Mush!

Sitting on the porch this morning, my neck and shoulders stiff and painful from the spiros and too little sleep, I started to complain to myself. Grumbling, shifting and settling, looking for a comfortable position in my chair and finding none, I berated my recent party-animal lifestyle.

On Wednesdays, our dear friends come over to cook us dinner and check in on how we’re all doing. I love that they want to help out, love seeing them and appreciate that they’d set aside an evening each week for us. They are part of our family, but it means a late night for me. And one night a week of going to bed after nine isn’t so bad. No one expects much socialization out of me after seven anyway.

Last week, though, our Thursday and Friday evenings also included time with friends and missed bedtimes. Consequently, I spent most of last weekend in bed recuperating. Again this week, we were blessed with a meal cooked for us in our kitchen by our best friends on Wednesday. And again yesterday, we had dinner with a different set of good friends—the same ones we spent last Thursday with.

What we did last Friday escapes my memory at the moment and I’m too lazy/tired/sore to get out of my chair to fetch my calendar. Whatever it was, I hope today isn’t a repeat. I can’t handle these late nights—and how pathetic that staying up after nine is late now.

That may be the most difficult thing for me to adjust to with this being sick and getting better business, that I can no longer count on my brain to push through whatever lies ahead and expect my body to ably follow. I recognize this fact cognitively; daily the pain and exhaustion remind me of my current frailty. But I am prone to forgetting, falling back into habits, willing my body to keep moving through the pain.

Except it doesn’t work anymore. One or the other is likely to fail, frequently both with my brain going one way and my body another. Or neither going anywhere, just spinning in place. A few weeks ago, I tried to do laundry while herxing. I may as well have tried to walk twenty miles for all the sense I showed that day. Not once but twice I found myself standing in front of the washing machine, crying from the body pain, my brain off on some tangent of rage and self-pity, unable to move.

My arms and legs refused to inch forward, and my brain flipped me the bird when I tried to get tough and told myself to suck it up and just move already. Our laundry facilities are in the basement and the comfort of my bed is two stories up. So while I can conserve energy and toss the (mostly mesh) laundry bags down the stairs, I still have to cart the clean clothes back up with me. In theory. That day, I ended up leaving it all downstairs and asked my wife to help bring it up for me when she got home from work.

The thing is, getting stuck down there shouldn’t have happened once let alone twice. I’m not a stupid woman, but I can be astoundingly dumb sometimes. And stubborn. Rather than admit defeat and ask my wife to always bring the laundry up for me, I’ve been whiling away my sleepless afternoon rest hours coming up with ridiculous methods of getting it up myself.

Obviously, splitting the heavier loads into smaller, lighter ones would only mean more trips up and down the stairs. I tried tossing a light load up the stairs, but it is neither as effective nor as satisfying and watching it fly down, skimming the risers and landing with a soft thud. Tossing the laundry up required more energy than carrying it (duh) and resulted in a flurry of panties and socks. (I will admit, throwing the laundry up the stairs was inspired more by anger than a desire to conserve energy.)

A number of rope and pulley systems have presented themselves, but in reality I’d probably trip on the rope and do some serious damage. I slip down those basement stairs enough as it is.

Sadly, I am left with little choice but to ask for help when I need it, to continue to work on recognizing when that is, who to ask, how to ask. Who knew it would all be so complicated? Now I remember why I’m so mulish. I usually fail right at the gates in not recognizing when I need help until it’s too late. If I do manage to pass this hurdle, I fall at who and how. I went out on a limb a while ago, asked a friend to help me with something. It didn’t work out. I never got an answer either way, had to come to the conclusion myself and let go of the hope for what I wanted. Still today I don’t know which of the three were off, probably all. But it hurts and makes me ever more reluctant to reach out.

Our dear friends who come and cook for us, I didn’t ask them for their help. The one I call Sister just announced one evening shortly after the holidays that she was coming up once a week to see me, then her wife got on board, and it morphed into this wonderful weekly dinner. I have a feeling that if I’d asked for it, the outcome would have been different.

Maybe the best course of action is to maintain a position of acceptance for the help and love that come my way, show my gratitude for what I have, and buy more panties and shirts so I don’t have to do laundry when I’m herxing. That sounds like a good plan to me.

