This is where I get excited about my life. Or depressed, or confused, or any of the things that make me tick. Speaking of ticks, I was bitten by one in 2014 and contracted Lyme disease, but didn’t start treatment until mid-2015. Big mistake. I started this blog to talk about how I found joy while living with Lyme. Now I am trying to live life AFTER Lyme, if there is such a time. Like all things worthwhile, it ain’t easy.
I have had some vivid, amazing dreams lately. Animals visit me regularly in these dreams. So far, I’ve had dreams with turtles, snakes, elephants, bees, cats, frogs, and dogs. At first, I just bored Katie with retellings of these dreams. Her advice was to look up the ‘meaning’ of the dreams. Well, I did. Let me tell you, this branch of arcana is a rabbit-hole (pun intended, although they haven’t made an appearance yet) you might want to avoid.
A quick caveat: I haven’t smoked or ingested pot since mid-September. Not that my pot habit was particularly large. I usually smoked on cleaning day, or when Lyme made it impossible not to. Anyway, those of you who have ever smoked regularly and quit, you know how dreams rebound. Researchers think that pot inhibits/suppresses REM sleep, but who really cares about the whys.
I am a lucid dreamer. I go back and change the trajectory of a dream if I don’t like it. The other night I dreamt I went to a class reunion (don’t even get me started on what the hell that meant) and I noticed it was nothing but a bunch of old people, and we weren’t dancing. Well, I didn’t like that dream. So I changed it. The first dream was probably the way it is. The second dream was straight up memory from an earlier reunion, where we were packed together dancing to “Brown Sugar.” Much better.
I also have recurring dreams, some I’ve had since childhood. There are two houses that I know intimately in my dreams that don’t exist in my real life. Lots of stuff happens in them, and I’m almost always stressed out when they appear. They obviously represent a place I don’t want to be. I haven’t had any dreams with those houses in them in a while. There have been new dream houses, but obviously temporaries. The other night the house was a dorm of some kind, chilly, modern and all-white. It was dark, cold and rainy outside and the windows were massive and uncovered. Running on both sides of the house were dogs, like all the dogs in the area had come together and were trotting with purpose towards something. I wasn’t disturbed or scared, other than the Stephen King-like disquiet of so many dogs. Occasionally a dog would turn and look at me with a look that said, “Come join us.”
Dreaming of animals is a newer thing and quite different for me. Oh, there were the times two of my dogs visited me in the days after their deaths, or the time I dreamt I had a frog on a leash (hey, it was grad school. I also dreamt my fingers got chopped off and I’m a writer, so…), but rarely have I dreamt like I have in these last months. I’m usually too stunned by the bizarreness of these dreams to change them. I watch them unfold slack-jawed, except for the emotions that course through me: peace, rootedness, amazement, comfort.
When I started looking up the meaning of these animals and my dreams, I learned there are a LOT of people who are looking for interpretations of their weird dreams. There are also a lot of people out there ready to help. Like astrology, the language and meanings are loosey-goosey, open to whatever you are looking for. And like astrology, I don’t believe that dreams should be interpreted literally, or that such interpretations should be mistaken for absolute truth or real-life decisions.
On the other hand, my brain is going through a lot, apparently. My subconscious is very busy at night. Sometimes I believe it’s trying to make sense of the things that I don’t want to deal with. Other times I think maybe it’s just fucking with me, teasing me with the most ridiculous and mundane images possible. A little entertainment from me for me. Haha. Joke’s on me.
Almost all of my dreams have optimistic interpretations: personal happiness, overcoming your problems, being at peace with yourself, good luck, strength, and transformation. I guess my next questions would be, why does my brain feel the need to do this to me? And why is it so relentlessly optimistic?
It is possible that I resist giving myself credit for my own personal strength. In fact, I try very hard to avoid all thoughts of the circumstances that have forged that strength. Instead of congratulating myself on finding meaning and contentment in a drastically altered life, I focus on what needs to be done now. It seems a lot easier than thinking about my life or my inability to change things like COVID or Lyme.
Also, I don’t have the extra energy to contemplate anything more than what I choose to do, and I don’t choose to consciously tell myself how fucking great and strong I am. So my brain has chosen to do that for me in the only time I don’t control it. In essence, I’ve outfoxed my own self and become my own cheerleader through my dreams, because I can’t do that when I’m conscious. I hope all of you have such wily brains. These dreams are a lot of fun, and in their own ways, quite comforting.
