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.
A new chapter, turning over a new leaf, rising from the ashes, rebirth, starting over; the sheer number of maxims boggles the mind. The facts are usually the same. Person has a setback, person begins life with a new purpose. I might argue this is one of the most basic facts of life. It smacks of redemption, courage and strength. There are many levels of this type of renewal. From “tomorrow I’m going to start to get to work on time” to “I’m going to recover from cancer and live my life differently”, we all understand the concept, just as we realize the difference in magnitude.
For me, my own personal rebirth begins with “the good news is I’m nearly well from Lyme disease” and “the bad news is I’m nearly well from Lyme disease.” How could getting well be bad news? Let’s look at the word ‘nearly’. Being nearly well means I can’t quite begin a new life, but I have to try anyway. ‘Nearly’ means I will fail often because I will try to do either too much or not enough. ‘Nearly’ means still picking and choosing where to put my energy, and getting it all wrong. ‘Nearly’ means napping almost every day, not because I want to, but because I have to. ‘Nearly’ means doing work that is not challenging just in case I have bad days where my brain isn’t functioning.
There is no other solution than to carry on. I make modest daily goals in hopes that one day, I will be well. On good days, I get everything accomplished and feel like perhaps I’m getting my life back. On bad days, I have to decide what to let go and find a way to be happy about it.
I’m still trying to figure out how to explain that I’m mostly well. There are days when I think, I’ve got this. Where I make a new Plan A. Those are the days I forget I have Lyme (Had? Another thing about ‘nearly’—is it ‘have Lyme’, or ‘had Lyme?’). Other days, I am overwhelmed to the point of giving up. That’s when I think about selling the house, moving into an RV, and disappearing.
On one of those good stretches, I decided to redesign my web page. After all, I am no longer ‘finding joy while living with Lyme’. Surprisingly, figuring out a new tagline and a picture to represent ‘life after Lyme’ was harder than the nuts and bolts of redesign, or writing this post. Because, who the fuck am I now? I was already changing when I got sick. I should view Lyme as a delay, but that wouldn’t be correct. Lyme changed me. It changed my priorities and what I want for the rest of my life.
It took a discussion with Katie to figure out what best represented my life. The tick isn’t gone. The tick will never be gone. It is crystallized forever inside me, slowly fracturing into a million pieces as I struggle to become whole again. After we figured that part out, the tagline became easy. I don’t think bumbling is too harsh a word. I am bumbling, because I am still changing. Maybe that’s what ‘nearly’ is.
I have two family trees. All adoptees do. The first is the family whose name I share, who I grew up with, my family. The other tree is newer, yet with older roots. It is my DNA tree. I had done a DNA test over fifteen years ago, but the parameters were much broader back then. This time, the motivation was from Dad. He had his DNA tested and showed me the results. I asked Katie if she wanted to get tested because they were running a two-for-one special. To my surprise, she really wanted to see what her genetic background was.
The irony of her enthusiasm is that I searched for my other family tree because of Katie. When she was in high school, she had a rough time. Was there some clue in my birth family that might help me help her? I must have had an unconscious desire to know myself, but I sure didn’t know that then. I just wanted to find out my genetic background, I told myself.
I hope Dad understands this journey is completely separate from my relationship with him. I am always, and forever, Bob’s daughter. Shirley’s daughter. Mike’s sister. Ginger’s cousin. Katie’s Mom. Me. I never expected that this quest begun for Katie would awaken a desire to know my other family tree.
As an adoptee, not knowing your DNA family is nothing new. In fact, it was probably more common to have been orphaned or abandoned throughout history than now. I can tell you that no matter how wonderful your family is, or how good a fit (mine were/is, on both accounts), being an adoptee is incredibly lonely. There is no one who looks like you. There is always the stark words ‘adopted’ written across your medical history. No one compares you to an aunt, or brothers and sisters, or mom and dad. You are an island unto yourself. I coped by keeping a little part of me protected. I wasn’t aware that I did this until recently, and I wasn’t too happy to see that.
I already knew who my birth parents were when I ordered the tests. My journey started back in August of 2007. Apparently I had to mull over my options because this was three years after Katie had graduated from high school. For $65 I ordered my de-identified adoption paperwork from the Methodist Mission Home in San Antonio. The heavily inked out lines are reminiscent of secret government files.
