holidays and opinions

I hate it when people don’t believe what I say. When I say something I don’t fuck around with double meanings or hidden codes. Sometimes I do tell people what they’d like to hear, especially about my health (sure,I feel good right now)  or how they look or feel. This rant pertains to other things. If I say something doesn’t bother me, IT DOESN’T BOTHER ME. Trust me, you’ll know if it does.

The more puzzling question is why people distrust what I say in the first place. There might be some form of communication they learned at an early age that I didn’t get. At any rate, it drives me crazy, both with Lyme and with life. It’s also exhausting to feel that I have to re-explain once again, that yes, this is how I feel.

This spills over into holidays, mainly because of our obsessive mania that everybody “have a good holiday” as if there is a one-size-fits-all formula for that. All holidays are loaded with baggage, but for most of us, none more than Christmas. Over the years, I’ve dropped off celebrating most other holidays. Easter? I’m atheist, so that one was easy to let go. July fourth? Other than deviled eggs, not much I miss one way or the other.. If we had children around, things might be different, but that’s a whole other blog topic. Katie’s theory is that if you don’t have happy Christmas memories during your childhood and teens, you spend the rest of your life chasing the dream. She may be onto something here.

When I was little, holidays were celebrated, but not excessively so. I could always count on getting a few things that I really wanted. We had cookies, and a Christmas dinner, but nothing over the top. I remember feeling happy and loved. As the person in charge of holidays while Katie was growing up, I tried to to the same. I must have done that well, because Katie has mostly happy memories about Christmas, and for that matter, all holidays.

Because I was the one in charge of holidays, I got to do what I wanted. That may be the key to having good ones. I took great pleasure in cleaning the house and setting up the decorations. Aside from arguments about lights and the excruciating process of watching the ex pick out a tree (we solved that one by going artificial), I was free to pick and choose the rituals I enjoyed (midnight mass? No thanks. Waiting until after breakfast to open presents? Nope.) I continued lots of traditions long past their childhood origins and my divorce simply because I liked them. Katie enjoyed the fruits of my labor, but part of that was I didn’t make her do them.

The onset of Lyme brought about the biggest changes in my celebrations since my twenties, when I moved out and set up my own household. Fortunately for me, those years dovetailed with years that Katie worked every holiday. Kennels never shut down. Dogs need to be fed, medicines given, and kennels cleaned. Katie volunteered to work those days and we adjusted to my being ill and her working holidays. The first year after I was diagnosed, I spent Thanksgiving in my pajamas and robe, too sick to go anywhere, cook, or even care. I made Thanksgiving dinner a week after Thanksgiving, and it tasted exactly the same as if I had made it on Thanksgiving Day.

That year, we had Christmas two days before. I managed to get up the Christmas tree and wreath, but it certainly wasn’t a typical Christmas. Once again, the presents brought as much joy as if we had opened them Christmas mornings. Not having up all the decorations didn’t diminish the joy of seeing the Christmas tree lights and the wreath on the door through the season. It was a revelation. After that, we just rolled with it. A few years there were very few presents, just because it was too much for me to shop and wrap,. Instead of being sad or depressed, I found I liked the freedom. To be able to watch movies in my jammies and not worry about pleasing anyone but me was exactly what I needed when I was so sick.

Now I can enjoy Christmas however it turns out. I am very fortunate to have a family that wholeheartedly endorses this. Dad doesn’t care for any holidays, including his birthday. He suffers through them to make the people around him happy. There is a place for this, just as there is a place for respecting his wishes. If someone close to me really loved celebrating July Fourth, I’d make potato salad, deviled eggs, and ham and enjoy doing so.  I’d go see fireworks and get a thrill out of seeing them. On Halloween, I’d happily decorate the porch and hand out candy. I wouldn’t go to church for Easter or any holiday, but you get my drift.

Since Lyme, I’ve come to embrace my non-holidays. I feel positively smug when I hear how exhausted people are from endless rounds of shopping, parties, and family obligations. If you love doing everything and everybody’s happy in your world around the holidays, good on you. Enjoy them and recognize that there are lots of people who are perfectly happy NOT doing all those things. Katie, Dad and I give each other things all year long. We go out to eat when we feel like it, and I’ll cook a nice dinner whenever I want to.  And please, when someone (ME!) tells you something doesn’t bother them, try to believe them.

 

 

 

 

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curmudgeon

Is there a word for female curmudgeon? The formal definition is a “bad-tempered person, especially an old one” and is unisex. I’m not one yet, but I’ve been flirting with the possibilities of allowing myself the luxury. This would require energy, maybe more energy than the daily decision to find something good about the day. That is the choice these days, isn’t it? I don’t know about you, but most days find me on a roller coaster of highs and lows that I’d rather not experience. I’m more of a lazy river kind of gal, and yet the universe has strapped me onto the Tower of Terror.

Pre-COVID, I would have done some the things that kept me cheerful while sick with Lyme: museums, movies, visiting friends, and the occasional trip. This is by no means the whole list, but it’s the one most affected by COVID. Joni Mitchell had it right, “you don’t know what you got ’til it’s gone.”

I have deep, strong inner resources. I’ve had to, with the challenges life has thrown me from an early age. This isn’t the place to get into that, but those of you who know me know that no matter what, I manage to see hope and joy in anything. Lately, though, curmudgeon-ness, or at least the freedom to let oneself become a grumpy hermit, happier alone than with people, is quite tempting. There is a word for this. It’s not even German! Apanthropy: An aversion to the company of men; a love of solitude. I suppose we could quibble about the use of ‘men’ in this sentence, but you get the gist. That’s what I’ve been experiencing, and it’s blossomed under the rich fertilizer of COVID.

