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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Katie

I discovered two things about myself the day Katie was born: I would die for another person, and I would kill for another person. That a love so fierce could spring up inside of me was a surprise I think no new parent can anticipate. I’d been waiting for her my whole life. Why have I not written about her until now? I suppose I felt that we’re far too close for me to be objective. Then it occurred to me. I don’t have to be objective. She is the center of my universe. Anyone who has known me for even a short time knows this.

Sometimes I don’t know why I love her so much. She’s fractious, strong-willed, and completely uninterested in pleasing me. Within hours of being born, she was kicked out of the maternity ward for disturbing the other babies. I was amazed when I heard other babies crying. They sounded puny compared to the robust shrieks that Katie produced. The only times she wasn’t lustily demanding attention were when she nursed or slept. Katie was a world-champion sleeper and eater. She weighed 26 lbs at six months. She took naps until she was seven.

Katie is an artist. She would not take direction or classes. A wise art teacher told me to buy her supplies and books and leave her be, so that’s what I did. Sometimes I think she is part mermaid, part fish. She took to water like, well, a duck. That was her first word, at seven months. She hasn’t shut up (at least to me) since. She drew this picture when she was five:

This is how she saw herself, even then. She loved animals from the time she was conscious. Once, we went to a pioneer farm outside of Houston with my parents. While we weren’t looking, two-and-a-half-year old Katie was found hugging a sow who weighed at least 400 lbs. The farmer was apoplectic. Katie was thrilled.

She is one of those lucky people who knew she wanted to work with animals or make art from a very early age. She has never deviated from this, and today she is working to become a graphic arts designer for a zoo. I don’t know where these traits came from. I am not artistic, neither was her father (There are reports that this came from an uncle on her father’s side, but no one is sure, because that side of her family is shrouded in secrets and mysteries.)  No one is obsessed with animals. My side, of course, is a blank. We don’t know what my aunts, uncles, or cousins love because I’m adopted.

I think this was why her birth had such an impact on me. She is the only person in my world who looks, laughs, and talks like me. She gets me in a way that is primal and instinctive, the same way I get her. I can’t judge how I was as a mom. I made many mistakes, I know this. I also know that I did some things right. She knows I love her and accept her for who she is, no matter what. There were times when it might have been easier to crush her spirit to get her to do what I wanted, or to make my life a little less difficult. My intuition told me this was not the way, it would never be the way.

There were, as expected, many rough patches. The usual preadolescent angst made her snotty and dismissive. A major upheaval in eighth grade damaged and delayed her teen years. She understands #MeToo, just as I do. She left home for seven years, a necessary time to grow. She returned when she was twenty-five. I recognized she had grown, but my ex didn’t. They have long been oil and water, and as she’s gotten older, they have started to figure out how to have a relationship.

We live together now, in a house big enough to give us our own space. We prefer living with each other. There are never arguments about much of anything. Someone does whatever needs to be done. Oh, sure, we bicker sometimes, and sometimes get frustrated with each other. We’ve reached that stage where she is right about 90% of the time, damn it! It does work, though, mainly because we both need a lot of space.

When I got divorced, and later, after I was sick with Lyme, Katie has risen to a true equal. She has taken care of me as I took care of her. We will always be mother and daughter, but we are also two single women who are friends. Quirky, loyal, artistic, quicksilver, and most of all, herself, I will always love her more than any other person on earth, unless she decides to have kids. I’m not holding my breath, and it won’t matter one way or the other, because like I learned from my parents and she is learning from me, I love her anyway, and all I want is for her to be happy.

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toil

It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.

We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.

Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.

I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!

I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.

I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.

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DNA

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.

 

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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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liar

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.

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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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mess

I was once a hot mess. I know this because I’ve asked old friends what they thought of me back then. There was no rhyme or reason for my behavior in my teens and early twenties. I was completely unaware that I was, in my own way, desperately trying to work through my damage. Sometimes it is easier to admit to sexual abuse than to discuss the fallout. What we hide in our teens and twenties, and sometimes, our lifetimes, and how we present ourselves are often at odds. I’m willing to bet not one of my peers in high school had any inkling that I was sexually and physically abused by my brother, just as I had no inkling of their troubles.

Let’s go back even further, before any of that happened. My dad says he knew I was going to be a handful at an early age. What he meant by that is I am a natural flirt. Does this go hand in hand with someone who is a sexual being? I don’t know, all I know is I enjoyed the game. Of course, the game was interrupted and quashed at an early age, through no fault of my own. This had a tremendous effect on my budding sexuality. I’m sure I gave off mixed signals, especially in high school. I was desperate to be wanted, yet terrified that anyone would want me. I wanted to be physical and experiment, yet some part of my brain would not allow that.

