Tummy Trouble

I haven't been able to blog nearly as much as I would like these last few months because I've still been suffering the aftereffects of the virus I caught all the way back in October that knocked my stomach offline. I don't recall if I ever posted the final diagnosis, which was that the otherwise ordinary virus (which wasn't even very stomach-oriented--I mainly had fever and chills and fatigue with some lack of appetite) made my stomach cease to move and empty properly, so it wasn't doing a good job of grinding up the food I put in it and then it had trouble moving the food on into the intestines. The end result was lots of pain and nausea and a particular distaste for vegetables, which require a great deal of grinding, and fat, which causes the stomach to empty more slowly. The condition is called gastroparesis and it's thought that to be an autoimmune response when triggered by a virus. I've been taking Prilosec, which doesn't actually have anything to do with grinding or emptying, but it reduces the amount of acid the stomach produces, leaving more room for food, and lessens irritation of the stomach, giving it more time to heal. I was told by my GI doctor, back in the beginning of January, to take the Prilosec for two months, then, if all was well, to reduce the dose by half, and if that went well for a month, to start taking it every other day, and if that went well, to stop taking it all together after another month. If, at any point during this process, the stomach started to hurt again, I was to go back to taking two Prilosec a day and switch to a low-fat, low-fiber, mostly liquid diet for a while. Oh, and I should avoid catching any more viruses, because, apparently, once you acquire virus-related stomach mobility and emptying issues, you are vulnerable to having them reoccur any time you catch a virus in the future. What fun!

So the two months of taking the Prilosec went pretty well, though I had some trouble with hypoglycemic symptoms, and I was able to resume eating vegetables and fat and no longer had pain and nausea, so at the beginning of March, I decided to cut back to one a day. It did not go so well. The problem wasn't pain or nausea, it was low blood sugar. I'd already had to eat a great deal to keep up with my body's demands (and had gained weight as a consequence), but on the reduced dose, I was having to eat a full meal EVERY HOUR to maintain function. Otherwise I'd start yawning, then shaking, and then would come the nausea, irritation, difficulty speaking, and difficulty making decisions. I would become increasingly chilled and woozy and if I let it go too long, I'd get terrible migraines, too. Sometimes my hands would be shaking so badly I could hardly pick up food up off the plate to get it to my mouth. It was quite frightening. I couldn't drive because even if I didn't have symptoms, they would come on so swiftly and so severely that I could go from fine to unable to function in a matter of minutes. I tried to eat foods that stabilize blood sugar, meaning lots of fiber and protein, and I always had sugary juice and candy for when my blood sugar dropped because if I didn't catch it quickly (and sometimes even when I did), I would feel terrible for hours afterward. Anyway, I spent a week cramming my stomach full of food every hour and finally it couldn't take that kind of abuse any longer, so it stopped grinding and emptying properly again and I went back up on the full dose of Prilosec.

That didn't solve matters, however. I didn't go back to how I had felt before the taper. It was like my brain stopped working. I was spacey and shaky and couldn't think clearly. I lost much of my physical coordination and slept for hours and hours. I still needed to eat all the time, though I'd switched largely to liquids and soft things like custards. I'd finally gotten a glucometer to measure my blood sugar and the numbers didn't match up to how I felt. After several days of feeling absolutely terrible and unlike myself, I went to the doctor. The nurse practitioner who saw me downplayed the hypoglycemic symptoms since my blood sugar levels were within a safe range, though I disagree, believing that for some reason, most likely because of my medication and the state of my brain, my body's response to my blood sugar is off by as much as 30 mg/dL. I think my impairment at 90 mg/dL is very real and potentially very dangerous, even though 90 mg/dL is considered normal. However, I wasn't up to arguing with the nurse practitioner, who wasn't my regular doctor, and submitted to blood tests, hoping, though not expecting, to learn much. A few days later, the doctor's office called back with surprising news. The nurse practitioner thought the Prilosec might be interfering with my lithium absorption and that my level might be high, which I knew wouldn't be the case because I am well acquainted (unfortunately) with my body's symptoms for lithium toxicity. I can only tolerate a very low level of lithium, below what is considered the therapeutic range, so I had told her that if it came back as .3 mEq/L, that was normal. However, what the blood test revealed was that my lithium level was WAY lower than that. In other words, I had been suffering from lithium withdrawal. Lithium is my single most important psychiatric medication, so no wonder I felt awful! The solution was to wait at least an hour after taking my morning psych meds and my nighttime psych meds before taking my Prilosec. I very quickly started feeling better, though two and a half weeks later, my stomach still isn't quite back to normal function and I still have some trouble with low blood sugar, though not as severe as before.

So yes, the good times never end around here! I have no idea when I'll be able to get off the Prilosec and it can be rather depressing to think that that innocent little virus could wreak so much havoc, but, as with most of my health issues, it is exactly what my body WOULD do.

Here's the thing: there is a significant gut-brain connection. The enteric nervous system, with runs the body's gastrointestinal system, is often described as a "second brain," because of its complexity and ability to "learn," "think," and "remember." It is made up of approximately 100,000,000 neurons and contains more than 90% of the body's serotonin and 50% of the body's dopamine. I suffer from multiple brain-based disorders involving problems with serotonin and dopamine, so it's no surprise that, like many others with similar conditions, I have long had GI issues. It can go both ways--sometimes people who suffer from disorders of the enteric nervous system will find great relief in taking psychiatric medications, even though they do not have any diagnosed mental illnesses. In other words, one type of serotonin communication problem can be cured by the medication for another. I've also taken medications designed to treat GI issues that have resulted in psychiatric symptoms, so it's all very closely interwoven and no surprise whatsoever that I suffered from irritable bowel syndrome (IBS) since the time I was a baby. (Note: what follows is doubtlessly TMI for most people, but if you're at all interested in the different ways a gut can malfunction or would like to pity me for my many years of experiencing variations on the theme of gastrointestinal suffering, read on.)

It wasn't so bad at first. There were a few foods (bananas, raisin bran) that gave me cramping and/or diarrhea, which were easily enough avoided. Like everything else in my body (and life), it got worse when I hit puberty. Bananas weren't so much of a problem anymore, but all dried fruit became off limits, as did spicy food, and, worse still, I stopped being able to digest beans. This was very hard. I kept trying, hoping that maybe those post-Mexican-food bouts of diarrhea were a fluke, but I gave them up for good at the age of twelve after eating a bowl of chili for dinner in Butte, Montana (which is one hell of a depressing town, by the way) before driving on to Helena. We arrived at a freeway rest stop just in time, and the increasingly desperate hope that a rest stop would appear before the unthinkable happened, and the miserable time spent in the stall that followed, was enough to make me quit beans at last. It was terribly awkward to be a vegetarian that couldn't eat beans, but it was FAR more awkward to be a vegetarian that ate them.

