The Surreality of Chronic Illness
If the name had not been co-opted so many years ago by the MTV Networks as they ushered in a new age of dumbed-down reality television, I would propose a new docu-series called "The Surreal Life" about living with chronic illness. My experience trudging through days with Stage IV lung cancer has opened my eyes to the unique perspective of constant adjustment that patients and caregivers must go through while their realities continually shift. It is almost impossible to relate to without having experienced it firsthand, and it is, indeed, nothing short of surreal.
Recalling my old life
In my old life, that time of existence before my diagnosis tilted everything I knew on edge, it would never have occurred to me that I would be gasping for breath after sweeping handfuls of my own skin and hair into a neat pile. It is the sort of image that I would have found absurd, even laughable.
I was not the most athletic person, but I was highly active and physically vibrant. I was not the most coordinated sportsman, but I was able and dextrous when it counted. Need a jar opened or a bag of chips pulled apart? That was easy. Until split fingers became too sensitive to button my own shirt or even undo the cap on my toothpaste.
Rising to new challenges
Struggling to accommodate myself in a world where I was no longer adroit enough for simple mechanical tasks wore me down. But the experience also raised new challenges, not the least of which was how to see the world differently enough with each new shift that I experienced. If I could be inspired by the changes, clearly it would be less depressing.
This would be the hook for the series, if I were to pitch it: how the chronically ill individual must rise above the weirdly unpredictable curveballs thrown by life every single day. But then it gets a little too maudlin for me. Really, we all know this already if we have been living in it. Beyond that, however, every single person I have known who lives with chronic illness faces it with the desire to continue living a "normal" life as much as possible.
Holding onto normal
That is the real challenge, after all: how one manages to be stuck in a surreal world and still make the adjustments to retain a normal experience. We want the ability to have the same experiences as those without persistent health issues. And we want, perhaps more than anything, that sense of control about our lives back.
And it is not just for ourselves. Our family, our friends, those with whom we have connections of any meaningful sort, are all affected by our experiences. This is why we grab at new, promising treatments, or opt out of them entirely to roll the dice. None of us is in a bubble, even when we feel entirely alone.
Building bridges to dispell stigma
Maybe throwing a diverse collective of patients into a house with a bunch of cameras on them 24/7 would be the wrong way to raise awareness or help them as individuals. But there is value in connecting with one another and sharing our voices. The lung cancer community is not that different, at least emotionally, from other groups of chronically ill people. Finding these connections can help to dispell stigma, but also to build bridges of experience and empathy.
And maybe there is something to be said for embracing the surreal nature of life as we know it. After all, it does open the world to a whole new level of interpretation.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
Are you satisfied with your care team?