Uncategorized – Not Dead Yet Me

July 19, 2015July 19, 2015

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.”

April 1, 2015July 19, 2015

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:

http://www.theglobeandmail.com/life/health-and-fitness/health-advisor/the-benefits-of-music-therapy-help-orchestrate-its-rise-in-patient-care/article23669818/

March 26, 2015July 19, 2015

Winter Must End

Okay, Winter, it’s time to let go.

We had our good times —

Bright days with sun-diamonds on the white breast of the land,

Brilliant star-lit nights with the snowy landscape reflecting the moon’s glow.

Wild runs through the knee-deep white, whooping our joy to the heavens,

Precise turns carved with sharp skiis gliding us downhill –

But it’s time to go now.

You are not what you once were, young and fresh and clean.

You’re just a dirty old man now,

And you need to leave.

March 23, 2015July 19, 2015

STILL STANDING ON MY ORIGINAL TWO FEET.

This was the writing that opened the floodgates, first published in July 2013 on www.patientcommando.com. I’m obviously older and wiser now…

August 29 – My Coma Day

August 29, 2013, is the 40th anniversary of my Coma Day — the day I spent in a coma while my doctors tried to figure out what was wrong with me. Turned out it was Type 1 Diabetes, and they were able to bring me back to consciousness the next day. Every year on that day, I celebrate another year of surviving and thriving in spite of all the dire predictions I was given by the medical community during my slow, painful progress back to a point where I could be released from hospital (I think it was a few months, but it was so long ago, and I was so young, I think I have skipped over that in my memory to a great degree). In a nutshell, it went something like this:

You will never:

live past 40

have kids

be able to participate in sports

be healthy

be normal

be able to manage a challenging job

You will:.

have your feet and legs amputated

lose kidney function and need transplants and dialysis

have heart disease and multiple heart attacks

go blind

spend a lot of time in hospital

die young

…and so on….

As this milestone approaches, I am inspired to look back on the past 40 years, and do a little tally.

Dead by 40: So…I’m 54 and still here.

Never Have Kids: I have 2 healthy grown sons and a wonderful husband to whom I have been married for over 25 years.

No Sports: I have been alpine skiing, swimming, horseback riding, cycling and hiking for most of my life, with no plans to stop anytime soon. I also love big dogs who need lots of exercise. I have a Siberian Husky and we walk for about 2 hours every day. I also ride my horse as often as my work schedule permits. I love Yoga, swimming and Tai Chi. I take the stairs instead of the elevator whenever I can, and I would rather walk than drive to run my errands.

No Challenging Career: I have 3 university degrees: an Honours Bachelor of Arts specializing in International Relations, a Bachelor of Laws, and a Master of Laws. I have worked pretty steadily since I graduated from law school the first time, in 1985. I have worked as a Bay Street lawyer, General Counsel for a pharmaceutical company, and an international business consultant, among other things. I also enjoy guest lecturing at law schools and I teach professional business people how to manage intellectual property for business through various industry organizations.

Normal: Okay, what’s normal and who wants to be it, anyway? I love to paint, write, take photographs, and oh, yes, I am a professional jazz vocalist. I have a band and we play in jazz clubs and restaurants. I also have a regular jam session with a bunch of friends every week, where we sing and play rock and pop songs.

Amputations, etc: Umm.. I still have all my original parts and they are all still in good working order. My heart, kidneys, eyes, lungs, liver, etc. all seem to be working just fine. I haven’t been admitted to hospital since I had my youngest son, more than 20 years ago.

And, oh, yes, I’m still standing on my original two feet.

How Did This Happen: All this didn’t happen by accident, and I did not do it alone. I have had the support of my family and friends, and wonderful and dedicated health care providers along the way. And oh yeah, science.

Science: I was lucky to have been born after Charles Best and Fred Banting discovered insulin and how to extract and refine it from cow pancreas. Before that, Type 1 Diabetes was a death sentence. Biotechnology made it possible for me to replace the insulin my body doesn’t make with genetically-engineered human insulin that doesn’t cause the side effects that beef and pork insulin used to. Dedicated research and new technologies have made it possible for me to test my own blood sugar levels wherever I am, multiple times every day so that I can keep track of what’s happening and adjust accordingly, instead of going to the lab once a month for a test that was essentially useless in the day to day management of my condition. A medical device, called a smart insulin pump lets me have constant control over how much insulin I am getting and adjust it to allow for all the other variables that affect my health.

Science and technology have made it possible for me to live the kind of life I want to live, and to have control over my medical condition. Don’t get me wrong, it’s still a lot of work, all day, every day. I still have to keep track of everything I eat and drink, count carbs, adjust insulin for exercise, manage stress, and plan for the unexpected. There is no holiday from diabetes, it is with me wherever I go and whatever I do, and there have been many times when I just wanted to quit.

But the problem is this: if you quit, you die.

So….still standing on my original two feet and, as the Monty Python skit goes: ‘Not dead yet.’

Not even close.