Don't Move!
Andy and I have been in our new house for a full month already, but I haven’t been writing much because I’ve spent most of that time struggling to find my equilibrium (and dealing with a cerebrospinal fluid leak, but more about that later). On the one hand, I suppose being completely kerfloozled by a major move when one has a brain injury is to be expected - moving is awful even at the best of times! On the other hand, it is annoying as sh*t.
As I’ve mentioned before, packing used to be my superpower! I was excellent at it, and I genuinely enjoyed the challenge of doing it well. When my son David and I moved from Michigan to Boulder, Colorado for my 2007-8 sabbatical, I fit everything we needed for the entire year into a VW Jetta wagon + Thule cargo carrier. And, for both that and bigger moves, I remembered what was packed in each and every box. Andy and I moved three times between January 2022 and October 2023, and every time he’d ask something like: “Do you know where the napkins are?” I could answer: “Yeah, they’re in the second box from the left on the kitchen counter, wrapped around the wineglasses.” (My favorite moving tip, learned years ago from a Very Wise friend: if you’re a coffee-drinker, pack all your coffee supplies + a few mugs LAST, in one box, label the box COFFEE, and watch it like a hawk. You will be your own favorite person the morning after the move.)
This time, however, I got overwhelmed just looking at the moving boxes; I couldn’t figure out what things I wanted to put in which box, or how to pack them. Was I going to want books on mythology on the main floor, for example, or in the guest room? How could I decide which books to put in what box?? If you’re thinking, “Ummm, does it matter? Just pack bookcase by bookcase and worry about it when you’re in the new house?” your executive functioning is intact - congratulations! I, on the other hand, got completely stymied by whether all our bowls should go in the same box, or if the dark blue bowls with cherry blossoms on them should be packed with the matching plates, while the white bowls with the blue flower pattern on them were packed with their matching plates. But then what would happen to the pasta bowls?? My brain consistently ground to a halt trying to work its way through these sorts of problems - which, while almost infinite when facing a move, ARE NOT REAL PROBLEMS, because it doesn’t matter which boxes the bowls go in. (Sidenote: we also only have about fifteen bowls in total.)
The sensation of knowing that I was getting hung up on those sorts of non-issues but not being able to do anything about it was bizarre: I simply couldn’t make a plan for packing a box on my own. If someone were to have said to me, “Hey, put all the plates in this box, and all the glasses in that box,” I think I could have done it - at least until I ran out of physical oomph, which was taking about 20 minutes at that point. Andy wasn’t in a position to be that someone, however, both because it is fundamentally against his nature to be either bossy or directive and because he was busily trying to pack other things. (In retrospect, I probably should have called a friend and made them boss me around over FaceTime or something. Unfortunately, it is not until right now, as I was writing out what my problem was, that this particular solution occurred to me. Ah, executive skills, how I miss you!)
It was really a moment of truth for both me and Andy about my new/current limitations, where by ‘moment’ I mean ‘horrible few weeks that we hope never to repeat’. And it caught us both off-guard. Andy is so used to my being a SuperPacker that when I initially suggested that this time we pay movers to pack our things as well as move them, he asked what the price difference was and, upon hearing the number, wrinkled his nose and said, “I mean, we’ve got two full weeks between closing on the house and when we need to be out of our apartment.” And I am still a horrible enough judge of my own current limitations that I figured we probably could handle our own packing one more time.
Technically, it did turn out to be true that we could handle it: all our stuff was in boxes before the movers had finished packing the truck (minus a bunch of plants and everything in the bathrooms, which we picked up the next day when we came back to clean). But it was BRUTAL.
It didn’t help that we made the classic home-buyers’ blunder: trying to do work on the new place whilst packing up the old place. The floors of the new house are the original-from-1884 ‘pumpkin pine’ boards, and they clearly hadn’t been refinished in a long time. (The kitchen in particular had several patches where the finish had worn down to bare wood.) Having refinished the floors of any number of rooms in my 1924-built house back in Grand Rapids, Michigan, I knew how lovely and satisfying the end result could be - and also that this was a project you want to do before you move in, if at all possible. Andy’s brother Dan was coming out for four days to help us with stuff, and so I talked Andy into thinking it was reasonable for the three of us to rent a floor-sander and refinish the floors on the main floor while Dan was there.
I swear it wasn’t as ridiculous a plan as it might sound: Dan and I both knew the floor-refinishing drill, and pine floors are soft - the biggest issue with them is usually being gentle enough not to leave gouges with the sander. We even had an action plan going in, so I wouldn’t wear myself out! Finishing floors is usually a two-day project: you get the floors sanded in one day, and then the next day you do the coats of finish. And we had four days with Dan to help.
