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.
My brother Michael died of a heart attack Sunday, August 29th in Lafayette, Louisiana while Ida banged through the state. He was sixty-six years old. His death was not a surprise, he had been in poor health for the last five years or so. The surprise for me was the depth of my mourning. We had not been close for some forty-five years until he quit drinking over ten years ago.
One of the things I’ve learned the past five or six years is that no one knows what demons other people are battling, why they turn to destructive things to deal with pain. Because that is what almost everyone who drinks, or does drugs, or even smokes are doing. My brothers were handed a raw deal from the start of their lives, long before they had words to protest what fate handed them. They were the last two of five children born to a young couple in the wasteland of post-WWII Germany. The mother abandoned the family soon after Michael’s birth in 1955. The children were removed and placed in an orphanage. My parents adopted them in the summer of 1958 through the Mission Methodist Home in San Antonio, TX.
They now have a name for what my brothers experienced before they were adopted: attachment disorder. Essentially it means that a person’s earliest experiences were lacking in love and nurturing. In turn, as they grow older, they have social issues, trouble bonding with people, and trust issues. One can only imagine the unarticulated pain and anger this causes. The amount of damage in my brothers went by age. Mark, my oldest brother, was profoundly scarred, Michael less so.
Michael was a sweet child, and made friends easily. When he entered his teens, he discovered alcohol. I think alcohol numbed him to the pain he held inside. After he graduated from St. Stanislaus HS (a private school in Biloxi my parents hoped would help him), he joined the army. After that, he was AWOL for years. And so my relationship with him was AWOL, too. He called my parents when he needed help, or when he was feeling sentimental about a family that had gone on without him. Alcohol derailed much of his life, causing all the rifts and problems and health issues you would expect.
And yet, he survived. He worked as a roughneck and married a native Louisiana woman from a large Cajun family. He called occasionally to tell me he loved me and to see how I was doing. I was angry with him for a long time. Oh, I had what I thought were good reasons, but in reality, I can see that they were flimsy, based on my own insecurities and pettiness.
He was an active alcoholic until 2007 or 2008, when a doctor at the VA told him he was one drink away from dying. As far as I know, he never took another drink after that. That’s when he started to call me more often, after over thirty years of absence from my life.
At first it was rough going with Michael. I let my anger and resentment get in the way. Then I decided that I was through being defensive and made a point to always say something positive to Michael, something he had done right. That wasn’t hard. He had quit drinking. He cared for his ill wife for years. He loved his step-grandkids.
Something wonderful happened over the last two years. Michael started getting therapy from the VA. He reached out over and over, showing a vulnerability and willingness to grow. He quit smoking cigarettes when another VA doctor told him he could unclog his veins in his heart and legs, but if he didn’t quit smoking he would die.
In the end, Michael couldn’t outrun his bad habits and genetic predisposition to heart disease (Mark died of a heart attack, too). What sucks is that I was just getting to know him. I think he was just getting to know himself, and to look forward, not backward. He was going to take courses at the community college through an outreach program provided by the VA. He’d faced his demons and he was winning. There was so much good to him when I looked, and an inner strength that I’m not sure he knew he had.
Michael was able to open up to our dad. He asked if he loved him and if he had made him proud. Dad answered yes, that in the past two years he had seen how hard Michael had worked and how many obstacles Michael had overcome. Dad has always felt that he missed the mark when it came to recognizing what Michael’s needs were, and he told him so.
The last time I talked to Michael was Saturday morning. He was nervous about starting school and learning to use a computer. He was thankful that he had the courage to talk to Dad and felt they were close, perhaps for the first time in his adult life. I told him I felt I had a brother again.
It’s going to take me some time to work through this. There were many times I could have done more. Meanwhile, I remember that he introduced me to black music: soul, funk, and blues. He was a rock-solid Cajun cook and made a great jambalaya. He loved working on cars. He loved to fish and sit with friends and shoot the breeze. He always told me he loved me. There were times when I parroted the words back, but lately I meant them.