There have been a lot of emotionally jolting firsts for me since then. The afternoon I received a packet from Methodist Mission Home, I pored over the papers. My birth mother wanted to be a journalist, her family owned a restaurant; she was one of eleven kids. My birth father was a musician and a journalism teacher. Huh. Imagine that. September 5th, 2007, two months after listing my information on every adoption reunion site I could find, an “adoption angel” who had seen my request sent me my birth mother’s name and a link to my original birth certificate (my birth mother had named me “Suzie”. I’ll give her a pass because she was 18 and it was the late 50s). After months of sleuthing, I saw a picture of my birth mother. I remember I sat there, stunned, staring at the young girl who looked a lot like me. Some five years later, I finally, finally, put all the pieces of the puzzle together and found out who my birth father was. His picture confirmed everything. I look like him, too. At long last, I had images of the people who created me.
I now have a dual-track family narrative. The one that is, that I’ve known my whole life, and one that I’m struggling to form into a new narrative. They will never meld. I have no desire to spring myself, uninvited, into my birth mother’s life. I don’t care to hear her story, the mea culpas and rationalizations behind her choices. It is enough—more than enough—to know who I came from, to see their pictures and names, and to see what I am made of.
My mind, body and spirit have grown flabby from Lyme. I had good news from my doctor this week. I am, metaphorically, sprinting down the backstretch. Only I’m not sprinting, I’m lackadaisically strolling, the one pace Lyme allowed. This is supposed to be good news, and it is. I haven’t figured out what it means for me yet. I was warned that this isn’t an immediate return to health. My body is more than flabby, it’s a toxic waste dump. It’s worn down and tired from three years of illness. When I was out of town with Dad the last few weeks, I got compliments on how good I looked. What a cruel paradox. I’ve never looked healthier or been sicker.
I joked with my friends in Dad’s retirement village in Tucson (yes, I’ve spent so much time there that I have my own friends there) that I live the lifestyle of a five-year-old. I also joked (but not really) that I’ve gotten a preview of the ravages that age brings. A preview, not the big show. I hope I make it to the big show. I’ll at least know how important taking care of yourself is.
That was one of the best parts of my doctor’s appointment. I have passed into that strange relationship doctors and patients have when they are brought together through serious illness. Not-quite-friends, he knows too many intimate details of my body and life to be merely an acquaintance. I see his wife, also, and I was delighted to hear from each of them that because I work so hard on my health (italics mine, because I am pretty fucking proud of myself) they think I’m going to make a full return to health. Yassss!
One of the secrets to coping with a long, drawn-out illness is surrendering to the illness. Not surrounding as in giving up, but giving in. It is, however, quite possible that I have gotten too comfortable with this skill. It’s ironic that the coping mechanisms I used to get through the last three years might be liabilities on the road to wellness. So what do I do now?
I consider myself an athlete. I have never gone more than eight weeks without working out. Whether it’s tennis, swimming, pickle ball, weight-lifting, Zumba, Jazzercise, running, hiking, or yoga, I am always doing something. I have continued this as much as possible during Lyme; in periods of relative health I swam, played pickle ball, walked and lifted weights. Each time was hard. I’ve had no stamina for two years. Getting back into shape is always a pain in the ass. I’ve done it after each of my surgeries and I will do it again now. Five minutes today, ten minutes next week. One day I’ll wake up and be working out at my normal pace.
Maybe that’s what I need to do in other areas of my life. I’ve never lost my mind before, but I’ve been working crosswords, playing Words with Friends, writing, reading again—getting my mind back into shape. Now I have to turn that mind-play into mind-work. I’ve shied away from mental work because I couldn’t handle the inevitable failure trying to perform a challenging job while I had Lyme. Now that’s changed. First step will be to devote an hour or two each day to a new, online writing job. It will seem unbearably difficult to me at first, like that first time I swim after a long layoff. I feel like a beached whale the first three or four times, my limbs flailing through the water and lungs gasping for air. Then there is a day where I slice through the water, pushing the last fifty of a two hundred without dying. I will gradually work more hours. One day I’ll wake up and realize I’m doing it easily and happily.
It’s the time between now and one day that is daunting. I’m sure I’ll push too hard, or beat myself up for not pushing hard enough. I’ll cry and get angry and wish things were different. I’ll bitch and moan to anyone who cares to listen (anyone? anyone?) how hard it is. There will be days where I feel strong and sharp and in control. There will be many more days where I want to crawl under the covers. I don’t ever want to be this sick again. Never, ever, ever.
