So if you’ve read anything about trends in modern medicine, you’ve noted that what is imminently clear is that treatments need to be tailored to the needs of individuals and not to broad targets of whatever is “average.” At least that’s what scientists know. But are doctors scientists? Some are. But a great many are not. And the result of that difference is that when most of us are being treated for a condition, we will be looked at in terms of a protocol which likely is intended for what I call, “the great middle.”
If you remember being taught what a bell curve is in school, you’ll know that there is a big rise in the center and smaller wings on either side of that rise. Woe to those of us who don’t fall comfortably into that big spot. Our responses to the protocols can surely be less than wonderful. Last Wednesday morning I showed up at my local hospital for a long overdue knee replacement surgery.
The first thing that happens is “prep.” The nurses get you ready for your procedure, followed by the anesthesiologist whose job it is to keep you alive and asleep and then alive and awake. The first thing I ingested was an oral cocktail of 4 different pills selected by my orthopedic surgeon. Last year when I had my first knee replaced, I asked the nurse what the cocktail was for and how the drugs were chosen. She didn’t really know so she called to ask my doctor. First he phoned me to explain but then he felt a personal appearance in my room was in order. I could tell he was annoyed, especially when he asked me the following question: “if you boarded an airplane, would you go into the cockpit to ask the pilot what his plans were for your flight?” When my response was that my behavior would depend on the circumstances, he wasn’t amused. This guy likes being inside the lines. After that first procedure, he went out to speak with my kids and told them they’d need to sit on me during my recovery. We’re not a great match. But in my part of the world his surgical outcomes are the highest rated. So I stayed with him for my second rodeo. That meant that this time, I just didn’t bother asking much about the pre-operative cocktail. I’d survived it last October and gambled that I would this time. Next came the anesthesiologist.
He was going to give me a nerve block in my inner thigh which would numb the nerves to my knee, offering more pain relief. After all, they do saw part of your bone off. I was given a drug to relax me before this procedure. It didn’t work very well. I asked him to show me how he made his choice of where to inject the rather large bolus of the rather dreadfully named “nerve agent.” As I watched on a sonogram, he pointed out my femoral artery and mentioned how important it was to avoid that lifeline. This, while poking and manipulating the large (at least to me) syringe which he put into a few places in my thigh. After that I was rolled into the operating theater. After some adjusting between my hospital bed and the operating table, I slid over and was descended upon by gowned and gloved people who began to attach drips to my IV. Eventually I said goodbye as I inhaled mystical concoctions from a mask they put over my face.
The next thing I knew I was in post-op, looking around at my fellow recoverers and asking for ice chips. When I finally got to my hospital room I had more medicines injected into my IV. I know there were antibiotics and pain meds. I’m not sure how many anesthetics I received that way. Eventually, the nurses began to appear with little clear cups filled with different pills and capsules. I knew they were for pain and blood thinning and stomach problems and constipation. They showed up every few hours. When it became clear that I was doing well enough to be released the following day, a flurry of paperwork was done and I was given seven new prescriptions to pick up on the way home. These seven were in addition to three prescriptions I take on a regular basis. Along with them, I had seven other pills which were supplements of one sort or another, each to either heal, prevent or override one effect or another.
When I got home I actually needed a bag to carry what amounted to 17 different drugs to be taken daily. Oh no, I said, oh no. I didn’t ever fill the big opioid guns I’d been given for my first surgery. I have a high pain tolerance and didn’t want to borrow any potential addiction trouble. My mom was addicted to medication most of her life and I’d rather scream in the street than go through the multitude of issues that her drug use spawned. But I thought I’d try the lower level ones. I was fed up in a day. I was fuzzy, dizzy and lightheaded. My stomach hurt. When I’d wake from a nap, my tongue was stuck to the roof of my mouth. Although I was mobile, I just felt rotten. I started looking up side effects of all the medications. Each, both prescribed and over the counter, had ominously long and scary lists of problems.
Of course, I understand that for liability reasons, even if only one person experienced a side effect it would need to be included in the warnings. But many medications had the same side effects – how could I ever know which drug was causing which feeling, with so many introduced simultaneously? I had an interesting chat with my son-in-law, who is a scientist and a chemistry professor. He told me some interesting stories about different ethnic groups who had specific mutations and for whom certain painkillers would have no positive effect whatsoever. No one really knows anything about what makes me “me.”