Lymeland City Center

Yesterday afternoon I needed to call my mother in law to double check my father in law’s middle name. I would have called him, but after he retired he found he wanted a part-time job, and what he does sometimes calls for him to work very early in the morning. So he often naps during the day. Much like me. So I didn’t want to wake him, and I’ve been meaning to check in on how she’s doing anyway. I just keep forgetting.

I’d been paying bills and needed to get into one of the accounts still left in only my wife’s name. The site didn’t recognize my laptop, so one of those security questions popped up. I was fairly confident that I remembered the answer, since it’s the same as my own dad’s, but ended up second-guessing myself into a phone call with my mil.

At the risk of publicizing what is not mine to share, she has been struggling with physical pain lately, as well as the depression that comes from being homebound, in pain, and unable to sleep. I’ve been too wrapped up in my own worst herx ever to have checked in until now, so after I confirmed my Lyme brain did actually remember the middle name, we chatted for quite a while about how she’s doing and what it’s like for me with the Lyme.

Unable to multi-task these days, I pushed the bills aside and described the emotional rollercoaster of life in Lymeland—where, like the tides on Earth, the tides of my own energies rise and fall in sync with the moon. Four days before the full moon, my mood dips, I struggle to see the positive side of things, and generally try to keep to myself. As we draw closer to the full moon, I become emotional (lots of tears), then flat-out crabby (grumbling about the lack of positivity in a world full of a-holes and idiots), and finally the day before the full moon, the Lyme rage express pulls into Lymeland city-center and I fly off the handle and lose my head over the smallest things.

Throughout this period, I lose most of my physical energy and find it almost impossible to concentrate on any one given subject for more than a few minutes at a time. Sleep becomes elusive as my physical pain ramps up just after the full moon and remains unmanageable for the next four days.

As I explained to my mil, and I probably heard this from someone else so I’m not taking credit for the idea, I think my body’s war with the spirochetes rises and falls with the moon’s pull, with bloody battles waged most ferociously as the moon becomes full. Thus the exhaustion and rage—maybe I need it to fight the little buggers, or maybe it’s their own since I certainly don’t recognize it as mine. And then, in the days following the full moon, my body struggles to rid itself of all those fallen casualties, both Team Spiro’s and my own. Thus the muscles and joints filled to stiffness and agony with biotoxins.

At least she listened without doubting the veracity of my story. I may not always tell the whole truth in my personal life—I value privacy and discretion a great deal and am careful to avoid pointed questions or, if pressed, to provide vague half-answers that don’t qualify as lies. But neither do I go around making stuff up, nor do I exaggerate existing conditions. I have Lyme. The truth is horrific enough.

I don’t want to get onto my soapbox about all of the doubting Thomases out in the world who are dead certain that Lyme doesn’t exist, even though they themselves have not walked a minute in my shoes. I don’t want to rant about my impotent fury at having my integrity questioned when I take care to be honest, avoid lies, and honor the points of views of others even if they don’t agree with my own. Crap, I ended up on the box anyway.

And I lost track of what it was I did want to say. Something about fiction—ah yes. I wanted to end on a positive note. Last night my wife and I sat on the porch, and I was rambling on about an idea for a longer work of fiction I’d remembered that afternoon. We were laughing and the story was becoming increasingly outrageous. And she called me a goober. Affectionately, of course. She hasn’t called me that in a long time. I haven’t been silly like that in a long time. I know I have a long long way to go still, but I think I’m starting to feel a little better. It may be temporary, a calm before the next herx storm, but I’ll take it. I’d be proud to be Goober, Mayor of Lymeland. As long as those negatives have been destroyed. . . .

Living with Dignity

Regarding my vitriolic soap-box post from yesterday:

Living with dignity includes having a wife who has found the courage and strength in her kind and soft heart to learn to give me painful injections twice a week, who calls me a trooper when it’s all done and I haven’t cried. I know it hurts her to hurt me.

Living with dignity includes having friends who come to our house from more than thirty miles away in rush hour traffic (along a treacherous highway in winter conditions) to cook us dinner every Wednesday because we need the help. Friends who won’t allow me to even do some prep for them on the days I’m feeling up to it. Friends, who over the years of supporting each other and each other’s families, have become our own family. (I should be saying sisters who come to cook for us and watch Food tv, since I have been calling one of them Sister for years now. But my wife has a blood sister, and it can get confusing since I don’t think she thinks of my sister’s wife as her sister-in-law. We joke, actually, that they are instead the archetypal bromance.)