All of this sifting through possessions and selling my home have gotten me thinking about my identity. Self-identity is a uniquely human trait, a sum of many things that defines who we are. I started off with an obscured identity, one attached to the circumstances of my birth and subsequent adoption. I had another name, another birth certificate. I firmly believe (along with most other adoptees) that this caused a fundamental scar that has, in many ways, defined my identity more than any other factor. In adoption literature, this has been called the “primal wound.” Very often it is one of the first things people learn about me.
Another event that has defined my identity was a fall from a tree when I was seven. I cannot hide that I am deaf in my left ear for long, nor do I try. It has impacted my life on a near daily basis for fifty-five years. One of the top hearing specialists in the country(the son of one of my dad’s neighbors in Tucson) did an informal test one night after we had eaten dinner. He said that even if they could restore some ability to hear in that ear, my brain had forgotten how to hear on that side. Isn’t that amazing, that the brain could forget something so fundamental? Three years ago, when I was fifty-nine, I got a tattoo of the mute symbol inked behind my left ear. This indelible mark is an announcement that my deafness is a permanent fixture of my identity .
I’m a straight, mostly white woman. I have a BA in Anthropology and an MFA in Creative Writing. I’m a mom of one and a daughter. I currently have Lyme disease. I like movies, books, cleaning, cooking, reading and swimming. These are all markers of my identity that I most often want people to know about me. I don’t identify as English or Hispanic or Catholic or Jewish or descended from (blank). Those labels hold no interest for me. My genetic background is too complicated for explanation, and I belong to the atheist tribe, a highly fragmented group.
It’s also not by accident that no possessions or places are on this list. Both of those things are complicated. I’m from a lot of places but not really. I was born in Texas spent 39 years there. I’ve lived in Louisiana, North Carolina, and now Colorado. I’ve always had possessions, and like many of you, have collected more and more of them as time goes on. I’ve gotten a lot of pleasure out of most of them (not cars, though. I am not interested in cars at all except as a means from point A to B). I can tell you when I bought this or that, and I take care of them. But what does where I am from and what I own say about me? I am a Texan by default. My relationship with Texas is complicated and I don’t consider myself to be a Texan. Many of my possessions were acquired during my 29-year marriage, a time that doesn’t please me to be reminded of anymore.
The truth is, neither of these things are that important to me. However, there is a slightly larger than small place inside of me that cares about my identity as defined by possessions and places. In America, besides what you do, where you are from and what you have managed to acquire are two of the most basic facts people use to show their self-identity and their ability to be firmly rooted in life. Most of us have proud pictures of ourselves or someone in our families in front of their houses. Sometimes the people are standing next to their new cars. People proclaim “I’m a New Yorker,” or “Atlanta born and raised,” as if this makes them a member of a tribe. To not have things, or belong somewhere, is to be pitied, as if you have not done what is expected. And so I doubt my intuition that tells me that now is my time to shed both and go forth into the world.
Another part of me, that nagging voice of insecurity, says that the time to reinvent has long passed me by. That I’m too old, or that I should be content with what I have and where I am. My intuition says loudly and insistently to fuck that noise.
I hate the adage “age is nothing but a number.” It is misused, trotted out as a paragon to healthy living and/or a firm denial of the reality of aging. The reality is that we do age in spite of our best efforts. No one truly knows how long they are going to be able to do all of the things they’d like to do. At our last meeting, my dad’s financial advisor had to ask me “what the life expectancy is for people with chronic Lyme disease.” I don’t know, nor does anybody else seem to know. The CDC sticks with its’ assertion that even with “post-Lyme disease syndrome” one can expect to be fully well in less than a year. They are full of shit. But they’re not studying outcomes, either.
