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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Fears

I used to think I wasn’t a fearful person. Armed with statistics and a healthy lifestyle, illness and accidents were part of a lottery I thought I had little chance of winning. Then I was bitten by a tick. Now I see that I had plenty of fears, I just didn’t admit to them. Except for spiders. I was afraid of spiders. Now I’m afraid of ticks.  I don’t know if I will ever willingly go into actively tick- and Lyme-infested woods. Going through the last four years again is unfathomable to me.

The list of my fears is not rational. Is anyone’s? I am scared of, in no particular order, tornadoes, earthquakes, cycling on roads, drowning in the deep ocean, and losing my daughter. Oh, and volcanoes. Being encased forever in hot magma scares the crap out of me. I realize my chances of dying in a tornado, earthquake or fire are slim to none, but they evoke a primal terror inside of me, as does drowning in deep ocean waters. These fears limit me only slightly, but I would think twice before I lived anywhere along the ring of fire, or tornado alley. Now that I live in the suburbs of Denver, fire is not a real fear, but I definitely live in fire danger country.

I am not afraid of flying, drunk drivers, snakes, mice, or smaller spiders. Large, unexpected spiders make me jump, but I’m not gonna die of fright or anything. I should frightened by cancer, falling down in my own home, fire, heart attacks, strokes, and gunfire, but I’m not. I am less and less afraid of death. I do retain a perfectly healthy fear of how I die.

Getting into existential fears is pointless. Of course I’m afraid of failure, success, commitment, being alone, love, not being in love,  and why I exist at all. I’m not particularly afraid of speaking in front of people or rejection. Any sane person should be afraid of being shamed in public or shunned. I think I probably should have titled this ‘My Personal Fears’. Fears, like one’s belief system is highly personal. No two person’s lists are the same, really. I might argue that these two parameters truly define who one is.

This completely informal list of neuroses has changed, obviously. Life experiences shape one’s fears. Fears about illness and aging have moved to the front For instance, is Lyme like polio? Will it come back with a vengeance when I’m older and physically vulnerable? What if I do something foolish, like trying to descend a flight of stairs with two suitcases while I’m traveling and fall? What is I’m working in the yard and have a stroke? I never gave a moment’s thought to any of these scenarios when I was young. The slow, inexorable accumulation of insults, injuries and illnesses has changed my list.

My fear of ticks is actually grounded in statistics and science. Global warming has exacerbated the upswing of vector-borne diseases. Mosquitos, ticks, and fleas hang around longer because there are less sub-freezing days. We encroach more and more on natural habitats of the deer, mice and other animals these insects feed on, exposing ourselves to an ever growing list of diseases. There are diseases in the water and dirt around us. Houstonians know this firsthand after hurricane Harvey. Southwesterners know that Hanta virus and Valley Fever fungus live in the dust and can kill. People who live where mosquitos are know about Zika and West Nile Fever. I don’t think my fears on this front are misplaced.

With Lyme, I have discovered earlier than some people that I am terrified of losing my mind. I think I could live with loss of mobility, or hearing, but I’m not sure. I also think I could live with chronic pain, but I’m not sure. I am positive I cannot live with the loss of cogent thinking.

As I wrote out my list of significant fears, I left out the everyday fears, the ones I have carried most of my life, because I wasn’t quite aware of them. The biggest one is protecting my deaf side. I do not climb trees. I do not place myself in physically precarious situations, like bungee jumping, cliff diving or skiing. I guard that side of myself unconsciously and zealously. This is another fear, like ticks, where my fear is valid and my vigilance necessary. The other constant fear didn’t begin until thirty-one years ago, when Katie was born. I share this fear with nearly every parent, the thought that I might lose Katie before I die is always there, a kind of low-level current that trips when she’s driving late on a snowy night and I haven’t heard from her, or when she gets sick.

Lifestyle and genetic illnesses don’t scare me at all. My biggest indulgences are smoking pot off and on, depending on how sick I am, and salty chips. I don’t have a family history because I’m adopted. Aside from Lyme, I have zero health problems. No high blood pressure, no cancerous moles or heart problems. No medications outside of Lyme. I tend to feel my chances of cancer are dictated by genetic mutations and bad luck, so I play that lottery without worrying. If it happens, it happens. I’ve worn sunscreen virtually my whole life (thanks, Mom!) and have had one sunburn.

