Diagnosis

You will notice, in most if not all of these posts, that phrases along the lines of "I don't remember" crop up quite frequently.  There are two reasons for this.  One is that I am basing what I write here purely on my own memories, and not doing any research that involves other people (such as my parents, who I'm sure remember more, or digging up medical history earlier than what's readily available online).

The other is that, well, I don't remember.  There are a lot of things I don't remember.

Some of that is time; it's been almost twenty years since I graduated high school, so it's not like these things happened yesterday.  But then again, a lot of people seem to remember a lot more about junior high and high school than I do.

Some of that, I'm sure, is my brain blocking out painful memories.  Because nothing about my medical adventures were particularly fun (except maybe the oreo cookies and milk that I got to have as dessert in the Children's Hospital).  And even when I wasn't actively dealing with medical issues, navigating junior high and high school while having ongoing medical crises that the doctors couldn't figure out?  The whole period of time was probably traumatic at best, and I can imagine my brain doing this whenever I try to think back on it.

And I'm sure there was also a lot of denial or lack of understanding at the time.  In some sense, wacky medical stuff was perfectly normal for me.  I didn't have any experience of doing junior high without it.  And in some sense, I didn't grok the full implications of what was going on.  And probably my brain was already doing the nopetopus dance about some of it.

So I apologise for the holes, and for the vagueness, and for any inaccuracies there might be.  Soon I will go back to the format of random memory fragments, another jigsaw puzzle for another era of my life.  But for now, I need to finish the wacky medical hijinks, or at least the diagnosis part, because that's sort of important.

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I can't quite remember (there's that phrase again!) exactly why we ended up going to Mayo Clinic.  I'm sure it was medical weirdness, but I can't quite remember.  I know at some point, subsequent to the hip release surgery, my left hip contracted back up again.  I know at some point it locked permanently in that position -- the one that sometimes shows up in posed photographs, where the person's weight is on one leg and their other leg is canted up and forwards with the foot on tiptoe -- because I remember working out a way to balance on my right leg and bend over, left leg extending behind me like a lever, so that I could still reach the floor, and I remember thinking "if this is as bad as it gets, it's not so bad, I can manage this fine."

(I was an optimistic little kid about this whole thing.  There was one time, I think in high school, that a teacher came up to me with tears in her eyes about how inspirational I was for what I was going through and for always being so cheerful about it all.  I felt awkward and embarrassed and didn't know what to say, in no large part because I wasn't choosing to be cheerful, nor was it a mask I was putting on for the benefit of other people; that's just how I was, how I felt.)

I know at some point, I started developing inexplicable swellings, mostly on my back and neck, hot and tight and painful and without obvious cause, that would then disappear with just as little cause.  I know at some point my spine and neck started stiffening up, so that it was harder for me to turn my head or raise it or exert the flexibility that vertebrae normally have.

I don't know which out of all these things happened before Mayo Clinic and which happened after.  I just know that there was some reason why the doctors said, essentially, "There is something weird going on here and we can't figure it out."

Mayo Clinic is where -- three or so years after the first contracture that started the whole process, after all the tests and MRIs and cat scans, after the biopsy to see what kind of cancer I had and the surgery and chemotherapy to treat what they thought it was -- they finally eventually were able to diagnose me correctly.

And it wasn't cancer at all.

It was something very different: Fibrodysplasia Ossificans Progressiva.