Stalled

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?

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priorities

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.

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dad

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.

 

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acceptance?

I fucking hate babesia. Babesia is one of my co-infections, a malaria-like parasite also called a “piroplasm”, whatever the fuck that is. It clouds my mind and saps my energy. I get angry and depressed for no reason. My eyes go wonky. All the normal boring crap, too, like fatigue and muscle aches and joint pain. For once, there is no anger at this flare-up. Am I being forced into accepting Lyme? Or am I worn down with fighting? I don’t think either is quite true. Acceptance, at least for me, smacks of giving up, worn down implies defeat. I’ll settle for the gentle euphemism of “learning to live” with Lyme.

My doctor shared his frustrations with his inability (another tricky word) to predict the outcomes of his Lyme patients. He felt I should be well by now. He wonders what factors we’re missing. So do I. We discuss my lifestyle. Am I drinking? Why, yes. I tried to drink twice in the last month. It didn’t work out too well the next few days. Alcohol is off the table once again. How about rest? My number one priority. I nap most days and get at least eight hours a night. I am like a four-year-old trying hard to give up naps but too sleepy to actually do it yet. What about stress? Yes, what about stress. Oh, you mean the stress of living? There is the stress of existing, which is essentially what I did for almost two years, and the stress of living. Existing is a sealed bubble of eating, sleeping, and being sick. Living is working, socializing, exercising, going out, traveling, and interacting with the world. YES IT IS STRESSFUL! I almost always feel behind the eight ball of my own life. Do one of the things and be sick. Do all of them and feel great. That uncertainty is stressful. So is deciding which one to prioritize on any given day.

I can accept that lifestyle choices and managing stress are all on me. My doctor accepts managing my protocol. What both of us struggle to accept is what we are missing. Was it the eleven surgeries I’ve had during my life? Perhaps all the antibiotics I took for acne in my late teens. The drugs I enthusiastically experimented with? Maybe something in the environment. It sure as hell isn’t my disposition. I’m fricking Pollyanna. We may never know for sure, and that in itself is a stressor.

Today marks the first day in weeks that my brain is working well. I had no idea how far down the slope I had gone. That’s the hallmark of Lyme brain (such a warm, fuzzy little description for losing your mind). It’s so subtle. I hope I can learn to recognize relapse symptoms more quickly. I don’t like the sensation of somnambulating through life. I may appear and act normal (well, as normal as normal is for me), but if you ask me to remember too much, or do something mentally challenging, like math, you’ll see the gaping holes in my speech, thought and memory.

I am ambivalent about this latest flare-up (relapse, setback, shitshow, whatever you want to call it). Overall, my symptoms are sputtering and losing steam. Either that or I am learning to live with my new normal. Is that acceptance, or is it defeat? I must confess I am satisfied with my current situation—lifeguarding, Airbnb, writing, exercising, and keeping the house together. I can control this amount of stress and chaos. I can adjust the intensity and frequency of all these activities when I need to, and I can push it, or I can take naps and rest. Of course this isn’t what I want. Like Veruca Salt I want it all and I want it now! I hate having limitations. Waaah! I know, cry me a river.

I guess acceptance means being content with the parameters of my illness. When I first typed this, I said “the illness”. I can scarcely admit even now, that it is MY illness, an illness that will be mine and belong to me until I die. This is just for now. I don’t want to be in this particular phase (which is basically the lifestyle of a five-year-old) forever. However, it is not merely existing anymore. It is a life, and not a bad one, either.

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lovesick

Infect me. Really. Four years after my divorce, I am ready. Or am I? And why did I choose the word lovesick? Why not simply love? I’m not sure, I’m only certain I want the heart-pounding, stomach-swooping sickness that falling in love brings. I’m ignoring the other side of lovesick. The anxiety and uncertainty, the delirium and yes, obsession it brings.