So I decided to stop taking all the medications except my usual ones and a few which I considered vital to a healthy outcome for me. I didn’t consult my surgeon. I couldn’t see the percentage in doing that. I’d just be the questioning rule breaker to him and he and I aren’t done with each other yet. So I’m trusting myself and my years of life experience to guide me through this recovery. I went to my first physical therapy appointment today which went very well. I’ve had the same person for both my knees and she told me I was way ahead of the curve compared to her average patient, regardless of age. She did mention that so many people come in foggy from drugs that they’re barely functional. So with a little pain tolerance, I get a head start. The point is, patient beware. Do your homework and be an active participant in your own care. What you know about yourself counts. Doctors don’t know everything. Let’s use our brains while they still work and maybe we’ll be treated more kindly by the rest of our bodies.
Life can be so random and serendipitous. Who’d have thought that a person I’ve known since I was a child would wind up marrying one of my husband’s high school classmates? Michael and I found out that happened when we attended my 20th high school reunion, thirty years ago. I’m not sure if we knew beforehand but I remember Michael and his buddy being glad to see each other and catch up on their lives at this event that belonged to their wives.
Fast forward to 2017, the year Michael died and the 50th high school reunion of his graduating class. His friend added me to the 1967 class social media posts. In addition, one of my oldest friends was a classmate of Michael’s and I gave her messages to pass along to certain classmates about whom Michael had told me many stories. His death was very fresh back then and I numbly read through posts written by his old friends and felt the strangeness of seeing him listed on the “In Memoriam” section. Now more than two years have passed. Michael’s classmates have been turning 70 this year. Although I was a year behind him in school, I’ve just turned 68 as I’d skipped a year of school when I was young. So despite having gotten through what should have been Michael’s 70th birthday, I didn’t register that this significant birthday would be cause for another celebratory event. But suddenly I found my membership in his class’s social media groups exposing me to the bash that was going to occur last weekend. My head is certainly more clear than it was two years ago, despite my knee surgery and drug blur. Before I knew it, I was watching live feed Facebook video of all the people who’d gathered to share this event. What an incredibly strange experience. Except for his friend who is married to mine, I haven’t seen most of these people except for yearbook photos. But I know about them. I know the women Michael had sex with when they were young. I know who was a virgin and who wasn’t. I know who drank and who didn’t. Whose homes were broken and whose weren’t. Which person owned what kind of dog. Whose mothers were nicer to Michael than his own. And there they were, having fun, eating, talking while I was a voyeur. Admittedly, although it makes me feel small, a jealous voyeur.
Why were they alive when Michael isn’t? Why did he draw the random short straw for a miserable rare cancer? Why did he look so handsome and robust, almost to the very end, despite years of treatment and disease? Why, why and more why? I’m not exactly thick-headed. And yet here I am, still going round and round with so many ifs and maybes and the unattractive willingness to trade so many people if only I could get him back to go through these still vital years with me. Maybe it’s ugly and selfish. But it’s honest. When my sensibilities aren’t flooded by my desire to get that life that was stolen from me, I’m nicer and more kindly to the lucky people. But I’d be a liar if I said this wasn’t a part of me. So here I stand with all my flaws. That’s the way it goes.
Food trays were being delivered and I could smell hamburgers and French fries. I waited expectantly for my turn. When my tray finally came, it contained a pathetic wobbly square of lime jello. That did it. Enough was enough. First a pack of lies and now starvation. I told my mother I wanted to go home and began pitching a fit of epic proportions. The doctor finally came in and said I could leave, but only if I was able to reach my dress, black cotton with red, gray and white polka dots on it, which was hanging from the crossbar which held my curtain. And I needed to put it on by myself. One minute I was gowned and the next minute I was dressed. I was so proud that I got to go home and sleep on the couch, outside the room I shared with my sisters. I got to eat real food, some salami and eggs instead of that crummy jello.
