I sat down this afternoon at my computer with my highlighted article in my hand, ready to write about a concept new to me about evolution
and body weight and insulin resistance.
But then I opened Facebook, and the JDRF Bay Area had a link to an Op/Ed article written by a former JDRF advocate and published in the San Francisco Chronicle, and I got sidetracked.
It was the headline that hit me wrong.
“Lives Wasted as FDA Stalls on Artificial Pancreas Technology”
Let me say first off that I understand that this author is advocating for funding for research on type one diabetes. I understand that advocacy before Congress requires highly charged vehement pleas, essentially, for money. For that, people have to care about the goal
you have and have to want to help.
But here’s the thing that’s hitting me wrong about the entire article, and a lot of the pleas some of these research and other groups are required to adopt in order to wrestle sufficient funds out of others’ hands. It’s not only the MESSAGE; it’s the tone. They are discussing my disease, you know.
MY life isn’t being wasted. MY diabetes isn’t the “constant, frightening, deceptive and malicious” one this author discusses her daughter lives with every day.
My friends with diabetes aren’t wasting their lives, either: they are nurses, teachers, mothers, scientists, engineers, dieticians, social workers, authors, attorneys, students, photographers, volunteers, artists, and more. They are amazing and normal people who are busy improving their worlds as they live with their diabetes.
If I were waiting around on the latest “breathe into a tube instead of prick your finger” machine, or hoping for a pancreas transplant, or if I spent any time at all hoping for a cure; those things would make me feel like I were wasting my life.
Not one of us will get out of this alive, you know. We don’t get guarantees. We only get the here and the immediate right now today.
Sure, we need to plan and learn and dream and work and play and appreciate and share and do our very best as often as we can—but I for one think we have no time available for wasting.
(I also think that any death due to low blood glucose levels is horrible and think the only thing possibly more terrible is the thought that
someone might say that it was a “wasted” life.)
I’m clearly not the best Drama Queen when it comes to what it takes to live well with diabetes. The author says “every hour of every day, individuals with type 1 diabetes have to balance insulin, food and activity to try to prevent low and high blood sugars, and the devastating and costly complications: seizures, comas, kidney failure, heart disease, blindness and amputations.”
Balance: yes.
Prevent: yes.
Devastating: really?!
Costly: alright; I’ll give her that.
Seizures: haven’t had one.
Comas: haven’t experienced one.
Kidney failure: haven’t had any.
Heart disease: not planning on it.
Blindness: none I can see in my future.
Amputations: ticklish as a schoolgirl.
So who is this lady talking about in her article? What is she telling Congress? Who do the SF Chronicle readers now think I, as a type one diabetic, am? How many of them have I already met?
How many will I run past during Sunday’s marathon through San Francisco?
Will they see me as devastated, tragic, or doomed?
I can’t help but think of Bill Polonsky’s speech starter: Well-[managed] Diabetes is the Leading Cause of… Nothing!
If you’re waiting for the Big Bad Diabetes Wolf to come and get you, you may very well have a very long time to wait. Don’t waste that time.
Go out and get living.
Thank you GIRLFRIEND!!! My teen son has type 1 and he is careful, as am I, to watch over his care and he is learning, and we are rocking and rolling through life, and having fun!! Life’s a beach!!! The only wasted lives here are from the Who’s Teenage Wasteland!
Look. I’ve had type 1 diabetes for over 36 years. I’m not wasting my life, but I’ve had minor complications. I’ve had seizures.
I don’t know to what extent my lack of more serious complications (hate that term, complications) has been the effort I’ve made over the years, and to what extent it’s been dumb luck.
I do resent a headline that can be taken to imply that our lives our wasted, but when I talk to people about diabetes research, and when others are trying to get action in that area, I want to make sure people realize this isn’t just an inconvenience.
People with diabetes, through no fault of their own, lose their sight, lose limbs, lose kidneys. People die.
I don’t even care about the “artificial pancreas.” It’s just a new insulin delivery system, and no system is going to be perfect. And insulin, in addition to keeping most type 1 diabetics alive, kills some of them.
Maybe I’m being dramatic, but it’s not something I do all the time. There is a time for being dramatic. When someone is advocating for a cure, or even just better tools to manage the disease, it’s time to be dramatic.
Have a great run this weekend!
One word…Shocked! Do you honestly believe the author of this article thinks your lives have been a waste? Quite the contrary friends. Like me, I’m almost certain that she applauds you for your positive outlook, the meticulous care you have taken to control your diabetes, and is thankful that you continue to experience good health. As mothers of children with diabetes, we understand that it hasn’t been easy for you, or the people in your lives who have stood by you, stand by you now, and cherish your magnificent, “unwasted” lives every moment of every day.
