Gladys

A few minutes after five this morning I turned on a local news program to check to weather forecast. I’ve cut myself off from the news almost altogether; I don’t even listen to NPR anymore and I check the forecast about twice a week.

This morning, a traffic cam was zoomed in on a bridge, to highlight the dangers of black ice, and a man wearing hiking books, baggy cargo shorts, a puffy jacket, and some sort of hat walked into the camera’s path. Shorts? I know this is the Pacific Northwest, home of hardy men who welcome the chilling kiss of the river’s mist on their bare calves.

But the temperature still lingered in the twenties. I could see the frost twinkling in the hair on his legs. I smiled and concluded he was crazy, turned the tv off, bundled up and went out to the porch to meditate and watch the sunrise.

Later, it occurred to me, my neighbors probably think I’m nuts for spending hours each morning out there, no matter the weather. Colder temperatures just mean additional layers. I spend a lot of time doing what probably appears to an outsider as simply staring off into space.

At least, I do now that I’ve changed which direction I face. I used to sit facing generally south, which grants me a panoramic view of the neighborhood on the other side of the street. It’s quite beautiful, regardless of the season, and I’m fortunate enough to know and care for nearly all of my neighbors.

Which brings me to needing to change seats. Early in the morning, as people rise and light their homes while the sky remains dark, it is easy to detect at least shadows as people ready themselves for their days. (Our own incredibly modest neighbor has in fact asked us to install thicker curtains on the windows that face his home. My wife complied; I still grumble and make rude gestures at the fortified window coverings.)

As much as I liked facing south and watching the lacy outlines of the bare trees become visible against the lightening sky, one day I realized it looked like I’d become the neighborhood Gladys Kravitz, peering into everyone’s windows.

Since I value my own privacy, I don’t tend to look into other people’s homes. It freaks me out when there’s a gap in our curtains, and I make the rounds a few times a night closing them up as the cats get into and out of the sills. But it is human nature to be attracted to sudden movement, and one morning an abrupt flash of white in the window directly across the street interrupted my reverie.

I looked up, of course, and noticed the curtain in the window moving slightly and a shadow moving away. I wondered if the neighbors had left it open the night before, had seen me out on the porch facing their window, looking—for all intents and purposes from their perspective—into their home.

Knowing what sort of reaction that would provoke in myself, I decided to move to a different chair. Now I face more northeast and have a tunnel view up the block, lined with trees, busy with foot traffic—I even saw another guy wearing shorts walking past my house just before I came up to write this entry. Really??

I digress. Now, the only neighbors whose windows I face are the overly prudent family who would prefer to impose themselves and their morality on their neighbors rather than simply hang heavier drapes themselves. (The picture window in their dining room remains, to this day, bare.) But the far end of my porch and then some bordering bushes and trees block out all of his windows from the vantage of my new seat.

So now, if I’ve been harboring a long-silent Gladys, she’ll have to be content with a narrower view full of strangers to observe and trees too far away to make out any meaningful detail. I think she’ll live. I’m not so sure about those guys in the shorts though.

Vigor

I went back to sleep this morning until quarter to six after waking at four. Dumb idea, trying to get more sleep in the morning. I’ve learned I’m better off getting up and trying to take a nap later, but it was so late by the time I got to sleep last night and my physical pain was still so prevalent when I awoke that I just didn’t want to slide my feet from under my warm comforter to sit in my office or out on the porch.

Eventually, slowly, after much ibuprofen and coffee, I did make my way out onto the porch, bringing the copy of Doctorow’s Homer and Langley that I ordered online. I’m supposed to be reading light fiction, and until now it hasn’t been all that taxing or even provocative (which isn’t to say that I wouldn’t recommend it). But this morning I reached the point in the novel when the narrator realizes for the first time the full consequences of his blindness, understands fully that he is at a disadvantage. This blow to his self-image is nearly as damaging as his further conclusion that love will forever elude him.

In describing this moment, the narrator explains that he’d lost “the mental vigor that comes of a natural happiness in finding oneself alive.” I wonder, do people really feel that? Mental vigor? Natural happiness? And from finding oneself alive, no less.

