having just climbed Kilimanjaro with Ashika, I am inspired and I hold out so much hope for a bright future for all of us!“
– Pete Davies, Fellow Mt. Kilimanjaro Summiteer

“Diabetes, mentally, is like a sport: I’m always on my toes, doing self-checks and self-corrections, anticipating my next move, and considering all the factors that are affecting me now and will be affecting me later. When I make the wrong decisions, I’m disappointed for not only letting myself down but also often holding my teammates back. But when I make the right decisions and have a good blood sugar, I’ve scored.”
– Laura Stewart

“Diabetes is like any other challenge. It’s an opportunity to examine ourselves, deal with failure and attempt to survive. The stakes are high and the odds against us but that’s what makes it fun in a not so fun kind of way.”
– Steve Richert, Owner of LivingVertical 

“Diabetes can usually be seen as something negative but for me diabetes has given me life. It has given me opportunities only some can dream of. Opportunities to travel and meet some inspirational diabetics along the way that are now close friends that help you understand and help you feel like you belong. My Diabetes and I are a team, although we have our ups and downs (literally) it has given me confidence and made me a healthier person.”
– Kelsey-Jean Hird

“Type 1 is an opportunity. It’s an opportunity to become an expert in your own health, an opportunity to challenge yourself each and every day, an opportunity to be connected to a vibrant and inspiring community of individuals kicking diabetes butt each day. Let’s be real – the opportunities that Type 1 gives us are not always the best (complications, burnout, sheer exhaustion from dealing with the disease day in and day out…) but every so often diabetes gives something back. And for that I can be grateful.”
– Jen Hanson, Executive Director at Connected in Motion

“Diabetes, hmmmmm. A tough roll of the dice but I realize it has made me who I am. I feel that I am living a much more adventurous and interesting life because I have diabetes. I have chosen to take on challenges and to succeed with diabetes rather than have the disease controlling me and I hope that I can inspire others to do the same. I would certainly rather not have diabetes, but if I am going to live with it, then why not shoot for an amazing life with diabetes.”
– Dave Nevins, No Limits

“I was diagnosed with T1 in 1972. In 2003, like a lot of folks, after a long history of overtreating lows I was about 50 lbs overweight. I started walking, then eventually running, because it was the only thing I could do, in private, that didn’t require a lot of gear and wouldn’t embarrass me. I’ve been active ever since. This last year I completed my first olympic distance triathlon, my 2nd 100-mile bike ride, my 2nd ultramarathon, and my first multimarathon. In November I hope to complete my first quadruple marathon. I’ve been grateful for the inspiration of others and the support of my wife Leslie, and I’ve never looked back.”
– Don Muchow, DFW Diabetes and Exercise Alliance

“Diabetes does not define me. Diabetes is just one part of me. It’s important to keep a sense of self even though diabetes sometimes wants to take the driver’s seat.”
– Sean Busby, Athlete, Two Sticks and a Board

“Having type 1 diabetes has taught me not to take my health for granted. I have become a stronger person because of it. I am so grateful for the support that I’ve received from my family and friends in the past 9 years of living with the this disease.”
– Kevin Jones

“Type 1 is an opportunity, for personal growth, I never chose; I have become more than I thought I could be.”
– Anonymous

“It’s particularly hard for me to say what diabetes means to me as I’ve lived with multiple conditions in addition to Type 1 diabetes for many years. This severely complicates my health situation and makes things much more difficult. When I was living only with Type 1 diabetes after being diagnosed at the age of 11, it was just something I dealt with. Never easy, but I did okay most of the time and kids are resilient. As an adult living with health conditions that make diabetes worse and vice versa, I would say diabetes is a thorn in my side. But one I do my best to overcome and take very seriously with excellent daily self-care. Some days it makes me feel pretty rotten and leaves me frustrated, but I keep going… I have so much to live for.”
– Cynthia Zuber, Diabetes Light & Finding Peace Between the Pokes