Entry One – Background Information You’ll Need To Know
It’s 10 a.m.
I’m still sitting in the same recliner I sleep in – my “cocoon”, I call it, after I doctor it with five pillows to encircle my body, angling me into a semi-fetal position that reduces the pain and allows to sleep most productively.
I am about seven weeks into my health-induced retirement from teaching, five years plus seven weeks past my health-induced retirement from my chosen profession: director of bands in the public-school system, most recently here in Jerome, Idaho.
All other things being equal, I should still have six more years until retirement – my “rule of 90” date (under Idaho public service regs) allowing for full retirement coincided with the high school graduation date of my twin daughters, my youngest children, in 2024. When I remarried in 2010, after a whirlwind reuniting with my high school sweetheart, I thought that the timing was going to be perfect – get the children through school and (at least) into college, then relax with my wife and maybe even move into a motor home to follow the kids as they followed their dreams.
But about that time, I started developing a disease called Tubular Aggregate Myopathy, or TAM for short; it’s a malfunction of the STIM-1 gene that causes an overproduction of these sixty-nanometer wide tubules of (mostly) proteins throughout and perpendicular to all of my skeletal muscles.
“That doesn’t sound so bad. How harmful could those little collections be?”
Well, they serve to restrict those muscles in such a way that they cause the user – that’s me, in this case – great pain and severe fatigue. There are some other symptoms, but those are the two biggies.
It wasn’t so bad at first.
I noticed first that I didn’t recover from marching band season as easily one year as I usually did. Then I started getting tired faster, and by 2012, it was severe enough that I started going to the doctor’s office, to start what would eventually turn out to be a year-long search for the cause of my affliction.
Mind you, I didn’t expect it to take a year. At the time, my sweetheart wife was herself suffering dearly from fibromyalgia, among many other difficulties, and I went to her physician with the thought that perhaps I might have the same condition.
No dice. But he did become my point man in the Saint Luke’s medical system (the most extensive in Idaho) as we looked into every possible cause they could think of. I visited physical therapists, cardiologists, neurologists, rheumatologists… My rheumatologist was a gentleman raised in India, who eventually got so frustrated when all the “normal” possibilities turned up empty that (I say this mostly in jest) he dusted off his Big And Ancient Book of Old Indian Blood Tests, which made several phlebotomists cry trying to figure out how to run the tests for him!
Our breakthrough came that winter when, of all people, the man who was the advising physician for my oldest son’s Gifted/Talented program’s health clinic did a quick surgery on me one morning. He extracted a chunk of muscle tissue from my thigh, flash froze it, and sent it by helicopter to the University of Utah, where by chance a certain dye test prompted someone there (whom I would kiss on the lips if I ever found out their identity!) to take a closer look at under the university’s electron microscope.
And there were the telltale tubules.
A quick biographical check told them that I was neither a severe alcoholic (not a chance – I don’t drink) nor pregnant (even less likely!), and then my rheumatologist called me at school with the news.
“Hello?” That distinctive Indian lilt in the voice was unmistakable.
“We’ve found out what you have. Write this down: Tubular Aggregate Myopathy . Okay? All right, now you know as much as we do. Good luck.” <Click.>
Well, not quite.
But it turns out that TAM is so rare that nobody in the St. Luke’s system had ever even heard of it. Only about 50-75 people have this condition, generally men for some reason, generally in our forties, fifties, or sixties. In my reading about other people’s histories, and in talking with the one other person I can find on line with the disease (in Ontario, Canada), it seems that to have discovered my TAM diagnosis within only a year of searching is something like a record. Certainly, it was a shorter search than any of the people I’ve learned about.
And that turns out to be critically important, because of how TAM works. The tubules never go away – they just keep accumulating, and they continue to increase in their strength. In fact, the more one uses one’s muscles (and everyone does every day, of course), the more tubules are produced. So if it takes, for sake of argument, three years to discover that you’re not supposed to still be exercising to stay in shape to “ward off this fatigue”, as every reasonable doctor would generally recommend to every reasonable patient, you’ve spent two more years than I did accelerating the progress of your disease, probably into wheelchair proportions.
As for me? I learned about my TAM quickly enough that while I’ve used a wheelchair on many occasions when necessary, for the most part I’m still walking, driving, and doing everything I used to do.
Just…. Just not for very long any more, that’s all.
I’ve slowly deteriorated since 2010, then, having given up the delusion that I could keep up with the 80-hour weeks of a band director by retiring from it in 2013, and accepting the school district’s gracious offer to head their one-room alternative high school instead – a much more sedentary job.