Is there a word for female curmudgeon? The formal definition is a “bad-tempered person, especially an old one” and is unisex. I’m not one yet, but I’ve been flirting with the possibilities of allowing myself the luxury. This would require energy, maybe more energy than the daily decision to find something good about the day. That is the choice these days, isn’t it? I don’t know about you, but most days find me on a roller coaster of highs and lows that I’d rather not experience. I’m more of a lazy river kind of gal, and yet the universe has strapped me onto the Tower of Terror.
Pre-COVID, I would have done some the things that kept me cheerful while sick with Lyme: museums, movies, visiting friends, and the occasional trip. This is by no means the whole list, but it’s the one most affected by COVID. Joni Mitchell had it right, “you don’t know what you got ’til it’s gone.”
I have deep, strong inner resources. I’ve had to, with the challenges life has thrown me from an early age. This isn’t the place to get into that, but those of you who know me know that no matter what, I manage to see hope and joy in anything. Lately, though, curmudgeon-ness, or at least the freedom to let oneself become a grumpy hermit, happier alone than with people, is quite tempting. There is a word for this. It’s not even German! Apanthropy: An aversion to the company of men; a love of solitude. I suppose we could quibble about the use of ‘men’ in this sentence, but you get the gist. That’s what I’ve been experiencing, and it’s blossomed under the rich fertilizer of COVID.
The main problem with this scenario is that I’d actually have to say really shitty things aloud. I think this is one of the requirements to becoming a full-fledged curmudgeon. It could be this is why curmudgeon is associated with men more than women (don’t fight me on this. You know I’m right).
Although I care much, much, less what people think of me, it is not in my nature to hurt people, whether they are strangers, friends, or family. This may prevent me from earning the title curmudgeon. I’ll never say never, though. I could become one of those mean old ladies who says exactly what they think.
The pandemic has been hard on virtually every person I know. It doesn’t seem to matter if you are angry at having to wear a mask, or sad that you have lost loved ones, or sick of being isolated, or missing loved ones. I’m not sure any of us can comprehend what we’ve endured yet. I do know it has made me less tolerant. Things that would just slide by irritate the hell out of me, and it doesn’t seem to matter who or what it is. I’m positive I irritate the hell out of people, too. Our national zeitgeist is one of emotional exhaustion. I just had a head start on everybody else.
Most people are new to social isolation, being alone with themselves, or being forced into sharing close quarters with the same people for days, weeks, months on end. Our ability to move, to go anywhere is one of the privileges of living in a wealthy democracy.
Six years ago Lyme forced me to re-evaluate this privilege, but I was no stranger to being alone. I have always been content to be alone, and as the youngest child, that is a good thing. Both of my brothers were out of the house by the time I turned thirteen. My cousin Ginger lived with us for a few years after her parent’s divorce, so it was the two of us for a little while. From my sophomore year on, Mom and dad worked full time, so I was alone before and after school. I reveled in the solitude, happily eating dessert for breakfast, blasting my music and dancing with no one to bother me. I was never afraid, because at that time we had Charlie the Great Pyrenees who would have killed anyone who threatened me. I don’t say that lightly. Anyone who knew me then and came to my house could tell you how scary he could be.
I’m sure I was lonely at times. Who isn’t at that age, especially if it was a Friday night and you thought everyone else but you was out having a magnificent time. But even then, I had things to do. I read voraciously. I listened to music constantly. I tried sewing occasionally, and I baked things when the spirit moved me. I didn’t mind my own company back then and I don’t mind it now.
Then I got Lyme. Or rather, I’d had it for over a year and didn’t know it. When I started treatment, I was so sick I barely noticed my isolation. The first three years were the worst. I’m sure I lost friendships over this period, because virtually all of my energy was consumed with taking care of myself. I may have been a little prickly during this time. Really, who could blame me? People had no idea how I could be so sick for so long. Reconciling myself to chronic illness and trying to educate the people around me made me extremely grumpy.
And I grew used to being alone. Not just, you know, a day or two, but days and weeks of alone. I anticipate that the biggest problem for me in life after COVID will be returning to a social life, as in, will I want to? It’s hard to imagine the anticipation of going to, say, a new exhibition at the art museum, or a concert at Red Rocks. I’m pretty sure I’ll be excited over these things once again, I just can’t quite picture it. For now, though, I’ll put my scanty reserves into holding my tongue and trying to see the positives.
I railroaded my dad into letting me move in with him this past September. It seemed like a good time with COVID and lockdowns and my continued journey with chronic Lyme. The original plan was to sell my house, move in with dad for a while, and later on, move to Costa Rica. Then came COVID and a radical change in plans. I kept my house. Katie is living there and taking care of everything. Keeping the house was more of an emotional decision than purely financial. It didn’t (and still doesn’t) seem like a good time to take risks.
