By Shelly Ridenour
SEPTEMBER 20, 1999:
Sweet Invisible Body: Reflections on a Life With Diabetes by Lisa Roney (Henry Holt & Co.) 288 pages, $23.95
The most recent encounter was about a month ago, in the women's room at a teeth-achingly weekend-trendy Bucktown restaurant. I was standing at the sink, drawing a pre-dinner cocktail of insulin from two bottles, when a young woman walked in, dramatically clutched her hand to her BCBG-clad breast and sighed, "Oh, I could never do that!"
"No, no, never. I can't stand needles."
"You'd do it or die," I shrugged, having heard it all before.
It's a scene from my own life that's replayed itself a handful of times since my diagnosis with diabetes mellitus, aka Type I, aka juvenile diabetes, nearly a decade ago. Right -- like I love needles. And so I got a great laugh from reading nearly the exact same encounter in Lisa Roney's new memoir, "Sweet Invisible Body: Reflections on a Life With Diabetes."
I have never before read a personal account of living with my disease; have never even really known anyone else with whom to compare stories. A book like this is inevitably going to be read in search of comfort, identity, validation. Yes, yes, yes to the talk of common symptoms (weight loss, excessive thirst and frequent urination, lethargy), the daily dealings with syringes and temperature-sensitive medicines and blood-sugar monitors, the temptation of sugar, the conflicts of insulin schedules and school schedules, the need to balance diabetic demands and the demands of work or friendship or love.
But, like such satisfying memoirs as Marya Hornbacher's "Wasted" (anorexia), Susanna Kaysen's "Girl, Interrupted" (mental illness) and Marion Winik's "First Comes Love" (tragic romance), Roney's writing also makes this an intriguing read for those not dealing with the disease; first and foremost a good storyteller, she neither fishes for sympathy nor puts on a fake brave front. Her careful medical explanations are simple enough to show to all the people who actually still think diabetes is caused by too much sugar (oh yeah, they're out there), while her anecdotes cast a revealing light on what is so often a misunderstood, even underestimated, illness.
"The American Diabetes Association is fond of trotting out Mary Tyler Moore, our one enduring symbol in the public sphere," Roney reminds. And Mar looks great. Too great, maybe. Unlike so many other chronic illnesses, ours is not ugly, at least not for a long time'diabetes does not cause our hair to fall out, does not twist our limbs, does not put us right in a wheelchair or cause us to tremble.
"When you have a disease that no one can see, you are alone with it in a peculiar way: the more obviously ill and handicapped may be rejected out of hand, but with diabetes you are accepted, to the extent that you can 'pass,'" she writes. "What this creates is a division of self, the 'abnormal' hidden within the 'normal,' the body primed to betray its secrets, the rejections delayed but looming."
Roney looks at the complications of dealing with diabetes'what, how and when you eat'in ways that my doctors and parents never discuss; she explains how learning to "cheat" (i.e. forgo lunch for the rare delight that is a Snickers) is necessary for mental and physical survival, how the obsessive measuring and counting of fat content is reminiscent of the compulsive patterns of anorexia and bulimia. The untold way the disease effects the psyche as well as the body: "Perhaps my illness only gives me a retrospective excuse for a personality I would have had no matter what," Roney writes, explaining how she has fought against the injustice of her disease by sticking up for abused animals and shunned schoolmates, cleaning up the environment and volunteering for a variety of causes. "My family and friends and I called it everything else: stubbornness, anti-authoritarianism, feminism, sexual freedom, love troubles, political outrage, intellectual independence, man-hating, experimentation, selfishness, workaholism, perfectionism, when, really, I was just trying to find a socially acceptable way not to fit in."
