Movies, Type 1 diabetes and Real Life don’t often match up

There are a lot of challenges we face living with Type 1 diabetes in a world addicted to simple answers and sensationalism. Living with the condition is mostly manageable, if challenging. Living with the image of the condition as portrayed in movies, books and T.V. adds to our daily challenges, as this is where the misleading, erroneous and dangerous public perceptions of us are formed and  disseminated.

Steel Magnolias, which was a popular movie and play in the late 1980s depicting relationships amongst a group of women in a small Louisiana town, contains a portrayal of a woman living with T1D that made a big contribution to the stigmatization and exclusion of people living with this medical condition, particularly women of childbearing age, on the basis that they could not possibly live normal lives and that it was reckless and irresponsible to try.

The screenplay was written by the brother of a woman who had died from complications of diabetes. Nonetheless, it is riddled with inaccuracies and misinformation and perpetuates the myth that people with diabetes are weak, irresponsible and doomed to an early death if they try to do ‘normal’ things like having children. Quite simply, T1D is used in the story for its dramatic effect and it is exaggerated and vilified to increase the emotional impact of the narrative, in typical Hollywood style. This aspect of the narrative is milked for all its potential tear-jerking effect.

In 1989, when the movie came out, I was working as a Bay St. lawyer and trying to get pregnant with my first child. I had been living with T1D for 16 years at that point, and had not let it stand in the way of moving away from my small hometown, getting an education and launching a successful legal career. I had been married for 3 years, and we decided to try for a baby. Knowing that at the ripe old age of 29, I was already considered higher risk for a pregnancy, and after 16 years of T1D, that risk was increased, I was still keen on taking a careful and well-planned approach to reproducing. I was enthusiastically supported in this endeavour by my medical team, including my endocrinologist, my family doctor and my ob/gyn, all of whom had a significant amount of experience with women with T1D having successful pregnancies.

This movie did not help my situation at work or in society when I disclosed to people that I was pregnant and living with T1D. In fact, it made it very difficult, because it added an additional source of external stress at a time when I least needed it. It made my friends, colleagues and family fear for me at an unwarranted level, and some to consider me irresponsible for trying to have a child.

In fact, the pernicious effects of this misleading image of living with T1D drove me further into the closet than I had ever been and kept me there for many years.

I realize that the story of the T1D woman in Steel Magnolias is a narrative device used to showcase and emphasize the strength and endurance of the relationships of the other women in the play, but I and many other women with T1D were stigmatized by the portrayal of that character. The story should come with a warning or a disclaimer at both the beginning and end of it. Something to the effect of:

“Although this story is based on actual events, the accuracy of the information and portrayal concerning women with T1D has been subject to considerable poetic license and dramatization and does not in any way represent a true picture of most such women, who are, in fact, quite capable of living normal and productive lives which often include successful pregnancies and challenging careers.”

(Photo and  text © Lynda Covello, 2015. All rights reserved. )

Music Heals

In late 2007, I was diagnosed with depression. I had some trouble accepting the diagnosis, because the way I saw it, with everything that was going on in my life at that time, I would be crazy not to be bummed out and upset by it. But the diagnostic questionnaires they give you to determine such things indicated that I was depressed in a major, clinically relevant way. I felt completely burnt out.

Just what I needed. First, Type 1 Diabetes, and now this. It really felt like more than I could deal with. I was having trouble keeping my blood sugars under control because of some highly stressful events that had been going on for more than a year, and this felt like a kick in the head when I was already on the ground.

My GP benched me. By that I mean that she strongly recommended that I take at least three, probably six months off work and focus on taking care of myself, both physically and mentally. I was in the kind of job where there was no one to cover for me if I took a leave – they would have to replace me if I was gone for more than a couple of weeks. I felt indispensable and overwhelmed at the same time. I had not yet learned that no one is indispensable, and that I could not keep putting everyone else’s needs ahead of my own, both at work and at home.

