This is where I get excited about my life. Or depressed, or confused, or any of the things that make me tick. Speaking of ticks, I was bitten by one in 2014 and contracted Lyme disease, but didn’t start treatment until mid-2015. Big mistake. I started this blog to talk about how I found joy while living with Lyme. Now I am trying to live life AFTER Lyme, if there is such a time. Like all things worthwhile, it ain’t easy.
I love the etymology of words and phrases. Yesterday, I wanted to say “on an even keel” in Spanish and struggled to explain what that meant. Two of the students are men in their twenties, and the instructor is a Puerto Rican woman in her twenties. Idioms are lost on younger people now (not all, I’m not trying to start a generation war). Many idioms endured for centuries, but the context has been lost. Not so for “on an even keel.” Boats still have keels, and sailors like them to stay even.
These days my goal is to stay on an even keel. That means different things to different people. When I was young, I didn’t know my mom’s devotion to order and structure kept our house on calm seas until I was older. All I knew was that when I left home at 17, my life was most definitely not on an even keel for a long time, both physically and mentally. It was difficult for me to figure out what I needed to have that sense of balance and stability.
College was one big choppy chaos. I moved often, had no firm schedule, and didn’t care. However, as school came to a close, I looked for a way out of that chaos, and chose marriage. I don’t know why I didn’t have the cojones to forge out on my own, but I didn’t, not back then. I think I wanted to be rescued, or share the burden, or some such nonsense. Of course, this did nothing but add more chaos. I don’t think I felt on an even keel until Katie was born. A newborn baby is hardly an even keel, but for me it was the first true source of stability in my soul.
Over the next years, I discovered how to create my own calm seas, both for Katie and myself. I learned that for me, making a home went a long way towards alleviating chaos and stress. Inside, though, I was still not on an even keel. I was constantly fiddling about in a vain attempt to make someone else happy. It wasn’t until I divorced that I realized I’d been off course for years and years and years.
Even after I got Lyme and was terribly ill, I felt more at peace than I had in the last thirty-five years. I think many times people mistake (or hope) that having things, or having a busy, scheduled life is the same as being on an even keel inside. They usually aren’t, as I suspect many people learned after this long year of COVID. Inner turmoil and unhappiness will find a way to burst forth, and if there is no deeper sense of balance and happiness, things can go south in an instant. BTW, “go south” is an interesting saying, with no clear source. Could be from Native American’s euphemism that to “go south” is to die, or from the notion that if you committed a crime in the 1800s, you could escape the consequences by “going south” and crossing the border into Mexico.
For me, Lyme gave me stability. I had no other choice, but it’s true. I had to find a balance to give myself any kind of life. A funny thing about a chronic illness: any pretense is stripped away, and if you don’t like what you see, you’ll never be on an even keel. I’ve worked extremely hard to figure out what makes me happy, what I can live with, and what I can change.
Your balance might look entirely different. I’ve known people who thrive on pressure and constant change. I’ve known people who have everything going for them and are never in balance. Being on an even keel doesn’t mean everything in your life is going well. It means you’ve gotten your boat in tiptop shape, you’ve learned how to navigate rough water, and you manage to keep your boat relatively stable, at least until you it calm waters once again.
Now that I have that straight in my mind, I can weather any storm. I can even find contentment where others would see nothing but a big old storm bearing down on them, with no chance of not capsizing.
Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.
At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull. I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.
After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.
At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.
I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.
The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.
I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.
Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.
Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).
My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.
Since I have been on the subject of herbs, I might as well talk about my favorite herb. I have a long and complicated relationship with marijuana. Sometimes she’s my bitch, and sometimes I am hers. Mostly it’s a solid, happy union that makes us both happy. Since legalization, I’ve been able to choose what strains I want, much like going to a liquor store and deciding if I want tequila, rum, or scotch.
I smoked for the first time when I was twelve, with my brother and his friends, on a Tuesday night in Covington LA when my parents were attending the symphony. We stood in a circle in the driveway, and I remember that sense of being included with the older kids. It did nothing. The second time, I was thirteen, at the base of the dam at Evergreen Lake. It was fucking freezing, and the snow was deep. That time, I felt something, and I liked it.
Later that year I also had my first paranoid moment while high. We had smoked while caroling in Hiwan Hills. We ended the night at someone’s house on Meadow Drive, near Hiwan Ranch. Their parents had an open house night, and there was a nice spread of food. I remember feeling overwhelmed with the colors, the people, and the food. I didn’t want to talk to anyone, but I really wanted one of the rum balls. One of the grownups came up as I was reaching for my third or fourth one and started talking to me. I’ve never forgotten that moment of utter panic as I tried to form coherent answers to his questions.
