This post will be a little bit of a downer. I’m sorry.
I was talking to some work colleagues recently about the time leading up to and including my diagnosis with type 1 diabetes. Like many people – indeed, like myself at the time – they were very surprised to learn that normal, healthy people could acquire “juvenile” diabetes so late in life. I often have similar conversations, and I always underscore this fact by pointing out that I won a 10K just months before my formal diagnosis.
This time, one of my colleagues asked me what was the biggest adjustment I had to make once I became a diabetic. Two things immediately came to mind, but before I mention them, I think it is interesting to consider that neither of my answers represents any kind of physical adjustment. That is, making dietary changes was no big deal for me. Learning to count carbs and adhere to an insulin regimen was ridiculously simple. Minimizing sleep disruptions and adhering to a more regular exercise regime were both easy adjustments to make. Learning how to socialize without partaking of food or drink was a little challenging, I guess, but more challenging for others than for me.
Instead, both of my answers involved mental adjustments.
The first adjustment I had to make was learning how to be “tethered” to my diabetes. What I mean is that, prior to acquiring diabetes, I wouldn’t have thought twice about a spontaneous hike or road trip. But nowadays, I always have to have some kind of “plan.” Sometimes the “plan” Is as simple as having a cool, dry place to store my insulin and having a pocket big enough to stash a few glucose tablets. But other times, the “plan” means I have to forego a particularly interesting hike, or adventure, or I have to not run a marathon, because the medical risk is too great for me to take it on. I can’t go anywhere without being reasonably sure that I’ll be able to get medical attention if I need it. At any time, my condition may create an emergency, and I need to have the ability to address that emergency, whether that means being close to a hospital, or having adequate food, or drug supplies, or being able to protect my medication from the heat, or whatever else it might be. Consequently, there is never a time anymore when I do not feel tied, tethered, to my medical condition. I do not think that most people can identify with this feeling.
The second and more important adjustment, though, is what prompted me to write this blog post. It’s natural to remark that acquiring a chronic medical condition forced me to confront my own mortality, and most people have a vague idea of what that means. Still, there’s a bit more to it than that.
In The Princess Bride, the character of Wesley awakes to find himself strapped to a table in The Pit of Despair with an assortment of pneumatic tubes affixed to various parts of his body. His captors turn on the machine, causing him great pain, and when they finally shut it off, one of them tells him, “I’ve just sucked one year of your life away.” This is a conceptually frightening idea (especially for a lighthearted comedy) because injuries typically take place in the present. One might suffer a debilitating injury that shortens one’s life, but the injury is observed now, in the present. But the machine in The Pit of Despair simply robs you of a future you have not yet had the chance to live.
I remember watching this film as a child and being somewhat haunted by the fact that, although the characters live happily every after, “ever after” is actually a shorter period of time than it would have been, had Wesley never found himself trapped in The Pit of Despair. One could argue that the Witchdoctor who later heals Wesley also restores his future life, but this is the stuff of fan fiction. Taking the story at face value means accepting that Wesley is robbed of one year of his life, and later of fifty years of his life during another experience with the machine. By the time The Princess Bride ends, Wesley does not have many years to spend on his “happily ever after.”
Type 1 diabetes is a death sentence. Not very many people know what’s going to kill them. But I do. The range of possible deaths for me has been narrowed to a very short list. This list includes fatal heart attack and stroke, and also includes a slow and slogging march to neuropathy, blindness, amputation, and eventually organ failure. You may find it macabre to think about or to read about, but the reality is what it is. If I live for a long time and take good care of myself, then I am likely to die in darkness, in a hospital bed, powerless and afraid. If I am very lucky, my family will be there with me. Subject to a realistic set of assumptions, they might not be.
Furthermore, this death is likely to occur as many as twenty years earlier than a normal person would have experienced it. I can imagine the voice of the Six-Fingered Man from The Princess Bride telling me, “I’ve just sucked twenty years of your life away.” That’s twenty years filled with my daughter’s college graduation? Or my future grandchildren? Of living out a fun-filled retirement with my beautiful wife? Trips on cruise lines to exotic locations? Productive years spent building a financial legacy to gift to my wife and daughter? Who knows what would have happened in the twenty years that have been robbed from me by my disease?
Although I’ve tried to articulate it clearly here, and hopefully successfully so, the fact of the matter is that I don’t spend a lot of time dwelling on this or letting it get me down. But the consequences of these facts are that now time wasted standing in line is excruciating for me. Time wasted finishing up a project at work instead of driving home to the wide-spread arms of the little girl who yells, “DADDY!” and leaps into me hits me with a weight that I cannot ignore. I hear people making excuses for why they can’t go out and have fun, because it’s a weeknight, or some other foolish reason, and occasionally a voice inside me wants to say, “You fool, squandering your precious weeknights on a pointless and unimaginative excuse!” I watch people grow fat with bad food and poor lifestyle habits, incredulous at how cheaply they are willing to sell the physical mobility of their last twenty years, as though an extra slice of chocolate cake or a weekly trip to the pizza parlor really is worth twenty years of agonized groans as they struggle to extract themselves from an easy chair. I watch people light cigarettes and inhale their eventual cancer and I think, “Money and life down the toilet, and for what.”
Call it what it is: I’m jealous of every fat man with an extra twenty years of life I’ll never have. I envy anyone who can keep up a dedicated addiction to Tex-Mex and ice cream. This is my problem, my mental shortcoming, my psycho-pathology. It has nothing to do with anyone else’s choices. It comes down to the simple fact that my beta cells died and theirs didn’t, and it isn’t fair, and I’m the one who’s stuck with it.
Learning to live a good life, a happy life, a successful life in the face of knowing about my own death is the biggest adjustment I’ve had to make since becoming a type 1 diabetic. I’m not depressed about it, but it is what it is.