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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retired?

What’s the difference between being retired and being useless? Staying busy or taking up space? Is there a magical moment where one moves from one column to the next? I’ve been pondering these questions as I cobble together ways to feel useful and productive with the erratic uncertainty of Lyme. I am terrified of being seen as useless.

There is a lot of talk these days about “personal responsibility” and not wanting to pay for “able-bodied people who can work.” This presents me with a dilemma. Do I make myself sicker to assuage the scarlet letter of being useless? Or do I take care of myself and continue to chip away at my inheritance? I’m not costing anyone but my future self a damn dime. I don’t have insurance. I pay cash for all my doctor appointments and medications ($15k and counting). I am on no assistance. So why do I continue to beat myself up about this?

I do work. I lifeguard. It is low-key (except the .1% of the time when you’re faced with a medical emergency) and I can make my own schedule. I am an Airbnb host. Neither of these jobs pays the rent. They give me structure that I can manage and something to do for money. Cleaning, shopping, gardening, writing, socializing and working out take up the rest of my time, in that order. Some days I have to drop some or all of these things. Big deal. I deeply resent the idea that you have to ‘earn’ the right to be useless in America. First of all, being useless in America means not getting paid. Every  stay-at-home parent knows what this is like. We don’t value certain jobs as much as others. We vilify the working poor. We especially abhor people who don’t carry their weight.

Second of all, things happen. Illness, bad luck, poor choices, economic downturns, anything, really. Most of us are closer to the edge than we’d like to admit. Most of us wouldn’t last long if we didn’t have investments, savings, families, or access to a social safety net. Without my dad and Katie, and friends, I’d give myself two years, tops, after contracting Lyme disease. That makes me lucky, not worthy.

We all know people who, for whatever reason, have more trouble with this than others. I am far less judgmental than ever (not that I was terribly judgmental to begin with) now that I have Lyme. People post memes that say things like “You never know what someone is going through. Be kind. Always” on Facebook all the time. I know instantly that this person is saying, in code, that they are going through some kind of crisis. It’s important to realize that things happen to good people, bad people, and everyone in between. Sometimes it’s not their fault, and sometimes you know damn well it is. Then what?

It’s an awfully big job to decide who is worthy of your empathy and who isn’t. I know some people see me out and about and wonder to themselves ‘how sick can she be’, and I want to explain how Lyme works. When I turn 65 and still have Lyme I can consider myself ‘retired’ and not ‘sick’. Or can I? Maybe I can be sick and retired. Will I be worthy of idleness then? What if I get well and want to work. What if no one hires me because I’m too old and have been sick?

I’m not alone with these thoughts and fears. I am exceedingly lucky to not have to ask other questions, like  ‘will I run out of money’ and ‘do I have somewhere to live’. I am torn over solutions. On one hand, I don’t want insurance companies dictating my Lyme treatment, mainly because they are shitty at it. They deny and charge higher prices, so much so, that I’d rather pay cash (at much lower rates, I might add). If I was on Medicare or Medicaid, I’d have the same problems. Maybe Lyme is a special case, right now, with no consensus on how to treat, for how long, or what to do for patients who fall into the category of ‘chronic or persistent Lyme disease’, like me.

Meanwhile, I struggle to maintain a balance between self-care and usefulness.There are things I have let go without my knowledge. Through a stroke of luck (Jake, it’s Jake wanting all my hours at the pool), I’ve had some extra time. I hadn’t filed papers or gone through my files in a long time. I cleaned the refrigerator and the pantry. I went downstairs and cleaned long neglected corners of the house. The acts lightened me and gave me the sweet illusion of control. I was deeply disaoppointed, too, because man, I thought I was keeping up. It was a disconcerting peek into old age—the shocking ease with which things can get way out of hand.

There does come a time when you have earned retirement. Full retirement. The kind of idleness that means your biggest decision might be whether to put on clothes. My dad is there. At almost 89, he can do whatever he damn well pleases. At some point, I’m going to have to reassess where I am with Lyme, retirement, and usefulness. I’m putting it off as long as possible, because I might not like my choices. A lot can change in a short time, though, that much I know. And sooner or later, if I’m super lucky, I’ll get where my dad is. I don’t think I’ll wear clothes.

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presentation

I have started dating. No reason, whatever was holding me back isn’t anymore. For me, decisions like this one are generally stewed over for a while and then, poof! the switch is thrown. Once thrown, it’s full steam ahead. Dating at 58 is no different than 18, emotionally. By 58, though, you have to worry about presentation. Presumably, you’ve acquired some wisdom and baggage by now, and daters want to know more concrete things about you (unlike young dating, where loving the same band might be the basis of a relationship). Also, it helps to know what you want and what you need. Oh, and who you are. Easy-peasy. And there’s the whole Lyme thing to explain: “Yeah the last year I’ve spent being sick. With Lyme. Uh, nothing else, just being sick.” I’ve met a few guys for coffee and here is what I’ve discovered: I’m an intellectually complex person with pretty simple wants. I’m not ambitious, career-wise. I want to write and have people read what I write, but there is no ego involved with what I do to make money. I lifeguard, right now. It’s what I can do. Am I anti-feminist if what I want is to take care of those close to me at the expense of a job? Am I regressive if I am happier and more comfortable being the woman behind the man? What value do we really place on that person who provides a warm place to land at the end of each day?

I’m financially stable, so I don’t want to depend on a man, but how do I convey this part of myself without sounding like a Stepford wife? All of this is complicated by my family history. Both my birth mom and mom were driven, accomplished women at a time when having a real career was unusual. Does my simpler needs dishonor the obstacles they faced in earlier times? My choices in my marriage come to the forefront. I have to own those, and realize that the ridiculously old-fashioned role of ‘housewife’ suits me. Actually, I prefer the older term ‘chatelaine’ which means mistress of the house. Done properly, there is always toilet paper, food, and other necessities. The sheets are always clean, the house well-ordered and fresh-smelling. There are no take-out menus or frozen dinners. Paper plates are not used except at cookouts. Sure, you can pay someone else to do all of these things or not be bothered by not doing them, but there’s a reason this role is both revered and reviled in our society.

As in all things, it all depends on your perspective. If you feel honored, valued and respected, almost anything is satisfying. One thing I’ve learned through getting older and having lots of time to think (Thanks, Lyme!) is I can embrace my nature. This is who I am. I believe there are men out there who would like to match wits with one of the world’s more complicated housewives. At least I hope so. When you’re sick for a long time you lose all sense of self, and a good deal of self-confidence. Presentation becomes a minefield of being totally honest and not scaring someone off immediately. Oddly enough, I don’t care a thing about age. As in, I am 58. Deal with it. I do care that I look healthy, happy and like I take pride in my appearance, but a girl like me will only do so much. I will not do plastic surgery, botox, anything artificial, or hair color (but I have so little gray that it’s weird!). I will do makeup, perfume and excellent foundation garments. A good bra is worth every penny. Sooner or later, if I meet someone, they will see the real me. I’d rather it be sooner.

I have dealbreakers. Don’t we all? I don’t like mean people. I like someone who’s comfortable in their own skin. Cars and stuff don’t impress me at all. Brains do. What you read and the music you like matter, to a certain extent. If you love motorcycles, skiing and football, we’re probably not going to be soulmates. And then there is chemistry. That’s…like lightning in a bottle? I’ve only experienced that rush once in my life, that instant connection. I’d like to have it again, but am I willing to wait as long as that takes? I guess we’ll see. At my age, and especially after Lyme, I want that, dare I say I deserve it? Yes. I dare.

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