Once I moved to Kingwood, I found a group of kids who liked to smoke and drink. I never smoked before or during school, nor did I smoke on school nights. On the weekends, I smoked whatever I could whenever I could. Here’s a fun fact: I never bought pot until 2014. Another fun fact: I’ve never rolled a joint. In the ’70s and ’80s provenance of supplying and preparing pot was a mostly male one. I’m sure some of my girl friends bought and rolled because they wanted to have it for themselves when they wanted it, but I was content to let boyfriends and other guys do all the work for the pleasure of my company (Ha! Totally doubtful, but I guess it worked).
It was when I went off to UT Austin that I really started smoking in earnest. My freshman year, I was high every single day except Christmas Day. Back then, what I was seeking was…I’m still not sure. Pot relaxes me, and shuts down the constant chatter in my mind. Kind of what alcohol does for a lot of people, but without the calories or hangover. I get horrible hangovers from not much alcohol. After that crazy year (it was so much more than smoking pot. Things were consumed. Risks were taken. Stupidity ruled.) I worked to find balance. I went months, even years without smoking. I slowly gave up drinking. I cleaned up my lifestyle. When I went off to Bennington, I was an occasional drinker, and had decided not to smoke at all while in school.
Katie and most of my friends who smoke consider me an absolute flyweight when it comes to smoking pot. I say I smoked everyday, but that is one or two hits off of a pipe that wouldn’t even get most stoners a mild buzz. I don’t know if there is a term for being a cheap stoner, but I am one.
Then came Lyme. Fortunately for me, I had gotten a medicinal license back in 2009 and kept it up, more to make a political statement than any urgent need, other than an achy knee. After I got sick, I couldn’t sleep, everything ached, and I was depressed as hell. Katie took me to the dispensary and I got a daytime strain and a nighttime strain. They worked so well I never needed painkillers or sleeping pills. Of course, I was stoned 90% of the time, but I was sick 100% of the time during that period.
Right now, I am in a nonsmoking phase. It was too much trouble to worry about bringing anything to Arizona and I was feeling good. I have times where I wish I had some, but then I look at the map and see that I have to drive half-way across Tucson, and they only have eight strains, and the prices are astronomical so I decide I can wait. I may never go back. I may become an occasional smoker. I may smoke every day again. Like I said, we have a complicated relationship.
People are often amazed by how many herbs I use for Lyme treatment. Our medical community has done a fine job of discrediting the use of herbs to treat many illnesses effectively. I think people imagine me wandering down the aisles of Whole Foods or Natural Grocers, picking up things that will help me with little clue other than ‘I heard it might help’. I do buy herbs or supplements like this, especially for sleep, but not for Lyme. The fact is, any LLMD worth their salt will attack Lyme using many different methods, including herbs. Some herbs are better for one thing, and others are better for another. I buy the herbs I need through my LLMD. Usually, they are proven protocols cited by leading authorities in the field of Lyme, like Dr. Richard Horowitz, or Steven Buhner.
So when something flares up, we (this is not the royal we, Lyme patients have to be adept at describing what is happening) have to evaluate what strategy to use and why. It might be bartonella, or an opportunistic secondary infection, or a return of babesia. There are several possibilities and one medicine does not fit all.
Anyone who thinks herbs aren’t ‘real medicines’ needs to wake up. Aspirin, digoxin, quinine, and morphine are just a few drugs derived from herbs. It’s no wonder drug companies have an active interest in suppressing herbal medicine. I can see some people rolling their eyes, envisioning the very thought that herbs or supplements have any place in medical care. Fine. I don’t care. Trying to convince someone that this is not true is useless, as is trying to convince people who think all pharmaceuticals are bad, or ‘not natural’. To me, both positions show a profound unwillingness to place results over beliefs.
This is not new. It’s as old as the art of healing. With a complex disease like Lyme, the push and pull between science, traditional healing, and other factors like diet, exercise, and religion, leaves most Lyme sufferers with far too many options. The cost of treating Lyme means many patients don’t get proper treatment. Insurance usually doesn’t cover much more than 30-60 days of doxycycline.
This is compounded by the belief that illness and/or ill health is an option, that your lifestyle or lack of discipline is to blame for your illness. Not everyone believes this, but in wealthy countries like America, there are groups who frame illness and ill health as a failure to a) pray enough, or b) not exercise enough, or c) not take enough supplements, or d) not have the right healthcare and/or not visit the doctor/get tested. There are probably a lot more subsets, but it is a strong system of ‘blaming the ill’.
