How do you see your life’s story? How would you distill your life into a relatively brief synopsis that can accurately encompass all of your experiences, and all of the billions of thoughts that run through your mind throughout a lifetime? It’s impossible isn’t it? And yet, all of us repeat stories from our lives over and over, especially as we get older. I find myself dragging out anecdotes from my six years of volunteering for the LPGA Portland Classic golf tournament all of the time. I will find a way to shoehorn it into any topic. Clearly those experiences are important to me, though they are boring fodder to any audience.
Last night, I was reading through a printed version of the After Visit Summary from my most recent doctor’s appointment. Generally, these are 2-4 pages, but this one is 32. There is an entire page devoted to all of my diagnosed ailments. It is, in a way, my biography, and yet it isn’t. Sure, my mind flashed back while reading “kidney transplant” on the list. Wow, was that a time? That gift of someone’s kidney saved my life. I still have a lot of guilt and sadness mixed in with my elation about receiving a second chance at life at the age of 33. And that’s just it. This list is not my story and I found myself getting upset. On that list of ailments is “Migraine.” How did it get on my list? I have had maybe three migraines in my life! I have suffered from a variety of headaches for most of my life, but migraines are not what I suffer from. The list includes “Morbid (severe) obesity due to excess calories.” Though true, it feels disingenuous. I gained about eighty pounds after my kidney transplant over the course of about twelve months while on high doses of steroids that were designed to keep my new kidney safe from rejection. When I received the transplant I was about 140 lbs. A year later I was about 220 lbs. I essentially maintained that weight for sixteen years, until I needed steroids again in 2021 when I had severe swelling in my head from a failed attempt at radiation therapy to destroy tumors. The steroids reduced swelling to make my life tolerable, and they helped me gain another 80 lbs. over a period of five to six weeks. Yes, I am obese, but it feels unfair to be labeled that way. There’s no nuance to the story. I reached300 lbs. and over the last year, with a lot of work, I have lost some of that weight. At that recent appointment I weighed in at 268. Way too heavy to the medical assistant who weighed me, but to those following along: “not bad.”
I hate to criticize my healthcare. I am overwhelmingly grateful to anyone who wants to take of people. I admire everyone from the mighty brain surgeon to the cleaning staff at a hospital. I am grateful for their hard work and care and effort. I also am aware that records like in the after visit summary need to be cold and clinical. When passing information from caretaker to caretaker, they don’t need to know my life’s story, but I guess it’s helpful to know that I am indeed morbidly obese. I understand and have witnessed people trying to explain nuances of their conditions to a medical professional, as that professional tries to distill that information from five minutes of detail to one or two sentences or a code. I also realize that our lives cannot be coded or simplified in this way. Our lives are made up of those things that make us who we are. Those things that are not so straightforward. We are not keywords or codes for huge insurance companies to decide how your care should be covered or not.
Do I blame this doctor? Yes, I do.
It’s careless and thoughtless. I
also don’t. The system is messed
up. He was likely supposed to be well
informed enough to be in charge of a lot of patients and all of their histories
and to be everything to everyone as fast as possible. I am often astounded and saddened when I find
out that, for example, Abby, my Physical Therapist, sees about twelve
different patients a day, or that the Cardiac Rehab team I work with see over
200 active patients a week. It’s
alarming to conceive of this workload, and it’s the entire system! These wonderful people are overworked and go
above and beyond and need help. So, when
I see minor mistakes like the ‘migraine’ mischaracterization, I am quick to
forgive. Yet, I feel powerless and frustrated when I notice that my list of
medical issues does not include mention of, as an example, my damaged
tongue. During that brain surgery in
2021, I nearly bit my tongue off, because no one put a mouthpiece in
place. My tongue continues to be a
health problem. I now have a lisp and
struggle to speak, but more importantly, it’ can be seriously painful when I
eat. It’s been over five years, but
apparently it does not merit notice.
It’s frustrating when I go over my medications with my caretakers,
because inevitably there are inaccuracies.
