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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stamina

I have lost my stamina. I’ve become the person others look at to feel better. You know, the “my life sucks, but it could be worse, I could be as sick as Melissa” line. I know, because I’ve done that. Haven’t we all? One of my guilty pleasures used to be “Toddlers and Tiaras”. Yes. It’s horrifying. But I had the satisfaction of knowing I wasn’t one of those  moms. It’s disconcerting to be on the minus side of the equation. You walk this line of wanting to appear strong and in control, but also being honest about being ill. It is shocking how much energy Lyme uses up. At the height of my illness, November through March of last year, there were days when stepping into the shower required a pep talk. There were times when Katie had to drive me everywhere, carry my purse and all the shopping bags, and sometimes handle the transaction (I’ll write about how I lost my mind…I’m simply not ready for that yet). I will be forever grateful to her for how she stepped up. I’m just now realizing how hard it must have been on her, seeing me wander through the house, dark circles under my eyes, a shadow of her once indefatigable mother.

On one of my doctor visits this June, we discussed what I could and couldn’t do, because I was starting to feel better. As in all things Lyme, it depended. It depended on how I felt that day, what meds I was currently on, how my liver was functioning, how hot is was (Lyme patients are notoriously sensitive to heat), etcetera, etcetera, etcetera. I was given a few guidelines. I could swim, but start with 300 yards and no more than 500. I could play pickleball, but be careful. I could go back to work, but not full-time. He cautioned me several times about doing too much. Of course, I ignored some of the advice. What did he know? I had stamina! HAHAHAHA! Lyme likes to fuck with you, and the joke is always on you.

By mid-July I was in full relapse mode. It was as bad as it had ever been. Damn, I was pissed! And humbled. If you’re not humbled by Lyme, you have an ego of Trumpian proportions. There is something powerful about hitting bottom. If you’ve never been there, I’m not suggesting a ride down, but if you’ve found yourself there you know what I mean. I wallowed down there a while and reached the strange nexus of choosing to rise and also not giving a damn. You get stripped down to what matters in your life. The problem for me is as I rise back up, I start to give a damn once again and I second guess myself. Worse, I let myself hope without any expectation or guarantee that what I want will happen. This messes with my head. I’m not the same person I was before Lyme. I had stamina. The definition of stamina is “the ability to sustain prolonged physical or mental effort.” Well, I could sustain the prolonged physical effort of surviving at the bottom for a long fucking time.

But what if there is no bottom, just a boulder to push up an endless hill? Don’t we all feel like life is a Sisyphean punishment sometimes? I hit a point where I could see, for the first time, the possibility that ending your life could be preferable to suffering. This is quite different than contemplating suicide. It’s the acknowledgement that everyone has a point where the suffering is too much to bear. At what moment did I choose to crawl upward, Lyme be damned? At what point of suffering would I give up? I would never put myself in a position to get Lyme again (although I’m sure I could bear it—we can all stand much more than we think).

Stamina has a cost. I am weaker that I was. I have to plan for the possibility that Lyme may have altered my life irrevocably. I have no idea what the future looks like. I hope there’s love and happiness and meaning and purpose. I need stamina to create this reality with what is left after Lyme. And I want to get back that “I don’t give a damn” attitude, because I was fearless. I haven’t lost all of it, but doubt creeps in. I’m not a shadow of my former self.  I’m morphing into a better self. It is as hard as being sick. Sometimes it’s harder, because I was already pretty great. HA! There’s that I don’t give a damn attitude. I’m going to need that. And stamina.

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