Two years ago, I was called before the audience at an International Diabetes Center Seminar. My accomplishment? I’ve had diabetes for thirty years.
I felt very awkward. Being a young, blond graduate student, my awkwardness intensified when two elderly, white-haired men joined me on stage. I guess they had survived thirty years of diabetes, too. It was an embarrassing contrast.
I assumed they had gotten diabetes as adults and were on oral medication. I’ve had it since childhood and owed my life to multiple, daily insulin injections.
Looking at the filled auditorium, I wondered, “Am I standing here being rewarded with an IDC inscribed pen because I managed to stay alive for the past thirty years? I’ve avoided going complete ly blind, with some close calls, and I am still plagued with side effects from the laser treatments on my eyes. Is this pen an adequate testament to my will to survive? Or does it just trivialize my life? They have no idea what I’ve been through.”
The saccharin moderator began to chirp, “And you remember years ago having to use urine do tests with test tubes and eye droppers to check your sugar levels?” I turned to her and glared. She bub bled and chattered in response to my stare. She handed us our pens and cheerily told us we could use them to record our blood sugar levels. Thanks a lot. I’ll be sure to do that now.
By Karen Lebeau
The whole thing was insensitive contrary to my usual high impression of the International Diabetes Center. I took my pen, hurried back to my seat and started to analyze my anger.
As a child, I had hated those urine tests. In fact, I even hated the color yellow for many years. Using the eye dropper, you had to put drops of urine with drops of water into a test tube. You dropped a tablet into the solution. Then it fizzed and boiled and eventually changed color. Blue was good meaning negative sugar present. Green was okay. And orange meant that you were really bad.
One always feels judged by the test result. Even today, I’ve noticed in myself and in other diabetics that we don’t write down the high numbers when our blood sugars are off. At least now we can take our own blood samples and use meters which easily and accurately measure blood sugar levels. (Those urine tests were incredibly inaccurate.)
I was diagnosed with diabetes when I was seven years old. We had been driving from Minnesota back to North Carolina and my frequent requests to stop at gas stations worried my parents.
I will always remember when the doctor told my mother what the problem was. They didn’t bother to tell me, even though I was in the same room. I watched my mother burst into tears.
I often think that I must have been a new challenge for that military hospital. So little was known about diabetes at that time as compared to now.
Doctors at the International Diabetes Center will say that if there was a good time in history to have diabetes, it would be now. I guess it’s true. All of the advanced technology and understanding of the disease, as well as its effect on one’s psychology and family dynamics, make it much easier to deal with.
When I went through a week-long seminar at the IDC in 1990, I wished that such a program would have been available to my family back in the 1960s.
Unbeknownst to me, my parents were planning to divorce when I was diagnosed. The doctor told them not to because it would make my diabetes worse. So they stayed together.
My father was physically abusive to my mother and particularly to my oldest brother. My brother has scars on his back. My other brother still bears emotional and psychological scars.
Also unbeknownst to me until recent years, both brothers began to blame me and my getting diabetes for all of the family’s problems. Now I understand why they resent ed me and why they were so hostile throughout the years.
Psychologists at the IDC today explain that it’s common in dysfunctional families to make a scape goat out of the person with the chronic illness. I wish we had known that back then so we could have gotten help.
My oldest brother has been in therapy and now realizes that I am not the source of the family’s problems. It’s nice to be vindicated. He and I have become very close recently and I love him dearly.
My other brother? Well, he’s still clutching onto his past. He’s angry, hateful, and still blaming. We have not spoken for many years.
I am always startled whenever I look at one photograph taken of me after I was diagnosed. I see the eyes and the burdens of an ancient woman in a little girl’s body.
Becoming ill at that time made me ask an essential philosophical question. “Why do the innocent suffer?” I pondered that question along with an earlier question my friends and I discussed when we rode our trikes, “What kind of paradise would earth be if Adam and Eve HADN’T eaten the apple?”
