“It felt like my parents didn’t care,” I tell Jack, the social worker at the Diabetes Center, trying to keep my voice steady. I am 54 years old, and feel a bit ridiculous to be crying about a lack of attention from my loving parents 40 years ago.
“When were you diagnosed?” Jack asks. “1973,” I said, watching Jack through my wet eyes. He smiles at me and nods. “Uh huh. You probably don’t know that in the '70s, parents were told to not make a big deal out of diabetes, to let the child make her own way through the adjustments after diagnosis. Your parents were being good parents, following directions from the professionals. It was the professionals who were wrong.”
This information takes a moment to sink in. “They were told to let me handle it?” He nods. “I was ten years old!” He nods again. “I know. Can you believe it? When I started working here, in 1974, I was the first and only social worker at this major diabetes center. I had to work for years to persuade my colleagues that diabetes—that any chronic illness, really—has a huge mental health component.”
Jack has just assuaged decades of pain for me, and clarified decades of confusion. I had known my parents loved me, and were very concerned about me. They told me so, and they took good care of me when I had serious problems with hypoglycemia, low blood sugar. But they never talked with me about what it felt like to me to have diabetes. They never knew how scared I was about becoming a misfit like my classmate Alice August, who had diabetes before I did. And they never asked what it was like to lose control of my body, and my mind, with severe hypoglycemia. I had thought it didn’t occur to them to ask. And now Jack is suggesting that maybe they had gotten the message that they shouldn’t ask. Maybe they weren’t thoughtless; maybe they were doing what they thought was right.
My experiences with hypoglycemia are, in fact, so vivid and strange that I need to share them with people. Of course, much of the experience in the past was out of my grasp: I was unconscious. But I have begun to see my own neurocognitive adventures as a way to understand and empathize with the weird brain experiences other people have, with dementia, with schizophrenia, with substance abuse. I understand some of the fears associated with cognitive dysfunction, and find meaning in helping people process and adapt to the terrifying loss of self that can occur when the brain doesn't work right.
A few examples of my big experiences of my brain going out of whack:
One time, my husband’s in the kitchen, cooking dinner. I’m sitting at my sewing machine, having trouble lining up the squares of fabric for my quilt. I sit a moment, staring at them, unable to focus. “Dave,” I say at last. I don’t move from the chair because I can’t. “What?” he asks, in the midst of browning chicken. “I have low blood sugar.” “What?” he says again, coming to the door to hear me. “Low. I need something.” He sizes me up, and swiftly moves back to the kitchen to get some juice. While I’m waiting for him, time slows down, really, really slow, and I realize that in the midst of getting me the juice he has turned on the radio. There is a murmur behind me, two women talking like they do on NPR, quietly. I try to focus on what they are saying, but I can’t quite make it out. I’m mad that he took the time to turn on the radio when I need the juice right now.
When he finally comes with the juice, I say, “Why’d you turn on the radio? I needed this right away,” and I drain the glass. He stands beside me, looking at me intently. “Hello? The radio? Why?” He takes the glass from my hand. “Honey, I didn’t turn on the radio. It’s not on. I brought you the juice in less than 30 seconds.” And I burst into tears, the adrenaline response to hypoglycemia raging through me. I later google “hypoglycemia and hallucinations” and learn that some people report having auditory hallucinations with severe hypoglycemia. I was glad that the voices I heard were two women conversing in NPR tones, not scary voices telling me they were going to kill me. And I sure developed empathy for people who hear voices that seem realer than real.
Another time, I’m 16, lying in bed in the middle of the night. My brain is struggling to hold on to the meaning of life. The meaning of life is a formula, and it begins “R = _____.” I feel the rest of the equation slipping away as I become more conscious. I desperately want to hold onto the equation, to the knowledge of what R actually equals, because that information will save the world. I feel it moving away from me. I am bereft, and I groan. Once I start groaning, I realize that that is a good thing to do, and I groan louder because, I begin to know, I need help. I need help badly.
My father, asleep down the hall, hears me and comes, and I clumsily say, “Juice,” before fading back into darkness. He quickly assesses the situation, gets me orange juice, rouses me enough for me to drink it. I come back slowly; he holds my hand tightly. I tell him I have to go to the bathroom, and he stands up and I try to get out of bed, but my body doesn’t work right. My legs won’t bend. We are both so pumped with adrenaline that my unbendable legs strike us as funny, and we laugh as I step straight-legged, a version of John Cleese in the Ministry of Silly Walks, hilariously awkward and about to pee my pants, down the hall to the toilet. By the time I flush, my brain is up to snuff, and I walk normally back to bed and fall asleep. And yes, I still wonder about that formula, about the meaning of life that I held in my brain for a few tantalizing moments.
Another episode: I'm 22, in bed in the apartment I share with Kevin. I am in darkness, and then gradually realize that there is a small, star-like light at the end of a tunnel. I’m not walking—I don’t have a body—but my vision is leading me through the tunnel, toward the star. And then I hear a man’s voice, saying my name really loudly: “Elizabeth! Elizabeth! Can you hear me?” I’m irritated by the loudness, by his stupid question: Of course I can hear him! He’s shouting! My eyes open briefly, and I am even more irritated, for the strange man is shining a very bright penlight into my eyes. I close my eyes and groan, and he shouts again: “Elizabeth! Open your eyes, Elizabeth!” I want to punch him in the nose, so I open my eyes again.
A few minutes later I’m being wheeled into the Emergency Room. A very young man in a lab coat accosts me and speeds along beside us as the EMT maneuvers the gurney into the unit. “Elizabeth, was this a suicide attempt?” I’m barely conscious, and the question rattles my bones. “What?” I demand, and he repeats: “Was this a suicide attempt?” I stare at him, and see a blonde boy with glasses, trying hard to play doctor. “God, no,” I say with shock. “Are you sure?” he says. I speak slowly, as he is obviously mentally challenged. “It was not a fucking suicide attempt.” (Apparently adrenaline unlocks swear words as well as laughter.)
Luckily, he isn’t my ER doctor; instead, my neighbor is. Amy is sensible, smart, and lives three apartments down from my boyfriend and me. I don’t know her, but she’s familiar, and reassuring. After checking me out, she suggests I follow up with Dr. Walsh, who helps people get on a new treatment for diabetes: an insulin pump. She also reminds me that really low blood sugar like mine makes my brain stop working, and that I could have died.
Many years after I got an early-model insulin pump, Jack, the social worker at the Diabetes Center, tells me to set my new Continuous Glucose Monitor’s alert to go off when my blood sugar edges down to 75 mg/dl. Why so high? Why not a number below the ideal normal, at least? Jack looks at me. Apparently I've missed something. “Cognitive deficits start occurring as soon as you hit 65 mg/dl,” he advises me. “Don’t risk getting confused.” Thinking of my history of severe hypoglycemia, I revise his words: Don’t risk losing touch with reality. Don't risk losing the meaning of life. Don't risk losing my actual life itself.
I now keep the CGM alert set at 75, and though it annoys me when it goes off, I remember the NPR voices, my Ministry of Silly Walks, and that boy-doctor demanding to know if I were trying to kill myself--and I get a glass of juice.