Some days I’m not sure I want to handle more stress, good or bad. Other days the urge to be swept away, overwhelmed by something outside of myself is intense. Several things vex me about this burgeoning desire to be lovesick. What if I think I’m open to love but I’m not—I’m sending out stay away vibes without being aware of it? This is a distinct possibility. My capacity for deluding myself is infinitely reliable. My intuition is of no help here, it is blind to my own faults. Hopefully I’m sending those vibes to the men who would be wrong for me. Then again, I had a talent for choosing the wrong guy when I was younger. Maybe I haven’t lost that talent yet. I also tend to protect my heart. I know, don’t we all? I have raised this to a fine art, probably from the moment my birth mother gave me away. Sometimes I wonder if I’ve ever been completely open to intimacy. I’d like to think I have and am, but I wouldn’t swear on a Bible or anything (not that swearing on a Bible is reliable with an atheist, anyway).

What if the object of my desire is already in my life, and I am too blind to see it? See above. My talents are freakish and specific. I can tie cherry stems in my mouth. I can identify obscure pop songs. I know how to fold fitted sheets. My past history tells me I have had fabulous men in my life who I’ve pushed away, because they were way too together for me. I have changed, but who knows? Self-sabotage is also another of my talents. The corollary to this is what if the sickness isn’t reciprocated? That’s thinking awfully far ahead, but still…Strangely, this doesn’t freak me out as much as it would have in the past. I don’t have to have love. I want love. The difference is immense.

The last concerns all have to do with Lyme. What if I can’t handle love? This sounds ridiculous to the healthy, but to us chronically ill people, this is a real issue. Stress, good and bad, can trigger a shift. Being lovesick could translate into simply being sick. On the other hand, perhaps love helps the body and mind heal. Wouldn’t that be great? My yearning to be lovesick might be an intuitive quest for health. Kinda takes the romantic part out of it. Which brings up another issue: am I chasing after a high that is unrealistic? After all, that’s what I daydream about, walks in the park (preferably on a sunny, mild day), romantic dinners, slow dancing in the kitchen. not the reality of dirty socks and clashing needs. Sometimes I worry that this makes me more than a little silly, like I haven’t evolved much beyond seventh grade crushing. If only it were that easy. I’d get my friend to go to his friend with a note that has two checkboxes: do you a) like or b) don’t like Melissa? Fill out and give back to <fill in friend’s name here>.

Lyme also has given me a checkered resume. Who wants to take on someone who has health problems? In fact, on paper, I pretty much suck. I want someone to give me a chance, but would I give them a chance? I guess that depends on how lovesick I am. Also, (and for me this is gigantic), how judgmental is this person? It is surprising how many people I have met who do not understand what it means to be chronically ill. Those of us who have been lucky enough to experience the special gift of serious illness have usually learned far more than they wanted about themselves. We don’t judge. You never know what someone else is going through. I’m not sure I can be with someone who helpfully suggests that maybe I need to suck it up and then I’ll magically feel better. That man is not going to be too understanding the fourth of fifth time I need to go to bed for a few days.

Jeez, I might have talked myself out of wanting to be lovesick. It all seems like a lot of work, finding someone, getting to know them, falling in love with them, coexisting with them, being open to being hurt…nah…this is one bug I think I could happily live with.

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almost

I have discovered recovery is more difficult than being ill. I am in the land of “almost well”, a state as close to purgatory as I can imagine. The difference between almost well and healthy is a sheer  mountain wall, technically difficult and requiring great strength. The difference between illness and almost well is a gentle poppy field like the one in the Wizard of Oz, easy to cross, yet vast and with many rest stops. The illness is a narcotic, blunting the endless trek to almost well. I suppose there must be a boulder field with jagged rocks before one runs into the monolithic wall of almost well. The effort is takes to climb the small boulders clears the mind and gives one false hope. The boulder field, for me, had a few fields of poppy, where I stayed, stupefied and disheartened once again. I also found a few trails, where I got a fleeting glimpse of normal.

It has been nearly three years since my tick bite. 2016 was the worst year. I earned a whopping $1000 for the year. I don’t remember large portions of the year. The fact that I wasn’t remotely aware of how bad it really was is the narcotizing effect of a serious illness. For some Lyme patients, especially those of us who did not get a quick diagnosis, doctors use the words “chronic Lyme disease”, or “post-treatment Lyme disease syndrome” (I like that one, wordy and scold-y at the same time). I’ve been denying my status as one of those who might be chronic. I had to think about what “chronic” means, as it pertains to Lyme. If I google these terms, I get a long list of sites with vague definitions that mainly discredit the notion that it exists. It does. I’d love to not have relapses, or slides, or persistent, chronic fatigue. I like to pretend I’m just fine, but that doesn’t work, either. There are a lot of theories about this. Fuck theories. They don’t do jack shit for making me healthy.