I feel certain my therapist would tell me this is common behavior in sexual abuse victims. The next phase is definitely common behavior in sexual abuse victims: promiscuity. I am neither proud nor ashamed of that phase in my life. The mid-70s were a heady time for sex. Pre-AIDS, post-birth control, and post-women’s liberation, the act of taking control of your sex life was, for women my age, almost a political statement. I was in Austin, Texas at the time, and the city was teeming with liberated women. I had fun. I had some fabulous encounters and some scary ones and many that simply were. The key thing was that I was in control of my sex life, and who I had sex with. Mind you, my taste was all over the place. My standards were capricious and ill-thought-out. I was at peak hot mess-ness during this period. It’s a wonder I survived relatively unscathed.

Then I got married. Did I submerge my sexuality to make the marriage survive, or did the marriage submerge me? I’m not sure how it worked, only that after a few years and many, many missteps, I was no longer true to myself. I didn’t know how to ask for what I wanted, and I’m not sure he did either. No blame, ours would hardly be the first or last marriage where sex sputtered and died.

Lyme struck just as I was ready to fully reclaim ownership of my own sexuality. Divorce, telling my dad (finally!) of my brother’s abuse, and therapy had combined, along with being single, to get to a place that was healthy. Not that I was unhealthy,  just fucked up enough to have to work through all that crap to get to a place that felt healthy. What Lyme gave me was the gift of contemplation times ten. I worked through everything else until there was nothing else but this, the most personal of issues. I almost feel ashamed discussing sexuality in my blog, but isn’t that part of the problem? Why should I feel that way? Why should any of us feel that way? It’s not like I’m confessing to dressing up like a chipmunk for my sweet bear (not that there’s anything wrong with that…). I’m admitting I’m a sexual being. It almost feels frivolous, and, in the grand scale of things, it is. After humans have fulfilled their biological functions, sex really serves no use but for pleasure.

There is a scale of human sexuality, all the way from asexual to sex addict. I fall well within the norm, thankfully. In this day and age to be outside the norm is becoming a subversive act. Why people feel the need to quash others sexual orientations and sexual proclivities is beyond me. Unless someone is underage or hasn’t consented, I don’t care what other people do or who they love. I’m proud that I am no longer a hot mess. I’m happy that I know what I want, what I like and that I feel unashamed. Humans are, by nature, hardwired to want and enjoy sex. My wiring got a little crossed at an early age. Fifty-eight is not too late to rewire find a new spark.

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hope

I spent yesterday afternoon in a room full of Lyme patients. It was the first time I had been around so many Lyme sufferers. We were all gathered at the Tattered Cover to hear Dr. Richard Horowitz. For those of you who don’t know, he is a demi-god in the pantheon of Lyme doctors. He’s written two books, Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease, and How Can I Get Better: An Action Plan for Treating Resistant Lyme and Chronic Disease. His first book came out in 2013. It was one of the first purchases I made when I realized I had Lyme. I didn’t get a lot of it at the time, and I skipped over parts that didn’t affect me (I had to go back and reread some of those later, as Lyme careened through my body). I slogged through the dense science along with the case studies. And I felt hope. This book covered everything. He believed Lyme patients could get better and even thrive.

Time passed, and I started to lose that hope. Every time I felt like I was getting well, I had a relapse. “I’ve turned a corner,” I’d say. I had, too. Right into another fucking ditch. Hope slipped away because the trajectory of Lyme is not lineal, it’s  a jagged zig-zag. This is not a pity party. It’s an attempt to share how easy it is to lose sight of health.

I knew the book store would be packed for Dr. Horowitz. He is a physician in the truest sense of the word. When his patients don’t get better, he considers this not a failing, but a chance to be a medical detective. His journey as a Lyme guru started thirty years ago, in the Hudson Valley of New York, now one of the most Lyme-infested areas of the US. Hearing his excitement about new protocols was infectious (pun intended). Seeing that many seriously ill people was, in a strange way, comforting. Why do we feel better seeing others who suffer like we do? There’s that feeling of immediate kinship: this person gets it. There is also a less attractive side to this. Several people were in wheelchairs, or had to use walkers. Some of the people looked dreadful. For me, it’s less about misery loves company and more about I’m slightly less miserable than the rest of the company. Shallow, I know, but there it is.

Dr. Horowitz provided hope to the people listening yesterday. Hope may be the most powerful drug there is. Love is also important. People get better for the ones they love. The combination can be potent. I was one of the few ‘singles’ at the book signing (even Dr. Horowitz was part of a couple, he travels with his wife, a Lyme sufferer herself). There were parents and children, boyfriends and girlfriends, and married couples huddled together. I could immediately tell who had Lyme, because I was struck by how protective the healthy person was towards the Lyme sufferer. I have my dad and Katie, but I prefer to battle on my own with Lyme. Well, maybe not ‘prefer’, but that’s the way it is. No, I take that back. I DO prefer to work this out on my own, mostly. I don’t like to be coddled. There was lots of coddling yesterday.

