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.
July 4th is tomorrow. I asked Dad if he wanted to do anything and he gave me the look that said not only “no,” but “HELL no.” I am okay with that. In fact, since Lyme, I don’t celebrate most holidays very much, certainly not like I used to. My theory is we celebrate most holidays for the kids or, if there are no kids, for ourselves.
Chronic illness can put the kibosh on any holiday; the pressure to “have a good time” or “can’t you have (insert whatever food or drink I can’t have here) it just this once?” often caused unwanted relapses because I did too much. Fortunately for me, Katie and Dad are easy. Most of my friends have worked to accommodate my needs without making a big fuss, so I can celebrate holidays with them when I feel up to it.
That’s what happened in November 2015, when I was really sick. Katie worked at a kennel and volunteered to work holidays because she knew I was too sick to care. I had enough energy to cook the Saturday after, but on the day itself, Katie was at work and I was huddled on the sofa, so sick I could barely watch the Macy’s Thanksgiving Day Parade (while looking up the proper name for this, I see that this year my birthday falls on Thanksgiving Day, so now you all have something to truly be thankful for). The sky didn’t fall, and the turkey, dressing, mashed potatoes, broccoli and gravy tasted just as good. We had an epiphany that day: holidays can be any day you want them to be.
So now I pick and choose, doing what I have the energy to do and celebrating holidays that make me happy. Katie pointed out that I always put up Christmas decorations, even when I am at my sickest. For those of you who know me, this might seem funny, given that I have been an atheist forever, yet I am an enthusiastic secular celebrator. I happily put up decorations and lights and blast Christmas music between Thanksgiving and New Year’s Day, and I do it whether there is anybody else present to celebrate or not, because I like it. On a cold, dark afternoon, the lights and decorations cheer me up, and more great music has been written in the name of Christmas than any other event. I don’t have to be Christian to enjoy Handel’s “Hallelujah Chorus.”
That first year I managed to get decorations up at some point after Thanksgiving, I can’t remember when. We didn’t open presents until Christmas Day afternoon, or maybe the day after. I watched sappy Hallmark movies and cried a lot, not because I was sad about MY Christmas, but because I was deep in the throes of neuroborreliosis, and crying was only one of the uncontrollable emotions I had then.
After that, celebrating a holiday when it was convenient for us or ignoring it altogether became easier and easier, until not celebrating was the norm. I let holidays choose the time. It seems logical, since nearly every day is a work day when you have a chronic illness. This past year, I’m not embarrassed to say I had no idea it was Easter Sunday until two days after.
I think holidays are important, if only for the brief respites they provide during the year. I also think they are just random days, except for the solstices, astronomical event that occur whether we notice or not.
Our society has made celebrating holidays almost fetishistic, a demonstration of one’s patriotism, or faith, or devotion to dressing up, or cooking massive amounts of food. We have wreaths and signs and lights and candy and presents and fireworks and flags and tchotchkes galore. Popular culture makes me feel I must be a sad, pathetic person, or worse, a bad mom/daughter to not care about and mark each and every holiday.
I talked to Katie about it, suddenly anxious that I hadn’t done enough in the last 8 years. She doesn’t care, a sure sign she is my daughter. She also has happy memories of every holiday and can recite the foods, decorations, and celebrations that we shared. As an interesting side note, we talked about how holidays can shift in importance over a lifetime. When she was very little, it was all Christmas, birthday, and Halloween. Then July 4th and Thanksgiving started to take on a new importance. By the time she was out of high school, Halloween had dropped off her radar and Thanksgiving had become her favorite (except her birthday has stayed #1 forever, in her mind, she has a birthday month). Thanksgiving is my favorite, too, because it is simply a day to enjoy family, reflect on what is good in life, and eat.
My point is, don’t assume that because I forget holidays or choose to celebrate them in my own way that I am unhappy about it. This year for fourth of July I’ll be cooking ribs, and making potato salad and coleslaw at some point. Dad won’t touch the potato salad (he doesn’t like mayonnaise! Is there anything more unAmerican?) but he’ll enjoy the ribs and a dab of slaw. Then nothing until Labor Day, the holiday that is supposed to honor America’s workers that morphed into the holy days of sales. Now it is simply a day off after a long stretch of the dog days of summer, and there is absolutely nothing wrong in celebrating that.