Welllll…it turns out that ‘pumpkin pine’ bears no resemblance to the soft pine us Midwesterner are familiar with. No. Resemblance. At. All. It is old-growth Douglas fir that’s full of resin - resin that essentially petrifies as it lies there being your floor, so that trying to sand it down is much like trying to sand down diamond. Dan and I spent fifteen minutes in a corner of the living room with 60-grit sandpaper and a professional floor-sander and basically didn’t make a dent. This called for a change of plans: instead of the whole first floor, perhaps just the kitchen could be refinished? That was the floor that needed it the most, after all. And it was from a slightly later era, so perhaps it would be easier to work with?
Long story short: no, it wasn’t. It was a BEAST. And the starter of the floor sander we’d rented shorted out on us early evening on Saturday (giving me a nasty shock in the process), with the company being closed on Sunday. Then the replacement sander they gave us on Monday had an issue with one of its rotors. By the time we actually had a fully working sander on mid-Monday afternoon, Dan was leaving in 36 hours. Still, everyone was in relatively good spirits, and so work commenced.
My main job was supposed to be to keep the dog away from the blooming buzzing confusion and let the menfolk labor. But the floor was so hard that progress was infinitesimal. Eight hours later the floor was only showing minimal improvement, despite the fact that one person had been working the floor sander and one person the hand sander pretty much the entire time; spirits were low.
Despite working like a hero, Dan ended up having to leave before the floor was even fully sanded. And here’s where I wore myself down to the bone: I sent Tor with Andy to bring Dan to the Newark airport, and I spent the entire three hours sanding. And then another two after Andy got back. And then Andy spent another two. (I have special grudges against certain floorboards and certain knots on that floor now, which I think is a phenomenon only people who’ve refinished their own floors experience.)
Finally, FINALLY the floor was bare! The next day, Andy and I put down the finish, which was the one part of the move that went quickly and well. We now have a fully finished kitchen floor, which I hereby promise never to refinish again.
We were now, of course, well behind schedule - as is virtually inevitable with such projects, and I had used up all my ‘spoons’ on that blasted floor. The night before the movers arrived, I was so cognitively drained and in so much pain that all I could do was lie on our bed, surrounded by a mountain of clothes I hadn’t been able to pack yet, and snuggle Tor. (Snuggling the puppy at least had the bonus of making me feel slightly helpful, because Tor was pretty rattled by us putting everything into boxes and wanted to be right on top of one of us at all times.) Meanwhile, Andy was left to frantically pack everything left, which was so much more than either of us had expected.
Things didn’t get any easier on the other end. I have always been the annoying sort of person who has all their belongings unpacked and in good order within the first 24-48 hours after a move. (My friend Natalie once called me a ‘hummingbird on crack’ while watching me do this.) Now here we were in a new space, and I was having trouble just figuring out where to put my toothbrush! In addition, packing is not Andy’s superpower, doing it under extreme stress only made him more rattled, and my ability to unpack things turned out to be no more intact than my ability to pack them in the first place. I’d open a box, find that it contained books from three completely different categories, put four of them on a shelf, stare helplessly at the ones in my hand, and then yell at Andy for not packing more methodically. I couldn’t help unpack the kitchen at all, because I would get so frustrated about finding nothing in a box but three glasses, a colander, and seven jars of spices packed carefully in eight layers of packing. (Who painstakingly packs a box with one corkscrew, an empty craft beer can whose label one apparently wants to peel off and save, and two plates? A MONSTER, that’s who.)
Getting mad at Andy about putting things in boxes based on what fit best (as opposed to my usual system of mental categories, which reflects the objective joints in nature) was clearly unfair to him. Obviously I was mostly frustrated with having the physical stamina, organizational abilities, and emotional control of a two-year-old, and only a little frustrated with opening boxes packed by a chaos monster. Knowing that on an intellectual level, however, did almost nothing to help me manage what I’ve started calling my ‘toddler emotions’, which are Very Big and almost entirely unmanageable.