My spirit is the weak corner of this triangle. This is one of the few times I wish I had faith in something. How easy it would be to fob it off on “god”. That’s not for me, though, I’ll have to figure out how to get my joie de vivre back on my own. It may surprise me, what makes me happy and replenishes me. I don’t have a clue at this point. Or maybe I do, but like my mind and body, my spirit has also atrophied, the energy Lyme took far exceeding my resources. What if my spirit doesn’t come back? I’m scared I don’t have what it takes to make it down the final stretch. I know, I’ve made it this far, blah, blah. If I can’t figure out how to rejuvenate my spirit, all of this will feel insurmountable.
I look at the people in Dad’s community. Some of them face what seems to me to be unimaginable hardship. They all cope with their changes differently, that’s expected, but they all share an unquenchable spirit, a thirst for life. That’s what I want. I just want it to be easier to get. Not only that, I find I really want to hang around for awhile. The world is an endlessly interesting place to be. I’ll find out what my spirit is made of, and what revives it. I’ll use that knowledge when I graduate to the big show and I’ll stay thirsty for as long as I’m able.
This blog was originally about losing my mind and being sad when I got well enough to realize I lost my mind for a good long while. There is little doubt (at least to me) that my brain is returning. I kept veering off the subject of crazy, though. and into grief. I had no idea that I was and am grieving right now. Grieving is different than depression. Grieving the loss of something partially returned is different than mourning the loss of a loved one. Nonetheless, grieving overtly implies loss, and only now can I see what I’ve lost in the last three years. Only now that I am returning to health that I have the energy for such an indulgence. Perhaps ‘indulgence’ not exactly right—it seems unavoidable—but why can’t I use my returning energy for something useful?
I haven’t had a huge amount of loss in my life. Three of my grandparents died before I was thirteen. My Nanny died when Katie was young. I mourned, but I didn’t know profound loss until my mom died. That period of bereavement morphed into an outpouring of grief for all the hurts in my life. What purpose does this serve for humans? It’s never fun, always difficult, and the end result is, what? A blank exhaustion, a feeling that there are simply no more tears to be shed. That particular part of the journey is different for everybody.
What I really want to know was why I spend so much energy on grief. There are four stages of ‘normal’ grieving: Numbness/disbelief, Separation/distress, Depression-mourning (are the two inseparable?), and Recovery. There is something called ‘complicated grief’ (wtf? is that different from ‘simple grief?) and ‘infinite loss’. I hate having my journey so neatly compartmentalized, so pedestrian. On the other hand, knowing this is normal is comforting. I found myself feeling much better just reading about ‘Perpetual complicated grief’, aka, constant sorrow.
I am not a woman of constant sorrow. There are times when an inertia settles over everything, and that’s unpleasant. The grief is like a low-grade fever, not incapacitating but definitely a factor in my everyday life. Grief from chronic illness is different from acute or terminal illness. Those illnesses have a definite end, one either gets well or one dies. Chronic illness is a series of losses, unending, and multiple. These are known as infinite losses. Great. Constant sorrow over infinite losses. Sounds Sisyphean, and it is.
The most difficult aspect of chronic illness and grief is girding up for the next round. As I write this, it (finally, DUH!)occurs to me this is why I am continually battling exhaustion. This is why I nap daily and sleep eight hours a night. Maybe grief serves as a reminder to my body: this isn’t over, you need to rest, don’t get too excited, now. As if I need a reminder.
Sometimes I wonder when this (Lyme and grieving) will be all over. More often, though, I remind myself that the weight of my illness and grief are the only things I get to determine. So I bumble on, wrestling with keeping both loads as weightless as I can, while still trying to live. I need to be smacked in the face to recognize what is often right in front of me. Putting a name on what I am experiencing is what I need to recalibrate. Which brings me to comfort. Anyone who has gone through this process understands the need for comfort. Respite might be the better term, but comfort through the process is elemental.
I have time-tested activities that provide comfort to me. Some are mundane, like cooking and cleaning. The results of both are deeply soothing because they are concrete reminders of my usefulness and skills. Movies. Cocooning in a dark theater and entering another world, no matter how grim, is essential. Music. Because singing loudly and badly with your favorite songs never gets old. Walking the dogs. No explanation needed. Playing pickle ball. I love the game and the people. I don’t want to brag, but I’m popular with the over-65 men. Writing. For some reason I love spilling my guts to everyone. After the first time, it gets easier. Lifeguarding. Any work is better than not working. Besides, I like lifeguarding. I think deep thoughts staring at the pool.