The Young and the Rested

Where would I be without my two a.m. sweat-drenched epiphanies? Yesterday’s appointment with the new (to me) specialist and the anxiety it produced must have been playing on my mind last night. I awoke, shivering and nauseous, but momentarily clear in the head about my nervousness. There was quite the list of reasons, most of which have slipped away in the process of waking. Which is fine, for a change, since the ones I recall are enough for me to think about. I don’t want to be sicker than I am now; I don’t want to be in more pain than I am now. And right now, getting better for the long-term means getting much sicker in the short-term.

Who in their right mind would choose twice weekly injections of a drug specifically designed to kill everything in its path? And a painful shot at that? Ok, not everything in its path. And we’ve established I may not be altogether in my right mind at all times. But still, I’ve drug my heels about antibiotics since my early twenties. I harbor a strong pre-Lyme hesitancy about antibiotic overuse and its being a significant contributing factor to our demise as a culture. I recently read some interesting articles about MRSA, Norway, and their successful anti-antibiotics campaign. Wait, that takes it too far; I think the campaign is really more for awareness and the judicious application of antibiotics, not their outright abolition.

I digress with increasing frequency these days. I fight my instinct to comb over what I write and tinker with it, check and recheck for wrong words, wrong usage, the language issues that creep into my speech. But I resist the urge to tinker for the same reasons I allow the digressions: there’s not much use fighting them and these entries should reflect not only what I think my brain is up to but how it’s really functioning. Granted, I’ve written all of these during my best early-morning hours. It still takes me far longer than it should to string these words together. But I couldn’t do it at all after noon.

Using Word to draft these posts cheats, in a way, though I could take the auto-correction feature off and see how terribly I’m really typing. I can see the letters rearrange themselves on the screen as if by magic when I’m reversing them or throwing them together in a barely recognized heap. It’s only technology, which to some today even still would seem like magic with the things we can do, smart phones, blue tooth devices for them and our cars, gaming devices, homes.

One of the Christmas commercials this year assured me (in shouting voices) that the only gift that would not be greeted with raised noses of sneer would be this voice-recognition software that types as you speak, among other things. How can it capture punctuation, a necessary means of maintaining order and clarity as well as a subtle means of communicating tone or irony? What would Jonathan Swift’s reaction have been to this? To use the software to compose an open letter to the public, only after first discovering its pitfalls so that he could most effectively bring home his point? Ending all sentences with question marks and all inquiries with periods? No, that last would probably have been too facile for him, though it’s the best I can muster at the moment.

I remembered this morning, as I sat on my porch and let my mind wander, that at one point yesterday I’d started to go off on a ramble about feeling how my body and mind had betrayed me, in ceding to the onslaught of spirochetes. I’d lost the train of thought entirely yesterday when I’d struggled to find a word or a phrase and couldn’t, then started down an unrelated path instead.

I still feel that way, betrayed. I suppose I couldn’t deny being easily distracted, as well, but I’d been referring to betrayal, of not being able to rely on my body to push through and get whatever needed doing done. I’d been reminded of that yesterday morning, I don’t remember now what I’d been doing. And then later in the afternoon as I got ready to go to the doctor, the tremors in my hands and neck picked up. Sleep had eluded me, of course.

Before I got sick, this would have been a small consideration. I trusted my body entirely to get me through anything. And that which doesn’t kill us only makes us stronger, right? Wrong. At least in the short-term for me. I had to sit down and rest yesterday before finishing getting dressed. I’d gotten as far as my underthings and one sock, and I fell back onto the bed with my right knee still raised, poised at the ready for me to finish putting on the other sock. Thankfully winter cold eventually roused me. Had it been summer, I may have just called to cancel the appointment altogether. Or, with my luck, been suddenly overcome with the sleep that I’d been chasing since eleven in the morning.

This was the third rest I’d taken since getting out of the shower. I’d had to sit down to put my lotion on as soon as I’d gotten out of the shower, and then had gotten light headed and weak-kneed while drying my hair.