Isolation was wearing on everybody by this point. I had stopped writing, unable to draw on any of the emotional and mental strength writing requires. I was sick of Lyme, sick of COVID, sick of myself. There was no life-guarding or teaching swim lessons.. Airbnb had ground to a halt. Strangely, none of these things particularly bothered me. Trying to help dad solve his everyday problems with his computer, or his phone, or some mail he received, that bothered me.
It would have been about time to go for a visit without COVID. The more I thought about it, the more I realized that I should be down there for a much longer stretch of time. Not anything concrete or pressing, just a feeling that we could, and should help each other through this time.
My best friend Laura ( I can say that, right, Laura?) needed a break from sheltering with the four males in her household and offered to drive me down to Tucson. We set out the day after a freak September snowstorm and arrived in Tucson late in the afternoon the next day for my 14 day quarantine. Our first place was a tiny condo across the street from dad with NO WIFI. I cannot stress this enough. NO WIFI. We got another place and saw my dad every night outside with masks on.
I moved in the house on the 15th day. Dad had cleaned and moved his office out of the room next to my bedroom. This visit was very different from earlier ones. We were going to co-exist for a long time. I truly appreciate his willingness to turn over parts of his house to me, allowing me to make them functional for myself. There was another person in the house, though. My mom has been gone for ten years. Most everything has been left the way she liked it. I helped dad go through a LOT of her things after she died, and we got rid of the things that accumulate in illness and old age: blankets, medical equipment, assorted kitchen things that haven’t been used in years, and knickknacks that must have meant something to someone at some time. We never really moved any of the furniture., though Dad had moved a few items out of his bedroom and rearranged the den and his office, but that was it.
This was more cataclysmic. My mom was precise. Not house proud, exactly. Everything had it’s place for both aesthetic and utilitarian purposes and it was to be kept like that. I felt like I was thirteen again, rearranging my room late at night, knowing mom would not be thrilled.
The kitchen was where I started first. Dad, like many widowers, had adapted to a simple kitchen routine: coffee, OJ, English muffin and sausage for breakfast, granola and milk or a sandwich for lunch, and either crackers, cheese and fruit or a frozen dinner for dessert. He used few of the many things in the kitchen. I started small, rearranging the pots and pans and cleaning out the pantry. Then I forged ahead and went through the cabinets. So many mysteries! Why were there so many mismatched storage containers and lids? Why did we have three candy thermometers? And the biggest mystery of all, why did we keep spices from at least the 90s?
There must have been about thirty containers. I took a photo of some of them. Note the labels and prices. When was the last time you saw any spice for .57¢?
After I cleaned out the spices, I found it easier to change things in the house. I’ve rearranged my bedroom and office. I’ve added plants. The pantry and the fridge are well-stocked, just the way I like it.
We do pretty well, all things considered. Dad’s small retirement community has been and is very isolated, the threat of COVID moving through the community a powerful impetus to not gather or go out. Zoom classes don’t come close to filling that gap. Sometimes, like in my Spanish class, it highlights the differences in how people act during COVID. The three people under thirty have done the bare minimum in terms of isolating and social distancing. They talk about their travels and adventures while the three of us over sixty listen. We don’t do much at all, except go to parks or drive to pick up groceries, or go to appointments that can’t be avoided.
Sometimes I get frustrated when I see how differently people act during the pandemic. I can’t work up too much anger, though. I would probably do the same if this happened when I were much younger. It seems to me that it’s easier to hunker down at home and keep busy when you’re older.
At any rate, I can’t control what other people do. I can only control me. So I write, read, hike (a LOT), cook, clean, and keep trying to learn Spanish. I get depressed, I have relapses. I try not to think about when everybody else goes back to normal and I’ll still have Lyme to deal with. I think about letting go of the illusion of control to gain control, a futile, koan-like pursuit that so far, has not given me any intuitive enlightenment or tranquility.
I have done everything that I can do to protect myself and Dad from COVID and from the crushing loneliness self-isolation brings. Next week the Australian Open begins and we’ll watch tennis together, something we’ve both missed far more than I would have thought pre-COVID. We’ll continue to do our best to get along. I’ll ponder the fact that I have become my mother about many things. And then I will return to what I’ve learned best in the last six years with Lyme: the full-time business of coping.
There is truth to the adage Johnny Depp quoted in “Pirates of the Caribbean”: “Crazy people don’t know they’re crazy”. Whenever Lyme is flaring up, I am always slow to realize it’s happening. The first signs are the same. Aches and pains, headaches, a heavy fatigue, and a brain that skips and skitters. Obviously I ignore them all. If my balance is off, or I drop things, well, it’s because I’m tired, or stressed, or hungry, or too cold, or too hot, or not thinking. Ahhh, the not thinking. I NEVER think I’m not thinking. Instead, I have days like yesterday and today.