So that’s it. A somewhat incomplete list, to be sure, because I could reel off a whole other list of minor anxieties and half-baked fears. But these are the biggies, both rational and irrational. Right now, and perhaps for the rest of my life, Lyme disease remains the hulking specter that overshadows all other fears.

 

 

 

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priorities

I am bouncing back from a particularly shitty relapse. I’m feeling overwhelmed and hopeless, like I can’t manage my own life anymore. The worst part of this relapse and aftermath has been mental. If you haven’t heard from me in a while, you are not alone. I prefer to be wiggy in private. To add to all this crap, it’s been four years since I was bitten by a tick. FOUR YEARS. I’ve read anecdotal evidence that people have relapses around the same time they were bitten. If so, it makes perfect sense that I relapse now. On top of that auspicious milestone, heat causes some Lyme patients (me included) to feel much worse.

This one blindsided me. I was, I thought, on the road to real recovery. And so began valuable lesson #1 with Lyme ‘recovery’: plan to relapse at any time whether you like it or not. The hallmarks of any valuable lesson is suffering, humility, pain, and a bunch of other emotions I avoid. Denial, my old bitch of a friend (denial is female in my world), came for a nice visit until I dragged my ass to my LLMD. It seems that my bugs like my brain. It’s where they hide when I’m feeling good. He announced the return of bartonella. YUCK! Bartonella is the worst. Sore feet, sore teeth, ear pains, headaches, neck aches, muscle aches, creaky joints, muscle cramps, watery, itchy, achy eyeballs, and mental problems. I love a good euphemism, and “mental problems” is right up there with “small setback” and “not too bad”. Why is it so hard for me to admit to depression, anger, anxiety, hopelessness, lack of motivation, and obsessive compulsiveness? Everybody has some of these feeling sometimes. If anything, I should announce them like a badge of honor, because I have bugs in my brain.

Denial left the house and self-pity moved in. I wallowed around with him (of course self-pity is male!) like a pig in a mud bath for a few weeks. I cleaned. I cooked. I slept a LOT, walked the dogs and gardened very early while it was still cool. That was all I could manage. Self-pity is that friend who doesn’t like any of your other friends. After that, I had hours to fill with all those fab feelings of worthlessness, sadness and guilt. I was able to read some ‘beach read’ books, and the sheer mindless entertainment helped a little.

It wasn’t until I found Downton Abbey that self-pity had a challenge. I know, I’m late to the party. At this rate, I’ll probably start GOT in 2022, and Breaking Bad in 2024. What can I say? I was hooked. Katie will remember this as the summer her mom sat in the cool dark of her bedroom at midday, the sunlight cracking the edges of the blackout curtains, lost in the delicious machinations of the Crawley family.

My relapse was also worse because I had four months of relative clarity and sanity. Is it harder to bounce back mentally each time my brain becomes inflamed? Is it harder for anyone else in this situation? I meet so few people who suffer from episodes of an inflamed brain. Is the quality of the crazy different if it’s a chemical imbalance, rather than an illness-induced debilitation? These really aren’t the kind of questions I can ask most people. There is the possibility that I won’t ‘work through this phase’. What if I never truly get well? What if I have to live a different kind of life than I thought? What would that look like and would it be so bad?

In a sense, I’ve been given the gift of getting my priorities straight. What adjustments am I willing to make to concentrate on what matters most to me? And what matters to me the most? At the end of the day, how do I want to have spent my time? This is not an easy task. The options all have good and bad sides.  What irks me the most is the adjustment I am struggling with now: the loss of endless possibilities. The emphasis is on ‘endless’. That part of the equation is simple. I can’t do it all. I have to make the hard choices in order to stay healthy. This must be what makes Dad worry so much—he is far more aware of the implication of limited possibilities than I am.