When I was sixteen, I had my first serious run-in with gastrointestinal issues. Not so incidentally, I was going through the most severe depression of my adolescence. I developed epigastric pain and nausea and lost my appetite. I was repulsed by strong flavors and fat, so I primarily ate small amounts of white food-- plain rice, plain potatoes, plain white bread--and lost eight pounds. Eventually, I found my way to the GI doctor after the blood tests and abdominal ultrasound ordered by my regular doctor revealed nothing. To my extreme teenage mortification, part of the initial appointment with the GI doc involved a rectal exam. Other tests followed: an endoscopy that looked at my esophagus and stomach and found nothing but some irritation where they joined; a barium tracer test, where I swallowed two giant cups full of nasty fluid containing the radioactive element and then was X-rayed at regular intervals as it worked its way through my GI tract, revealing no abnormalities or movement issues. I took Prilosec and a stomach-coating slurry called Carafate to see if it was acid reflux that was causing my discomfort and the esophageal irritation, but there was no improvement. I then had a 24-hour ph test done. A probe, attached to a recording device, was threaded down my nose and into my stomach, taped in place, and worn for 24 hours. In case you were wondering, it was not the least bit comfortable! It did not record any incidents of acid reflux, either. The pain eventually subsided over the summer without its cause ever being diagnosed. It made for a miserable spring, though, and my school work (much to my dismay) was affected by my constant discomfort, my inability to eat, and my repeated absences from school because of medical tests.

My gut struck again three years later, this time in the form of diarrhea. Lots and lots of it. Blood tests and stool samples revealed nothing and so I found myself at the GI doctor's once again. This time around, I was treated to a colonoscopy. Here's the thing: if you're getting a colonoscopy as part of standard post-50-years-old cancer screening, the "prep" is not a big deal. If you need a colonoscopy because you're having intestinal trouble, the "prep," which purges the contents of your entire GI system, is horrific. Think simultaneous vomiting and diarrhea. After all that agony, I had to submit my bare bottom to the insertion of the camera. My only consolation was that a) I was sedated and b) this was what those doctors and nurses did ALL THE TIME, so my poor rump and rectum would be nothing remarkable (except for maybe its skinniness). Still, it wasn't exactly a fun experience and worst of all, it revealed nothing. The final diagnosis was IBS. I was told to eat lots of fiber, manage my stress, and hope for the best.

I was started on psychiatric medications a few years after the Summer of the Colonoscopy, which did lead to some positive changes in terms of my gut: my IBS sensitivity decreased a great deal and I could once again eat dried fruit, and, more importantly, beans! Oh, it was so wonderful to be able to eat beans again in all their varieties! I still couldn't eat spicy food and I began to have more and more trouble with cruciferous vegetables (cauliflower, cabbage, broccoli), but I didn't like cruciferous vegetables anyway, so that was no big loss.

While psych drugs may have improved things on the IBS front, my gut wasn't done giving me trouble. I'd always been an individual who tended toward loose stools, but in 2008, I got constipated. REALLY constipated. This was during the Geodon years (that's a whole other story) and I had one of my withdrawal episodes that left me in bed, virtually unable to move and extraordinarily nauseated, for a week and between not moving and not eating, my gut came to a halt and I developed a bowel impaction. That's a fancy term for "a hard lump o' stool that blocks your colon." Of course, it didn't get diagnosed as an impaction right away. There were various tests done, including a CT scan of my gut after being administered intravenous barium (much more pleasant than oral barium!). In the meantime, my slowed gut slowed me down. I got too sick and sluggish and queasy to work. My belly became hard and distended. I could barely eat and belched horribly when I did. For the first time in my life, I found myself carsick. I tried to keep active, but just walking around the block was an agonizing, exhausting, and sickening slog. You wouldn't think constipation could make you so sick, but it was awful. In the end, I went six weeks without a bowel movement or passing gas. The obstruction was eventually removed over a two-day course of laxatives and enemas (also on my list of Things That Aren't Fun). By the time it was all over, I'd lost sixteen pounds. Out of all of my unpleasant GI issues, the impacted bowel may have been the worst. I have been very paranoid ever since about the danger of getting constipated while in bed for long periods of time, especially since my top nausea drug can be very constipating.

Two years later, my gut was at it again, this time in the form of my old friend, diarrhea. I was pretty sure that it was related to reducing the dose of a medication I was on, but all my doctors disagreed. One, I'd been on the drug for months without it causing digestive upset, and two, it was not a drug that caused digestive upset. So I once again submitted to rounds of test and stool samples. I had to take several Imodium a day if I hoped to leave the house; otherwise I felt practically chained to the toilet. I started hoping that it WAS a parasite just because then there'd be something to treat! After several months of negative results and ongoing digestive woes, I went back up on my medication and the diarrhea went away. So I was right and the drug (which reduces neuron reactivity, by the way) had been causing the problem all along. Why I had no problems at 500 mg and persistent diarrhea at 400 mg is unknown, as is why I can now take 450 mg without any problems. Going back on to my previous dose didn't solve, everything, though. My gut was all out of whack, not functioning smoothly or properly, and I did develop the kind of constipation and vomiting that made me worry I was en route for another impaction. I also started suffering from episodes of severe cramping that were not accompanied by any kind of bowel movement. So back to the doctor I went. I got the diagnosis, once again, of IBS--it was just acting up in a different way this time. I was given a medication that helped enormously with the cramping, but I found that if I took it for several days in a row, I developed psychiatric symptoms. So it is strictly an as-needed drug to be taken in small amounts, but I'm grateful to have it.

As you can see, every 2-4 years since my teens I've developed some kind of major GI issue that usually takes several months and lots of tests to straighten out. It's just the kind of body I have. It's also why I included IBS on my disability application because it crops up again and again, making me sick and impacting the medications that I can take.

And so here I am, currently able to eat spicy food (which happened all of a sudden--a pharmacist told me that what the gut can digest can be switch quite abruptly when you have bipolar disorder), but not cruciferous vegetables or greasy, fatty food. My psychiatric meds likely contributed to the virus' impact on my stomach and now the stomach-soothing medication interferes with the absorption of my psych meds, which then impacts how my brain responds to my blood sugar level. So yes, good times!

