Tag: hope

baby steps

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In the past 7 years I have made many attempts to get “back to life.” “Life” was defined as a regular job, keeping up the house, paying the bills, an active social life, and a return to health. Each effort lasted until a flare-up, and then I couldn’t juggle all of those things. After most attempts I felt worse than if I had never tried. This past year it was clear there would be no “back to life” as I knew it.

I decided to redefine what “life” meant to me. I had to look deep and let go of things that took too much of my energy and time, rather than exhaust myself keeping the thought of that other life alive. I’m sure that some friends looked on in concern as I sold my house, my car, and many of my things, bought a townhome to share with my daughter (I made the down payment, she carries the mortgage and we are both on the deed), and came down to Tucson to stay with my dad. “Crazy,” they probably thought, ” I could never do that.”  And maybe they couldn’t, or wouldn’t.

I’m going to do something I rarely do: give myself credit for knowing, deep in my bones, that this was precisely the right series of decisions for me. Like a snake molting its’ skin, or for me, more like a hermit crab scuttling from one snug home to another, I did all those things listed above . I made my  life move, whether I’m truly ready or not. Somehow, I knew what I needed was more space where I had time to think, and to do nothing but concentrate on my health and my self. It sounds like a huge gamble, but in reality it wasn’t. Once you’ve accepted the way things are going to be and what you can change the options are easy.

You’d be surprised how little possessions matter when the tradeoff is the freedom to grow. In fact, I feel lighter, less held down by a place or the responsibilities of caring for all that stuff. Do I miss some of those things? Of course I do, sometimes, but for the most part I don’t think of them at all.

So far, the results have paid off. I feel better than I have in over seven years. There were a few hiccups (the COVID vaccination and boosters sent my immune system into overdrive for weeks afterwards), and a few times when it seemed like nothing was going to change. Then one day I woke up and realized I hadn’t taken any medications, herbs, or sleep aids for Lyme in a week. Another day I had the energy to lift weights or swim 2000 yards. I was writing with a clarity I hadn’t had in so long I feared it was gone forever.

This is good news, right? Surprisingly, returning to health has required a great deal of work and energy.  A subject we don’t talk about much is the emotional burden of having a chronic disease. Lyme, in particular, is linked to  higher rates of depression and suicide, and lower quality of life., and PTSD  PTSD? I didn’t see that one coming,  but because I never know when or why I experience a flare-up, nor do I know how bad or how long a relapse will last, my body and mind stay on hyper-alert, always ready to fight. As you can imagine, this is an exhausting vigil.

I believe I had forgotten how to be healthy, how to have hopes and aspirations, and how to have a regular, steady rhythm to life.  I discovered that I had been protecting myself from the inevitable relapse, even in areas of my life like books, movies, and television, never watching anything too emotionally challenging unless I was “up for it.” Shedding all of the parts of my life that took up time and energy gave me room to just…be.

Living in a retirement community in Tucson with Dad is about as low-key as you can get. My dad’s house is a short walk from the pool and weight room. I walk Rocky around the neighborhood every morning, saying hello to the other walkers. I help Dad with whatever he needs, which isn’t much (usually a tech problem or something he doesn’t want to take care of), and the rest of my time is my own. Well, mostly my own. One of the secrets I’ve learned during my journey, is that I need to keep plugging away at writing and learning when I can, even if I forget it later or what I wrote was crap, because sooner or later, the writing becomes good and the information sticks.

I never stopped taking twice-weekly Spanish classes and kept on writing. I continue to make long-term plans for moving to another country, even when it seemed hopeless. This has been absolutely necessary to healing, because having the hope of a different fulfilling life (even if it might never actually happen) makes my life worthwhile. And so I make these baby steps forward as my mind and body come to terms with what I can’t change and what I can change.  I am slowly reclaiming my life, wresting what I can away from Lyme while still recognizing it will always be with me.