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.
Anybody who has known me for any length of time knows that I am the world’s worst at dates and times. This is a neural defect I can’t blame on Lyme. It’s also not ADHD, nor is it carelessness. I could blame it on falling out of a tree at the age of seven. My head cracked like an egg on the cement driveway below and I was in a coma. I am deaf in my left ear from that fall, and I like to believe that the very tiny area of the brain that processes dates and times was also damaged. Otherwise, my inability to remember dates and times is just pathetic.
My issues with this go waaaaaaaay back, and have been a family joke since I can remember. Mom often said I would be late for my own funeral. I have a tendency to forget about the month of February. Don’t ever ask me what the day and date is. Although I have a great memory for details about people and things that happened, like how one cold spring night in high school I was drinking Jack and Coke with friends (I could name them, but you know…) lying on the hood of a car parked in an undeveloped cul-de-sac listening to Peter Frampton’s “Do You Feel” for the first time, but I can’t tell you off the top of my head for certain which year Katie graduated from high school (it was 2004 or 2005, so I do have it narrowed down.) It was a source of irritation to my ex that I could never quite remember our anniversary, probably because it was in February.
I don’t do this on purpose, or for attention. Yes, I have employed many of the methods I’m sure you could suggest for me. I’ve had calendars, alarms, reminders, and sticky notes. I’ve worn rubber bands that snapped at my wrist. The problem is that I can look at the calendar and see events, birthdays, and appointments, and ten minutes later it is all gone from my brain, like it never was.
This gives my life an element of mystery, for sure. My bewilderment is genuine, and my surprise at missing something is never feigned. I’ve long since given up being embarrassed about it.
Sometimes I’d love to see an MRI of my brain while questioned about dates and times. I’m fairly certain there would be very little activity. At least I hope that is what it would show, because it’s not like I want to be this way. For me, it truly is a form of brain damage, the area of time and dates a blank canvas sparsely spattered with random dates that I do remember.
There are many stories about my inability to get dates straight. I can remember a few, especially the epic ones. The most epic, the one I hate to tell, is the time I managed to score Prince tickets when he came to Denver for two nights. The tickets were something like twentieth row seats and cost over $600, because we invited another couple to go with us. I’m guessing a lot of you can see where this story is going. We headed down to the Pepsi Center the second night, because I was sure that was the night. It wasn’t. Honestly, I was surprised they took it so well. Also surprised I didn’t get divorced over that (although it does show the level of disfunction in our relationship that I didn’t forward any info to my ex. It was a control thing between us that grew worse and worse).
There was the time I missed a mini-reunion with high school friends because I got the night wrong. I think I even argued with them that I was right. I don’t do that any more, thank goodness. No, I accept this brain fluke and try to make sure it doesn’t happen too often. I’ve also learned to ask my friends for reminders, and I always check to see if businesses send reminder texts for appointments.
Technology has become my best friend for this problem. I’m going on vacation with my friend Laura in March. Fortunately for me, Orbitz and Airbnb update my calendar for me, reducing the risk of entering the wrong dates. Yes, I do that quite often. Another quirk of my date deficiency is that a day or date that is wrong will get stuck in my brain and won’t move, like a popcorn kernel wedged between two back molars. That’s something that really drives Katie crazy. “No, mom, I already told you four times, it’s next Saturday, not this Saturday!” But Laura , bless her, reminded me to send her all the reservations and dates so she can double-check to see if I’ve screwed up and enter them on her own calendar.
Sometimes I don’t know why friends put up with this nonsense. Maybe if you are aware of it you simply accept it as a quirk and adjust accordingly, like Laura, or get annoyed and needle me, like Katie. I’m grateful the people in my life have accepted this foible of mine and I’ll gladly accept nagging, teasing, and constant reminders if it means I won’t forget.
There must be other stories, just like there are other stories about my deaf ear. If you remember any, I’d love to hear them. I’ll probably remember the memory, but not the date and time. And please, if I ever make plans with you, put it on your calendar and shoot me a couple of texts.
