Comas, raging hormones and party time!

My first coma was surreal.

I think I was 11 or 12 years old. I woke up vomiting, one of the signs of untreated, deep hypoglycemia -a condition of low blood sugar level that happens with type 1 diabetes. Apparently my blood glucose level had dropped during the wee hours of the morning and I woke up too low.

This being the first of such deep hypoglycemia conditions, my mother didn’t think the symptoms were connected to diabetes. She saw me vomiting and she called the family doctor, who was well aware of my diabetes. He and his bloated beer belly diagnosed me as having a “high acetone level” and gave me a pill. As if time stood still for a second, my mother and I locked eyes and we intuitively agreed that the pill was the perfect solution for absolutely nothing.

Rimini, Italy.

Meanwhile I kept feeling my body heavier and heavier and I kept wanting to close my eyes, but I knew that if I did my mother would’ve lost her mind. So I kept pushing my eyes open.

I couldn’t eat anything, because I’d immediately throw it up. She put me in her big bed, where I felt extremely comfortable (my sister and I were never allowed in her bed). I was sweating, kept feeling weaker, my eyelids felt like they weighed close to a pound by now. I kept forcing my eyes open and, with the thin sliver of my brain that was still functioning, I kept repeating, “It’s okay, Mom. Don’t worry, I’m okay.”

Then I heard her pick up the phone and call my uncle, Giorgio. “I don’t know. I gave him sugar but he can’t keep anything in. He’s sweating, pale like death… Yes, the doctor came- gave him a pill!” (Imagine all of this -and more- in Italian, spoken by a terrified mother, on the verge of losing her mind while trying to save her child.)

My uncle, a talented and renowned heart surgeon (famous for having successfully transplanted 7 organs on a 16-year-old), was in Rimini, Italy, where I was, and he showed up at the house very quickly, with a glucose IV. He never spoke much, like an experienced, lonely sailor who goes about his job on the boat without talking much. “E’ ipoglicemia profonda. Gli faccio una flebo.” (“Deep hypoglycemia. I’ll get him on an IV.”) I remember him saying, while my mother kept repeating, “Oh mio Dio, ti prego- grazie Giorgio- mio Dio…”( “Oh God, please- Thank you Giorgio- My God…”)

I don’t know where my father was during all this, but he’s not in my memory.

Prof. Giorgio Arpesella, my uncle. Saved my life, twice.

By now I was feeling like I had one teaspoon of energy left in my entire body. I wasn’t at all scared. I was interested to see what was going to happen, and worried for my mother. I kept glancing at her to make sure she was okay. Then, I felt the big hands of my uncle wrap around my right arm, and when the needle of the IV entered my vein and the sweet juice started to flow into my blood, I saw a glimmer of hope bursting in my mother’s eyes.

That’s when I felt it was okay for me to let go, and I finally closed my eyes. Like the air that progressively runs out of a syringe as the piston moves down, I felt my life energy flow out of my body from my head, down to my neck, my torso, my hips and legs, my feet and when I felt the last bit ooze out of my toes I knew I would’ve passed out. With hindsight I wish I saw a light, or heard a voice, or something life transforming. But it all simply went to black.

Bonifacio, Corse.

Six years later my uncle saved my life again, when I crashed into my second hypoglycemic coma, on the final leg of an intense three-month long sailing experience, during which “balance” was a concept that only applied to the boat -not to my sugar levels. I woke up after a night of partying, ready to set sail from Bonifacio, in South Corse, to Italy. I asked, “What’s the course today?” and I fell to the floor as if I were a 170lbs rag doll. Again my uncle, with the help of a friend of mine, brought me back. Four hours after I came to, we were sailing in the middle of the Mediterranean sea with gail force winds. (Please do not try this at home.)

On the other end of the spectrum, the opposite experience to a hypoglycemic coma happened to me when I was 13 or 14 years old. At the time my sister and I were living with my father and suddenly my blood glucose levels started to be crazy high. We immediately tighten control over my food intake, but that did nothing. We gradually increased insulin, the higher the dosage the more terrified my father was of a sudden hypoglycemia that would’ve shot me back into another coma. But weeks kept going by, insulin kept increasing and sugar levels kept rising uncontrollably. It was maddening.

At the end of his rope, my father decided it must’ve been my teenage hormones kicking in and surrendered. He called the hospital, the Inselspital, in Bern, Switzerland, where they had been following me since inception.

When we got to the hospital and explained the situation, the doctors didn’t have much to say, other than (in a thick Swiss/German accent), “Ve haf to keep him here. Ve vill keep obzerfing and testing him until ve fint vhat iz happening.”

I remember my father’s face washing over with terror. His worst nightmare was going to come true, much sooner than he expected, and he’d see his son deteriorate and succumb to diabetes. He asked, in a shaky voice, “My son has school, how long do you think we have to be here?” When what he wanted to know was, “Is this it? Is this how I’ll lose my son?”

