Trail’s End/Journey’s Beginning?

So, we came back the next year, but it did not go well. I did not make it far this time, and never completed the AT. Still really important because it was a pivotal point in figuring out what would be my life. When you are on the trail, you spend a lot of time enjoying the sound of the wilderness, but you also talk a lot. A major topic was a scary development going on in my family. I had heard that my cousin Vicki’s kid Zach was sick, real sick in fact. I don’t remember having a lot of details, but the parts that I had heard were that somehow, a perfectly normal first grader, or thereabouts, was losing it. He could not draw like he used to, he was having vision trouble, I think, and was having a general loss of coordination. I was pretty sure that he carried a diagnosis, but I had no idea what it was.

There was some talk about the need for all of the males in the family to get tested. That was about the extent of what I knew. I had not given it much thought at this point. As far as I knew, I was still as invincible as I had always been. Bad things stayed away from me. I was average, I knew it, but that was fine. No better, no worse. I was well. A great wife, a new project house to work on, a good job and a couple of cats. And here I was on the Appalachian Trail. So, of course I scoffed at olde Wayne when he tried to loop together my consistent falling with Zach’s issues. Heck, I was 31 and Zach was maybe 6. How could it be the same?

So, it turns out that olde Wayne and Bob Delgado were onto something.

Still, it is hard to change my mind when it is fully made up. So as a result, I got dismissive. Vicki’s kid was sick, and that was a bad thing, but I just had a cold and ill-fitting boots. Certainly, yes, that was my problem.

I did not perform as I had expected, and the trip ended early. I was left to contemplate things. I eventually did place a call to mom to get the deal on Zach. At some point (no e-mail at this point, so it sometimes took a while to get the data transfer), I learned that Zach suffered from a very rare, deadly, disease: X- linked adrenoleukodystrophy (X-ALD: X-linked because the genetic mutation is on the X-chromosome, adrenal because it often leads to loss of adrenal function and leukodystrophy, which describes a group of diseases that affect the growth or maintenance of myelin). That was a mouthful, and I had not a single idea what it was, or might be.

Somewhere along the line I also heard that it somehow involved fatty acids, and the prognosis did not look good for Zach. Now remember, this was pre-internet, there was not a lot of easy information. At that point, I knew nothing about X-ALD and had no idea how to find out. Rather than dig through the Index Medicus. I thought of my good friend Betty Kuzmik who had spent many years nursing at a lipid clinic at the National Institute of Health (NIH). I had been told that this disease had to do with fatty acids, and fatty acids are like lipids, right? Made sense to me. Maybe she could help.

Published by bradleygillespie

I am just a guy with a disease called adrenomyeloneuropathy. I want other guys with the disease to see the good parts of disability. Not the gloom. Not the doom. Make sense?

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