Ending the Diabetes Carnival and the Myth that “It’s no Big Deal”

 

When Erin was diagnosed with diabetes last year, we received boundless support from our friends and family.  There were gifts – including tens of stuffed koalas – for Erin and words and deeds of encouragement, support, and hope for us all.  Perhaps the greatest gift was the collection of anecdotes shared with us about people with diabetes living totally normal, happy lives.  Indeed, a strikingly common theme was that, although diabetes sounded bad, and certainly used to be, it was not really such a big deal anymore:  “My uncle has diabetes, and he scuba dives!”  “Bet you didn’t know that Halle Berry is a diabetic!” “Have you heard of the insulin pump?  It’s amazing!”  “B.B. King has diabetes, and he’s still playing the blues . . .” 

 

Such heartening reassurances came like food to the famished – we were shocked, frightened, ignorant, and starved for evidence that the challenges ahead were tractable.  And it did somehow feel nourishing to learn that our daughter joined a club with members as talented as H.G. Wells and Jackie Robinson. 

 

But there is an uglier side to diabetes that is too frequently overlooked or downplayed.  Yes, Wells and Robinson were superhumans of a sort, but it was diabetes that ultimately proved their mortality.  Indeed, Robinson, once the personification of health, died at age 53, sightless and nearly legless. 

 

As much as we’ve appreciated and benefited from the satiating psychic boost that came from our loving friends and earnest acquaintances, a year into this disease has revealed to us a less upbeat truth.  Diabetes is a big deal!

 

Over the last thirteen months, we have filled five, 100-ounce Tide Liquid containers -- the large, hard-plastic jugs, now brimful of a year’s worth of spent insulin syringes, roughly 1200.  These giant orange maracas rattle with each deposit, signaling one more time that Erin’s skin has been pricked, poked, or punctured.  Typically, brave Erin tells us that “it was not bad”; she sometimes even congratulates us on giving “the perfect shot.”   As she clutches a koala and regales us in the finer points of Harry Potter’s adventures, she takes the shot (or administers it to herself) with all the matter-of-fact indifference she can manufacture. Often enough, though, her body jolts slightly and her skin reddens and the discomfort cannot be camouflaged with Griffendor trivia or a wan smile.  And sometimes, like tonight, she cries.  Those shots can hurt. 

 

And for every injection, there is one or more blood test.  Erin’s finger tips, once soft and sensitive, are growing calloused.  Only one year in, Erin sets her finger lancet, the same brand used by B.B. King mind you, at the highest level – ensuring the deepest “poke.”  Still, there are fingers that will no longer dependably produce the “tiny microliter” needed.  And from the four to five lancings per day, Erin’s hands sometimes just ache.

 

Many people think that that’s the worst part of diabetes.  But please understand something:  those daily routines, though unpleasant, are not that big a deal.  Truly, if three injections and four pokes were all there were to it, we wouldn’t be writing this essay right now, and diabetes really would be as easy to live with as most people presume.  It’s the more subtle stuff that makes the disease so baffling and contemptible.  Ours is an entire family devoted to one diabetic’s health, and, even with the best medical advice, equipment, and medicines available, keeping Erin’s blood-sugar levels consistently within a healthy range has been impossible.  Too much of the time, regulating Erin’s insulin feels like playing a carnival game.  That’s the really tough part (and it’s a major reason why all the poking is difficult to bear).

 

 

            Picture the balloon-dart contest.  What could be simpler than bursting a few balloons with pointed darts?  And yet, at the carnival, when most contestants step up with hopes of winning a giant, stuffed, fluorescent bear, they more often than not walk away with nothing, or, at best, a plastic comb.  Managing diabetes feels that way. 

 

            True, we sometimes go a stretch with good blood-sugar numbers – bursting balloons with nearly every toss.  But such streaks are just that, fleeting and often attributable largely to forces beyond our own intent and conduct.  Add any variety to the day – have more or less than “normal” amounts of exercise, for instance, or experience more or less than “usual” amounts of stress – and what worked yesterday is all-but certain to fail today.  

 

Perhaps other kids are different from ours, but terms like “normal” and “usual” have little meaning in those dimensions.  Each day brings its own activities, mealtimes, challenges, worries, appointments, and stresses.   Even if every day were identical, the disease would be fickle and unruly.  Growth spurts, hormonal changes, colds, and illnesses – the stuff of childhood and adolescence – all have a huge effect on a body’s blood-sugar levels and its reaction to insulin. 