So I made a very difficult call to my boss and explained the situation to him. He was supportive, but to me, it felt like I was a failure. I had worked so hard since my diagnosis at age 14 to keep T1D from interfering with my life and my ability to function at a high level professionally was a cornerstone of my identity. This was an admission that I was not ‘normal’ – my diabetes was pulling me down and this diagnosis of depression threatened to pull me right under. I was weak and I hated being weak. I needed help and I hated needing help. Suddenly, I was a sick person instead of a highly efficient, multi-tasking super-mom career woman.

I spent a week or so downloading tasks, projects and information to the team that I had built at my job. I had 5 people reporting to me and I felt that I was letting them down by pushing everything off my plate onto theirs and disappearing for an extended period. They were supportive and concerned, and sounded a little fearful when I spoke with them. Would I be okay? I honestly didn’t know, but I tried to reassure them.

The first few weeks of my medical leave were the worst. I felt empty and exhausted. I cried a lot. Felt useless. Felt sorry for myself. Hated my weakness at feeling sorry for myself. I got out of bed only to go to medical and therapy appointments. I withdrew from my friends and family. My dog, a 10-month old Siberian Husky, was the only one who could get me out of the house for non-medical trips. His joie de vivre was irresistible, and he needed exercise. I was the only one home during the day, and so he decided that we would go out for regular walks.

A few months before all of this, I had joined a jam session club that got together on Friday nights to play and sing rock and pop songs from the 60’s to the 90’s – the soundtrack of my youth. I had been a singer in my teens and early twenties, performing with garage bands and then pick-up bands at university and law school, but had given up music to become practical and successful. With a busy career and then a family, I didn’t have time to be in bands anymore. Then I found this group that welcomed me to come out and just sing whenever I could, no public performances, no audiences, just a bunch of musicians with day jobs playing together for fun.

Of all the things I missed when I took my med leave, I found I missed this the most. So I got out of bed Friday afternoons, showered, dressed, and headed out to a jam session. This was a big part of what healed me. Music. Community. Collaboration. Art.

Apparently, the medical community is beginning to agree with me:

( © Lynda Covello, 2015. All rights reserved. )

Does the world really need another blog?

(Photo ©  Peggy Lampotang,  text © Lynda Covello, 2015. All rights reserved. )

Probably not. Yet here I go. I’ve decided to write this blog to collect my thoughts on life and living and to consolidate some of the other writing I’m doing as I navigate the transition from keeping my thoughts to myself or only writing privately, to sharing them and being in conversation with others. I know that I have enjoyed reading other people’s blogs, have learned from them or reflected upon them, and I’m hoping that you enjoy mine. But if you don’t, that’s okay. Just stop reading.

Still here? Okay. A lot of what I have been writing in the past year or so has been inspired by my experiences as a patient ‘voice’ in the Type 1 diabetes community. I’ve been living with T1D for a long time – 41 years now – and there is a very good chance it will be with me until I die. Although it influences me and has shaped my life in important ways, it does not define me. This blog will not shy away from talking about T1D and how it impacts my life, but neither will it be only, or even primarily, about that. There is so much more to me and my life than just how I manage my chronic medical condition. If anything, I have a greater appreciation for the things life can bring me, a hunger for living and experiencing as much as I can in the best way that I can, than I did prior to my diagnosis. So there’s gonna be a lot of talk about life, art, music, family, animals, nature, literature, and so on and so on. This will not be a how-to-live-better advice column, or a whipping post for the difficulties of living with an incurable medical condition. All you will get are my musings and thoughts about my experiences and the things going on around me.

So, to begin.

I started writing non-fiction again in the summer of 2013, after a transformative experience with the T1 Diabetes Think Tank Network, a group of people using the arts in innovative ways to improve communication between Type 1 patients and their healthcare providers. After many years of keeping my medical condition mostly under wraps, and not speaking publicly about it, I found this community of people made me feel that it was safe and not just selfish, but actually helpful to others, to talk about it. So I wrote a couple of short pieces that first appeared on their website: I reproduce them here just to give some context about how this started