Stalled

I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’.  After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.

It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.

It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.

After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.

Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.

For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.

However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff.  It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?

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Katie

I discovered two things about myself the day Katie was born: I would die for another person, and I would kill for another person. That a love so fierce could spring up inside of me was a surprise I think no new parent can anticipate. I’d been waiting for her my whole life. Why have I not written about her until now? I suppose I felt that we’re far too close for me to be objective. Then it occurred to me. I don’t have to be objective. She is the center of my universe. Anyone who has known me for even a short time knows this.

Sometimes I don’t know why I love her so much. She’s fractious, strong-willed, and completely uninterested in pleasing me. Within hours of being born, she was kicked out of the maternity ward for disturbing the other babies. I was amazed when I heard other babies crying. They sounded puny compared to the robust shrieks that Katie produced. The only times she wasn’t lustily demanding attention were when she nursed or slept. Katie was a world-champion sleeper and eater. She weighed 26 lbs at six months. She took naps until she was seven.

Katie is an artist. She would not take direction or classes. A wise art teacher told me to buy her supplies and books and leave her be, so that’s what I did. Sometimes I think she is part mermaid, part fish. She took to water like, well, a duck. That was her first word, at seven months. She hasn’t shut up (at least to me) since. She drew this picture when she was five:

This is how she saw herself, even then. She loved animals from the time she was conscious. Once, we went to a pioneer farm outside of Houston with my parents. While we weren’t looking, two-and-a-half-year old Katie was found hugging a sow who weighed at least 400 lbs. The farmer was apoplectic. Katie was thrilled.

She is one of those lucky people who knew she wanted to work with animals or make art from a very early age. She has never deviated from this, and today she is working to become a graphic arts designer for a zoo. I don’t know where these traits came from. I am not artistic, neither was her father (There are reports that this came from an uncle on her father’s side, but no one is sure, because that side of her family is shrouded in secrets and mysteries.)  No one is obsessed with animals. My side, of course, is a blank. We don’t know what my aunts, uncles, or cousins love because I’m adopted.

I think this was why her birth had such an impact on me. She is the only person in my world who looks, laughs, and talks like me. She gets me in a way that is primal and instinctive, the same way I get her. I can’t judge how I was as a mom. I made many mistakes, I know this. I also know that I did some things right. She knows I love her and accept her for who she is, no matter what. There were times when it might have been easier to crush her spirit to get her to do what I wanted, or to make my life a little less difficult. My intuition told me this was not the way, it would never be the way.

There were, as expected, many rough patches. The usual preadolescent angst made her snotty and dismissive. A major upheaval in eighth grade damaged and delayed her teen years. She understands #MeToo, just as I do. She left home for seven years, a necessary time to grow. She returned when she was twenty-five. I recognized she had grown, but my ex didn’t. They have long been oil and water, and as she’s gotten older, they have started to figure out how to have a relationship.

We live together now, in a house big enough to give us our own space. We prefer living with each other. There are never arguments about much of anything. Someone does whatever needs to be done. Oh, sure, we bicker sometimes, and sometimes get frustrated with each other. We’ve reached that stage where she is right about 90% of the time, damn it! It does work, though, mainly because we both need a lot of space.

When I got divorced, and later, after I was sick with Lyme, Katie has risen to a true equal. She has taken care of me as I took care of her. We will always be mother and daughter, but we are also two single women who are friends. Quirky, loyal, artistic, quicksilver, and most of all, herself, I will always love her more than any other person on earth, unless she decides to have kids. I’m not holding my breath, and it won’t matter one way or the other, because like I learned from my parents and she is learning from me, I love her anyway, and all I want is for her to be happy.

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toil

It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.

We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.

Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.

I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!

I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.

I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.

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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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dad

Yes, my dad is alive and kicking. I want to take the opportunity to embarrass him while I can. It’s not often we get our own personal heroes, but I have one, a fact that has become even more emphatically clear during my struggle with Lyme. Dad and I are extraordinarily close, our relationship uncomplicated, unlike the relationship I had with Mom. Maybe that’s the nature of fathers and daughters, but more likely it’s because our personalities simply mesh. His 89th birthday is next month. He hates his birthday. His office once threw him an unbirthday party because he assiduously and purposefully withheld the date for years. He is going to kill me for writing this. I know it. That’s okay, Dad. You know you love me.

