JDRF T1D One Walk, 2015

Last Sunday, October 4, dawned cold and windy. Gray. It matched up with what I remember at the time of my diagnosis at age 11. I was diagnosed in January, and so of course, it was colder than last Saturday. Still, I remember the gray, and no, I’m not a fan of winter.

Last Sunday was different, though, in that the air was filled with exuberant children and teens, and yes, adults like me. The air was full of hope. I even made it through the 3-mile walk, thanks to partner Karen Zichterman, and the little boys and girls who kept running ahead of us shouting, “Keep walking! Keep walking.”

Type 1, these days, seems so near that cure—or at least very improved methods of treatment. Easier and more effective methods:
• the artificial pancreas (a system of external devices plus a phone app),
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

In the “old days,” the insulin syringes were made of glass. I kept mine in a glass jar filled with alcohol. The needles had to be screwed onto the syringe, and the needles were blunt by today’s standards. Insulin was made of beef or pork extract and it had to be refrigerated. I could not attend a single slumber party without toting along an embarrassing load of paraphernalia. The glass syringe clanged inside its bottle as I walked into each and every front door, or I always imagined it did. For the rest of my painful adolescence, self-consciousness became a constant state of mind.

I took a shot once a day, often without too much thought at all, for more than twenty years. Then there were new medical findings, and a new doctor in a new town talked to me about taking two shots a day for better control. I nodded my agreement, then left the office and did not go back. (I’ve heard that many diabetics have had similar reactions.) After twenty years—by then I’d had a minimum of seven to eight thousand shots—why shrink from a few more? Why such a fuss? Because to me, the suggestion added only “insult to injury”–the injury that has been done to the body, and therefore, the soul of the diabetic. A humiliation of the flesh.

Furthermore, the blood tests of the old days were even more of an ordeal for this child. Doctors insisted I have a blood test at least once a month, and I dreaded them as I have dreaded little since. The tests entailed only what we think of today as a simple and ordinary blood test. At any rate, the blood tests back then also necessitated a visit to the lab at the local hospital, meaning my poor mother had to drag me out of bed very early in the morning on the designated Friday for my blood sugar test.

In my mind, the drive to the hospital always takes place in winter. My mother and I ride through streets lined with bare trees under skies of gray cold to pull into the parking lot behind the emergency room. The hospital corridor is narrow, dingy, filled with garish light, and I feel as if I can hear the clock on the wall though its ticks are not audible. My mother and I sit and wait, and wait, and what I do hear is the clatter of needles and test tubes inside the lab, as well as the most hated sound–one I can pick out to this day—the snap of rubber tubing.

The problem was, is, and will continue to be that I have no good veins. I did have one vein that sometimes worked in my right arm, and my favorite tech seemed to have the most luck in “hitting it.” However, if “old faithful” just didn’t seem to be pumping a blood sugar day—the ordeal that followed could only be called a fishing expedition through the flesh of a child with a very long needle.

Not so with the children of today. Blood glucose meters for the fingers, continuous glucose monitors, and the insulin pump have made all the difference. Research has helped. Of course, I took several years to get on the pump—such was my distrust of medical personnel and pharmaceutical companies. In the days of my introduction to the pump, I tried not to be shocked at the size of the needle I had to use to get the miniscule tubing into my stomach, the insulin into my system. Not to mention, the purple bruising shocked even me, the old-hand.

Yes, I think all diabetics want “less sticking” please. I am a huge fan of the pump as my health has improved and I feel so much better. Yet I know many who don’t choose to wear a continuous glucose monitor, in addition to the pump, due to the fact that its use still means another device that must be inserted into and worn on the body. The reason I say I “walk for the kids” is so that one day less invasive methods can be found, methods that will not discourage adolescents and young adults from taking care of themselves. I favor methods such as the “smart insulin” or the encapsulated beta cells that can be fit into the body perhaps as little as every 2-3 years.

However, I’ve also realized, I walk for “the parents.” One of the most touching remarks I heard at the walk was from parents who admitted to having not slept for a whole night since the diagnosis of their child five years ago. Yes, everyone is afraid of that low at night that can signal danger for the sleeping child.

Right after my diagnosis, I’d avoid bedtime as long as I could. I did not want to lie on my bed and stare at the ceiling night after night. I can still remember the white squares of my bedroom ceiling as I’d count them over and over, one by one. I had trouble sleeping. My family lived on Main Street in our small town, U.S.A., and so I also listened for the soothing sound of the passing cars. As their lights lazily swept the ceiling, I’d pray to fall asleep. This was how I became twelve years old.

Of course, in the days when diabetics took just one shot daily, perhaps my insomnia was a result of high blood sugars—who knew back then? I did often awake during the night with the feeling of low blood sugar, and this became the terror. What if one night I didn’t wake up? Today, as insulin is so much more effective, and yet so many now fail to feel those lows coming on—of course parents are beside themselves over their child’s safety even while home in bed!

Too much fear, and yet the younger ones are so full of hope that they fill me with it. Doing well on their pumps, they are confident, as I wish I had been. As to the continued problems, I’d like researchers to keep working and to echo the children running ahead: Keep walking! Keep walking!