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 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?
I used to think I wasn’t a fearful person. Armed with statistics and a healthy lifestyle, illness and accidents were part of a lottery I thought I had little chance of winning. Then I was bitten by a tick. Now I see that I had plenty of fears, I just didn’t admit to them. Except for spiders. I was afraid of spiders. Now I’m afraid of ticks. I don’t know if I will ever willingly go into actively tick- and Lyme-infested woods. Going through the last four years again is unfathomable to me.
The list of my fears is not rational. Is anyone’s? I am scared of, in no particular order, tornadoes, earthquakes, cycling on roads, drowning in the deep ocean, and losing my daughter. Oh, and volcanoes. Being encased forever in hot magma scares the crap out of me. I realize my chances of dying in a tornado, earthquake or fire are slim to none, but they evoke a primal terror inside of me, as does drowning in deep ocean waters. These fears limit me only slightly, but I would think twice before I lived anywhere along the ring of fire, or tornado alley. Now that I live in the suburbs of Denver, fire is not a real fear, but I definitely live in fire danger country.
I am not afraid of flying, drunk drivers, snakes, mice, or smaller spiders. Large, unexpected spiders make me jump, but I’m not gonna die of fright or anything. I should frightened by cancer, falling down in my own home, fire, heart attacks, strokes, and gunfire, but I’m not. I am less and less afraid of death. I do retain a perfectly healthy fear of how I die.
Getting into existential fears is pointless. Of course I’m afraid of failure, success, commitment, being alone, love, not being in love, and why I exist at all. I’m not particularly afraid of speaking in front of people or rejection. Any sane person should be afraid of being shamed in public or shunned. I think I probably should have titled this ‘My Personal Fears’. Fears, like one’s belief system is highly personal. No two person’s lists are the same, really. I might argue that these two parameters truly define who one is.
This completely informal list of neuroses has changed, obviously. Life experiences shape one’s fears. Fears about illness and aging have moved to the front For instance, is Lyme like polio? Will it come back with a vengeance when I’m older and physically vulnerable? What if I do something foolish, like trying to descend a flight of stairs with two suitcases while I’m traveling and fall? What is I’m working in the yard and have a stroke? I never gave a moment’s thought to any of these scenarios when I was young. The slow, inexorable accumulation of insults, injuries and illnesses has changed my list.
My fear of ticks is actually grounded in statistics and science. Global warming has exacerbated the upswing of vector-borne diseases. Mosquitos, ticks, and fleas hang around longer because there are less sub-freezing days. We encroach more and more on natural habitats of the deer, mice and other animals these insects feed on, exposing ourselves to an ever growing list of diseases. There are diseases in the water and dirt around us. Houstonians know this firsthand after hurricane Harvey. Southwesterners know that Hanta virus and Valley Fever fungus live in the dust and can kill. People who live where mosquitos are know about Zika and West Nile Fever. I don’t think my fears on this front are misplaced.
With Lyme, I have discovered earlier than some people that I am terrified of losing my mind. I think I could live with loss of mobility, or hearing, but I’m not sure. I also think I could live with chronic pain, but I’m not sure. I am positive I cannot live with the loss of cogent thinking.
As I wrote out my list of significant fears, I left out the everyday fears, the ones I have carried most of my life, because I wasn’t quite aware of them. The biggest one is protecting my deaf side. I do not climb trees. I do not place myself in physically precarious situations, like bungee jumping, cliff diving or skiing. I guard that side of myself unconsciously and zealously. This is another fear, like ticks, where my fear is valid and my vigilance necessary. The other constant fear didn’t begin until thirty-one years ago, when Katie was born. I share this fear with nearly every parent, the thought that I might lose Katie before I die is always there, a kind of low-level current that trips when she’s driving late on a snowy night and I haven’t heard from her, or when she gets sick.