I got my booster shot yesterday. I’d forgotten how much each vaccine stirs up my immune system. It’s not major, not in the context of Lyme, but it is just one more insult to my body. Sometimes I get sick of always monitoring my health. Not in the “I take vitamins, exercise, eat right, and get a good night’s sleep” way, but a daily assessment of what is going on with my body. There are the decisions on which supplements to take to keep me on an even keel. More decisions on which herbs to have for the co-infections to keep them in check. I often have to figure out what else is going on, too. Is my digestive system crap today or am I good? How is that stupid chronic cough that is directly tied to my gut going? Is my liver going to protest from endotoxin overload today? It’s exhausting, especially when compounded by the threat COVID and reactions to vaccines.
I am not against vaccines. On the contrary, with my immune system, I require them. I just wish they weren’t one more thing to upset the delicate balancing act of staying well and stable. This is the norm for most chronic Lyme patients, always putting out fires just to have new ones pop up. I’m trying to think of another disease that matches the sheer scope of systemic problems. I had to look up the systems of the body and there are ten: skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary, and the reproductive system. On any given day, I can have problems with four or more of these systems. Not huge, life-threatening problems ( I don’t think!), these are erratic, maddening shocks that mentally and physically wear me down.
But getting COVID could be very serious for me, so I take the vaccines and try and figure out how they affect my body and then I try to regain my balance.
That brings me to another balancing act: the CDC’s handling of COVID. They have managed to infuriate nearly everyone with their ever-changing guidelines and recommendations.
I’ve been mad at the CDC for over six years now. The CDC has let me down at nearly every level during my illness. They have suppressed research that could help me and thousands of other Lyme sufferers. They deny the existence of chronic Lyme and actively go after physicians who will treat chronic Lyme. They have knowingly undercounted cases of Lyme disease. In the past several years, they have grudgingly admitted that they undercounted and are slowwwwwly starting to recognize and collect data on chronic Lyme cases.
This puts me in a quandary when it comes to COVID. It is difficult to put total trust into an institution that has so clearly failed me. I have to remind myself that COVID is different. There are many, many scientists and pharmaceutical companies working with the CDC to figure out vaccines, tests, and public policy. But there are just as many who aren’t, and there are politicians using COVID for political points, not for the public good.
I have to remind myself that the CDC is a big, sprawling entity with around 15,000 employees whose main goal is public health and safety. Lyme disease is one tiny part. Yet there are troubling signs that indicate the CDC has become more and more compromised by politics, pharmaceutical companies, insurance companies, and rifts in the medical community itself.
In the age of COVID, this influence is particularly noticeable. During TFG’s tenure, the CDC had to tailor their statements and recommendations to align with the administration’s views. Now we have a less hamstrung agency that nonetheless continues to get the tone wrong. We all get it: this is a new disease with very little data to go on. We don’t know who is vulnerable or how to successfully test and vaccine everyone. Protocols and recommendations change with both new strains and new data that informs new guidelines.
All of that leaves most of us exhausted, grumpy, and unsure what to do. They are trying to balance public policy to keep businesses and schools open while protecting us. But who is their real master? Their recommendations are being subverted at state and local levels, often kowtowing to political pressure rather than public good.
Lyme disease faces similar challenges. Physicians in some states have been criminally charged for treating chronic Lyme patients. There is a constantly changing narrative on what it is and how to treat it. I know I get extremely angry at the lack of a consensus about diagnosis, treatment, and outcome. At the same time, I am denied insurance, disability, and treatments because they have been deemed by the CDC as not real.
This leaves Lyme patients distrustful of their advice and ripe for scams and unproven, sometimes dangerous “cures.” I realize this dilemma aligns with certain arguments posited about COVID, and therein lies the danger of the insidious pattern of science denial. If we had research funds going into Lyme for the past thirty years and the CDC kept us updated with their best recommendations, maybe I wouldn’t have this distrust. If powers behind the CDC allowed the agency to operate on the basis of protecting public health above profits, egos, and politics perhaps we’d be in a better place with COVID.
