baby steps

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

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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toil

It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.

We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.

Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.

I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!

I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.

I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.

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