Good Like This - By Peter Arpesella
I have now reviewed Peter's excellent novel Good like this in the reviews section of ami-diabetic.com.
Read it here Good Like This by Peter Arpesella
Peter Arpesella, actor, writer, author of the upcoming novel "Good Like This" has had type 1 diabetes since he was 7 years of age. We discover how he was diagnosed and just how it has affected his busy lifestyle
Part 2 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 hypoglycemias, 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. My mother and I glanced at each other for a second and we instinctively agreed that the pill would’ve resolved absolutely nothing.
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 left functioning, I kept repeating, “It’s okay, Mom. 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, renowned heart surgeon, 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.” (“It’s 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.
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.
My uncle saved my life another time, six years later, 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 of Bern 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 when 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.”
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 that, 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 hypoglycemias. 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 everybody’s birthday, at the same time. 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 defectif. Vhen you changet it vith 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.
I had very lucid and controlled teen years, and I went crazy in my twenties.
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.
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 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 Lasers, 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.
When I was eighteen I sailed one of the most intense regattas in the Adriatic sea, maybe in the Mediterranean too. 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 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 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 an 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 both my father and mother 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.
In this first Blog entry, Peter tells us about the early years of his life leading up to being diagnosed and how he coped during the early stages.
This is what I remember.
My parents fighting, my sister and I hiding crouched at the top of the stairs, watching my father chasing after my mother downstairs, she screaming at him. Words children should never hear. Most of all, an energy children shouldn’t experience from their parents. Energy of tensions and fear, spewed in the other’s face through the fangs of hatred. Or maybe something that’s better not to be experienced just by children like the child I was.
My sister and I glance at each other. A fear and pain so deep, like a snare clenching my stomach, solar plexus and pancreas all in a ball, turning it into a pulp and yanking it out of my body.
I got mumps. My bed broke. I’m sure this has absolutely no importance in the grand scheme of things, but, for some reason, its image is hatched in my memory. The mattress was on the floor, surrounded by the bed frame, in the middle of the room. From the floor level, where I spent days on the mattress fighting the virus and its fever, my room felt bigger, and I felt lonelier. I liked when my mother came by to apply a black paste behind my ears. It was supposed to help decrease the inflammation. She and my dad were worried and that distracted them from the tension and anger toward each other. I liked my mother’s attention, not that she didn’t pay any attention to me normally. But in these moments her attention was free, without requests, I didn’t have to do anything. I just had to be there, on my broken bed, in the middle of the room.
Then they left. They went on a vacation, I guess to try and reconcile their differences. But, Acapulco fell way short compared to the work that a solid therapist could’ve done for both of them. My sister and I stayed with my grandparent. Upon their return, my grandma said to my parents, “Chicco pees a lot, I mean, a LOT.” (Chicco was my childhood nickname, it’s pronounced Kee-kko.)
Next thing I remember, I’m in a hospital bed in Imola, Italy. I’m diagnosed with pancreatitis. My father commutes back and forth between Rimini and Imola, to work and be close to me. My mother is worried and she is always with me. What Acapulco couldn’t do, my pancreatitis seemed to have accomplished in an instant. It wiped out their tension and differences to a blank slate.
And then I was diagnosed with Diabetes Mellitus (as it was referred to then) I was seven years old and obviously had no idea what it was. They told me, “It’s a disease that will be with you... for the rest of your life.” And I thought, “Okay.” And that’s really all I thought.
I wasn’t worried, because I was focused on this miracle that was happening right in front of my eyes, in the little hospital room in Imola. My mother and father were together, around my bed, and there was no fighting. It actually felt that they were supporting each other, for an instant. And that made me happy.
But it lasted an instant, because then what I saw in my mother’s and father’s eyes was a film of tremendous yet muted pain, loss, a sense of failure and desperation that I didn’t know how to describe back then. It was mayhem, like an atomic bomb that exploded inside each one of them with the volume on mute. The only thing I could compare it to was that snare that grabbed my solar plexus when I heard them fight. And I immediately felt responsible for their pain.
