Long time readers of the Act II Ministries sites will remember that the author suffers from something called Tubular Aggregate Myopathy, TAM, a very rare condition that is only diagnosed in fifty to seventy-five people in the world. I know of three in the US and Canada, although there are probably a few more. These sixty-nanometer tubules (I believe they're made up of proteins and the like, but I'm not sure) collect (or "aggregate") in skeletal muscle tissue, perpendicular to the movement of the muscle, and acts to restrict movement, mostly to the effect that it causes two great problems: pain and fatigue. (There are some other minor symptoms, too.) There are other circumstances that may cause this to happen on a temporary basis for some people, most commonly in pregnant women and severe alcoholics. The fact that I'm no less likely to be the former than the latter tells you how little I drink!
The presence of my TAM is a gift from God, and I've shared my testimony before about how being sick is what brought me to the foot of His Throne. But one of the miracles in my case is that in the supposedly backwards state of Idaho, it took only a year from the beginning of our pursuit of a cause for my symptoms (by the time I knew something was significantly wrong, I was married to my high school sweetheart, the co-founder of Act II) for the St. Luke's network of hospitals to ascertain the cause of my suffering, despite the fact that none of them had ever heard of TAM before! Of the three other people I know of with the disease, they were all several years into the progression before any treatment could be found, so they were all wheelchair bound or worse. My primary TAM doctor (at the University of Utah myopathy clinic) says I'm the only one who can still work. One of the terrible parts of TAM is that the tubules form because of activity - so the more you exercise or move about, the worse they get. So if your natural inclination when you're getting weaker is to work out? You're signing your death warrant. Imagine how fortunate I am to have learned the truth at such an early stage.
In TAM-sufferers, or at least in me, the pain can be dealt with for the most part through a regimen of long-term painkillers which fortunately I'm fairly tolerant of. I take prescription doses of 200 mg of morphine daily, along with 2400 mg of gabapentin, and about 60 mg of oxycodone daily as well for 'breakthrough' pain, meaning when the others don't do the trick. (One of my private off-key jokes is when a student of mine will see me hurting and ask if I want an aspirin. I want to tell them, Oh, honey, what I have in my pocket would probably kill you...)
But there is no medical cure for the fatigue. I'm exhausted when I get out of the shower. I have the most fortunate job I can imagine, supervising the alternative school in my school district - after 29 years of teaching band, the last seven here, my district made a point of taking care of me and finding a position which allows me to still use my educational experience to help struggling students but not have to do anything physically taxing along the way. My assistant does virtually all of the legwork, while I sit at my desk and students come to me as necessary. And yet, by lunch time I'm exhausted.
God knew before I got too sick, before I'd even called to Him for salvation, and most remarkably before I thought my ex-wife was yet capable of caring for our children on a prolonged basis, that I would need to have time away from child caring to survive. I love them with all my heart, but any parent will tell you they are taxing. So He forced my hand into a week-by-week sharing of the children with my ex, strongly against my wishes. But without those breaks when I could recover, I wouldn't have survived this long.
I've had the disease for probably seven years now. While no one knows its cause or cure, and treatment only deals with the symptoms, the idea that the tubules attack severely stressed bodies like pregnant women or severe alcoholics makes me think that the two years between marriages, when I was working eighty hours a week and was a single father of five children, ages three to thirteen, was the time of onset. I have no proof, and as a Christian I believe the cause of onset is the Lord's Will. But that makes the most sense to me, and it fits what I noticed at the time. My recovery from the strain of marching seasons was slower and slower in '09 and 2010, and...well, the rest is for another day.
Like many other long-term illnesses, there are good days and bad days, good weeks and bad weeks. Right now, I'm in a particularly bad week, mostly because one of the medicines I need to be able to fight the dizziness and keep it from making sleep impossible is no longer covered by my medical insurance, so I've been without it for a few days now...and it's catching up with me. So, my priorities are on the bottom tier of Mazlow's Hierarchy - before I can care for others, I need to care for my own basic needs. Seeing straight and overcoming sleep deprivation are two of those. So this blog may go a few days without entries being posted - but no worries. We're just putting our internal house back in order so we can come share God's Word with you later! Thanks for your patience.
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