My cognitive therapist keeps telling me it’s actually a sign of improvement that I’m being overwhelmed by emotions now, since between roughly October and May, I wasn’t really able to experience feelings. Instead, I was in this bizarre place where I would be aware of mental states that I’m used to associating with feeling certain emotions, but without the actual sensation of the emotion: it was like going from a rich mountain valley to a completely flat grey plain. This had kicked in fairly early in the shingles/meningitis/encephalitis journey, and was definitely helpful in dealing with the trauma of being in the hospital and having two separate rounds of PIIC line + antiviral infusions every eight hours, but was much less helpful for day-to-day life. (It also seemed to be a function of brain swelling/increased intracranial pressure, because it would get a little better and then flatten out again when and after I had a flare-up.) Even if it’s better from a big-picture perspective to be dealing with a sudden surge of emotion that catches both me and Andy off-guard with its intensity, it is not, shall we say, “awesome” for marital harmony and easy living.
My biggest accomplishment for the first entire week we were in the new house was to set up one corner of one room so I could go stare at it when my eyes and brain needed Order. It looked like this:
The entire rest of the house, meanwhile, looked like this:
AND THEN, eight days after the move, following the principle of ‘no situation so bad it can’t be made worse’, I sprang a cerebrospinal fluid (CSF) leak, and I had to spend six days on lie-flat bed rest to see if it would heal on its own, or if I would have to go in for a medical procedure called a ‘Blood Patch’ (which I think would make a great name for a horror movie about a haunted pumpkin patch).
Properly speaking, what happened was that I had a lumbar puncture to measure CSF pressure and test for infection and other fun things, and then my spine decided that quietly closing up the hole was for suckers, and that instead it would leak copiously and fill the tissues of my entire low back with fluid to the point where I had no visible tailbone and the divot running down my spine just…stopped…about two inches north of where it usually does. As a result, I developed the sort of headache that made it difficult to hear what people were saying to me, because the pain was so loud. I just thought it was my pressure elevating again, though, and so I went in as usual for an appointment with my neuro-ophthamologist four days after the LP. She basically took one look at my clammy, nauseous, only-partially-responsive self, looked at my chart, tipped the exam chair all the way back so I was pointed at the ceiling, and texted my neurologist to tell her I had a spinal fluid leak. (Can I just say again how much I love that my neuro ‘team’ actually communicates and works well together?) She then made me lie in the chair until Andy texted that he was waiting out front and sent a nurse to escort me down to the car. (Neuro people are so precious about things like 'maintaining a positive CSF pressure’!)
So now there I was: on strict bed rest, surrounded by unpacked boxes, in a town where we didn’t know a soul. My neurologist called to talk to me and gave me depressing permissions like, “You can move your arms and legs around a bit to avoid blood clots, and you can get up to use the bathroom.” The anesthesiologist I had to consult with about the potential blood patch added that the best thing I could do was to consume as much caffeine as possible. I told her I was managing three cups of coffee a day, but that after that I started gagging. She rolled her eyes and told me to start taking NoDoze tablets in the morning and afternoon.
Here I am, obediently lying in bed, hopped up on caffeine:
Ok, so this has been a real downer of a post so far: Mid-July to mid-August was not my favorite. That said, when I posted on FB that I was being put on complete bedrest, and Andy was going to have to take care of me 24/7 without any support network in our new town, things started getting a lot better. One of Andy’s friends from grad school coordinated with one of our mutual friends to set up a MealTrain for us, and people from all over donated money or sent us food or flowers, and it was the most incredibly encouraging thing EVER. In fact, the donations far exceeded anything we could have possibly used during one week of bed rest, so now we’re using the rest of the funds to support our local businesses as we explore the area.
AND! I don’t want to jinx anything, but in the month since my CSF pressure bottomed-out, I haven’t had any flare-ups or issues with increased intracranial pressure. It’s possible it’s going to build up again slowly, and/or that the flare-up schedule (which has been every three weeks or so for the last year) just got disrupted and will resume again soon…but it’s also possible that the drastic drop in CSF pressure has allowed my ‘high-grade bilateral dural venous sinus stenosis’ to resolve, and that this will allow my system to ‘reset’. Every CT and MRI I’ve had since July 27, 2023 has shown that the main veins responsible for draining fluid and maintaining CSF pressure in my brain have been 80-99% closed; I’m hoping and praying that what’s happened is that they were able to open up again, and that they’re now functioning the way they used to.
Ok! Long post.
Tl;dr: moving is awful, people are wonderful, and the damage to my brain remains, BUT if the meningitis stops recurring and my CSF can circulate normally again, my brain might actually have a chance to heal! Until next time, please be much nicer to your noggins that I’ve been in the last month. <3
I know this isn't the most important thing, but what a beautiful floor your kitchen has!
What a hard row to hoe! My hat goes off to you for your positive attitude!