Sometimes medications I’ve never heard of land on my list of record and
are kept there despite my confusion and protestations, I may later see a note
in an after visit summary that “pt.
CLAIMS that they don’t take this medication.”
An interpretation such as this paints me as hysterical.
This leads me to a personal problem I have and it’s been more severe for me over the past three years. Late in 2022, I made the decision to stop working to focus on improving my health. After that fateful brain surgery in 2021, I was declining and declining fast. I had numerous physical ailments as well as some cognitive issues. Because I had to give up my work sponsored insurance, I had to rebuild a new healthcare team from scratch. Unfortunately, having Von Hippel-Lindau Syndrome (VHL) merits a care team. My goal has been to work to improve my health and treat it like a full-time job. I have had various therapies, medical tests, and checkups nearly every weekday multiple times a day for over two years. I have always (even as a kid) tried to personally connect with my caretakers. I want to know them. I want to know why they are there. I want to know what makes them who they are. If I am going to be divulging my ugly secrets, it seems fair that I learn that they may be an avid reader. I need to know them as people – not as someone getting paid to take care of my broken body. This has led me to a critical juncture. It’s at least two fold. I’ve had to change my insurance again due to unforeseen events and now I may lose a lot of this close and personal care and I have been freaking out. I have been absolutely panicking, because I feel like all of the hard work I’ve put in building a great care team and toward getting healthier (and finally seeing the benefits – walking without a cane, finally losing some weight, feeling stronger) seems to be slipping away before I am ready. There’s also the personal side. I do not want to say goodbye to these people. They have cared for me and helped me in ways that I cannot begin to describe. When I was still working and had an active social life, I did not lean on my healthcare team for socialization, but now, they are the ones I chat with about music, movies, shows, books, weird shit that happens, life, and of course, the weather. These people are now my family, friends, and confidantes. I do not want to say goodbye. The practical side, I know that they’ve provided me tools to continue to work on my own, but I will miss them all dearly and it absolutely breaks my heart. Yet, as stated above, I am still “the patient (pt.).” I read those after visit notes, where an hour’s worth of random chat is distilled to one or two sentences, like “the pt. CLAIMS his back hurts.” Because I so want to connect with these people, I forget that they are working and that they have to document the time they spent with me. It still hurts. I am only one of those hundreds of patients. Nothing more.
This leads me to another conversation I struggle to have. As I’ve devoted so much of my life to the medical world, I’ve found myself incredibly lonely. It’s been a lifetime thing. When VHL was diagnosed in my family, I was thirteen and had no symptoms. In fact, my first major kidney surgery landed during the middle of my 8th grade basketball season. I was amidst puberty and mostly healthy. After that, I steeled myself against the idea of a future of constant medical attention via periodic scans, checkups, and surgeries. I made decisions like “I will never have children” that slowly made me believe that I was a burden unworthy of love or any kind of attention. I felt and still feel like a physical freak and a pain in the ass. I have taught myself to not allow anyone in to my nightmare, because, well, it’s a nightmare. I have always wanted to present myself as Teflon. I have always defined my story as someone who can handle anything that comes my way. I pride myself on being independent. I wrote a paper in High School about humility and independence. I still believe deeply in those things, yet I am finally realizing that I’ve not allowed nurturing and love in my life. Ever. It’s been a slow process of self-discovery. I’ve written previously here as I’ve slowly hit upon some of these revelations like how and why I’ve always struggled to plan for even the near future. How I have shuttered the notion of dreaming about my future. I’ve always felt unengaged, and a little jealous, when I hear people’s stories about how they've set a goal and work hard to manifest and achieve that goal. I do not set goals and do not know how to manifest anything. Without that planning and dreaming, I have learned to close myself off and it’s lonely. It’s difficult to write about, because it’s deeply personal stuff I’d rather not admit is real, but it also can offend those who are in my life. Those who do love me and see me for who I am. I do not want to short shrift anyone and am often overwhelmed by the love and support I do receive. It means so much and has kept me motivated to try to stay healthy all of this time. When I say I feel alone, it’s in that I’m missing out on that personal intimacy. I do not have a partner – a significant other. It’s different than having a friend check in on me via text message. Part of shutting down after my VHL diagnosis has had the major side effect of not being able to allow love to blossom in my life. During my physical therapy sessions over the years, I witness other patients working through their obstacles and challenges alongside their therapist and often with a loved one who is there to champion and cheerlead them on. The first time I took a step without assistance after that 2021 brain surgery, my therapist clapped her hands and yelled “Yay!” and that was great, but that was it. When I told a few people afterward about my big triumph, it felt as if I was telling them about those times I volunteered for the LPGA. YAWN. I do not have that intimate support. I have not allowed anyone in to be my champion and it’s been making me feel incredibly sad.