Sometimes it’s hard to recognize whether I’m grieving or relapsing. A friend who has battled a chronic illness for years told me that when he’s having a good day, for whatever reason, he lets himself enjoy it. Does whatever he wants and doesn’t feel guilt AT ALL. I tell myself to do that, but it isn’t easy. I have trouble gauging how much I can handle, and tend to beat myself up when I do too much. Maybe when I get to the recovery stage I can relax and enjoy life fully.
Where does all this grieving and ruminating leave me? A little bit stuck, I guess. I am going to have to trust in myself (always dicey) and have faith that one day grieving and healing won’t be so hard. Meanwhile, I keep busy cleaning, resting, lifeguarding, writing, vegetating, playing pickle ball, walking the dogs, working from home, and above all, trying to get to that zen space of enjoying myself guilt free.
ps I started this blog before Las Vegas. The sense of grief over events in the world today is a daily battle. Comforting and being kind to yourself is more essential than ever.
I like vacations. I especially like unexpected vacations, like the one I was just on. I say “unexpected”, but I mean “forgot about”. This happens to me more than you’d think. To many people, being sick IS vacation. There is the luxury of staying home and taking care of yourself. I don’t know what this says about our society, that a “staycation” can be as desirable as a vacation, but I do know that being housebound because of illness is no vacation.
I don’t quite remember how this vacation came together, yet here I was, two days before departure, bitching to Katie about leaving. I am one of those people who feel compelled to leave a clean house and yard. I know, no surprise there. It’s more work up front, but always worth it on the return side. So I was running around the house, cleaning and weeding and watering and organizing, and not packing a single thing. Was this vacation worth it? Should I be leaving at all? What was I thinking back in March? Oh yeah, I had planned on being well.
The journey itself is enjoyable to me. Something about solo travel makes me feel competent and free. The whole flavor of travel has changed for the better since becoming single. My ex was an impatient, tense traveler. I’m chill to the point of sending my itinerary to my friends because I can never quite remember the particular details of dates and times (see first paragraph—it happens a LOT). Still, I get myself from point A to point B with little fuss and trouble.
Some people, myself included, struggle with the idea that sickness deserves a vacation. The answer is emphatically yes. Serious illness gives few breaks, and a respite punctuated with illness is better than no respite at all. Or, as my friend Paul has said, “I can be sick in Paradise or sick at home. I choose Paradise”. I knew that many people would think going on vacation would mean I was better. I am better, but I am not well. I knew I would have some bad days, perhaps during, but definitely afterward due to the stress of travel and fun. What I didn’t know was how worth it going on vacation was.
Something else went on vacation, too. My medication schedule. I can do that with Lyme. Each bug, borrelia, babesia, and bartonella, has intense defense mechanisms (biofilms, cysts, and hiding in tissues where there is no blood flow, like eyeballs and joints and the brain), so the protocol is always changing. Most doctors pulse medications in monthly bursts, to constantly hit them with something different. That means I can, theoretically, miss a week or so of most medicines and not mess up my treatment.
Almost all Lyme literate doctors use both pharmaceuticals and herbs to treat Lyme. The pills are easy. I can take up to seven pills in one gulp, if they’re not huge. The herbs are different. I mix all the herbs in a glass, 15 drops at a time. Then I put in maybe an ounce of water and drink it. Katie watched this once and said, “That smells like some foul shit.” A note about some of the stuff I take: it is some foul shit. I don’t think about how it tastes. I just chug it. I’m still trying to figure out what in my life made me such a champion medicine taker and I’ve got nothing.
I always feel a little bit naughty that first day I don’t take my meds. The freedom from that tedium is immense, I can’t believe how easy it is to NOT take medicine. I have them with me, too tethered to the thought of needing them to leave them at home. Sometime in the afternoon of day two, as on most vacations, something loosens inside of me. I don’t care what’s going on in the world. I quit checking my phone and my computer lies idle. The medicine migrated to the bottom of my suitcase.
Isn’t that the whole purpose of vacation? A rejuvenation of mind, body and spirit? Too often we pursue vacations with a grim purpose to pack as much activity and fun into them as possible, leaving exhaustion and frustration in the wake. I much prefer my friends’ pace: puzzles, hammocks, a vague daily plan which may or may not involve an actual activity, games at night, and the freedom to do whatever you’d like.
