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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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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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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ogled

I went to Victoria’s Secret with my daughter Katie last week. She just turned thirty. I am fifty-eight.  If you are the mother of a daughter, there comes a day of reckoning, a watershed moment that is not always welcomed. The day men’s eyes slide right past you and land squarely on your daughter. I remember it well. Katie had just turned fourteen and we were happily wandering around Target. A man in his late thirties couldn’t (or didn’t) hide his admiration of Katie. My first instinct was indignation. She’s a child. My second feeling was mourning. Was this the end of my sex appeal?

All women learn that they are objectified and admired by most men, either because they are, or because they aren’t. It is a part of most women’s lives whether they like it or not.  It’s a complicated road to navigate. Most women don’t like to be objectified, yet it is such a part of many cultures that to not be objectified or ogled sometimes feels worse. Every woman has her own stories and has drawn her own conclusions about being ogled. How we react can be a strong indicator of how we feel about ourselves, although it shouldn’t be. Personally, I liked it. A lot. Oh, sure, there are always men who openly catcalled, or took it past the point of simple appreciation. I learned to deal with that in a variety of ways. Katie would have to learn to deal with it, too, whether she liked it or not.

The years that followed gradually inured me to the reality of invisibility to men when I was with Katie. She was oblivious, self-conscious, delighted, and finally callous, the way all attractive girls must become in order to survive the near-constant ogling in everyday life (hey, guys, just because you think you’re being subtle doesn’t mean we don’t notice. We do.). This isn’t about whether we ogle men back. I’m not here to pass judgment on whether or not men should or should not ogle. I’m more interested in my own reactions to ogling. When I was young, I passed through the same phases as Katie—oblivion, self-consciousness, delight, and callousness. For those of us past a certain age, there is a last stop, and depending on who you are, it is either relief or mourning.

I have never lead with my looks, but I would definitely say looking attractive is important to me. As I’ve grown older, I like to look healthy and like I care about my appearance. Katie doesn’t have to care about her appearance. She is young and firm and fresh and lovely, as I once was. It is bittersweet. I wouldn’t trade my hard-earned wisdom and peace for a young body, yet the feeling of invisibility rankles.

I was essentially housebound for a year during my three-year long battle with Lyme disease. Something has happened now that I feel closer to normal. Is it my perception or my appearance that has changed? Or is it neither? I have changed. The sheer joy I feel to be out and about, alive and mostly healthy, has made me visible. That’s when I realized a person’s sex appeal is much more than looks. I’ve always known that, but I didn’t know that as it pertained to me. I’ve gained joie de vivre. Where had that gone all those years before Lyme? I thought I was happy. I worked much harder on looking good. Did being married create a shield to my sex appeal, or did I? I’m now certain it was my own unhappiness at the choices I made, an unconscious barrier of protection from an unhappy marriage, and the unfinished issues I wasn’t ready to face.

Through my experience with Lyme, I have come to believe that you cannot fully heal from a serious illness unless you’ve worked through your issues. I’ll never finish working on my own shit, but I now move through the world joyfully and with an inner peace. The paradox is the less I care about my sex appeal, the sexier I must appear. By that, I mean I am neither seeking out attention, nor shunning it. I dress and wear makeup for me. I often smile at nothing, simply because I am happy, and finally comfortable in my own skin.

At the end of our shopping trip, Katie and I stopped for dinner. We were celebrating her thirtieth birthday, her engagement, my return to health, and just being together. She stared at a young girl who entered the restaurant and sighed. “She has no idea, I wish I still had that body,” she said. Katie is just old enough to understand the bloom of youth is a gift. We both have complicated feelings about being ogled. Men still stare at her first. The ogles I get are more appreciative of my happiness, health and joy, and less frankly sexual. I am fine with that.

 

 

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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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