Adjustments (a 2011 personal retrospective)

Happy new year everyone!

So back in the early fall of 2010, I set a goal for myself: I promised myself that I would finish writing my (currently untitled) second book by the end of 2011. It was a new years resolution of sorts, albeit made several months in advance of Janurary 1st. However, sometimes in life, things do not go quite as planned.

When I made that commitment, what I did not know was that the minor “scalp problem” I was dealing with would eventually blossom into my first major full-on psoriasis flare up. At the time, I was unaware that I had the condition. In fact, I did not even know what psoriasis was, although later I would find out that it was the condition that was responsible for all the scabs that covered my grandmother’s legs, which I remember from back when I was a kid. And I would later find out that several other relatives on that side of my family had it too, although they covered it up by always wearing long sleeves and long pants. Even though it ran in the family, no one ever really talked about it (or at least they did not talk about it around me).

In early November 2010, after one of the most restless nights of my life (and I’ve had quite a few of those along the way), as my scalp literally felt like it was on fire, I made an emergency appointment to see my dermatologist. She told me that it was psoriasis. She prescribed me really hardcore topical meds for it, which helped ease the burning, but it did not make my psoriasis go away. In fact, as that month progressed, I noticed that P patches were appearing on other parts of my body.

This time last year (around new years 2011), I was absolutely miserable. Miserable, because my scalp still itched and burned—it was so red, that on Christmas day, my nieces kept asking me how I got sunburned on the top of my head. Miserable, because the scalp psoriasis, in combination with the plaque removal treatments I was prescribed, led to me losing almost half of the hair on my head (I am honestly not exaggerating). Miserable, because the cold and dry winter weather in Philadelphia (where my family lives) exacerbated my condition, and by the time it was over, I had patches (symmetrically, on both sides of the body) on my neck, chest, belly button, knees, shins, and fingers. I was miserable, because the P on my fingers made them so sensitive, I could not type for more than 5 minutes at a time. Miserable, because while paging through a Time Magazine at my Dad’s house, I saw an ad for Enbrel, the immunosuppressant my dermatologist suggested as the next potential step if my topical meds weren’t doing the trick (and they seemingly weren’t). The Enbrel ad was three pages long: One page for all the benefits of the drug, followed by two pages (in small print, of course) for all of the nasty side effects.

So this time last year, upon returning from my family Christmas visit, I decided I was going to take things into my own hands. I joined a psoriasis message board and began to consume all the posts. I did exhaustive internet and PubMed searches (a bonus of being a biologist at a university is that I have access to, and am familiar enough with the bio/medical jargon to understand, all the scientific literature on the subject). I sought out, and followed up on, every clue that I could find that might possibly lead to some way to send my P back into remission.

Over the last year, I cannot tell you how many articles I’ve read about psoriasis and auto-immune conditions; about how the immune system functions, and how it is affected by diet, stress and sleep; about the complex back-and-forth communication that goes on between the brain, the skin, the gut, and its microbial flora. Over the course of the last year, I tried all sorts of potential psoriasis remedies, both scientific and anecdotal: I changed my diet in various ways, took supplements of various sorts, exercised, slept more, took up meditation, took baths in Dead Sea salts and lemon Joy (seriously, some people swear by the lemon Joy), spent time in the sun, tried applying glycerol, oils and various sorts of lotions onto my skin, and so on.

Eventually, I found the right combination that seemed to improve my situation.* By March and April 2011, all of my P patches disappeared except for my scalp, which still persists, but it is not nearly as bad as it was. All my hair grew back. I am still reading, and still experimenting, in the hopes that I can drive my P completely into remission. But for now, it seems that we (aka, my will, my skin, and my immune system) have reached a status quo with regards to the whole P-thing.

So 2011 was a very different year than I initially planned it to be. I made very little progress on book #2. But on the other hand, I did learn more than I ever could have imagined about psoriasis, the immune system, diet, and related topics. And as a bonus, all the extra sleep I got in the first half of 2011 allowed me to really become well-versed at lucid dreaming! But most important of all, I learned a crucial life lesson in 2011, one that led to the title of this post: Adjustments.

So to explain what I mean by “adjustments,” I am going to have to briefly digress into a discussion of baseball (sorry sports haters! but I promise, this will be relatively painless, and well worth your patience).

So baseball happens to be my favorite sport—in fact, it is the only sport that I follow these days. When people ask me (sometimes incredulously!) why I like baseball, I often bring up how nostalgic it is for me. When I was a young child, I wanted to grow up to be a Major League Baseball player (who knows, under different circumstances, I may have turned out to be the first MLB trans woman middle infielder!). I also first decided to change my sex at a little league game, and writing and publicly singing a song about that experience became one of the very first somewhat “out-as-trans” moments in my life.