When I was eight, we moved to Minnesota while my father took assignments in Vietnam and then at Camp Pendleton.
By the time I was twelve, my father had planned his escape. The last time I saw him, he asked me to forgive him for what he was going to do. I couldn’t answer him.
He left Camp Pendleton, took an early retirement from the Marines and moved to Okinawa. We had no idea where he was. He had vanished. Without his allotment check, the bottom dropped out of our finances and we were forced to go on welfare.
In the midst of this, I had an insulin reaction while ice skating. I fell on the ice and suffered temporary amnesia and a brain concussion. I was in the hospital for a month and had missed three months of school because I was still sick. I spent a lot of time having brain wave and other tests to try to figure out what was wrong. The doctors thought I had petite mal seizures. That is, seizures that were not severe.
A friend of the family, an elderly lady who was a medium, visited me in the hospital one day. She told me about reincarnation and that I was paying back karmic debts through my suffering. It made perfect sense. From then on, I determined to greet physical difficulties with joy, knowing that my endurance of the condition would bring resolution.
I realized later that it is not that easy. Some people who claimed to be friends have tried to make me feel guilty and condemned me for what they thought must have been horrible deeds in some other existence. I could counter that I had merely taken on some of their bad karma so they would not have had to be born as frogs – this has become essential. One can call that Zen.
When I left the hospital, I began to see a chiropractor who told me that my illness was primarily due to a pinched nerve in my neck. I was off all of my medications within a few weeks.
I was excited to be entering into new vistas in healing and the spirit. Pursuing wisdom and truth became my theme in life.
Finding solace in the spirit became a great comfort when I was assailed with physical problems. Finding real purpose became my escape.
I also needed that inner resolve when contending with insensitive people. People who, when hearing I had diabetes, they would respond: “Gee, you don’t look like a diabetic.” Or some friend of the family who I didn’t know from Adam would come up to me and the first thing out of their mouth was: “How is your diabetes?,” as if that were the central mark of my identity, of who I am.
How am I supposed to respond to such a personal question from someone I don’t know? “It’s fine. How is your hernia?”
I still find myself reacting to a well-meaning friend, who, instead of asking me how I am, first asks how my blood sugars are.
Other people’s reactions to my having diabetes were hostile. In junior high school, one classmate made it his mission to inform me that people like me (diabetics) should not be allowed to live. In high school, when I was participating in an ecology club, a member from Zero Population Growth came up to me and asked: “Do you know how many people we are keeping alive today with insulin?,” as if that were a heinous crime.
I often think of the words of the Russian artist and scholar, Nicholas Roerich: “Blessed be the obstacles, through them we grow.”
As I entered high school, my health deteriorated, while my interest in other philosophies and cultures intensified.
At fifteen. I took painting class es at the Minneapolis School of Art and Design. One of the assignments was to copy a painting. So I copied a Japanese rendition of the Hindu goddess Lakshmi, the goddess of beauty, which I found in a book.
I liked to wander over to the Minneapolis Institute of Arts next door and discovered their Asian art collection. I was fascinated by the paintings, especially the Chinese landscape. The Institute only had a few of them, but in the gift shop there were tiny books filled with these paintings. I bought several of them and fell in love with Chinese landscape paintings. There was something very subtle in them. almost other-worldly, and I felt a sense of peace while looking at them.
A year later. I obtained a copy of the Taoist classic, the Tao Te Ching, and was excited to have the philosophical background for the paintings that so attracted me,
The same year. I became interested in Southern Praying Mantis kung fu. This was the time David Carradine’s Kung Fu began on tele vision.
I studied Southern Praying Mantis in downtown Minneapolis and was intrigued by this system which uses the opponent’s energy against himself. It was not a rigid, power against power (and ego against ego) art form, but one that demanded calmness and flexibility to be effective. I liked this system of self-protection which had Taoist philosophy as its basis. I felt at home.