But I digress. I am at a stage where I rely mostly on herbs. If I have a severe relapse, I’ll take whatever is recommended to get back to health. I’m not a snob. Nor am I a fool. Lyme support groups online are filled with ‘miracle cures’ and also with long, long sagas of literally dozens of tests, doctors, and medical treatments. I don’t have to go to the doctor every time I feel out of sorts, or have a new symptom. I won’t jump on the Rife machine bandwagon, or coffee enemas, or whatever someone has said worked for them. However, when dozens of other Lyme sufferers say there is something new that might work, I’ll ask my LLMD when I have an appointment. Dapsone is one such pharmaceutical that has made a huge different to some patients. Stevia is another one when it was found to be a biofilm buster.
It really is a lot of work staying current with treatments and protocols. I have biases. Maybe coffee enemas have helped some people. I’m just not a fan of any enemas, so I’m not going to try that one. You won’t ever find me praying to get better, but I don’t mind if people say they are praying for me. I actively avoid going to the doctor for the little things, and that a might come back and bite me in the butt someday. I’m willing to take some risks as a tradeoff, as are almost all ill people, because a life spent striving for perfect health might not be living at all.
It could be said I take a relaxed approach to my illness, if that makes sense. Obviously this isn’t always possible. One of the luxuries of Lyme (Haha, like there really are any) is that when it is controlled, it’s not likely to kill you, at least not for a long, long time. So I take my herbs, as I did this past week, when I had a flare up. The herbs caused a herx (Jarisch-Herxmeimer reaction, or ‘when the cure makes you feel like shit’) as I knew they would. They also made me feel better, as I hoped they would. When that happens, I wake up feeling better. The clouds part and the sun shines and all is right with the world once again.
I haven’t been hospitalized, nor have I used IV antibiotics. I feel well a good deal of the time. I have accepted that perhaps Lyme will be with me always. I use herbs and pharmaceuticals. Perhaps one day Western medicine will become more flexible about how to heal their patients. Until then, I’d say my choices have been right for me and I stand by them.
I got the Johnson & Johnson COVID vaccine this week. Surprisingly easy, except for the questions. “Have you had any COVID symptoms in the past week?” “Have you had muscle aches, fever, or fatigue in the past 24 hours?” Ummmm…yes? I’ve learned to lie when asked these kinds of questions. It’s not technically a lie, but the explanation of Lyme is too lengthy to go into. It’s more of an omission. I easily separate Lyme from the rest of my health history. If someone asks me if I’m healthy, I say ‘yes’, because I am healthy, aside from Lyme.
Most people my age are on some kind of prescription for something. Blood pressure, cholesterol, thyroid, etc. Not that they aren’t healthy, but they need a little help. So far, I have none of those problems. The ol’ colon is clean as a whistle, the boobs lump free, and no weird moles or skin things (thank you, birth mom for my genes, and real mom, for making me wear sunscreen). My blood pressure is always 116/72, my pulse is in the 50s, and my weight is still teetering a few pounds shy of ‘mildly obese’. So yeah, I consider myself healthy.
And yet, almost every day there is something that hurts or doesn’t feel right. The brain doesn’t fire properly or my throat hurts, or my joints, or my eyes are blurry and irritated. I’m fatigued, or my body aches. There are a ton of other minor problems that come and go, like death from a thousand paper cuts, but none of it is a big deal to me anymore. It just is. Once, while at an appointment with my Lyme doctor, I mentioned some things that had been bothering me. He said, “Why didn’t you call or go to your primary care doctor?” I answered, “Why bother? Almost everything that goes wrong is Lyme-related and disappears or changes.” He agreed with that, and I’ve learned that I’m the one that has to separate how I’m feeling. I use two categories: “Lyme-related” and “getting old.”
I suppose there is a third category, the “Oh shit” one, but so far, I’ve been out of that column since I burned my right hand six years ago (I think it was six years ago, but I just got my daughter’s age wrong, so I can’t truly be trusted with anything time and date related). The thing is, through Lyme I’ve learned that people tend to freak out about their health far more than I do. I haven’t gone to a primary care doctor since that burn, because I haven’t needed to. Virtually everything wrong with me is Lyme related.
As far as COVID goes, many of us Lyme patients have had to play the really fun game of “COVID or Lyme?” After all, the early symptoms for COVID and ongoing Lyme symptoms are virtually the same. I usually allow myself about five minutes to assess how I feel and then I wait to see if anything changes. It usually does, either within hours or days. The pain migrates, disappears, or morphs into another symptom that has nothing to do with COVID.