In many ways, I feel their balancing act is much more difficult than mine, because ultimately, I have placed myself outside the system and I am the one in charge of my health decisions. I try to base those decisions on facts and scientific evidence, but often times there are none, not because Lyme is a new disease, but because there is a willful, systematic denial of the existence of the disease. Huh. Perhaps our efforts are more alike than I thought.
My social life has changed radically in the past seven years, and it’s hard to distinguish how much is due to Lyme, and how much is due to COVID. Now I’m trying to figure out why I like the quieter life so damn much.
“There is a difference between solitude and loneliness.”
This is profoundly important to recognize. I am not lonely, nor am I pining away for FOMO (for those of you who’ve lived under a rock for too long, FOMO is “fear of missing out,” something most of outgrow sometime between middle school and the twenties). If I wanted to see people and be more social, I would. But (she says in her best pouty voice) I don’t wanna.
Therefore, I’ve been giving a lot of thought to what this means to me. I was stumped. I am not someone who shies away from people. Some might call me an extrovert, but I’m an extroverted introvert, i.e., someone who can be outgoing and enjoy chit-chat, but absolutely need to be alone to recharge. It’s quite a fascinating subject to read about, and there are some fine books written on introversion. Which brings me to the obstacle I kept coming back to:
“Solitude is fine but you need someone to tell that solitude is fine.”
Our society is adamantly focused on extroversion. Whether it’s a commercial showing shiny happy people getting together or a Hallmark movie highlighting the exhausting search for family and love, we are rarely shown people who are alone and content. This was getting under my skin and causing me to judge myself; to deem my desire to be alone as a negative, rather than a positive.
So of course I asked my therapist about this conundrum. He asked me how I felt when I was alone. It brings me back to the comfort and safety of childhood, those nights when I curled up wherever there was privacy in our home and read. I remember staying up late in our study, watching the little tv dad had in there for watching golf and tennis, and discovering the joy of watching a good movie (I vividly recall in particular Oklahoma and On the Town.)
I answered my own question and there was my “permission.” If solitude was what I wanted, then I should have it.
“If you’re lonely when you’re alone, you’re in bad company.”
I have never loved my own company more than now. It’s a preference to be alone at this time. My craving solitude is more than a reallocation of my energy (still a necessary component of having Lyme). It’s more than a safety precaution in COVID times. I’ve always been this way.
“The greatest thing in the world is to know how to belong to oneself.”
Note that I say “at this time.” I don’t know if I’ll always prefer the level of solitude I have now. But for the present, I not only prefer it, I demand it. I’m certain this all has to do with healing from the past decade.
A lot has happened between 2010 and now. Mom died. My marriage went downhill. My ex took a buyout and left his job. Katie came back home (that was a good thing, but still stressful). We decided to divorce. That’s when life went into overdrive.
Between December 10, the day we decided to divorce, and January 17, the day I went to Bennington, I packed the house and got it ready to sell, and found another house. I was still negotiating the contract on the bus from the Albany airport and Bennington. I moved four weeks after starting grad school. There was much solitude during those two years, but not the kind that recharges, as anyone who has gone to grad school can attest.
And then came the Lyme years, where solitude was a given, not a choice. Being sick is a special kind of solitude, and it required all of my energy.
“I enjoy convalescence. It is the part that makes the illness worth while.”
Now that I am in remission for long stretches I have time to process this long stretch of change and begin to heal. Healing is a very subjunctive thing, much like grief, pain, sickness, and love. My process for healing is to immerse myself into things I want to do, including napping, walking, reading, cooking, swimming, cleaning, writing, studying, and yes, solitude.
There’s nothing inherently wrong with this, but I’ve grown positively crotchety about guarding my time zealously. I am enjoying the peaceful feeling of the freedom to do what nourishes you after a long illness.
“Loneliness is the poverty of self; solitude is richness of self.”
This is the truth. I can’t be the only person I know who prefers solitude. I find my newfound solitude to be the the rewards of major lifestyle changes. I wanted this. I downsized my world to get this time, so my job is to honor what I have created.
