As of last October, at the height of the COVID-19 pandemic, I was getting ready to battle my mother’s Alzheimer’s as part of the increasing complexity of being an elder caregiver. Fortunately I was in good shape (at least for me). Physically I was more fit than I’d been in a long time and mentally I was tuned in, making good progress on Melvin’s Neighborhood, my personal well-being and community evolution project. I was prepared for the battle with my mother’s dementia that was already proving to be a formidable foe.
Then a mysterious digestive issue hit me. Aside from not being able to eat, it was followed by extreme lethargy and weakness. Funny how that happens when you don’t eat and lay around all day. After practically a month of procrastination (things don’t magically get better) and then two months of muddling through the disjointed operations of Billings Clinic, all while losing 30 pounds (almost 20% of my body weight) — I was diagnosed with lymphocytic colitis and put on a rigorous steroid treatment program. Within days, I started to recover with my appetite coming back.
While all this was going on, I was battling a cough that prevented me from even laying down — which is more than a little problematic when one is trying to sleep. During yet another foray into the healthcare “system”; a chest x-ray revealed a white spot overwhelming half of my left lung. My GP suspected was pneumonia. The next day, during a routine visit to my oncologist, my doctor went into alarm mode disputing what my GP said. Instead he hypothesized my x-ray abnormality was actually a mass of fluid caused from my leukemia. I was whisked away to the emergency room for what was to be a routine drainage procedure of my lung. What was to be an hour out-patient procedure turned out to be the furthest thing from that. After major lung surgery; two days in intensive care, and a week in the hospital while having three three foot tubes sucking alien matter from me post-op — I was sent home, so weak I was only able to walk with a walker.
Fortunately, my sister, Christy, came up from Rapid City, South Dakota to help out for a few days and took over my parental caregiving duties. Even with the surgery and physical incapacitation, it was pleasant to not be responsible for the parents and have someone wait on me.
The pleasantries were short lived though. I was scheduled for chemo therapy treatment for my CLL: no I didn’t make it out of that previously mentioned oncology appointment unscathed. While this may sound like a big deal, which it is; this was to be my third session of chemotherapy so I was used to it. This time the drugs were supposedly better and more likely to do their job so I don’t have to make this an every other year occurrence.
The pleasantries were short lived though. I was scheduled for chemo therapy treatment for my CLL, chronic lymphocytic leukemia (no I didn’t make it out of that previously mentioned oncology appointment unscathed). While this may sound like a big deal, which it is, this is my third session of chemotherapy so I was used to it. I know the drill and this time the drugs were supposedly better and more likely to take hold so I don’t have to make this an every other year occurrence.
I couldn’t be so lucky. My oncologist called me the day (and left a message) before I was to go in and cancelled the chemo infusion. We still kept the appointment though. While I have no issue with uncertainty, when it comes my cancer — that’s a different story. Well, my appointment started out with, “I have good news and bad news”. The good news was my blood numbers were improving on their own so chemo was off the table. The not so good news was that I contracted (or always had) a new cancer, myelofibrosis. Myelofibrosis is very rare; mainly undetectable unless a bone marrow is done — which I had three weeks prior. The prognosis is decent (not great), but to even realize “decent”, I might have to have a marrow transplant, which would have to be done somewhere other than Billings Clinic in a different state in a real city. Just when I was getting used to the whole cancer thing, this reared its ugly head. If a transplant was the verdict, the coordination would be no small matter, especially with the parental caregiving responsibilities.
This blog post is not about self pity or a call for sympathy. At least that’s not the intention. I really don’t know what its purpose is. Maybe it’s a scream in a forest — a scream where you damn well know it won’t be heard. Maybe this is about wishing I didn’t have write it in the first place.
Maybe it’s about wishing there was someone around to hang with, if only once in a while. Maybe it’s about having an open door policy (like I had in Los Angeles when I cooked every night); where the door was really open and people would actually walk in. Maybe me writing this was just a call for having a neighborhood and an actual physical community … and most of all neighbors; neighbors that would walk in — something I don’t have where I live in Montana.
My experience over the last six months has not only been physically difficult (understatement), but maybe even more so emotionally. Not having any support structure around me has prevented me from “getting outside of my head” (aside from Christy that week, and over the phone with my daughter and a couple wonderful people I know through Twitter who I know genuinely care about me). Having no one to talk to physically or hug; or having someone to step in to allow me to get away from the dementia constructed “rabbit hole” my mother lives in, is taking a toll on my mental health. We all need to recharge. Maybe that’s more important than avoiding the bad stuff in the first place. I don’t have that. My reserve power light is stuck on — and it’s getting really dim.