The moral of this story: if you've got neuron communication problems in your brain, you've probably got them in your gut as well. I hope for your sake you are afflicted with neither!

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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.

Gratitude

Unfavorable extremes

We've had terrible weather around here as of late, at least from my perspective. Three days of wind and rain and generally stormy weather left me so sick that I was only just barely well enough to attend my family's Thanksgiving dinner and certainly not up to writing a post on gratitude as I had hoped. Then the barometer swung dramatically the other way, which made me feel just as awful, and I was forced to delay finishing this post once again. This essay has been pieced together over four different days, but the delays caused by these unavoidable bouts of terrible, weather-related fatigue are one of the realities of my illness and are exactly why I work so hard to find reasons to be happy in a world where I have so little control over how I physically feel. Also, in a way I'm glad this post was delayed because it's almost more appropriate to write about gratitude on a day other than Thanksgiving when part of my strategy for coping with the migraines is finding things to be grateful about every single day. While this may cover things that I mentioned in my 30th birthday post, I feel it's a theme that can't be repeated often enough.

People often wonder how I'm able to cope with being disabled at this age and living with pain on the daily basis. My strategy involves being grateful for what I have rather than being unhappy about what I lack. Happiness, I've found, is easiest to discover when you want what you have. There are, of course, situations that people can find themselves in that are truly awful, but if many of your needs are being met, you may find that it's possible to realize happiness within your limitations, whatever they may be.

Better living through chemistry

First of all, let me make something clear: I wasn't born this way. In fact, you might say I was physically incapable of truly feeling happiness for the first twenty-five years of my life because of screwy brain chemistry. Back when I was so depressed, it would just make me feel worse a lot of the time to tally up what I had to be grateful for because I'd think, "What is wrong with me, why can't I feel glad when I have all these positive things in my life? I must be a terrible, flawed person." It took the introduction of lithium into my system for my brain to be capable of feeling happiness. Within two weeks of starting lithium, it was like the sun had come out. I'm grateful for Lamictal and Effexor, too, but without lithium my life would be so much harder.

It wasn't lithium alone that made me capable of seeing the world in a way that focuses on what I have to be grateful for. I went through some excellent and intensive therapy that trained my brain to recognize these things. (Of course, lithium was essential in making me able to absorb and embrace the therapy. I know this because I started the therapy before I started lithium and there was a marked before-and-after difference!) One of the central tenants of Dialectical Behavior Therapy is that it is possible to hold two opposing beliefs in your mind at the same time, namely, "My situation is hard, unfair, miserable, disappointing, etc." AND "I am capable of feeling happiness, joy, pleasure, satisfaction, etc." This way of thinking can free you. Feeling happy in no way invalidates the reality that you are suffering. But suffering in no way prevents you from finding happiness. To find happiness involves learning to see it, to find it, to will it, to make it. This doesn't come naturally or easily. But if you become skillful enough, it becomes unthinkable to live any other way.

Cases in point:

I still clean up alright

A few days ago, for example, I wasn't feeling well because of the weather, but I had the thought that even though my life isn't what I wish it could be, at least I like what I see when the mirror. There are plenty of people out there who don't, but I do. And so, in that way, I am lucky. The next day, I was grateful for my mother. I had a sudden resurgence of a tough emotional issue that made me seek her out just before she was going to bed and I dumped all this trouble onto her lap and she listened to me, held me, and reassured me, and I'm so grateful to have her there to do all those things. On Thanksgiving Day, I had initially been feeling poorly enough that I was not sure I would be able to appear at dinner at all. However, when the time came, I was at the table, fully dressed (including makeup!), and while I only made it through dinner and not any of the festivities before or after, I was present for the meal and ate well. The other day I was grateful for the company of my dog on a rainy afternoon when the barometric pressure had left me fit for nothing but dozing in bed. The dog, of course, thought this was the best possible thing that could ever happen

and she nestled up against me and tucked her head against my chest as I slowly stroked her velvety fur and listened to the sound of the falling rain. It was a very peaceful and I felt lucky that I was able to let go of the notion that I should be trying to get stuff done and accept that I was unable to do more than snuggle the dog and, furthermore, to appreciate how wonderfully warm and soft and soothing my bed was on that stormy afternoon.

Other things I am routinely grateful for include having a warm, safe place to live; caring, respectful, medically-literate parents who are able to afford the health care I need; the love and friendship of my wonderful sister; the excellent doctors and other care providers I have on my team; my art and ability to create; and the internet, which allows me to keep in touch with many people, share and sell my art, and even watch TV. In fact, I've become so accustomed to seeing the world through the eyes of someone who's grateful that is almost difficult for me to see myself as someone who is unlucky or in a bad situation. Yeah, yeah, I have the daily migraines and all of the complications that go with that, and sometimes I do get frustrated by how little I can do, but often it doesn't seem worth complaining, not when I have so much I'm grateful for.

Abbey celebrates the simple
pleasure of peanut butter

My dog also helps. Canine critics have been known to sniff at the way dogs are so goofy and happy about everything, but really, what's so bad about that? Abbey's favorite time of day is when my parents have come home from work and we're all standing around in the kitchen together. Food is being prepared, she knows she will be fed in just a few minutes, and in the meantime she will drum out her happiness on the cabinet doors with her tail and bask in the heat of the oven whenever the door is opened. This scenario happens almost every night and yet her delight in it never lessens. And why should it? It is wonderful to have the whole family together and to know that dinner is imminent. Why on earth do we take that for granted? She teaches me this lesson in a dozen different ways every day and it keeps me focused on the good things I have right now, right in front of me.

It took a nice camera to take this picture, but all it took to find it was keeping my eyes open.
I found this rain-drenched hydrangea just around the corner from my house.

Besides always looking for reasons to be grateful, one of the biggest and most important factors in my ability to experience happiness on a regular basis despite my situation is that I actively cultivate a sense of wonder. I'm highly visual, so it's very easy for me to look around at the world in a way that sees all that is marvelous, but I think anyone who is willing to break away from passively looking at the world and start seeing the world can learn to do this, too. My focus on the macro in my photography is one result of this sense of wonder. One of the reasons why I love taking photos is because it enables me to show other people the world as I see it. There's so much amazing detail in even the most ordinary objects that fill our lives. I'm always on the lookout for textures or patterns, inspecting objects down to their most minute details and watching how they change in appearance depending on how the light strikes them. And, of course, there's plenty of amazing things to be seen outside in the natural world. I look for wonderful things on all possible scales, from big beautiful clouds painted pink and orange by the setting sun to the smallest streak of color on the very edge of the petal of a flower. Again, I look for textures, for details, for colors. There are so many unexpectedly beautiful things all around us if you look with your eyes truly open!

