Tag: life

baby steps

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In the past 7 years I have made many attempts to get “back to life.” “Life” was defined as a regular job, keeping up the house, paying the bills, an active social life, and a return to health. Each effort lasted until a flare-up, and then I couldn’t juggle all of those things. After most attempts I felt worse than if I had never tried. This past year it was clear there would be no “back to life” as I knew it.

I decided to redefine what “life” meant to me. I had to look deep and let go of things that took too much of my energy and time, rather than exhaust myself keeping the thought of that other life alive. I’m sure that some friends looked on in concern as I sold my house, my car, and many of my things, bought a townhome to share with my daughter (I made the down payment, she carries the mortgage and we are both on the deed), and came down to Tucson to stay with my dad. “Crazy,” they probably thought, ” I could never do that.”  And maybe they couldn’t, or wouldn’t.

I’m going to do something I rarely do: give myself credit for knowing, deep in my bones, that this was precisely the right series of decisions for me. Like a snake molting its’ skin, or for me, more like a hermit crab scuttling from one snug home to another, I did all those things listed above . I made my  life move, whether I’m truly ready or not. Somehow, I knew what I needed was more space where I had time to think, and to do nothing but concentrate on my health and my self. It sounds like a huge gamble, but in reality it wasn’t. Once you’ve accepted the way things are going to be and what you can change the options are easy.

You’d be surprised how little possessions matter when the tradeoff is the freedom to grow. In fact, I feel lighter, less held down by a place or the responsibilities of caring for all that stuff. Do I miss some of those things? Of course I do, sometimes, but for the most part I don’t think of them at all.

So far, the results have paid off. I feel better than I have in over seven years. There were a few hiccups (the COVID vaccination and boosters sent my immune system into overdrive for weeks afterwards), and a few times when it seemed like nothing was going to change. Then one day I woke up and realized I hadn’t taken any medications, herbs, or sleep aids for Lyme in a week. Another day I had the energy to lift weights or swim 2000 yards. I was writing with a clarity I hadn’t had in so long I feared it was gone forever.

This is good news, right? Surprisingly, returning to health has required a great deal of work and energy.  A subject we don’t talk about much is the emotional burden of having a chronic disease. Lyme, in particular, is linked to  higher rates of depression and suicide, and lower quality of life., and PTSD  PTSD? I didn’t see that one coming,  but because I never know when or why I experience a flare-up, nor do I know how bad or how long a relapse will last, my body and mind stay on hyper-alert, always ready to fight. As you can imagine, this is an exhausting vigil.

I believe I had forgotten how to be healthy, how to have hopes and aspirations, and how to have a regular, steady rhythm to life.  I discovered that I had been protecting myself from the inevitable relapse, even in areas of my life like books, movies, and television, never watching anything too emotionally challenging unless I was “up for it.” Shedding all of the parts of my life that took up time and energy gave me room to just…be.

Living in a retirement community in Tucson with Dad is about as low-key as you can get. My dad’s house is a short walk from the pool and weight room. I walk Rocky around the neighborhood every morning, saying hello to the other walkers. I help Dad with whatever he needs, which isn’t much (usually a tech problem or something he doesn’t want to take care of), and the rest of my time is my own. Well, mostly my own. One of the secrets I’ve learned during my journey, is that I need to keep plugging away at writing and learning when I can, even if I forget it later or what I wrote was crap, because sooner or later, the writing becomes good and the information sticks.

I never stopped taking twice-weekly Spanish classes and kept on writing. I continue to make long-term plans for moving to another country, even when it seemed hopeless. This has been absolutely necessary to healing, because having the hope of a different fulfilling life (even if it might never actually happen) makes my life worthwhile. And so I make these baby steps forward as my mind and body come to terms with what I can’t change and what I can change.  I am slowly reclaiming my life, wresting what I can away from Lyme while still recognizing it will always be with me.

