1971 B.D. – Last photo (before diabetes) with my mother
2007 A.D – 35 years (after diabetes), with my supportive other half in work and life
Which part to unplug? iport, insulin & meter or my work, purpose & contribution?
The cold and blue reality…
…and the work I do: teacher, advocate, writer, speaker
A few months ago I interviewed a young woman who had type 1 diabetes, and then she didn’t, and then she did again. She was “cured” of diabetes for a time through two islet cell transplants. She had an infusion of perky insulin-producing islet cells, which meant that after taking insulin for almost twenty years she didn’t have to take it anymore. Unfortunately, after 18 months the cells began to fail and she was back on insulin.
When we spoke she had listed herself on the pancreas transplant list to get back what she called the “freedom” in her life, that of being insulin-free. I thought it extreme to undergo the knife in a risky procedure where you’d have to take auto-immune suppressant drugs the rest of your life and the transplanted pancreas would only be good for about 10-15 years, if lucky. She, on the other hand, had difficulty imagining how I live relatively harmoniously with my diabetes. And, she posed the question to me, “Would you give up your diabetes if you could?”
Before I go there I need to give you a little more background. I interviewed this woman several months ago. Then when I released my new book, The ABCs Of Loving Yourself With Diabetes, thinking she might profit from many of the lessons it contains, I emailed her a note. She sent me this email in return, “FYI – I have taken myself off the transplant list for the time being. After meeting you – I decided to give it a shot being diabetic again. It is not always easy – ups and downs (as you know) but I am officially diabetic again.”
I was stunned frankly because at the time of our interview she had said, “If a new pancreas gives me only 5 years of insulin-independence I will take it. Five years of reversing complications makes the risk worth it to me, to be free.” Yet now she was telling me she had reversed her decision to get a new pancreas.
Before the islet cell transplants, this woman suffered from severe hypoglycemic unawareness – she couldn’t feel when her blood sugar was dangerously low. She had countless episodes in the last ten years of nearly falling into a coma; it could happen walking to work, driving a car, while in a meeting or lying in bed.
While the islet cell transplants didn’t keep her insulin-free in the end, they did return her warning symptoms of low blood sugar. “Since the islet cell transplants,” she said, “my husband has not had to wake me up in the middle of the night to see if I’m still alive. He used to do that every single night.” So for her, the islet cell transplants created a dramatic increase in her quality of life. Of course I could understand the decision to have that done. But now that she gets the warning symptoms of low blood sugar and is like the rest of us ordinary type 1s on insulin, was a pancreas transplant worth it? There’s the risk, and when you think about it, as of course I began to, who would you be without your diabetes? If you’ve had it a long time, like me it’s probably shaped your habits and become part of your identity. Early on in our talk she was adamant that the freedom of being insulin-free was worth the risk of a pancreas transplant. How giving up diabetes affects identity, we probed a little later.
She got type 1 diabetes as a teen and grew up in a house where she was not fussed over and so became hugely independent, responsible, hard-working, earnest and a perfectionist at a very early age. It serves her now working toward partnership at a prestigious Manhattan law firm. In fact, at thirty she has all the earmarks of a hard-driving, intelligent, ambitious fast-tracker. Sitting in an office high atop Manhattan, I felt utterly out of place in my opposite lay-back researcher and journalist mode, and faintly amused as she checked her blackberry every ten minutes. She was well-thread and somewhat officious. But there was also a little-girl quality, a kindness in her quick apology for checking her emails and an openness I wouldn’t have expected.
She gave me two hours of her time that morning, precious time, and it was toward the end that she told me she’d placed herself on the pancreas transplant list. At that point I asked, “Since you now get symptoms of low blood sugar why go through this surgery?” She said, “At least I could say I did what I could to be free of this disease. There’s something about being free from diabetes that gives you the courage to try again. I also want to be part of the research, to be able to speak about it and show kids that being-insulin free is possible. Since I was 11, when I asked the nurse, “Will I have to take shots for the rest of my life? and she said, “Yes, diabetes is incurable,” I thought, I’m going to prove the doctors wrong someday.”