There is another dimension, the question of how vulnerable Lyme patients are to COVID. My immune system is compromised, but how vulnerable am I really? I chose to stay safe and isolate myself rather than find out the answer to that question. And I chose to answer the pharmacists’ question as it pertained to COVID, not Lyme. The week before the vaccine, I had been experiencing some old symptoms that I knew well. I had already contacted my LLMD and gotten the answers I needed to begin treatment. I had no fever and I wore a mask. I know my body very, very well and had no doubt that what I was experiencing was not COVID. So I went and got the vaccine.
And after the vaccine, I don’t know if I had a reaction to the vaccine or if it was Lyme. I guess that part doesn’t really matter, since it wasn’t going to change the fact that I had gotten the vaccine. Now I have some measure of comfort that if I were to get it, I won’t die, or have to go to the hospital. Those are big things, especially for the chronically ill. We are always on the edge of a health care crisis. They always cost money. The last thing I need is one more.
I’ll continue to separate my general health from Lyme. This paradigm has, oddly enough, motivated me to take the best care of myself so that I can so I can continue to brag that aside from Lyme, that “I’m very healthy.” Diet, exercise, and positive thinking are the only controllable factors I have. If Lyme is the reason I am staying healthy, then that is one of the positive aspects of chronic illness, and that, my friends, is positive thinking.
I watch over myself like the guardian of a high-powered executive. Although the pay sucks and I’m anything but high-powered, I like to think I’m a pretty good gatekeeper. So I hoard my energy, get my rest, take the various drugs/herbs/supplements that are working at the moment, take care of the everyday tasks to be comfortable, and inspect myself endlessly. How am I feeling? Good so far? I’d better do the laundry, take a walk and write while I can. Still good? Great! I can go grocery shopping or keep studying Spanish.
Most days I lie down in the afternoon. Sometimes I take a nap. Other times I lay on my back and think. Sometimes I just play FreeCell for twenty minutes. Some days I don’t get up for hours. It all depends. And when it comes to a social life, I’m more like the harried chaperone of a future princess who would rather screw the stable boy (I know this is sexist and old-fashioned, but I can’t come up with anything better at the moment). Literally the only two people I will drop everything for are Dad and Katie. Everyone else will have to wait. Don’t fret, I don’t make people wait for long, unless I’m really sick and have turned off my phone and turned out the lights. Otherwise, at the very least I will text: Not feeling well. Talk to you later.
Needless to say, this looks a little hinky if you don’t understand what living with a chronic illness is like. It strains old friendships and puts a damper on new ones. But I’m the guardian of this body and mind for as long as I’m alive, so I have to be vigilant. And the one thing that gets my hackles up is when anyone thinks this is a choice. If by “choice” you mean conscious decisions to not expend energy that you don’t have so you don’t feel terrible, then yeah, it’s a choice.
The difficult part is acknowledging that some people require more of your energy than others. That’s good and bad. Sometimes the person works with you and you dread interactions because it is exhausting. I know plenty of people who feel that way about their parents. I have friends I love to be with, but we have so much fun that again, it can be exhausting. I don’t like this new habit of weighing every single activity and social interaction in units of exhaustion. The very act of sifting through all of this takes energy.
That’s another thing that’s hard to explain. From an outsider’s perspective, it looks like I’m doing fine. “Well, you took a walk this morning and attended a Zoom class, and you don’t look sick” means that I am doing a great job managing my energy. What they don’t see is all the things I didn’t do so I could do those two things.
One of the many ways Lyme sucks the energy right out of you is through social interaction. Texting is great. Emails are great. Talking on the phone is problematic, depending on how I feel and who it is. Zoom calls and classes are stimulating and tiring. Seeing people is always exhausting and I have to weigh what else is going on in my life before I commit to anything. If I have to go grocery shopping and then see a friend for lunch, it is near impossible to see people later, unless I’m looking forward to doing nothing for a few days.
I fight with myself a lot, the guardian clashing constantly with the part of my brain that wants to do whatever it wants. ‘Go ahead,’ it says, ‘eat that gluten-filled pizza/swim another 500 yards/go see that friend/take another writing class/go out late with friends/quit being such a BABY’. The guardian steps in and reminds me that this might not end well. Sometimes I simply don’t have a choice, it is something that I must do, like travel between Tucson and Denver, or go to the doctor. Then I make sure I have blocked off plenty of time before and after to rest.