Fast forward sixty years. I’ve been crisscrossing the country, traveling to the east coast and New England, winding up in Bar Harbor, Maine and Acadia National Park. After a drive back home, I stayed put for a week and a half and then boarded a train west for a solo trip to Glacier National Park, a place I’ve been trying to see since shortly after my husband died in 2017. I returned home from that marvel late on July 5th. Then at 5:00 am on July 10th, I found myself in a surgery prep room being stabbed by nurses who couldn’t find a good vein for my IV that I’d need during my second knee replacement surgery.
Finding a room for me after recovery took hours. The hospital likes to be overflowing with patients, a testament to a any profit-driven facility’s planning style. When I finally got a bed, the nurses said they were discharging and replacing patients at a steady clip. I never saw my surgeon after my procedure. My son told me he had a deep and profound 12 second conversation with him. A nurse practitioner and the physical therapy people came in to put me through my paces. I saw a two-night stay written on the white board in my room turn into a one night stay which was my goal. So start to finish, I was only hospitalized for 32 hours including surgery and recovery. I came home in my anesthetic fog, vowing to sleep downstairs for a few nights to accommodate the pain and to withdraw from the painkillers prescribed for me. But the first night, I spilled water all over myself on my recliner so I headed upstairs to my bed. The pain wasn’t bad. I realized that being bone on bone for so many years was actually worse than the post-surgical pain. I haven’t had any of the opioid painkillers since Friday night and have more mobility and flexibility in my knee than I anticipated. Great news, right? But actually…oh no! I feel like I’ve crashed and burned at the end of a highly entertaining road race.
Tearing around the country looking at impossibly beautiful scenery, standing in the shadows of historical sites, and feeling free and occupied by an ever-changing landscape agreed with me. Despite knowing that my surgery was waiting, I immersed myself in my moments as I’ve learned to do so well during the years of Michael’s illness. I truly hadn’t given much thought to how I’d feel during the recovery from this knee replacement. My first one happened last late October. The weather then was brisk and being inside was comfortable. I had plenty of tasks that I’d assigned myself and was content with my choices. With my adventuring coming to a screeching halt in the midst of summer, with my number one pool open and constantly beckoning, and my garden of this year, still a riddle in terms of last year’s polar vortex damage, I want to be outside, not picking my way through piles of old papers or sorting through drawers. For a person who prides herself on good planning, I’ve certainly dropped the ball on this one. Only home a few days and stewing away in frustration.
Holes to be dug, plants to be replaced and weeds to pick. And though some kind people will offer to help, the healing nature of this work is something I count on to keep myself on an even keel. Nothing like the dirt to distract me from maudlin thoughts. So I have to readjust. Because of good luck, I’ve already managed to slip into the garden, photograph a few blooms and ponder the empty spaces. And I got my kid to take me for a drive in the country today before he leaves town for a few weeks.
I learned how to do revitalizing meditations to help me stay calm and cerebral when Michael was sick and needed my help. I have the Calm app on my phone and I use it regularly. I’m pretty zen when I swim. Still, a lot of my time is spent thinking, analyzing and considering, often about multiple topics simultaneously. It’s just how I roll. I think all this began when I was really young because I remember these same feelings and thoughts from my childhood.
And so it was on my long-desired trip to Glacier National Park, which in its essence was everything I dreamed of and more. I’ve been to a good number of national parks, Acadia just last month. Certain ones had more impact than others. I’ll never forget Bryce Canyon, Zion and Arches. I got to experience those with Michael which enhanced their majesty and spiritual power for me. Being on my own in Glacier, it was all about me, with my forever bond with Michael, tucked into my most interior self, like an extra vital organ. But I saw and felt Glacier through the lens I bring to everything, the one when I am simultaneously in my moment while my mind is zipping along, connecting that moment to how I perceive the world.
I went to Glacier by train which is a great way to travel and really see parts of the country that are off the main road and certainly hidden when flying. I spent almost all my waking hours staring out the window. I don’t want to miss anything. I’ve never tired of seeing cattle and horses, not since I was a little kid traveling up and back between Iowa and Chicago. On an overnight rail trip, there is so much more as you travel from state to state. I saw buffaloes and donkeys.