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crosswords

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I love crossword puzzles. My friend Kathy Fernandes got me hooked way back in 1978. Ever since then they have served as faithful touchstones in my daily life. The Daily Texan, the Houston Chronicle, Austin-American Statesman, Lubbock Avalanche-Journal, Winston-Salem Journal, Raleigh News and Observer,  the Rocky Mountain News and Denver Post, for years I worked the crossword in the paper we got wherever we lived.

I remember grabbing the Daily Texan as soon as I got on campus and sitting in the Student Union before classes. I remember working them in the evening the years before Katie. I remember working them while Katie napped on my lap. Later, she tells me that one of her earliest memories is “shhh, mommy’s working the crossword.” Since going online, it’s my early morning ritual with classical music and a cup of decaf (an early sign that I’m getting old, someday I’ll work the crossword with gruel dribbling down my hairy chin).

When paper newspapers became too expensive, I switched to working crosswords online. I subscribe to the NYTimes and Washington Post and work their daily crosswords. On weekdays both puzzles generally take me less than 15 minutes. Monday through Thursday, I race the clock, trying to get each one done in less than five minutes. I often don’t read most of the clues, just start filling in either across or down. Fridays are more difficult. Saturdays are the hardest, and sometimes, maybe once or twice a month, I look up clues online. Sunday puzzles have themes and tricks: rebuses, puns, quotes, tricks, or circles with additional clues and/or words.

One of the most important things crosswords do for me is give my days structure. The schedule changes, the habit does not. If I can’t work one, there is a sense that the day is not complete. When I was at my sickest, working the crossword became an accurate barometer of my neurological state on any given day. It still is, although the difference is much subtler, a matter of grasping for a word for a bit longer.

Lately I’ve added la crucigrama de El País. For those of you who don’t know, I’ve been learning Spanish. I am now at the intermediate level, a bumbling high school junior at the end of her second year of Spanish. Those early puzzles were terribly hard at the beginning. They are still hard. Armed with my dictionary, I painstakingly try to solve the clues. If I can’t get the whole word (hint for Spanish puzzlers, a lot of words start and end with “a” or “o”), I resort to clicking letters on the keyboard using the Wheel of Fortune strategy (a,e,i,o,u,r,s,t,d,p,l,m,m,b,c). Finally, in frustration I tap every other letter until I get the right one. As my Spanish has improved, so have my skills. It’s interesting to see that the creators use some of the same tricks in Spanish puzzles that English creators use, like the ones listed above. The El País puzzle creator has a fondness for clues that shorten the given word ( ¿Asombroso? muy poco.) They also have filler words, the ones that all puzzlers know because they have the right combinations of letters, like “oreo” in English puzzles. These take me around a half an hour after four months of hard work. I believe they are increasing my Spanish language skills, forcing me to learn context, grammar, and usage.

I love almost all word games, but many of them involve other people. The beauty of crosswords is that they can be a solitary habit at one’s convenience or a group effort. We used to have crosswords laying around on beach vacations, someone filling in some of the clues, someone else filling in others. I get texts from friends who crossword, asking about a clue or a theme.  I’m sure there is a much broader community that I could be a part of if I wanted to. However, I fall more into the solitary camp. It’s not a competition in that respect. It’s more of the quiet satisfaction of completion.

In Atul Gawande’s book “Being Mortal: Medicine and What Matters In the End“, he posits a theory that is eminently sensible to me. As people age and grow feeble, we should be asking them do what they do that makes life matter to them. It could be as simple as enjoying a bowl of ice cream while watching a ball game. When these things are no longer feasible, the person has most likely reached the point where they no longer wish to live. I’ve often wondered what my answer would be and haven’t come up with anything. After writing this blog, I realize it is my classical music/coffee/crossword ritual. When I can no longer enjoy it, I will have ceased to enjoy living.

