Concussed: One Year Later

The point that laid me low.

It's hard to believe it, but a full year has passed since I dropped a bag of beads on the stairs, painstakingly picked up all five hundred of them, and then jumped up from my kneeling position, smashing the crown of my head against the pointed corner of the handrail directly above me. Twelve months later, I have yet to fully heal from the resulting concussion.

An explanation as to why a minor concussion could have such a profound effect on my brain.

Abbey was a big help.

I've come a long way from those first awful weeks where I was confined to my parents' darkened bedroom, unable to tolerate any light, and so nauseated I could barely stand drinking tiny sips of water through a straw. The concussion caused migraines that felt like a roaring chainsaw was being pressed into my brain. My heart raced and I was badly overheated all the time. The slightest noise was agonizing. I was terribly fatigued, but had difficulty sleeping because of my heart rate and the pain. My nausea limited me to a diet that consisted mostly of fruit juice popsicles, a few peanuts for protein, dried apricots for potassium (otherwise I got nasty muscle spasms), and the occasional bland cracker, and my weight started to drop. My one comfort was the company of my loyal dog.

Five Weeks Out: Before and After

Stormy winter weather
caused fatigue and pain.

Eventually, I got well enough to sit up in bed and read, then to spend fifteen minutes at a time on the computer if I wore my darkest glasses. I gradually progressed to watching ocean documentaries because I was able to tolerate the blue underwater scenes. I had a hypomanic burst of energy in August that I used to open my second Etsy store, but most of the time, I found it difficult to think clearly and difficult to concentrate. I was exhausted all the time and had to spend most of my days in bed. My eyes were more light sensitive than they had been before and I suffered as the angle of the sunlight changed with the coming of winter. My migraines were more painful than they were before. I found I was more susceptible to changes in the weather, too.

Eight Weeks Out: Where I'm At

The effort it took for me to take
this photo proved costly.

As the weeks went by, I improved enough to get back to my photography work and watching TV shows on the internet and spending time with my family. I was able to be present, at least for the meal, at Thanksgiving and Christmas. Although they wore me out, I was able to take some dog-sitting gigs. But after three months, my recovery stalled at about 80%.

Three Months

Hanging out with horses
has been very helpful!

I celebrated my birthday a couple of weeks ago, which seemed very strange, since I could have sworn that I'd just HAD my birthday a few months before. In many ways, that was true. July through February had more-or-less vanished into a gulf of concussion recovery; life did not truly resume until eight months later, in March, when I started getting involved with horses. Since then, I've had more strength, energy, and stamina, I've been better able to drive again, and I'm much more likely to leave the house for fun or to ride along on errands and not just for medical appointments.

The beads that caused it all.

But if you compare where I was last year at this time to where I am this year, it's clear that my recovery is still not complete. Last year, I was wrapping up the prep-work for a children's ABC book. To get the necessary props to photograph, I went on many errands and was capable of making three different stops, including at visually chaotic places like thrift and party supply stores, before getting a migraine. I had built up enough strength to occasionally walk the dog. I was taking tons of photographs. My life was, by necessity, very small in scope, but I had sufficient energy to enjoy it and get quite a bit of work done, especially when the weather was nice.

My boxes of ABC props
have been put away.

This year? The ABC book has been shelved (quite literally, in the hall closet) indefinitely. I just can't see having the energy to take on a project of that size any time soon. While I have started driving to visit the horses, I'm most definitely not running multiple errands in an outing. I've taken myself to the dentist and the bank in recent months, but I avoid going in stores, which are just too loud and busy. I ride along on fewer errands with my family than I used to; too often the visual chaos of the outside world speeding by is too much for me. I've found there are movies that I used to be able to watch that I can no longer view because the quick and jagged editing style gives me a migraine after just a minute or two. Sometimes I'll go for a walk around the block with the dog, but any further than that and I risk getting a headache from too much exertion. I'm still more noise sensitive, especially to music, than I was before the concussion. It's really just in the last couple of months that I've been able to resume reading at the my pre-concussion level and sometimes my brain and my eyes are still too tired to handle small print and complex sentence structures. I spent so many days this winter incapacitated by the weather that I actually brought up the possibility of moving to California. It's depressing to spend so much time feeling wiped out and unable to think clearly, but I don't think I'm well enough to live on my own, whereas before the head injury, if I set things up properly, it might have been possible. I also have this ongoing sense of nearly always being stretched too thin, trying to do too much. I feel like I have no reserve whatsoever. I'm very driven by my creativity and my general inclination toward hard work, so it's not easy to scale back to the minimal level of activity my brain demands. I still take lots of photographs, but I've slowed the expansion of my photography as a business. Also, before the concussion, I used to make an Etsy treasury every single week. I seldom have the ability to look at the computer screen for the amount of time it takes to make one (and if I am having a day where I'm able to look at the screen for extended periods, I'm probably busy doing something more immediately relevant to making Etsy listings, like editing photos in Photoshop), so I've created only a dozen or so in the last year. I've also noticed that I watch far fewer movies than I used to; they sometimes seem just too long and demanding. I've been saying for several months now that when the weather finally gets nice, I'll know for sure how far my concussion recovery has come because a) I always do better when the sun is out and b) it had been very sunny prior to my head injury, but I know that even with the sun shining, I'm not up for making extensive alphabet lists and driving from store to store in search of props like I was before.