Beautiful color, evocative odor

I'm highly visual, but we experience the world through all our senses. Truly paying attention to music or the taste of favorite foods or scents that invoke nostalgia are all great ways to awaken your sense of wonder. There were a few days last week when the vine maple leaves on the trees in the backyard had turned yellow and that's when I smelled it, the scent that for me defines and encompasses the essence of all things autumn, the slightly spicy smell that maple leaves give off when they've turned color and are starting to fall. It's a smell I remember from childhood autumns and the giant maple tree that grew by my elementary school's portable classrooms, an aroma I carried in my heart and longed for during four long autumns in Florida, a scent of emotional importance that ranks up there with the smell of the Noble firs that we gets every year as Christmas trees and the memory of my grandmother's perfume. If you're awake, if you're paying attention, the world is littered with wonderful sounds and aromas and flavors!

Laugh all you want, but I think the
centuries of innovation and all the
tiny gears that make this watch tick
are pretty amazing.

An active sense of wonder doesn't just have to be about sensory things. My friends teased me a little while back when I mentioned, in a status update, that clocks were pretty darn cool, but think about it! It took millenniums of innovation for clocks as we know them to come into being. They are such a basic background part of our lives now that we don't spend much time thinking about how amazing it is that all those little gears can work together, evenly dividing the passage of time in three different ways. Of course, digital clocks are very cool in their own way, but it's so satisfying for me to think about the development of clocks, from primitive machines that showed only the hours, eventually evolving to show quarter hours and minutes, becoming more complex and accurate until they could to be shrunk down and carried on the person. Each innovation built upon the last over many centuries and now we absolutely take it for granted that we can accurately determine the time by looking at watches on our wrists or clocks on our walls.

Petrified wood

Another cool thing that we also take for granted is the ability of blood to clot. It's fundamental. The survival of living things depends on it. But unless you happen to be a hemophiliac, you probably don't spend much time thinking about how cool it is that when you bleed, you clot, and that your blood doesn't clot (except under specific medical circumstances) when it's circulating around your body. Talk about an awesome evolutionary adaptation! Or how about this: take a look at that rock in the photo on the right. Once upon a time, this rock was a tree--back in the days of Pangea! We're talking about something that is somewhere in the neighborhood of 250 million years old. 250 million years! And now you can see it sitting on the ground in Arizona. Isn't that incredible?

Science is cool. Ideas are cool. There's a lot amazing technology out there. Our bodies, even when being difficult, are absolutely fascinating. There are so many engrossing sights and stories and sounds to be absorbed. So much of the world is beautiful.

One of my favorite Mouse photos makes
something beautiful out of poisoned grass

It's also true that there is much that is hard and horrible and ugly and unfair about the world. It used to be that that was the only way I was capable of seeing it. I remember how, in the early fall of 2004, when I was really, really sick, I saw dead trees everywhere. There were a lot of dead trees around. Most of the dead ones were young and had recently planted, so there must have been a combination of a cold winter and a dry summer or something like that that killed them. But to me, those small, dead trees seemed like the saddest possible thing and, furthermore, a representation of the world at large. I could still see a world full of dead trees, so to speak, if I wanted to. But I choose not to. I choose to protect myself from a certain part of what happens in the world, not because I wish to deny it, but because I can't afford to make myself miserable over things that are beyond my control. I can't prevent hunger or war or greed. I can't change the weather or transform my brain or wish away my migraines. However, I can choose how I feel.

I choose to be happy. I choose to be grateful.

My Migraines: A Visual Handbook

One interesting characteristic of my migraines is that I can categorize them in terms of colored light. Migraines lower than a 5 out of 10 on my personal pain scale generally do not have a colors, but once the pain starts to climb, the migraines shift from best being described verbally to a pain that I understand as a visual experience. This is not to say that I literally see colored lights (blinking blue aura lights are a different matter entirely) or the visual distortions experienced by some migraine sufferers, but it's how I see the pain in my mind. This made it very hard to explain my migraine pain to doctors during my first couple years as a migraineur because it seemed silly, when asked to describe my headaches, to say that they felt like columns of green light, but it really was the best possible description and I have since read that seeing migraines this way is not unheard of. Just as the nature of my migraines have changed over time, I have found that my migraine colors have changed, too. I do not get green lights migraines anymore, but for my first year and of half as a migraine sufferer, it was green lights and nothing else. 

Those early migraines were monsters. They always lasted for three days and the pain was immense, averaging an 8 out of 10 on my personal pain scale. Once during this period I had a migraine so severe that I actually accepted death and gave myself permission to pass on if I needed to; it seemed impossible that you could be in so much pain and not die. I was horribly light sensitive, noise sensitive, and nauseated during those three days and so I would lie in bed as time melted away and watch my green lights for hours.

A green lights migraine.

What I saw was a theater of sorts for my headache: the dark stage represented my skull and the backdrop was a velvety blackness of unknown depth. As I watched, columns of green light would swell forth from my skull, slowly rising and falling, blooming and fading. I had the sense that the interior of my skull was bursting with utterly sickening and blindingly bright green light, but all that I saw of it were these shafts of light that pierced the surface. It's difficult to precisely convey the brilliance and terrible luminosity of this green light; to reach for another metaphor, it was like watching an aurora borealis of pain. I also had the sense that a low, roiling, icy fog of pain constantly blew through this landscape of green columns, a pain that was different from the pain of the lights, a pain so cold that it cut my brain like a razor blade. I must have occasionally eaten a little during those three-day migraines, and surely slept, and sometimes daylight must have seeped into my room, but all I remember is watching this endless light show: the bloom

and fade of the columns as they rose and fell, the sickening pain of the blowing fog as it passed through the illuminating shafts of light, the blackness against which the the lights put on their show, and the total silence of the dead, black air in that space. It was beautiful, this pain, green and translucent and haunting and complete, and when the lights faded at last after three days, I would have a sense of emerging from the underworld.