I was adopted on the sixth day of my life. I didn’t know until this year that mom and dad adopted me because I was a “hard to place” child, because I am half-Hispanic. This fact rattled me a bit. Hard to place? Moi? That’s because Mom never shared this tidbit with me, and I don’t think it ever occurred to Dad to even mention it, until I asked.

Dad was raised in a world of women. His dad traveled for work, and eventually divorced his mom when Dad was twelve. Dad credits his decidedly egalitarian views towards women (an anomaly for his generation) to this upbringing. I realized he was different from a lot of other dads early on. Other kids weren’t canoeing with their fathers. Other kids weren’t playing ping-pong, tennis, or just talking to their fathers. I rarely heard of friends’ fathers vacuuming, cleaning windows, or washing dishes. He did all these things and more without complaint. I complained enough for the whole family. Mom went back to work full-time when I was in the sixth grade with his blessing (I hesitate to state it that way, because he fully supported her choices). In his mid-fifties, he moved to Memphis for her job and commuted to Denver two weeks every month because she had interrupted her career to move for his. He took care of Mom for the last ten years of her life, putting aside nearly everything for her.

One of the things I love most about Dad is his absolute, unwavering unconditional love for those fortunate to be in his orbit. He wants nothing but good things and happiness for you. This used to intimidate and frighten me: could I live up to such a fierce love? Now I see that I do the same to Katie. There are worse things in life to know you are someone’s sun, moon and stars. He spoiled me a bit, but again, there are worse things. He has supported me unequivocally throughout grad school (he used the proceeds from Mom’s cello and bow to pay for it) and through my ordeal with Lyme disease. I do the same for Katie, and we do what we can for him. It’s a happy circle of unconditional love that I wish everyone could experience.

Dad was not a pushover, however. I tested plenty of boundaries. My brothers didn’t know what boundaries were. Dad has questioned his (and Mom’s—they were a team, 100%) choices on how he raised us. This is both endearing and annoying, because there were maybe four or five times, tops, where the punishment was unwarranted. He likes to remember differently, but some of his punishments were downright genius. One of my favorite stories (and his least, probably because it reflects poorly on me) is the time I was caught completely bombed on Quaaludes (thank goodness the guys’ parents came home, because we were literally on our knees howling with laughter because we couldn’t get the car keys in the door to unlock the car). Dad grounded me for six months. He said we were going to be spending a LOT of time together and signed me up for tennis lessons with Kingwood’s new tennis pro, Jim Rombeau. To this day Dad and I share an abiding love for tennis. This didn’t solve all of my misbehaving, but it brought us much closer together.

There was a time when it used to irk me that old boyfriends (really, all of my friends) always asked how Dad was doing, to the point where I suspected they liked him more than me. Now I see it for what it is, a huge compliment to him. He’s nonjudgemental and listens, no matter your sex or age. I remember discussions about news, books and life as early as nine or ten. When I was twelve, or maybe thirteen, I announced I was atheist. He asked me how I came to that conclusion and we began a discussion on belief and faith that continues to this day.

Dad won a lawsuit against an oil company known for stiffing independent exploration geologists who’d done work for them, largely because the jury found him an impeccably honest and moral witness. He once told me he’d rather see an honest F than a cheater’s A. He embarrassed me and my cousin Ginger at the movie theater by doing a spot-on imitation of Tevye singing “If I were a Rich Man” during intermission. He got thrown into the pool regularly because he was that dad, a good sport who liked to have fun. He likes to solve the world’s problems over a few drinks. He makes his granddaughter feel like she’s the center of his universe.

Whew. All these compliments! Lest you think he’s perfect, he can’t dance. His singing is abysmal. His ‘cooking’ is utilitarian at best, popcorn and wine at worst. He hates to wait. He can barely sit through a movie. He hates most holidays. He never feels like he gives good gifts (this is nonsense, he gives the BEST gifts).  He gets mad when Katie and I fuss over him. Too bad, Dad. We will fuss over you forever. Many friends who know him joke about letting him adopt them, too. He picked me, a hard-to-place monkey-faced baby. I’m not nearly as nice as he is, so too bad, he’s mine, and I’m not sharing.

 

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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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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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