This strategy means that currently I am more well than sick, the relapses farther apart and less severe, the recoveries, if not easier, more bearable. This is good, right? Mostly, except when well-meaning people comment that ‘now I can get back to normal.’ It used to vex me, too, this idea that I’m doing so well I can go back to how it was before. But that’s the whole fucking point! This is my normal now. I will always be forced to plug any activity into the energy formula. If I don’t mind anymore, why does it bother other people so much?
I would argue that it is precisely this energy output strategy that has led me to my current state. The tougher my guardian is and the more time I spend taking care of myself, the better I feel. Now that I have given my guardian full control, taking care of me first has become easier. I still argue with her. However, I know my guardian is the one I have to respect. She is one mean bitch, but she always has my best interests at heart.
I have had some vivid, amazing dreams lately. Animals visit me regularly in these dreams. So far, I’ve had dreams with turtles, snakes, elephants, bees, cats, frogs, and dogs. At first, I just bored Katie with retellings of these dreams. Her advice was to look up the ‘meaning’ of the dreams. Well, I did. Let me tell you, this branch of arcana is a rabbit-hole (pun intended, although they haven’t made an appearance yet) you might want to avoid.
A quick caveat: I haven’t smoked or ingested pot since mid-September. Not that my pot habit was particularly large. I usually smoked on cleaning day, or when Lyme made it impossible not to. Anyway, those of you who have ever smoked regularly and quit, you know how dreams rebound. Researchers think that pot inhibits/suppresses REM sleep, but who really cares about the whys.
I am a lucid dreamer. I go back and change the trajectory of a dream if I don’t like it. The other night I dreamt I went to a class reunion (don’t even get me started on what the hell that meant) and I noticed it was nothing but a bunch of old people, and we weren’t dancing. Well, I didn’t like that dream. So I changed it. The first dream was probably the way it is. The second dream was straight up memory from an earlier reunion, where we were packed together dancing to “Brown Sugar.” Much better.
I also have recurring dreams, some I’ve had since childhood. There are two houses that I know intimately in my dreams that don’t exist in my real life. Lots of stuff happens in them, and I’m almost always stressed out when they appear. They obviously represent a place I don’t want to be. I haven’t had any dreams with those houses in them in a while. There have been new dream houses, but obviously temporaries. The other night the house was a dorm of some kind, chilly, modern and all-white. It was dark, cold and rainy outside and the windows were massive and uncovered. Running on both sides of the house were dogs, like all the dogs in the area had come together and were trotting with purpose towards something. I wasn’t disturbed or scared, other than the Stephen King-like disquiet of so many dogs. Occasionally a dog would turn and look at me with a look that said, “Come join us.”
Dreaming of animals is a newer thing and quite different for me. Oh, there were the times two of my dogs visited me in the days after their deaths, or the time I dreamt I had a frog on a leash (hey, it was grad school. I also dreamt my fingers got chopped off and I’m a writer, so…), but rarely have I dreamt like I have in these last months. I’m usually too stunned by the bizarreness of these dreams to change them. I watch them unfold slack-jawed, except for the emotions that course through me: peace, rootedness, amazement, comfort.
When I started looking up the meaning of these animals and my dreams, I learned there are a LOT of people who are looking for interpretations of their weird dreams. There are also a lot of people out there ready to help. Like astrology, the language and meanings are loosey-goosey, open to whatever you are looking for. And like astrology, I don’t believe that dreams should be interpreted literally, or that such interpretations should be mistaken for absolute truth or real-life decisions.
On the other hand, my brain is going through a lot, apparently. My subconscious is very busy at night. Sometimes I believe it’s trying to make sense of the things that I don’t want to deal with. Other times I think maybe it’s just fucking with me, teasing me with the most ridiculous and mundane images possible. A little entertainment from me for me. Haha. Joke’s on me.
Almost all of my dreams have optimistic interpretations: personal happiness, overcoming your problems, being at peace with yourself, good luck, strength, and transformation. I guess my next questions would be, why does my brain feel the need to do this to me? And why is it so relentlessly optimistic?
It is possible that I resist giving myself credit for my own personal strength. In fact, I try very hard to avoid all thoughts of the circumstances that have forged that strength. Instead of congratulating myself on finding meaning and contentment in a drastically altered life, I focus on what needs to be done now. It seems a lot easier than thinking about my life or my inability to change things like COVID or Lyme.
Also, I don’t have the extra energy to contemplate anything more than what I choose to do, and I don’t choose to consciously tell myself how fucking great and strong I am. So my brain has chosen to do that for me in the only time I don’t control it. In essence, I’ve outfoxed my own self and become my own cheerleader through my dreams, because I can’t do that when I’m conscious. I hope all of you have such wily brains. These dreams are a lot of fun, and in their own ways, quite comforting.