I went for a walk early in the morning, when it is cool. The bottoms of my feet throbbed (a strange, but telling sign of a bartonella flare up) and I fumbled and dropped the dog’s leashes more than once. What else did I do? It is the day after that I write this, and I can’t fucking remember what I did yesterday. Another sign I conveniently shove aside. Oh, right. I cleaned the kitchen, vacuumed, and mopped the floors. Then I studied Spanish for today’s class. Did I cook? I don’t think so. I did do the Sunday crosswords. I do the NYT, LATimes, and Washington Post Sunday crosswords. Don’t be too impressed, I’ve been doing them for years.
My friend Kathy Fernandes and I used to do crosswords together waaaaay back in 1978. I struggled mightily back then, but now, on a good Sunday, I can complete all three in under an hour. Jesus Christ. I’ve been doing crosswords for over forty years. I’d better be good at them. So. I did those things, and read a little. Still hasn’t dawned on me that I’m not thinking clearly.
Today I walk early again, without the dogs. I drop off my ballot for tomorrow’s primary at Lakewood’s City Hall, a short ten-minute walk from my house. I come home and let the cat out into the back yard. Oops, the neighbor’s cat is in our yard and Esme streaks away, chasing the other cat. I call out to her, as if she were a dog and would listen. I debate on whether or not to call Katie and tell her the cat is gone. In the time it takes me to check the front yard and walk back through the house, she’s reappears, licking her paws and looking quite pleased with herself.
I check my email. An invoice I paid yesterday has bounced back. I didn’t enter the correct information. I drop a bowl and break it. I check my Facebook feed. Here’s where it gets tricky, ever fucking time. I read someone else’s good news about their work, and start to wonder what I’m doing. I start to mentally beat myself up. I sit down to study. No dice. I sew some masks and realize I have sewn the elastic in backwards. I throw the masks down in frustration and begin to study again. My mechanic calls and tells me my car is nearly dead, unless I want to spend a few grand on the exhaust system and manifold. I don’t know what a manifold is and I know my car is dying. What am I doing with my life? I prick my finger with the seam ripper and stew inside.
This is where the light bulb goes off. Well, it’s hardly a light bulb…more like an old-fashioned match in a very dark cave. “I’m having a flare up,” I think to myself. “I’m not thinking clearly!” Then I think about that for awhile. Is that true, or am I just being (insert a myriad of words here: lazy, stupid, stubborn, stressed-out)? Nope. Definitely a flare up.
The admission gives me an instant sense of relief. It’s not technically an admission, since I’m not admitting anything to myself. I’m recognizing that my brain isn’t working well at the moment. The next step is deciding what I have to do and what I don’t have to do in the near future. Naturally, since I’m not thinking clearly, I decide to write a blog instead of making more masks, studying for tonight’s Spanish class, or writing. My throat hurts a little. Maybe I have COVID-19. It’s not a stretch. Many of the symptoms are the same. I’ve spent a fair amount of time these last few months playing ‘is it Lyme or COVID?’ Nope. Not COVID.
My brain will not be able to stay on any topic for too long. I’m going to have to flit from task to task, accomplishing what I can and letting the rest go. This will mean some time will be spent discovering mistakes and missteps and having to correct them, like having to pick the seams out of three masks and resewing them. I’ll go ahead and publish this before I’ve checked to see if makes any sense. That way I can go back and read it later and wonder what the hell I was thinking.
I don’t know how long I’ve been this way this time. Katie has been house sitting or with her boyfriend. Maybe my friend Laura noticed something on Saturday. It doesn’t really matter, in some ways. In other ways, it does. I left the hose on for over an hour yesterday when I was filling the pond. What things would I overlook if I was alone? The fog will disappear at some point, and I’ll forget all about it until next time. Then I will go through the whole cycle once again, none the wiser, again. A perfect Lyme circle.
I stopped baking almost twenty years ago, after I stopped eating gluten and dairy. Katie wasn’t big into most baked goods back then and I didn’t need the sugar, fat, and calories. After I got Lyme disease, these foods were inflammatory, something else I didn’t need. I got used to not eating any sweets and didn’t miss sugar much at all. I did miss baking. Baking and cooking are two entirely separate universes. Cooking has to be done, and isn’t always a pleasure. Baking is an extra, something done out of love.