Lifestyle and genetic illnesses don’t scare me at all. My biggest indulgences are smoking pot off and on, depending on how sick I am, and salty chips. I don’t have a family history because I’m adopted. Aside from Lyme, I have zero health problems. No high blood pressure, no cancerous moles or heart problems. No medications outside of Lyme. I tend to feel my chances of cancer are dictated by genetic mutations and bad luck, so I play that lottery without worrying. If it happens, it happens. I’ve worn sunscreen virtually my whole life (thanks, Mom!) and have had one sunburn.
So that’s it. A somewhat incomplete list, to be sure, because I could reel off a whole other list of minor anxieties and half-baked fears. But these are the biggies, both rational and irrational. Right now, and perhaps for the rest of my life, Lyme disease remains the hulking specter that overshadows all other fears.
I am bouncing back from a particularly shitty relapse. I’m feeling overwhelmed and hopeless, like I can’t manage my own life anymore. The worst part of this relapse and aftermath has been mental. If you haven’t heard from me in a while, you are not alone. I prefer to be wiggy in private. To add to all this crap, it’s been four years since I was bitten by a tick. FOUR YEARS. I’ve read anecdotal evidence that people have relapses around the same time they were bitten. If so, it makes perfect sense that I relapse now. On top of that auspicious milestone, heat causes some Lyme patients (me included) to feel much worse.
This one blindsided me. I was, I thought, on the road to real recovery. And so began valuable lesson #1 with Lyme ‘recovery’: plan to relapse at any time whether you like it or not. The hallmarks of any valuable lesson is suffering, humility, pain, and a bunch of other emotions I avoid. Denial, my old bitch of a friend (denial is female in my world), came for a nice visit until I dragged my ass to my LLMD. It seems that my bugs like my brain. It’s where they hide when I’m feeling good. He announced the return of bartonella. YUCK! Bartonella is the worst. Sore feet, sore teeth, ear pains, headaches, neck aches, muscle aches, creaky joints, muscle cramps, watery, itchy, achy eyeballs, and mental problems. I love a good euphemism, and “mental problems” is right up there with “small setback” and “not too bad”. Why is it so hard for me to admit to depression, anger, anxiety, hopelessness, lack of motivation, and obsessive compulsiveness? Everybody has some of these feeling sometimes. If anything, I should announce them like a badge of honor, because I have bugs in my brain.
Denial left the house and self-pity moved in. I wallowed around with him (of course self-pity is male!) like a pig in a mud bath for a few weeks. I cleaned. I cooked. I slept a LOT, walked the dogs and gardened very early while it was still cool. That was all I could manage. Self-pity is that friend who doesn’t like any of your other friends. After that, I had hours to fill with all those fab feelings of worthlessness, sadness and guilt. I was able to read some ‘beach read’ books, and the sheer mindless entertainment helped a little.
It wasn’t until I found Downton Abbey that self-pity had a challenge. I know, I’m late to the party. At this rate, I’ll probably start GOT in 2022, and Breaking Bad in 2024. What can I say? I was hooked. Katie will remember this as the summer her mom sat in the cool dark of her bedroom at midday, the sunlight cracking the edges of the blackout curtains, lost in the delicious machinations of the Crawley family.
My relapse was also worse because I had four months of relative clarity and sanity. Is it harder to bounce back mentally each time my brain becomes inflamed? Is it harder for anyone else in this situation? I meet so few people who suffer from episodes of an inflamed brain. Is the quality of the crazy different if it’s a chemical imbalance, rather than an illness-induced debilitation? These really aren’t the kind of questions I can ask most people. There is the possibility that I won’t ‘work through this phase’. What if I never truly get well? What if I have to live a different kind of life than I thought? What would that look like and would it be so bad?
In a sense, I’ve been given the gift of getting my priorities straight. What adjustments am I willing to make to concentrate on what matters most to me? And what matters to me the most? At the end of the day, how do I want to have spent my time? This is not an easy task. The options all have good and bad sides. What irks me the most is the adjustment I am struggling with now: the loss of endless possibilities. The emphasis is on ‘endless’. That part of the equation is simple. I can’t do it all. I have to make the hard choices in order to stay healthy. This must be what makes Dad worry so much—he is far more aware of the implication of limited possibilities than I am.