Rather than being morbid, I find  knowing this baseline comfortable. As I grow older, where I live and how I live will change. The when and how may change (I may go back to pen and paper, perhaps, or start working them after my nap), but the ritual of settling in to solve a word puzzle will not. For what it’s worth, I see many more years spent happily puzzling, but, like a dog who stops wanting to take walks, the day I don’t feel like doing them anymore will be my signal that I am ready. Oh, today marks a change in music. From Thanksgiving until New Year’s, I listen to Christmas music. The ritual goes on.

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decompression

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I think I may be decompressing (or falling apart) after an incredibly busy and stressful summer. Now that I am healthy more than I am sick, I chose to cash in on my home and simplify my life. Sounds good, right? Well, I know moving. I have moved forty times in my life (this was my fortieth) and bought and sold seven houses. This was my eighth purchase, so I know the process. This was the most difficult move I have ever made, for several reasons. First, I radically downsized. Although I was more than ready to do so, it is a long, difficult process, even for someone who regularly goes through and gets rid of stuff, like me. Second, the market in Denver is absolutely off the hook. Selling a house is easy-peasy. Buying a house? Extremely difficult. Third, and the most challenging, this move represented moving on with life into the unknown.

Downsizing is an emotional journey whether you want to do it or not, especially after forty+ years of acquiring things. If I’ve done it right, I won’t miss anything that I let go. So far, so good. I do feel much lighter. The possessions were literal baggage; relics of a former life that is gone. What surprised me was how difficult getting rid of possessions are post-COVID. No one wants anything now. It took one estate sales, two donation pick-ups, and a listing for “free stuff” on NextDoor, and one junk pick-up to get rid of everything we wanted.

Buying a townhome was just as stressful as getting rid of things. We put bids on three properties before we found “the one.” After all the drama with selling and downsizing, once our bid was accepted, that part was surprisingly easy. They even moved up the move date by almost three weeks, a welcome event, because we were living in a stripped-down work site. Oh, did I mention I had to do a nearly $20k repair for the sale of the house? Well, I did, and that was a HUGE hassle. In the end, Katie and I purchased a townhome together. I’ll be there part-time, so it is definitely more “hers” than mine, despite the hefty down payment I made. She is extremely happy to have a mortgage and an asset. I’m extremely happy I don’t have to worry about a big house and yard when I am not there.  And yet, I am having trouble letting go of the fact that I am mistress of no home right now, but more of a guest, both in Dad’s house and now Katie’s. It’s a strange feeling, despite how generous they are. Neither mind letting me take over the kitchens while I’m there. I have my own spaces in both homes. And yet I struggle, even though it is what I wanted. 

The third point is the stickler right now. Wanting to be unencumbered and being unencumbered are two different states. Perhaps it is becauseI haven’t had enough time (really, since 2013) to work through all the major changes in my life. Divorce, graduate school, and Lyme, one after the other, in quick succession. Caveat: if you who think being sick is “downtime”, I know you’ve never been seriously ill for any length of time. As I’ve said before, being sick for long periods of time is a really shitty job. It’s hard, hard, work, and when you’re not sick, you’re frantically playing catch up. That was part of the reason I have voluntarily set myself adrift. The less I have on my plate means less catching up.

Without that ceaseless cycle to occupy me, I’m left to decompress. The first week back in Tucson was filled with getting Rocky and myself settled, and taking care of things around the house for Dad. The second week I got myself caught up with all the online minutiae of changing addresses, getting finances in order, and establishing a schedule. That only takes up so much time.

People, I’m here to tell you that decompressing and having the time to process huge life changes absolutely blows

Humans will do almost anything to avoid their own emotions of sorrow, rage, and regret and I am no exception. I don’t want to think about all the things I’ve dealt with. I find myself flitting from what I should be doing to mindless doom-scrolling and game-playing. At what point do I declare an end to decompressing and begin thriving again? I know what my therapist would say: there is no timeline for this journey. He would say I need to recognize that I have been through over six long years of being more sick than well. He would tell me I need to be kind to myself and relearn how to manage my energy and my life.