Baking was the first thing I wanted to do in the kitchen. When I grew up, my mom baked every Saturday afternoon while she listened to the Metropolitan Opera live on the radio. She turned out many, many treats over the years: chocolate oatmeal cookies (my dad’s favorite), oatmeal raisin cookies, snickerdoodles, peanut butter cookies (I liked to dip the fork in flour and make the criss-cross lines on top), iced pumpkin spice cookies, applesauce cake, brownies, pies, spice cake, and my favorite, her cherry cheesecake. The list was deep and rotated throughout the seasons (strawberry shortcake was the shortest—a few brief weeks in late May to early June).
Whoever helped her in the kitchen got the privilege of licking the beaters. I loved to watch her bake. As a scientist, she was well-versed in following recipes exactly. She taught me to sift flour and level off the measuring cup with a knife. I learned to measure fats like Crisco using water (fyi: for 1/3 c fat, fill the cup to 2/3 water, add fat until submerged and water is at 1 cup). I learned how to cut in butter and cold water for an extra flaky pie crust. I learned to cream sugar and butter, add the eggs one at a time, then the flour, and last, stir in the chocolate chips, oatmeal and nuts. My interest until twelve or thirteen was strictly mercenary. I wanted to be the one to lick the beaters and I got to spend time alone with mom. At thirteen, I decided I was going to bake all the birthday cakes. Mark and Mike both loved German Chocolate cake, so that was the first cake I learned to make well. Soon I could make caramel cake, pineapple upside down cake, and all of the easy ones, like chocolate cake. Next, I tackled breads. By age fourteen, I was in charge of making the Parker House crescent rolls for Thanksgiving and Christmas dinners. I learned to make sourdough bread and mom’s yeasty cinnamon rolls.
Somehow, I didn’t get around to learning to actually cook meals. At college, I made do with scrambled eggs, baked potatoes, and ramen soup. I continued to bake, though. I’ve got a scar on my inside left forearm from a carrot cake incident. It wasn’t a total loss, because I saved the carrot cake. I started learning to cook real food my junior year of college: spaghetti and meatballs, pot roast, and casseroles
Oh, I had some disasters. Custard pies were particularly difficult. While learning to make lemon meringue pie, I made one where the lemon filling was loose and wobbly. Dad joked about it while we were at a Shell banquet celebrating his department’s discovery in Alaska. It was a big night at the Houston Marriott with at least sixty or seventy people there. I was so proud to sit with Mom and see dad called up to speak. He denies this, but he compared my pie filling to the texture of the oil they found in Alaska. I was not amused, although everyone else found his comparison funny. I did master the filling after that, if only to prove him wrong.
I baked fairly regularly for the next 25 years, until I developed intolerances to gluten and dairy after my eleventh surgery. After that I didn’t bake at all. Well, the pandemic and Bob’s Red Mill changed all of that. Katie and I found a bag of Bob’s Red Mill 1 to 1 flour substitute and decided to try a little baking during week three of the great isolation. Thanks to some help from one of our superb medical dispensaries, I baked a batch of cookies that tasted great. I haven’t stopped since. I’ve made shortcakes, carrot cake, and more cookies. Now I know why I quit baking. I have no willpower to resist. However, extraordinary times require extraordinary measures. I am comforted by baking, going back to a time when everything was made better by a fresh batch of cookies straight from the oven.
It’s no wonder we’re all rediscovering the joys of sewing, baking, gardening, and other homey pastimes. We don’t know what the future holds, other than hard times. If we have a shortage of supplies, like sugar, eggs, or butter, I have cookbooks with war time recipes, using substitutes for eggs, butter, and sugar. They were passed down from my great-grandmother, grandmother, and mother, and now to me. That in itself is comforting, a reminder that there are many things that can be done even in the worst of times to help cope with uncertainty and fear. Just the smell of cookies baking grounds me.
Of course, I shouldn’t eat most of these treats. Sugar and refined foods stir up my autoimmune issues with Lyme disease. But I have no where to go, nothing that has to be done. I spend my days writing, cleaning, gardening, learning Spanish, and cooking. Fortunately for me, I love doing all of them. Have I put on a few pounds? Maybe. Does it really matter right now? Not at all.
Forgive me if I don’t have much sympathy for your quarantine woes. Unless you are trapped in an untenable, dangerous situation, it’s not that bad. After five plus years with Lyme, I have had to self-quarantine off and on, sometimes for months. Not for the same reasons, nor in the same way, but the idea of staying with myself and enduring has become, while not enjoyable, also not that difficult. That small, mean part of me feels vindicated after years of trying to explain what it’s like to have Lyme. There are several big similarities: poor/inaccurate testing, puzzling symptoms, lack of treatment, and no agreed-upon protocol. Like millions of Americans, I’m outraged at the flaccid, impotent response of our government, and in particular, the CDC. Unlike most of them, I’m hardly surprised. This is the same CDC that has disparaged, obfuscated, gaslit, and even implied that there is no such thing as “chronic Lyme.” They have undercounted, underreported, and deliberately misled Lyme patients. They’re doing the same with COVID-19. We should be outraged. I know I am.