I want adventure before I’m forced to shrink my world due to the vagaries of aging. The truth is I can’t manage the energy to have it all anymore, especially with the ever-present specter of relapses. I’m not even sure I want it all. My hope is that this great purge clears the way for a larger life with less things and a clear sense of who I am.
I’m at an age where I’m thinking hard about what I want out of the backend of my life. Moving has only heightened the scrutiny, and the process is not one that lends itself to definitive answers. For some people that isn’t the case. They will stay where they are, basking in post-retirement bliss in a home they’ve paid off with kids and grandkids (and some with great-grandkids!)all living nearby. That’s supposed to be the dream, right? Not for all of us.
Dreams have a way of changing, or at least mine have. There was a time in my life where that sounded pretty good to me. I think it changed when Katie was twelve or thirteen. I’m not sure why, other than I was unhappily married with a daughter who adamantly insisted she was never going to have kids. At the time, I thought it was all a phase. Still, the seeds of change had been planted. As the years went on, I got divorced. Katie never changed from not wanting kids. I went to graduate school for writing (a big change in and of itself) and I got Lyme disease.
All future thought was on hold at my sickest. For six years, I thought of nothing beyond surviving through another year. Now that I am definitely “stable” (meaning a random pattern of wellness punctuated by relapses), I think about the future. What do I want to do with myself? I made a list:
- Torture my dad with my presence for his remaining years (who am I kidding? Dad an Keith Richards will be here long after I’m gone. They’ll dance on my grave.).
- Take care of myself. This includes having the time/energy to work out, cook, go to movies, have adventures with friends. It also includes lots of down time to relapse without feeling guilty.
- Travel. I want the time and money to go see friends, to travel to Paris, or Palm Springs, or wherever to watch tennis, and to go and see the world. I may even spend time living in one of the places part time.
- Have a home base in Denver with Katie.
- Write, write, write.
I suppose I’ll do all of this as long as I can and see where I end up. Ultimately, I’ll end up dead, of course, but that shouldn’t keep me from planning the future. If the present is any indication, I’ll be with Katie permanently at some point, subject to being “taken care of” by my daughter. As long as I don’t kick up too much of a fuss, I should be good there.
Some people might be shaking their heads at the things on my list, or the inclusion of Katie in my future. I’ve long given up on what people think of my relationship with Katie. I’ve pretty much given up on what people think of my choices in general. But the stuff with Katie goes waaaaay back. She established her “difficult child” bona fides by the age of three. I got plenty of advice over the years on how to deal with her, mostly from people who didn’t have a child like Katie. Don’t ask me how or why some of us end up with children who can’t or won’t conform to what an ideal child should be. A child who doesn’t care about pleasing you, or is simply different. Rather, ask me what to do about it, because unconventional children require unconventional answers. At her worst, I worried if she would want to live. At that point, making her to do dishes or go to school seemed pointless. My decision to let go of all those preconceived “shoulds” and “ought tos” ultimately proved to be right for us.
I still didn’t trust my intuition about other decisions, even though I knew deep in my bones that I was doing the right things with Katie. We joke about our entwined futures, but neither of us envision future plans without each other in some form or fashion. For us, the immediate future holds a flip: I’ll be the one coming and going and making the home will fall on her shoulders. My gut tells me this is exactly what I need—what we both need—but I’m still settling into this decision.
Really, it wasn’t until Lyme that I have learned that I DO know what is right for me and sometimes those around me, often before I’ve weighed all the pros and cons. Interesting, isn’t it, that it took serious illness that completely shook me to my core to realize that.
Knowing intuitively what is best for me and actually doing it are different things. Nothing about planning a future is easy, even when you’re older. The process of stripping my life down to the essentials induces something akin to pure panic sometimes. Letting go of anchors like possessions and places may leave me feeling unmoored, adrift in a new sea that has tides and waves I’m not ready for. However, it is better than being anchored by those same things, firmly grounded where I don’t want to be, held down by them instead of freed. It’s time to let go and trust that I am more than things, and that Katie is perfectly capable and more than ready to create a home that also has a place for me, just as I have done for her.