Back then type 1 diabetes was considered similar to a 30-40 year death sentence. Instead of a new lease of life, it was like a life mortgage. You were given 4 decades of life that you had to pay back as time went by, payments getting steeper and steeper, until your system failed and you gave your life back. Now, we know this is not true at all. With the right awareness and management, one can live a long and healthy life, like anyone else. But this wasn’t the case then, and my parents looked like I had been given a death sentence.
Yet, they managed to be absolutely great with me and for this I will always admire them and be grateful. They never made me feel like I was sick, or "less than", not normal, or that I would’ve lived less than anyone else. And, to my merit, I never felt like that was the case, to begin with. I always felt like, “Okay, I have this thing and I’ll take care of it.”
No one that we knew in our family, immediate or distant, had diabetes. I always felt that the emotional component played a huge role in what we could only guess could've been a very distant genetic predisposition in my body. But we didn’t worry much about “Why?” We focused on “What now?” I investigated and meditated about the why’s later in my life, but not at this time.
As soon as we got back home, my parents got a nurse who’d come to give me the insulin injections every day. After the first week, as she was about to push the needle into my leg, I grabbed her hand, took the syringe and said, “I’m going to have to do this all my life, I might as well start now.” And from that day on I always gave myself my own shots and became very active in taking care of myself.
Sugar levels were tested through urine, in a sequence of tests, tablets, vials and colorful results that made me feel like a scientist each time I had to pee. My father buried his pain and sense of personal failure into every possible book he could put his eyes on. He wanted to understand this thing called diabetes, wanted to know all the alternate solutions, investigate all researches around the world, find the best specialists, hoping to provide me with the best assistance possible and trying to wrangle his pain to a more manageable level. For several years I would tell him my sugar levels and he would tell me how much insulin to take. Even when he moved out of the house and my parents separated, we kept doing this, it was our tie, what kept us connected.
He found the best hospital around at the time, the Inselspital, in Bern, Switzerland (http://www.insel.ch/en/). I went there once a year for my first seven years. I still remember the smells, the feeling of the hallways and the beds, the walks I took in the city of Bern, and how I felt when my mother and father came to visit me every day. They were very good there. The doctors explained to us that the worst thing we could do was to keep it a secret and treat it like “a bad thing.” And for that, I’ll always thank them.
My mother immediately changed the way the entire family ate to align with my new nutrition regimen. There was a food scale in the kitchen, a big one, one you’d find in a butcher shop, something that had to be reckoned with. My food plan and calories exchange table was posted on the wall and we all referred to it. My younger sister thought I was already getting too much attention, so she didn’t particularly care for it. But she always respected the fact that I had “this thing” and that it was real and needed to be taken care of.
Nutrition for diabetes is basically a balanced and healthy plan, so nobody in the family objected to it. Plus, if they wanted something that I was better off not eating, they would still eat it, but it wasn’t often and nobody made a big deal about any of it. Back then there were none of the healthy, sugar free alternatives that we are lucky to have today. Not even chewing gum. When I wanted a piece, my mother would chew it first, and pass it on to me when the sugar was gone.
For Christmas we had Panettone, the typical Italian sweet/candied bread, but I didn’t eat it, unless I was in hypoglycaemia. I missed chocolate, although I had already distanced myself from it because it wasn’t good for my liver. Hypoglycaemia was the time when I could eat what I usually couldn’t, if I wanted to. which I often did, and I relished every second of it. I loved fruit, so I ate a lot of it when I could. I don’t have specific memories about the first hypoglycemic experience but I remember the feeling. It was a feeling of “the energy being vacuumed out of my body,” like a “force” pushing me down. My father was super worried about it. We kept a sugar jar on my nightstand and I had sugar cubes with me all the time in a little pouch. I still remember the taste of white sugar dissolving in my mouth during hypoglycemia.
So a day at a time, a urine analysis at a time, a ‘hypo’ at a time, a shot at a time, a mouthful at a time, I learned to stay connected to and take care of myself. Through diabetes I got more in touch with myself than I probably would have otherwise. But the path didn’t turn out to be linear and mechanical. It became much more colourful, dangerous and, with hindsight, entertaining. But this is for the next blog...
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