We all go through our stuff, some not as bad as mine … and some probably worse. But regardless the severity of our stuff, having people around you makes it more palatable; while not having people around makes it unbearable. Regardless who you are, there’s only so much “sucking it up” anyone can handle.
Even before the COVID crisis hit us like a brick we had a loneliness problem in the United States. People have have become isolated, physically and mentally. This loneliness and isolation is also taking its toll on our health. Who knows, maybe this has played a part in my precarious physical state.
Lonely people probably aren’t just a damper on the national morale; they’re likely to be a strain on national productivity and health-care systems, too. The bodies of lonely people are markedly different from the bodies of non-lonely people. Prolonged loneliness can put one at risk for chronic health conditions, exacerbate various health conditions, and ultimately put us at increased risk for premature mortality.(What Loneliness Does to the Body)
We’ve been thrown into unprecedented personal, professional and social upheaval. We’ve lost those close to us; as well as jobs, businesses and essentially our lives as we know it. But beyond the loss of the obvious, maybe the most significant damage comes in the form of the toll the pandemic has taken on our mental health — mainly due to isolation. The uncertainty and loss, in combination with loneliness and isolation, is having untold longterm effects on our physical health and disposition. Anger and even hatred has become a habitual part of our lives.
All we want is to get back to “normal”. We impatiently wait for words from any expert, legitimate or otherwise, that will give us clues when that will be. But again, it’s all about “getting back”. The COVID-19 pandemic still grips us in its vice of uncertainty after over a year. Only now are we seeing glimmers of hope as vaccines become available, if not unevenly and under a cloak of skepticism for many.
But what if “getting back” wasn’t our goal. What if being obsessed with looking in the rear view wasn’t our default setting. When faced with a crisis, immersed in the unknown, all we can do is grab for the familiar — however good or bad that familiar may be. Doesn’t the idea of creating something better at least sound interesting? Can’t a life different, broken from the ties of yesterday, be an option? It can be … but only if we imagine it can.
Kevin Kelly, one of the founders of Wired Magazine, calls this forward-focused thinking, Protopia. But he also recognizes that this state of mind is not all that easy to attain.
“No one wants to move to the future today. We are avoiding it.” — Kevin Kelly
“We need to colonize the future ourselves; we must make our own maps of that territory, maps that show us as inhabitants and inheritors, making new economics, breaking with the deals and disasters of the past, and committing again to each other: to be a community and not consumers, to be partners and not competitors, to be from the future and beyond the past.” — Kevin Kelly
“I think our destination is neither utopia nor dystopia nor status quo, but Protopia. Protozoa is a state that is better than today than yesterday, although it might be only a little better. Protopia is much much harder to visualize. Because a Protopia contains as many new problems as new benefits, this complex interaction of working and broken is very hard to predict.” — Kevin KellyComplements to Stowe Boyd for making me aware of the concept of Protopia.
I call Kelly’s Protopia, the Perfect World; or more aptly — “Road to the Perfect World”. Life, whether it’s ours individually or how we contribute to the collective, isn’t a destination. It’s a journey. And that’s what the “Road to the Perfect World” is. We can go on this journey alone, or we can gather our neighbors and friends and make it a group affair. Trust me, the latter is a lot more enjoyable.
It’s the loss of these neighbors who were physically and emotionally near that could be counted on (often without even asking) that’s creating a social divide in America. In the past, before World War II, our neighbors were our support. They were the doctors, the midwives and the handymen. They were where we could go to get food when we needed it. It’s what got America through the Great Depression. We didn’t have to agree with them politically, socially or otherwise, but we knew them and they were still our neighbors. And we could count on them. (Rebuilding the ‘Middle Ring’)
I don’t know what my future will hold. Maybe sooner than later I’ll hit a pothole I won’t recover from. Any of us could. But regardless, maybe it’s time to revisit that era of our grandparents where our neighbors were who we relied on. We shouldn’t have to live through a depression to realize the benefits of having people close to us though.
That sounds like a good road to be on. Who knows — maybe I’ll be around long enough get back on it; the one that takes me where the door is always open and there’s food on the stove … whether I’m cooking it or not.