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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curses

I curse. A lot. Recent studies indicate cursers are smarter and more honest. Yes! Let’s go with that. I can’t remember the first time I heard someone curse, or the first time I cursed. I do remember cursing with my friends on the bus, the words spitting out of my mouth. Curse words are often sharp, their sounds like punches. Shit, fuck, damn, they all have a nice staccato sound. The longer words are melodic, rolling off the tongue: motherfucker, sonofabitch. Is that what I liked about cursing? Or was it the lure of the forbidden? It’s been too long for me to tell. What is certain is that I took to cursing like Donald Trump lies. Like Trump, now I can’t seem to help myself, even if I wanted. The curses burst out, a sort of verbal tic. I can rein it in for a short period of time, but then something usually happens.

There are instances where, to me, curses are not only appropriate, but called for. When I was in the sixth grade, I was with my mom at the stable. I led my horse, Duchess, out of the stall to groom her. She was a crafty old mare, and she liked to push me into the fence or the walls when I made her do something she didn’t like. This time there was a nail protruding from one of the boards, the curved tip angled perfectly to snag the tender skin above my bicep clean through. “Damn!” I said, a perfectly reasonable response to being caught like a fish on a hook. “Damn, damn, damn!” It hurt, you see. I can so clearly remember my mother’s response. “Melissa! There’s no need to curse!” If I had the presence of mind, and the balls, I would have said what I was thinking: if ever there was a need to curse, this was it. So, being hurt. When else? Driving. I could no more drive without cursing than I could go without food and water. Other drivers drive me to cursing. Sorry about the pun, but really, if I wasn’t cursing, I’d be apoplectic with rage. Cursing relieves the pain of a stubbed toe or bacon grease burn. Saying ‘fuck’ over and over is my pain om. Cursing is a handy skill during sex, too, the dialectical cousin of talking dirty. I curse to express my joy, as in “I’m so fucking happy right now.” I could say “I’m so happy”, but would you know how happy I really am? I think not…

What about the children, some might ask. I say children need to learn when it is appropriate to curse. My mom, a natural born lady, cursed twice in my lifetime that I can remember. My dad wanted to curse around us kids. He chose not to, so he made up words. ‘Poodletoot’ and ‘razzlefratz’ were the two I remember best. I use both words to this day. I asked Katie if my cursing affected her, and did I curse more than her. She laughed and said she loves to curse. She also said she curses way more than me. Take that anyway you’d like. Maybe it’s in our gene pool. She also said she curses when she’s sad, mad, hurt or happy. I didn’t ask her if she curses during sex. TMI.

I know, I know, some curses take the Lord’s name in vain. I understand that. I’m also sensitive to others and respect their wishes when I’m around them. However, those words hold no power over me, because I’m not religious. It’s like learning curse words in a foreign language, the childish delight partly because the words don’t mean anything to me. There are some curse words I don’t like. C*@t that rhymes with punt is reserved for the lowest of the low for me. I have some perennial faves, but I love it when I hear a variation on a classic. ‘Asswipe’ became my go-to word three or four years ago. I’m not sure why, seemed right for the times, I suppose.

This may be the first blog in a very long while that hasn’t had something about Lyme disease. To me, this is YUGE! Maybe I am getting used to my new normal. I can’t remember if my cursing habits changed at all while I was really sick. I wasn’t driving and I was alone, talking to myself, a good deal of the time. It wouldn’t surprise me if I cursed myself out. Wait, I think I did curse, especially when I lost my mind. I remember calling myself a stupid bitch any time I did something irrational, which was quite often.

Good cursing is an art. I get a thrill when I hear a well-placed curse word. I like the way curses enhance the impact of a statement. I will continue to curse, enthusiastically and vociferously. I’m also going to continue to buy in on the studies that say I’m smarter and more honest, even if they’re total bullshit. Because that’s the way I fucking roll.

 

 

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acceptance?

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

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

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

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

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

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

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lovesick

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

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

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

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

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

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

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almost

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

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

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

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

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

 

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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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