The tone of my discussions at the doctor’s office have changed. We talk about “plateaus” and “shifts”, as if Lyme were a geologic event. I need to once again obsess over my symptoms, or lack of them, to gauge whether I am having a relapse (shift), or holding steady (plateau). My big fear is that I will plateau at almost well. Almost well isn’t awful. At this point, unless I have a seismic shift downwards, I won’t die of Lyme. The chronic, almost well part is the fact that sucks. It means I will always have to manage my energy and my health. It means I will be a delicate flower, getting enough rest and good food, and not getting stressed out. BORING! But definitely manageable.

If I sound a little whiny, I am. I feel a lot entitled to my whininess, until I think about other people I know. Almost well would be a dream to some of them. I know this, yet I persist in feeling cheated. Cheated out of what, exactly? There are no guarantees that me or anyone will live long and perfectly healthy lives. Lyme has insured that I will take care of myself for the rest of my life, and that’s not a bad thing. Sometimes I meet people who have had very few health challenges. My dad comes to mind. He’s now had three surgeries, but before his knees were replaced he had had one back surgery in ’79 or ’80. He is not happy when his body isn’t working. He’s not a bad patient, but a resentful, reluctant one, as if these things should not be happening to him.

I’m not knocking my dad. His fighting spirit and unwillingness to fold are some of the many reasons he’s happy and healthy at 88. I don’t have that luxury anymore.  I’m not going to waste my energy on resentment disbelief. Because I am pathologically optimistic, I am going to assume (as I do in every bad situation, even when it’s obviously false) that I will plateau at normal. I now have the luxury of deciding what is important to me and making sure that’s what I do. Is it my house, or traveling? Do I like where I’m living? What do I really, really want to do that I haven’t done yet? Jumping out of a plane? Hell, NO. RVing? YES. Two questions answered. There are a bunch more waiting for me.

 

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time

If I were to characterize myself, I’d be the grasshopper in Aesop’s Fable #373, “The Ant and the Grasshopper.” The grasshopper dances and frolics all summer, while the ant toils away, gathering food for the winter. When winter comes, the cold and hungry grasshopper begs the ant for food and shelter, and is refused. The moral of the story, of course, is the daily grind is a far worthier pursuit than fun and games. I have trouble with this concept. I’ve been content to drift along on the gentle waves of a privileged life. Being content is not a recipe for professional success, however. My friend Laura and I talk about this often. Neither of us would say we were ambitious, an almost shameful admission in America. When I was younger, I chose a path that suited me, that of corporate housewife. We moved every couple of years, so I worked part-time, usually at jobs that had some benefit to the family: free childcare, free gym memberships, or discounted clothes and gear. I took pride in being a good housewife. I drifted. Things changed.

Lyme disease, as in every aspect of my life, forced me to reevaluate. I am now in a big hurry to “do things”. And by doing things, I mean being true to myself and not being afraid. Life is short. I know that now, at the solidly middle age of 58. Maybe part of this hurry IS middle age, the tidying of loose ends that were neglected earlier. Most people toiled away and neglected friends, family and fun. I was fortunate to have the opposite equation. We could get into a whole discussion of whether the trade-off of marriage was worth it, but why? I can’t change my choices, nor do I want to. I have been able to experience life events fully without the interruption of a job. I was present during my mother’s illness and her death. I have helped my parents through surgeries and moves and have gotten to spend time with them. I was able to torture my daughter by being there for most of her life. Okay, there was that time I forgot her at her math tutor’s house and maybe I was late for a few things, but I was there. My not working allowed my ex-husband to concentrate on his career, and while that didn’t work out so well for me in the long run, I still don’t regret it.

What changed? There was no epiphany, nor was there one cataclysmic event. There were a series of small events. A marriage foundering slowly. An only daughter leaving the nest. A random afternoon spent watching the Westminster Dog Show with the daughter. The announcer told the story of the Hungarian Komondor, whose long, corded coat protected the sheepdog from wolf bites. She thought that was fascinating, and from that a germ of an idea sprouted. I started to write a book about Golden Retrievers. Believe me, if I had known how hard writing a book was, I never would have done it. I slowly dipped my toes into the waters of the writing world.

