time warp

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.

 

 

Share

balancing act

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.

Share

holidays and opinions

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.

 

 

 

 

Share

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.

Share

decompression

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.

Share

identity

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.

Share

moving

I can always tell when I’m fighting an infection now. Babesia, a malaria-like protozoan parasite co-infection that hasn’t been in the picture for over two years (maybe more, I can’t keep all this shit straight) has returned. It’s probably due to an overload of stress and activity. I’m selling my house and down-sizing. I made the decision, traveled to Denver, prepared the house, and sold it all in three weeks. Fortunately, I have plenty of experience in this area. I’ve moved 39 times (give or take a few hasty moves in my college years) both as a child and as an adult. When I was married, I was the one who did all the legwork to prepare the house for selling and moving. As a child, I watched my mom do the same thing. She was highly organized and I don’t recall any trauma from a poorly thought out move. So I scrubbed, cleaned, packed some things up, and made the house look like someone would like to live there.

Houses are selling in less than a weekend in Denver at considerably more than the asking price. I don’t know when I’ll ever see a stronger seller’s market for houses in my price category again. It was no surprise when we had an offer Monday morning after the first weekend.

All that activity wore me down and that’s what babesia was waiting for.  This is part of the reason I’m downsizing in the first place. The more stress I can eliminate from my life the more I can control relapses (I hope!). There was no sneaking up with this infection. It barreled in back in early June and it is raging right now, in spite of being on medication. And babesia has a unique set of symptoms: my eyes ache, itch, water, and blur, my teeth hurt deep in my jaws, I have a sharp headache constantly, I break out in sweats, my muscles ache, and my brain gets anxious and angry. I know, you’re thinking it sounds a lot like my other co-infection symptoms, and you’d be right. It’s the nature of the symptoms that is different. I could write pages on the differences, but I’d bore both myself and you. Let’s just say you know it when you feel it.

At any rate, the end result is a body in combat. I sleep a LOT, like ten or more hours a day. This Sunday I couldn’t stay up for the entire Wimbledon Men’s Championship match. Bear in mind, this was 10:30 am. I’d been up for four hours. In my defense, I detest Novak Djokovic, so not seeing him play isn’t exactly a hardship. It’s just frustrating to bow down to my body’s needs instead of doing what I want. I slept until a little after twelve and when I woke up, Djokovic had won. Yuck. I don’t like him. I find his whiny arrogance combined with his neediness that tennis fans adore him off-putting. I didn’t had the energy to do much else. It is one of the truths of chronic Lyme that it takes a tremendous amount of energy to fight off active infections, especially a parasitic one that feasts on red blood cells, like babesia. 

The other sign my body is working overtime is my appetite. I am constantly hungry. Not junk food kind of hunger, but a deep urge to eat nourishing foods. I crave fruit, protein, vegetables, and fats. I give in to the cravings because I think my body knows what it needs when it’s laboring like this. Today it was leftover grits and fried catfish with some eggs on top for breakfast. Lunch was a big salad and sardines (go ahead haters, sardines are delish). I had popcorn for a snack and dinner was a baked sweet potato and steak. I’m still hungry. But I’m full. It’s annoying. What isn’t annoying is that I don’t gain a pound while this is happening.

So, I’m sleeping and eating or thinking about both most of the time right now. It’s a strange activity, fighting infections. I don’t necessarily feel ‘sick’. I feel like a bear must feel at the onset of hibernation. Grumpy and eating and eating for the long winter and becoming increasingly sleepy. If I don’t have anything else to do it’s not bad. I basically plan meals, cook, and lounge around waiting for sleep to overtake me. But I don’t get too much else done. I can only hope that allowing my body the rest and nourishment that it needs will get me back on track soon, because I have a lot to do in the next few month. I have to find another place to live, pack, and get rid of a bunch of stuff. I have to line up movers and a service to sell all the things we don’t want. I’ll have to sign a bazillion pieces of paper in order to sell and buy a place. I can’t say the process will be enjoyable. I can say moving is one of my life skills that has proven to be incredibly handy. I’ll do what I always do: forge ahead and remind myself daily that when it is over, I’ll be in a better place, physically, mentally, and financially.