But for now, it means flitting from task to task, never quite able to fully concentrate on anything. It means struggling to give myself permission to do things just for me that aren’t related to getting better or surviving. I have to figure out where the line between self-indulgence and self-care is.

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identity

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All of this sifting through possessions and selling my home have gotten me thinking about my identity. Self-identity is a uniquely human trait, a sum of many things that defines who we are. I started off with an obscured identity, one attached to the circumstances of my birth and subsequent adoption. I had another name, another birth certificate. I firmly believe (along with most other adoptees) that this caused a fundamental scar that has, in many ways, defined my identity more than any other factor. In adoption literature, this has been called the “primal wound.” Very often it is one of the first things people learn about me.

Another event that has defined my identity was a fall from a tree when I was seven. I cannot hide that I am deaf in my left ear for long, nor do I try. It has impacted my life on a near daily basis for fifty-five years. One of the top  hearing specialists in the country(the son of one of my dad’s neighbors in Tucson) did an informal test one night after we had eaten dinner. He said that even if they could restore some ability to hear  in that ear, my brain had forgotten how to hear on that side. Isn’t that amazing, that the brain could forget something so fundamental? Three years ago, when I was fifty-nine, I got a tattoo of the mute symbol inked behind my left ear. This indelible mark is an announcement that my deafness is a permanent fixture of my identity .

I’m a straight, mostly white woman. I have a BA in Anthropology and an MFA in Creative Writing. I’m a mom of one and a daughter. I currently have Lyme disease. I like movies, books, cleaning, cooking, reading and swimming. These are all markers of my identity that I most often want people to know about me. I don’t identify as English or Hispanic or Catholic or Jewish or descended from (blank). Those labels hold no interest for me. My genetic background is too complicated for explanation, and I belong to the atheist tribe, a highly fragmented group.

It’s also not by accident that no possessions or places are on this list. Both of those things are complicated. I’m from a lot of places but not really. I was born in Texas  spent 39 years there.  I’ve lived in Louisiana, North Carolina, and now Colorado. I’ve always had possessions, and like many of you, have collected more and more of them as time goes on. I’ve gotten a lot of pleasure out of most of them (not cars, though. I am not interested in cars at all except as a means from point A to B). I can tell you when I bought this or that, and I take care of them. But what does where I am from and what I own say about me? I am a Texan by default. My relationship with Texas is complicated and I don’t consider myself to be a Texan. Many of my possessions were acquired during my 29-year marriage, a time that doesn’t please me to be reminded of anymore.

The truth is, neither of these things are that important to me. However, there is a slightly larger than small place inside of me that cares about my identity as defined by possessions and places. In America, besides what you do, where you are from and what you have managed to acquire are two of the most basic facts people use to show their self-identity and their ability to be firmly rooted in life. Most of us have proud pictures of ourselves or someone in our families in front of their houses. Sometimes the people are standing next to their new cars. People proclaim “I’m a New Yorker,” or “Atlanta born and raised,” as if this makes them a member of a tribe. To not have things, or belong somewhere, is to be pitied, as if you have not done what is expected. And so I doubt my intuition that tells me that now is my time to shed both and go forth into the world.

Another part of me, that nagging voice of insecurity, says that the time to reinvent has long passed me by.  That I’m too old, or that I should be content with what I have and where I am. My intuition says loudly and insistently to fuck that noise.

I hate the adage “age is nothing but a number.” It is misused, trotted out as a paragon to healthy living and/or a firm denial of the reality of aging. The reality is that we do age in spite of our best efforts. No one truly knows how long they are going to be able to do all of the things they’d like to do. At our last meeting, my dad’s financial advisor had to ask me “what the life expectancy is for people with chronic Lyme disease.” I don’t know, nor does anybody else seem to know. The CDC sticks with its’ assertion that even with “post-Lyme disease syndrome” one can expect to be fully well in less than a year. They are full of shit. But they’re not studying outcomes, either.