Living with dignity includes having family who come to sit with my wife in the evenings after I’ve gone to bed two or three times a week. My sister-in-law lives only a few blocks away, in a neighborhood safe enough to allow after-dark walks (so long as common sense is exercised).

Living with dignity includes having a teenage daughter who strives to be the best at everything, to not let me down, to not break the rules and stress me out for fear of making my condition worse. (We recently had a talk about this and I hope she feels less pressure about it. I need her to be a teenager because I need to be a mom.) But everyone knows the adolescent instinct is to sense weakness and take advantage. And while she has her moments when we both get to do our jobs (she making mistakes, the moms yanking her back in line), overall our worries and troubles are nothing compared to what mothers of teenagers around the world cope with.

Living with dignity includes recognizing these blessings and the people bearing them, loving them and thanking them. And learning, finally, at long last, how to accept gifts graciously. (I am, though, making my sister homemade cinnamon rolls for next Wednesday. I should be feeling great these next ten days or so.)

Today I am blessed with an attitude of gratitude. The herx must be over. Yippee!

Whose Death is this Anyway?

When I first started treatment and began killing these spirochetes in earnest, my naturopath encouraged me to recognize that the all-over body pain and emotional distress signaled the demise of the bugs and my body’s attempts to deal with the onslaught of toxins released in the process. The worse I felt, then, the more encouraged I should be since more pain meant more dead spiros.

I embraced the theory and reminded myself each time I herxed of what she’d said. The naturopath, too, would have to remind me as well, since my brain has become more a sieve than the vault I once enjoyed. When I was still able to work and my colleagues would comment on noticing me walking with either a pronounced limp or a cane, they would ask about it, and I would begin rattling off the “good news” that I only felt like death because the treatment was working.

Based on the confused, concerned, and sometimes outright amused expressions with which this perspective on the pain was received, I suspect half of my colleagues think I’m nuts and the other wonder what kind of quack I’ve gotten myself involved with.

Now that I’m no longer working, my days of pain remain uninterrupted by such inquiries. My poor family is well acquainted with the herxing and they just try to stay out of the way and not poke the bear. And while I found the questions about my health irksome, nosey, and sometimes of questionable intention at the time, they at least provided me the opportunity to remind myself that the pain is a positive sign.

That key concept slipped through the cracks this month as I experienced the worst herx yet. I’d expected more pain, less mobility, and utter exhaustion because I’d started the antibiotic injections at the start of this cycle. Still, when the storm broke and I awoke at a two in the morning crying from the pain, I found myself utterly unprepared for it and laid there in bed, wondering why I keep waking at all.

My body, mind, heart, spirit filled beyond capacity with pain. I smelled it, tasted it, felt it collecting in my neck, shoulders, back and hips. I couldn’t shake it with meditation, prayer, gentle stretching, breathing, food, water, coffee, hours on the porch at down and duck. Nothing. I felt overfull with my own death and spent most mornings and every afternoon crying inconsolably for my daughter, my wife, my family, my friends, myself.

Now that the emotional distress of the herx has passed and I’m moving into the bed-ridden pain part of the cycle, I’ve regained the necessary perspective and posted a note by my bed: It is not my own death I feel; it is the spriochetes’. We’ll see if this works next herx. I’ll probably see it, tear it down and burn it in a fit of pique. The anger and frustration that course through me still amaze me.

Recently, I got into a tiff with the administrators of my health spending card and chewed the customer service rep a new one—not as a blameless cog in a corporate wheel but because I’d caught him out in a lie. At the end of the first week in January I still hadn’t received my new card. My old one had, of course, expired in December. First the rep tried to blame me for not ordering the new card. Then he had to back down and admit that the company really doesn’t want the barrage of consumer calls requesting new cards and that, yes, their system was set up to deliver new cards in a timely manner.

