WHAT MOTIVATES US WITH DIABETES: NUMBERS OR NORMALCY?

When diabetes first invades our lives, we fight back. How we fight back changes over time. I don’t mean the tools or knowledge we possess, but the reasons WHY we apply them in our daily lives.

Our first diabetes motivator is usually fear. It’s handed to us on a silver platter when we’re diagnosed. Free advice rains down upon us like a monsoon. It’s a constant bombardment of cautionary tales from friends, family, co-workers, and of course the medical profession. When I was diagnosed, we like most others were utterly ignorant about diabetes. The public’s perception of the differences between diabetes types was in its infancy when I was diagnosed. People generalized about what would happen to me based on stories from the previous decades. Furthermore, my diabetes doctor was not an endocrinologist. He was a skilled pediatrician and did what he best knew how to do, but without any educational resources to back him up. Our “education” was the Joslin Manual. I couldn’t read it at age 9 and had no clue. I tried a couple of pages and tossed the book on the table. Very little about diabetes was kid-friendly back then.

The stories of blindness, amputation and early death would lurk in the corners of my mind for years. Never did anything I saw or heard act to dispel these fears. They festered. Nevertheless, I went on with my life and was loved and supported unconditionally by my family, who did everything they were told. We only had blood sugar measurements collected at checkups: a small metal lance was poked into my thumb to extract a sample of blood when I was fasting. That was the “A1C” of the sixties: a single blood sugar value done every several months.

BG measuring devices would not appear in homes for over a decade. Often, they were just visual strips and not read by a meter of any kind. You even needed a water source to rinse the blood off the test strip to allow a color change to happen before reading the result visually. Those were bulky and not easily carried around.

So, fear of diabetes complications was my first diabetes motivator and remained with me for years. As I was not taught to fear the results of the lone BG check when I went to see the doctor (I feared to collection process far more!), the results carried no real emotional burden on me that I recall. The urine glucose testing apparatus we used was color based. Blue (no sugar) was always a preferable color to see as opposed to bright orange (lots of sugar spilling into the urine). Therefore, I was spared the fear of bad numbers when I was a child growing up with diabetes. It’s why I teach all my patients that use of the words ‘good’ and ‘bad’ should have no place in a discussion of blood sugar levels.

The creation of the A1C test in the late 1970’s ushered in a new fear to deal with. My first A1C was done in 1980. The result was 10.8%. This was after years of taking a single injection daily: that’s it. By now I was in medical school and was learning what an A1C was. Over the next 15 years, we would come to learn of the association of lower A1C results with reduced risk (not full elimination of risk) of certain (but not all) long-term complications of diabetes. Over time, the A1C would go on to become one of the greatest “fears” I see each day in my medical practice. Fear of the A1C result is visible on the faces of parents and some teens when I open the paper with the point of care A1C result. The facial expressions and comments which follow the release of this information are revealing of the fears which lurk within.

As home blood sugar monitoring expanded through the 1980’s, now the ability to judge numbers went into overdrive. More fodder for the fear monster.

As a medical student I also had “fear of change” to deal with. I had become comfortable with one injection per day before I met my first real endocrinologist, Dr. Melvin Prince. The A1C he shared with me was somewhat meaningless when I first saw it. I had to be taught to learn what it meant before I learned to appreciate (or fear) it. But to make the A1C change, I had to change. That was a fear I had to overcome. I see many patients and families who are fearful of change. The status quo can be like a warm blanket wrapped around us, insulating us from the cold world of newness and uncertainty.

As life moved on, I had others join my motivation team. When I had my first severe low blood sugar event (well after leaving home), I added “fear of hypoglycemia” to my team roster. It follows me to this day but is much better tamed now that I Sugar Surf.

But as life moved out of my parent’s world and into the world I was creating for myself, my 'team of fears' started to become outnumbered by some new members. These motivators were much more pleasant to be around and over time silenced many of the fears I grew up to loathe.

Getting married meant a commitment to another person besides my family. Life plans require a commitment if they are to succeed. Building a family, securing a job, advancing a career, and serving others motivated me to take better care of myself. After all, if I was the foundation upon which all those actions rested upon, then I must create the best foundation I can for myself. To fulfill the vision of my life as I became an adult, I realized I must take care of myself no matter what the cost in time or attention.

It does take time each day to be self-responsible, but not as much as I thought. Ironically, doing it poorly actually took more time away from my day. It only seemed logical to take my self-care seriously. As I took command, new tools and methods were mastered (multi-dose insulin therapy at first, then early version primitive insulin pumps, BG meters and then the pattern management skills to orchestrate them all). Later, continuous glucose monitoring (CGM) would open a whole new world of empowerment as Sugar Surfing was created.

Never in my early years did I think I would have children, see them grow up, graduate high school, college, get married, and start their own rich lives. Those things happened to everyone else, but I couldn’t easily visualize them happening to me. I was trapped by my inner fear of the future. I realized that each of these incredible life events were the benefits of taking care of myself. It wasn’t an A1C: it was a NORMAL LIFE and all the ups and downs which come with it. That has been my reward for caring. The reward of a normal life.

And now, after living 52 years with type 1 diabetes, I hold a most darling young woman’s hand in mine: my first granddaughter. All the tasks and mental burdens of living with diabetes slip away when confronted with the power of family and our future. Every day I awaken I consider a blessing of life. I’m ready to see where the afterlife takes me, but not quite yet. I’ve still got a lot more to do and see here. So…if you ever find yourself “why am I doing this”, the reasons are most likely all around you.

Consider what your motivators are: fear, hope, love, or a collection of numbers? Our motivators are many and they shift in priority over the arc of our lives. Perhaps we can find ways to minimize fear and promote empowerment sooner. Share your stories about what motivated you in the past and what motivates you now. We likely have much in common.

Sharing the methods of Dynamic Diabetes Management (Sugar Surfing™) is hopefully not the last chapter of my life. Let's pray it will be a long one. I seek to share a message of hope, perseverance, and living well with diabetes with anyone willing to listen. Thanks to all those who have attended live workshops, my current and former patients, and the generous donors who are making that happen with our new educational non-profit charity.