Thursday, May 4, 2017

Just Say No.

I wanted to be a veterinarian when I grew up. That's what I remember of my career goals before type 1 diabetes - if you could call them that, I was only 5 after all. We got to dress up one day at school and I remember wearing one of my dad's white work shirts with a stethoscope (a real one, as my aunt was in nursing school) around my neck and a box of my stuffed animals in my arms. This loose idea vaguely represented the thing I most wanted to "be" someday; I loved my cat Tiger and when we got Sparky (a.k.a. the Best Dog Ever) a couple of years later my heart was set firmly on my chosen profession.

Diabetes came along then, in the winter of my 12th year. My parents were told by a well-meaning resident at the children's hospital that I shouldn't worry about concepts like career or retirement, since I probably wouldn't live much past 40. Fortunately the endocrinologist on call didn't share such a dim view of my future. It was 1983 and things were changing, he told my parents. If I took care of myself, he said, I'd be just fine. Fortunately I outlived him and the grim limit placed on me 34 years ago. But adulthood proved challenging the minute I went to college.

I was lucky to still be covered on my parents' health insurance since I was a full-time student. But to be a veterinarian meant I couldn't work more than a few hours on campus here and there, so I tried to get experience with a few internships. The end of my college years loomed before me and with it, the prospect of having no health insurance. I had to choose. Find a respectable job with insurance and give up on veterinary school, or take a chance on having no insurance while doing graduate studies (the student union offering wasn't that great, and I'd be paying out of pocket for virtually all my diabetes supplies). I would have to leave my city for grad school so I'd need to work to pay rent, but I wouldn't have enough money to buy test strips or insulin unless my parents helped out. They'd already put me halfway through college so it didn't seem fair to ask for more. So I chose.

I was still lucky; my first jobs had health insurance coverage. In those days there was always a 90-day waiting period so I stocked up like a prepper on supplies. But it wasn't all golden. At one job the insurance carrier threatened to drop me for having diabetes. They eventually backed down, but still denied coverage for more than two bottles of insulin a month. My old doctor heroically championed on my behalf more than once, telling them she would decide how much I needed, not them. Only four test strips per day were covered no matter what (this was in the mid-1990s), so I used the generic drug store meter even though it was less accurate. I never really investigated getting an insulin pump; it seemed hopeless, given the way insurers already treated someone like me. And when I took a job that didn't offer health insurance at all, I amassed a collection of denial letters from Blue Cross, Aetna, Humana and others - because I was "presumed uninsurable" due to type 1 diabetes. My A1Cs, despite all the challenges, were in the 5.9 - 6.2% range, stellar at the time, and I was otherwise completely healthy. But no matter.

My luck still held for a while thanks to living in my home state of Illinois. The Children's Health Insurance Plan, or CHIP, had a high risk pool for people like me - those with 'catastrophic' illnesses like AIDS, cancer, juvenile diabetes and cystic fibrosis - who would never find coverage on their own without a job that offered it. I was grateful the day I received my enrollment card. That feeling quickly turned to shock when I saw my proposed monthly premium: $475.00. For nothing but the coverage itself. My deductible was $5,000.00, which in the late 1990s was amazingly high (and still is for an individual). I had insurance, sure, but it would be October or November of the following year before I actually didn't have to pay for everything. I was doing something I loved, and that I was good at, but following my passion meant paying the price, literally, for my health. For a while I tried to make it work. But it was becoming obvious I'd have to find a job with insurance, regardless of what I actually wanted to do with my life.

There are ways not to work for a living. There was a time when women weren't expected to have a career. I could have filed for unemployment and neglected my health to the point I would qualify for disability coverage. (I know a few 'healthy' people who did just that, unethical as it was.) But I wanted to work and liked having my own little career. I enjoyed having the money to pay my own way, to get along in life without depending on someone. And I liked being a productive member of society. I tutored English for a few years to help people like me to develop job skills. I volunteered at the hospital where I was diagnosed, in part to show kids it was possible to live a 'normal' life with type 1 diabetes. When we moved to Florida and Texas for my husband's job, I went stir crazy for a few weeks until I landed some type of employment. If my body can handle it, I want to keep working as long as I can. I want to contribute, even if I have to compromise by working in a job that might not be the best fit for me.