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curmudgeon

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Is there a word for female curmudgeon? The formal definition is a “bad-tempered person, especially an old one” and is unisex. I’m not one yet, but I’ve been flirting with the possibilities of allowing myself the luxury. This would require energy, maybe more energy than the daily decision to find something good about the day. That is the choice these days, isn’t it? I don’t know about you, but most days find me on a roller coaster of highs and lows that I’d rather not experience. I’m more of a lazy river kind of gal, and yet the universe has strapped me onto the Tower of Terror.

Pre-COVID, I would have done some the things that kept me cheerful while sick with Lyme: museums, movies, visiting friends, and the occasional trip. This is by no means the whole list, but it’s the one most affected by COVID. Joni Mitchell had it right, “you don’t know what you got ’til it’s gone.”

I have deep, strong inner resources. I’ve had to, with the challenges life has thrown me from an early age. This isn’t the place to get into that, but those of you who know me know that no matter what, I manage to see hope and joy in anything. Lately, though, curmudgeon-ness, or at least the freedom to let oneself become a grumpy hermit, happier alone than with people, is quite tempting. There is a word for this. It’s not even German! Apanthropy: An aversion to the company of men; a love of solitude. I suppose we could quibble about the use of ‘men’ in this sentence, but you get the gist. That’s what I’ve been experiencing, and it’s blossomed under the rich fertilizer of COVID.

The main problem with this scenario is that I’d actually have to say really shitty things aloud. I think this is one of the requirements to becoming a full-fledged curmudgeon. It could be this is why curmudgeon is associated with men more than women (don’t fight me on this. You know I’m right).

Although I care much, much, less what people think of me, it is not in my nature to hurt people, whether they are strangers, friends, or family. This may prevent me from earning the title curmudgeon. I’ll never say never, though. I could become one of those mean old ladies who says exactly what they think.

The pandemic has been hard on virtually every person I know. It doesn’t seem to matter if you are angry at having to wear a mask, or sad that you have lost loved ones, or sick of being isolated, or missing loved ones. I’m not sure any of us can comprehend what we’ve endured yet. I do know it has made me less tolerant. Things that would just slide by irritate the hell out of me, and it doesn’t seem to matter who or what it is. I’m positive I irritate the hell out of people, too. Our national zeitgeist is one of emotional exhaustion. I just had a head start on everybody else.

Most people are new to social isolation, being alone with themselves, or being forced into sharing close quarters with the same people for days, weeks, months on end. Our ability to move, to go anywhere is one of the privileges of living in a wealthy democracy.

Six years ago Lyme forced me to re-evaluate this privilege, but I was no stranger to being alone. I have always been content to be alone, and as the youngest child, that is a good thing. Both of my brothers were out of the house by the time I turned thirteen. My cousin Ginger lived with us for a few years after her parent’s divorce, so it was the two of us for a little while.  From my sophomore year on, Mom and dad worked full time, so I was alone before and after school. I reveled in the  solitude, happily eating dessert for breakfast, blasting my music and dancing with no one to bother me. I was never afraid, because at that time we had Charlie the Great Pyrenees who would have killed anyone who threatened me. I don’t say that lightly. Anyone who knew me then and came to my house could tell you how scary he could be.

I’m sure I was lonely at times. Who isn’t at that age, especially if it was a Friday night and you thought everyone else but you was out having a magnificent time. But even then, I had things to do. I read voraciously. I listened to music constantly. I tried sewing occasionally, and I baked things when the spirit moved me. I didn’t mind my own company back then and I don’t mind it now.

Then I got Lyme. Or rather, I’d had it for over a year and didn’t know it. When I started treatment, I was so sick I barely noticed my isolation. The first three years were the worst. I’m sure I lost friendships over this period, because virtually all of my energy was consumed with taking care of myself. I may have been a little prickly during this time. Really, who could blame me? People had no idea how I could be so sick for so long. Reconciling myself to chronic illness and trying to educate the people around me made me extremely grumpy.

