The saddest repeated sight of my youth was seeing young apple trees die. There were originally 8 on my property; on my parents' property. After a rare New Jerseyan hurricane claimed three of them we tried to plant new, young saplings. Splints to fight the gravity, fences to fight the deer, but the death of them was (that summer, and the two after) from a much more sinister foe: the gypsie moth.

Gypsie moths feed on the leaves of a tree. Fuzzy and camoflauged the caterpillars set upon trees of all sizes and eat sparingly from May to late June; they are barely noticed at this point. After the moths mate in July they lay their eggs in spidery nests which are notoriously visible and notoriously hard to erradicate. After the eggs hatch the larvae swarm the tree. If their appetite is satiated with less than 50% of the foliage the tree can handle up to three years of the abuse and still have enough water and food reserves to, as they say, keep on keeping on. More than 50% defoliation for even one year can be devastating to the survival of the tree. A younger tree, without years of food reserves and root structure to pull up extra water, succumbs quietly to this infestation. To these young trees, the silvery tents of the gypsy moth are a harbringer of things to come.

On the good days, reflecting back, I like to imagine this is what is happening inside my mind. With the disease choking synapsi and interrupting the least nimble of neurons.

They report that 1 out of 3 people know somebody with Alzheimer's Disease and that by the year 2050 there could be 16 million Americans who fall victim to the illness. Nearly half of all people over age 85 are affected by the disease, as are 10% of people 65 - 85. Early onset, younger than 50 years old, is very rare and requires heriditary conditions for the illness to show up in one's genome. Younger than 30 is virtually unheard of.

Virtually.

There are good days... here and there and for hours in-between. It's a blessing in some regards; last summer I made a distillation column one weekend and left notes on a simple recipe. When I swam all the way back to the surface five weeks later there was a glass waiting. So that was the good. The bad was the five weeks of lost memories, the five weeks of being sat in the yard on a sunny day, or being sat on the porch in a rainstorm, or being... the five weeks' worth of lost memories of being hurt most of all.

It isn't like a broken leg, that your cure with bedrest, or a cold that you cure with a pill. When your mind becomes victim to an ailment there's no fighting it, because the very tool to fight is corrupted. You just take your punches and wait for the storm to clear. Early on the good times were good times, and once ever six months I'd maybe miss out on a weekend. Then the period became smaller and the intensity increased to the point where it's a weekend here and there I get, and it scares me that it always feels like borrowed time.

This note thusfar has taken two days to compose.

I used to be afraid of heights, later I would climbed a tree higher than my house. I used to have dreams where I would trip and fall forever, and after decades learned how to fly in my dreams. I used to be afraid of the dark; one night I let the fear consume me, wash through my being, and created the foulest imagination to scare me up half the night. I never feared the unknown dark again. I used to be afraid of drowning by a foreign body of water, with no land in sight.

I'm still afraid of drowning... but now I fear it'll be by land.




Fearquest

A gluten allergy isn't a particularly interesting disease; it doesn't involve quietly poignant suffering, or succumbing to laudanum abuse, or secret, painful affairs with compassionate nurses. Heck, it's not even a disease as much as a genetic defect that redirects gluten away from digestion and into irritation and inflammation. It hurts in small and stupid ways during those splendid teenage school years, making you unable to go out to a burger joint with friends, lest they see you remove the bread and consume only the innards - "weirdo" branding awaits. Not a huge thing in itself, but just another stupid thing to deal with, and one you can't help. Pizzas, sandwiches, ditto. Camping, hiking, , flying (noodles in your airline dinner? too bad), vacations become a little more of a chore, as you can't just grab a sandwich or a loaf of bread and head out, or rely on local fast food joints to feed you - this is especially true in bread-heavy countries, or in countries with a poorly-, or un-developed health food awareness. Until the mid 90s, that was most countries ...

I assume in places where diagnosis and dietary alternatives aren't available, people still die from this thing. Like leprosy, I'm sure it's neither quiet nor poignant.

One of the more insidious aspects of this is that I never know whether my itch is just something random, an insect bite, dry skin, or a DH symptom. When I was 14 or so and living in the Evil Insect Capital of the United States .... well, imagine falling asleep in your upstairs (2nd floor where ants/roaches/mosquitos/snakes/whatever rarely get to) and feeling a small itch on your leg. You remember that bite of pizza you had yesterday regretfully and try not to scratch, knowing that the itch will probably get worse before you can drop off to sleep. You sigh, as the itch gets worse and worse, the burning slowly going up your leg until the whole thing feels like a mass of itchy hell. In rage you throw off the covers to start a massive scratching marathon and behold ... a swarm of fire ants on your leg. I think the reaction was shriek, leap, curse, run away to shower and refuse to come back to bed for an hour. Good times.

My parents first noticed that something wasn't right when I was a bit under ten years old - memory is a bit hazy now. A few things were tried, including testing a theory that the sun had a curative effect on the symptoms. An ultraviolet lamp was brought into play, and made me instantly break out in a rash ten times as strong as without - we're still not sure why that was. I suspect now that all that the sun (i.e. being outside and playing) did was to take my mind off of the itching, as well as keep the skin dry and aired out. I'm still a big fan of keeping things dry and aired out.