Numerous white tailed deer grazing and springing through the fields right next to the domestic animals. I saw a swift fox. I saw American white pelicans, great blue herons, American kestrels, a ring necked pheasant and lots of red winged blackbirds, mallard ducks and rabbits.
But I also saw small towns that looked economically ravished. Aging buildings and others that have already fallen. There’d be this gorgeous green landscape and suddenly piles of junked cars and garbage would appear.
The Blackfeet reservation is actually a conglomeration of tribes whose general name is Niitsitapi which means “the real people.” I saw buildings with the words “no meth” painter boldly across the walls. The very idea of reservations appalls me. Would you like to live with your people in a designated area? Me neither.
The Blackfeet tribe has rights to parts of Glacier National Park which include their most spiritual locations such as Two Medicine. Ceremonies are still performed there such as sun dances, while sweat lodges are built for the transitions and rituals of native life. I took a boat ride on Two Medicine Lake and went through their valley. You can feel a powerful spiritual presence there. I opened myself up to let it blend in with me and Michael and my own belief system. Certainly not the same as theirs but nonetheless connected if by nothing other than the surrounding natural majesty. The natives call some of the mountains the backbone of the earth. It’s not hard to understand why.
I stayed in East Glacier Lodge which is a beautiful old building with no televisions and sketchy internet. It lends itself well to getting in touch with what this place is supposed to mean to human beings. Their staff all seem to share a common attitude of preserving the nature of the park and its mystical energy. There are tributes to the natives throughout the lodge and the park although for me, it wasn’t enough. Keeping a piece of your ancestral land rings hollow to me. I saw a tall Native American man tending flowers at another lodge. He resembled Will Sampson who played the chief in One Flew Over the Cuckoo’s Nest. He seemed to enjoy what he was doing and had positive interactions with a few people working with him. Maybe his life is happy. Maybe I’m the one with the problem.
Let me stop and say that I felt everything I hoped to feel at Glacier. As I stood before mountains that are estimated to be between 1600 and 800 million years old, I felt my smallness and the tiny place that I know I occupy, even when things feel huge. I felt the fabric of connection that still binds me to Michael and my love for the earth and its marvels. But then the guide told us that the remaining 20-odd glaciers are expected to be gone by 2030. Unimaginable. Was this destined to happen over a long period of time or isn’t it part of the upheaval we’re seeing all over the world. Climate change. I’ve heard all the arguments from people who say it’s been hot before, we’ve had hurricanes before, we’ve had fires before. Blah-blah-blah. Our planet is threatened. I have no doubt. Blazing hot temperatures in Alaska. Water supplies in India drying up. Europe sweltering. The hottest June on record. Ever. I’m not capable of simply enjoying my good fortune without thinking about all these frightening things. I’ll be dead before the worst stuff happens. But what about all the children and grandchildren? I have hope that brilliant people will find ways to turn some of this around. That we’ll stop burning fossil fuels. That we’ll get rid of plastic in the oceans. That a place like Glacier will still have snowy peaks in the summer. But to ignore it for my own mental well-being? No can do. I had the privilege of seeing so much wildlife in the park. I saw a black bear, a moose, long horned sheep, elk and mountain goats. They’re just doing their thing. But a lot can threaten the ecosystem that supports them and I worry.
Through the train window I saw the amount of flooding that occurred when the Mississippi overflowed its banks, not to mention the smaller rivers nearby. The wooded area and retaining ponds along the tracks are filled with mile after mile of algae bloom. That can’t be a good thing. As I watched animals drinking from this green pea soup I wondered about the chemical runoff from farms into the water table. Not to mention what can happen to people’s drinking water. Still thinking of Flint over here.
Sometimes the light’s all shinin’ on me,
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been. – The Grateful Dead
Yes. That’s exactly what the last two years and change have felt like for me. A mixture of light and darkness, often a blurry palette, although I’ve come to know that my most essential self is primarily sunny.
I can’t account for how much life is determined by genetics versus environment but my mother told me I was a cheery baby from the start and my older brother said that when I came along he felt truly happy. I’m alone on an Amtrak train, headed out of Chicago, my hometown. I still feel that, despite having lived almost 50 years in my other hometown, the place where I went to get an education, found my partner, my community and raised my children. Two homes. That seems right.