For a while, I thought the quarantine and economic uncertainty would make everything worse for me. The opposite has happened. I feel a powerful sense of relief. I am no longer alone in my battle. Now almost everyone knows the fear and anxiety that accompanies not knowing what to do in the face of losing jobs, insurance, and health. Suddenly there is less judgment directed towards those who have been quietly experiencing all the things the pandemic has brought to all of us. There are real conversations, money and programs directed towards making sure everyone gets a little help through a situation that happened through no fault of their own. A lot of you are finally getting it.
This is not a slam against anyone I know. Unless I’ve experienced something firsthand, I don’t really get it, either. We’re all scared that this is the lottery we have unwillingly entered and don’t want to win. I don’t want anyone I know to get sick or die. I don’t want to die, either. But to protest that you are the victim of tyranny because you can’t get a haircut or go to a baseball game is the height of privilege and a misguided faith in ‘American exceptionalism. Maybe America was too successful at giving us an outsized faith that getting sick and/or dying is a choice: more exercise, supplements, making sure your job has benefits, praying, you name it, we’ve given it credit. The fact is, none of us are immune to ill health. Yes, there are many, many illnesses that are life-style related. Our current model of ‘blaming the victim’ and only doling out medical care to those who have ‘earned it’ is falling woefully short in the time of a pandemic. It fell short before this, only most Americans didn’t know it, unless they were struggling like me.
I have had to develop my own network of information, treatment plans, and doctors with Lyme disease. It shouldn’t be this way, and I don’t know the solution. I only know that many of my friends are experiencing this jarring discovery that government agencies that we have no choice but to trust are not entirely trustworthy. It is disconcerting at best, and deadly at worst. When did we become a country that places profits over lives? Politics over solutions?
Many of you are now seeing firsthand the frustration and confusion I have dealt with for years, and I have to tell you, I am so here for that. The personal and social toll of unreliable health care is heavy, and I’m glad to share it, and more importantly, to be believed. That I feel less alone is one of the weirder reactions I’ve had to the pandemic. Go figure.
Feel free to tell me how hard this whole quarantining lifestyle is for you. How much you miss going out with friends, or going to work, or seeing a movie. How worried you are about your finances, or your kids who aren’t in school. Just know that I’ve been living this way on and off for over five years. I have been depressed, elated, scared, happy, hopeful, despairing, and above all, coping. You can do it too.
There’s a difference between quarantined and sequestered. Quarantined means YOU have the illness. Sequestered means I DON’T WANT THE ILLNESS. I’m back to where I was three years ago: stuck at home being sick. Bartonella, one of my co-infections, is the bane of my existence. Borrelia burdorferi and babesia have been contained (not eradicated, contained). Not Bartonella. It continues to rage inside of me, hiding and dodging despite our best efforts. So I’ve started a new medication, Rifabutin, a powerful antibiotic used in AIDS patients as a prophylactic against mycobacterium avium complex (whatever that is, it’s probably deadly if you have AIDS). In Lyme patients with Bartonella, Rifabutin has proven useful in recalcitrant patients like myself. The bacteria hides in white blood cells, where other medications can’t reach. Rifampin kills the bacteria, and also the host white blood cells. This means that my WBC count is going to drop. A lot.
Because I’ve taken quite a few drugs with nasty side effects (mainly related to the liver), I wasn’t worried at first. I texted Katie and bitched about the cost ($484!). When I got home, Katie read the drug warnings on the package. She didn’t like the sound of this one. If I get sick, I could get very, very sick, and if the illness is serious enough, possibly die. My doctor warned me of these things, but I glossed over the warnings, because what choice do I have, really? I can feel shitty most of the time or I can take another shot at feeling better most of the time.
In my last blog I wrote about Bartonella’s nasty symptoms, and they have not improved. I feel disconnected from my own reality, as if I am watching myself exist. Panna Naturopatich describes chronic Bartonella very well (http://www.pannaturopathic.com/bartonella-treatment), along with treatment options. Feeling disconnected from one’s own life is a strange, disturbing feeling, and I want it gone. That’s why I’m willing to take Rifabutin. That’s why I’m sequestering myself at home for the next 4-6 weeks. I cannot risk getting sick.
Katie strongly urged (okay, insisted) that I sequester myself at home until we know just how low my WBC will drop. She’s right, as are the two medical professionals I know who also advised me to be very careful when I explained my situation. I’ll get a blood test two weeks after starting Rifabutin. I’m a little over one week in. Friday was my last day of work for a month, and I’ve stocked up on groceries.