What I must do is what I have always done, and that is to find the positives in relapsing. In that, I have boundless confidence. It’s what I do best, even with an inflamed, fragile brain (and for me, my brain is my vanity, my Achilles’ heel) and low, low self-confidence. As with all things Lyme, this will pass and I will feel better, at least for a while. If I can figure out my priorities and can handle my new levels of expectations, then everything else should be gravy, not the other way around.

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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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flabby

My mind, body and spirit have grown flabby from Lyme. I had good news from my doctor this week. I am, metaphorically, sprinting down the backstretch. Only I’m not sprinting, I’m lackadaisically strolling, the one pace Lyme allowed. This is supposed to be good news, and it is. I haven’t figured out what it means for me yet. I was warned that this isn’t an immediate return to health. My body is more than flabby, it’s a toxic waste dump. It’s worn down and tired from three years of illness. When I was out of town with Dad the last few weeks, I got compliments on how good I looked. What a cruel paradox. I’ve never looked healthier or been sicker.

I joked with my friends in Dad’s retirement village in Tucson (yes, I’ve spent so much time there that I have my own friends there) that I live the lifestyle of a five-year-old. I also joked (but not really) that I’ve gotten a preview of the ravages that age brings. A preview, not the big show. I hope I make it to the big show. I’ll at least know how important taking care of yourself is.

That was one of the best parts of my doctor’s appointment. I have passed into that strange relationship doctors and patients have when they are brought together through serious illness. Not-quite-friends, he knows too many intimate details of my body and life to be merely an acquaintance. I see his wife, also, and I was delighted to hear from each of them that because I work so hard on my health (italics mine, because I am pretty fucking proud of myself) they think I’m going to make a full return to health. Yassss!

One of the secrets to coping with a long, drawn-out illness is surrendering to the illness. Not surrounding as in giving up, but giving in. It is, however, quite possible that I have gotten too comfortable with this skill. It’s ironic that the coping mechanisms I used to get through the last three years might be liabilities on the road to wellness. So what do I do now?

I consider myself an athlete. I have never gone more than eight weeks without working out. Whether it’s tennis, swimming, pickle ball, weight-lifting, Zumba, Jazzercise, running, hiking, or yoga, I am always doing something. I have continued this as much as possible during Lyme; in periods of relative health I swam, played pickle ball, walked and lifted weights. Each time was hard. I’ve had no stamina for two years. Getting back into shape is always a pain in the ass. I’ve done it after each of my surgeries and I will do it again now. Five minutes today, ten minutes next week. One day I’ll wake up and be working out at my normal pace.

Maybe that’s what I need to do in other areas of my life. I’ve never lost my mind before, but I’ve been working crosswords, playing Words with Friends, writing, reading again—getting my mind back into shape. Now I have to turn that mind-play into mind-work. I’ve shied away from mental work because I couldn’t handle the inevitable failure trying to perform a challenging job while I had Lyme. Now that’s changed. First step will be to devote an hour or two each day to a new, online writing job. It will seem unbearably difficult to me at first, like that first time I swim after a long layoff. I feel like a beached whale the first three or four times, my limbs flailing through the water and lungs gasping for air. Then there is a day where I slice through the water, pushing the last fifty of a two hundred without dying. I will gradually work more hours. One day I’ll wake up and realize I’m doing it easily and happily.

It’s the time between now and one day that is daunting. I’m sure I’ll push too hard, or beat myself up for not pushing hard enough. I’ll cry and get angry and wish things were different. I’ll bitch and moan to anyone who cares to listen (anyone? anyone?) how hard it is. There will be days where I feel strong and sharp and in control. There will be many more days where I want to crawl under the covers. I don’t ever want to be this sick again. Never, ever, ever.

My spirit is the weak corner of this triangle. This is one of the few times I wish I had faith in something. How easy it would be to fob it off on “god”. That’s not for me, though, I’ll have to figure out how to get my joie de vivre back on my own. It may surprise me, what makes me happy and replenishes me. I don’t have a clue at this point. Or maybe I do, but like my mind and body, my spirit has also atrophied, the energy Lyme took far exceeding my resources. What if my spirit doesn’t come back? I’m scared I don’t have what it takes to make it down the final stretch. I know, I’ve made it this far, blah, blah. If I can’t figure out how to rejuvenate my spirit, all of this will feel insurmountable.