While I wouldn’t recommend a serious illness to anyone, I am once again grateful for Lyme, and especially for neuroborreliosis. The reawakening of my once inflamed brain has produced both an urgency and sharpness of thought that has been highly beneficial to my writing and myself. Man, the above sentences are a testament to silver linings. I can hardly imagine how anyone could benefit from losing one’s mind for an extended period (say, longer than an acid trip), yet I did. What I do with this newfound urgency is an ongoing struggle. I am not fully recovered. Energy and stamina are precious commodities in my world. Writing about my past, especially the physical and sexual abuse, is surprisingly exhausting. Dating is exhilarating and exhausting. Taking care of myself and my home is calming and exhausting. Looking for a “real” job falls to the bottom of the list for now. Lifeguarding will have to suffice as I put myself back together. I don’t have an old life to return to. There is no loved one, no job, no “normal.” I was in the throes of reinvention when Lyme hit.

It has taken years to discover my voice, and what I must write. I was my own worst enemy. When I think of all the time I have wasted doubting myself when I was younger, I cringe. Oh, I still doubt myself, often and with great energy. The difference is that doubt doesn’t stop me. I must write, and I must write about deeply personal things. Is this what ambition feels like? Or is this a form of self-therapy, or personal flagellation? I could have chosen an easier path. The arts are no way to make a living.

The metamorphosis from ant to grasshopper continues. I know I shortchange myself, it’s a problem. I work much harder than I let on. I also think waaaaay too much, as any friend of mine knows. As I attempt to embrace the thorny new normal, I will remind myself that I’ve survived happily for most of my life as a grasshopper,  dancing, frolicking, and experiencing life.

 

 

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deflate

My favorite! I didn’t think anyone noticed this particularly delightful symptom, but they do. It’s when you feel pretty good—you’re shopping for furniture or at a concert at Red Rocks, or just playing pickleball when WHAM! Deflate. I’ve been thinking about exactly what happens, and how perceptive people can notice so quickly. I’m a fairly high energy person, sometimes hyper, even (feel free to correct me if I’m wrong, friends), so when I am quiet and still, it isn’t normal. The Lyme deflation is swift and complete, reducing me to a zombie-like trance. In the space of less than fifteen minutes I can go from peppy and happy to paper-doll flat (I really should insert a Tom Brady reference to Deflategate here, but I can’t think of one. Feel free. Really.).

Today I deflated an hour into playing pickleball. I have had a lot of bad days lately, not sure why, but am I ever sure why? The symptoms have all risen to above my neck. I still have liver pain, kidney pain, joint pain and fatigue, but those are all intermittent and no big deal. It’s the brain/eyes/teeth trifecta that make me miserable. For the past three or four weeks, my eyes have been wonky. My left eye has this giant grey floater that swings from side to side, daring me to shift my eyes from side to side, like I’m watching a bizarre tennis match inside my eye. It drives me crazy. I’ve had eye problems since the beginning of Lyme. Itching, burning, an eyeball ache, floaters, blurry spots, ghosting in my peripheral vision, and now this big grey glob in my eye.

I was playing okay, I was in a bitchy mood, which is not uncommon. I had energy and made most of my shots. About an hour in, my eyes acted up. I rubbed them and they teared and burned and that damn glob swung back and forth, distracting me from the ball.  Within minutes  my head pounded and my energy dissipated. A fullblown deflation. Two of the three players I was with stopped and asked if I was okay. Wow. I didn’t think I looked different when I deflated. As I left the court (after losing, goddammit!), I said I wasn’t feeling too well. They said they noticed. Others noticed when I gathered my things and walked out.

Why am I unaware of my own deflation? I mean, it’s happening to me, you’d think I’d notice. Perhaps all my energy goes into maintaining my composure while out in public. If I’m home and I deflate, I can collapse on the sofa or in bed and not worry. If I’m out doing something, it’s different. The energy it takes to simply walk or speak is almost out of my reach. I’ve been thinking about when I see this kind of collapse in others. A small child deflates naturally, several times a day, either into sleep, or a tantrum, or more often than not, a stupor. Maybe that’s what people see happening to me. I can stupor with the best  of them!

