The Visibility and Invisibility of My Body

11/21/2016 12:08 pm ET
Picture shows my insulin pump, my cell phone which reads my blood sugar level via bluetooth, and my continuous glucose monito
Michal Shapir
Picture shows my insulin pump, my cell phone which reads my blood sugar level via bluetooth, and my continuous glucose monitor.

I remember sitting with my Dad in a hospital waiting room the day I was diagnosed with Diabetes and him telling me, “You will never again put a piece of food in your mouth without thinking about it.” Snacking at parties, that one coca-cola on a hot summer day, the cookie I stole from the jar late at night, behaviors I had for so long taken advantage of, became chores. I now had to measure my cereal and milk at breakfast so I could know just how much insulin I needed in order to eat that meal. I don’t know that I fully registered at the time what my Dad meant, but the phrase was one I wouldn’t soon forget, and I imagine all Diabetics know the implications of what it means. Eating, which had been a joyous and social part of my day, became a task.

I come from a long family of Diabetics and I was never a stranger to the disease. My home growing up was riddled with syringes, blood test strips, insulin vials, and the latest glucose monitor. The same is true now of my apartment except I have added a few accessories (continuous glucose monitor sensors, insulin pump cartridges and infusion sets, etc). To stumble upon what we called as kids a doodah (the little clear plastic cap on the bottom of an insulin syringe) was like finding gold at the end of a rainbow. I remember fondly fighting over who would get my Dad’s dinner doodah each night, who would share that piece of his identity for the evening. And yet, being diagnosed and starting my own journey with Diabetes was something new in and of itself. The doodah was something I could now give away. It forced me to let people into a deeper (and sometimes darker) side of me and I had to decide if I wanted that.

I have not always been open about my illness. I would hide in bathroom stalls behind locked doors to test my blood sugar, I would take injections privately, and I would excuse myself from meetings at work to treat a low blood sugar. Diabetes can be embarrassing, a disease which shouts, “You’re not perfect and your body won’t allow you to be. You are medically flawed and it is the job of the disease to keep you that way.”

Diabetes is about balance. Food makes the blood sugar go up and insulin makes it go down. The goal for a Type 1 Diabetic like me, whose body does not produce insulin, is to manually inject it to counterbalance the food intake. This means knowing how much insulin equals how much food (a number different for each person) and also how sensitive your body is to that insulin (also varying by person). For example, if my normal blood sugar level is 100 mg/dl (the unit of measurement for how much sugar is in your blood cells) and I use one unit of insulin for every 50 mg/dl and my blood sugar is 150 mg/dl, I would take one unit of insulin. It works the same for food. If every ten grams of carbohydrates is one unit of insulin and I eat 100 grams of carbohydrates, I would take 10 units of insulin. So what happens if I test my blood sugar and it is 200 mg/dl and I am going to eat 100 grams of carbohydrates? I would take 12 units of insulin. Then a Diabetic has to account for how stress, illness, exercise, or high fat/protein meals (to name a few) affect the blood sugar. The calculations can feel endless. I have many nights gone to bed with a normal blood sugar just to wake up at 3 o’clock in the morning needing a correction of some sort. My struggle with Diabetes before reaching any of the day-to-day management, though, was always with the sense of shame that my body wasn’t perfect, that I was different from other people.

On the one hand, I grew up surrounded by Diabetics and the paraphernalia that comes with having Diabetes so I felt oddly comfortable with the diagnosis--it didn’t feel foreign to me. I imagine for most people the news is scary and shocking. For me, I initially felt like I was now a part of some elite club only a few family members got to be in—it was exclusive and that felt fun to me. On the other hand, I was now responsible fully for my day-to-day health, something that felt like a deep burden. If I didn’t count my carbs correctly, or if I skipped checking my blood sugar, I might feel sick to the point of throwing up, my vision might blur, I might start shaking uncontrollably or seizing. These are not nicely packaged images of Diabetic life, but they are the reality. Long term repercussions of mismanagement matter too. According to the American Diabetes Association Website:

  • As of 2010, a Diabetic’s risk for having a heart attack was 1.8 times higher than the average healthy American
  • Hospitalization rates for stroke were 1.5 times higher among adults with diagnosed diabetes in 2010.
  • In 2005–2008, of adults with diabetes aged 40 years or older, 4.2 million people had diabetic retinopathy, damage to the small blood vessels in the retina that may result in loss of vision.
  • In 2011, Diabetes was listed as the primary cause of kidney failure in 44% of all new cases and 49,677 people of all ages began treatment for kidney failure due to diabetes.
  • In 2010, about 73,000 non-traumatic lower-limb amputations were performed in adults aged 20 years or older with diagnosed diabetes.

Again, these are not nicely packaged images of the life of a Diabetic, but I share them to illuminate what a newly-diagnosed 11-year-old would be fearful of. I also share this to note, and perhaps more importantly to my overall feelings on having a chronic illness, that a sense of hope for what your life can be is diminished when you find out your body won’t behave the way a healthy body does, or the way you expected it to. It’s not only scary and daunting to manage the day-to-day of this life, but to know that a lot of opportunities you thought you could have might be taken from you.