Share

talking to myself

I’m in the “I need to give myself a good talking to” phase of recovering from this latest relapse. It’s the stage where I’m returning to normal and I always do that better physically than mentally. Unless you have experienced unpredictable lapses in your health, understanding the amount of mental strength it takes to get your head straight once again is hard to fathom. It’s real though, and to deny your brain the time to heal, too, is just plain silly.

That doesn’t alleviate the frustration of reclaiming your brain. The mental effects of Lyme are perhaps the slipperiest symptom of all. Quantifying mental distresses like anxiety, depression, OCD, and depersonalization can be tricky, especially if they are directly tied into an unpredictable, yet reliable pattern of illness, like Lyme. I’m not sure medication would help me, for I function quite well (translation: I hole up and hide from the world) even when my brain has walked off the job for a while. At any rate, I’m weepy and angry and sad and anxious and scattered and blank when I’m sick and then I get better. It’s that in-between phase that I inhabit right now, the sputtering back to life of the ol’ bean.

The first thing to come back is the need to ‘put things back in order’. I think I’m doing great and keeping up with everything and then I discover all sorts of stupid shit that I’ve done. Once that’s sorted out, I have to see what emails/business/friends I’ve neglected or forgotten and reach out. Then I must clean and reorganize. This time it was my closet, moving around my “winter” clothes for my “summer” clothes (quotes intended, because in Tucson, they’re the same!). So. My life is back in order and it’s time to start thinking and writing again. I’ve tried to write while relapsing, and I can assure you that it is an exercise in foolishness, the writing wooden and the thoughts going nowhere. I still do it, if for nothing else but the entertainment of reading it later.

There are a few things I’ve discovered about my process, the main one is every single fucking time I think my brain is not going to come back. I grow impatient and start scolding myself. Thus the “give myself a good talking to” phase. It that an old-fashioned phrase? I’m sure I heard my mother say it and read it in books. I started using it once I left home, and had no one to do it for me. The voice is usually my mother’s, her pragmatic, tough view of getting on with it has served me well over the years. Not with Lyme, though, because the act of getting on with it is more complicated than buckling down and working harder. My brain is still warped while I’m doing said talking to and attempting to buckle down. Like old furniture, my brain takes time to warp, and more time to repair, the wood coaxed back to its former shape with pressure, clamps and glue. There is no rushing the process. Telling myself to get going again is my version of clamps and glue, applied liberally to quite literally straighten myself out.

Sometimes I wish there was a way to see what is happening inside my brain matter during relapse, recovery and  periods of wellness. I imagine my brain swollen during relapses, the neural pathways squeezed so tightly they only partially function, and when they do, they misfire. During recovery, I see the pathways opening randomly at different rates, struggling to reestablish the known and familiar. It’s the wellness phase that I’m most curious about. Have some of those pathways been squeezed too hard by inflammation and been destroyed forever? On the other hand, I try not to think about this too deeply, because I’m not comfortable with the idea that every relapse invites a bit of destruction to what makes me myself.

I have a lot of freaky thoughts while my brain reawakens. I’m sure this is completely expected and considered normal by neurologists who study brain traumas, but man, is it weird. The good thing is that they are fleeting and not so weird that I worry about becoming permanently mentally ill. In fact, there is something exhilarating in knowing that all these strange manifestations are caused by an identifiable source. Katie likes to remind me of this frequently when I tell her I’m not thinking clearly.

“I’m not thinking right now and I can’t figure out why,” I say.

“Yes you do,” she says. “It’s your stupid fucking Lyme.”

Katie is the angel/devil on each shoulder and I am lucky to have such an uncensored voice. She doesn’t scold or sugar coat. She tells it like it is to me, as she has done her whole life, whether I want to hear it or like what I’m hearing. She also tells me to relax, I say this every time and every time I get better. This is far less guilt inducing than my mother’s voice. From now on Katie’s voice is the one I am going to strive to channel whenever I feel this urge to give myself a good talking to.

I don’t normally post links, but this very short article on the chronic-symptoms of those of us who continue to suffer from Lyme long after we’re “supposed” to is very good at explaining the experience in our society and healthcare system.

Share

denial

I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.

As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.

Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.

Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?

Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?

I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?

I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.

Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine.  All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.

When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.

But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.

I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.

 

 

Share

Even keel

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.

Share