I’ve moved enough times that there is a rhythm to each move. There’s the relief of deciding to sell the home and move. Then the flurry of activity necessary to get the house ready for selling. I had a head start on this house, because before COVID I had considered selling and got rid of a bunch of stuff. That was a great help. After that, there is the wait for someone to buy.
That’s where the rhythm sped up. I’ve never sold a home in a market like this one. It sold in three days. We only had one bid but it was the right one. Our realtor wisely negotiated for a sixty day close and an additional sixty day leaseback. Because the corollary for a hot seller’s market is a tough buyer’s market.
I really like our realtor. I hav known him for seven or eight years through swimming. He is a good swimmer, and I either swam a few lanes over in a slower lane or was lifeguarding while he swam. Showing up at a pool at 5 am, sleep tousled and in a bathing suit to voluntarily swim a few miles tells me a lot about a person. That’s how I knew he was a realtor, and it’s also how I knew I could trust him to be reliable and trustworthy.
I think it takes a certain type of personality to be a great realtor. You’re not so much as selling something as guiding someone through one of the most purchases most of us ever make. You have to get to know what the person wants, yet make it clear what they can have. You have to explain strategies and pitfalls and advantages and all sorts of terms. My daughter is a virgin home buyer, so a large part of our realtor’s job is to explain the whole process to her. Our realtor is pathologically cheerful and patient, and has done all of the above, and more.
So we have a contract. I’m working on all the problems of making repairs, which is always a hassle and has its own peculiar rhythm. In fact, everything about a move is a “hurry up and wait” kind of motion. Some days are spent worrying if you’ve done the right thing and other days are seemingly consumed in a flash with phone calls, appointments, and paperwork. If I add watching the Olympics or writing into the mix, it makes getting anything else done extremely difficult.
What I’ve discovered about myself is that I can no longer juggle multiple things and push through a hectic day without paying the price. I lose my train of thought on one thing when I’m interrupted and can’t get back on track. I fall asleep at eight pm and sleep until six but I don’t feel rested. What level of stress can I handle now? I guess I won’t know until I’ve tested the limits, and this move is proving to be the perfect situation.
I miss the rush of having a jam-packed day of chaos and knowing that I dealt with all of it. Katie and I were talking about the time she went back to her second semester of school in January 2005 and discovered that Pikes Peak Community College had a Zookeeping degree program. This was what she had been looking for. She withdrew from Mesa State, I came and got her, we drove to Colorado Springs, enrolled her in the program, found an apartment and moved her all within three days. I doubt I could do that now.
When we moved to this house I got the house in Evergreen ready between December twentieth and January fifth. Katie and I packed over 85 boxes. I also found a new house all before I left for Bennington, VT on January thirteenth for my first term of graduate school. I was still negotiating the contract on the shuttle bus from Albany to Bennington. When I returned ten days later, I had seven days to finish packing, close on both houses, hire movers, and move in February second. I know I couldn’t do that now.
This move is dragging out, though, because of the craziness of the market. I have started thinking about packing, but it’s too soon. Besides, I am getting rid of at least half of my stuff, maybe more. But that depends on where we move and how much space I will have and how much space Katie will have. Because this will be primarily her space, not mine. I’ll be a co-owner but not here for the day-to-day living. I’ll be in Tucson for a while, then I’ll be all over the place, I hope. Eventually I hope to live somewhere outside of the US for six months each year and travel to see friends/tennis tournaments/for pleasure for weeks at a time. It’s funny, that doesn’t seem daunting at all. Because I will have total control of my travel times, recovery times, and when I come and go. I won’t have to clean the house, or do yard work, or deal with all the everyday things that sap my energy.