I like the word ‘sequester’ as opposed to cloister, cut off, insulate, withdraw, close off, or segregate. I don’t really mind hide, or the more philosophical enisle, or island. Secrete just sounds wrong, and draw back is too close to the truth. I have drawn back, for both my mental and physical health. I’m cocooning, without the promise of emerging better and more beautiful, or the coziness and growth cocooning implies.
What will I do with myself? I guess it depends on how bad I feel. The first week was rough, as it often is when I start a new medication. My body is worn out from fighting recurring flareups and die-offs. If earlier herxes are my guide, there will be many days where I won’t feel like doing much more than playing games on my phone and lying in bed. When I feel okay, I’ve got yard work, reading, writing, binge-watching TV, cooking, and cleaning. I can walk the dogs in the park if I stay away from people. I just can’t go to public places where lots of people congregate. That means no Rec center, no movies, no going out to eat, no library, no grocery store, no writing classes, and no volunteering. I’m sure some people would shudder at the thought of not being able to go out. I’m not one of them. I’ve long joked I would make a great astronaut, because I have no problem being confined to small spaces for a long time, as long as I have things to do.
This is one of those times where I have to view Lyme as a full time job. I am making the transition into accepting that Lyme is my full time job now, its shitty, erratic hours and insane demands on my life crowding out everything else. Once I look at my voluntary sequestration that way, things become much, much easier. This is not, once again, a ‘poor me’ post. This is a reckoning with a new drug and the possibility that Lyme might be with me forever. I am learning to deal with it, in much the same way I deal with any setback; imperfectly and less than enthusiastically, I will inch forward until it’s over.
I’ve been thinking about suicide a lot lately. Wait, don’t panic! Not in a real way, but in a Lyme way. There is a difference, and it is significant. Psychiatric problems from Lyme are well-documented and common. After all, there are, quite literally, bugs in your brain, wreaking havoc. So when I say I think about suicide, there is a layer once removed from actual thought of suicide. My recent psych problems dovetailed with an article I recently read about a family who has five sons suffering from Lyme. One took his own life. He was twenty-four. https://www.lymedisease.org/touched-by-lyme-when-the-perfect-storm-is-too-much-to-bear/
For me, the jags of crying, depression, anxiety and suicidal thoughts are unwanted surges in an unwell brain. The trick is to hold on and wait until the storm subsides. You might ask how I know this to be true. I’m not sure why. It could be a product of age and a lifetime of introspection. If I were much younger, or not used to examining my thoughts, I might think this was a real crisis. I’m not saying I haven’t felt depression and anxiety as true emotions. I have. The nature of Lyme neurological problems gives these feelings a different flavor.
When the surge subsides, it is though it never happened. There is no residual fallout, nor is there guilt, or lingering thoughts, another reason I know they’re not real. The inflammation Lyme causes acts as an electrical probe that homes in on the parts of my brain where emotion lives. It is more annoying than anything. A thought will pop up, unwanted and unconnected to much of anything (unless I’ve been on Twitter reading about the GOP and Trump), and lodge itself in the forefront of my brain for a few hours or a few days. I will cry at nothing. I might watch a cheesy movie, or watch videos like people reuniting with their dogs to help release the tears. It is a physical, not emotional reaction when Lyme is the cause, and I feel relief after crying. The depression/anxiety part is exceptionally frustrating. In the past, pre-Lyme, I sometimes got mildly depressed, and very, very occasionally experienced anxiety (like before my graduate school lecture, duh) but never in an irrational way. If you suffer from either of these regularly, wow. You have my deepest sympathies. My anxieties drift into obsessions, like buying lottery tickets or never leaving the kitchen dirty overnight. They don’t make sense, but it’s easy enough to pick up tickets or clean up.
I have never, not once in my life, thought seriously about suicide. I would go so far as to say I didn’t understand why anyone would want to take their life, until one cold February day two years ago when I was extremely sick, and had been for over a year. I realized I could easily reach a point where I wouldn’t want to go on if I knew I would never feel better than I did that day. This newer phase of neurological problems is more abstract, less direct and real. I’m not explaining myself well here. All I can say is that the flashes come and go quickly, and they don’t touch me deep inside. I’ve moved from being upset about them to being intrigued. What is happening in my Lyme brain? I’d love to have an MRI while I’m in the grip of what I call my Lyme neuroses/psychoses.