I got myself home with little fuss, and a small bonus: dinner with another friend. I milked a few more hours of vacation, and returned home to Katie and the dogs. That might be the best part of vacations for me—the moment I walk in the door of my own home. The smell is deeply familiar and comforting, as my home smells like both my childhood and adulthood. The dogs greet me as if I’ve been gone forever. Katie bounds up the stairs and gives me a hug. “I missed you!” I’ll start retaking my medicine tomorrow. Tonight I will unpack before I let out that final exhale of vacation, before thoughts of tomorrow, with schedules and chores, creep in.
Yes, my dad is alive and kicking. I want to take the opportunity to embarrass him while I can. It’s not often we get our own personal heroes, but I have one, a fact that has become even more emphatically clear during my struggle with Lyme. Dad and I are extraordinarily close, our relationship uncomplicated, unlike the relationship I had with Mom. Maybe that’s the nature of fathers and daughters, but more likely it’s because our personalities simply mesh. His 89th birthday is next month. He hates his birthday. His office once threw him an unbirthday party because he assiduously and purposefully withheld the date for years. He is going to kill me for writing this. I know it. That’s okay, Dad. You know you love me.
I was adopted on the sixth day of my life. I didn’t know until this year that mom and dad adopted me because I was a “hard to place” child, because I am half-Hispanic. This fact rattled me a bit. Hard to place? Moi? That’s because Mom never shared this tidbit with me, and I don’t think it ever occurred to Dad to even mention it, until I asked.
Dad was raised in a world of women. His dad traveled for work, and eventually divorced his mom when Dad was twelve. Dad credits his decidedly egalitarian views towards women (an anomaly for his generation) to this upbringing. I realized he was different from a lot of other dads early on. Other kids weren’t canoeing with their fathers. Other kids weren’t playing ping-pong, tennis, or just talking to their fathers. I rarely heard of friends’ fathers vacuuming, cleaning windows, or washing dishes. He did all these things and more without complaint. I complained enough for the whole family. Mom went back to work full-time when I was in the sixth grade with his blessing (I hesitate to state it that way, because he fully supported her choices). In his mid-fifties, he moved to Memphis for her job and commuted to Denver two weeks every month because she had interrupted her career to move for his. He took care of Mom for the last ten years of her life, putting aside nearly everything for her.
One of the things I love most about Dad is his absolute, unwavering unconditional love for those fortunate to be in his orbit. He wants nothing but good things and happiness for you. This used to intimidate and frighten me: could I live up to such a fierce love? Now I see that I do the same to Katie. There are worse things in life to know you are someone’s sun, moon and stars. He spoiled me a bit, but again, there are worse things. He has supported me unequivocally throughout grad school (he used the proceeds from Mom’s cello and bow to pay for it) and through my ordeal with Lyme disease. I do the same for Katie, and we do what we can for him. It’s a happy circle of unconditional love that I wish everyone could experience.
Dad was not a pushover, however. I tested plenty of boundaries. My brothers didn’t know what boundaries were. Dad has questioned his (and Mom’s—they were a team, 100%) choices on how he raised us. This is both endearing and annoying, because there were maybe four or five times, tops, where the punishment was unwarranted. He likes to remember differently, but some of his punishments were downright genius. One of my favorite stories (and his least, probably because it reflects poorly on me) is the time I was caught completely bombed on Quaaludes (thank goodness the guys’ parents came home, because we were literally on our knees howling with laughter because we couldn’t get the car keys in the door to unlock the car). Dad grounded me for six months. He said we were going to be spending a LOT of time together and signed me up for tennis lessons with Kingwood’s new tennis pro, Jim Rombeau. To this day Dad and I share an abiding love for tennis. This didn’t solve all of my misbehaving, but it brought us much closer together.
There was a time when it used to irk me that old boyfriends (really, all of my friends) always asked how Dad was doing, to the point where I suspected they liked him more than me. Now I see it for what it is, a huge compliment to him. He’s nonjudgemental and listens, no matter your sex or age. I remember discussions about news, books and life as early as nine or ten. When I was twelve, or maybe thirteen, I announced I was atheist. He asked me how I came to that conclusion and we began a discussion on belief and faith that continues to this day.
