Friday, December 4, 2020

The New Normal

 For a person who has had a blog for well over a decade - and who has produced over 2400 posts - I'm also sometimes quite guilty of not talking about what's really going on in my life. I think I hide behind pictures from overseas or funny CFL stories or the more thematic streams like the Proust or music of faith-based posts; although, to be fair, the two years with Proust actually forced me to deal with a lot of my own demons and painful memories. With that in mind, I guess I should devote some time to my current physical miseries (yes, 2020 just keeps on giving), if for no other reason than to capture how I feel right now for later reflection. For some time now I've been having trouble with my legs, and, well, I do have real problems with arthritis in my knees and hips (it used to just be long-suffering left hip, but apparently the rest of my lower half began to feel left out) and maybe a torn meniscus in my right knee. I'm slowly, and I mean slowly, getting them sorted out; my surgeon, or at least his PA, doesn't seem particularly interested in doing much more than giving me cortisone shots. To be fair, all of this is made much more difficult by the pandemic and the recent cyber attack on the UVM hospital (I ended up driving an hour east of Burlington to get an MRI on my knee at 7:30 at night in Berlin in the central part of the state, up the hill from my old stomping grounds in Barre). However, I think the pain in my hip and knees has masked more substantial problems. This has been a slow progression/regression, but it has definitely picked up steam during the last six months. Halfway through the fall semester I sat down and had a heart to heart with myself and ordered a cane. Part of it related to the unsteadiness of my wheels, especially once the injury to my right knee (my good knee) became acute, but also related to a more precarious sense of balance.

It all came to a head one day when I was meeting with my physical therapist, who was helping me out with my left hip (and, thankfully, the combination of stretching and strengthening has helped quite a bit). Anyway, I was telling him about my symptoms: pain and weakness and a little numbness and, for lack of a better description, a feeling that my legs were "heavy" - and my balance being off. He told me that he had noticed me tipping a bit, and had me do a very basic balancing exercise. The results were somewhere between amusing and sobering. I'd close my eyes and would lose by balance almost immediately. After the session was over I called my physician right away and they were able to get me in, virtually, the next day. My physician, Patrick, who I like a lot and think the world of (for some reason he thinks I've very funny, but maybe he just likes looking up bizarre places on the globe to order shots for me) took it seriously and ordered an EMG, once again, not in Burlington, but instead I now drove an hour south of Burlington down to Middlebury. Patrick was very honest with me and told me that the EMG was "unpleasant" and that they might give me some valium first, which led me to dragooning my excellent friend Steve to come along for the trip just in case. My good friend Cyndi told me not to think about the procedure or to do any research before hand. I shook my head yes, and then, of course, started Googling EMGs five minutes later. You test for all sorts of things with an EMG, none of them sounding particularly inspiring: amyotrophic literal sclerosis (ALS), carpal tunnel syndrome, cervical spondylosis, Guillain-Barre syndrome, Lambert-Eaton syndrome, muscular dystrophy, myasthenia gravis, etc. Naturally, this hasn't put me in the best of moods. Still, I liked the doctor who performed the test quite a bit, and he was a bit of a mad scientist (which endeared him to me all the more). When you start off an examination with questions like, "Have you ever had leprosy?" or "Have you ever been exposed to mercury?" you know you're in for a good time. However, in answering his questions I mentioned all the places I've travelled to in the last year, and thus we discovered a shared love of Africa. When he wasn't busy torturing me we'd talk about Africa. Altogether we spent almost an hour and a half examining me; truthfully, when was the last time a doctor spent an hour and a half with you? And, yes, Patrick was right, the EMG was pretty unpleasant. Initially it was a series of shocks on the skin, and as he ratcheted up the voltage it sometimes felt like lightning was running along my skin or my legs would start kicking (sort of like the frog experiment you'd in in a biology lab in college). I'd convinced myself that it was actually more interesting than truly painful, but then he said it was time to whip out the needles . . .

Yeah, so the needles weren't a lot of fun. They were pretty fine, essentially acupuncture needles. So, sliding them in weren't too horrible, generally. However, once they were in the doctor would then sometimes pull them part-way out and then reposition them, going deeper into the muscle; he was trying to get the best possible reading, as all the information was going into his laptop. We'd be happily talking about Ghana or Zanzibar when he'd say something like, "OK, let's not talk for a bit because I'm working through some stuff," and then he'd do math in his head and enter information into the computer. There was also a bit of a charge, and then he'd often ask me to push back against him while the needle was deeply embedded in a muscle to get a response.  It went up and down my left leg and then my spine and then a bit of my right leg. Truthfully, it wasn't horrible, but it certainly wasn't a lot of fun. I had told him about my friend Cyndi's advice and all the horrible things like ALS it could reveal. When he finished he smiled and said, "First off, you don't have ALS." So, that's great news, although when you're having a meeting where that qualifies as great news then things are definitely up in the air. Where are we? I don't think we know yet. I have muscle damage in both legs, oddly in the exact same place; the doctor pointed out that it's incredibly unlikely that I would have damaged myself separately at exactly the same place in both legs, so this leads him to examine the spine and we have another MRI coming up. In addition, I have polyneuropathy, essentially a problem with more than one set of nerves. Again, going back to a conversation with my PT, it's like (and I'm describing this clumsily) there's almost a delay in information travelling to me and a delay in it returning, hence my balance issues. He described my nerves as "sick," which, of course, is different than damaged. Oddly, I think sick is better, although I guess sick could also include damaged. We're going to run a ton of blood work to see if this can be narrowed down; as my doctor told me, there are about a thousand things that could cause polyneuropathy. I really liked the fact that he gave me information but wouldn't spontaneously hypothesize at that point. Rather, he said he wanted to brood over it more. I have a physical scheduled (an actual face to face physical, rare in these COVID days) with my regular doctor next week, so maybe I'll know a little more (although I doubt I'll know much more; rather, I think I'll just know more about what tests we'll be running).

Where does this leave me?  Who knows? I like my new doctor a lot, and I suspect I'll be seeing him again. He seems bright as hell and definitely on top of things and that gives me a lot of confidence moving forward. Ignoring the obvious million shades of gray for the moment, I've been thinking of it this way: there are obviously three general destinations. First off, the regression continues and this gets as bad in the next six months as it's gotten during the last six months. Not surprisingly, that's scary, because he has grown noticeably worse. Secondly, we sort this out and either address the problem effectively - or we figure out it's a temporary situation that lasts a year or so - and within the foreseeable future I'm close to where I was before this all began; still struggling with structural problems with my hip and knees, but more manageable. Thirdly, this becomes the new normal as we find a way to halt the regression. So this all becomes about managing the new normal. I can still teach and volunteer at the Food Shelf and go to the gym, but I simply have more limitations. Can I still lead student trips overseas? Probably, although I couldn't do everything, certainly not on a trip like Jordan which requires all sorts of clambering up mountains. I'd have to pick my spots. For example, I could make my way down the siq at Petra and walk to the temples, but I certainly couldn't climb all the way up to the Monastery. Maybe I'll have to always bring two other faculty members in case I break down. Obviously, if things continue to slide in the wrong direction then I'd have to forego the trips, although maybe I could still make a personal trip with the appropriate planning.

So this is where we are. I'm a little beat up emotionally and physically, but still pushing ahead. 

My good friend Mike Kelly thinks my cane is very pimp-worthy, so I guess I have that going for me. I figured if I was going to have to use a cane occasionally I'd at least get one that had more character than one of those cheap ones you can buy at the drug store.



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