And it doesn't bother me to pay taxes. I write my property tax check every year for schools even though I don't have children, and I pay the IRS every paycheck to fund a government even though I vehemently disagree with its current leadership, because I'm American and this is how our society functions. But I can't for the life of me figure out why the Affordable Care Act and the protections it offers for people like me are suddenly being yanked away. When the ACA was passed in 2014, I felt safe for the first time. I no longer had to worry about caps, coverage denials and higer costs for no given reason. I could ignore all the negative stigma that so many still have about diabetes. (That I somehow caused my own disease, even though type 1 is an autoimmune disorder with no obvious trigger. That I'm a burden with my higher health care costs, even though insulin and test strip manufacturers make record profits off their products. That I'm less worthy somehow, because my body decided to stop making insulin 34 years ago.) How sad and shameful and un-American these thoughts are.

Now we go back in time to dark days of worry and panic, of feeling like a ship without life boats. It's almost as if the people in charge want me to fail, just so they can survive.

Just say no to repealing the ACA. Tell your Senators. Tell your friends to call. #voteno #saveACA #doc #T1D #dsma

Wednesday, January 13, 2016

Walter Payton and Larry Bird.

It's been sneaking into my nights and early mornings lately. Too frequently for my liking.

Walter Payton.

You see, we all have our number. That moment it flashes on the glucometer screen, you reflexively think of some random word association. Mostly because your brain is hardly working at all, and it gives your wandering, foggy mind something to fix on. A homing beacon. For Kerri, it's Larry Bird, jersey number 33. For me it's legendary Chicago Bear Walter Payton, number 34. And 'Sweetness' was Payton's nickname - how ironic.

As a child raised in Chicago, to me and many others Payton was a magical figure. When the Bears won the Super Bowl in 1986, I was 14 and still new to the world of type 1 diabetes - diagnosed just three years earlier. Not many 34s crossed my brick of a blood glucose meter back then; orange was the new blue (never black) for me most of the time, my early self-care years hampered by primitive instruments and poor habits I denied to everyone, including myself.

Since then newer insulins and better tools mean I see Sweetness occasionally. Lately he's shown up three times in the last week, always unannounced at 4:30 or 5:00 in the morning. I'm not sure if it's good or bad that I've never not woken up when that happens - what's unsettling is how often I have no symptoms besides that uneasy feeling of something being very wrong.

I loved Walter Payton. It broke the city's heart when he died. But I don't want to keep seeing him in the wee small hours of the morning, sneaking past me and flashing that '34' like his famous smile when I'm half awake.

Friday, July 17, 2015

So long, farewell...

Since 2009 the Contour USB has kept of thousands of blood sugar tests, traveled across the country and beyond, and made it a lot easier for me to stay in control of my diabetes. Sadly my insurance no longer covers Bayer supplies, so it's back in time to One Touch. Farewell old friend, maybe in the future we'll be together again...

Monday, March 4, 2013


"My reign is not yet over" (these words were legible in one of these inscriptions); "you live, and my power is complete...Come on, my enemy; we have yet to wrestle for our lives; but many hard and miserable hours must you endure until that period shall arrive." 

-Mary Shelley, Frankenstein; or, The Modern Prometheus

 30 years. For 30 years I have been both the pursuer and the pursued. Chasing highs, chasing lows. Wrestling for my life with the inhumane beast that is type 1 diabetes. I have spent three decades pinning it down by the neck, grabbing its slippery tail as it tries to release itself from my grasp. I have spent nights terrified of its tapping, tapping at my parlor door - the low blood sugar alarm of a meter, the sweaty, half-blind stumblings (or crawlings) to the kitchen for juice. All for a pancreas blasted of life and stitched back together with crude Victorian instruments - the vial and syringe - wrapped in scar tissue and seeming hatred for its host.

And yet. I am still here. Still sighted. Still free of that which stalks from the shadows. For now. For who knows when the ghastly creature, the Monster, shall emerge from the mist to have his final revenge?

"But it is true that I am a wretch. I have murdered the lovely and the helpless; I have strangled the innocent as they slept, and grasped to death his throat who never injured me or any other living thing. I have devoted my creator, the select specimen of all that is worthy of love and admiration among men, to misery; I have pursued him even to that irremediable ruin."

30 years. Would that some modern Prometheus soon steals the fire of a cure and carry it to us, the children with diabetes now grown. So that another 30 years do not pass lashed to the rock, the eagle of fear daily gnawing at my insides.