We disagreed about the timely manner—and he lied and told me a card had been sent out just two days previous. I knew for a fact this wasn’t the case. I had already checked online and their own voice-mail hell system had told me a new one had not yet been issued before transferring me to him—and he was the escalation manager and not just a ground-level operator so the system clearly knew there was an issue. I blew my top and told him that I was dying and the last thing I needed was some [insert favorite epithet here] jerking me around and wasting my last days on idiotic bureaucrats who didn’t have the intelligence to keep their purported facts straight. It’s a sad sad day indeed when the Lyme brain can track facts better than those fools.

Then the little f-er [my own favorite epithet] had the gall to tell me he was sure I’d be better soon. I snorted and told him only after I was in the ground would I feel better and hung up. (For the record, I am donating my body to science since I can no longer be an organ donor. Anything that’s left is to be burned.)

Two hours after the call I got an automated email that my new card had been issued. And I did get the card in the mail five days later. It took them ten days to process my requests for reimbursement for the doctor’s appointments and meds I’d had to pay for out of pocket while waiting for the card, since I couldn’t very well cancel my appointments—not just for the protection of my health but because the disability coverage insurance company is dissatisfied with the pace at which my treatment plan is progressing and will extend my claim now only from one appointment to the next, leaving literally only 24 hours for my doctor to gather her notes and fax them to the company before my “agent” closes my claim. Again. Stress much? I don’t recall that being included in my treatment plan. . . .

Through this, I’ve come to the conclusion that death with dignity comprises more than the intentional act of cutting short one’s final days of suffering and misery. It should also be about having doctors who don’t roll their eyes at you, pat you on the (inflamed and painful) knee, and assure you that they know aaaaallllllll about Lyme and that you don’t have it. On the first effing visit ever with the doctor, despite the documented lab results in my file indicating otherwise.

Dying with dignity should include not having to duke it out with the insurance companies about treatments not being covered, about disability leave dates being extended in two-day chunks as a means of blackmail for additional documentation and treatment plans (apparently, having had my new medical insurance for only 19 days, the company handling my leave from work feels it is taking too long for an evaluation by a specialist—forgetting that I’ve had five appointments with three doctors since the first of the year and have absolutely no control over when the specialists get back to me—and that yes, they, too are probably inundated with referrals because surely I’m not the only one who clung to life through the last weeks of December, waiting for her insurance coverage to change).

Dying with dignity should include the safety net for which I worked myself (quite literally) into the ground. I gave twelve years of honest work to my employer—the longest damned temp job ever I’m sure. I only took the job because I have a daughter to feed and held onto it because my child kept eating. Imagine that.

To have my integrity doubted now fills me with such rage I want to take photos my myself to send to the insurance company, my pale yellow skin hanging off my unpadded skeleton—ask them if they think I’m really healthy enough for work. But then, there goes what little dignity I have left.

Dying with dignity should not include sleepless nights induced by maternal guilt for having squandered my child’s college education savings on treatments that didn’t work for me and weren’t covered by my medical insurance (the treatments I underwent work for many many people). It should not include having to choose between getting on the long list of homes awaiting foreclosure and feeding my child or paying for my meds. It should not include hours spent in the afternoons wondering why I’m still here, dragging my family down, trying to cling to the last vestiges of positive thinking and peace I’ve acquired, trying to rest and get better so I can continue to live with dignity.

Maybe that’s the problem. Maybe there is no dignity in death, by its very nature. Maybe there is only dignity in life.

Lymus Interruptus

Most people would probably agree that trying to have a conversation with someone who constantly interrupts borders on insanity—pointless, frustrating, unlikely to change. I’ve never had much patience with people for whom it seems impossible to hold their tongues. And to my knowledge, interrupting others had never been an issue for me. I can’t recall people complaining to me about it, and I’m quite sure it would have made my wife’s Top Ten list of personal habits to “work on” if it had been issue before now.

Sure, the lively exchange of ideas between or among friends is one thing, when everyone’s brains are clicking on overdrive and the thoughts come faster than words. Or when we exchange heated words, our own anger or hurt or fear outweigh our senses of social propriety and we tend to bound forward, heedless of the one with whom we are engaged in battle.

But in the course of normal conversation with friends and family, lately I have developed the annoying and shameful habit of interrupting others when they’re speaking. It’s terrible, and I don’t even know I’m doing it until it’s too late.

I find myself, too, not only using the wrong words or forgetting words altogether, but giving voice to thoughts I would rather have kept to myself. So far it has been mostly about inconsequential things, or when I’m in one of my increasingly frequent moments of pique, to which I will admit I’ve always been prone. But I used to be able to control what came out of my mouth, carefully weigh my words.