Being a "difficult women"'can I blame this on my diabetes? Being hard-headed and willful, outspoken and fiercely independent, cynical and dark-humored, these things I have long attributed to a onetime need to prove I wasn't just a little girl in a workplace of men, the fact that my single mother raised a strong daughter, competitiveness and my role as the bossy older sister'could this really be a result of my disease? And, if so, would anyone believe me? "As I grew up, the official medical word was that I could do anything I wanted to do with my life," Roney writes. "Well, except to become an airline pilot, bus driver, or any other kind of employee in control of large equipment or public vehicles. A military career was also likely out of the question." And, indeed, Roney tells how she gave up her intended career in the graphic arts for one as a writer because of fear of eventual blindness caused by diabetes'a claim that is both shocking and infuriating, partly because it sounds like an excuse for someone who was perhaps intimidated and unsure about her career choice, partly because there is an all-too-real practicality about the decision.
Roney's story is all the more interesting because she is a successful, single, smart woman who came of age in the late-seventies, striving to prove to those around her that, like MTM, she was going to make it after all, and on her own.
"Once when I worried about the dangers of nighttime hypoglycemia because I was thinking of living alone, my friend William said 'That would be like me saying I don't want to live alone in an apartment where the bedroom window is high up because I'm short and if the place caught on fire, I wouldn't be able to get out as easily as a tall person'" she writes.
"I wanted to ask him, How many times has your house caught on fire? But I let it go. Life is a struggle for everyone, much more so for many than for me. Besides, if I talked about my burden, I would also imply a heavier burden on those around me. It only takes one or two rejections of your need to make you afraid of asking, no matter how many helpful people you've encountered."
This relates to the ongoing, largely internal conflict of trust for diabetics: the need to be independent and in charge of my own care sometimes head-butts the need for someone I can depend on and trust. I think of my great-grandmother, who developed the more-common Type II diabetes late in life and who never administered her own shots; instead, my grandmother or one of my great-aunts, who by this time had their own families to raise, left their homes each day to tend to her, to boil the syringe (oh, the advances we've made) and actually inject her. What a nightmare; and yet, no matter how fierce the streak of independence, there is the undeniable yearning for someone to trust'not to depend on, but to literally trust with my life.
"It is true that some people use illness to trap others... Even though I am not that way, the fear that I could be always haunts me... It is even worse where lovers are concerned," Roney writes. "Imagine the instant implications of my potential dependence, the relatively strict schedule of my meals, the occasional interruptions of romance due to low blood sugar, my restless sleep habits, and the plain fact that my body calls attention to its imperfections all the time."
And that's where Roney and I differ. She admits to having been ashamed of her body, despite the fact that she goes on and on about the relative invisibility of the disease. Insulin injections are given into subcutaneous areas; basically, fatty areas just below the skin, in the thigh, upper arm, stomach or buttocks. I have never tried to give myself a shot in the ass (though I have a diabetic friend who loves having his girlfriend inject him there), and I've never been able to follow through with my stomach. But since I have been giving myself shots for nearly a decade now, I can see the scar tissue-like results in my legs and arms. Vanity does play a part in my concerns, but shame does not. Admittedly, when I decided to wear a sleeveless dress to my friends' wedding this spring, I stopped giving myself injections in my arms a month before, desiring not to be covered with purple, green and yellow bruises. Most of the time, though, I do not even notice the marks until someone else points them out. Even then, I am certainly not embarrassed; that would be like washing my hair out of shame'I wash it because I like the way it makes me feel.
Still, Roney is an inspiration, a learning experience for what I can look forward to and dread, what to prepare for, what to do and certainly what not to do'even if there is a disagreeable morbidity in her statement, "How fantastical to know what will be the [likely] cause of one's death when one is twelve!" Rather, I'll take heed in her scrappy attitude about reconciling her disease with her daily life: "Deciding when I could compromise was the hard part, and it became involved in just about every decision I had to make. My recalcitrance has been a way of saying, all these years, 'Why me?' What did I do to deserve diabetes? And if the answer was 'nothing,' then what other injustices could I refuse in a way I couldn't refuse the illness? Plenty."
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