Please take note that a mere generation ago, if it had not been for scientists, mighty advocates, such as parents, brothers, sisters, and those in the world that are true humanitarians who took “radical”, massive action to find ways to sustain and better the lives of those with diabetes, you, my son, and all with this illness would not be here today. Agreed?
O.k. As I write this article, my mind is whirling about with all the memories, both good and bad, of the past 18+ years of being the mother of a beautiful son who was diagnosed with diabetes at a year and six weeks old, his name is Allen. Yeah, he was just a little guy. It’s been a long road peeps, and I do not regret one moment; neither do I, like any other parent consider one, precious second of his incredible life a waste.
Yet, like all those with diabetes, he has dealt with the ups and downs, the constant burden of checking his blood sugar, always carrying his medical equipment and snacks for lows ecc., wherever he goes; and, like the heroes that you guys are, he has struggled to maintain good health. His big sister, Amy, and myself have had the privilege to stand by his side all his life.
Now scary and malicious? Well I don’t know about malicious, although the fact that high blood sugar molecules which transform into toxic, spiked blood cells that attach themselves to proteins instead of glucose, going on to tear through the kidney walls, renal arteries, vessels behind the eyes, heart muscle…you know the drill. Cause and effect is probably a better way to put it; however, no matter how you slice it, the possible complications of diabetes are devastating, period.
Now let’s take a moment to discuss fear. If the above description of possible complications due to diabetes aren’t scary
enough, let’s delve right into the horrific, earth-shattering world of insulin shock. “Yep, this woman is gonna do some serious drama!” Lol…
For some strange reason, we human beings just love a good, scary story don’t we, and we especially “dig ‘em” when they are based on a true story. Well, here’s one for ya, true as true can be, and yes, very scary… and a little funny too.
Last March I came home from work a little late. Allen was sleeping, and of course I looked in on him. He awoke, looked up at me, smiled and said hello. I asked him how he was doing. He replied, ” I’m great, mom, awesome blood sugars today. Don’t worry, get some rest.” My heart smiled. I went into the living room, flopped down on the couch, too tired to change into my “jammies” and started reading a book, hoping to unwind from a busy night at work. As I was drifting off to sleep, I heard a strange rustling coming from Allen’s room, followed by several loud thumps on the wall. I sprang to life like Flash Gorden! I knew Allen was in full on insulin shock, but nothing could have prepared me for what followed.
I flew through his bedroom door, looking in the cabinet where we keep his emergency Glucagon, but it wasn’t there! Allen must have moved it without telling me…of course at that point asking him where it was wasn’t an option. I dialed 911, put it on speaker phone, yelling “Please help us, insulin shock!”, then repeated our address several times, while grabbing a jar of honey from the kitchen. By that time, he was seizing so violently that the blood vessels in his throat began to rupture. Blood was everywhere, bursting from his mouth and nose. Then, he stopped thrashing around, his body went stiff, then limp. With only the whites of his eyes showing, his lips tuned a purplish blue from lack of oxygen. He moaned and gagged an then stopped breathing completely. Please note> all this happened in a matter of minutes! I had been placing honey on the inside of his cheeks, hoping and praying the glucose would reach his bloodstream and brain in time, but it seemed to have no effect. I was losing him you guys. I cried uncontrollably, begging him to stay with me, telling him I loved him over an over.
Suddenly his eyes began rolling down, looking into mine, but they were empty, as he was still unconscious. I kept on with the honey. His arms and legs began twitching, a few moments passed and suddenly he took a breath. Color rushed back to his face, like it did when he took his first breath of life at birth. Words can’t begin to describe how scary it was to go through that. And worse yet, knowing that if I (or someone) had not been there, he would have died.
Now the funny part. By the time the paramedics got there, he was conscious, very confused; I looked liked a frog from crying so hard, shaking like a leaf…and both of us were covered in blood an honey!!! They looked so shocked, wondering if this was some weird domestic violence case or something. My son’s hair stood straight up like cement, blood covering his face, neck and chest. I had his blood all over me, my hands and face caked with honey…can you just imagine how strange this must have appeared! We can laugh now, but really, it was horrific.
Ok. Just knowing that technology exists that could have prevented the insulin shock in the first place, and possible future episodes…especially at night…knowing that it’s there and not having access to it makes me furious. Big Pharma Baby! It’s no secret that a diabetic is far more “valuable” to this countries bottom line when they are sick and dependent on the medicines, supplies and the rediculously expensive treatments needed for those who have developed complications. And hey, I love my country, but let’s call a spade a spade shall we? Nothing will ever change until WE stand together and make it change! Once upon a time there were no glucometers, various insulins ecc. I hope one day very soon we will be able to say, “Ya know, once upon a time, there were no artificial pancreases, alarm systems ecc.” What a beautiful day that will be.
~Lisa