By the time I graduated from high school, I was completely enamored with Chinese culture. I thought it would be great to be able to read the Tao Te Ching in the original, so I majored in Chinese language when I started college.
My studies were often interrupt ed with health problems. My diabetes was often in poor control. Accurate means of testing blood sugars had not been developed yet. I look back and don’t know how I made it as my blood sugars must have been very high most of the time. I felt very ill on a daily basis. Nevertheless, I yearned to go to Taiwan and really immerse myself in Chinese culture and studies.
The wisdom of Chinese philosophy attracted me because it is practical and applicable to daily life. It’s not like Western philosophy, which seems to construct reality through its labyrinth of intellectual definitions of what is real. Instead, one should let reality reveal itself to the individual; a transfer of wisdom to the heart.
It was intense living in Taiwan from 1980 to 1982, but I loved being there. I will always be grateful for friends who showed me the heart of Chinese culture: a classical landscape painter who was steeped in Zen and Taoist thought, a Buddhist nun who taught me mantras and invited me to share meals with her fellow nuns and monks, and an acupuncturist devoted to Kuan Yin (The Buddhist goddess of mercy) who would never let me pay her for treatments.
And one of my favorite places was the Palace Museum. I could stand before a number of huge land scape paintings and just soak it all in.
The best landscapes were monochrome; black ink on white silk. Towering mountains that seem to pierce into ethereal realms is an essential theme. Rising mists pay tribute to their power.
Usually some body of water, perhaps a stream winding through a forest, outlines the mountain base. There’s an occasional hut or temple peeking out amongst the trees.
Now you have to strain your eyes. In the corner, there’s a man travelling with an oxcart. He is dwarfed, almost drowned out, by nature’s omnipotence and beauty. Ah, now things are in proper perspective. The point of Chinese painting is not the result itself, but the creative process; the state of consciousness the master experiences as he paints. It’s a meditation. And the elation the master experienced from his meditation is anchored in the brush strokes of his painting.
When I view a Chinese land scape painting, I trace the brush strokes with the fingers of the heart and mind..
It’s like Longfellow’s lines:
Lives of great men all remind us We can make our lives sublime, And, departing, leave behind us Footprints on the sands of time; Footprints, that perhaps another, Sailing o’er life’s solemn main, A forlorn and shipwrecked brother Seeing, shall take heart again.
So, that’s why I always feel a sense of peace after gazing at a great Chinese landscape painting. Instead of following footprints, I follow monochrome brush strokes.
I made some poor assumptions before I moved to Taiwan. I assumed I would be able to get the type of insulin I needed there. They didn’t have it. The only thing I could find was some inferior stuff from Switzerland that had already expired by the time I got a hold of it.
A retina specialist happened to be visiting Taiwan, so my doctor arranged for him to check my eyes. He discovered some serious retinopathy that required immediate laser treatments.
This was the beginning of a four-year period in which I had to undergo a number of laser treatments at UCLA’s Jules Stein Eye Institute. If I hadn’t learned it before, I learned it during that time to never take anything in life for granted.
While my eyes have stabilized and I don’t have to worry about going blind, I still have problems. The laser damaged my reading vision. I had been a crack proofread er before, but now when I read, the letters appear to be cut up. So it slows me down. It also damaged my peripheral and night vision.
I also have scar tissue in one eye that hemorrhages. It seems to get set off when I’ve overtaxed myself and get stressed out. I can always tell when it’s happening. It looks like black ink being shot into a glass of water. The lines of ink keep their form for moments and then spread out. Sometimes, there’s also a red splotch. It goes away in about a month. While it’s irritating. it’s not threatening overall. At least I have my vision and I am very grateful for that.
I don’t feel that diabetes is central to my real identity, but it is a means that has goaded me to dis cover who I really am. It’s a physical challenge that I deal with. It has molded me, guided me, humbled me, taught me. Sometimes, it’s just a real nuisance,
It has been the grain of sand that, in irritating the oyster, forced it to create a pearl. A Pearl of Wisdom