An excerpt from Confessions of a Problem Seeker: My Lifetime Journey From Busy Brain To Loving Heart.
In his own intuitive way, with only a second-grade education, my dad knew something was not right. Just hours after peeing in a paper cup at our pediatrician’s office, the doctor called my mom at my father’s butcher shop to inform her I had juvenile diabetes (now referred to as type 1 diabetes). Diabetes was less common in 1969, and my parents were ill-equipped to process it. They did not know anyone with diabetes, nor could they Google it. And they could not join a Facebook group. The doctor had already informed them of all the scary things that could happen to me. As Holocaust survivors who lost most of their immediate family members, I am sure the thought of a serious disease harming their younger son tapped into a visceral defense not visible to me. Their instinct to protect was beyond parenting. It was triggering. My mother later told me it was the only time she saw my father cry, breaking down at the store after receiving this news. This courageous heroic partisan fighter of Nazi aggression, my tough dad, was helpless and afraid.
When Mom returned home after getting the diagnosis news at the store, I ran to the side door per usual to greet her or help carry groceries from the car. Her usual smile was replaced by a more distracted and serious demeanor. Paralyzed and confused by my diabetes diagnosis, she stalled and revealed very little: “You need to go to the hospital now.” “Huh. How come?” “They need to do more tests,” she stonewalled. “Now?” I innocently asked. “Yes. Get dressed.” “Okay,” I said dutifully, but I felt something dark rising in me. When visiting hours were over, a lonely fear replaced my excitement about the remote control TV in a big bed that went up and down. I had never spent a night away from home except for a sleepover at our cousin’s house. I was scared and alone.
I awoke in the middle of the night to an odd sensation of uncontrollable shaking, confusion, and cold sweats. I contemplated pressing the call button at the end of a long cable tied to my bed but was too shy and insecure to call attention to myself, hoping this would just pass. I took extra blankets from the closet, assuming I was shaking because I was cold, but to no avail. Finally, in the early morning, somehow these symptoms subsided. I shared my nighttime experience with the scrum of doctors and nurses huddled at the foot of my bed for morning rounds. They looked at each other with cross-eyed concern that added befuddlement to my sense of guilt. The pediatric chief then sternly impressed upon me the need to immediately call them should I ever feel that way again. Okay, whatever, I thought. This was all kind of surreal anyway. Let me get back to watching Leave It to Beaver. And yes, I will take some more of those diet orange sodas you have been giving me to drink, please!
Though no one told me at the time, I had apparently experienced my first hypoglycemic episode (low blood sugar) that night. I was lucky. Untreated with glucose in some form, I could have lapsed into shock, coma, or even died. I had no reason to know that the injections they gave me were large doses of insulin to reduce the dangerously high blood sugars I arrived with. But how much insulin was a bit tricky then and always. If too much, your blood sugar can go too low as it did that night, the first of thousands of times for me, including a few where I actually teetered on that near-fatal razor’s edge. On the other hand, if not enough insulin, sugars remain too high, which is a different kind of insidious danger and what I have spent a lifetime obsessively avoiding.
I continued in my ignorance at the hospital when two days later, a tall, pleasant nurse with thick blonde hair entered my hospital room with syringes in one hand and an orange in the other. “Today, you are going to learn how to give yourself injections,” she announced. I shot her a puzzled look or maybe even a “Huh?” as I looked up from the GI Joe battle scene I was choreographing on the buffed beige linoleum. She explained that as a diabetic I would need to give myself shots every day. “I have diabetes?” I innocently asked. She scurried out of the room in a panic and did not return, no doubt confused how this kid did not know why he had been in the hospital for the past two days.
The awkward interaction with the orange-toting nurse led to my inquiry when my mom came back to visit that day. I was not angry, just naively curious. She did her best to suppress tears and emphasized the words “normal life” a lot, as if trying to convince herself as much as reassure me. Or perhaps that is what a social worker told her to say, chapter six in the How to Tell Kids They Are Screwed Handbook, as she prepped to lower the boom. It had gotten all too real. This was not the first and certainly not the last time Mom’s instinct to protect me backfired, but her instinct was understandable. She and my father hatched a plan to obfuscate until they could figure this out, but it only added weight to this ominous invader that had embedded itself into my body and my already insecure little psyche.
Back then the word diabetes was only familiar to me from public service ads on TV trying to generate donations, somberly highlighting the ugly consequences of the condition: heart and kidney disease, blindness, amputation, and early death. Unfortunately, well-intentioned parents and even health care professionals unwittingly reinforced that message as a strategy to motivate my compliance: “This does not have to happen to you if you take care of yourself.” Yeah, but you may be missing the part of the message that it could happen. Should I unremember that?
Over 50 years ago, complications from type 1 diabetes were almost inevitable, and somehow that was conveyed to me. What does a 10- going on 11-year-old kid do with those ever-looming dark possibilities? First, reach for some nurturing and support. But from who? Where? There was no one in sight. My parents were not available to feel or hold. They had shut that down a long time ago to survive their own traumas. There were no support groups or therapists. No social media or internet. Hiding seemed like a good option, especially when Mom and Dad suggested this affliction was something I should not share, lest I might be deemed damaged goods. Holocaust survivors have good reasons for looking over their shoulder and avoiding emotional attachments, but it did not help my young, fragile psyche. I was forever changed.
Howard Steinberg is a patient advocate and author of Confessions of a Problem Seeker: My Lifetime Journey From Busy Brain To Loving Heart.