This morning, I began not knowing if this new course of treatment is the right thing to do. I wish I could say that all has become clear, that I now see how ridiculous it is that a relatively strong and active young(ish) woman takes two hours to get ready to leave the house. (And as one who values her time this rankles all the more since I certainly don’t close the door behind me to greet the world feeling refreshed from having spent three hours resting in bed nor looking like Heidi effing Klum having spent two hours getting ready.)

All remains unclear because I know that as bad as that sounds, I’m really quite fortunate to still be driving myself around, to still be able to shower and dress without assistance, to have any hair left to wash and dry. But these last vestiges of health and independence could fall under the ceaseless, munching spirochetes and whatever damage this a-bomb of an antibiotic stands poised to bring forth. I don’t want to get sicker, but I can’t sustain this half-life either. Maybe looking forward to jabbing me in the bum a couple of times a week will help offset my wife’s caretaker burnout.

From Dawn to Dusk

Later this afternoon I have an appointment with a new Lyme specialist. Until a couple of days ago I wasn’t nervous. Maybe the last minute rush of the holidays distracted me. My daughter being with her dad and not under my feet, gossiping about her day also leaves a void into which these troubling thoughts creep.

Which is ridiculous; even the worst that could happen doesn’t bear that great a threat here. There’s no reason to be nervous. The task of bringing forth a complete and concise personal narrative including lists of symptoms, treatments, reactions and so forth is daunting, to be sure, but nothing fearful. I spent much of yesterday afternoon gathering notes and creating a timeline since I know I’ll forget nearly everything relevant the minute my bum hits the waiting room chair.

So at least I’m prepared for the practicalities of the grueling marathon crammed into the timeframe of a sprint that will comprise the initial intake appointment. As much as I can be I suppose. The appointment is late in the day, and about thirty miles away, which wouldn’t be so bad if it weren’t in the direction all of the other commuting lemmings will be heading. But I’m fortunate enough to have a comfortable vehicle and I just got two new CDs. Plus, if I time it right (and if the doctor is running as late as I suspect she’ll be), most of the lemmings should be off the road by the time I’m done and I should be able to make it home just before I hit my wall.

Now that the day has arrived, I wish I’d waited for an appointment later this month but earlier in the day. Or had asked my wife to take the afternoon off to go with me, hold my hand, and give me a red sucker if I’m a good girl and don’t cry. Crap. I didn’t used to be like this. On mornings like these, when I can remember being different from how I am today, I sometimes sit and wonder at the damage the spriochetes are doing to my brain. I miss it.

Early this past spring, when the decline in my cognitive abilities was most noticeable, I began wondering if I would find an increase in other abilities. If I was suddenly struggling with language, for instance, a medium as comfortable to me as air, then would I finally find myself able to sketch the way my porch railings threw shadows onto the worn slats? (Alas, I tried and the answer is no.)

Instead, what I found is that I’d rather sit with the setting sun on my face, eyes closed, ears open to the sounds around me than sit trying to trace what I see. I’ve also found that timing really is everything. My days have fallen into a natural rhythm: chores and tasks requiring language or planning skills are best done before noon; errands are best run between the hours of ten and one; bed is the best place for me to be between one and three (for myself and everyone else); and anything most effectively accomplished with limited cognitive interference will bear the best results if tackled before dawn or after dusk, as my brain is more than happy to comply with any and all requests for non-interference at those times of day. And with that I should sign off, bundle up, and go back out to my porch to watch the sun rise before I begin over-analyzing everything I’ve written and end up posting nothing at all.

Queen for a Day

Those of us with Lyme know all too well how utterly draining it is to have to socialize when we’d really rather be in bed. Everyone has these kinds of days, but the elements of the spriochetes, Lyme rage, and inestimable exhaustion combined with the expectations for holiday cheer can come of no good. To have my worst week of the month fall when the demands on my time, patience, and limited social niceties were greatest seems like some cosmic joke and I fail to see the humor. (Affecting the stiff upper lip: “We are not amused.” Has anyone seen my tiara?)