After that I had some fun staying at a hospital for a couple of weeks for analysis. From what I remember, analysis consisted of getting painted with iodine, having to strip in front of girls (well it was reciprocal but still awkward at 8 (?) years old), boredom, and inability to sleep at night due to homesickness. What I'm saying is, it sucked. Still, at the end of my stay at that luxury establishment my ailment was decoded and I was put on a dapsone presciption and a strict gluten-free regimen.

That also sucked. At the time, Poland didn't really have much in the way of awareness at all, and it is a very bread-heavy country. Yummy, freshly baked each morning, crackly, firm and crisp outside skin and steaming, moist and dense fibrous goodness inside bread-heavy country, with just a bit of butter and a dash of salt - there's little better on this Earth. No plastic-wrapped, mass-produced fluffy crap in Poland, no sir. Now we have that too, of course; some things really were better when Commies were in charge.

Anyway, the one thing that was not better was gluten-free products. As in, there weren't any - so I used rice cracker "bread", a sort of weird, slightly more dense take on the round rice cakes easily obtainable in the US. As expected, this is not the right sort of substance for a proper sammich experience. Oatmeal was out, kasza manna was out, waffles were out, ice cream (in a cone) was out, the many types of noodles were out ... it was either screaming rage or dull resignation, and I'm sure I had my share of both during those times.

Even the medication was a pain in the ass! My dosage was 1/4th of a pill, which required careful cutting of a hard small thing into even parts, searching for the damn thing as it zipped away at high-speed from the force of the knife pressing on it, then putting it in a huge styrofoam (well, wafer but it tasted like styrofoam) container about 20 times the fragment's size (to dull the edges of the cut pill I guess!!?) and attempting to choke it down. To this day I would like to find the genius responsible for that invention and make him swallow each and every one of those ridiculous inflated capsules. Even empty, it would be entertaining.

Things never really got better and were made worse by the many world-crossing relocations - telling new sets of people about my whack allergy. Of interest is that upon arrival in the US, the doctor here octupled (yes, 8x, from 1/4th to 2 whole pills) my dosage, for reasons I still don't fully understand - I believe the explanation was "That's the correct dosage". Doctors, sheesh. At least I didn't have to choke on huge wafer pill bombs anymore.

At some point in high school the stress of being "differently fooded" faded away under the stress of midterms, and by the time I got to college it was simply routine. Other factors contributed to it of course, including a growing presence of easily available gluten-free breads (attractive cardboard taste and texture! but infinitely easier to deal with than rice cakes), exposure to other ethnic foods (lentil bread, rice wrappers, corn tortillas), and the relative freedom of choice regarding feeding myself - Austin certainly wasn't lacking in that area. I had to educate myself about food though - at first I lived on gluten-free sandwiches for about a year, and never went out. So many opportunities missed.... but I rarely passed up an opportunity to try a new beer, so the dapsone was doing the job of suppressing my symptoms just fine in that regard.

Anyway, the past years I've been just plodding along, with one bright spot being spending some time in England and enjoying their hook-up with a French gluten-free shop that made lovely and highly edible baguettes. Another one was a widespread availability of a Kinnickinnick (Canadian brand) invention of dare I say, flavourful bread (when toasted). I recommend it to any celiacs without hesitation as probably the best solution to The Cardboard Bread Problem*. The past few years my doctor has been trying to get me to cutdown on dapsone dosage, as it is not without its own side effects - hemolysis, anemia and possible liver damage are a risk. I've proven stubborn about it due to phantom symptoms, and inability to differentiate between the real and the incidental rashes. Eventually he made it inconvenient for me, cutting down my prescription to a rate where I would have to obtain a refill every week or so. It was quite clever and it worked as I have extended my ration through self-dosage adjustment - I'm currently down to a pill every few days, and I rarely keep track of how many the "few" are.

And here comes the point of this lengthy telling; I have recently started experimenting with gluten-containing food. I have under my belt a camping trip with a half a loaf of bread consumed in a weekend; couple of pizzas consumed on two separate occasions; a wondrous bready invention called a hot panini just this past friday. Each occasion has been separated by about a week of gluten-free diet, and each one has been consequence free.

By all accounts one doesn't get over DH; but maybe, just maybe it is possible to build up some tolerance to gluten over time. Alternately, I'm burning up my stored dapsone supplies and I'll explode into a messy relapse any second. Either way, I'll be going to see my doctor soon about this development, but in the meantime I believe I'll have a few more hot paninis. There's no time like the present!

*Gluten is sticky, gooey and wet, you see. It's what gives bread products their cohesiveness; without it, things get crumbly and dry. Xanthan gum is used a s a replacement, but it's not a very good one - it provides the stickiness but not the moist gooeyness that you can easily see by tearing away a chunk of rustic italian, baguette or ciabatta. Combine that with lack of texture and flavour that comes from wheat or rye and you end up with a perfect simulation of cardboard.

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