What I must do is what I have always done, and that is to find the positives in relapsing. In that, I have boundless confidence. It’s what I do best, even with an inflamed, fragile brain (and for me, my brain is my vanity, my Achilles’ heel) and low, low self-confidence. As with all things Lyme, this will pass and I will feel better, at least for a while. If I can figure out my priorities and can handle my new levels of expectations, then everything else should be gravy, not the other way around.
I discovered two things about myself the day Katie was born: I would die for another person, and I would kill for another person. That a love so fierce could spring up inside of me was a surprise I think no new parent can anticipate. I’d been waiting for her my whole life. Why have I not written about her until now? I suppose I felt that we’re far too close for me to be objective. Then it occurred to me. I don’t have to be objective. She is the center of my universe. Anyone who has known me for even a short time knows this.
Sometimes I don’t know why I love her so much. She’s fractious, strong-willed, and completely uninterested in pleasing me. Within hours of being born, she was kicked out of the maternity ward for disturbing the other babies. I was amazed when I heard other babies crying. They sounded puny compared to the robust shrieks that Katie produced. The only times she wasn’t lustily demanding attention were when she nursed or slept. Katie was a world-champion sleeper and eater. She weighed 26 lbs at six months. She took naps until she was seven.
Katie is an artist. She would not take direction or classes. A wise art teacher told me to buy her supplies and books and leave her be, so that’s what I did. Sometimes I think she is part mermaid, part fish. She took to water like, well, a duck. That was her first word, at seven months. She hasn’t shut up (at least to me) since. She drew this picture when she was five:
This is how she saw herself, even then. She loved animals from the time she was conscious. Once, we went to a pioneer farm outside of Houston with my parents. While we weren’t looking, two-and-a-half-year old Katie was found hugging a sow who weighed at least 400 lbs. The farmer was apoplectic. Katie was thrilled.
She is one of those lucky people who knew she wanted to work with animals or make art from a very early age. She has never deviated from this, and today she is working to become a graphic arts designer for a zoo. I don’t know where these traits came from. I am not artistic, neither was her father (There are reports that this came from an uncle on her father’s side, but no one is sure, because that side of her family is shrouded in secrets and mysteries.) No one is obsessed with animals. My side, of course, is a blank. We don’t know what my aunts, uncles, or cousins love because I’m adopted.
I think this was why her birth had such an impact on me. She is the only person in my world who looks, laughs, and talks like me. She gets me in a way that is primal and instinctive, the same way I get her. I can’t judge how I was as a mom. I made many mistakes, I know this. I also know that I did some things right. She knows I love her and accept her for who she is, no matter what. There were times when it might have been easier to crush her spirit to get her to do what I wanted, or to make my life a little less difficult. My intuition told me this was not the way, it would never be the way.
There were, as expected, many rough patches. The usual preadolescent angst made her snotty and dismissive. A major upheaval in eighth grade damaged and delayed her teen years. She understands #MeToo, just as I do. She left home for seven years, a necessary time to grow. She returned when she was twenty-five. I recognized she had grown, but my ex didn’t. They have long been oil and water, and as she’s gotten older, they have started to figure out how to have a relationship.
We live together now, in a house big enough to give us our own space. We prefer living with each other. There are never arguments about much of anything. Someone does whatever needs to be done. Oh, sure, we bicker sometimes, and sometimes get frustrated with each other. We’ve reached that stage where she is right about 90% of the time, damn it! It does work, though, mainly because we both need a lot of space.
When I got divorced, and later, after I was sick with Lyme, Katie has risen to a true equal. She has taken care of me as I took care of her. We will always be mother and daughter, but we are also two single women who are friends. Quirky, loyal, artistic, quicksilver, and most of all, herself, I will always love her more than any other person on earth, unless she decides to have kids. I’m not holding my breath, and it won’t matter one way or the other, because like I learned from my parents and she is learning from me, I love her anyway, and all I want is for her to be happy.
It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.
We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.
Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.
I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!
I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.
I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.