I am a TAB.
This blog is dedicated to families that are living with chronic medical conditions and their extended support groups. Therefore, it is appropriate that I tell you a bit about my experience to provide context for my perspective on healthcare, the United States healthcare system and health information technology.
Borrowing from a popular television commercial, I am not a doctor and I certainly don’t play one on TV. I don’t today have any significant chronic medical conditions–at least that I am aware of– nor do my wife or children. We are blessed. However, I am the child of two people both of whom lived with significant chronic medical conditions, and that is what shapes my view of healthcare (and probably just about everything else).
My dad was the oldest living survivor in the first group of human subjects (three little kids at the start) to receive insulin as a treatment for diabetes–which means that I too owe my own existence to that marvelous drug. Although he received a degree in chemistry, as a young man he worked as a photographer (family legend is that he worked for Alfred Hitchcock in the 30’s). By the time I was born he was blind.
My mother was a victim (is that the right word?) of The Great Influenza. What a kick-ass Bug that was!! (For an excellent description of this amazing critter, as well as a compelling history of healthcare, I recommend James M. Barry’s “The Great Influenza: The Epic Story of the Greatest Plague in History”.) Today, at 92 years old, its pretty safe to say that the primary lasting manifestation of the Bug was that she also lost her sight. (I’m sure there are other consequences, but this is the most apparent one.) Today, she is in the late stages of Alzheimer’s disease (which could, of course, could itself be another manifestation of the Bug).
My mom began losing her sight as a small child in the 1920’s and was totally blind by the time she was in high school. Most of her education was at The School for the Blind, an amazing school in Lansing, Michigan. After studying at Michigan State University and The University of Pennsylvania, she was hired by the State of Michigan to be one of the first two teachers of newly blind adults, which is how she met my dad. They were married in 1953, and I came along the next year.
My earliest memories–as well as many of my current day activities–deal with healthcare issues relating to my parents– my dad injecting himself with insulin, my mom watching him (by the way, “watching” is the appropriate word here–even for two blind people–just like “watching TV”), monitoring his condition, to know when he was about to have “a reaction” then dealing with it when it eventually came. It wasn’t easy then, and for those dealing with diabetes today, its not easy now.
There were no glucometers as we have today. He pee-ed in a cup, and I dipped a strip of litmus paper (I think that’s what it was) and told him the color. That was it. My mother worried when he’d exert himself–shovelling snow in our small town in Michigan’s Upper Peninsula, or pulling my wagon as he, with his guide dog, walked to the distribution location for that month’s supply of Surplus Food. (Surplus Food was the name of a program to provide food to poor families in the days before food stamps and other safety-net programs.)
But those are the physical manifestations of chronic illness. To varying degrees, they are manageable. There are also the social manifestations of chronic medical conditions and they can be at least as burdensome and often far more challenging. These are the core of my interest.
The distinction between not being able to see and being blind.
While many of my memories deal with the our family’s struggle with physical aspects of chronic medical conditions, far more memories, or at least those that remain near the surface today, deal with the social challenges of living with chronic medical conditions. From people who stare as though we are freaks, to ridiculous behaviours that constitute discrimination albeit of the most well-meaning kind, to the challenges of employment, the social consequences of chronic medical conditions are the challenges which have been hardest with which to deal.
While my experience relates most closely to diabetes and blindness, that experience is universal. And no where are the challenges of chronic medical conditions more profound than when it comes to dealing with the healthcare system itself. Everyone reading this has his or her own story to tell about the challenges of dealing with the insurance and healthcare system which is at least as compelling and daunting as mine.
My mother put it best: “I can’t see. That is a physical condition. I can deal with it. But I am also blind. That is a social condition. It refers to how other people see me. That is the bigger challenge.”
I look forward to telling you my stories and hearing yours in a context where we can help and support each other.
So, what is a TAB?
Our family was pretty much like any other family. As a kid, I was like any other kid, sometimes compliant with my parent’s wishes, other times less so. As a parent myself of four children, there are times when transgressions are significant and need to be addressed accordingly, but far more often a very soft reminder is sufficient.
In the house where I was raised, I think the gentle reminders were by far the most common. I’d break some rule or commit some transgression and my parents would feign anger. I cannot say that I never took advantage of my parent’s inability to see what skulduggery I was up to. Eventually busted, my mother would furrow her brow that her mouth would betray with a smile as she’d say with disgust “Ah! Your nothing but a silly TAB–you’re just Temporarily Able Bodied.” Then with a confiding, knowing voice she’d softly say “Sooner or later you’ll be one of us. Then you’ll get your comeuppance.” And we’d all laugh.
So there it is. I am a TAB–and hopefully I will be for a long time to come. After all, life itself is a chronic medical condition, so taking personal control is what healthcare is all about.