Now I’m lucky to remember the end of a sentence once I pass the half-way point. And if I’m interrupted by anything, I not only lose track of what I was saying but of what the other person was saying, and much of the time what we were even talking about to begin with.

My wife suspects this drives my new annoying habit of interrupting; that I’m afraid I’ll forget what I wanted to say in response to something in a conversation, so I blurt it out. She’s probably right. But still, it’s rude and it drives us all crazy. It assumes that I know, before the other person has finished speaking, what they were about to say, have processed it, and have readied an appropriate response. None of which is the case when I’m drawing breath to speak after my conversational partner has uttered only five words.

Soon no one will want to talk to me at all anymore. As a lifelong social isolationist, three months ago I would not have considered this a great blow. Then, I still worked full time and my days filled with coworkers, acquaintances, friends. Being polite, friendly, professional drained me, more and more as my physical health declined. I longed for days uninterrupted by the voice of another human being, unfettered by the expectations to play nice and get along when I hurt so much I really just wanted to go back to bed and cry.

At the same time, though, I resisted taking a leave from work because I didn’t want my days to be filled with only my own voice. I wanted the option to go back to bed and cry, but I didn’t want that to be how I actually spent my days. But it is. And I am fortunate to have worked for the same employer for over a decade, to have the opportunity to take this time to get healthy without worrying too much about paying the bills and educating my child.

The only thing is, I’m not getting healthier. I can interrupt every conversation I have from now until I draw my last breath, and it won’t make me remember my words, won’t keep me from losing track of my thoughts, won’t undo the damage the spirochetes have done to my brain. And I can spend each day in bed, until my days are done and it’s time to donate this wreck of a body to science, but it won’t change the outcome.

I’ve undertaken this new course of antibiotic treatment because what I’ve been doing for the past year wasn’t enough for me. And it’s tough (duh). But I remembered yesterday something a friend, who is a practicing western physician and knows a little about Lyme, said by way of encouragement about this new treatment plan. It’s got an average 35% success rate—and that’s good! WTF? Talk about a light at the end of a tunnel.

After spending the next two years praying for either sleep or death (with no preference as to which method finally delivers even a modicum of peace from the endless unrelenting pain) I have a 35% chance of truly being better and getting my life back. Well, that is exciting news. I’ll no doubt interrupt at least half a dozen conversations today in my exuberance to spread the joyous word.

I just interrupted myself and thought it would be fun to go online and find out what else I have a 35% chance of doing, getting, or otherwise being impacted by. But as I sat looking at the screen, I couldn’t think of anything. I typed in “statistical probability” and the predictive software guessed I was looking for info on either the probability of the theory of human evolution being correct or whether life exists on other planets.

Where did we come from? Where are we going? And are we really as alone as we feel? Questions of the ages, and I am once again reminded of my mote-like existence in comparison to the wider world around me.

A Shot in the Dark

As I settled down to type this, I had to remind myself to sit up straight. My daughter would have a field day with me in the mornings, when I hunch over and shuffle through the house in search of coffee. Again today I got out of bed shortly after I woke at four, or I should say started to wake. I don’t think I fully have yet, and I’m slouching again already.

Yesterday I got out of bed about the same time, having “slept in” until about six the past week or so and paid the price for my sloth in unmanageable pain that lasts all day. I have no idea why this is, why additional sleep and rest would make me feel worse. But I’m not alone—I mentioned it in passing to someone else with Lyme and she’s noticed the same pattern. She doesn’t wake as early as me, but if she lingers in bed she too suffers from worse than normal pain.

Today I harbored no desire to snuggle back into the comforter and tempt fate. The weather is unseasonably warm and I wanted to throw on my sweats and sit on my porch. Of course, throwing of any kind presents significant challenges of late (unless we’re talking temper tantrums during rage week), so it was really more an awkward slithering than anything else.

The application of hard lessons and the rare opportunity to enjoy such a temperate morning were not the only things driving me from my bed today. Yesterday was shot day, and much of the meds are still amassed in my right bum cheek. (Why are they called cheeks?? Do we smile there and not know it? I know I’ve been accused of talking out my ass once or twice, but I don’t get the cheeks. If I remember, I’ll have to look it up when I’m done here.) (Crap. I just remembered that I have looked it up before; I just can’t recall the answer now.)

