Today marks 25 years with type 1 diabetes. 25 years since I was whisked away from all of my friends to jump a hastily booked flight across the Atlantic, back to the States, to fly overnight and alone with a disease I knew little about and which I thought was probably terminal.
I was shocked, devastated, confused, afraid, and lonely.
The shock faded first, and though it tended to return in fits at unexpected times, it quickly retreated each of those times. The devastation slowly receded as I realized bit by bit that I'd still be able to do a lot of things. The confusion still visits quite often, 25 years later, but it's a familiar visitor, and one usually brushed easily aside, because even when blood sugars are wacky despite confident carb counts, ratios, and rates, I now know that sometimes they just don't follow predictable rules, yet I have to move forward with the rules immediately anyway, so the confusion needs to be dismissed. The fear diminished too, over the early months and years, as the daily (hourly?) work of diabetes became routine and commonplace.
Loneliness turned out to be the toughest foe. It was the least expected, and it was the most persistent. However, in just these past 3 years, I've taken the upper hand, with my newly discovered secret weapon: the diabetes online community and a combination of virtual contacts and face to face meetings, the latter only possible because of the power, organization, and commitment of the DOC as an online force that occasionally but necessarily goes beyond online to in-person. I didn't know that I felt lost without it because I didn't know that it was missing or that it existed. Now I know what a crucial part of my diabetes self-management it is and I am grateful for the many new friends and shoulders it has brought.
My great regret is that though those who know it love it, there seems to be little similar recognition among most healthcare providers, and this keeps it from being introduced to most patients and their families, for the healthcare providers are usually the place most people turn for support resources. So during these next 25 years, while I await the cure that I was assured would arrive 15 to 20 years ago, I plan to conduct some of the research that will validate the DOC and bring its existence and its benefits to the consciousness of the healthcare community, and in so doing extend its many opportunities and promises to the vast majority of patients who don't know it's out there or what it can do. My wife is dedicated to partnering with me in these efforts, as are many in the DOC who have pledged their support. You know who you are, and I am grateful. Together we can do this work, and maybe those countless others can have just some of their shock, devastation, confusion, fear, and loneliness diminished more quickly and more substantially than they were for me until now.