The end result of all the chaos of downsizing my world will be worth it, though. A much smaller property which means much less upkeep. I’ll have a co-owner I can trust who happens to be my daughter. She is thrilled to finally be a property owner. A smaller payment, which means more money for living. And lastly, a great shedding of things from a former life. Time will tell if that will be liberating.
I can always tell when I’m fighting an infection now. Babesia, a malaria-like protozoan parasite co-infection that hasn’t been in the picture for over two years (maybe more, I can’t keep all this shit straight) has returned. It’s probably due to an overload of stress and activity. I’m selling my house and down-sizing. I made the decision, traveled to Denver, prepared the house, and sold it all in three weeks. Fortunately, I have plenty of experience in this area. I’ve moved 39 times (give or take a few hasty moves in my college years) both as a child and as an adult. When I was married, I was the one who did all the legwork to prepare the house for selling and moving. As a child, I watched my mom do the same thing. She was highly organized and I don’t recall any trauma from a poorly thought out move. So I scrubbed, cleaned, packed some things up, and made the house look like someone would like to live there.
Houses are selling in less than a weekend in Denver at considerably more than the asking price. I don’t know when I’ll ever see a stronger seller’s market for houses in my price category again. It was no surprise when we had an offer Monday morning after the first weekend.
All that activity wore me down and that’s what babesia was waiting for. This is part of the reason I’m downsizing in the first place. The more stress I can eliminate from my life the more I can control relapses (I hope!). There was no sneaking up with this infection. It barreled in back in early June and it is raging right now, in spite of being on medication. And babesia has a unique set of symptoms: my eyes ache, itch, water, and blur, my teeth hurt deep in my jaws, I have a sharp headache constantly, I break out in sweats, my muscles ache, and my brain gets anxious and angry. I know, you’re thinking it sounds a lot like my other co-infection symptoms, and you’d be right. It’s the nature of the symptoms that is different. I could write pages on the differences, but I’d bore both myself and you. Let’s just say you know it when you feel it.
At any rate, the end result is a body in combat. I sleep a LOT, like ten or more hours a day. This Sunday I couldn’t stay up for the entire Wimbledon Men’s Championship match. Bear in mind, this was 10:30 am. I’d been up for four hours. In my defense, I detest Novak Djokovic, so not seeing him play isn’t exactly a hardship. It’s just frustrating to bow down to my body’s needs instead of doing what I want. I slept until a little after twelve and when I woke up, Djokovic had won. Yuck. I don’t like him. I find his whiny arrogance combined with his neediness that tennis fans adore him off-putting. I didn’t had the energy to do much else. It is one of the truths of chronic Lyme that it takes a tremendous amount of energy to fight off active infections, especially a parasitic one that feasts on red blood cells, like babesia.
The other sign my body is working overtime is my appetite. I am constantly hungry. Not junk food kind of hunger, but a deep urge to eat nourishing foods. I crave fruit, protein, vegetables, and fats. I give in to the cravings because I think my body knows what it needs when it’s laboring like this. Today it was leftover grits and fried catfish with some eggs on top for breakfast. Lunch was a big salad and sardines (go ahead haters, sardines are delish). I had popcorn for a snack and dinner was a baked sweet potato and steak. I’m still hungry. But I’m full. It’s annoying. What isn’t annoying is that I don’t gain a pound while this is happening.
So, I’m sleeping and eating or thinking about both most of the time right now. It’s a strange activity, fighting infections. I don’t necessarily feel ‘sick’. I feel like a bear must feel at the onset of hibernation. Grumpy and eating and eating for the long winter and becoming increasingly sleepy. If I don’t have anything else to do it’s not bad. I basically plan meals, cook, and lounge around waiting for sleep to overtake me. But I don’t get too much else done. I can only hope that allowing my body the rest and nourishment that it needs will get me back on track soon, because I have a lot to do in the next few month. I have to find another place to live, pack, and get rid of a bunch of stuff. I have to line up movers and a service to sell all the things we don’t want. I’ll have to sign a bazillion pieces of paper in order to sell and buy a place. I can’t say the process will be enjoyable. I can say moving is one of my life skills that has proven to be incredibly handy. I’ll do what I always do: forge ahead and remind myself daily that when it is over, I’ll be in a better place, physically, mentally, and financially.
