Month: May 2008

A soldier in the trenches, me

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Got a lot a livin’ to do

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As an A1c Champion, I am often asked to deliver educational/motivational programs to fellow people with diabetes.

Recently I gave a presentation in Buffalo, N.Y., where I was double-billed with a diabetes educator.  Her speech preceded mine, so I leaned back and listened. And what I heard was a solid forty-five minutes of A1cs, blood pressures, weight control, exercise, portion control, and carb-counting…in short, numbers, zones, and target ranges up the wazoo. Where is the humanity in this, I thought? Where is the patient in this? Where is the acknowledgement of the energy required to slog through each and every day? I saw my purpose–to talk about how we hold diabetes in our lives.

Taking the stage, I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications. The room quieted. I was, they saw, like them: a soldier in the trenches. I saw the landscape they saw; I tramp through the same dark forest; I look for cover when diabetes rains down upon me or drains me out.

“When you’re so busy testing every day,” I said, “reading labels, counting carbs, and calculating, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?” Heads nodded and people leaned forward, turning from silent witnesses into curious, involved participants. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their anguish and struggle.

My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but also on the other side of our experience, where unfortunately many healthcare providers sit. People are dying–literally–to hear their healthcare providers address the emotional issues of living with diabetes and while it’s not providers’ fault, if you don’t live with a chronic illness that greets you every morning unrelenting, on a fundamental level in the messy arena of some messy emotions, many physicians and even educators lack the training to empower us to deal with the psychosocial aspects. 

We, however, are in the business of chronic illness. We have life adjustments to make, and we have precious little help to make them. So here are my recommendations: Learn all you can. Appreciate what you hold dear. Pace your efforts and forgive your mistakes. Keep the vision of your ‘best life’ ever-present. And spend more time doing what you love. While we’re living with diabetes, let’s not short-change the “living” part.

Here is another thought: How about the idea that we are “more than,” rather than “less than”?  After all, we do this whole other job called “managing diabetes.” I think we should be living with our heads held high, showing others the invisible “superhero” cape we wear. Call me crazy, and I’m sure some of you will, but I see a gift in diabetes:  that of a longer, healthier life than I probably would have had without diabetes, if I manage it responsibly.

After the program, people crowded around to thank me, and they were smiling. How often do you imagine someone leaves a diabetes talk with a smile? That’s where I want this blog to take you–to a place where you connect to your heart and spirit, a place where you may see that diabetes can bring greater meaning and purpose into your life. And, yes, there’ll still be room for ranting on the tough days. 

Let’s all cancel diabetes today

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Today is something I just heard about a few weeks ago called ‘Diabetes Alert Day’. Apparently it’s the 20th year the American Diabetes Association has been recognizing this day about alerting people how to prevent type 2 diabetes. 

The reason I became aware of Diabetes Alert Day is because I was asked to give my A1c Champion presentation today as part of a larger diabetes health event  at a hospital in Brooklyn. A week ago I was told the event was canceled. Frankly, I don’t know why but I do wonder why and think it’s a sadstatement that we’re canceling more information getting out there about diabetes. 

I read on Amy Tenderich’s blog, DiabetesMine, this morning that you might want to be your own spokesperson and today tell two people about diabetes. I think that’s a great idea. Here’s another: Since they cancelled Diabetes Alert Day, let’s cancel our diabetes today. 

By that I mean, today do what Dr. William Polonsky, CDE, psychologist and founder of the Behavioral Diabetes Institute advises we should be doing every so often to avoid burn-out – take a “mini-vacation from diabetes.” Put down your fears (that’s my advice), maybe test once less today, have that bagel, and give yourself a break. 

Until we can cancel diabetes for real, I think we have to give ourselves a pink slip every now and then. 

 

Can I introduce you as, “If you don’t take insulin you’ll die?”

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Speaker in CT_2“Thank you for your gift to JDRF and the 2 million people, most around my age, who have type 1 diabetes.”

My husband is a management consultant who lives in Brooklyn and works in Europe. It’s a heck of a commute but somehow we make it work.

Last week he facilitated his first week-long management course in Connecticut, a mere two hours away — Eastern Standard Time and no jet lag. But greater than that, in the world of ‘wonders never cease,’ his course participants, as is the company’s tradition, elected a charity to make a donation to at the end of the course and they chose (all on their own, no coaching from my hubby) Juvenile Diabetes Research Foundation (JDRF).

Now, what was even more remarkable  was not only do I have type 1 diabetes, but one of the other four course leaders has a 17 year old daughter with type 1 diabetes.

Typically a guest speaker is invited the last night of their course to talk about the chosen charity, so it was not a stretch for my husband to call me and ask if I’d come up and fill the role. Knapsack packed, I hopped a train from Grand Central Station and was soon standing in front of twenty executives from ING and five executive management instructors to compress thirty-six years of living with diabetes, and the establishment and achievements of JDRF, into fifteen minutes. Oddly enough this is fun for me; while I may get white knuckles just before showtime, after I’ve gotten my first laugh, which I intend by the way, my knuckles open up and I feel my audience resting in the palm of my hand.