I hate it when people don’t believe what I say. When I say something I don’t fuck around with double meanings or hidden codes. Sometimes I do tell people what they’d like to hear, especially about my health (sure,I feel good right now) or how they look or feel. This rant pertains to other things. If I say something doesn’t bother me, IT DOESN’T BOTHER ME. Trust me, you’ll know if it does.
The more puzzling question is why people distrust what I say in the first place. There might be some form of communication they learned at an early age that I didn’t get. At any rate, it drives me crazy, both with Lyme and with life. It’s also exhausting to feel that I have to re-explain once again, that yes, this is how I feel.
This spills over into holidays, mainly because of our obsessive mania that everybody “have a good holiday” as if there is a one-size-fits-all formula for that. All holidays are loaded with baggage, but for most of us, none more than Christmas. Over the years, I’ve dropped off celebrating most other holidays. Easter? I’m atheist, so that one was easy to let go. July fourth? Other than deviled eggs, not much I miss one way or the other.. If we had children around, things might be different, but that’s a whole other blog topic. Katie’s theory is that if you don’t have happy Christmas memories during your childhood and teens, you spend the rest of your life chasing the dream. She may be onto something here.
When I was little, holidays were celebrated, but not excessively so. I could always count on getting a few things that I really wanted. We had cookies, and a Christmas dinner, but nothing over the top. I remember feeling happy and loved. As the person in charge of holidays while Katie was growing up, I tried to to the same. I must have done that well, because Katie has mostly happy memories about Christmas, and for that matter, all holidays.
Because I was the one in charge of holidays, I got to do what I wanted. That may be the key to having good ones. I took great pleasure in cleaning the house and setting up the decorations. Aside from arguments about lights and the excruciating process of watching the ex pick out a tree (we solved that one by going artificial), I was free to pick and choose the rituals I enjoyed (midnight mass? No thanks. Waiting until after breakfast to open presents? Nope.) I continued lots of traditions long past their childhood origins and my divorce simply because I liked them. Katie enjoyed the fruits of my labor, but part of that was I didn’t make her do them.
The onset of Lyme brought about the biggest changes in my celebrations since my twenties, when I moved out and set up my own household. Fortunately for me, those years dovetailed with years that Katie worked every holiday. Kennels never shut down. Dogs need to be fed, medicines given, and kennels cleaned. Katie volunteered to work those days and we adjusted to my being ill and her working holidays. The first year after I was diagnosed, I spent Thanksgiving in my pajamas and robe, too sick to go anywhere, cook, or even care. I made Thanksgiving dinner a week after Thanksgiving, and it tasted exactly the same as if I had made it on Thanksgiving Day.
That year, we had Christmas two days before. I managed to get up the Christmas tree and wreath, but it certainly wasn’t a typical Christmas. Once again, the presents brought as much joy as if we had opened them Christmas mornings. Not having up all the decorations didn’t diminish the joy of seeing the Christmas tree lights and the wreath on the door through the season. It was a revelation. After that, we just rolled with it. A few years there were very few presents, just because it was too much for me to shop and wrap,. Instead of being sad or depressed, I found I liked the freedom. To be able to watch movies in my jammies and not worry about pleasing anyone but me was exactly what I needed when I was so sick.
Now I can enjoy Christmas however it turns out. I am very fortunate to have a family that wholeheartedly endorses this. Dad doesn’t care for any holidays, including his birthday. He suffers through them to make the people around him happy. There is a place for this, just as there is a place for respecting his wishes. If someone close to me really loved celebrating July Fourth, I’d make potato salad, deviled eggs, and ham and enjoy doing so. I’d go see fireworks and get a thrill out of seeing them. On Halloween, I’d happily decorate the porch and hand out candy. I wouldn’t go to church for Easter or any holiday, but you get my drift.
Since Lyme, I’ve come to embrace my non-holidays. I feel positively smug when I hear how exhausted people are from endless rounds of shopping, parties, and family obligations. If you love doing everything and everybody’s happy in your world around the holidays, good on you. Enjoy them and recognize that there are lots of people who are perfectly happy NOT doing all those things. Katie, Dad and I give each other things all year long. We go out to eat when we feel like it, and I’ll cook a nice dinner whenever I want to. And please, when someone (ME!) tells you something doesn’t bother them, try to believe them.