I look at the people in Dad’s community. Some of them face what seems to me to be unimaginable hardship. They all cope with their changes differently, that’s expected, but they all share an unquenchable spirit, a thirst for life. That’s what I want. I just want it to be easier to get. Not only that, I find I really want to hang around for awhile. The world is an endlessly interesting place to be. I’ll find out what my spirit is made of, and what revives it. I’ll use that knowledge when I graduate to the big show and I’ll stay thirsty for as long as I’m able.

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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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deflate

My favorite! I didn’t think anyone noticed this particularly delightful symptom, but they do. It’s when you feel pretty good—you’re shopping for furniture or at a concert at Red Rocks, or just playing pickleball when WHAM! Deflate. I’ve been thinking about exactly what happens, and how perceptive people can notice so quickly. I’m a fairly high energy person, sometimes hyper, even (feel free to correct me if I’m wrong, friends), so when I am quiet and still, it isn’t normal. The Lyme deflation is swift and complete, reducing me to a zombie-like trance. In the space of less than fifteen minutes I can go from peppy and happy to paper-doll flat (I really should insert a Tom Brady reference to Deflategate here, but I can’t think of one. Feel free. Really.).

Today I deflated an hour into playing pickleball. I have had a lot of bad days lately, not sure why, but am I ever sure why? The symptoms have all risen to above my neck. I still have liver pain, kidney pain, joint pain and fatigue, but those are all intermittent and no big deal. It’s the brain/eyes/teeth trifecta that make me miserable. For the past three or four weeks, my eyes have been wonky. My left eye has this giant grey floater that swings from side to side, daring me to shift my eyes from side to side, like I’m watching a bizarre tennis match inside my eye. It drives me crazy. I’ve had eye problems since the beginning of Lyme. Itching, burning, an eyeball ache, floaters, blurry spots, ghosting in my peripheral vision, and now this big grey glob in my eye.

I was playing okay, I was in a bitchy mood, which is not uncommon. I had energy and made most of my shots. About an hour in, my eyes acted up. I rubbed them and they teared and burned and that damn glob swung back and forth, distracting me from the ball.  Within minutes  my head pounded and my energy dissipated. A fullblown deflation. Two of the three players I was with stopped and asked if I was okay. Wow. I didn’t think I looked different when I deflated. As I left the court (after losing, goddammit!), I said I wasn’t feeling too well. They said they noticed. Others noticed when I gathered my things and walked out.

Why am I unaware of my own deflation? I mean, it’s happening to me, you’d think I’d notice. Perhaps all my energy goes into maintaining my composure while out in public. If I’m home and I deflate, I can collapse on the sofa or in bed and not worry. If I’m out doing something, it’s different. The energy it takes to simply walk or speak is almost out of my reach. I’ve been thinking about when I see this kind of collapse in others. A small child deflates naturally, several times a day, either into sleep, or a tantrum, or more often than not, a stupor. Maybe that’s what people see happening to me. I can stupor with the best  of them!

The silver lining is I’m not super aware of my collapse. I can acknowledge my decline and be aware that I have to get home. Other than that, my ability to respond to other people is pretty much gone. I think because I am usually gregarious and very tuned in to the moment I might get a bit of a pass from most of my friends. At least that’s what I hope.

I made it home, and now I am dressed in my favorite sloppy outfit, ensconced in my magic blue writing chair and high as a kite. Medicinal marijuana is a gift from nature. Don’t knock it until you’ve had Lyme. I hope this particular deflation doesn’t last too long. Hey, another silver lining: this may be the first time I have stayed coherent during my collapse! If you are my friend, don’t correct me on this one, please.

 

 

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circles

This weekend is my fortieth high school reunion. I am going. There is something about Texas that keeps me coming back, but I’m not a Texan. I’m what I like to call an ‘accidental Texan’. My parents aren’t Texans, they are from Kansas, dropped into Texas because my dad was a geologist. I was born in San Antonio and adopted at six days old. I spent most of my childhood here, and went to college in Austin.