It’s funny because my current bout of intense loneliness is less about being alone and wanting someone to love me, than it is wanting to love someone who also loves me. I don’t think it’s a change. I think it’s more of a realization. I believe that I really do have a lot to offer at least emotionally. I have a massive well of desire to be there for someone all of the time. I’m tired of trying to support those friends that I love dearly from afar. I’m very happy for them. Most of them are well-adjusted enough that they have significant others in their lives and do not need me to care for them when they are ailing or struggling. They don’t need me to hold them when they need to be held. They don’t need me to be a confidante about their deepest insecurities and fears. I am, at best, option two. It’s the other side of the same coin. Yes, I greatly desire to have someone close in my life who is here with me through all of my medical battles and deficiencies no matter what, but I very much want to be there for that mythical person. I very much want to uplift and be strong for someone other than myself, because you know what? I am over myself. My tired story only plays out negatively, and I don’t have any more energy for it.
Of course, a big issue, aside from intense self-loathing, is that I only have eyes for an occasional particular woman. It’s been this way since I was a kid. I find myself drawn in by one individual, and in my mind, there is no compromise. I only desire that person’s companionship. Life circumstances either end it as I inevitably fail to try to win them over by actually professing my adoration, they (or I) move away, my health declines and I have to manage another personal crisis, or I do actually ‘make the move,’ and they are not interested. So, I’ve drifted along. I’ve dated a little, but have never felt that intense desire. I have tried to make it work, but I cannot fake it, or allowed it to happen. I’ve had a few chances over the years, but could never make it work. This is where I wonder. I wonder if I’ve cheated myself in a way that has left me now alone and inconsolable at this late stage in life. Why can I not accept anything less than these few attractions? Why can’t I let a relationship begin and simmer into something that can be pretty damn good? Why do I need these ‘dream girls’ that I become so obsessed with? Most of the time and most of my life, I’m okay being alone, and sometimes I’ve been thankful. When I do find myself lonely though, the emptiness and depression that set in are completely overwhelming. I cannot feel good or even just okay. I am in constant misery and I do not know if I can recover. It does not help my already low self-esteem either. The fact that I am never interesting to those whom I find so damn alluring is a very detrimental blow. In a lifetime full of also-rans and being forgotten and misjudged, or coded incorrectly like in those after visit summaries, I find myself believing that perhaps I really am worth nothing - that my life's story can fit onto a one page list of medical problems.
My emotions are raw these days
because my health is once again uncertain and declining, my insurance uncertainties
have put not only my already flimsy financial stability in serious doubt, as
much as the quality of my healthcare, and I am facing it all feeling
extremely lonely. The past few weekends
have been endless nightmares as I dwell on these things and find no positives
to grab onto as a lifeline. This weekend
I’ve been wearing a heart monitor, and have been having trouble keeping the bib
that holds the monitor in place tied. My
ataxic left hand makes it difficult to tie even the simplest of knots. I can’t help but think that if I had a
significant other, this would not be a problem.
How would this all be added to an After
Visit Summary: “Pt. REFUSED treatment?”
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