At first, it felt like a vacation – I even bought some Hawaiian shirts to wear there as a personal inside joke to that effect. But as I continued to get weaker, and as my fuel tank grew smaller, it stopped being such a sinecure. Two years in, I again thought I’d have to give up the profession because of TAM. But to my surprise, my superintendent found an amazing assistant for me within his own church – a fellow Christian, an amazing woman who had already retired from an HR career and whose primary duty, she told me, was to take on as many of the physical duties of the job as possible, and thus extend my teaching career for as long as possible.
Have I mentioned how much I love my school district? Can I mention it again?
But finally this spring, the spring of 2018, it becme too much. Even given the least taxing position imaginable in any school district, I’m still unable to stay alert for the seven consecutive hours of a typical school day. All I really had to do, thanks to my paraprofessional aide, was sit at my desk, doing little to nothing of physical impact, help with questions occasionally when a student brought it to my desk, and be the Gandolf of the bridge when trouble arose. And yet – and yet – I couldn’t make it through the day any more, triggering my necessary decision to retire.
Which brings us back to today.
This is my third marriage, through no intent of mine except to start them. Wife number one, the mother of all six of my children, lives across town from me and is (of course) who I share custody with. (A long set of stories go with our marriage and her decision to leave us, which I’ll undoubtedly share someday when she gives me reason to do so through her current choices. Wife number two, my aforementioned high school sweetheart, eventually passed away from those multiple diseases, just before Christmas 2014. But four years of marriage to her was better than none, although her death is still my biggest test for Romans 8:28 at the moment.
My new bride and I got engaged last Christmas (2017), and we intended to have a wedding in June this year (2018). Then we started working on how the insurance and other legalities would have to change with the marriage, and where we could find a house available within this school district to house all of our kids, and my introversion started increasing as I thought about the potential for large numbers at the wedding… so we eloped during spring break in March. (That is to say, we called our pastor, asked him to meet us at the church on Friday afternoon, had a couple of family members there, and get married. Seven minutes. Twenty people total in the wedding “party”, audience and pastor included. Perfect.)
God, however, as He has done so many times in our lives, had His own timetable He was working on, and it still said June. So while we lived in separate houses for April and May as a married couple, it never really felt much different yet than dating. Then, on June first, the perfect house in the right neighborhood showed up. We contacted the realtor the next morning (a Saturday), he showed us the house Monday morning, and by the evening we had the keys in our hands. By the time we were ready to physically move in, we’d reached the two-week vacation people that I get with my children’s mother every summer (the rest of the year, we alternate a week at a time), so my kids got two full weeks to move their stuff into the new house and prep it the way they wanted it, and so forth. (Just as He had planned, I’m sure.)
My new bride is the perfect partner for the current, sedentary version of me. We met two years ago online and fell in love very quickly. Whenever I get depressed about my inability to be or do what I could once be or do, she’ll remind me that she never even knew that version of me: she’s only been in love with this version of me. It’s even possible that we wouldn’t have even been compatible twelve years ago (not that either of us were single at that time, anyway!). But we certainly are in 2018, and that’s the only thing that matters.
She’s still gainfully employed, however, despite being within a year of my age (or, as most people our age still are, depending on your POV), and she’s reached an enviable position in her field of choice. So, as with most weekday mornings, she’s left by now to go work in the slightly larger city of Twin Falls, which lies on the other side of the same Snake River Canyon that Evel Knievel attempted to sky-cycle over in 1974, and which Eddie Braun successfully flew over last summer.
Which leaves me alone in this still unfamiliar house.
It’s now 11 a.m., and it’s time that I finally venture out of my cocoon for the first time today. (Almost true – I did go to the toilet at about five this morning; while alert-ish, I took the waking opportunity to gulp down about half of the forty-plus pills I consume daily in order to keep my pain, spasms, introversive traits, and other conditions under control. (The exact number of pills I take varies daily, depending on how bad the pain gets. And the earlier I can sneak that first dose in, the better the chances of keeping the pain under control in the morning when I do wake up for good. The morning is usually the most productive part of the day for me – scheduling plans past mid-afternoon is usually unconstructive at best.)
Today, I seem to be the only one in the house that my new bride and I just started renting together last month. My four youngest children still reside with me half the time – joint custody – while my bride’s youngest girls live here full time in theory, although being age 18 and having both boyfriends and jobs means that we now joke that they live here even less that my kids do.
Since I’m becoming more and more introverted and sedentary, being alone isn’t that big of a deal. But…well, in my next entry, I’ll relate to you what it actually feels like to me here.
(And don’t panic – most of my entries will be FAR shorter than this one.)