comfort

This blog was originally about losing my mind and being sad when I got well enough to realize I lost my mind for a good long while. There is little doubt (at least to me) that my brain is returning.  I kept veering off the subject of crazy, though. and into grief. I had no idea that I was and am grieving right now. Grieving is  different than depression. Grieving the loss of something partially returned is different than mourning the loss of a loved one. Nonetheless, grieving overtly implies loss, and only now can I see what I’ve lost in the last three years. Only now that I am returning to health that I have the energy for such an indulgence. Perhaps ‘indulgence’ not exactly right—it seems unavoidable—but why can’t I use my returning energy for something useful?

I haven’t had a huge amount of loss in my life. Three of my grandparents died before I was thirteen. My Nanny died when Katie was young. I mourned, but I didn’t know profound loss until my mom died. That period of bereavement morphed into an outpouring of grief for all the hurts in my life. What purpose does this serve for humans? It’s never fun, always difficult, and the end result is, what? A blank exhaustion, a feeling that there are simply no more tears to be shed. That particular part of the journey is different for everybody.

What I really want to know was why I spend so much energy on grief. There are four stages of ‘normal’ grieving: Numbness/disbelief, Separation/distress, Depression-mourning (are the two inseparable?), and Recovery. There is something called ‘complicated grief’ (wtf? is that different from ‘simple grief?) and ‘infinite loss’. I hate having my journey so neatly compartmentalized, so pedestrian. On the other hand, knowing this is normal is comforting.  I found myself feeling much better just reading about  ‘Perpetual complicated grief’, aka, constant sorrow.

I am not a woman of constant sorrow. There are times when an inertia settles over everything, and that’s unpleasant. The grief is like a low-grade fever, not incapacitating but definitely a factor in my everyday life. Grief from chronic illness is different from acute or terminal illness. Those illnesses have  a definite end, one either gets well or one dies. Chronic illness is a series of losses, unending, and multiple. These are known as infinite losses. Great. Constant sorrow over infinite losses. Sounds Sisyphean, and it is.

The most difficult aspect of chronic illness  and grief is girding up for the next round. As I write this, it (finally, DUH!)occurs to me this is why I am continually battling exhaustion. This is why I nap daily and sleep eight hours a night. Maybe grief serves as a reminder to my body: this isn’t over, you need to rest, don’t get too excited, now. As if I need a reminder.

Sometimes I wonder when this (Lyme and grieving) will be all over. More often, though, I remind myself that the weight of my illness and grief are the only things I get to determine. So I bumble on, wrestling with keeping both loads as weightless as I can, while still trying to live. I need to be smacked in the face to recognize what is often right in front of me. Putting a name on what I am experiencing is what I need to recalibrate. Which brings me to comfort. Anyone who has gone through this process understands the need for comfort. Respite might be the better term, but comfort through the process is elemental.

I have time-tested activities that provide comfort to me. Some are mundane, like cooking and cleaning. The results of both are deeply soothing because they are concrete reminders of my usefulness and skills. Movies. Cocooning in a dark theater and entering another world, no matter how grim, is essential. Music. Because singing loudly and badly with your favorite songs never gets old. Walking the dogs. No explanation needed. Playing pickle ball. I love the game and the people. I don’t want to brag, but I’m popular with the over-65 men. Writing. For some reason I love spilling my guts to everyone. After the first time, it gets easier. Lifeguarding. Any work is better than not working. Besides, I like lifeguarding. I think deep thoughts staring at the pool.

Sometimes it’s hard to recognize whether I’m grieving or relapsing. A friend who has battled a chronic illness for years told me that when he’s having a good day, for whatever reason, he lets himself enjoy it. Does whatever he wants and doesn’t feel guilt AT ALL. I tell myself to do that, but it isn’t easy. I have trouble gauging how much I can handle, and tend to beat myself up when I do too much. Maybe when I get to the recovery stage I can relax and enjoy life fully.

Where does all this grieving and ruminating leave me? A little bit stuck, I guess. I am going to have to trust in myself (always dicey) and have faith that one day grieving and healing won’t be so hard. Meanwhile, I keep busy cleaning, resting, lifeguarding, writing, vegetating, playing pickle ball, walking the dogs, working from home, and above all, trying to get to that zen space of enjoying myself guilt free.

ps I started this blog before Las Vegas. The sense of grief over events in the world today is a daily battle. Comforting and being kind to yourself is more essential than ever.

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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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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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rebellion

Getting completely well is harder than I thought. I am so close to the end yet farther away than ever. This is where I should get some kind of power surge, both mental and physical. I am sputtering. No surges here. Instead, my head and body seem united in a small rebellion. Anyone who knows me well has seen how hard I work at getting better. Clean eating (and by clean, I mean no gluten, dairy, sugar, processed food or caffeine. Go on, try it. I dare you), early bedtimes, naps, gentle exercise, mindfulness, and strict adherence to taking my medications. I’d give myself an A+ in this, until now. Now I find myself skipping my medications. I ate dairy the other day. It did not go well. I had half a drink on a date, and it was delicious (it was also a great date. I want to see him again, see if the chemistry holds, but Trump fucked that all up). The alcohol didn’t affect me as much as I thought it would, but I had maybe half a shot of a Rusty Nail. God, I love a good Rusty Nail on a cold winter’s night. I eat too much or too little. I eat chips for lunch sometimes.