Photographing things like shrew-
moles keeps my spirits up!

I'd say that I hover around 90-95% of a full recovery one year later. It's a real shame that this happened to me, since the last thing my inflamed migraine brain needed was more inflammation and nerve damage, but what can you do? As I discussed in this post, none of the decisions I made that led to me to get this concussion were decisions I would want to take back. It was simply really bad luck, an accident. Life is full of accidents. I can't take this concussion and its lingering impact away. Sure, it would be lovely to be doing better than I am, but I'll be damned if I waste any of my precious energy on useless regrets. So I do what I always do: take photos, pet the dog, read when I can, watch nature documentaries when I can't, write blogs and listings when I'm able, crochet baby blankets when I'm not, spend time with my family, spend time with the horses. In time, my brain may heal completely. Or maybe it won't. Either way, I'll just keep doing as much as I can with the amount of energy and wellness I've been granted for the day, which, when you get down to it, is as much as any of us can do and a reasonable recipe for satisfaction.

California Dreamin'

I dread the coming winter.

I used to love autumn. It was my favorite season. I missed it tremendously during the four years I spent going to college in Florida. I missed the way the color of the light changed from warm and golden to cool and white, the delicious tang of cooler days and frosty nights, the brilliant colors of turning leaves, the crunch of those leaves underfoot, and the spicy scent that I associate with fallen brown big-leaf maple leaves in particular. When I worked as a floral designer, it was definitely my favorite season because of the grasses and the pods, the bold dahlias and sunflowers, the antiqued hydrangeas, the joy of working in a palette of rust, chocolate, copper, cinnamon, orange, and burgundy. Fall always made me feel more alive. The sunny days were glorious and the rainy days seemed seasonally appropriate.

Today is the kind of sunny autumn day that used to set my heart singing. But instead I am filled with terrible apprehension. Fall and winter are not kind to this particular migraineur.

Take this photo, for example:

My parents, when choosing the house where I live, kept the benefits of passive solar in mind, and so all the main living areas of the house--the kitchen and family room, the windows of all the bedrooms except my own--face south. Because of Seattle's latitude, the angle of the sun changes dramatically between summer and winter. During the summer, sunshine penetrates all these south-facing windows by only a foot or so, which helps keep the house cool. In winter, the sun shines all the way in to the far walls, filling the house with light. As you can see in the picture, the sun of late September is penetrating deep into the kitchen. The problem for me, though, is that this change in the sun's angle is excruciating to my light-sensitive eyes. Sunlight becomes unavoidable. It spills across the kitchen table and the family room couches. It reflects blindingly from the chrome of the kitchen faucet. And if I look out the windows, it shines painfully into my eyes.

This picture also represents a terrible problem. Those dappled shadows spilling across the carpet (and Abbey) are my idea of hell. When the wind stirs the branches, causing them to move, the effect on my brain is nearly unbearable.

Shadows outside the house become problematic, too. The changing angle of the light casts longer shadows and the cooler light temperature means the contrast between the very white light and the very black shadows is greater than they are during the summer. The contrast between black and white is very difficult for the migraine brain to handle, which is why I seldom read books or magazines much anymore and I have to limit my writing and reading on the computer. The contrast between the thin black lines of print on a white page is nothing, however, compared to the shadows cast by trees on a sunny day and the worst possible thing is to be riding in a car through those shadows. The strobe effect of passing rapidly in and out of darkness back into bright light causes an instant, severe migraine.

Winter also means shorter days and, therefore, longer nights. When the sun sets at 4:30 in the afternoon, it means any outing undertaken in the evening is done in darkness and being out in the dark means encountering the contrast of bright headlights, streetlights, signage, etc., against the darkness. One of the most awful sensations as a migraineur is to be riding in the car and have the shadows cast by streetlights pass through the car. Most people, I'm sure, never notice the way the shadows seem to run through the car, one after another, but I find it agonizing. Last winter, I stopped riding in the car at night altogether. During the summer, when it didn't get dark until 9:30 or later, I seldom ran into the issue.

I spent last winter virtually a prisoner in my own house, unable to tolerate the roving shadows in the outside world, always having to sit with my back to windows, creeping and wincing through the house. Things improved when I obtained my light sensitivity glasses last March, but this fall I'm more light sensitive because of the concussion, so the benefit of the glasses is only about equal to where I was last year without them.

A wind-whipped Mr. Gorgeous in photo taken last
February. I was helping out his owners by walking
him regularly, but I was exhausted all the time
not from the exercise, but from the endless wind.