Dad won a lawsuit against an oil company known for stiffing independent exploration geologists who’d done work for them, largely because the jury found him an impeccably honest and moral witness. He once told me he’d rather see an honest F than a cheater’s A. He embarrassed me and my cousin Ginger at the movie theater by doing a spot-on imitation of Tevye singing “If I were a Rich Man” during intermission. He got thrown into the pool regularly because he was that dad, a good sport who liked to have fun. He likes to solve the world’s problems over a few drinks. He makes his granddaughter feel like she’s the center of his universe.
Whew. All these compliments! Lest you think he’s perfect, he can’t dance. His singing is abysmal. His ‘cooking’ is utilitarian at best, popcorn and wine at worst. He hates to wait. He can barely sit through a movie. He hates most holidays. He never feels like he gives good gifts (this is nonsense, he gives the BEST gifts). He gets mad when Katie and I fuss over him. Too bad, Dad. We will fuss over you forever. Many friends who know him joke about letting him adopt them, too. He picked me, a hard-to-place monkey-faced baby. I’m not nearly as nice as he is, so too bad, he’s mine, and I’m not sharing.
What’s the difference between being retired and being useless? Staying busy or taking up space? Is there a magical moment where one moves from one column to the next? I’ve been pondering these questions as I cobble together ways to feel useful and productive with the erratic uncertainty of Lyme. I am terrified of being seen as useless.
There is a lot of talk these days about “personal responsibility” and not wanting to pay for “able-bodied people who can work.” This presents me with a dilemma. Do I make myself sicker to assuage the scarlet letter of being useless? Or do I take care of myself and continue to chip away at my inheritance? I’m not costing anyone but my future self a damn dime. I don’t have insurance. I pay cash for all my doctor appointments and medications ($15k and counting). I am on no assistance. So why do I continue to beat myself up about this?
I do work. I lifeguard. It is low-key (except the .1% of the time when you’re faced with a medical emergency) and I can make my own schedule. I am an Airbnb host. Neither of these jobs pays the rent. They give me structure that I can manage and something to do for money. Cleaning, shopping, gardening, writing, socializing and working out take up the rest of my time, in that order. Some days I have to drop some or all of these things. Big deal. I deeply resent the idea that you have to ‘earn’ the right to be useless in America. First of all, being useless in America means not getting paid. Every stay-at-home parent knows what this is like. We don’t value certain jobs as much as others. We vilify the working poor. We especially abhor people who don’t carry their weight.
Second of all, things happen. Illness, bad luck, poor choices, economic downturns, anything, really. Most of us are closer to the edge than we’d like to admit. Most of us wouldn’t last long if we didn’t have investments, savings, families, or access to a social safety net. Without my dad and Katie, and friends, I’d give myself two years, tops, after contracting Lyme disease. That makes me lucky, not worthy.
We all know people who, for whatever reason, have more trouble with this than others. I am far less judgmental than ever (not that I was terribly judgmental to begin with) now that I have Lyme. People post memes that say things like “You never know what someone is going through. Be kind. Always” on Facebook all the time. I know instantly that this person is saying, in code, that they are going through some kind of crisis. It’s important to realize that things happen to good people, bad people, and everyone in between. Sometimes it’s not their fault, and sometimes you know damn well it is. Then what?
It’s an awfully big job to decide who is worthy of your empathy and who isn’t. I know some people see me out and about and wonder to themselves ‘how sick can she be’, and I want to explain how Lyme works. When I turn 65 and still have Lyme I can consider myself ‘retired’ and not ‘sick’. Or can I? Maybe I can be sick and retired. Will I be worthy of idleness then? What if I get well and want to work. What if no one hires me because I’m too old and have been sick?
I’m not alone with these thoughts and fears. I am exceedingly lucky to not have to ask other questions, like ‘will I run out of money’ and ‘do I have somewhere to live’. I am torn over solutions. On one hand, I don’t want insurance companies dictating my Lyme treatment, mainly because they are shitty at it. They deny and charge higher prices, so much so, that I’d rather pay cash (at much lower rates, I might add). If I was on Medicare or Medicaid, I’d have the same problems. Maybe Lyme is a special case, right now, with no consensus on how to treat, for how long, or what to do for patients who fall into the category of ‘chronic or persistent Lyme disease’, like me.