I digress, doubly this time. Shame shame shame. I’ve thought about editing out these side-routes and offshoots, the blue highways of Lymeland perhaps—the little roads that seem to wander off into nowhere, or into time warps where it seems the past three decades were just a dream. But I’ve been advised to leave them as is if I want these entries to offer up a reflection of my true interior landscapes. Or was it because misery loves company?

Not that I would say I’m miserable overall. Yesterday I was miserable, which brings me back to the shot. See, I knew the road would wend its way back to the interstate eventually. My wife offered me a choice of taking it before or after work. The last injection wiped me out and I had an appointment yesterday morning, so I chose after work. Never again. I don’t know what I was thinking.

I don’t think I was thinking at all, actually. This was only the third shot, and the first my wife has given me at home. At the end of the day, we both had had enough of people (our own sorry selves included). It was a sad state of affairs, me crabby and anxious, my wife fed-up and frustrated.

We were so tired we both forgot a cotton ball to hold against the injection site, and my wife’s hand had jiggled a little bit so when she pulled out the needle she gasped. I peered around to see what the hell was going on (gasping is not a good sign) and saw a steady trickle of blood running down into the small of my back. Then I gasped (still not a good sign). All I thought of in that moment was cardiac arrest. If she injects these antibiotics intravenously I could die of a heart attack within minutes. And there’s nothing like the threat of cardiac arrest to bring on its symptoms.

While she ran to the bathroom to grab a tissue (she must have been panicking, too, since there was a box sitting on my night table—we just hadn’t pulled one out and kept it handy) I used my pajamas to stop the bleeding and gave myself a calming mental slap on the face. My wife had checked to make sure she wasn’t in a vein before proceeding. She’d really have to try hard to find a vein, from what I’ve been told by myriad grumbling phlebotomists. I hadn’t just imagined the jiggling needle. The poor thing was so tired and nervous that her hand was shaking and countless capillaries fell victim to its sway.

The bleeding stopped almost immediately, and obviously I didn’t have a heart attack. And next time will be better. It will be in the morning, at the start of our day, before I’ve had a chance to build up petty grudges and grievances against the world and my small place in it.

Trading Places

Thursday, my wife drove me out to the new specialist and watched while the doctor poked and prodded my hips and backside, looking for sufficient flesh to safely inject the antibiotics without hitting a nerve or a bone. Next visit, on Monday, my wife gets to do it herself with the doc supervising and I don’t think I’ve ever seen her so nervous in the nine years we’ve been together.

When we first got together, she would occasionally have to jab me with my migraine meds. The shot was one of those nifty automatic pens that she simply held against my thigh and pressed a button. Sure, it had the same kickback as the small pistol my grandfather taught me to shoot rattlesnakes with, and made about as much noise as that tiny weapon. But everything was hidden and fast. Speed of light fast compared to the abx.

Without forethought on Thursday, I opted to get the first abx shot in my right hip, which resulted in my back being turned to the action unfolding behind me. Before I rolled over, though, I caught sight of my wife’s face and the poor thing had broken out in a nervous sweat. She put on her brave face for me and squeezed my hand, but I could see the terror in her eyes.

And that calmed me for some reason. I’d been so uptight I’ve lost sleep over this new course of treatment. And I’m not too embarrassed to admit I nearly lost my shit when I saw the needle, because I immediately realized there was no part on my body where enough muscle remained to accommodate it. When the time came, though, hearing the tremor in my wife’s voice gave me something other than the pain in my hip to think about, reminded me why I’m fighting so hard. So I just rolled over, did my breathing, and waited for it to be over.

When my wife shoots me up for the first time, I’ll get to look at her. This makes her more nervous; when I pointed it out last night she went green and nearly threw up. She’ll see, though, that she isn’t hurting me. I didn’t feel the needle at all, and the compassionate doc was patient with the plunger so the experience was more uncomfortable than anything else.

Until I tried to stand up. I felt like I’d been hit with a baseball bat. The meds, of course, had collected into a gait-impairing monkey-bump the size of a tangerine. For the first time in six months I had an ass. Unfortunately, it was only on the one side, but at least it was firm and riding high.

