Three months ago today it was my birthday. Little did I know my world was about to be rocked. Frankly, the summer of 2020 has been my least favorite quarter in what has turned out to be my least favorite year. I never meant to disappear from this blog, although I can also admit that at the moment I am wondering about so much, including this. I do not think I am alone in this state of mental stress, alone in wondering, alone in fighting against change, alone in struggling for acceptance, alone even in occasional fits of denial. I am not alone in yearning for a former world, in wondering what this new normal will be, in protesting that I never wanted a new normal even as I acknowledge that it was probably overdue.
Autumn has long been my favorite season. Partially this is because I seem to be designed to prefer cooler weather. I don’t know where this comes from; I grew up in Texas after all, and New York has its share of summer heat and humidity. The Hudson Valley is not perhaps as hot as Tennessee, but if the global warming models are correct that could be changing. My preference for cool to cold air could be genetic although my siblings appear perfectly contented in the heat. Perhaps I just got the lucky side of the genetic draw. That is assuming, after all, that my genetic makeup, all of which derives from the north Atlantic island nations, Scandinavia, the northwestern portion of the European mainland, and the Germanic nations, plays a role in my climatic adaptation. Science seems to indicate it does. I will admit I don’t like 0°F any more than anyone else although I would far rather bundle up for the cold than deal with the heat. My ideal world would range from about 20° to about 72°. I say this even as I have enjoyed a long summer crop of tomatoes, eggplants and peppers. Being human is nothing if not a lesson in embracing inconsistency.
I digress. Autumn. In much of Western culture there is a tendency to associate winter, and its attendant darkness, with death. But this is not how I feel. I associate winter and the fall months as well, even with the dying back of winter growth, with repose, with turning inward, with rest and restoration. Autumn is a period of letting go of the excess of summer for me. And winter is a time of quiet nourishment where I can prepare to face another period of rampant worldly extroversion. Winter is Mother Nature’s introverted period. I think it is important that in ancient Hebrew culture, the day began at Sundown, in the period of darkness and rest that nourishes our brains and cells, allows them to build strength to face another day.
But this particular summer proved to be one of struggle, of battles which, for the longest time, I thought I was losing. I despaired. Although I wrote blog posts showing canning and gardening and knitting, I was, in fact struggling with all of that, doing a fraction of what I would normally accomplish. Admittedly, I shared some of my struggle with you, telling you that I fell, that I broke a nose and later a toe, sharing partial frustration over the slowness of healing. But that was only part of the story. Writing about the things I did, even the act of doing itself, was a bulwark against despair, against the things I could not yet say.
You see, there was more going on. Back in July, I truly had no idea why I fell, loathe as I was to admit that fact. In retrospect it is pretty clear that I fell because I had developed a heart arrhythmia, and I probably experienced momentary dizziness, the shock of face on pavement supplanting any awareness of the dizziness itself. It was only when I went in for pre-surgical testing that I learned that I was in persistent atrial flutter.
So began a summer of struggle: A struggle with assumptions and bias on the part of some doctors; A struggle with my own denial; A struggle to both find my voice and a doctor with a willingness to listen; A struggle of arranging treatment during a time of pandemic. It was a time of fear, and depression, and determination, my fear not so much of dying, which is not my fear, but of leaving a mess, and the far more frightening, at least to me, fear of the loss of independence.
I suppose I have to go backwards even further, back 25 years. In August 1995 I had heart surgery to repair a congenital heart defect, an Atrial Septal Defect or ASD. That information is relevant. I always tell people I am healthy as a horse but structurally unsound, by that referring to my scoliosis and heart defect. Both have been corrected. Correction does not mean returned to normal however, and there is then some level of denial in my self-accounting. It is true in terms of what people commonly refer to as “healthy” or “not healthy” but it is also only a partial truth.
When the flutter was first picked up I was still in shock. I was in pain and uncomfortable; I was not at all happy that what had been billed as a brief, pre-surgical blood test, was turning into an ordeal lasting multiple hours with multiple gross insensitivities and insults to my person. I was referred to a cardiologist who read my history of ASD repair and then made assumptions of what my care should be without listening to a word I said, patently ignoring my questions and objections, even when I pointed out that her assumptions were not in alignment with my actual history.
It was not that I feared the procedure in and of itself, but that I feared the added potential for harm. Fortunately, I did find a doctor who listened, and who made astute observations about the nature of my own flutter that were far more in alignment with my own experience and history than those of the first doctor. I was placed on medications, was given a referral to a specialist in congenital heart defects, and further tests were scheduled. Everyone assumed I had lots of time, that I was stable, that this was a problem that had developed slowly over time, and that there was no rush. I was more than willing to believe this was true, willing to believe, even as a niggling voice in the back of my head kept saying “no”. It was possible I had experienced brief, intermittent bursts of flutter over the previous year, or years as I had been released from cardiology long ago and nothing suspicious ever showed up on annual physicals or routine EKGs. Declines often occur so gradually that we unwittingly accommodate ourselves to them. But I also knew that I had been walking several miles a day, digging hard in the garden, working hard, until sometime in mid June when I was suddenly unable to do so. Some part of me knew I was unstable, and so I would hold on tightly to those times when I would suddenly feel better, and do as much as I could when I could, with an air of desperate determination, the remnant of some lurking fear, which I know to be untrue, that worth is determined by accomplishment, some fear that I would leave a mess….
I knew I was not getting better. I knew my pulse was too high, was unstable, that I was tired all the time. I knew that I was not myself, that I could not write, not even letters to friends. I was not sleeping. I was not managing even the bare minimum of what needed to be managed. And yet I put on a brave face because that is the way I was brought up, and it is an inescapable part of my nature. I worried that I was not going to be able to hold on until I saw the specialist. But I was determined to try. I was holding out for the echocardiogram, scheduled for September 10th , 2 months after my nose surgery, two months after we discovered I was in flutter.