I awoke this morning, as I have most days this week, wondering which of yesterday’s events made a strong enough impression that I actually remember them in sufficient detail to pass them on here, and hoping what I do recall might possibly be worth any stray readers’ time.

What I remember most about yesterday was the daunting effort it took to control that mean cutting voice in my head uttering unwarranted obscenities at my wife because she wanted to spend the day with family and I had to choose between being alone at home or feeling alone in a house full of people who love me.

The obscenities went unuttered. I showered and went with her to the family, with the understanding that I was going to take the car and go home when it was naptime and she was to hitch a ride with someone else. Fair enough. As long as I said as little as possible, we should all be safe.

The previous evening, Christmas being an important holiday for the family, my wife and I were at her parents’ house and I had long since needed to go home. She had said something hurtful to me, more thoughtless than anything, in front of her parents. The voice in my head exploded with rage, the kind that makes your palms sweat and limbs shake, the rush of cortisol and adrenaline. I had to look at the ground and remind myself of what I’d realized a few months ago: I may not react over nothing but I overreact over most things during rage week. I kept my voice low and even (the tone that makes the hair on my wife’s arms rise up), said something to end the conversation and walked from the room to gain some distance and perspective. Her parents have yet to experience the joys and wonders of rage week.

And yesterday, at about noon, I noticed people were starting to talk about food. I’d been stationary for too long and needed to get up, plus I felt that burst of energy I sometimes get about an hour before I hit the wall. So I went into the kitchen and was fetching leftovers out of the fridge when a family friend, who hadn’t seen me in months but had been hearing about my worsening physical condition from the family, remarked how surprised he was to see me so active.

My immediate reaction was to squirt him in the face with the mayo I clutched in my right hand. He didn’t mean to insinuate that the reports had been blown out of proportion, or that I was faking an illness. I think he was genuinely surprised, but he didn’t notice that my feet were firmly planted in one spot, most of my weight on my right leg to give my sore left hip a break. Nor that I wasn’t lifting anything heaver than the condiment cum weapon. He certainly wasn’t around an hour later when all my energy dissipated, and I could hardly muster the attention to watch tv, blinking only when my eyes got too dry to remain open any longer. Half vegetative, probably, I would have looked from the outside. Almost time to be turned, lest I develop bedsores.

Instead of giving in to temptation to scream at him and everyone else (I know for no real reason at all), I shrugged when he asked about the pain (I’m going to be in pain whether I’m sitting or standing so it doesn’t matter; it’s good for me to get up and move) and then launched into an explanation about getting close to hitting my wall and wrapping things up before I headed home for a nap. Then I wondered why I was explaining myself to him. To anyone.

The anger evaporated on the drive home, helped in part I’m sure to my blasting the radio so loudly that the side mirrors vibrated. Some music was made for that. Not all. And not in residential neighborhoods. The open road is fair game, though. When I got home, I was able to take a nap, to actually sleep for a change. And I slept well last night, too, to awaken this morning feeling more refreshed and comfortable than I have in weeks.

Of course, I have no social obligations whatsoever today. Apparently the cosmic joke wasn’t a one-liner. (Found the tiara. Still not amused.)

Armed for Battle

Perhaps my efforts toward embracing social isolationism have not been as successful as originally thought. Yesterday I’d been confident that I’d be able to take a short nap without the interruption of holiday calls and texts. No sooner had I posted my entry than my phone beeped, alerting me to the first of twelve messages over the course of the following few hours.

It reminded me of when, years ago, my (now) wife and I sat down to draft an invitation list to the wedding reception we’d been planning at the time (and have yet to celebrate, by the way). I’d been appalled at the number of people; I would never have guessed that I knew that many. And those were just the ones with whom we wanted to share a special occasion, not even everyone whose feelings may have been hurt by not receiving an invitation because there were a few tussles over certain people not being on the list—in the interest of the greater good was my argument, which won out over personal interests and the desire to not cause personal slights.

