Clinic

One foot at a time.

After I left the hospital, my doctor referred me to a specialized clinic that met monthly in Leeds, a short bus ride from where I lived in Headingley. I entered a large room with a few people in chairs and wheelchairs. Light filtered through frosted glass windows. The group leader invited each person to report on their experience since the last meeting. I was 23. Everyone there looked ancient. And why all the wheelchairs?

One woman reported the results of her morning urine tests. Most were in the low range. That was good. She was missing a foot. Several of the others were missing feet, I realized. Hence, the wheel chairs.

When it was my turn to speak, I reported my test results with dates, since I’d left the hospital. I had made them up. It was a requirement of attending the clinic, and to look convincing, I’d written some in pen and some in pencil. I never went back. It was the missing limbs. Is a foot a limb? I looked it up. A foot is a terminal portion of a limb which bears weight and allows locomotion.

Memory is funny. I felt I didn’t belong. Surely, people my age were at another meeting, and this was a mixup. Another meeting where everyone had two feet. I’m not sure I knew enough about the disease to connect the amputations to diabetes, but I must have. It was as if I could catch this complication by proximity. Out of sight—the thing that wasn’t visible—out of mind.

Looking back, the others there probably weren’t that old. They were certainly younger than my age now, 74, because, at the time I was diagnosed in 1973, few people lived beyond their 60s. They looked to me like they didn’t have that long to go. I thought, I’m on my own with this.

Since that time, I never joined a community of diabetics. I’ve never volunteered to do a 5K run to raise money for diabetes research. I did volunteer for the DCCT study, but that never included a group experience. In the early years of the study, there were events where we got together, but I didn’t feel I belonged socially to my condition at my monthly and later annual visits to the study center first in New York City, then in San Diego, and then in New York again. It was just me and the coordinator who talked and who examined me and accompanied me to specialists for whatever test du jour they were requiring. There are approximately 1400 other volunteers. We’ve never met. Maybe here, writing the weekly stack piece on type-1, I’m inviting readers to form a community with me.

Being in the study changed my sense of self—that was the true means of transformation. Up until my dad died in 2009, he would call me on Sundays and say, “How are you in yourself, son?” I would say, “I’m fine, Dad,” although I didn’t know what he was asking, and I didn’t know what I was answering.

List

I think about type-1 diabetes every 20 minutes.

I like to show people my insulin pump and sensor.

Sometimes, in short, sharp moments, I hate thinking about it at all.

I don’t like contributing to medical waste.

I will probably live longer than anyone expected.

I have contributed over a million data points to medical science.

I have no more control over how this data enters the world than I did about contracting the disease.

The possibility of future complications is always a dice throw away.

Sometimes, I’m angry without knowing that I am. In this way, I think I am like everyone else.

I like being a cyborg.

I don’t experience a difference between a low blood sugar and an LSD trip.

To me, low blood sugars and cosmic consciousness are the same thing.

Because I wear several technologies and because they are inserted into my body, I think and feel through them.

I think my mind and body are the same thing.

I’m not looking for a cure.

I rely on others more than I want to.

I don’t like the time it takes for my sensor to recharge because for two hours I am floating outside the spaceship like Frank in 2001 a Space Odyssey.

I feel no shame in having a chronic condition. What I feel may be closer to pride.

I do not consider myself ill.

I would like to pee less often than I do.

I don’t like the words bolus, basal, and catheter. They remind me of insect anatomy.

I appreciate everyone who’s helped me when I couldn’t help myself.

I rarely think complications will affect me.

I hope I will die of something else.

I sometimes think, nostalgically, about glass syringes and steel needles.

I wish I’d kept hold of all the devices I’ve used over the years. It’s possible they discarded me.

I want to live longer than the researchers who are studying me.

When, occasionally these days, I test my blood sugar with a glucometer, I like seeing that round blob of blood at the end of my finger.

I once visited the first vial of insulin made by Banting and Best in the London Science Museum.

I feel something close to enjoyment when I read the instruction manuals sent with each new technological device.

I will also never have an external pancreas made of machine parts.

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Welcome to new readers and subscribers!

This is post number eight. I’ve had a good start, it feels, and I’m very grateful to everyone who’s supporting my new Substack, EVERY TWENTY MINUTES. In each post, I will be writing through the experience of chronic illness and type-1 diabetes, although not always directly about these topics. I may be more than one person, but all of them have my condition.

There are three links at the bottom of my post: “like,” “comment,” and “share.” Please engage with my stack so the algorithm will get to know me. I also would love to hear your comments about the posts.