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.