Is there a word for female curmudgeon? The formal definition is a “bad-tempered person, especially an old one” and is unisex. I’m not one yet, but I’ve been flirting with the possibilities of allowing myself the luxury. This would require energy, maybe more energy than the daily decision to find something good about the day. That is the choice these days, isn’t it? I don’t know about you, but most days find me on a roller coaster of highs and lows that I’d rather not experience. I’m more of a lazy river kind of gal, and yet the universe has strapped me onto the Tower of Terror.
Pre-COVID, I would have done some the things that kept me cheerful while sick with Lyme: museums, movies, visiting friends, and the occasional trip. This is by no means the whole list, but it’s the one most affected by COVID. Joni Mitchell had it right, “you don’t know what you got ’til it’s gone.”
I have deep, strong inner resources. I’ve had to, with the challenges life has thrown me from an early age. This isn’t the place to get into that, but those of you who know me know that no matter what, I manage to see hope and joy in anything. Lately, though, curmudgeon-ness, or at least the freedom to let oneself become a grumpy hermit, happier alone than with people, is quite tempting. There is a word for this. It’s not even German! Apanthropy: An aversion to the company of men; a love of solitude. I suppose we could quibble about the use of ‘men’ in this sentence, but you get the gist. That’s what I’ve been experiencing, and it’s blossomed under the rich fertilizer of COVID.
The main problem with this scenario is that I’d actually have to say really shitty things aloud. I think this is one of the requirements to becoming a full-fledged curmudgeon. It could be this is why curmudgeon is associated with men more than women (don’t fight me on this. You know I’m right).
Although I care much, much, less what people think of me, it is not in my nature to hurt people, whether they are strangers, friends, or family. This may prevent me from earning the title curmudgeon. I’ll never say never, though. I could become one of those mean old ladies who says exactly what they think.
The pandemic has been hard on virtually every person I know. It doesn’t seem to matter if you are angry at having to wear a mask, or sad that you have lost loved ones, or sick of being isolated, or missing loved ones. I’m not sure any of us can comprehend what we’ve endured yet. I do know it has made me less tolerant. Things that would just slide by irritate the hell out of me, and it doesn’t seem to matter who or what it is. I’m positive I irritate the hell out of people, too. Our national zeitgeist is one of emotional exhaustion. I just had a head start on everybody else.
Most people are new to social isolation, being alone with themselves, or being forced into sharing close quarters with the same people for days, weeks, months on end. Our ability to move, to go anywhere is one of the privileges of living in a wealthy democracy.
Six years ago Lyme forced me to re-evaluate this privilege, but I was no stranger to being alone. I have always been content to be alone, and as the youngest child, that is a good thing. Both of my brothers were out of the house by the time I turned thirteen. My cousin Ginger lived with us for a few years after her parent’s divorce, so it was the two of us for a little while. From my sophomore year on, Mom and dad worked full time, so I was alone before and after school. I reveled in the solitude, happily eating dessert for breakfast, blasting my music and dancing with no one to bother me. I was never afraid, because at that time we had Charlie the Great Pyrenees who would have killed anyone who threatened me. I don’t say that lightly. Anyone who knew me then and came to my house could tell you how scary he could be.
I’m sure I was lonely at times. Who isn’t at that age, especially if it was a Friday night and you thought everyone else but you was out having a magnificent time. But even then, I had things to do. I read voraciously. I listened to music constantly. I tried sewing occasionally, and I baked things when the spirit moved me. I didn’t mind my own company back then and I don’t mind it now.
Then I got Lyme. Or rather, I’d had it for over a year and didn’t know it. When I started treatment, I was so sick I barely noticed my isolation. The first three years were the worst. I’m sure I lost friendships over this period, because virtually all of my energy was consumed with taking care of myself. I may have been a little prickly during this time. Really, who could blame me? People had no idea how I could be so sick for so long. Reconciling myself to chronic illness and trying to educate the people around me made me extremely grumpy.
And I grew used to being alone. Not just, you know, a day or two, but days and weeks of alone. I anticipate that the biggest problem for me in life after COVID will be returning to a social life, as in, will I want to? It’s hard to imagine the anticipation of going to, say, a new exhibition at the art museum, or a concert at Red Rocks. I’m pretty sure I’ll be excited over these things once again, I just can’t quite picture it. For now, though, I’ll put my scanty reserves into holding my tongue and trying to see the positives.