And I grew used to being alone. Not just, you know, a day or two, but days and weeks of alone. I anticipate that the biggest problem for me in life after COVID will be returning to a social life, as in, will I want to? It’s hard to imagine the anticipation of going to, say, a new exhibition at the art museum, or a concert at Red Rocks. I’m pretty sure I’ll be excited over these things once again, I just can’t quite picture it. For now, though, I’ll put my scanty reserves into holding my tongue and trying to see the positives.

 

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Stalled

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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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lovesick

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Infect me. Really. Four years after my divorce, I am ready. Or am I? And why did I choose the word lovesick? Why not simply love? I’m not sure, I’m only certain I want the heart-pounding, stomach-swooping sickness that falling in love brings. I’m ignoring the other side of lovesick. The anxiety and uncertainty, the delirium and yes, obsession it brings.

Some days I’m not sure I want to handle more stress, good or bad. Other days the urge to be swept away, overwhelmed by something outside of myself is intense. Several things vex me about this burgeoning desire to be lovesick. What if I think I’m open to love but I’m not—I’m sending out stay away vibes without being aware of it? This is a distinct possibility. My capacity for deluding myself is infinitely reliable. My intuition is of no help here, it is blind to my own faults. Hopefully I’m sending those vibes to the men who would be wrong for me. Then again, I had a talent for choosing the wrong guy when I was younger. Maybe I haven’t lost that talent yet. I also tend to protect my heart. I know, don’t we all? I have raised this to a fine art, probably from the moment my birth mother gave me away. Sometimes I wonder if I’ve ever been completely open to intimacy. I’d like to think I have and am, but I wouldn’t swear on a Bible or anything (not that swearing on a Bible is reliable with an atheist, anyway).

What if the object of my desire is already in my life, and I am too blind to see it? See above. My talents are freakish and specific. I can tie cherry stems in my mouth. I can identify obscure pop songs. I know how to fold fitted sheets. My past history tells me I have had fabulous men in my life who I’ve pushed away, because they were way too together for me. I have changed, but who knows? Self-sabotage is also another of my talents. The corollary to this is what if the sickness isn’t reciprocated? That’s thinking awfully far ahead, but still…Strangely, this doesn’t freak me out as much as it would have in the past. I don’t have to have love. I want love. The difference is immense.

The last concerns all have to do with Lyme. What if I can’t handle love? This sounds ridiculous to the healthy, but to us chronically ill people, this is a real issue. Stress, good and bad, can trigger a shift. Being lovesick could translate into simply being sick. On the other hand, perhaps love helps the body and mind heal. Wouldn’t that be great? My yearning to be lovesick might be an intuitive quest for health. Kinda takes the romantic part out of it. Which brings up another issue: am I chasing after a high that is unrealistic? After all, that’s what I daydream about, walks in the park (preferably on a sunny, mild day), romantic dinners, slow dancing in the kitchen. not the reality of dirty socks and clashing needs. Sometimes I worry that this makes me more than a little silly, like I haven’t evolved much beyond seventh grade crushing. If only it were that easy. I’d get my friend to go to his friend with a note that has two checkboxes: do you a) like or b) don’t like Melissa? Fill out and give back to <fill in friend’s name here>.

Lyme also has given me a checkered resume. Who wants to take on someone who has health problems? In fact, on paper, I pretty much suck. I want someone to give me a chance, but would I give them a chance? I guess that depends on how lovesick I am. Also, (and for me this is gigantic), how judgmental is this person? It is surprising how many people I have met who do not understand what it means to be chronically ill. Those of us who have been lucky enough to experience the special gift of serious illness have usually learned far more than they wanted about themselves. We don’t judge. You never know what someone else is going through. I’m not sure I can be with someone who helpfully suggests that maybe I need to suck it up and then I’ll magically feel better. That man is not going to be too understanding the fourth of fifth time I need to go to bed for a few days.

Jeez, I might have talked myself out of wanting to be lovesick. It all seems like a lot of work, finding someone, getting to know them, falling in love with them, coexisting with them, being open to being hurt…nah…this is one bug I think I could happily live with.

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hope

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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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