Aside from nostalgia and the intersection with my trans experiences, there are other things that I like about baseball. I like the strategy, and how there is time between each play to consider what the next best move would be. I like the long history of the game, and how it has become the most diverse sport with regard to ethnicity and the size/shape/ability of players’ bodies. And it is one of the only sports where, no matter how badly you are losing, no matter how late in the game, you can always come back and win (because there are no time limits). All these aspects make the game enjoyable for me. But the thing that I find most amazing about baseball is (as baseball pundits often say) it is “a game of adjustments.”

What does that mean? Well, in pretty much every other sport, if you are a great athlete at your position, and if you have talent, and if you stay healthy, it is almost guaranteed that you will be great every year. But in baseball, you can come into the majors and have one or two great years. However, because it is a game where pitchers face batters one-on-one, over time, people will eventually figure out your vulnerabilities. They will realize that you can’t hit a certain pitch, or they will figure out how to hit your curve ball, or they will notice that you are prone to making some particular mistake, etc. And when they do find out your vulnerability, they will exploit it. Unless, of course, you compensate.

Many players have one or two good years, and then fade away. But the great players (as they say) make adjustments. Once other teams start figuring them out, and once they start slumping, they change their routine. Their batting stance. The way they throw the ball. Perhaps even their entire approach to the game. These are athletes who have played baseball their entire lives, and yet, sometimes they have to start all over from scratch, and learn how to do things in an entirely new way, all in order to compensate for their new situation. Making adjustments is what a baseball player needs to do in order to persevere.

So as I was saying, this time last year, I was in a bad place. I was miserable, not only because of my physical pain, but because at that time I was only able to view my situation in terms of loss—how having P interfered with my life, interfered with my writing, made it difficult for me to do some of the things that I like to do, and so on. But shortly thereafter, it struck me that life (to borrow the baseball saying) “is a game of adjustments.” So instead of seeing P in wholly negative terms, I began viewing it as simply a new life situation that I now needed to adapt to.

Today, as I contemplate the beginning of a new year, a couple thoughts spring into my mind. First, I am grateful for my relatively good health at this moment. But I know that this is something that I cannot take for granted. My P is in remission, but of course, remission means that it could come back at any time. I am at peace with that, because I know that if that does happen, I will simply make the adjustments I need to make.

But in addition to that, when I think about the upcoming year, I realize that I am viewing it in a somewhat novel way, at least for me. I always used to think of my future in a rather linear way. I’d make goals for myself. I would think about where I wanted to be one year from now, in my career, writing, performance, relationships, family, etc. I would think about all the places that I wanted to go, and the things that I wanted to do during that time frame.

But this year, in the wake of what has been a very transformative year for me, when I think about where I will be this time next year, and what all I will accomplish between now and then, I honestly do not know what to expect. I am not making any assumptions about where I will be or what I will be doing. I expect that my life will be somewhat similar to what it is now, but I also expect that a number of unexpected things will enter into my life. Hopefully most of them will be good. But some of them may be bad. And when they happen, rather than viewing them as potential obstacles or obstructions, I will instead see them as new life situations, and I will make the appropriate adjustments. And upon making those adjustments, my life will become different than what it is now. And I am OK with that.

I used to see my life as a linear path, and that perspective led me to view unexpected circumstances as detours or potential dead ends. But now, I see my life as having the potential to veer off in all sorts of directions. And if my life takes an unexpected turn, no worries, that will simply be the new path that I am on.

Having said all that, I am not completely without goals or direction. I am working hard to finish writing book #2 before the end of this year (hopefully sooner!). I suppose you could say that this is my new year’s resolution, in that I am working hard toward that goal. But unlike the previous year, this year, I am well aware that I may have to adjust that plan if my life situation requires it.

-julia

p.s., I promise that book # 2 will not have any baseball in it!

*So some people who read this may have psoriasis or some other auto-immune condition, and may be curious/interested in what precisely helped send my P mostly into remission. At some point, I plan to write about my self-care regime in more detail. But in short, most of the positive changes I made are described in Jack Challem’s book The Inflammation Syndrome. Basically, the book discusses the ways in which the modern Western diet exacerbates inflammation, and based on it, I decided to cut out/cut down certain foods, plus take certain supplements (especially those that adjust the omega 3/6 ratio (btw, GLA is the bomb!)). Also, my P flare up occurred not too long after I was on antibiotics for a month, and disturbances in gut microflora are known to send the immune system into a tizzy. So I’ve found that taking probiotics and other IBS-related remedies have been helpful for me as well.