RomComs

I can always tell when I’m feeling better. First sign is a manic frenzy to get my life “back on track”. I play catch-up and start to think about the future. That instantly brings on depression, anxiety and panic, so I try to balance it out by watching romcoms. I like romantic comedies. A LOT. The smarter and funnier the better, but I’ll settle for a cheesy Hallmark Channel movie, too.

I’ve yet to see one where the chronically ill hero finds the love of their life. That’s a plot that could go wrong in so many ways. Meeting another chronically ill partner? Oh, great, two sick people shlubbing along together, finding happiness in spite of barely living. Or one person “saves” the other, making life worth living. Yechhh. Or maybe the sick one keeps their illness a secret, but when it finally comes out, the healthy one finds they love the person no matter what. Right. That’s a totally true story, happens all the time.

The problem with all these scenarios is the chronic illness. Like a third wheel, it’s there, along for the ride whether you want it or not. I don’t know what the dynamics are for stable couples when one finds out they have a chronic illness. I’m sure it’s the same as everything else: some partners bail, others rise to the occasion, but most probably grope along blindly, trying to figure out what to do as problems arise. I don’t have that right now. I have Katie and Dad, of course, but they are family, so far from a romantic partner that it’s no comparison.

Well-meaning people in my life worry that I’m not happy being single. Well, I’m not always happy, but that doesn’t have anything to do with not having a relationship. Maybe they can’t imagine being alone in their own lives, so they project their own fears of being alone onto single people, . In many ways, most ways, in fact, I’m much happier alone. For some people this is simply impossible to understand, especially people who know that I love men and flirting. It’s true, though. How much of this is due to Lyme and how much is due to personal evolution is difficult to discern.

Romcoms often bring up lots of emotions for me after the ‘high’ from the always happy ending, most of them cynical. I mean, at the heart of every romcom, regardless of how the writers frame the story, lies the fantasy that there is true love for everyone. That’s not true, it’s never been true. Is it a modern promise that can’t help but make most of us disappointed? Or is the modern standard so high that romcoms have to exist to keep the fantasy alive? Or maybe they exist in the same territory that fairy tales and romance novels; they satisfy our yearnings to be loved.

That’s the thing people pity single people for, isn’t it? “I just want you to be happy” is code for “I want someone to love you”.  “I don’t want you to be alone” really means “I want someone to want to be with you”. It doesn’t matter how fulfilled your life is in every other area, the message is  loud and clear: you can’t be satisfied until you have that person. In the most primitive terms, it’s biology at work, making sure we procreate and continue having little humans to populate the earth. I’m certainly long past that stage. I’m in the stage where I’m supposed to be enjoying my grandkids (I’m not sure I care about that, either. Katie has never wanted kids), and romantic love is a comforting memory or a real stroke of luck.

I think I like romcoms because they always have happy endings. They often start with one or both protagonists going through the worst time of their lives, followed by the soul-cleansing moral journey of discovering what is important in life, and finishing with the satisfying message that if you make the right choices and get your karma straight, you’ll be rewarded with true love. Just writing it down makes me realize how ridiculous the whole premise is. And yet I still come back for more.

The pay-off is catharsis, a feel good moment that cost me nothing. Since my Lyme disease isn’t going anywhere soon, I need an escape that doesn’t involve alcohol, physical exertion, money, brain power, or too much effort. I tend to go through phases of feeling like I want someone, but not so badly that I’m willing to, as they say in romcom vernacular, “put myself out there”. In truth, I don’t have the time or energy to put into anybody else but myself and I am a-ok with that.

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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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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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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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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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intuition

I run hot and cold on trusting my intuition. There have been times when I know down to my bones that I am doing the right thing. Other times, I waffle, unsure if I can trust my gut feelings. Intuition is a slippery beast, a decision based on feelings, without evident rational thought or interference. I borrowed the last part of that sentence from Merriam-Webster. Rational thought is considered far preferable to intuition in our linear Western way of thinking. I always get into trouble when I try to apply logic to intuition. The best case scenario is one where logic reinforces my intuition. As if that ever happens.

There’s another dimension that I wouldn’t have seen at first, if my friend Morgan hadn’t pointed it out. She is a fellow lifeguard, a debater and one smart cookie. The monkey wrench is what I want or need. How many times have I ignored my gut feelings because I wanted or needed something? Or thought I did? A helluva lot more times than I care to admit. So much, in fact, that at times I have lost faith in my ability to intuit. After all, I can’t seem to stay married, my writing hasn’t set the world on fire, and I am struggling to define a new life. That is not a great track record.

On the other hand, I have a circle of fabulous friends, a close relationship with my daughter and dad, and a stable life. Dating is…interesting. It is as much about who I am as it is about finding the right person. I’d argue that figuring out me is harder than finding the guy, but so far, the race is neck and neck. How much can I trust my intuition on this front, especially in the age of electronic courtships? Can I read between the lines and see what is, or is that placing a layer of both logic and want over the whole thing? Or am I overthinking everything?