Because my daughter is with her father and his wife for the holidays, the mom in me can’t sleep with the phone turned off. As ridiculous as it sounds, it’s true. Rationally, I know that if anything should happen there are no fewer than six people my ex could call. In fact, now that I think about it, he may not even call me directly should an emergency arise—he may call my wife to make sure I wasn’t alone when I got the news. They’re both like that, my ex and my wife. So fortunate we all are to get along. But these things do not warrant further examination.

The end result of my napping phone neurosis was that my wife and I spent Christmas with her family, both of us with very little sleep and one of us in great pain and a foul mood (guess who). If my Herx cycle stays on course, I should feel better today. Little good that did me yesterday, though.

Both mature mother figures of the family (as opposed to my wife, myself, and my sister-in-law who are all moms in our thirties) are currently experiencing great physical pain. One of the women has lived with pain all her life; the other has not had this constant companion. All of us daughters noticed the difference in how the moms coped with the pain, how it bled through in their behaviors differently.

One wore it plainly in her facial expression and body language. Her syntax and diction even changed, along with the topics of conversation straying from their normal positive subjects. I’ll have to pay attention to the language shifts, though. That could be interesting.

Again, I digress. A person would have to be on a familiar basis with the mom who’s known daily pain to detect how much pain she was in. Partly because she’s learned to push through it and probably somehow compartmentalize it in her head. She distracts herself with multiple simultaneous conversations as a primary coping mechanism, I suspect, and this brings me to the other part of why it is difficult to detect her pain. She herself isn’t aware of it.

Last week she seriously injured herself and a dozen x-rays (insisted upon by her husband, otherwise she never would have gone to the doctor at all) revealed the full extent of the damage. She needs surgery and has been instructed to limit her physical activity.

We discussed this briefly last night, she and I, that to the two of us it isn’t all that remarkable that she would have hurt herself to the point where surgery was required to repair the damage and her own assessment had been that it was just a bad sprain. At that point in the conversation I looked over at the other mom in pain, and she had her head back and her feet up in her recliner, eyes closed for a moment. But her face was not restful; even then her eyes retained that squinty expression.

Meanwhile, in that split second, the mom I’d been talking to had struck up two more conversations, so I went into the kitchen to fetch myself some coffee and Bailey’s. Again, I know my doctors would not approve. My sister-in-law even raised a brow at me but only grinned when I said it was worth the seizure risk. I think her eyes may have strayed to the living room to assess additional risks, but she would deny this if asked (as she should).

They must have been on my mind in my sleep, the moms in pain and how differently they’re coping, because this morning on the porch my thoughts turned to my daughter. She’s now a teenager, and she’s blessedly known little physical pain or suffering. But the blessing has a flip; how will she cope if she’s injured?

She was twelve before she fell off a scooter and scraped her palms for the first time. Only the shame of crying in front of her best-friend kept her tears at bay, she later told me. I hadn’t been there, but later I heard all about it and how unfair she thought is was that she was wearing a helmet, elbow pads, aaaaaaaaaannnnnnnnnd knee pads, but it was her hands that got hurt.

Mind you, she’d armed herself for battle better than I had when I rode my bike down mountain roads at her age, with nothing between my body and the gravel but air. I’d been fearless at her age; still am, relatively so, about some things. But she’s always been a cautious child.

My wife frequently complains that we are raising a mini-me, that she has to live with two versions of her wife: one grown and the other still a teenager, that we thus have an unfair advantage (three women living in one home with no offsetting testosterone is all I have to say on the subject for now). In thinking, this morning, about the ladies last night, my own crabby mood and pain, my cautious child and the own risks I’d taken at her age, I realized that we aren’t raising a mini-me at all. We’re raising my grandmother.

She’d passed on by the time I met my wife, so she probably can’t see the similarities, but they’re there. Our child is a clear blend of her kind father and my cautious grandmother. When my daughter was born, my first impression was of how very old she seemed. And prepared. Not traumatized by the birth at all.