It was easy to draw parallels between the topic of their course, leadership, and the leadership of the impassioned parents of children with diabetes who collectively wrote letters and called senators and created JDRF, now a world class cure-focused research organization. It was easy to liken managing systems in a corporation with managing our systems in diabetes: food, exercise, medicine, stress, illness.

Toward my close, I talked about my own personal passion in my work, helping people develop the emotional resilience to get up each and every day and manage this condition again, and again and again, and how still after 36 years of living with diabetes I have no assurance that Tuesday will go the way Monday did, or Sunday did, or Saturday did. As I spoke those words in particular my voice cracked, tears came and I choked, I choked right there in front of 25 executives. My husband told me later it was a great moment of authenticity and they “got it.”

I’ve spied here and there over the past year of giving presentations, that no matter how much knowledge I possess or how well I speak, diabetes comes with an emotional suitcase, and while I thought I’d only brought a knapsack to Connecticut, that emotional suitcase had accompanied me unnoticed. But it’s also O.K. because it was in opening that suitcase in that room that evening that allowed for a shift in my audience from head to heart.

When the host asked me pre-speech how I wanted to be introduced, before I answered he said, “Is it true if you don’t take insulin you’ll die?” I would have never have thought of that in the moment, but I said, “Yes, actually it is.” He asked, “Can I use that in the introduction?” To which I responded, “Sure, why not?” “O.K., great,”he said laughing, “I’ll bring them down and you bring them up.” A version of good cop/bad cop perhaps, and a brilliant game plan hatched in 60 seconds.

But his question, is it true if you don’t take insulin you’ll die, unknowingly made me feel a little vulnerable and a little heroic, which truthfully I rarely allow myself to feel. So maybe that’s where my tears came from 12 minutes later. In any event, the next day 20 executives went home to neighboring parts of Connecticut, Des Moines, North Dakota, Massachusetts, Atlanta and one to Amsterdam with a little better understanding of what type 1 diabetes is, how invisible this illness is and what all us invisible people are doing all day long managing round-the-clock blood sugars. And I’m pleased to say these executives who overpaid for mugs and hats and theatre tickets to raise money for JDRF raised $2,600 and the company matches half so all tolled almost $4,000. Not bad for a night’s work and a free dinner.

Do you remember when it all began?

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I was really caught short the other day. Spending most of my personal time around diabetics who know the score, I was faced with my neighbor’s mother who had just been put on insulin and was scared witless to give herself a shot. She asked if I would lead her through it so she didn’t make a mistake. She was using an insulin pen, which I do not use, so I had to read the instruction sheet right along with her. In doing so, I realized just how confusing and daunting this can be.

First there was the screwing in of the pen needle. Do you do that while it’s still in its protective plastic case or liberate it first? I still don’t know. Then there was the actual slipping off of the needle cover to expose the slinty steel thread. Then the priming: tap the exposed insulin cartrige a few times – how many is a few times and what exactly are we looking for? Carol was looking for something while I figured this was just about sending any air to the top of the cartridge. But how would she know that? And I saw she took pains to tap the cartridge in a particular way as if tapping otherwise wouldn’t be right. Then you’re instructed to dial a dose of two units to release any air in the cartridge. With this motion one should see a drop of insulin escape from the needle. Well, I did, but Carol didn’t because at that point she told me her vision’s not very good and she wasn’t wearing her reading glasses which would probably help. Oy, I thought, we’re dealing with units of insulin and your vision’s not very good? And being as nervous as you are about this, you’re not wearing glasses? Is this denial?

OK, air test performed and I ask Carol how many units her doctor said she needed to inject. She looked at me confused and said, “Doesn’t it say on the instruction sheet?” Yikes, power outtage of the mind, total disconnect, no apparent understanding that you dose for your needs based on food, exercise, blood sugar count. But I can’t blame Carol. She doesn’t know what she hasn’t been told, or what hasn’t been clearly communicated. Whereupon I see what a major breakdown we have in our medical system. You need to manage this disease, yet probably millions of people with diabetes are walking around with no information, misinformation and totally unprepared to take it on. Hmmm…doesn’t bode well for rising medical costs or the millions who’ll find themselves in hospital beds in years to come, as one diabetes educator expressed to me. So, we held off the injection till Monday when she could ask the doctor how much insulin she was to take.

Monday night I ran down to her apartment to guide her through her first injection. She answered the door in a T-shirt and no pants. I was about to say, “Do you want to put on some pants?” when I realized she was thigh-exposed for her first shot. How foolish of me not to infer this, but then I shoot through stockings, jeans, and usually just tuck up my shirt and go right through my abdomen. Anyway, within 5 minutes I had guided her through her first injection, her shaking hands steadied and she put that pen in that naked thigh like a trooper, hit the button, and because she told me she heard the click, extracted it quickly only for me to see that the dose button had only dialed down from her dose of 8 units to 6. So I instructed she put the needle in her thigh again, click the button fully, wait 5 seconds and then extract. She was loathe to do it, not because it meant sticking herself again, but she’d been clearly told not to use a needle twice. Wow, since I use my syringes a week or two before changing, I saw again the long journey from novice to old-hand. In again we went and out. This time the full dose dispensed. Mazeltov! Success, and she was smiling. Her high pitched shaky voice calmed to a quiet gleeful whisper and a new insulin-dependent diabetic was born.