On the 10th I went in for the echo, and my cardiologist realized that beta-blockers were not keeping my pulse or blood pressure in a manageable range. Just lying on the table, my pulse was 157, dangerously high for my age, especially for doing nothing, and I was showing all the signs of heart failure . As the technicians fluttered and fretted, and ran more tests, I was both agitated and calm. Agitated because I had two busy days scheduled, but also secretly relieved, because I already knew, through the wonders of modern technology, that my sleeping pulse had become higher than my full-on gym-workout pulse had been merely 4 months previously. My doctor was located; I was sent to the hospital where I met the specialist and was scheduled for the procedure the next day.
I worried that I had not made the bed that morning. I worried that the bathroom at home was not clean. This was reasonable because these were substitutions for allowing myself to worry about myself. There is something to being told you are in heart failure to bring on a sudden and permanent change in perspective. All those choices I had made about minimum things to be done each day, seemed simultaneously trivial and desperately important. I canned tomatoes because I had tomatoes galore, but I didn't vacuum. A friend told me that if I hadn't been canning tomatoes I wouldn't be in heart failure, which I recognized as nonsense, her own fear talking. I could stand in the kitchen, although not for long, but I couldn't walk, even to the end of the driveway without risking falling over. And I spent a lot of time on the sofa numbly staring at the TV. I realized that canning and gardening did not cause the problem, and were not even, technically, denial. The act of producing something was an act of promising myself that there was a future, and that I would indeed get there, a promise I desperately needed.
The ablation went well. It was not standard. But I understood that when I spoke to the interventional cardiologist. We spoke extensively about my history, about the atypical patterns seen on my ekg and echocardiogram, about the various options and the risks. As I mentioned, I still have a congenital heart defect, which required surgery when I was 37, but a repaired heart is not the same as a normal heart. That hole was in a rare and unusual place (lucky me), and that atypical repair was as instrumental in my atypical flutter as I suspected when I saw the first cardiologist, the one who had not listened. There were no promises that this would be the only procedure needed. That second day in the hospital, alone and waiting for my procedure, I let go of all those crutches and felt simultaneously desperately alone and frightened, but also relieved because I already knew that the fact that I was there was in and of itself hopeful. To wait would have been disastrous. When I awoke, it was the first time in two months I did not feel like I was being pulled slowly downward into quicksand.
Alas recovery was slower than I had hoped. Two months of being pulled downward left me weak. The first two weeks after surgery were a struggle. I was still on beta blockers. My heart rate seemed, initially, to recover, but my pulse grew slower, going from abnormally and inefficiently high pre-surgery, to abnormally and inefficiently low, until by the end of the second week I struggled to get my pulse to rise above 50 even when climbing stairs, which was about the biggest effort I could expend. When I went in for post-surgical follow-up, my cardiologist was rightly concerned. He considered readmitting me for further testing and a possible pacemaker, but admitted that I looked fairly healthy. Instead I had blood work and an echo, was taken off the beta blockers, and told to come back for repeat testing in three days. I was also told to go to the ER if I had a single dizzy spell (I did not). Three days later, with reassuring test results, and another long conversation with my caridiologist, I was released to begin walking again and to slowly resume normal activity, released with cautious optimism, although I am being followed closely to make sure that I do indeed continue to heal.
My days are still slow. I sleep 8 or 9 hours a night, and I often take a nap, anywhere from half an hour to two hours in duration. As long as I still sleep I do not worry about this. Yesterday I increased the distance of my walk from a round trip of 1/2 mile to 3/4 mile, and reduced from three walks to two. The second walk is being replaced by a moderate floor exercise and stretching routine, which still wears me out, but which is doing wonders for my back. I am still knitting the lap blanket that I was working on earlier in the summer, although I am enjoying the process. It too is taking longer, like everything in my life right now.
But neither what one accomplishes, nor how long those accomplishments take, has any bearing on who one is, on one’s worth as a person. I know this but I don’t always accept it. I have learned that if I congratulate myself on doing something, I also have to remind myself that the actual doing is irrelevant in the grand scheme of things. Otherwise, I am surreptitiously feeding that old inner demon, the one who says “never good enough”. I am also learning that thinking of myself as “architecturally unsound” is a kind of double-edge sword. Denying that a congenital heart defect is also a type of congenital heart disease, much like denying that my scoliosis does not come with disabilities, is, another back-door way of feeding that inner demon, a way of telling myself, without meaning to, that broken things are less worthy. It does not mean the life as lived cannot be a good and full life, even a normal life. In fact, I increasingly think it is the breaking and the mending that make life full and good, that make life normal.
On my birthday I was thinking about what I wanted to do with the rest of my life, about what was really important. I know it is impolitic in America to think of 62 as old. But it is, at least if I am thinking strictly mathematically. In all likelihood I am in the last third of my life. And therefore I am old, old enough to know better, old enough to seek wisdom, old enough to decide that I can live according to what is important to me, other people’s opinions be damned. If I live to be 94, I can look back and tell myself I was premature in judging myself “old” too soon. But old does not have to be decrepit. I think I am choosing to look at aging much like I look at Autumn, as a time to let go of the extroverted forces of rampant expectation. I didn’t know the first quarter of my 63rd year would be such a trial, but now that Autumn is here, I embrace the metaphor. I embrace my own autumnal years. I weathered my own personal fire; there may be some smoldering embers lying in wait, some future blazes, but I am also ready to revel in this autumnal stage of life, a stage not of dying but of perhaps choosing what is important, letting go of the rest, and letting my colors show.