I have another worry, too. I used to find some respite in cloudy days, of which Seattle has an abundance, but my increased sensitivity to changes in barometric pressure, particularly the drops associated with bad weather, has me worried. Last winter, La Niña brought months of wind and I spent most of the early spring in exhausted misery. When the wind blows, it saps all my energy, lowers my mood, increases my migraines. There is no escape from it. I can't tell you how much I dread this coming winter, with its fluctuating bad weather and the possibility of another La Niña and months of wind.

Before the migraines started, I was very seriously considering relocating to the Southwest, since I love the landscape there and I had noticed that from a mood standpoint, I feel ridiculously better when the sun is out. With this increase in sensitivity to changes in weather in general and wind in particular, the Southwest (and most anywhere else in the U.S.) with its windy springs and occasional thunderstorms is out. I am now certain that I will be moving to Southern California at some point. My parents are from Los Angeles and we visited every summer and I have extended family there. I liked to visit, but it was never a place where I desired to live, but Southern California, be it the Los Angeles area or San Diego, has some of the sunniest, most stable weather in the country, and being at a much more southern latitude, the changes in the angle of light during the winter is not so severe. It may be some time (as in several years), though, before such a move is possible. I must confess that the thought of spending not just this winter but many more here fills me with despair.

Before and After

When I saw my neurologist a couple of weeks ago, I was rather surprised that she had essentially zero interest in hearing what had gone on in the five months since I'd seen her last (though it could be summed up by the words, "no change"); all she was concerned about was the two weeks that had transpired since I'd hit my head. Nearly five weeks post-concussion, though, I better understand her focus. She's right: everything has changed.

The last two years of my life now comprises three eras: my life before the chronic migraines started (we shall refer to is was the B.M. era), the twenty-one months of daily migraines prior to the head injury (D.M.), and then these five weeks after the concussion (P.C.).

I'd found that things that I could accomplish in hours B.M. took days in the D.M. era, things that took days B.M. took weeks D.M., and things that took weeks B.M. took months D.M. If I thought everything took longer with migraines, it doesn't even compare to how much exponentially longer things take now. I've spent a week, for example, trying to write this post, but generally have to lie down after writing a few sentences and am too exhausted to write at all on most days. My previous entry, although mostly photos, nevertheless took several days to put together.

It's the fatigue that has surprised me the most. I've experienced the worst light sensitivity and the worst nausea in my nine years as a migraineur during these last few weeks, but those things, fortunately, have gradually abated. I've found, though, that getting worn out makes me extraordinarily vulnerable to seeing these symptoms reoccur. The stress and stimuli involved in seeing my neurologist, for example, left me too nauseated to even drink water and so light sensitive that the little bit of light filtering through my eyelids as I lay in a room with the lights off, doors closed, and the blinds shut was intolerable. It was more than a week before I even began to recover and I was nearly sent back to square one when I started having trouble sleeping because I was overheating in the night.

But beyond coping with stressors, the day-to-day exhaustion is considerable. During the D.M. phase, I might spend 18 hours in bed on a really bad day, but 12-14 was the more common range.  P.C., on a GOOD day I'm only in bed for 18 hours. On a bad day (and there have been a lot of them), I may spend 21 to 22 hours in bed. I generally haven't been sleeping more than twelve hours, but I haven't wanted to be up during the other twelve hours when I'm awake. Trying to produce anything (like writing) has been nearly impossible, and I've gone as far as temporarily shuttering my Etsy store. I could have left it up and just ignored it, but the idea that someone might BUY something was exhausting. Watching a bit of TV on the internet has been a stretch most days (I've confined myself by and large to nature documentaries) and I haven't had the slightest interest in attempting something as long as a movie. I'm not always up for reading, but if I finally have reached my limit for lying in the dark while my mind wanders (I've done a considerable amount of "writing" in my head over these last few weeks), it's generally preferable to the light, movement, and sound to be found on the screen or, for that matter, in the real world. We've finally had a bit of nicer weather in this part of the country, but I'm better off when the sun isn't shining. There are just too many leaves out there, too much light and shadow. I've only left the house once for a reason other than a medical appointment and it was a mistake. I thought riding along on a twilight errand might be a welcome change of pace, but it was far too much light and movement.

Another P.C. change is that the one acute migraine drug that I'd found helpful D.M. no longer works. Time will tell, but my neurologist is not optimistic. The blow to the head may have caused a long term change to how my migraines work. Right now, my greatest relief comes from an anti-inflammatory from the ibuprofen family (which, fortunately, has not interacted negatively with my lithium as often as I feared it would, though it just so happens that today is one of the days when it has caused my lithium level to spike, which means I can't take more until my lithium level comes back down) and Vitamin B12 injections. My naturopath taught my parents how to give me them at home, so I've been able to have one twice a week.  The most effective treatment, though, is lying in bed in the dark doing nothing. Having worn myself out completely in my effort to get all this down into writing, that is what is on my agenda for the rest of the day.

It's a strange life, and made stranger still because it resembles, in many ways, the months of migraines that preceded it. But this is undoubtably a new era, and a harder one. I hope that it won't be too many more months before it starts to get easier.