I want adventure before I’m forced to shrink my world due to the vagaries of aging. The truth is I can’t manage the energy to have it all anymore, especially with the ever-present specter of relapses. I’m not even sure I want it all. My hope is that this great purge clears the way for a larger life with less things and a clear sense of who I am.

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the future

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I’m at an age where I’m thinking hard about what I want out of the backend of my life. Moving has only heightened the scrutiny, and the process is not one that lends itself to definitive answers. For some people that isn’t the case. They will stay where they are, basking in post-retirement bliss in a home they’ve paid off with kids and grandkids (and some with great-grandkids!)all living nearby. That’s supposed to be the dream, right? Not for all of us.

Dreams have a way of changing, or at least mine have. There was a time in my life where that sounded pretty good to me. I think it changed when Katie was twelve or thirteen. I’m not sure why, other than I was unhappily married with a daughter who adamantly insisted she was never going to have kids. At the time, I thought it was all a phase. Still, the seeds of change had been planted. As the years went on, I got divorced. Katie never changed from not wanting kids. I went to graduate school for writing (a big change in and of itself) and I got Lyme disease.

All future thought was on hold at my sickest. For six years, I thought of nothing beyond surviving through another year. Now that I am definitely “stable” (meaning  a random pattern of wellness punctuated by relapses), I think about the future. What do I want to do with myself? I made a list:

  • Torture my dad with my presence for his remaining years (who am I kidding? Dad an Keith Richards will be here long after I’m gone. They’ll dance on my grave.).
  • Take care of myself. This includes having the time/energy to work out, cook, go to movies, have adventures with friends. It also includes lots of down time to relapse without feeling guilty.
  • Travel. I want the time and money to go see friends, to travel to Paris, or Palm Springs, or wherever to watch tennis, and to go and see the world. I may even spend time living in one of the places  part time.
  • Have a home base in Denver with Katie.
  • Write, write, write.

I suppose I’ll do all of this as long as I can and see where I end up. Ultimately, I’ll end up dead, of course, but that shouldn’t keep me from planning the future. If the present is any indication, I’ll be with Katie permanently at some point, subject to being “taken care of” by my daughter. As long as I don’t kick up too much of a fuss, I should be good there.

Some people might be shaking their heads at the things on my list, or the inclusion of Katie in my future. I’ve long given up on what people think of my relationship with Katie. I’ve pretty much given up on what people think of my choices in general. But the stuff with Katie goes waaaaay back. She established her “difficult child” bona fides by the age of three. I got plenty of advice over the years on how to deal with her, mostly from people who didn’t have a child like Katie. Don’t ask me how or why some of us end up with children who can’t or won’t conform to what an ideal child should be. A child who doesn’t care about pleasing you, or is simply different. Rather, ask me what to do about it, because unconventional children require unconventional answers. At her worst, I worried if she would want to live. At that point, making her to do dishes or go to school seemed pointless. My decision to let go of all those preconceived “shoulds” and “ought tos” ultimately proved to be right for us.

I still didn’t trust my intuition about other decisions, even though I knew deep in my bones that I was doing the right things with Katie.  We joke about our entwined futures, but neither of us envision future plans without each other in some form or fashion. For us, the immediate future holds a flip: I’ll be the one coming and going and making the home will fall on her shoulders. My gut tells me this is exactly what I need—what we both need—but I’m still settling into this decision.

Really, it wasn’t until Lyme that I have learned that I DO know what is right for me and sometimes those around me, often before I’ve weighed all the pros and cons. Interesting, isn’t it, that it took serious illness that completely shook me to my core to realize that.

Knowing intuitively what is best for me and actually doing it are different things. Nothing about planning a future is easy, even when you’re older. The process of stripping my life down to the essentials induces something akin to pure panic sometimes. Letting go of anchors like possessions and places may leave me feeling unmoored, adrift in a new sea that has tides and waves I’m not ready for. However, it is better than being anchored by those same things, firmly grounded where I don’t want to be, held down by them instead of freed. It’s time to let go and trust that I am more than things, and that Katie is perfectly capable and more than ready to create a home that also has a place for me, just as I have done for her.

