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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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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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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hope

I spent yesterday afternoon in a room full of Lyme patients. It was the first time I had been around so many Lyme sufferers. We were all gathered at the Tattered Cover to hear Dr. Richard Horowitz. For those of you who don’t know, he is a demi-god in the pantheon of Lyme doctors. He’s written two books, Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease, and How Can I Get Better: An Action Plan for Treating Resistant Lyme and Chronic Disease. His first book came out in 2013. It was one of the first purchases I made when I realized I had Lyme. I didn’t get a lot of it at the time, and I skipped over parts that didn’t affect me (I had to go back and reread some of those later, as Lyme careened through my body). I slogged through the dense science along with the case studies. And I felt hope. This book covered everything. He believed Lyme patients could get better and even thrive.

Time passed, and I started to lose that hope. Every time I felt like I was getting well, I had a relapse. “I’ve turned a corner,” I’d say. I had, too. Right into another fucking ditch. Hope slipped away because the trajectory of Lyme is not lineal, it’s  a jagged zig-zag. This is not a pity party. It’s an attempt to share how easy it is to lose sight of health.

I knew the book store would be packed for Dr. Horowitz. He is a physician in the truest sense of the word. When his patients don’t get better, he considers this not a failing, but a chance to be a medical detective. His journey as a Lyme guru started thirty years ago, in the Hudson Valley of New York, now one of the most Lyme-infested areas of the US. Hearing his excitement about new protocols was infectious (pun intended). Seeing that many seriously ill people was, in a strange way, comforting. Why do we feel better seeing others who suffer like we do? There’s that feeling of immediate kinship: this person gets it. There is also a less attractive side to this. Several people were in wheelchairs, or had to use walkers. Some of the people looked dreadful. For me, it’s less about misery loves company and more about I’m slightly less miserable than the rest of the company. Shallow, I know, but there it is.

Dr. Horowitz provided hope to the people listening yesterday. Hope may be the most powerful drug there is. Love is also important. People get better for the ones they love. The combination can be potent. I was one of the few ‘singles’ at the book signing (even Dr. Horowitz was part of a couple, he travels with his wife, a Lyme sufferer herself). There were parents and children, boyfriends and girlfriends, and married couples huddled together. I could immediately tell who had Lyme, because I was struck by how protective the healthy person was towards the Lyme sufferer. I have my dad and Katie, but I prefer to battle on my own with Lyme. Well, maybe not ‘prefer’, but that’s the way it is. No, I take that back. I DO prefer to work this out on my own, mostly. I don’t like to be coddled. There was lots of coddling yesterday.

For the life of me I can’t figure out why more physicians don’t view disease the way he does. Something happened to the way physicians practice medicine between the great gains of the early twentieth century and now. Probably not one thing, but several. The one frightening fact he pointed out is the alarming rise in chronic illnesses. Why? What are we doing about it? Chronic illness is crazy expensive on three levels; personally, monetarily, and societally. I’ve experienced all three these last two years and it is not pleasant. The cost of untreated or poorly treated chronic illness is astronomical. One girl, who is now fourteen, got Lyme when she was six. She went to over fifty doctors before she got the right diagnosis. What that must have cost her family, I can’t imagine. She was lovely, though, thankful that the newest pill Dr. Horowitz prescribed was ‘tiny’. I feel her pleasure in that. I don’t want to brag, but I can swallow up to seven large pills at once. Impressive, I know.

Anyway, today I feel better than I did yesterday morning. His message gave me hope, and hope makes me feel better. One caveat: people ask if one can be cured from Lyme. Dr. Horowitz used the phrase “knocked the load down” several times, and never said the word cure. He talked about herbal protocols to “keep the load down” if symptoms creep back. I asked him about that as he signed my book. “Is that the euphemism you use to dodge the question of a cure?”  I asked. He smiled. “For now,” he said, “but not for always.” Hope. It’s a powerful thing.

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