The silver lining is I’m not super aware of my collapse. I can acknowledge my decline and be aware that I have to get home. Other than that, my ability to respond to other people is pretty much gone. I think because I am usually gregarious and very tuned in to the moment I might get a bit of a pass from most of my friends. At least that’s what I hope.

I made it home, and now I am dressed in my favorite sloppy outfit, ensconced in my magic blue writing chair and high as a kite. Medicinal marijuana is a gift from nature. Don’t knock it until you’ve had Lyme. I hope this particular deflation doesn’t last too long. Hey, another silver lining: this may be the first time I have stayed coherent during my collapse! If you are my friend, don’t correct me on this one, please.

 

 

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confinement

Being sick is boring. I used to joke that Lyme had transformed me into a swooning Victorian lady until shit got real. Then it wasn’t funny anymore. Seriously, think what it must have been like to be sick before, say, 1910. There would have been days, weeks, hell, months of confinement with little to do but lie there. Of course, if you were rich, there was a staff of servants to tend to your every comfort, but aside from talking to other people or watching the world outside your window or reading, there was nothing to do. Some people might argue this was the perfect time to contemplate one’s navel. I would argue they have never been really, really sick for a long time, so fuck them and their lofty goals.

This is where modern comforts become indispensable. It’s as though all of our advancements have been designed if not solely for long term illnesses, most certainly for our convenience. Hot, instant showers, check. Microwaves for easy cooking, check. Cell phones so you can stay connected, check. Television to pass the time, check, check, check.

TV is complicated. It can be used to enrich, enlighten, and entertain. That’s the good side. TV can also pacify, stratify (take a look at the differences in TV habits of America http://www.nytimes.com/interactive/2016/12/26/upshot/duck-dynasty-vs-modern-family-television-maps.html if you don’t believe me), and nullify. That’s the bad side. I liked the bad side while I was sick. When I say bad, I mean mindless. I watched, in no particular order, Law and Order: SVU, Snapped, Property Brothers, Fixer Upper (okay, this one is not that bad), Chopped, House Hunters, Hoarders, Intervention, Toddlers and Tiaras, and Project Runway. Oh, and the Hallmark Channel (at some point I will dedicate a whole blog to Hallmark). What is it about these shows that tickled my brain when it was inflamed? I’ve thought about it a lot and I think these shows have some similarities that I needed. For one, each of these shows followed a strict pattern. They all had distinct noises/theme music that signaled each segment of the show. None of them require any thought (except maybe Law and Order), and all can be watched with half of your attention, which is good because while I was sick I had the attention span of a Retriever puppy. All these things combined made them perfect for entertainment while sick.

I’ve never been one of those people who had “my shows”. My nanny used to talk about her shows as if they were close friends with rigid schedules. Saturday night? Lawrence Welk. Sunday night, Ed Sullivan. She had her soaps. She LOVED Carol Burnett and Red Skelton. At the time, I thought these were signs of a deeply impoverished life. Now that I’ve spent over a year living a deeply impoverished life, I don’t judge. TV fills the void. You’re too sick to socialize, or do anything useful, but not sick enough to stay in bed all the time. TV brings life into your own life, people talking and doing things. For many shut-ins, TV becomes a lifeline to the outside world.

I did watch other things. I tried watching the news until the election coverage became so shrill and disturbing I had to turn to something else less contentious, like “Bad Girls Club” (If you haven’t seen it, you should, if only to see how low TV can go). I tried watching movies. The only ones I could follow were either children’s movies (“Up”, “Toy Story”, “The Incredibles”) or stoner movies.

With my brain returning, my TV time has sharply decreased. What I do watch is more cerebral and less filler. I’ve returned to Netflix to see shows like “Stranger Things”, or “Frankie and Grace”. I still can’t watch long convoluted dramas like “House of Cards” or “Game of Thrones”. To be fair, I don’t like shows like that much anyway. What I’ve learned during this whole ordeal is sometimes TV, especially bad TV, has a place. I’m not recommending a steady diet (GIGA is real), but when getting through the day is your only goal, TV can be a lifesaver.