For the life of me I can’t figure out why more physicians don’t view disease the way he does. Something happened to the way physicians practice medicine between the great gains of the early twentieth century and now. Probably not one thing, but several. The one frightening fact he pointed out is the alarming rise in chronic illnesses. Why? What are we doing about it? Chronic illness is crazy expensive on three levels; personally, monetarily, and societally. I’ve experienced all three these last two years and it is not pleasant. The cost of untreated or poorly treated chronic illness is astronomical. One girl, who is now fourteen, got Lyme when she was six. She went to over fifty doctors before she got the right diagnosis. What that must have cost her family, I can’t imagine. She was lovely, though, thankful that the newest pill Dr. Horowitz prescribed was ‘tiny’. I feel her pleasure in that. I don’t want to brag, but I can swallow up to seven large pills at once. Impressive, I know.

Anyway, today I feel better than I did yesterday morning. His message gave me hope, and hope makes me feel better. One caveat: people ask if one can be cured from Lyme. Dr. Horowitz used the phrase “knocked the load down” several times, and never said the word cure. He talked about herbal protocols to “keep the load down” if symptoms creep back. I asked him about that as he signed my book. “Is that the euphemism you use to dodge the question of a cure?”  I asked. He smiled. “For now,” he said, “but not for always.” Hope. It’s a powerful thing.

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body

I like my body. I’ve never quite trusted it, because it was broken when I was seven. I fell out of a tree and fractured my skull. I was in a coma for about a week. It’s funny what you remember about hospital stays, especially when you’re young. I definitely remember the nurses coming in and taking my temperature (they did it anally back then, HELLO!). I I remember the doctor’s name: Dr. Fountain. I remember him sitting by my bed with his watch, asking if I heard the ticking. I don’t remember that my answer fazed me one way or another. At seven, one accepts change easily. I remember my Nanny gave me a Snoopy stuffed animal with a built in radio. We listened to a baseball game together in my hospital room. I went home to a new house, because I managed to fall on a Sunday afternoon at my dad’s new bosses’ house during a relocation.

The whole year after my fall is a large chalkboard with four or five sentences, the rest erased completely. My brothers found a live bat in the yard. My dad held its quivering body in a towel wrinkled by its tiny claws. I had daily headaches and dizzy spells. I practiced on our new grand piano in the new living room. The house was a modern, open ranch with tile floors. I loved to bang out loud, lively pieces. The notes hung in the air and crashed throughout the house. That was power.

The next insult to my body was deeply personal, another kind of power wielded by my brother without my consent. I have never and will never forgive him.

I had a partially detached retina when I was 17. The surgery was routine. However, my horrified parents got to listen to me hit on the poor orderly while I was high on some magical pre-surgery drug. Afterwards, I was rolled into a storage room with a rubber glove filled with ice over my eye. I must have been considered a low risk patient. After that I had many minor and major surgeries, all having to do with my faulty lady parts. That’s all I need to say about that. All told, I’ve had eleven surgeries; four major and seven minor. Great preparation for Lyme.

My mother was a functioning anorexic for most of my life. At the end, she became a non-functioning anorexic, and it killed her. She was 59 lbs when she died. One of the gifts she gave me was a healthy body image. Whether she did it on purpose or not, I am grateful. She taught me that my brains and personality would last far longer than sex appeal. She taught me that a strong, healthy body was the most important thing. These lessons didn’t sink in as easily as I make them sound. I went through a dork phase that was epic (pixie cut, blue granny glasses and braces for buck teeth). I fretted over my looks like most young women. To this day I think my head looks like a potato in pictures. My boobs weren’t big enough. My legs were too skinny. I rarely dieted, however, and always exercised. I abused my body with drugs and alcohol and had lots of sex. But I never quite trusted that I was indestructible.

By the time Lyme hit, I had lots of experience in dealing with physical setbacks, or, let’s be honest, the problems that can happen if you’re female. Endometriosis, ovarian cysts and scar tissue wreaked havoc inside of me for years. It was a relief to have everything taken out. I developed an allergy to morphine and food sensitivities. Lyme was no walk in the park, far from it, but I had experience. I am tough as nails at enduring. I consider my body ‘temporarily offline’ right now, as it has done off and on throughout my life. I’m babying it along, taking special care with diet and rest.

On my worst days, I hate my body, both in appearance (I’m starting to bear a startling resemblance to Mr. Peanut) and performance (another day of aches and fatigue). I tried positive imagery, imagining the billions of little spirochetes, bacteria(s?), and protozoans dying and being swept out of my body. What I usually got was gross negative imagery, of squiggly microscopic creatures burrowing in my brain and eyeballs, teeth and joints, heart and liver. This was a new kind of battle for my body, unlike any other I had endured. I’m almost well now, and my body is the last to know it. I tell my body every day that I am better, I should feel better. So far, the body does what it wants. I still like it though, it’s the only one I’ve got.

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