I hold multiple identities I am proud of. I am gay, I am Jewish, I am Diabetic, and the list goes on. The identities we hold can bear the weight of having life or death moments. Sometimes that means your body actually can’t function the way it needs to in order to remain alive without a little help from medicine. Sometimes that means discrimination and hatred make you the target of violence and crime. My journey to accepting the many parts of me that make up my identity, was long and the roads paved with a lot of hurt, sadness, anger, and more. It’s not easy growing up in a world where you are automatically a sexual minority. It’s not easy being a Jew in a secular world. It’s not easy knowing that sometimes you’re going to wake up in the middle of the night three or four times because your insulin supply is off-balance and your body is fighting the medicine you need. And yet, these moments are integral to growth and development. They are key parts of accepting who you are, coming out, telling people you have pride in the things that make you you, not because you’re perfect, but in fact because you’re not. Who’s to say that perfection has to mean only one thing anyway? For a young gay kid growing up in the 90s, why wouldn’t I have wanted gadgets and gizmos aplenty? Even if they were medical gadgets and gizmos.

I don’t claim to know what it is like for each and every person living with a chronic illness to endure what it truly means to live with that illness. I do know, however, what my journey has been like and how at different points in my life I have dealt with my disease. From shame and embarrassment around not having a body that works well to trial and error with various medications, I have felt deeply, not only the medical and physical effects of my diseased body, but also the social and emotional effects of how it impacts my identity, the people around me, and the larger community of diabetics in the world--with whom I am forever in relationship.

I have come to discover that in the early days of my diagnosis, I wasn’t yet ready to claim the identity of Diabetes and all that comes with it. In the same way I felt when I first discovered I liked men, these parts of me felt shameful and to be dealt with in secret. For many years, I would often skip injection times, eat sweets uninhibited, and not test my blood sugar, thinking I would be fine. Or better yet, I could do this without having to explain to my friends why we had to stop and wait for me to take my shot of insulin before having that nighttime dessert. I became reckless--something I grew out of but something I think says a lot about about illness and my ill identity. I wanted so badly to not have a disease that took up so much time that I self sabotaged my body--punishing my health for something my heart desired. Coming out as Diabetic, in the same way I came out as gay, was empowering--a way to be proud, a way to own my illness, a way to be a more whole and real version of myself, a way to share my own doodah.

And there are days that are hard. Sometimes, I simply fail and I can’t help but take it personally. I tell myself over and over again that I can control this and that if I do the calculations correctly, I can be in my target range, it’s science after all. If I take one unit for every ten grams of carbohydrates and this granola bar is 28 grams of carbs, then I take 2.8 units. But it’s too often that my lack of sleep, or the stress of my day, or the amount of protein/fat in the chicken I had for dinner causes it to skyrocket and it just isn’t a perfect science. What I learn most from this daily routine, both the struggles and the celebrations of a day where I calculate I was in range for more than 75% of the time, is that sometimes life just isn’t a science. Sometimes, we plan and we do our best to make things a certain way, and they just can’t be. Sometimes the finger pricks hurt. Sometimes I insert my insulin pump in a place on my body where the insulin can’t be absorbed properly. Sometimes I need help reaching around my body to put in my continuous glucose monitor sensor. And sometimes none of this happens and everything goes right. Most of all, I have a consciousness around my body that is so specific and detailed, and I pay very close attention to every single unit of insulin I need and the times of day I inject myself, and to every morsel of food that enters my mouth—because they all matter. My life and my health live in those details.

If I subscribe to the notion that Diabetes is an automatic death sentence, then I may as well have given up a long time ago. I spend my days, hours, and minutes, ensuring my body remains alive. A disease that forces you into that type of behavior is not a disease that devalues any one minute of your life. I feel responsible for each and every second because I make them happen. My cause may be Diabetes because my body requires it, but the larger work I am committed to is ensuring that nobody feels a lack of worth because of their identity. Your illness, your way of being in the world, your character, your sexual identity, your religion, your gender, or any other part of you is worth committing yourself to fully because it’s what makes you whole--not fragmented, or imperfect, or broken. It took me a long time to learn that and I am still working on it.

We carry these identities not because they need to be dealt with, but rather because they are human and are inherent to who we are. Our lives depend on the amount of care we give ourselves and the help we ask of others in providing that care. The latter is what creates moments of human connection. We are worth every moment spent asking for, and providing, that care. Diabetes has taught me time and again that I have the strength, the courage, and the will to care for myself and thus provide care in the world for others. At the end of the day, when we learn to create those moments of connection, we are caring for the world at large and the people in it who don’t have the same opportunities, or strength, to do the same.

When I tell people I have Diabetes I am often met with varied responses and reactions. My favorite one to date was from a friend’s older sibling who looked at me, without pause, and said, “You mean Liveabetes?” I laughed, naturally, and then started to think about the implications of what it means to think about chronic illness with that juxtaposition; live and die, life and death. This binary is true not only for people living with Diabetes, but for people living with a host of chronic illnesses. The fear of death looms even if the medical and technological advances have allowed us to stop treating these diseases as death sentences. Living with Diabetes is hard, and it takes a lot of work, but I don’t have to accept from the outset that it is what will take my life earlier than others’. I am grateful for that.

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