This is NOT a cry for help or a ‘poor me’ moment. It is an attempt to explain one of the more bizarre Lyme disease symptoms. I’m not embarrassed to talk about this the way I would be if I didn’t have Lyme (and that’s a whole other topic, why most of us would rather talk about our sex lives or money than admit to suicidal thoughts, anxiety and depression). It’s one of the dozens of strange things that Lyme does to my body, like my aching teeth and liver today. I didn’t recognize what was happening at first. Once I did, he imagery that came to my mind is from an old Star Trek movie, the one where Khan puts a worm in Chekhov’s ear. https://youtu.be/3i42Smtbmeg
Each reaction in my body becomes something I deal with. My coping skills have moved into gold-medal territory by now, honed by injuries, endometriosis, surgeries, and now Lyme. As for these particular symptoms? Marijuana blunts them, housework makes them bearable, and sleep removes them entirely. I cook, or watch stupid TV, or rage against Trump and the GOP on Twitter. I drag myself to work and forget about Lyme for a short while. I go out with friends if I can, and listen to their lives. I walk the dogs. I write obsessively and badly. One day I’ll wake up and my brain will have regained its’ equilibrium and clarity and I’ll get back to fully living for a while until the next cycle comes. Then I will go back to my mad coping skills until the storm passes once again.
I can always tell when I’m feeling better. First sign is a manic frenzy to get my life “back on track”. I play catch-up and start to think about the future. That instantly brings on depression, anxiety and panic, so I try to balance it out by watching romcoms. I like romantic comedies. A LOT. The smarter and funnier the better, but I’ll settle for a cheesy Hallmark Channel movie, too.
I’ve yet to see one where the chronically ill hero finds the love of their life. That’s a plot that could go wrong in so many ways. Meeting another chronically ill partner? Oh, great, two sick people shlubbing along together, finding happiness in spite of barely living. Or one person “saves” the other, making life worth living. Yechhh. Or maybe the sick one keeps their illness a secret, but when it finally comes out, the healthy one finds they love the person no matter what. Right. That’s a totally true story, happens all the time.
The problem with all these scenarios is the chronic illness. Like a third wheel, it’s there, along for the ride whether you want it or not. I don’t know what the dynamics are for stable couples when one finds out they have a chronic illness. I’m sure it’s the same as everything else: some partners bail, others rise to the occasion, but most probably grope along blindly, trying to figure out what to do as problems arise. I don’t have that right now. I have Katie and Dad, of course, but they are family, so far from a romantic partner that it’s no comparison.
Well-meaning people in my life worry that I’m not happy being single. Well, I’m not always happy, but that doesn’t have anything to do with not having a relationship. Maybe they can’t imagine being alone in their own lives, so they project their own fears of being alone onto single people, . In many ways, most ways, in fact, I’m much happier alone. For some people this is simply impossible to understand, especially people who know that I love men and flirting. It’s true, though. How much of this is due to Lyme and how much is due to personal evolution is difficult to discern.
Romcoms often bring up lots of emotions for me after the ‘high’ from the always happy ending, most of them cynical. I mean, at the heart of every romcom, regardless of how the writers frame the story, lies the fantasy that there is true love for everyone. That’s not true, it’s never been true. Is it a modern promise that can’t help but make most of us disappointed? Or is the modern standard so high that romcoms have to exist to keep the fantasy alive? Or maybe they exist in the same territory that fairy tales and romance novels; they satisfy our yearnings to be loved.
That’s the thing people pity single people for, isn’t it? “I just want you to be happy” is code for “I want someone to love you”. “I don’t want you to be alone” really means “I want someone to want to be with you”. It doesn’t matter how fulfilled your life is in every other area, the message is loud and clear: you can’t be satisfied until you have that person. In the most primitive terms, it’s biology at work, making sure we procreate and continue having little humans to populate the earth. I’m certainly long past that stage. I’m in the stage where I’m supposed to be enjoying my grandkids (I’m not sure I care about that, either. Katie has never wanted kids), and romantic love is a comforting memory or a real stroke of luck.
I think I like romcoms because they always have happy endings. They often start with one or both protagonists going through the worst time of their lives, followed by the soul-cleansing moral journey of discovering what is important in life, and finishing with the satisfying message that if you make the right choices and get your karma straight, you’ll be rewarded with true love. Just writing it down makes me realize how ridiculous the whole premise is. And yet I still come back for more.
The pay-off is catharsis, a feel good moment that cost me nothing. Since my Lyme disease isn’t going anywhere soon, I need an escape that doesn’t involve alcohol, physical exertion, money, brain power, or too much effort. I tend to go through phases of feeling like I want someone, but not so badly that I’m willing to, as they say in romcom vernacular, “put myself out there”. In truth, I don’t have the time or energy to put into anybody else but myself and I am a-ok with that.
I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’. After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.
It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.
It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.
After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.
Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.
For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.
However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff. It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?