Coming Out

(Photo © Peggy Lampotang, text © Lynda Covello, 2013. All rights reserved. )

First posted on August 12, 2013 on www.patientcommando.com.

So, after 40 years of following the first rule of T1D Club — Don’t talk about T1D —  and disseminating the information that I live with this condition on a need-to-know basis only, this has been an emotionally challenging week for me. ‘Coming out’ as a person living with T1D in a very public way, using my August 14 gig as a vehicle to end the secrecy and raise awareness feels terrifying.

What will people think of me now? What will the reaction be? The reason I went underground in the first place was to avoid dealing with people’s adverse reactions to finding out:

The uneducated, unsophisticated, unsolicited and dangerous healthcare advice (“Don’t eat anything with gluten”; “Stop eating any carbohydrates”; “Take (choose one: garlic/vitamin E/Omega 3/ St. John’s Wort) supplements and you won’t need insulin”; “You aren’t allowed to have sugar, so I’m not going to give you that orange juice you just asked me for, even if you say you are having an insulin reaction”; and so on, ad nauseum);

The fear and exclusion: (“Lynda can’t come to the sleepover because she might die in the night and spoil the party”; “I (teacher) can’t possibly take Lynda on the field trip; I have 20 teenagers to watch and I’m not a doctor”; “You are diabetic? Oh, sorry, we already (choose one: filled the position/rented the apartment)”;

I want to say to the world: We are here. We walk among you, undetected and overachieving because we have to work hard to be ‘normal’. But we are tough. And smart. And tough and smart beats ‘normal’ any day. You don’t know our reality, don’t understand what it’s like to be like us. So just let us be. Just let us be and watch what we can achieve. We will surprise you.

STILL STANDING ON MY ORIGINAL TWO FEET.

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

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.

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: www.t1thinktank.com. I reproduce them here just to give some context about how this started