The first time I had a migraine without the green lights, I initially insisted that it wasn't one. When asked at the ER if I would characterize it as the worst headache I'd ever had (for those who've never had a migraine, this is a standard diagnostic question; if you answer "yes," there's an excellent chance that you're suffering from a migraine), I explained that I'd had migraines before, but this headache was totally different. It had no colors and it burned right on the surface of the scalp. It was my first "transformed" migraine, too: it lasted for fourteen days before finally succumbing to a regimen of anti-inflammatory injections given every six hours for two days. While I would have many more migraines, lasting for longer and longer periods of time, I would not experience a migraine in terms of color again until the onset of chronic migraines two years ago.

A blue lights migraine with beams, cracks, blotches, and patches.

These days, when I have a migraine severe enough to shift into colors mode, the light is almost always blue. Think, perhaps, of the blue flames emitted by a gas burner when imagining the color and translucency, though a blue migraine is not a burning one. The shafts of light are much smaller than those of a green lights migraine, more beams than columns, and more irregularly scattered across the stage that is my skull, and tend to rise and fall less dramatically. Sometimes these beams of blue light are located along glowing fault lines of blue, but sometimes a crack emitting blue light will appear without any shafts of light emanating from it. Patches and blotches of luminous blue pain that seem to hover just above the surface of my skull may also appear with or without the presence of blue beams. In the parlance of my migraines, a blotch is a area of pain generally not much larger than a quarter and sometimes much smaller, while patches can be as large as the palm of my hand. Blue beams only appear out of the top of my head, while patches are generally located only on the back and sides. A really bad blue lights migraine may morph into a twin mohawks migraine, where either spikes or hundreds of painful pinpoint beams will shoot out in parallel lines running across the top and partway down the back of my head. The pain of a blue lights migraine is similar to that of a green lights migraine, but, like the shafts of light themselves, somehow thinner.

A blue twin mohawks migraine.

I also get red lights migraines, which are different from blue light migraines because the pain stays close to the head and is more of a burn than an ethereal agony. Most often a red lights migraine (which, to be specific, is an orangish-red rather than a true red) closely resembles the element from a toaster: a red-hot crinkly wire that casts a reddish-orange glow of pain around it. Red lights migraines can also form large smoldering patches.

A red lights migraine "element" and patch.

Just as a blue lights migraine has a worst form, the twin mohawks, a red lights migraine can transform into a dreaded brain-in-flames migraine. This is a migraine where the burning sensation covers the entire surface of the scalp and has reached an intensity that makes it feel like a match has been touched to the highly flammable lining of the brain. Rather than a bright blaze, a brain-in-flames migraine is a low, hot fire, nearly translucent, with a blue base to the small orange flames that never rise more than an inch or two above the head. Virtually the only way to get rid of a brain-in-flames migraine is to sleep it off, though sleep can be hard to come by when one's brain is on fire.

A brain-in-flames migraine.

Patches occur in both red and blue migraines, though the sensations are quite different. A "horns" migraine can be composed of either red or blue light and has a similar sensation in both colors. In short, it feels like an evil, painful pair of devil horns has sprouted from the temples. A horns migraine is a very bad one, not quite as bad as a twin mohawks migraine, but blue horns are sometimes the precursor to those terrible spikes and dreadful enough even if it doesn't make that final transformation.

A red horns migraine.

All of the migraines I have so far described are translucent, thin, glowing, and emanate outward from the head or, in the case of patches and elements, hover just above the scalp. While there is the occasional "verbal-only" migraine that can be described as a paper cut on the surface of the brain (other "verbal-only" migraines, or migraines without color, include the somewhat inward oriented "tightening scalp" and "collapsing eye" type pains), all of the rest of the migraines project outward at various speeds, distances, and intensities. It was not until I had my head injury this summer that I encountered a new sort of migraine: a thick, opaque, yellow-orange headache of a decidedly inward orientation.

A thick, opaque, yellow-orange migraine.

A yellow-orange migraine appears to me as a fat scribble on the brain, as if someone took a blunt oil pastel (which is thicker and greasier than a crayon) and made a vicious doodle. Because of the association between this migraine and the head injury, it is located as shown in the illustration above, starting roughly at the hairline above the right eye and extending more or less along a line that passes over the injury site, which was on the right side of the crown of my head about as far back as my ear. While the thick, opaque, yellow-orange scribble itself does not seem to penetrate the brain, it is accompanied by the sensation of having one's head smashed in by a baseball bat or large, blunt ax or of the brain being violently attacked by chain or circular saw. While the luminous light migraines have an otherworldly sort of awfulness, I find this opaque migraine more disturbing. It may just be because it is associated with the extreme nausea, light sensitivity, noise sensitivity, and fatigue that went with the concussion or that I'm so used to having translucent migraines, but when I had an opaque, thick, yellow-orange migraine last week for the first time since those weeks following the head injury, there was something very nasty and just wrong about it. I work hard to prevent my headaches from escalating to the twin mohawks or brain-in-flames point, but I'd prefer to have either of those over a yellow-orange migraine!

And that, in short, is the lexicon of my "visual" migraines: green lights, blue lights, red lights, and opaque yellow-orange scrawls. I hope that this illustrated guide is illuminating for those who have never had a migraine or who suffer from a different kind of migraine, offering a glimpse into the world of colored pain that lurks inside my head.

A Day of Mourning: A Migraine Anniversary

The summer of 2009 seems particularly golden in my memory, but for good reason. With three years of difficult medication withdrawal finally behind me, I found myself in the best physical and mental health I'd been in my entire life. At long last, I was completely free of the suffocating bipolar II depression that had burdened me since I was ten. The general and social anxiety that had been eating me alive for even longer than that was gone, too. During the years when I was on Geodon, the slightest bit of physical activity could make me horribly sick for days, but with the Geodon completely totally out of my system at last, I found myself well enough to take the dog on several vigorous three- to four-mile walks every week and I'd started swimming laps, too. I'd voluntarily cut my hours at the flower shop when the economy tanked since I was the only employee who had no rent or mortgage to pay, so I spent my time exploring grad school options, photographing and writing a children's book, going to matinee plays, and exercising with the dog. It was a particularly hot summer and so to keep cool, Abbey and I had gotten into the habit of hiking in the various wonderful wooded parks that can be found around my suburban Seattle home. I'd never felt so great in my life. I even bought my very first car! I was incredibly excited about my future. During the past six and a half years, as I struggled first to get my bipolar II under control and then to get off the psychiatric medication Geodon, I'd had to abandon the idea of making future plans. There were so many unexpected twists and turns, especially with the medication withdrawal, where every time I made progress, some new monstrous side effect would rear its ugly head. I learned to be patient, to simply exist in the moment. But finally, finally I could chose how I wanted my life to look from here on out. I decided that acquiring some graphic design skills would be a definite asset to whatever creative shape my life's work might take, so I enrolled in classes in Adobe Photoshop, Illustrator, and Flash at the nearby technical college. I really enjoyed the work. For the first time since 2003, when my life was virtually shut down when I lost all control of the bipolar II depression that I had coped with for so long, I was finally engaging every single part of my brain. It felt absolutely amazing.