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genes

With all the talk about elections, race identity has become a thing. White people are clamoring to stay on top, everyone else is frantic, and with good reason. Recently, a dear friend had her DNA tested, the kind of test that gives you percentages of your heritage. Hers was a veritable smorgasbord of ethnicities. She looks what people like to call ‘exotic’, beautiful and not quite white. Most Americans classify themselves by family history, even if that history has been altered by name changes and inconvenient ancestors eliminated by omission. Some of us are unknowns, unless we choose to look.

I am adopted, this is the earliest fact of my life. Born in San Antonio, I was given to my parents when I was six days old, in a dress my mom brought for my birth mother to dress me in. Aside from the heartbreaking aspect of my birth mother dressing me to give me away, I wondered. Who am I, really? When I got curious, about fifteen years ago, I discovered that my birth mother was/is Hispanic. Big deal. I was always the darkest white person in every class photo, anyway. How many of us know what ethnicity we truly are? Women have obfuscated and dodged paternity questions since forever, due to the murky politics of sex, rape and love. But now, as American citizens are busily sorting and screaming about exclusion and inclusion and whose lives matter and lets get rid of illegals, this self-identification thing grows complicated.

This does go back to Lyme disease, because everything in my life now returns me to Lyme, and why I got so sick. Well, it turns out one’s reaction to Lyme is influenced by genetics and age (of COURSE age, as in, the older you are the sicker you can get). Cytokines, which are the body’s most important immune signaling molecules, decrease with age. Strike one for me. I guess I should be glad I’m not older. There is also a certain genetic variation that makes some people sicker than others. Did I get that, too?  Like everything about Lyme, it depends. It depends on what bugs were in your tick bite. It depends on when you started treatment. It depends on whether it is the right treatment. It depends on what tests you took and how accurate they were. Maybe my genetic makeup made me get sicker than others. I’ve always viewed my adoption as a sort of talisman against sickness. As I wrote “unknown, adopted” across the top of the family health section in every medical intake record I’ve filled out, I felt a smug sense of destiny—if I don’t know it won’t happen. Hey, I know it’s magical thinking but it’s mine, so there.

I was never one of those adoptees who had a burning desire to know my birth parents. Until I had Katie. At some point, I wanted to know why she loved animals, or where her artistic streak came from (it certainly wasn’t from me or her father!). I ordered the adoption papers the Methodist Mission Home in San Antonio would release, the pertinent facts blacked out like a classified war document. I searched for three years. I registered with adoption search agencies and tried to figure out what I could from the meager information I had. An “adoption angel” saw my information and sent me the link that opened the doors to my heritage.

My birth father was white. In fact, he was her Journalism teacher. In high school. That’s right, my birth mom got pregnant in February of her senior year with her 32-year-old teacher. It’s hard to put myself in her shoes, much less in the times (1958, McAllen, Texas). I thought about this even more when I read the reviews of “Loving”, a new movie about the Supreme Court decision to strike down interracial marriage laws. Would my birth mom been ostracized for having a half-white baby? Would my birth father not have married her because she wasn’t white? This puts a whole new spin on why she put me up for adoption (other than the obvious). She was number five of eleven children. Her family had lived in the valley since the 1860s. I don’t know why I like this fact, other than it makes me really, really Texan. I gathered what details I could about her life after me. I found some pictures of both her and my birth father. It’s obvious, I look like both of them, there’s no doubt at all in my mind that he is my birth father. It was a validation, too. He taught journalism, her family owned a restaurant. He played musical instruments, she went on to study journalism in college. Somewhere out of those ten birth aunts and uncles, I bet there are artists and animal lovers.

I was surprised how comforting it was to see pictures of my birth parents. I still don’t know their medical histories, but the days of magical thinking are over. I have genetic flaws, like every human on earth. A genetic anomaly might be what made me get so sick with Lyme. I will still tell people I am half-Hispanic when the subject comes up, and it comes up often. Think about it. Even the most liberal-thinking make classifications and inquiries while getting to know someone. Where are you from? What kind of name is XYZ? I wonder now, will some people look at me differently if they know my background. There’s a powerful video making the rounds, a room full of people opening their DNA tests together. The surprises are evident, the video’s obvious purpose to shatter the notion that anyone is pure anything. Maybe we should all take a DNA test.  Level the playing field a bit. Meanwhile, I have to get back to fighting Lyme, genetic destiny be damned.

 

 

 

 

 

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