Houston and Humble are both deeply familiar and completely alien to me now. I wonder if my classmates who never left feel this way, too. For some reason, when Lyme moved into my brain for an extended duration, I went back to my past, circles within circles of memories. A high school reunion is a big circle. Many people say, “You’re going back? Why?” It’s hard to explain why Humble High School Class of 1976 was special. For those of us who were there, it marked us as one of the first classes where two radically different groups of students came together. It’s hard to imagine what a mass influx of new people from all over does to the delicate social balances that make up a high school. There was resentment and miscommunication, sure, but also a sense of adventure and acceptance. At least half of our class had lived in Humble most of their lives. The other half had lived there less than five years. Of course, there was Forest Cove, but they evolved into a super-tight group that didn’t quite fit into either category. I am over-simplifying here, but this is why I have a special place in my heart for Humble.

This past winter, I had days upon days where I could only lie in bed and listen to music. I could not read, TV was totally beyond me. With Lyme, I’ve spent the last year turning inward, often going back in time. I spent a few months looking up old boyfriends, as if imagining the road not taken would change the fact that I had a serious illness. Lyme disease is a great trickster. I felt fine one day, then was down for three or four days in a row. The symptoms varied—from the merely annoying, like achy joints and muscles, to the downright scary, like when my heart rate plummeted to forty-two beats per minute, or the times when I forgot how to drive. Of course, I took special pains to get bitten by a tick that carried three bugs: babesia, borrelia, and bartonella. I am an overachiever in all the wrong things. Lyme zigged and zagged its way through my body, never once stopping and asking how I felt about the whole thing.

In earlier years I worried quite a bit about how my life would look to my former classmates. Did I look happy? Successful? Did my family represent a fabulous, American dream kind of life? Now that I’m older, I care less and less about those kinds of measures. Instead, there is a long list of sorrows and joys that we all understand now: the great levelers. Loss of parents, brothers and sisters, and sometimes children. The birth of grandchildren, a life spent with someone you love, a settled sense of happiness. The list of lost classmates is growing. How I want to look is like me, the me I was way back then. I hope my classmates see me and know in an instant that I have changed very little inside. I’m still impulsive, dorky, happy, and smart-mouthed. I still sing in my shower and car. I still dance while I’m cleaning house. I still like almost everyone and wear my emotions right where everyone can see them. I still get anxious when I see old friends, that feeling that everyone else knows what’s going on and I don’t. I hope I take the time to see the person inside of them, too.

Music was a great comfort while I was sick. I actually listened to ‘Free Bird’, the Humble High Class of ’76 song and liked it. I listened to everything. Classical, rap, rock, electronica, jazz, soft rock (!?!?), and even, for an afternoon, The Eagles, a band I loathe. What does this have to do with anything? The whole circle thing, right. I saw Willis Alan Ramsey last Saturday night with my old friend Bryce Payne (he is both old and an old friend…an old old friend?) and had the pleasure of hearing a song he sang to Valerie Bell Greiner, another old friend from Humble. We were college freshmen, about three weeks in, and Willis played in Dobie Mall, right by the elevators. I was watching a Texas folk hero play ‘Northeast Texas Women’ to a friend of mine. I felt like I had arrived. All of life would be like this. I told Bryce and he was skeptical. He hadn’t heard this story, and he was certain he would have, if it had really happened. Was I certain it had happened? Mostly. It was one of those crystalline memories that stay with you. After the show we found ourselves standing next to Willis Alan by the door, and I said, “It’s a full circle night. I saw you play at Dobie Mall in 1976.” Bless his heart, he said “I remember that! First time I ever played by elevators.” Full circle indeed.

There is a sense of nonchalance about this reunion. Serious illness gave me the gift of whittling down my life to the things that truly matter to me. I hope I remember this as I recover. Now, I can’t quite figure out why going in circles has been so comforting this past year. Maybe you have an idea. Maybe by connecting with the past in times of crisis we can forge a new reality, taking strength from happier times. Maybe by getting a chance to revisit the past, as I will do this weekend, I can put the circles in some sort of order. Ha! As if life can be ordered. Maybe I’ll just kick back and enjoy it for what it is: a time to reconnect with people who knew me before I knew myself.

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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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