On Monday, October 19th, 2009, around five in the afternoon, I was sitting on the couch in our family room doing some reading for my Flash class. The last week had been unusually stressful; I'd had 35 hours of work at the flower shop and projects due in three different classes. I'd submitted the last of those projects earlier in the day and I finally had a little breathing room. As I read, I realized that, out of nowhere, my mood had plummeted. I remember looking up from my book and quizzically examining this unexplained depression. Was my blood sugar low? Had I missed a medication dose? Was I overtired? I couldn't pinpoint the reason, so I chalked it up to some strange metabolic fluctuation and went back to my reading.

Fifteen minutes later, the migraine began.

It had been a while since I'd had a migraine; other than one a few months before, I'd been migraine-free for three years after switching to continuous birth control pills, thereby eliminating the menstrual cycle that had been my sole trigger since the migraines began in 2002. There is no mistaking a migraine, though, and I took my Migranal nasal spray right away. I realized that the mood drop had been a prodromal, or pre-migraine, symptom, and was glad to have that little mystery cleared up. But what didn't clear up was the migraine. Two years later, the migraines remain.

I'd already had a difficult time with the migraines and had been ecstatic when switching to continuous birth control pills had ceased their attacks. I had my first migraine in July of 2002. Between then and 2006, I'd never gained much control over them. Triptan drugs, such as Imitrex, were relatively new at the time and had changed the life of many a migraineur for the better, but they never did a thing for me and I eventually tried eight or nine of them. The migraines were always the same: three days of haunting pain on both sides of my head, accompanied by nausea, light sensitivity, and noise sensitivity. I eventually found that DHE (ergotamine), as an injection or a nasal spray, was somewhat more effective, and sometimes receiving anti-inflammatory injections several days in a row could break a headache. As the Geodon withdrawal worsened, though, so did the migraines. Although the pain was somewhat less, three-day migraines were a thing of the past; I now had migraines that lasted nine days, fourteen days, or more. It was after I had a migraine that lasted for four weeks despite several days spent in the hospital infusion room receiving IV steroids that my neurologist suggested the switch to continuous birth control pills that proved so effective for the next three years. I sometimes had so-called ice pick headaches, little migraines that lasted for only a second or two, and I noticed they increased if I ate chocolate, so I gave up chocolate and otherwise did just fine on the headache front.

So what caused the migraines to start again and to never go away? The migraine I'd had back in August I'd chalked up to a combination of antibiotics decreasing the effectiveness of the birth control pills, a snack of dark chocolate, and the letdown (a fairly common migraine trigger) relief of an emotionally charged reunion. It lasted for about six weeks, once again impervious to treatment, including IV steroids, but it hadn't been too severe, not like the old migraines, and it seemed unlikely that those circumstances would ever happen again. So what happened on October 19th, 2009? The best explanation that my neurologist and I can come up with is that the initial triggers may have been the increased visual and intellectual stimulation of my graphic design studies plus the letdown after my busy week, but the fact that the migraines have never gone away, despite the cessation of all potential triggers for months following the onset, may very well be the work of my old nemesis, Geodon. Geodon has the nasty habit of rewiring the brain during withdrawal and my withdrawal had been far more awful and prolonged than most. There's no way of proving this theory, of course. And add to that the fact that this is exactly the kind of thing my brain WOULD do.

There's simply no getting around the fact that I have an extraordinary brain. How is it extraordinary? Well, it is incredibly sensitive to EVERYTHING. I've had a sensory processing disorder since birth that has gotten progressively worse (which is unusual) as I've gotten older. In essence, every single one of my five senses is way more sensitive than the average person's. For many years, other than in the realm of touch, it was to my advantage to see or hear as much as 75% more than other people. It helped make me a great writer, artist, and employee, for example. The chemistry of my brain proved to be incredibly sensitive, too. Bipolar II is the result of chemical imbalance; I would discover that correcting for this imbalance with various psychiatric drugs, including Geodon, proved to be a tricky business. I was prone to never-before-reported or unusually severe side effects when adjusting my medications by even the tiniest amount. (This is why it took me three years to withdraw from Geodon, versus one week, which is more typical.) I was sensitive to hormonal changes, too, which played a role in my migraines, my sensory sensitivity, and my bipolar II in addition to making my life more or less a living hell from the onset of menstruation at the age of eleven. Add to all this the fact that I'm incredibly creative and unusually intelligent. I have a brain that is far more active than the average person's, far more connected, takes in far more information, and is far more sensitive to every imaginable stimuli. This is what makes me a talented photography, artist, and writer, it helps me be both funny and wise, and it's also the recipe for a migraine disaster.

The chemical workings of migraines are not fully understood, but a migraine is, in simplest terms, an inappropriate reaction by the brain to ordinary stimuli. As with any type of defensive sensitivity, such as allergies, it can morph into a downward spiral: the first reaction makes the brain more sensitive, causing further reactions, causing the brain to be even more sensitive, making things worse still. My brain is essentially stuck in a loop of heightened sensitivity where virtually every type of sensory stimuli, but particularly visual and aural ones, is interpreted by the brain as an attack, resulting in more migraines. My body is locked in a permanent flight state; since the migraines started, my heart rate has seldom dropped below 90 beats per minute. It's a painful and exhausting and unfortunately, I've found only a modicum of relief from medication (which has been problematic for the usual reasons), acupuncture, and physical therapy, among other treatments. The single best way to keep the migraines at a manageable level is to avoid as much stimuli as possible. Being able to use the computer, which allows me to find happiness through working on digital photography and tethers me, thanks to social networks, to the outside world, is important, despite the fact that looking at a lit screen is a major trigger. I have a number of ways of reducing the impact of the screen on my brain, and one of them is limiting my exposure to just about everything else.