 

Many people eventually learn that circus games are rigged.  Experience is an effective, if humbling, teacher.  

Few people ever learn just how hard it is to manage diabetes. In fact, most of us don’t even know what a pancreas does, much less how hard it is to mimic the effect of beta cells in the islets of the pancreas.  (Click here for more information.)  Before Erin’s diabetes, we certainly didn’t.  Why would we?:  when the pancreas works, the human body adjusts automatically to the countless variables that confound the diabetic's efforts to imitate nature.  Diabetics learn all about the pancreas – what it should do, but doesn’t, and how very hard it is to live without – because experience is an effective and humbling teacher. 

 

Diabetes is not just a Midway amusement with only a stuffed Sponge Bob in play.  When Erin’s blood sugars climb or dip unexpectedly, as they too often do, it’s her life – long-term and short-term – that’s in the balance.  “Step right up folks!  Try to win back your child’s health!”  Diabetes is a big deal.

 

The myth that it isn’t a big deal is appealing to many, including us.  Such a belief is far more comforting than is the upsetting news that thirty-five children per day are diagnosed with this mean disease.  Similarly, even for us, it is nicer than believing that there are many times when, despite our very best efforts, we have little control over blood sugars. It’s easier than dwelling on the fact that even in the very short term, Erin could be seriously harmed from blood sugars that are either too high or too low.  It’s preferable to thinking about what the future holds, as Erin hits her teens and her interior and exterior conspire to undo whatever control we manage to gain by then.  It’s better than contemplating the similar sets of difficulties that Erin will face if ever she decides to have children.  It is more pleasant than dwelling on the high chance that Erin will sooner or later experience nerve damage, kidney damage, blindness, limb loss or any of the other possible harmful effects of the disease.  And it is better than pondering the sad fact that Erin, like all children diagnosed with type 1 diabetes, is likely to live approximately fifteen years fewer than the rest of us.   (For more information, check here.) 

 

For all those reasons, we would like not to think too hard about the implications of Erin’s illness and to convince ourselves and our friends that the disease is really “no big deal.”  But the experience of diabetes eliminates that option.  The diabetic and her family must either relinquish the happy myth or suffer the unhappy consequences.   When living with diabetes, the truth comes out.  And experience teaches that diabetes is a big deal. 

 

Several weeks ago, for instance, Ian, Erin, and Emily shared a stomach flu.  It was a nasty bug but nothing unfamiliar to most parents.  Ian and Emily vomited for two days before it grudgingly released them.  But for Erin the bug turned particularly malicious and nearly hospitalized her.  As it was, we were monitoring Erin constantly (checking her blood seven or eight times a day and measuring ketones each time she urinated), conferring with doctors at Children’s Hospital daily by phone, and adjusting her insulin levels again and again in response her body’s mercurial messages.  On those days, the Erin received six to eight finger pokes and as many as six insulin injections, several of them in the middle of the night.  One week later, Erin’s system had still not completely returned to “normal.”   We were doing all we could, though it was difficult not to feel somehow responsible for the results.    

 

At such times, we remind one another that we’re doing everything we know how to do, including consulting with, and following the advice of, the most expert physicians in the country.  It’s a scary reality for any parent that there are bad things that can happen to our children that are neither their fault nor our own.   The game is sometimes rigged.  Those balloons may look like easy targets, but they are underinflated, and the weapons are dull.  We’re slinging blunted darts with distorted dihedrals at nearly impenetrable, moving targets.  We’re pitching hard coins at slippery plates.  We’re tossing tiny rings at swollen bottlenecks.  We’re clambering up pivoting rope ladders.  The games each look easy to the unseasoned observer, but none of them is in practice.  Experience teaches that diabetes is a circus game, cheating its contestants by making the difficult seem simple.  Our story is not unique.  It is, we’ve discovered, the unfortunate norm for those who have dealt directly with the disease.

 

Consider some of the stories we have heard on our journey around America.  Early on, we met Pat and Jay Jemison at a New Orleans RV park.  We learned at the time that Jay was struggling with diabetes and, in an e-mail some weeks later from Pat, she explained Jay’s recent “diabetic crisis” this way:  “His sugar is all over the meter. He is going to see an endocrinologist.  This started 2 days ago. We cannot pinpoint a contributing factor.”  