I’m headed north and then west to Glacier National Park in Montana. I’ve been trying to get there since 2017, when the wild effects of climate change caused the park to burst into flames, not just that year, but also the one following. I finally figured out that my wanting to avoid the crowds was putting me into the dry season so this trip will be chilly and perhaps a bit snowbound at the higher elevations. I don’t care. I need to get there. I know that this natural majesty and sheer size will help me stay oriented to my actual place in this universe. I actually took a photo of Michael in Arches National Park to illustrate this concept.
I am a speck, maybe even less than that. The world and the people around me can easily skew that perception. I yearn for smallness. I felt too important and too needed for a long time. And my tasks were always truly out of my control although I fought furiously to empower myself and wrest some measure of power from invisible forces. In the end I gave everything I could muster from myself. Since Michael’s death, I’ve been grappling with how I ultimately had to surrender the person I most loved and find a way to live without what are for me, the most essential parts of life.
The repository for my trust. The confidante for whom nothing needed to be held back. The warm body to lean on, sometimes in the day and through all the nights. The person who shared the exact same feelings about our children. Oh my, how I have empathized with those courageous single parents out there. Passionate kisses and passionate sex. Lucky me, lucky me to have had so much to lose forever. Because nothing could possibly compare to any of that.
So I am silent in my little berth. I have Michael’s miraculous old iPod with its 2500 songs. I have his water bottle and my walking sticks to help me experience this glorious nature while protecting what’s left of my battered knee, soon to be replaced when this trip ends.
I’m looking out my window at all the views you can’t see from the car unless you travel the backroads. The train has Wi-Fi. I can watch Netflix if I choose that. Maybe when it’s dark. For now, I’m writing down the names of the birds I see and looking at trees and clouds like I do when I’m home. We’re passing through Milwaukee where the temperature sign reads twenty degrees cooler than it was when I headed out early this morning.
I looked at Facebook a while ago and saw the memories generated by whatever their crazy AI technology is and sure enough, there photos of a trip Michael and I had taken to the Outer Banks in North Carolina on this date in 2014. He was a couple of months out from his mega-chemo cocktail and had one clean scan under his belt following that treatment. The next one would be in August where three cancerous spots would again reappear on his bones. But that June, we were traveling as we’d decided to do between scans. We were going to have a retirement come hell or high water. Michael hated having his picture taken, so I was surreptitiously getting unconscious photo bombs from him while he innocently read his book.
Those photos are a perfect metaphor for right now. I feel him near me just like that, a bit off to the side, doing his thing, but close. As he always said, he was going to be with me forever. I’ll take what I can get.
Today I was swimming along in my favorite pool, trying to shake off the long hours of driving from my two week long road trip. I did get exercise as I traveled, but my normal regimen was definitely disrupted as I often chose between sleep and workouts. The older body and screaming left knee make different demands than the body of my youth. I am rushing to get back to optimum strength as my knee replacement surgery looms ahead in the beginning of July. Most people who’ve had both of their knees replaced tell me that their second one didn’t go as well as the first.
Seems to me that too many people spend time feeling boxed in or closeted. I don’t like this. Why do people feel the need to organize others into understandable, identifiable places? So they don’t feel confused or out of order in some way? This kind of categorizing has bothered me since I was quite young. There were the cool kids, the nice kids, the bad kids, the nerdy kids, the athletes and on and on. The weird people, the smart people, the phonies and posers, the outcasts and the in crowd. I hate all that. Now I spend time worrying about closeted celebrities who I read about and can’t understand why people can’t be who they are without fear. Why does anyone care about what anyone else does as long as it doesn’t put someone else in danger or at risk? So many inexplicable rules.
But in the immortal words of Patrick Swayze in Dirty Dancing, “nobody puts baby in the corner.” I always want out. I don’t want to be predictable. My parents lived in Chicago for most of their adult lives and I think they ate at five restaurants. They astonished me. They lived small. I always wanted to live bigger. And it doesn’t have to be expensive or wildly adventurous. It just had to be outside the boxes that people seem to find themselves in without knowing exactly how they got there. Recently my son pointed out that he thought my behavior was unusual.