Prometheus depicted in a sculpture by Nicolas-S├ębastien Adam, 1762 (Louvre)

Tuesday, January 8, 2013


It's year 30 of my diabetes and I'm still here. Trying... be healthier... eat better (like this perfect concoction)... snack better (manna from heaven, it's only 15g carb per serving)... identify myself more clearly (rocking an old school ID)...

Because I want to be here to mark year 40. And 50. And 60. And maybe, just maybe, get that Joslin 75-year medal. And I try to remember these words when a string of 250+ mg/dL numbers leaps from my meter, or when I'm shaking from a low...

“All I can say is just try to pay attention. You can’t do everything right, or I couldn’t,” she said. “But it’s a winning battle; it’s not a losing battle. Because each day, I find, when you go to bed and you lay there and you think ‘well, what did I do wrong today?’ and I think ‘well, you did something right because you’re still here.’” ~ Barbara Wagler

Monday, April 9, 2012

I Want You To See This

Marc Chagall, America Windows (1977), Art Institute of Chicago. Photos taken by author.

I used to play a little game with myself in the early years of having diabetes. When I brushed my hair or took a shower, I used to close my eyes and try to do everything without peeking. I told myself that if I went blind, at least I could dress and bathe myself so I wouldn't be embarrassed by needing help. Of course it was easy to open my eyes a few minutes later and puzzle at the mismatched earrings or crooked lipstick. It seemed like a distant fate that would happen to someone else.

In my 29th year of diabetes I sweat the annual retina exam like the rest of my DOC brethren. Will I have problems? Is this how it starts? I kicked myself good and hard this year because my A1C is up a full percentage point from last spring (7.4%). In Florida the strong sunlight - as well as the unforgiving glare of the fluorescent lights in my office - have my eyes in a tizzy some days. The floaters I've had for years seem darker and stick out like exclamation points. On the train to my doctor's office, I held my breath and hoped, just like I do every year.

How would I remember brown? I thought, sitting in the exam chair. Would I think of the touch of my niece's kitten-soft hair? When I feel the sun on my skin, will yellow or orange come to mind? What about red? I laughed to myself because the first thing that came to mind was the Diet Coke logo. Green would be a visual memory of my husband's eyes, and kelly green the color of my mom's. I could smell steel grey and black on the train, the ozone odor in the subway immediately recalling miles of smooth metal. For blue, there were too many shades. I thought of the lake in winter and the ocean at all times, the constant wash of wave and wind sliding up and down a scale from navy to cerulean to indigo. I thought of the flat slate stillness of the lake in winter, and the implacable blue-black ocean depths, or the neon aqua in the shallows. I always tell myself that I could live without my eyesight, really, as long as I could hear. Music has always been my friend and would be my great solace in this solicitude. I could even walk with my great friends, my books, again in the dark thanks to audio versions. It wouldn't be the end of the world. The drops took effect, and soon I went in. Moments passed.

"No evidence of diabetes," he said, putting the Star Trek headgear aside. I let out a sigh. He looked at me and nodded. He knows, I've been seeing him for over 15 years. "You're good."

After the exam I took a walk to the Art Institute of Chicago, since it's only a few blocks from his office. The bright blue sky and benevolent spring sunshine warmed my soul. Once again I came out of the darkness into the light. I vowed to get my A1C back down, to exercise and eat better. To be grateful for my relatively good health. And I went inside to see an old friend - a stained glass work by Marc Chagall that hadn't been on display in years. Kids like me grew up in Chicago going to the AI on school trips, standing in the glow of America Windows not knowing but somehow understanding that we were surrounded by such great beauty. I stood in the hallway squinting, my dilated retinas taking in every shape and shade of their glorious, happy light. I reflected on the gift of sight at noon on Good Friday, and said a silent prayer.

And this is what I want burned into my retina, sighted or blind, when I think of the color blue.

Tuesday, February 28, 2012

29. 10.

29 years have passed. I am a little burned out these days, but still here. A world of people like me exists in the ether, and I know I am not alone. Even on days when I don't think about it that much, it's still a comfort.

My other journey comes to a milestone year - it has been a solid decade since I last spoke to my mom. Did she ever exist? I catch myself thinking sometimes. The current of life swept me from her shore and caught me up in its turbulence. Some happy and some sad. But I always look for that coastline no matter how far at sea I believe myself to be. I think of the future she never saw and the lives she hasn't been here to share. And yet I know she is at peace.

29. 10. So long, yet so far to go...