Meanwhile, I struggle to maintain a balance between self-care and usefulness.There are things I have let go without my knowledge. Through a stroke of luck (Jake, it’s Jake wanting all my hours at the pool), I’ve had some extra time. I hadn’t filed papers or gone through my files in a long time. I cleaned the refrigerator and the pantry. I went downstairs and cleaned long neglected corners of the house. The acts lightened me and gave me the sweet illusion of control. I was deeply disaoppointed, too, because man, I thought I was keeping up. It was a disconcerting peek into old age—the shocking ease with which things can get way out of hand.
There does come a time when you have earned retirement. Full retirement. The kind of idleness that means your biggest decision might be whether to put on clothes. My dad is there. At almost 89, he can do whatever he damn well pleases. At some point, I’m going to have to reassess where I am with Lyme, retirement, and usefulness. I’m putting it off as long as possible, because I might not like my choices. A lot can change in a short time, though, that much I know. And sooner or later, if I’m super lucky, I’ll get where my dad is. I don’t think I’ll wear clothes.
I like to google the side effects of the drugs I take. I used to do this several times a day, mainly because I could never remember what they were from hour to hour. I do it a lot less now. A month ago, some not so good symptoms crept back (a whole other google rabbit hole). I went back to the doctor and I started taking liposomal artemisinin, a Chinese wormwood derivative that is effective against malaria, babesia, and Lyme (babesia is often a Lyme co-infection) The liposomal part is a fatty matrix that stabilizes the artemisinin part and helps the body absorb the artemisinin. I’m also taking a few more herbs. Cumanda, an anti-bacterial herb from the Campsiandra Angustifolia tree in the Amazon is one. Cumanda is for neuroborreliosis, or “Lyme brain”. I’m also taking teasel root extract. That one is from Dypsacus Sylvestris, a biennial teasel plant. Teasel root extract is a cyst buster and biofilm remover. See why I had to google this shit several times a day?
I wondered which one of these herbs was causing my brain fog, liver pain, fatigue, itching, stomach problems and achy bones. As usual, there is no definitive answers. Could be the liposomal artemisinin. Some of the symptoms might be from teasel root. Others might be from cumanda. Why do I care? It doesn’t really matter, does it? Either way, I have to take them, or the alternatives, Flagyl or Mepron, or any of the pharmaceutical drugs I have also used. They have some of the same side effects, and some others that are worse.
One of the things I’ve noticed now that I am noticeably better is the herxes don’t get easier. They are not as bad as they were earlier, but again, does it matter? Sick is sick. These are mostly walking around doing things and crashing later in the day herxes, so shouldn’t I be thankful for that? I should be, but I’m not.
Oh, I forgot the last one I’m taking now, MC-Bar-2. That one is for bartonella and is a medley of herbs like Skullcap, Jamaican sarsaparilla, cordyceps, Pau d’Arco, White Willow and more. I started to read about each ingredient, but stopped after cordyceps, a fungi that the Chinese grow on caterpillars (and I’m drinking that shit? GROSS!). Also taking low-dose naloxone, the drug they use to reverse heroin overdoses. They caution me against taking any narcotic every time I refill that one, but I happily down the little white pill in hopes that it does, in fact, boost brain activity in inflamed brains like mine.
Sometimes I wonder why I keep taking all this stuff. Then Lyme comes creeping back. Once bugs get in your system, it’s hard to eradicate all of them. Once Lyme goes untreated for any length of time, no one knows if you are ever “cured”. Each bug has unique properties that make them hard to eradicate. Cysts, biofilms, protein-changing strategies, even immune modulators in tick saliva, It’s as though the ticks and the pathogens they carry form an evil synergy designed to fool the human immune system.
I am not making this stuff up. I wish I were sometimes. The Lyme community debates the validity of herbs vs pharmaceuticals, IV antibiotics, diet, and alternative therapies, like rifing (a highly controversial technique using electromagnetic waves, the patient holds a metal cylinder in each hand, rather like a jumpstart cable for car batteries). The herxes I experience tell me that the herbs work, sometimes more effectively than the pharmaceuticals. Sometimes I wonder if I’ll be on some form of maintenance herbs forever. That wouldn’t be too bad, except that the herbs taste foul. They have to be taken on an empty stomach, with a small amount of water. I look at the mixture as a tastebud wake-up call.