Contact Lyme

My wife rose early this morning and joined me on the porch to watch the sun rise. Not that there was much of a display today; the clouds were too thick to show anything but a gradual lightening from inky black to hazy gunmetal with the occasional wisp of white.

While I sat contemplating this, she realized she’d forgotten to call her brother last night to wish him a happy birthday. She and I had talked about it, too, as we were heading into the house so I could finally go to bed. I suspect her sister arrived shortly after I went to bed and distracted her.

But this is a common occurrence, her forgetting things. And while I have surely exposed her to the little spirochetes happily munching away at my brain, she has not been bitten so far as we know. Also, she has the opposite constitution as me, and so would most likely be able to fend them off quite readily as I have not.

All the same, we’ve decided she suffers from Contact Lyme, as do all of the people currently living or having lived in our home over the past few years. My symptoms seem to bleed over into their behaviors. It’s terrible.

When I first noticed this, I stopped complaining or being specific about what hurts (not that I was much of a whiner to begin with). But this had no appreciable effect on what was happening. Or at least what I was seeing. There are, of course, other explanations. My wife has caretaker burnout. My daughter is an adolescent, which says it all I suppose.

Nonetheless, I wonder if others are seeing anything similar in their own homes. My wife and close friends notice it, too, so at least I have the comfort of knowing it’s not all in what’s left of my poor little head.

Flipping the Switch

Thank God for another beautiful sunrise this morning—flat low-lying clouds glowing pink then orange from underneath. Gorgeous enough to drag me up out of my funk. I woke too late this morning, or I should say I went back to sleep when I woke at four and didn’t wake again until almost six, when my body and head hurt too much for me to ignore anymore. I must have been crying for a while, because my pillow and hair were wet.

The crying continued as I made my way downstairs, running into every doorjamb on the way, and it increased when I remembered I’d used the last coffee filter yesterday and had forgotten to get more. Not that I was sobbing, just leaking really.

Our paper towels don’t lend themselves to back-up filters, leaving too much lint in the brew. So I use a French press as a back-up means of life-support. But my wonderful wife, who does all of the shopping for our family, has taken to grinding the five pound bag of beans at the store in their industrial beast to save me the time standing at the counter doing so one pot at a time. And, being a wonderful wife, she knows that if I can see through the brewed coffee in my cup, it’s too weak; I want to be able to see a reflection in my coffee, I want to be slapped around by a rich, full flavor.

Again, I digress. I love coffee. My point was, the drip grind is much much finer than what I would use for the press, and since my wife is now grinding all of my coffee for me, I can’t adjust it at home. And so, the press is not such a convenient back-up. This morning, I began to get angry as I visualized all of the grounds seeping up through the strainer, making mud soup.

I didn’t even try to avoid flying into a rage. I’ve found that the best solution is to not get angry to begin with, since once it starts, the cascade doesn’t stop. I feel like the Incredible Hulk, once that switch is flipped there’s no turning back until the rage has run its course. So most times, I focus on my breathing, try to put the situation into perspective.

Not this morning. I thought for a few seconds I’d hit the jackpot and skirted the rage when I remembered out of nowhere some beans a friend had given me for a gift. I dug them out of the freezer, what precious few remained. It’s really good coffee. I had to hide it from myself to save for days when I need something special to savor or when I feel I’ve earned or want a special treat. Like today hahahahaha.

So what if the delicious little dark brown nuggets needed to be ground? I have a grinder. I can do that, and leave them coarse for a change. I had coffee and my morning was back on track. Until I spilled half the beans on the floor by missing the grinder and not pulling the bag back up in time. Then I over-ground them because I’d been trying to be efficient and roll the bag back up at the same time. With great trepidation I lifted the lid on the grinder, and my hand was instantly coated in a fine brown powder. Perfect for the drip. Terrible for the press.

That’s when I went over the edge and I’m sure I turned green. I slammed the grinder back on the counter and started to cry in earnest. My hips, knees, and shoulders complained that I was a crazy woman and exhorted me to sit down. I ignored them, making my way toward the electric kettle. Which was almost empty, damn it all to hell and back again. Could nothing go right? The sink is at least eight steps from the socket for the kettle. I tugged on the cord but it wouldn’t come out of the kettle. I tugged again; still nothing.