I’m in the “I need to give myself a good talking to” phase of recovering from this latest relapse. It’s the stage where I’m returning to normal and I always do that better physically than mentally. Unless you have experienced unpredictable lapses in your health, understanding the amount of mental strength it takes to get your head straight once again is hard to fathom. It’s real though, and to deny your brain the time to heal, too, is just plain silly.
That doesn’t alleviate the frustration of reclaiming your brain. The mental effects of Lyme are perhaps the slipperiest symptom of all. Quantifying mental distresses like anxiety, depression, OCD, and depersonalization can be tricky, especially if they are directly tied into an unpredictable, yet reliable pattern of illness, like Lyme. I’m not sure medication would help me, for I function quite well (translation: I hole up and hide from the world) even when my brain has walked off the job for a while. At any rate, I’m weepy and angry and sad and anxious and scattered and blank when I’m sick and then I get better. It’s that in-between phase that I inhabit right now, the sputtering back to life of the ol’ bean.
The first thing to come back is the need to ‘put things back in order’. I think I’m doing great and keeping up with everything and then I discover all sorts of stupid shit that I’ve done. Once that’s sorted out, I have to see what emails/business/friends I’ve neglected or forgotten and reach out. Then I must clean and reorganize. This time it was my closet, moving around my “winter” clothes for my “summer” clothes (quotes intended, because in Tucson, they’re the same!). So. My life is back in order and it’s time to start thinking and writing again. I’ve tried to write while relapsing, and I can assure you that it is an exercise in foolishness, the writing wooden and the thoughts going nowhere. I still do it, if for nothing else but the entertainment of reading it later.
There are a few things I’ve discovered about my process, the main one is every single fucking time I think my brain is not going to come back. I grow impatient and start scolding myself. Thus the “give myself a good talking to” phase. It that an old-fashioned phrase? I’m sure I heard my mother say it and read it in books. I started using it once I left home, and had no one to do it for me. The voice is usually my mother’s, her pragmatic, tough view of getting on with it has served me well over the years. Not with Lyme, though, because the act of getting on with it is more complicated than buckling down and working harder. My brain is still warped while I’m doing said talking to and attempting to buckle down. Like old furniture, my brain takes time to warp, and more time to repair, the wood coaxed back to its former shape with pressure, clamps and glue. There is no rushing the process. Telling myself to get going again is my version of clamps and glue, applied liberally to quite literally straighten myself out.
Sometimes I wish there was a way to see what is happening inside my brain matter during relapse, recovery and periods of wellness. I imagine my brain swollen during relapses, the neural pathways squeezed so tightly they only partially function, and when they do, they misfire. During recovery, I see the pathways opening randomly at different rates, struggling to reestablish the known and familiar. It’s the wellness phase that I’m most curious about. Have some of those pathways been squeezed too hard by inflammation and been destroyed forever? On the other hand, I try not to think about this too deeply, because I’m not comfortable with the idea that every relapse invites a bit of destruction to what makes me myself.
I have a lot of freaky thoughts while my brain reawakens. I’m sure this is completely expected and considered normal by neurologists who study brain traumas, but man, is it weird. The good thing is that they are fleeting and not so weird that I worry about becoming permanently mentally ill. In fact, there is something exhilarating in knowing that all these strange manifestations are caused by an identifiable source. Katie likes to remind me of this frequently when I tell her I’m not thinking clearly.
“I’m not thinking right now and I can’t figure out why,” I say.
“Yes you do,” she says. “It’s your stupid fucking Lyme.”