Why do I keep looking up both the disease and the cure? I think I have to double check to see if a) I have Lyme, and b) I am still sick with Lyme. There is a third option. I have the ridiculous theory that since I have Lyme, I will get no other diseases. The sheer lunacy of this insures that I double and triple check my symptoms, making sure that I only have Lyme. You can die from Lyme, but it is rare, if it is treated. I had to google Lyme fatality rates just now. They are low, but phrases like “drastically shortened lifespans” and “death from secondary infections” pop up too often for my taste.
There can be no other reasons than these. It’s fucked up that I still need affirmation that I do have Lyme. I don’t want it. Is that why I do it? Maybe this time I’ll see that all these symptoms are not Lyme! It’s something else, something easily cured with a few pills. And don’t you think I’d be okay with being sick by now? Apparently not. <sigh> Google will have to continue to be my support group, because I don’t particularly like support groups. It’s not that I don’t want to share information. It’s the few people who seem to use the forum as an opportunity to whine on and on about how sick they are.
Ooh, that was kind of mean. I’m sure they can’t help it, and really need the support. I like a different kind of support. I like it best when people treat me normally, teasing and harassing me as if everything is fine. It is, mostly. Except when it’s not. Then I google away, double and triple checking. Just in case.
I was going to write a paean to my Dad on my blog this week, being Father’s Day and all, but my dad really, really hates Father’s Day. Instead, I realized that I lie to myself about Lyme now. Yes. It’s true. You can lie to yourself about anything. Think about it. I’ve decided I should be just about well now, so I have rationalized my relapses by saying I’m “super-tired”. I can do this for days. In fact, I just did!
This past week, Denver’s Lighthouse Writers host LitFest. Workshops, readings, and salons where authors famous in the literary world discuss literature. I needed to get back into the writing world. I took the week off from work and volunteered. I also took five or six workshops. I started to backslide the fifth or sixth day. I told myself I was tired from working my brain and social skills for the first time in at least a year and a half. Lies, all lies. As my daughter said today, “You want me to tell you when you’re relapsing? Because I could’ve told you that four days ago.” Cue eye roll.
Why do I have such a hard time admitting to relapses? This must be a new thing, tied into my belief that I should be well. Or maybe there is more to it than that. When I was little, when we were sick, Mom had her tried and true medicines and sick foods. Ginger ale and jello for stomach upset, Coriciden-C and warm saltwater for colds and sore throats., and calamine lotion and mercurochrome for everything else. This lasted as long as you were actually ill. We were not allowed to watch TV, or run around, or goldbrick. As soon as we were well, we were expected to get on with it. She was a good example, herself. I rarely saw her sick in bed, unless she had a raging cold, was throwing up, or when she had cancer (okay, pretty good excuse, Mom). Other than that, she got up and powered through everything. Dad was not much different. He scared the shit out of me when he had back surgery. I was a freshman in college, so to see him laid out like that for the first time in my life was shocking.
My point is, being sick only got you so much sympathy in my house. I absorbed these lessons and chafe at not being well. I don’t revel in the attention being sick gets. In fact, I hate it. I also hate not having any fun, and believe me, when you’ve been sick a long time, even work is something fun. So I lie. Maybe I hope that the lie will morph into the truth. That would be great. I do it in all sorts of ways. There’s the ‘wow, I look pretty good for having eaten 400 potato chips this week’ lie. The ‘twenty minutes of weights and 800 yard swim is a tough workout’ lie. The ‘I deserve this <blank> my life has been so hard this week’ lie. That one’s my favorite and usually involve either clothes or makeup. In truth I don’t ‘deserve’ shit, it’s a self-serving lie, the best kind.
In reality, though, super-tired means a relapse. My bones ache, my brain thrums and I bang around like a woman in high heels after three glasses of wine I rub my eyes because they burn and itch and blur up. It is most certainly bartonella. I’m taking medicine, so a reaction means dead bugs, which means a sore liver and more tiredness. It’s all so boring. I think that might be my problem. I am bored with Lyme. Bored with doing only what I can, not what I want. Bored with babying myself, always making sure I get enough rest, eating well, and all that crap. Bored with my own limitations. Lying makes it more bearable. Am I really fooling myself, though? It would seem I am such a good liar, that I can fool myself quite easily, but then, one has to want to believe in a lie to get away with it.
I don’t see any way out of this box. I’m not well enough to forge ahead with my life with no consequences. I’m tired of being sick. The lies work! Father’s Day is still this weekend. I’ll call Dad, tell him I love him. I can embarrass him any time I want. I’ll get to that paean someday, Dad, but you gets a pass this weekend.