I railroaded my dad into letting me move in with him this past September. It seemed like a good time with COVID and lockdowns and my continued journey with chronic Lyme. The original plan was to sell my house, move in with dad for a while, and later on, move to Costa Rica. Then came COVID and a radical change in plans. I kept my house. Katie is living there and taking care of everything. Keeping the house was more of an emotional decision than purely financial. It didn’t (and still doesn’t) seem like a good time to take risks.
Isolation was wearing on everybody by this point. I had stopped writing, unable to draw on any of the emotional and mental strength writing requires. I was sick of Lyme, sick of COVID, sick of myself. There was no life-guarding or teaching swim lessons.. Airbnb had ground to a halt. Strangely, none of these things particularly bothered me. Trying to help dad solve his everyday problems with his computer, or his phone, or some mail he received, that bothered me.
It would have been about time to go for a visit without COVID. The more I thought about it, the more I realized that I should be down there for a much longer stretch of time. Not anything concrete or pressing, just a feeling that we could, and should help each other through this time.
My best friend Laura ( I can say that, right, Laura?) needed a break from sheltering with the four males in her household and offered to drive me down to Tucson. We set out the day after a freak September snowstorm and arrived in Tucson late in the afternoon the next day for my 14 day quarantine. Our first place was a tiny condo across the street from dad with NO WIFI. I cannot stress this enough. NO WIFI. We got another place and saw my dad every night outside with masks on.
I moved in the house on the 15th day. Dad had cleaned and moved his office out of the room next to my bedroom. This visit was very different from earlier ones. We were going to co-exist for a long time. I truly appreciate his willingness to turn over parts of his house to me, allowing me to make them functional for myself. There was another person in the house, though. My mom has been gone for ten years. Most everything has been left the way she liked it. I helped dad go through a LOT of her things after she died, and we got rid of the things that accumulate in illness and old age: blankets, medical equipment, assorted kitchen things that haven’t been used in years, and knickknacks that must have meant something to someone at some time. We never really moved any of the furniture., though Dad had moved a few items out of his bedroom and rearranged the den and his office, but that was it.
This was more cataclysmic. My mom was precise. Not house proud, exactly. Everything had it’s place for both aesthetic and utilitarian purposes and it was to be kept like that. I felt like I was thirteen again, rearranging my room late at night, knowing mom would not be thrilled.
The kitchen was where I started first. Dad, like many widowers, had adapted to a simple kitchen routine: coffee, OJ, English muffin and sausage for breakfast, granola and milk or a sandwich for lunch, and either crackers, cheese and fruit or a frozen dinner for dessert. He used few of the many things in the kitchen. I started small, rearranging the pots and pans and cleaning out the pantry. Then I forged ahead and went through the cabinets. So many mysteries! Why were there so many mismatched storage containers and lids? Why did we have three candy thermometers? And the biggest mystery of all, why did we keep spices from at least the 90s?
There must have been about thirty containers. I took a photo of some of them. Note the labels and prices. When was the last time you saw any spice for .57¢?
After I cleaned out the spices, I found it easier to change things in the house. I’ve rearranged my bedroom and office. I’ve added plants. The pantry and the fridge are well-stocked, just the way I like it.
We do pretty well, all things considered. Dad’s small retirement community has been and is very isolated, the threat of COVID moving through the community a powerful impetus to not gather or go out. Zoom classes don’t come close to filling that gap. Sometimes, like in my Spanish class, it highlights the differences in how people act during COVID. The three people under thirty have done the bare minimum in terms of isolating and social distancing. They talk about their travels and adventures while the three of us over sixty listen. We don’t do much at all, except go to parks or drive to pick up groceries, or go to appointments that can’t be avoided.
Sometimes I get frustrated when I see how differently people act during the pandemic. I can’t work up too much anger, though. I would probably do the same if this happened when I were much younger. It seems to me that it’s easier to hunker down at home and keep busy when you’re older.
At any rate, I can’t control what other people do. I can only control me. So I write, read, hike (a LOT), cook, clean, and keep trying to learn Spanish. I get depressed, I have relapses. I try not to think about when everybody else goes back to normal and I’ll still have Lyme to deal with. I think about letting go of the illusion of control to gain control, a futile, koan-like pursuit that so far, has not given me any intuitive enlightenment or tranquility.
I have done everything that I can do to protect myself and Dad from COVID and from the crushing loneliness self-isolation brings. Next week the Australian Open begins and we’ll watch tennis together, something we’ve both missed far more than I would have thought pre-COVID. We’ll continue to do our best to get along. I’ll ponder the fact that I have become my mother about many things. And then I will return to what I’ve learned best in the last six years with Lyme: the full-time business of coping.