If I’m feeling this mean and green why do I not have the strength to get the cord out of a simple kitchen appliance? In retrospect, I probably should have tried my left arm, the one not bruised and sore from running into things. But at the time, I was going to get that cord off that kettle whether I broke the thing or not.

Oh what a battle. I yanked; it went into a full retreat. I held the cord firm and pulled the kettle away from me; the cord slipped through my fingers. I beat it once flat against the counter to show it who was boss—I am the one with the thumbs in this situation after all—and pulled again. It remained unimpressed with my flaccid display of brute force. I cursed at it fluently, vehemently, in multiple languages. It bucked and resisted my every effort, overturning the other items on the counter.

The ruckus at this point brought my wife out of bed to call down the stairs, inquiring if I was all right. She knows I’m not, but she also has learned to leave me alone because I will take down anyone and anything that tries to get between me and whatever I’m battling.

Or I’ll try and end up hurting myself. I called up that I was fine, beat the kettle randomly on the counter again, and gave one last pull. It gave at last, and so unexpected was the victory that I stumbled backward and spilled what little water had been in the kettle all over myself. I don’t see how I could have done that; the lid latches and clicks into place. I think it was sabotage. That damn kettle. We haven’t seen the last of each other, the two of us.

Yes, I know I could have brought the water to the appliance. I could have asked my wife to make the coffee for me. But the switch had been flipped and that kettle was going down. I was getting my coffee no matter the casualties.

It makes no sense, and these moods are not reflective of my overall personality. I’m feisty and stubborn, yes. No doubt. But to dissolve into a toddler-like tantrum in the middle of my kitchen at six in the morning because I forgot to get filters, I spilled the beans and then overground them is not really me and I hate it.

At least the rage dissipates quickly, if I let it out. Ten minutes after the whole battle royale, I stepped onto my frosty porch and sat down to enjoy an amazing perspective-shifting sunrise while enjoying some of the best mud soup I’ve ever had.

Happy New Year?

Today, ostensibly, begins a new year. But apart from having to remember to change the date on any odd check or form I may fill out, I can’t say I feel any different. No big resolutions this year for me; those came a couple of months ago when I decided to take a short break from working full time and move in different, more aggressive, direction with my treatment.

As long as the spirochetes run rampant through my body, I don’t know that I’ll feel any different no matter what year it is. These past twelve months (my first in treatment) have flown past, a blur of symptoms, pain, frustration, guilt. The next twelve, I expect, will do the same—though at the time the hours do pass with a torturous languor that marks a life equally void of momentum.

My family would disagree about the momentum, especially as they all look forward to and embrace the impending antibiotic treatment that still makes my gut knot when I think of it. But from my perspective, I’m exactly where I was a year ago—starting treatment, full of anxiety, but unable to sustain my current condition as is. Except this January 1, I’m nowhere near as healthy as I was 365 days ago. At least I don’t feel like it.

Still, I’m fortunate to have family and friends to support me. At least I think I do still have friends somewhere out there. Not having the energy to reach out much let alone go out to meet friends, I’ll have to trust that those connections I valued before I became more homebound will remain when I am better. I doubt it, else why aren’t they here?

Aside from the neighbors with whom we are close, and who have very little choice about withdrawing from the situation unless they want to try to unload their property in a hostile marketplace, my wife and I have only one set of friends who have stayed in contact with us and understood that we have the heart to be with others but we don’t have the time or perhaps the initiative to be the ones to make the calls and set up plans.

This isn’t to suggest I’ve ever been one to surround myself with gaggles of friends. Most people either fear me or dislike me for instinctive, unexamined reasons. And I don’t mind; I lack the social skills for high maintenance friendships, which I loosely define as anyone requiring contact more than once a month in order to feel secure in our relationship. Still, I am sorry that a few people have receded, even stopped returning emails and such, once I stopped working and getting out and about.

So whoever you are, be you stranger or acquaintance, whether you’re struggling with Lyme or just browsing the web and finding the tedium interesting, I wish you good health and good friends throughout the coming year. For myself, I am going to fetch some more coffee and see if my dear friends (who wisely stayed over last night) are ready for some too. Maybe after a couple of cups they can answer for me, is it really a new year if the next twelve months are going to be filled with same crap as the last twelve?