Despite the incredible smallness of my world created by my necessary isolation from almost everything, I find many reasons on a daily basis to be happy. The Geodon withdrawal years were great training for this, as was the excellent dialectical behavior therapy I received while working on my anxiety and depression. How I have become so skilled at finding satisfaction in my situation that I actually find it difficult to be unhappy is the subject for a different post; today, I am here to recognize what I've lost.

One of the things I miss the most? Being able to wear stylish clothes.

I've always enjoyed clothes, even during the years when my desire to dress well conflicted with my anxiety of being looked at, but from around 2005 or so, when my anxiety decreased, I really loved getting dressed up. I wore jeans and fleeces for my job at the flower shop, so on days when I went to get my hair cut or see my psychiatrist or my therapist, all located within blocks of each other right in the heart of downtown Seattle, I'd get all gussied up and take myself out to lunch at a nice restaurant and stroll through Nordstrom's to see what was new. I was such a regular there that they knew me by name! I saved most of what I earned, but clothes were one thing I spent money on. I have a particularly weakness for snazzy coats! Even when I was working less in 2009 and stopped taking myself out for nice lunches and buying new outfits on a regular basis, I still loved getting dressed up. I wear clothes well, being of a tall, slender build and I have a naturally dramatic look, with my short dark hair, fair skin, and large eyes. It was fairly common for me to be stopped in the streets by strangers who wanted to tell me I was beautiful.

Looking at me today, you would be unlikely to say, as many did in the past, that I should be a model. I wear a uniform of sweatpants and sweatshirts and a few funky T-shirts. Unless I'm leaving the house, I let my hair do whatever wacky bed-head thing it was doing when I got out of bed. I'd estimate that I actually style my hair with products fewer than half a dozen times per year; in the past, it was one of the first things I did every morning. I still clean up nice when I have a reason to clean up (Christmas dinner, for example), but it's exhausting now to even wear jeans, much less heels or makeup or anything less comfy than a T-shirt. Let me repeat that: it makes me physically tired to wear jeans. That is what my life has become. Just before the migraines started, I bought a pair of fabulous slouchy gray suede boots; I had to return them unworn. There's no point in buying nice clothes anymore because I am unable to wear them. Slouchy gray sweatpants? Yes. Jackets and shoes and cool tops? No. I miss that so much.

I also really miss being able to walk the dog. I've never been a particularly physically active person, between having short hamstrings since birth and inflamed growth plates in my feet while I was a kid and then the exercise-induced asthma and the weird exercise-makes-me-horribly-ill problem during the Geodon years, but walking a dog is such a nice thing to do. I was really getting into training her up and was even in the process of vetting potential dog companions to start going on walks with us so that she could build up her dog-dog social skills.  I've managed to walk her a few times now with Mr. Gorgeous, the collie, since the migraines started, but it's an exceptionally exhausting activity and often beyond my abilities. I miss walking with her in the woods and walking just around the neighborhood. It makes her so happy to go on a walk and it made me happy to make her so happy. I was also enjoying building up my strength and stamina. That's all gone now. Every few months or so I'm up for taking Abbey on a short walk, but it's hard work. Fortunately, she's a naturally low energy dog, so not going on walks hasn't impacted her behavior, but I miss being able to do that with her and for her.

Another thing that's hard about being so disabled by the migraines is my inability to leave that house at will. I COULD leave the house, but so often it isn't worth it. I only had my car for a month and a half before I had to give up driving it almost altogether. I may go months without driving. Sometimes I feel like my medication has slowed my reaction time too much for it to be safe for me to be behind the wheel, but most of the time I don't drive because it's simply too demanding. If you're accustomed to driving all the time, there are all kinds of behaviors and decisions you make that have become automatic, but you are actually processing an incredible amount of information. For me, none of that information goes into the background. Having to pay so much attention to everything around you is exhausting, especially since all of it is MOVING. Being a passenger is hard work, too, because of all the moving, flickering light and the endless, overwhelming visual information of passing scenery. As a result, most often I only leave the house for medical appointments. It's just not worth it. That means even simple errands must go undone or be delegated to others. It's sad, too, because as a family, we always liked to go on evening drives for a little treat. I particularly liked doing the so-called Two Bridges tour at sunset, a 33-mile round-trip route that involved driving on both of the floating bridges that cross Lake Washington. If I'm not feeling well, especially if I seem a little depressed, my parents will offer to take me on a drive, but being out, especially when the sun is setting or after dark, when headlights and streetlights turn on, simply makes the headaches worse. In not being able to leave the house, I've lost not just a convenience, but a pleasure.

I've always been an introvert, thankfully, so not being able to see friends on a regular basis isn't hard, but it saddens me when a good friend visits from out-of-town and I'm not well enough to see them, or when I have to cut short my appearances at holiday dinners or other parties because the stress of being social has drained my tiny reserve of energy. Talking is tiring. Laughing is tiring. Being in surroundings where multiple conversations are going on at once is tiring. I find the world beyond my house, where there is so much noise and so much visual information, to be exhausting. Socializing is just too hard.

I miss being able to travel. I miss going to movies and plays or even being able to watch some of my favorite movies at home. I miss being able to listen to music. And I miss reading.

One of the things that I really miss, right up there with being able to wear fun clothes, is reading the New Yorker. Back when I was working at the flower shop, for several years I was on a schedule of working Tuesday, Thursday, Friday, and Saturday. (We worked ten hours days, allowing for three days off each week.) Sundays were spent with my family, Wednesdays were frequently spent in downtown Seattle, dressed to the nines, but Mondays were reserved for reading the New Yorker from cover to cover. The latest New Yorker would arrive on Friday, so when I had the house to myself on Monday morning, I'd curl up on the couch and read the magazine straight through, every single article, a process that took me until about 3:30 in the afternoon. I loved the complexity of the prose (though I did have a game called "Hunt the Palimpsest," since "palimpsest," a word seldom used in conversation, tended to turn up somewhere in almost every issue) and the complexity of the ideas. I considered it my duty as a citizen of both this country and the world to be well-informed and so was in the habit of thoroughly reading the newspaper as well, including boring-sounding articles, but the New Yorker was a more of an indulgence, despite the wealth of information it might contain. I've always been a prodigious reader, the sort that was actually glad to sit on the runway at O'Hare for an extra hour during a cross-country trip from Seattle to New York City because it gave me more time to read War and Peace, and I always was reading several books at a time from the genre known as literary fiction (as well as anything with writing on it that happened to be in front of me), but the New Yorker was a special weekly treat. When the migraines started, I had to give it up. The print was too small, for one. But also it became too hard to think about the ideas. It tired me to read that convoluted prose and I just didn't have the intellectual stamina anymore to keep up with an in-depth article. I've had to give up a lot of my reading, not just the New Yorker. I skim the paper now. I'm more likely to be reading young adult novels than literary fiction these days. The print is larger, the ideas are simpler, the vocabulary is smaller: those are my current standards for reading. I was the kind of reader who was tackling The Brothers Karamazov for pleasure at the age of 15, who always had a thing for 19th-century Russian literature and didn't bother to take classes on 19th-century British novels in college because I'd already read all the books on the syllabus; now, at the age of 30, I'm back to reading the books I put aside when I was 10.