Maybe this is to be expected, a more realistic path than the monastic life I have led for the past two years. Maybe I am frustrated, and tell myself “what the fuck, it doesn’t matter. After all I’ve done, I’m still sick.” This is a dangerous time for me. I have to be able to see the light at the end, and it’s not there. Why is healing so hard? Why does Lyme have to be so goddamned hard? 90% is no better than 50% for living a life. In some ways it’s worse, because you get a glimpse of a normal life again, but can’t quite do it. In a sick way (sorry, bad pun alert!), nodding off on the sofa was preferable, because I had no choice in the matter.

How did I handle this in the past? If I look back, I always hit this stage at some point post-surgery. After my ACL replacement, I hit rock bottom around three weeks after. My ex, an old hand at taking care of me after surgery, knew my pattern well. He brought me a dozen oysters and a bottle of Pouilly Fuisse (or fussy pussy, as it was known in our house). It helped tremendously. Lyme is different. I get a string of days where I think this is really it, this is the end. I’m going to feel great. Then I don’t, and I don’t know why. This turned into a bit of a whiny rant, hasn’t it? I don’t care. And that is at the heart of my rebellion. I think I am mentally tired of being positive. I also think the political turmoil that is Trump has been soul-sucking and spiritually exhausting. I’m going to have to find a way to tap into some good juju.

Update: I had an acupuncture treatment this morning. There are reasons I don’t feel well, and they are spelled h-o-r-m-o-n-e-s. Ha! Held hostage by my body once again. By the way, acupuncture rocks. It’s hard to find the words to describe the way it feels. For me, after the initial shock of some of the needles, (if your liver is flaring up, the needle zings as it goes in, and not in a nice way) it’s like a warm electric current flowing through my body. She cradles my head and does acupressure up and down my spine, neck and hips. It is heaven. Oh yeah, she said relax, give yourself a break, you’re only human. I think I’m gonna be alright.

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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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fractious

I am scratchy and irritated these days. Is it the nature of healing? Is being constantly annoyed a sign that I’m getting better, and if so, why? You’d think I’d be all happy and excited, and I am, but I’m also fractious. I curse at all the drivers on the road, loudly and often. This isn’t new, anyone who has been in a car with me knows my predilection for cursing at other drivers. What’s new is the vehemence and frequency, the lack of control I have over my rage.

One of the symptoms of bartonella, the last co-infection to die, is irrational anger. I do have that, and I don’t like it. This fractiousness is more an angry restlessness at my life, what I’ve lost and how much farther I still have to go before I’m well. It’s also frustration at how hard it is to pick up your life again, especially when it dawns on you that you can’t go back to what isn’t anymore. So now I have to move forward, whether I want to or not. It’s scary, and I don’t like scary. The whole thing exhausts me!

It’s also getting harder to comply with the Lyme protocol. I don’t like answering questions about how I am. People look at you like your doctor is exploiting you, or he’s making up your treatment as you go along, because it’s always something. That’s Lyme disease. In a sense, he is making up my treatment as we go along. Every case is different, because every tick bite is made up of different bugs. We get misdiagnosed, under-treated (2 weeks of Doxycycline? Please, bitch!), and denied treatment by insurance companies who believe that anything over 30 days of treatment is uncalled for. No wonder I am fractious. It’s a miracle I’m not starkers. Wait…oh yeah, that symptom is mostly over.

In a way, I like the irrational anger. I am not prone to irrational anger. It’s almost fun to blow up, at least in private. I can now imagine what angry people feel all the time, the release of…what? I’m not sure I know what is being released, only that something loosens inside when venting, and the pressure backs off a little. To turn this rage on another person would be unthinkable to me, though. I contain myself to screaming at nothing. Once, however, I screamed at the dogs. I NEVER do that, even though I’d like to sometimes. That one scared me more than anything.

There is a lot of yelling going on in the world today. A lot of anger and distrust. I will not be a part of it. Listening to an angry person is a soul-sucking endeavor. A part of this fractiousness is an impatience with the world today. I don’t have the time or energy to put up with toxic people. At the same time, I have to participate in the world, such as it is today. I often wonder what we will call this new era. The Age of Hypocrisy? The Age of Rage? Whatever history dubs it, it won’t be flattering, that’s for sure. So my small part will be to keep my grumpiness to myself. It’ll be tough. Curse words will be used liberally while I talk to myself. Cleaning, music and hiking will be my anodynes. I hope. If any of you catch me bitching, slap me, please.

 

 

 

 

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confinement

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

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

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

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

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

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

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