 

Jay, Pat, & Mickey (the cat)

 

At a Freightliner Service Center in Las Vegas, we spoke with a mechanic named Jesse.  Jesse’s son is 14 and has had diabetes since he was seven.   His son is, Jesse confessed, “getting tired of it all.”  “It’s hard.  Every night when I get home I do it all for him.  He’s working in school and trying to do all the things that his friends do, but it’s too much.  I test his blood and give him his insulin because he’s tired.  And with everything going on in his life, keeping his blood sugars stable isn’t possible.  We worry about his future.”  Jesse then explained that last summer his son had been to a camp for children with diabetes (because “other camps won’t take them”).  “He loved it.  He was around other kids who are also dealing with the disease and it made him feel less alone.  He wants to go again this summer, so we’re going to hold a raffle at our church to send him.”

 

In Palmdale California, through a complex series of coincidences (a story in itself), we came to know another Hanson family (no relation).  Jeff and Debbie Hanson’s twenty-three year old daughter, Tiffany, has struggled with type 1 diabetes for 19 years.   Over dinner, they described to us several of the life-threatening and health-threatening experiences that diabetes threw in their path over the past two decades.  As they explained, “Tiffany’s health was our first priority, and we learned all there was to learn about managing it, but there is so much that is out of our hands.  People don’t realize how difficult this disease is.”   (Indeed, the Hansons have been so frustrated by the difficulty of the disease that they, independent of us, have also devoted themselves to raising awareness about, and support for, the research on a cure at Massachusetts General Hospital.) 

 

Jeff & Debbie Hanson host the Hanson Family

 

A week ago, on our trip between the redwood forests of California and Portland Oregon, we pulled into a rest stop on Interstate 5.  A sign on a tiny travel trailer promised something wonderful:  “Free Coffee.”  Sure enough, we got two cups of refreshing coffee just for the asking.  And we got something better.  We had the opportunity to meet the amazing woman, Barbara, who ran the coffee-trailer.  Barbara, we learned, was giving away coffee and selling snacks in an effort to collect donations, all of which were to be spent on diabetes research and diabetes camps for children.  Why, you might ask, was Barbara (like others at other rest stops around Oregon) spending the better part of her waking hours sitting in a trailer at an interstate rest stop collecting donations for diabetes?  The answer is that she has experienced the disease up close.  Her husband, it turns out, “takes four insulin injections every day on top of other medications and still cannot bring his blood sugar under control.”  She added:  “He’ losing his health.  This is all I can do to help.” 

 

 

Barbara, the Rest Stop Coffee Angel, with Erin

 

Tonight, we pulled into a Flying J’s in Butte, Montana.   After filling up, we parked to regroup briefly.  Right next to us we noticed something we couldn’t believe:  an RV, much like ours, advertising “The Mr. Diabetes Wake Up and Walk Tour.”  A short time later we were having dinner with Andy Mandell (Mr. Diabetes) and his road-coordinator Steve Hopf.  Andy has walked about 5000 miles, and is now about half way through his walk around the perimeter of the United States to raise awareness about a disease that nearly killed him and has taken a major toll on his health.   But Andy keeps taking one step at a time, because he believes that each step helps to make the public a bit more aware of the truth about diabetes and the need to “wake up” and do something about its dangers.

 

Mr. Diabetes Takes a Break from his Walk

 

These are just a few of the many stories we’ve been hearing about life with diabetes.  With virtually every stop we make, we meet someone with a compelling story about how diabetes has touched – no, more like assaulted – them or a loved one.  Indeed, at the RV park we stayed in last night, the owner was recently diagnosed with type 2 diabetes and, several years prior to that had lost her husband to complications from type 1 diabetes.  The stories are coming from every corner of the country and there is a theme common to all of them.  It is a lesson that we are learning the hard way: diabetes is far more difficult than it seems.  It’s like a carnival game, with one important difference:  It’s a big deal.

 

Our goal is not simply to underscore the sad truth of diabetes, but to highlight a more uplifting piece of news.  There is very good reason to hope that a cure is at hand.  As we have described elsewhere on our website, a new technique developed by Dr. Faustman  and her colleagues at MGH has cured the disease in mice and appears likely to do the same in humans.  (Click here for details.)

Please help us end this diabetes carnival as soon as possible by making a tax-deductible donation today to MGH. (One hundred percent of your donation goes directly to MGH’s research.)  Please help all the people throughout this country and the world suffering from diabetes by helping MGH to find a cure.  Please.  It’s a big deal.