I’m still in awe that the Joslin Diabetes Center gives medals for living with a chronic illness, or condition if you prefer. How progressive, how humanitarian, how kind, remarkable and inspiring. And I particularly like what it says on the back, “For 50 Courageous Years with Diabetes.”
I applied for my type 1 diabetes (T1D) medal a shocking eight years ago. I was writing about the medal for the Huffington Post and the woman I was interviewing encouraged me to apply. So I did. Of course, as I say at the end of the article, I only had to tell the husband where he was taking me for dinner to celebrate. But then I couldn’t have foreseen Covid.
You might want to know how it feels to cross the 50 year threshold. Of course it will be different for everyone. In truth, I was more giddy thinking about this day’s approach than how I actually feel today. But then that’s true with most things, isn’t it? The anticipating is really where the joy is. But I do feel proud, relieved, grateful, and somewhat empty. Maybe that too has to do with Covid. Were these normal times I’d be celebrating with friends all week, all month.
I do feel hopeful, however, for all who are behind me. In 1972 lying in my hospital bed, the cold doctor who attended me, gave me the 15 year shorter lifespan talk. Yet today many of us with T1D are living longer than people without diabetes. Largely because taking care of ourselves, we are healthier than the general population.
What follows is a bit stream of consciousness, various things, times and events that come to mind, for to do justice to 50 years of living with type 1 diabetes, I’d need to be writing a book. So, travel with me if you like for a glimmer of years gone by.
One of the first things that comes to mind is the historical gratitude 50 years has given me. You can only have historical gratitude if you’ve lived a long time with this disease. (Okay, yes, now I’ve said illness, condition and disease and still don’t know which is correct.) I was lucky, my diagnosis came after people needed to boil their syringes each day. I began on plastic syringes, not unlike those we still have today, although the needles were longer and not nearly as thin. My one remaining older syringe below.
Of course, then insulin pumps came, continuous glucose monitors ( I use Dexcom G6), DIY looping, and better and faster insulins. Even type 2 medications are being weighed for benefit for type 1.
The first few years after my diagnosis, still completing college away from home, after the honeymoon period ended, when I went to the doctor at the college clinic, the thought was I had type 2 diabetes (after all I was 19 not 9) and I was put on pills. That lasted until I graduated, moved back home and saw an endocrinologist. Horrified, he put me back on insulin immediately. Misdiagnosis is not an unusual story for those of us diagnosed at my age or older.
It wasn’t until I’d had diabetes for 30 years, when I was 48, that I went to a diabetes educator. I was getting married that year and wanted to be as healthy as possible for the two of us. Hmmm…is that a little like saying, “We’re pregnant”? Ah, but I digress. This is when I decided, having just lost my job, through no fault of my own of course, that I wanted to help others with diabetes.
I began by interviewing people with diabetes to capture their unique, and common, stories. Then I went to diabetes conferences to learn. Then I was invited to attend conferences to present what I call Flourishing with Diabetes. I wrote online for magazines and seven years for the HuffPost, this the article that went viral. I wrote three books and continue to write this blog. The last several years I’ve presented to health professionals at global conferences the Flourishing Approach. It’s an emergent way of working that creates safety, connection and trust between professional and patient, and tends to yield improved outcomes for both.
Over these past 20 years I have worked as an advocate, coach, patient expert, writer and innovator. Each year from the very first I would say with a sly smile, “I’m in the xth year of my 20 year overnight success.” And here I am, 20 years later.
The husband I acquired 20 years ago has been my biggest supporter. He has often accompanied me to conferences, sometimes presented with me, and always had, and has, my back. When there was concern about sharing one’s numbers from your Dexcom, we had only one incident. Looking at my Dexcom reading on his Apple Watch early in this experiment, he said, “You know your blood sugar’s 63.” I said, “Yes, I know, I’ve handled it.” He then said, “Does it bother you that I tell you?” I replied with a smile, “Not yet.” And it never has. I want someone to have my back.
I’ve had hypoglycemic incidents. Luckily only three were extreme, and luckily none needed a trip to the ER. One was in London, where I found myself in the middle of the night staring into the bathroom mirror trying to figure out what I was doing there. The 29 mg/dl on my meter let me know. Another was on Fire Island, where I’d walked much more after dinner than I expected. I had trouble locating my friend’s house where I was staying because my foggy brain couldn’t read the map on my iPhone. The third was after swimming in my friend’s pool where the husband was discharged for juice and spilled half of it running back up the stairs in his semi-panic.
But now, at the 50 year mark, for me it’s not about looking back so much as looking forward. Not in terms of how many years do I have left, but how easy or difficult will my diabetes be to manage? Today I can rely on a working brain and a husband. Who knows what the future will bring. I do know there is a small movement to address the many of us who are living long with type 1 diabetes and how care should evolve as we age.
There are so many things I could tell you. Maybe one day I will as I figure out how I want to move forward. But if you’re curious there is more than a decade of blog posts that precede this one, and tons of articles online.
All I know is today it is mild and sunny. The husband is on the other side of the living room on a conference call and tomorrow, the nicest day this week, we will go out for that celebratory dinner. Not at some posh place in Manhattan, but just as enjoyable, we’ll be sitting outside, under a tent that leans partway into the street, at our favorite local Italian restaurant.
I will tell you, as people say at the end of their lives, it went so fast. I suppose that explains this feeling of emptiness, a quiet shock. Can it really be 50 years, day after day, that I’ve been managing everything that living with type 1 diabetes entails, and of course, my blood sugar? I really can’t believe it. I guess that’s good, you know.
So on this auspicious day – it’s not lost on me either that it’s 2/22/22, (2 being the number of partnership, relationship and collaboration) I just want to say thank you for coming with me on this journey. Thank you Joslin for your whole heartedness. And thank you, each of you, who have crossed my path and allowed me and supported me to do this work.