Words can be arranged to present whatever I want to the other person. I can make myself a far better person with words. So can he. So can anyone who is a wordsmith. I can think about what I want to say, and there are no nonverbal signals to agonize over. On the other hand, (I always feel like Tevye in Fiddler on the Roof when I do this…) sometimes the distance allows for a candor that would be hard to achieve face to face. I think texts and emails are epistles in hyper-speed. What would Jane Austen have done in modern times? And why in the world would I sometimes prefer texts and emails to a real live date?

It’s not a preference, but a reality. I don’t go out and simply meet someone based on their picture and a few paragraphs of bland description. I test the waters with words first. Some men are not writers and they drop off the radar fairly quickly. Others are terrific writers, but they are too this, or not enough that. The few that make it through that gauntlet get a face to face. This all sounds brutal, and to some extent, it is. Fortunately, aspiring writers have tough hides. I know now that some rejections are personal, but most are not.

Not sure how this turned into a dating blog, but I do know how Lyme ties in. I spent a lot of time denying my intuition. If I had trusted it, I would have demanded a thirty-day course of Doxycycline the minute I showed flu-like symptoms after my tick bite. I did not. I spent a further year ignoring and denying the strange symptoms that cropped up: tingling in my hands and feet, bizarre aches and pains in my joints and muscles, eye problems, a sore throat, head and neck aches, etc, etc, etc. My dad and Katie urged me to fly to New York to get a diagnosis. I did. I cried when the doctor confirmed what my intuition had told me nearly fifteen months earlier.

Once diagnosed, I made it my business to read everything I could on Lyme. Then I made it my business to trust my intuition. I chose not to have insurance (far easier than you might imagine, and incredibly freeing). I am in charge of my treatment, in collaboration with my Lyme Literate MD, who embraces the whole body approach to illness. I take pharmaceuticals, because I have to in order to kill the three bugs industriously multiplying in my body effectively. I do acupuncture, because it relieves many of my toxicity symptoms. I take many herbs and supplements, because they add subtle, real support to my sick body. I don’t eat dairy, gluten, or sugar. I don’t drink alcohol or caffeine, because all these dietary changes keep my body from being inflamed. I don’t care what other people do, I trust my intuition that these are the right things for me.

I’m going to take this newfound confidence in my own intuition and apply it to dating, writing and life in general. I’m working on not putting my wants and needs first, or applying too much logic into the equation. I will not overthink. I’ll have to give that some thought. Shit. That one’s gonna be a problem.

 

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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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relentless optimist

It’s high time I started writing about my life and Lyme disease. There’s more to life than Lyme, and there’s more to Lyme than most people know. My experiences are depressingly familiar to anyone who has been misdiagnosed, and then diagnosed with Lyme disease. I’ve lost nearly a year to Lyme, a long slog in which there were no guarantees that I would ever be well, or that the medicines would stop making me so sick.

Before I go further, I suppose I must define how sick I was. The clearest measure has been what close friends and family have told me now that I’m almost back to normal. “It was bad, really bad” was a phrase I heard over and over, from my dad, my daughter, my close friends in Denver, and a two close friends from Minneapolis and New York who saw me during this time. I don’t have a handle on this, I was too sick to notice how the hours, days, weeks and months slipped by. I do know that I marked my days by the most minimum of measures: medicine, food, pets, and more medicine. A good day meant getting up, making the bed, and doing the mundane chores that make up a life: grocery shopping, cleaning the house, doing laundry. It was as if by doing those basic things I wasn’t as ill as feared. But I was.

Now I smile when I wake up. I don’t lay there assessing how I feel. I get up, get my coffee and face the day. I still take medicine, and I still have bad spells. That’s okay, what’s harder is re-entering my own life. It’s like I’m rusty at living. Interacting with bureaucracies, handling schedules and work and play, they all seem more difficult than they should be. What comes easy is waves of joy. Joy that I have emerged, mostly intact. Joy that I have people who care about me in my life. Joy that I can drive myself wherever I want to go. It is the simple things. Sometimes the simplest things are unappreciated until you can’t do them.

A friend of mine, a curmudgeon of the first order, once called me the ‘most relentlessly optimistic person he’d ever met’. I chose to take this as a compliment. Things this blog is NOT about  include the science of Lyme, a catalog list of my symptoms, and whining. There are several fabulous sites about Lyme, http://ilads.org/ is one, https://www.lymedisease.org/ is another. I am interested in how having a chronic, serious disease has changed me, for better or worse. Often, when I was having a bad day, I imagined myself on a self-imposed pilgrimage, where my only job was to contemplate my past, present and future. This is how it turned out.

 

 

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