Katie is the angel/devil on each shoulder and I am lucky to have such an uncensored voice. She doesn’t scold or sugar coat. She tells it like it is to me, as she has done her whole life, whether I want to hear it or like what I’m hearing. She also tells me to relax, I say this every time and every time I get better. This is far less guilt inducing than my mother’s voice. From now on Katie’s voice is the one I am going to strive to channel whenever I feel this urge to give myself a good talking to.
I don’t normally post links, but this very short article on the chronic-symptoms of those of us who continue to suffer from Lyme long after we’re “supposed” to is very good at explaining the experience in our society and healthcare system.
I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.
As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.
Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.
Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?
Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?
I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?
I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.
Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine. All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.
When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.
But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.
I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.
I try mightily not to be judgmental. In the effort to put myself in someone else’s shoes, I fail most miserably with myself. Some of the ridiculous judgements I make (only with myself): should you be doing this? Why aren’t you doing that? Do you really feel that bad? You’re just being [lazy, a drama queen, too soft, too hard, not serious enough, too serious] and more, every permutation a judgment on me.
It’s hard not to do this when you’re always navigating a chronic illness. Chronic illnesses like Lyme are floaty ephemeral things, randomly disrupting your life in dozens of ways. That makes it less real and concrete, unlike, say, arthritis, or diabetes, or an illness like cancer. In these illnesses, the causes of those diseases are measurable by tests and the core symptoms never shape-shift and morph on a whim.
And Lyme, along with its co-infections, may be chronic, but it is mostly—and I fucking hate this word— manageable. And so I judge. I look at people I know who have far deadlier and scarier challenges than Lyme and all of a sudden my ability to see things as they are for me vanishes.
When I get in a judgmental funk, I often second-guess what other people are thinking. ‘Well, she was able to [swim, hike, write, clean, cook, shop] so she can’t feel that bad,’ ‘She was fine yesterday. How can she be sick today?’ Maybe they don’t think any of these things, but I think they do. I tell my self to stop it, but I don’t listen when I’m in this kind of mood. Like an overtired toddler, once I’m wound up, I can’t unwind.
I tend to second-guess myself, too. At least twice a week for the past six years, I wonder if I really have Lyme. I wonder if I am relapsing at all. You’ve felt pretty good for the past <day, week, month> my brains says. You’re probably not sick at all anymore, just goldbricking. Cool etymology, goldbricking. Look it up.
That’s when I catalog my current symptoms, the ones that make me doubt everything. Yet, they are the realest part of all. They may not operate on a schedule, but an aching liver, shooting pains in my teeth, a neck ache, sore feet, and muscle pains are concrete, solid things that, as much as I deny them, cannot be denied. Stoicism does not equal wellness. The other symptoms, like fatigue, or when I forget dad’s phone number and address, or what day it is, are much easier to judge as non-worthy symptoms of illness.
And so I scrutinize, picking at myself relentlessly. It starts from the moment I wake up and assess how I’m feeling. How bad is that headache I ask myself. Bad enough to not walk? You have to walk. I suppose if I am being generous with myself, I’d say that this state actually gets me to do things, regardless of how I’m feeling. I almost always begin the day charging hard, getting up early and getting as much done as I can. That’s because it could all grind to a halt at some point in the day. I’m okay with that if I’ve managed to accomplish a few things before the crash.
This has been workable during COVID. We all seem to have had a collective fever dream where ordinary life has hung suspended from the pandemic. Being judgmental took a vacation as we struggled to deal with isolation and fear.
Now that most people’s lives are slowly returning to ‘normal’, I’m certain that the critical cacophony in my head will increase in direct proportion to my perception that everyone else is moving on. And I will respond with the urge that I have to work harder and do more, an insane reaction when I think about it. But that’s just it, isn’t it? My brain becoming mushy with a relapse, my body betraying me once again. I’ll obsess about lottery tickets, fight the feeling that I am running out of time (for what, I don’t know), and worry that I need to write and do things to prove I am worthy, even while I am sick.