One of the doctors answered, “Ve do not know.” And I interjected, “I don’t care how long it takes, I won’t leave until you fix it.” Then to my dad, “You and mom can go home, I’m good here. I’ll be fine.”

“I won’t leave until you fix it.” Inselspital, Bern, Switzerland.

My positivity and determination helped everyone, including myself. My parents would alternate visiting every other week. I spent most of the time alone. The nurses were sweet. I think I had a crush on one of them, she had bright green eyes. I was given a special permit to take walks outside the hospital. I remember the clean and orderly streets, flanked by flowers and trees. The cold air, the homes and architecture, very different from Italy. The smells, the trams, the rhythm of the Swiss German language. It was the first time, since birth, that I was surrounded by an ocean of words that I didn’t understand. I never felt scared. I felt curious, and often lonely.

But instead of focusing on the solitude, I looked around and I’d find things I liked. A tree. A girl. The color of the sky. The feeling of the fresh air. Something different and unusual that caught my eye. Anything. When my father asked, “How are you?” I only told him about all the things I liked about being there, and he looked at me with a visible dose of admiration and said, “Sei bravo a fare buon viso a cattivo gioco.” (“You’re good. You put a good face on a bad game.”)

I had been at the hospital for four weeks, or maybe more. I had lost a lot of weight due to smaller food portions and the incapacity of the body to metabolize food given the runaway blood glucose levels. My parents were beginning to lose hope. Until one evening I called the nurse and asked for a new vial of insulin since the one I was using from home had run out. She gave me one. I took the shot, and in no time I was in hypoglycemia.

I don’t think a hypoglycemia was ever more celebrated than the one I had then, in the history of hypoglycemia. For the first time in months insulin had finally had an effect on my body and my blood glucose levels came down! It felt like it was everyone’s birthday. We thought of making that day a family holiday. We wanted to send thank you cards, but we didn’t know to whom. My mother and father shared something that for a moment felt uncomfortably close to happiness and gratitude. And then we dared ask, “What happened?” And the doctors said, “Apparently ze batch of inzulin you vere uzing vaz defectiff. Vhen you changet it viz one of ourz, it all vent back to normal.”

Nowadays, people are well aware of the possibility of insulin being/going bad, but back then, I guess, it was a novelty and it threw us all for a major loop.

In my teens, I didn’t like smoking, even though I tried, in a flawed attempt to emulate my father. I didn’t understand what people liked about beer. I had no curiosity for alcohol in general. I had no desire for drugs. I already was super sensitive, to begin with. I was already sticking a needle in my body every day. Every hypoglycemia was a trip and some of them were an out-of-body experience. I didn’t need to spend money to buy substances, I basically had a built-in system for magnifying life’s experience or taking a break from it.

Prepping for the Laser Jr. National Championship.

The only thing that pushed the envelope during my teen years was sailing and some life experiences. The doctors said, “You know, with diabetes you can’t do what everyone else does. You shouldn’t do risky sports, and you should never be alone.” I nodded and I thought, “Not if I’m prepared.”

So I became a solo sailor, among other things. I was in the Italian National Junior Sailing Team for Laser, one of the most intense Olympic classes. I built a water-proof, small storage unit on the boat where I could always easily reach for sugar, snacks, Glucagon and my testing unit. I sailed with friends (on their boats) who knew I had diabetes.

When I turned seventeen, I backpacked across the USA, alone. My mother objected loudly to the experience, but my father countered, “He’s got more sense than the two of us together. Let him go.”  There was a girl in San Francisco I desperately wanted to see. I created the trip as a cool excuse to “stop by and say hello.” When I got there she was with someone else and my heart broke. So I came back.

Training for “La Cinquecento”

When I was eighteen I sailed one of the most intense regattas in the Adriatic sea, maybe in the Mediterranean too, La Cinquecento. Five hundred miles, double-handed, no auto-pilot allowed (if you’re not a sailor, it’s a lot of work, a lot of stress, hardly any sleep for the best part of a week). My friend and I sailed a 55 footer (the same I had sailed from Sweden). He was fully aware of what to do in case of hypoglycemia, the boat was fully supplied with Glucagon and all kinds of diabetes (and medical) emergency supplies. We finished sixth over a fleet of over seventy boats, many of which didn’t finish due to the severe weather conditions we found. We got a trophy for being the youngest team of the race.

Hats off and thank you to my father for trusting me with the capacity to take the adventure. Granted, he had coordinated with the local aviation force to immediately dispatch a helicopter to come rescue us in case of a Mayday, anywhere during the regatta. But we can catalogue that under “good parenting.” I will always be infinitely grateful to my parents for trusting me, allowing me to experience life and follow my bliss.

Then, my father committed suicide, I graduated summa cum laude in something that has little to do with my spirit, and I entered my twenties with a roar of rebellion, anger, confusion and hunger for answers. And all of it culminated in a key turning point that created the beginning of the rest of my life.

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• The above post is also published exclusively by permission on ami-diabetic.com.