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.
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.
My brother Michael died of a heart attack Sunday, August 29th in Lafayette, Louisiana while Ida banged through the state. He was sixty-six years old. His death was not a surprise, he had been in poor health for the last five years or so. The surprise for me was the depth of my mourning. We had not been close for some forty-five years until he quit drinking over ten years ago.
One of the things I’ve learned the past five or six years is that no one knows what demons other people are battling, why they turn to destructive things to deal with pain. Because that is what almost everyone who drinks, or does drugs, or even smokes are doing. My brothers were handed a raw deal from the start of their lives, long before they had words to protest what fate handed them. They were the last two of five children born to a young couple in the wasteland of post-WWII Germany. The mother abandoned the family soon after Michael’s birth in 1955. The children were removed and placed in an orphanage. My parents adopted them in the summer of 1958 through the Mission Methodist Home in San Antonio, TX.
They now have a name for what my brothers experienced before they were adopted: attachment disorder. Essentially it means that a person’s earliest experiences were lacking in love and nurturing. In turn, as they grow older, they have social issues, trouble bonding with people, and trust issues. One can only imagine the unarticulated pain and anger this causes. The amount of damage in my brothers went by age. Mark, my oldest brother, was profoundly scarred, Michael less so.
Michael was a sweet child, and made friends easily. When he entered his teens, he discovered alcohol. I think alcohol numbed him to the pain he held inside. After he graduated from St. Stanislaus HS (a private school in Biloxi my parents hoped would help him), he joined the army. After that, he was AWOL for years. And so my relationship with him was AWOL, too. He called my parents when he needed help, or when he was feeling sentimental about a family that had gone on without him. Alcohol derailed much of his life, causing all the rifts and problems and health issues you would expect.
And yet, he survived. He worked as a roughneck and married a native Louisiana woman from a large Cajun family. He called occasionally to tell me he loved me and to see how I was doing. I was angry with him for a long time. Oh, I had what I thought were good reasons, but in reality, I can see that they were flimsy, based on my own insecurities and pettiness.
He was an active alcoholic until 2007 or 2008, when a doctor at the VA told him he was one drink away from dying. As far as I know, he never took another drink after that. That’s when he started to call me more often, after over thirty years of absence from my life.
At first it was rough going with Michael. I let my anger and resentment get in the way. Then I decided that I was through being defensive and made a point to always say something positive to Michael, something he had done right. That wasn’t hard. He had quit drinking. He cared for his ill wife for years. He loved his step-grandkids.
Something wonderful happened over the last two years. Michael started getting therapy from the VA. He reached out over and over, showing a vulnerability and willingness to grow. He quit smoking cigarettes when another VA doctor told him he could unclog his veins in his heart and legs, but if he didn’t quit smoking he would die.
In the end, Michael couldn’t outrun his bad habits and genetic predisposition to heart disease (Mark died of a heart attack, too). What sucks is that I was just getting to know him. I think he was just getting to know himself, and to look forward, not backward. He was going to take courses at the community college through an outreach program provided by the VA. He’d faced his demons and he was winning. There was so much good to him when I looked, and an inner strength that I’m not sure he knew he had.
Michael was able to open up to our dad. He asked if he loved him and if he had made him proud. Dad answered yes, that in the past two years he had seen how hard Michael had worked and how many obstacles Michael had overcome. Dad has always felt that he missed the mark when it came to recognizing what Michael’s needs were, and he told him so.
The last time I talked to Michael was Saturday morning. He was nervous about starting school and learning to use a computer. He was thankful that he had the courage to talk to Dad and felt they were close, perhaps for the first time in his adult life. I told him I felt I had a brother again.
It’s going to take me some time to work through this. There were many times I could have done more. Meanwhile, I remember that he introduced me to black music: soul, funk, and blues. He was a rock-solid Cajun cook and made a great jambalaya. He loved working on cars. He loved to fish and sit with friends and shoot the breeze. He always told me he loved me. There were times when I parroted the words back, but lately I meant them.
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.