My therapist tells me things like, ‘be kind to yourself’, and ‘give yourself some credit’. Easier said than done. I don’t know why I’m harder on myself than on anyone else. If I knew me, I’d think I was handling a shitty hand pretty damn well. Maybe I’m harder on me because I do know me: my foibles, weaknesses, and bad habits. Lyme has a way of exacerbating the bad parts of me and obscuring the good parts. I need to keep working on things that matter to me because I want to, not because I’m struggling to define my self-worth outside of being a chronically ill person.
I have a feeling this is going to take some time. I’ll probably stomp around on my walks muttering to myself, trying to figure out how to accept that who I am is not defined by my illness, nor is it defined by how hard I work to show that I am not ill. It’s a stupid conundrum that is self-created. It will become one of those opportunities for growth that I have come to loathe.
I love the etymology of words and phrases. Yesterday, I wanted to say “on an even keel” in Spanish and struggled to explain what that meant. Two of the students are men in their twenties, and the instructor is a Puerto Rican woman in her twenties. Idioms are lost on younger people now (not all, I’m not trying to start a generation war). Many idioms endured for centuries, but the context has been lost. Not so for “on an even keel.” Boats still have keels, and sailors like them to stay even.
These days my goal is to stay on an even keel. That means different things to different people. When I was young, I didn’t know my mom’s devotion to order and structure kept our house on calm seas until I was older. All I knew was that when I left home at 17, my life was most definitely not on an even keel for a long time, both physically and mentally. It was difficult for me to figure out what I needed to have that sense of balance and stability.
College was one big choppy chaos. I moved often, had no firm schedule, and didn’t care. However, as school came to a close, I looked for a way out of that chaos, and chose marriage. I don’t know why I didn’t have the cojones to forge out on my own, but I didn’t, not back then. I think I wanted to be rescued, or share the burden, or some such nonsense. Of course, this did nothing but add more chaos. I don’t think I felt on an even keel until Katie was born. A newborn baby is hardly an even keel, but for me it was the first true source of stability in my soul.
Over the next years, I discovered how to create my own calm seas, both for Katie and myself. I learned that for me, making a home went a long way towards alleviating chaos and stress. Inside, though, I was still not on an even keel. I was constantly fiddling about in a vain attempt to make someone else happy. It wasn’t until I divorced that I realized I’d been off course for years and years and years.
Even after I got Lyme and was terribly ill, I felt more at peace than I had in the last thirty-five years. I think many times people mistake (or hope) that having things, or having a busy, scheduled life is the same as being on an even keel inside. They usually aren’t, as I suspect many people learned after this long year of COVID. Inner turmoil and unhappiness will find a way to burst forth, and if there is no deeper sense of balance and happiness, things can go south in an instant. BTW, “go south” is an interesting saying, with no clear source. Could be from Native American’s euphemism that to “go south” is to die, or from the notion that if you committed a crime in the 1800s, you could escape the consequences by “going south” and crossing the border into Mexico.
For me, Lyme gave me stability. I had no other choice, but it’s true. I had to find a balance to give myself any kind of life. A funny thing about a chronic illness: any pretense is stripped away, and if you don’t like what you see, you’ll never be on an even keel. I’ve worked extremely hard to figure out what makes me happy, what I can live with, and what I can change.
Your balance might look entirely different. I’ve known people who thrive on pressure and constant change. I’ve known people who have everything going for them and are never in balance. Being on an even keel doesn’t mean everything in your life is going well. It means you’ve gotten your boat in tiptop shape, you’ve learned how to navigate rough water, and you manage to keep your boat relatively stable, at least until you it calm waters once again.
Now that I have that straight in my mind, I can weather any storm. I can even find contentment where others would see nothing but a big old storm bearing down on them, with no chance of not capsizing.
Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.
At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull. I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.
After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.
At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.
I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.
The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.
I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.
Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.
Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).
My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.