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Even keel

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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.

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pot

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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.

 

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One of those days

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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.

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RomComs

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I can always tell when I’m feeling better. First sign is a manic frenzy to get my life “back on track”. I play catch-up and start to think about the future. That instantly brings on depression, anxiety and panic, so I try to balance it out by watching romcoms. I like romantic comedies. A LOT. The smarter and funnier the better, but I’ll settle for a cheesy Hallmark Channel movie, too.

I’ve yet to see one where the chronically ill hero finds the love of their life. That’s a plot that could go wrong in so many ways. Meeting another chronically ill partner? Oh, great, two sick people shlubbing along together, finding happiness in spite of barely living. Or one person “saves” the other, making life worth living. Yechhh. Or maybe the sick one keeps their illness a secret, but when it finally comes out, the healthy one finds they love the person no matter what. Right. That’s a totally true story, happens all the time.

The problem with all these scenarios is the chronic illness. Like a third wheel, it’s there, along for the ride whether you want it or not. I don’t know what the dynamics are for stable couples when one finds out they have a chronic illness. I’m sure it’s the same as everything else: some partners bail, others rise to the occasion, but most probably grope along blindly, trying to figure out what to do as problems arise. I don’t have that right now. I have Katie and Dad, of course, but they are family, so far from a romantic partner that it’s no comparison.

Well-meaning people in my life worry that I’m not happy being single. Well, I’m not always happy, but that doesn’t have anything to do with not having a relationship. Maybe they can’t imagine being alone in their own lives, so they project their own fears of being alone onto single people, . In many ways, most ways, in fact, I’m much happier alone. For some people this is simply impossible to understand, especially people who know that I love men and flirting. It’s true, though. How much of this is due to Lyme and how much is due to personal evolution is difficult to discern.

Romcoms often bring up lots of emotions for me after the ‘high’ from the always happy ending, most of them cynical. I mean, at the heart of every romcom, regardless of how the writers frame the story, lies the fantasy that there is true love for everyone. That’s not true, it’s never been true. Is it a modern promise that can’t help but make most of us disappointed? Or is the modern standard so high that romcoms have to exist to keep the fantasy alive? Or maybe they exist in the same territory that fairy tales and romance novels; they satisfy our yearnings to be loved.

That’s the thing people pity single people for, isn’t it? “I just want you to be happy” is code for “I want someone to love you”.  “I don’t want you to be alone” really means “I want someone to want to be with you”. It doesn’t matter how fulfilled your life is in every other area, the message is  loud and clear: you can’t be satisfied until you have that person. In the most primitive terms, it’s biology at work, making sure we procreate and continue having little humans to populate the earth. I’m certainly long past that stage. I’m in the stage where I’m supposed to be enjoying my grandkids (I’m not sure I care about that, either. Katie has never wanted kids), and romantic love is a comforting memory or a real stroke of luck.

I think I like romcoms because they always have happy endings. They often start with one or both protagonists going through the worst time of their lives, followed by the soul-cleansing moral journey of discovering what is important in life, and finishing with the satisfying message that if you make the right choices and get your karma straight, you’ll be rewarded with true love. Just writing it down makes me realize how ridiculous the whole premise is. And yet I still come back for more.

The pay-off is catharsis, a feel good moment that cost me nothing. Since my Lyme disease isn’t going anywhere soon, I need an escape that doesn’t involve alcohol, physical exertion, money, brain power, or too much effort. I tend to go through phases of feeling like I want someone, but not so badly that I’m willing to, as they say in romcom vernacular, “put myself out there”. In truth, I don’t have the time or energy to put into anybody else but myself and I am a-ok with that.

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Stalled

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I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’.  After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.

It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.

It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.

After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.

Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.

For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.

However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff.  It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?

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