I remember, as a child, my mother complaining that my grandmother had been born old. And since my mom appears to have been born with a feather up her rear, so ready is she for flight at any moment, my grandmother’s reserved nature rankled her last nerve. I would bet it still does, even though this month marks thirteen years my grandmother’s been gone.

Holiday Cheer

Another four AM morning, but without the compensation of my usual seven hours sleep or a beautiful dawn sky. The air this morning, too, carries a damp bite that—in spite of my many fleecy layers—seeps into my joints and limits my time out on the porch.

My coffee yesterday may have been free of grounds, but in the end that bore little indication of how my day was. I spent most of it in bed with a heating pad, seeking but not finding comfort and rest. My wife worked yesterday morning, but got the afternoon off for the holiday. She, too, was tired so we took a nap until it was time to have dinner at her parents’ across town.

Even after that additional couple of hours of rest, I was in no fit condition to go with her to dinner. She went, though, which in a way made me feel better; I would have felt guilty had she stayed home just to be with me. But at the same time, I’d hardly seen her all day and I was feeling selfish. Not that it would have made any sense for her to have stayed with me anyway, since I was crabby and would sooner or later pass out.

I can’t remember what we’re doing this morning, if anything. She was just getting to sleep as I was rising, so unless her alarm goes off I’m not waking her. I know we’re having dinner with her family, but I have forgotten what time. Probably early. It’s a good thing we have so little to prep. Perhaps I’ll have time for a nap before we go. One good thing about being a social isolationist by nature is that I won’t be fielding well-wishing holiday calls during naptime.

The idea of this blog still surprises me. I hold no grand hopes for its future; in fact, I strongly suspect absolutely nothing will come of it. I’ve not told anyone about it and only a few people know I’d even been considering it. I don’t think I will tell anyone, either. I’d like to just let it be and see what happens without my intervention.

The idea of blogging in general seems unnatural to me, but at the same time appealing in its anonymity. Those who know me well and stumble upon this would not be challenged to identify me. So in that regard, even the anonymity is limited. But who else would be interested in reading my thoughts? In spending their time on the mundane things that eat up my time and attention? I’m curious.

Predawn Divinations

The dawn sky this morning was striated with what my grandfather would have called skyblue-pink clouds. He was color blind, and as a child I could not comprehend what it meant to live in a world without color. I would pester him to describe to me what he saw, but he had no means of translating. Eventually we settled on mud soup, and somehow we got around to skyblue-pink being his favorite color. I forget how, but now writing this I suddenly realize that at the time, I’d been fiercely torn between pink and blue as my favorite colors.

Because of the fair coloring I sported throughout my childhood, nearly every article of clothing purchased for me was pink. At around age eight or nine, I began to fall in love with blue. My grandmother did not pick up on the hints, though, and continued buying me skirts and shirts in every shade of pink. Every once in a while a blue blouse would sneak into a bag, and I knew my grandfather had actually participated in shopping for a change instead of sitting out on a bench in front of the department store, keeping guard over my grandmother’s bounty.

It turned into a family joke between us, his favorite color, the pink skirts he’d staple into shorts as soon as we got out of my grandmother’s line of sight, which would have impressed any bird of prey. There was no escaping her hearing; my grandfather and I could have been three hundred yards from the house and she’d still have heard him curse—and chided him for it. I didn’t see the fuss at the time, but then again, I currently pepper my speech with words that would have made my poor grandmother’s fingernails curl. And I love, savor each and every word.

Not every day in Lymeland begins with a beautiful dawn, nor with fond decades-old memories that feel like yesterday. Nearly every day, though, begins with me rising well before dawn, most days because my body pain prompts me to get out of bed and move. I try to do so slowly, as I tend to lose my balance early in the morning and have no depth perception until I fully wake. And since I usually fail to plan ahead and prep my coffee the night before, I’ve learned to brew a pot by Braille. Rather like divining through tea leaves, the ratio of coffee to grounds in my morning cup has proven to be a strong indicator of how my days unfold. I’m on my third cup this morning (my doctors would not approve) and have yet to find a single stray bit of bean.