The main problem with this scenario is that I’d actually have to say really shitty things aloud. I think this is one of the requirements to becoming a full-fledged curmudgeon. It could be this is why curmudgeon is associated with men more than women (don’t fight me on this. You know I’m right).

Although I care much, much, less what people think of me, it is not in my nature to hurt people, whether they are strangers, friends, or family. This may prevent me from earning the title curmudgeon. I’ll never say never, though. I could become one of those mean old ladies who says exactly what they think.

The pandemic has been hard on virtually every person I know. It doesn’t seem to matter if you are angry at having to wear a mask, or sad that you have lost loved ones, or sick of being isolated, or missing loved ones. I’m not sure any of us can comprehend what we’ve endured yet. I do know it has made me less tolerant. Things that would just slide by irritate the hell out of me, and it doesn’t seem to matter who or what it is. I’m positive I irritate the hell out of people, too. Our national zeitgeist is one of emotional exhaustion. I just had a head start on everybody else.

Most people are new to social isolation, being alone with themselves, or being forced into sharing close quarters with the same people for days, weeks, months on end. Our ability to move, to go anywhere is one of the privileges of living in a wealthy democracy.

Six years ago Lyme forced me to re-evaluate this privilege, but I was no stranger to being alone. I have always been content to be alone, and as the youngest child, that is a good thing. Both of my brothers were out of the house by the time I turned thirteen. My cousin Ginger lived with us for a few years after her parent’s divorce, so it was the two of us for a little while.  From my sophomore year on, Mom and dad worked full time, so I was alone before and after school. I reveled in the  solitude, happily eating dessert for breakfast, blasting my music and dancing with no one to bother me. I was never afraid, because at that time we had Charlie the Great Pyrenees who would have killed anyone who threatened me. I don’t say that lightly. Anyone who knew me then and came to my house could tell you how scary he could be.

I’m sure I was lonely at times. Who isn’t at that age, especially if it was a Friday night and you thought everyone else but you was out having a magnificent time. But even then, I had things to do. I read voraciously. I listened to music constantly. I tried sewing occasionally, and I baked things when the spirit moved me. I didn’t mind my own company back then and I don’t mind it now.

Then I got Lyme. Or rather, I’d had it for over a year and didn’t know it. When I started treatment, I was so sick I barely noticed my isolation. The first three years were the worst. I’m sure I lost friendships over this period, because virtually all of my energy was consumed with taking care of myself. I may have been a little prickly during this time. Really, who could blame me? People had no idea how I could be so sick for so long. Reconciling myself to chronic illness and trying to educate the people around me made me extremely grumpy.

And I grew used to being alone. Not just, you know, a day or two, but days and weeks of alone. I anticipate that the biggest problem for me in life after COVID will be returning to a social life, as in, will I want to? It’s hard to imagine the anticipation of going to, say, a new exhibition at the art museum, or a concert at Red Rocks. I’m pretty sure I’ll be excited over these things once again, I just can’t quite picture it. For now, though, I’ll put my scanty reserves into holding my tongue and trying to see the positives.

 

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bumbling

A new chapter, turning over a new leaf, rising from the ashes, rebirth, starting over; the sheer number of maxims boggles the mind. The facts are usually the same. Person has a setback, person begins life with a new purpose. I might argue this is one of the most basic facts of life. It smacks of redemption, courage and strength. There are many levels of this type of renewal. From “tomorrow I’m going to start to get to work on time” to “I’m going to recover from cancer and live my life differently”, we all understand the concept, just as we realize the difference in magnitude.

For me, my own personal rebirth begins with “the good news is I’m nearly well from Lyme disease” and “the bad news is I’m nearly well from Lyme disease.” How could getting well be bad news? Let’s look at the word ‘nearly’. Being nearly well means I can’t quite begin a new life, but I have to try anyway. ‘Nearly’ means I will fail often because I will try to do either too much or not enough. ‘Nearly’ means still picking and choosing where to put my energy, and getting it all wrong. ‘Nearly’ means napping almost every day, not because I want to, but because I have to. ‘Nearly’ means doing work that is not challenging just in case I have bad days where my brain isn’t functioning.

There is no other solution than to carry on. I make modest daily goals in hopes that one day, I will be well. On good days, I get everything accomplished and feel like perhaps I’m getting my life back. On bad days, I have to decide what to let go and find a way to be happy about it.

I’m still trying to figure out how to explain that I’m mostly well. There are days when I think, I’ve got this. Where I make a new Plan A. Those are the days I forget I have Lyme (Had? Another thing about ‘nearly’—is it ‘have Lyme’, or ‘had Lyme?’). Other days, I am overwhelmed to the point of giving up. That’s when I think about selling the house, moving into an RV, and disappearing.

On one of those good stretches, I decided to redesign my web page. After all, I am no longer ‘finding joy while living with Lyme’. Surprisingly, figuring out a new tagline and a picture to represent ‘life after Lyme’ was harder than the nuts and bolts of redesign, or writing this post. Because, who the fuck am I now? I was already changing when I got sick. I should view Lyme as a delay, but that wouldn’t be correct. Lyme changed me. It changed my priorities and what I want for the rest of my life.

It took a discussion with Katie to figure out what best represented my life. The tick isn’t gone. The tick will never be gone. It is crystallized forever inside me, slowly fracturing into a million pieces as I struggle to become whole again. After we figured that part out, the tagline became easy. I don’t think bumbling is too harsh a word. I am bumbling, because I am still changing. Maybe that’s what ‘nearly’ is.

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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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relentless optimist

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

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

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

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

 

 

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