There is truth to the adage Johnny Depp quoted in “Pirates of the Caribbean”: “Crazy people don’t know they’re crazy”. Whenever Lyme is flaring up, I am always slow to realize it’s happening. The first signs are the same. Aches and pains, headaches, a heavy fatigue, and a brain that skips and skitters. Obviously I ignore them all. If my balance is off, or I drop things, well, it’s because I’m tired, or stressed, or hungry, or too cold, or too hot, or not thinking. Ahhh, the not thinking. I NEVER think I’m not thinking. Instead, I have days like yesterday and today.
I went for a walk early in the morning, when it is cool. The bottoms of my feet throbbed (a strange, but telling sign of a bartonella flare up) and I fumbled and dropped the dog’s leashes more than once. What else did I do? It is the day after that I write this, and I can’t fucking remember what I did yesterday. Another sign I conveniently shove aside. Oh, right. I cleaned the kitchen, vacuumed, and mopped the floors. Then I studied Spanish for today’s class. Did I cook? I don’t think so. I did do the Sunday crosswords. I do the NYT, LATimes, and Washington Post Sunday crosswords. Don’t be too impressed, I’ve been doing them for years.
My friend Kathy Fernandes and I used to do crosswords together waaaaay back in 1978. I struggled mightily back then, but now, on a good Sunday, I can complete all three in under an hour. Jesus Christ. I’ve been doing crosswords for over forty years. I’d better be good at them. So. I did those things, and read a little. Still hasn’t dawned on me that I’m not thinking clearly.
Today I walk early again, without the dogs. I drop off my ballot for tomorrow’s primary at Lakewood’s City Hall, a short ten-minute walk from my house. I come home and let the cat out into the back yard. Oops, the neighbor’s cat is in our yard and Esme streaks away, chasing the other cat. I call out to her, as if she were a dog and would listen. I debate on whether or not to call Katie and tell her the cat is gone. In the time it takes me to check the front yard and walk back through the house, she’s reappears, licking her paws and looking quite pleased with herself.
I check my email. An invoice I paid yesterday has bounced back. I didn’t enter the correct information. I drop a bowl and break it. I check my Facebook feed. Here’s where it gets tricky, ever fucking time. I read someone else’s good news about their work, and start to wonder what I’m doing. I start to mentally beat myself up. I sit down to study. No dice. I sew some masks and realize I have sewn the elastic in backwards. I throw the masks down in frustration and begin to study again. My mechanic calls and tells me my car is nearly dead, unless I want to spend a few grand on the exhaust system and manifold. I don’t know what a manifold is and I know my car is dying. What am I doing with my life? I prick my finger with the seam ripper and stew inside.
This is where the light bulb goes off. Well, it’s hardly a light bulb…more like an old-fashioned match in a very dark cave. “I’m having a flare up,” I think to myself. “I’m not thinking clearly!” Then I think about that for awhile. Is that true, or am I just being (insert a myriad of words here: lazy, stupid, stubborn, stressed-out)? Nope. Definitely a flare up.
The admission gives me an instant sense of relief. It’s not technically an admission, since I’m not admitting anything to myself. I’m recognizing that my brain isn’t working well at the moment. The next step is deciding what I have to do and what I don’t have to do in the near future. Naturally, since I’m not thinking clearly, I decide to write a blog instead of making more masks, studying for tonight’s Spanish class, or writing. My throat hurts a little. Maybe I have COVID-19. It’s not a stretch. Many of the symptoms are the same. I’ve spent a fair amount of time these last few months playing ‘is it Lyme or COVID?’ Nope. Not COVID.
My brain will not be able to stay on any topic for too long. I’m going to have to flit from task to task, accomplishing what I can and letting the rest go. This will mean some time will be spent discovering mistakes and missteps and having to correct them, like having to pick the seams out of three masks and resewing them. I’ll go ahead and publish this before I’ve checked to see if makes any sense. That way I can go back and read it later and wonder what the hell I was thinking.
I don’t know how long I’ve been this way this time. Katie has been house sitting or with her boyfriend. Maybe my friend Laura noticed something on Saturday. It doesn’t really matter, in some ways. In other ways, it does. I left the hose on for over an hour yesterday when I was filling the pond. What things would I overlook if I was alone? The fog will disappear at some point, and I’ll forget all about it until next time. Then I will go through the whole cycle once again, none the wiser, again. A perfect Lyme circle.