Then she asked me, “Would you try to become insulin-free if you could?” Interesting question. I don’t suffer from hypoglycemic unawareness so I wouldn’t be a candidate for the islet cell transplant, but if I did I would have made the same choice to do it as she did, that’s a no-brainer. However, if my diabetes then came back as hers did, along with the warning signs of low blood sugar, would I go further to be diabetes-free? “No,” I said, “I wouldn’t have a pancreas transplant. It’s not worth the risk to me and the short shelf life.” And then I thought further: What would it mean to give up my diabetes?
A fellow A1c Champion told me last year if they could take away her diabetes she would not do it. She gets too much pleasure and sense of worth from her work now helping others with diabetes. Would I give up my diabetes? It’s a fantastic notion to one day not have diabetes anymore. To eat whatever I want, whenever I want or not at all. To not take shots or finger pricks. To not consider if I’m walking today. All kinds of thoughts tumbled into my head. Those were all pluses, but I also thought I would fear gaining weight if I didn’t have a built in reason to watch what I eat and exercise the way I do. My diabetes is now my work, I’d be giving that up. Then there are the friends I’ve made because of it. To be just like everyone else, no longer special from hefting this extra burden and feeling oh, so, virtuous. What would that be like?
“When I listen to you,” she said, “I hear that you’re resolved with this disease. You say, “This is what my life is and I have learned to navigate this way. It’s interesting for me to hear your perspective, it makes me happy to hear someone can do this.” I knew she meant it, her voice became softer, slower, and I could see her thinking about a similar possibility for herself.
She also told me toward the end of our talk that diabetes had also given her something, “It’s so funny because I want to get rid of it so badly,” she said, “but it’s who I am too. It’s a hard disease but it’s changed me for the better I think. I wouldn’t be such a good person had I not had it. As much as it’s been an enemy it’s also been a friend. I don’t think I would have accomplished all that I’ve accomplished. I often say diabetics are typically more motivated, capable and amazing, because they have to overcome so much to achieve what they achieve, it makes one a better person.
“I’m wondering,” she continued, “if you would want to experience being free from the disease or if the disease has become such a part of you that you would miss it in some way? This happened to the first transplant patient at my hospital. He just let the new cells die. It was like he lost himself when the disease was gone. The disease was who he was and he couldn’t deal when he didn’t have it. I wonder,” she continued, “if in my own life I had made the disease part of me more, maybe I’d be better capable of dealing with it. When I was younger I was embarrassed having diabetes because it meant I wasn’t perfect. I didn’t want to admit it even to myself. But you probably can’t understand why I feel this way about a transplant.”
I said it was hard for me, and then I gave her my answer to her question, Would I give up my diabetes? “I don’t know,” I said. I suppose if you tied me to the train tracks and made me say “yes” or “no” before the train arrived, I’d give you a better answer, but for now that’s my answer. I don’t think of myself like the young man in the hospital she described who couldn’t let his identity as a diabetic go. I’m just not sure if the choice were really available what I would do. I can imagine my list of pros and cons might be of pretty similar length.
In any case, when this woman’s email crossed my inbox not so long ago and she told me she had taken herself off the pancreas transplant list, I was very moved that she found something in me and how I live inspiring enough for her to re-think her decision. I don’t pretend to know what’s best for her nor flatter myself that I alone was her motivation. I sensed although she presented a firm front that she was struggling with her decision when we spoke. But if I gave her a snapshot of life with diabetes where one can find peace, then I’m grateful.
Would you give up your diabetes? Your knee jerk reaction is likely “yes.” But when you think through it you might find a very intricate web of emotions that reveal just how much a part of you it has become. Anyway, something to think about, as I hope this blog always offers you. It would be nice to find out in a year how she feels about her decision. In the meantime, I’d love to hear what your decision would be and why.