In addition to things that I used to do that I can't do any more, there are things that I'm unlikely to be able to do in the future because of the migraines.

Writing is one of them. I've written this long post, obviously, but that's not the kind of writing I'm talking about (though I frequently go through periods where this sort of thing is absolutely beyond my capabilities as well). I'm talking about creative writing. Even before I knew how to write, I was a teller of stories. Since the age of six, when I at last had the necessary skills to put my thoughts on paper, it was my firm belief that I would be a writer when I grew up. Over the years, I won a number of writing awards, including on the national level, and every single creative writer teacher I've ever had considered me to be one of the most talented students they'd ever had the pleasure of teaching. I had decided to commit to being a writer after I graduated from college and was in a MFA writing program when my mental health collapsed in 2003. During the Geodon years, my mind was too cloudy to write much of the time (creative writing requires a clarity of thinking and articulation far beyond what is required to write an email or even a blog post), but during that golden summer of 2009, I was ready to take a story I had been working on for years to the next level and turn it into a novel. I was seriously engaged in doing the formal research that would be necessary to flesh out the story. There I was, doing the groundwork for A NOVEL. That's a momentous step for a writer. And then the migraines began, my thinking clouded once again, my basic ability to articulate often faltered, and the verbal branch of my creativity sank into dormancy. Maybe things will change, but it's hard to imagine my mind become nimble enough to write fiction as long as the migraines last. Also, there's the practical aspect of not being able to tolerate looking at black text on a white background of any kind for very long. I still think about the plot of my novel and perhaps it will eventually get written, but there's no guarantee. For nearly twenty-five years, being a writer was part of my identity; there days, I'm just a migraineur.

I do have some concerns about ever living independently; it's not easy to be 30 and to know that your best bet for succeeding on your own is to live in subsidized housing for seniors. (Most also allow people with disabilities and have the advantage of providing transportation to grocery stores, etc.) But what saddens me more is the fact that I'm likely to spend my life alone.

Thankfully, I was deeply ambivalent on the subject of having children long before it became absolutely essential from a medical standpoint that I do not. I was, however, looking forward to spending my life with someone. I had no doubt that I would eventually find a man with whom I would like to share the rest of my life. I was particularly looking forward to being in a relationship, at long last, as an individual without significant anxiety issues! I know of people with chronic fatigue syndrome, fibromyalgia, and other debilitating disabilities who have found love, but it's just so hard for me to imagine such a thing happening for me. Who, honestly, would want to spend all of their time with someone who needs so much care, who can't do any of the shopping, the cleaning, the cooking, or other domestic activities, who can't go to movies or shows or sporting events or virtually anywhere out in public, who can't tolerate seeing friends or going to parties or even having the radio on around the house, whose needs and limitations must always take precedence? I'm a likable person, but I just can't see all that work being worth someone's while. There'd be no PARTNERSHIP. Oh, and thanks to medication side effects, it'd have to be platonic relationship, too. On the off chance that there is some guy out there, who, in addition to being the sort of person I would like to have around, is prepared to devote his life to taking care of me, how on earth would I connect with him? The internet, presumably, is how you might find such a person, but how would I get to know him well enough to throw my life into his hands when I can barely tolerate spending time in the company of my closest family members? Maybe things will change, maybe I'll get better, but the cold hard truth is that it's extremely unlikely that I'll ever be able to marry or enter into some similar sort of domestic partnership and that's just depressing.

It simply has to be said: a truly terrible thing has happened to me. Oh, I make do alright, I'm a champion when it comes to coping, I'm great at living in the moment and finding happiness within my limitations, but that doesn't change the fact that being afflicted and disabled by chronic migraines is an awful way to have to live. After I post this, I'll take a long hot shower in the dark to help quiet my overstimulated migraine brain and then I'll go back to enjoying my dog and my camera and my family and living to the best of my ability. The summer of 2009, that particular golden era of my life that ended around five o'clock two years ago today, is gone. I've lost a lot. But my life is now and my art is calling and I keep on moving forward.

That Which Must Be Endured

For those who are not familiar with how migraines work (it turned out this group included my parents), a little synopsis plus a quick lesson in brain anatomy may be helpful in understanding why bumping my head in a household accident has had such a profound impact on my headaches.

Migraines are considered a neurovascular disorder. While the chemical mechanisms that cause migraines are still poorly understood, a migraine can roughly be summarized as a headache caused by brain chemistry changes in response to triggers that lead to dilation, constriction, and inflammation of the blood vessels lining the brain. Whatever the cause, what is most relevant to my current situation is that the migraine takes place in the menigines, or layers of membrane that cover the brain.

While my brain itself received a superficial injury at most from my collision with the handrail, there was, undoubtably, some damage to the dura matter. In other words, I received a considerable hit to an already constantly inflamed area. Even in the cases of mild head injuries, such as mine, nerve fibers may be damaged and sometimes deteriorate and cerebral circulation can be slowed or abnormal for months or years afterward. Migraines and other headaches can occur in patients who were previously headache-free, and there is plenty of documentation of exacerbation of existing migraines following mild head injuries. The question remains as to how long-term the increased severity of my symptoms may be and to that there is no clear answer. I expect to be better than I am now (and I have improved, if only marginally, as the initial swelling and bruising that likely occurred has gone down), but there is no question that it is worrisome to cause nerve and circulation damage to a brain that is already suffering from a neurovascular disorder as well as a more generalized nervous hyper-excitability. With my brain existing in a perpetual state of sensory overload from innocuous input, I will not be surprised if it remains sensitive to the effects of genuine damage for a long time to come.