15-Month Status Report

Thursday marked my 15-month cranioversary. We had all my students over for a pizza dinner that night and I had all-day meetings before that, so I never got around to finishing this status report to post it on the day itself. Friday brought meetings in Chicago, so here we are on Saturday, finally finishing Thursday’s post.

Having been a high-energy person all my life, the limits of my stamina are frustrating and, no matter how well I plan, I keep running headlong into the boundaries. Since Thursday’s meeting was with one other person, all in the same room (and one I’ve spent time in, to boot), I figured the day ought to work. It did, right up until I completely lost my ability to summon words around 3:30. I finally gave up at 4, and went home to lie down for a bit. It was a surrender, but there wasn’t much option, so I summoned as much grace as possible, though it was of course embarrassing to say “really sorry, I need to go now” when there was still more to be done and the other person had planned to work all day. A nap of twenty minutes brought back just enough steam to keep going through the gathering for the students, and that’s an improvement over the hour it used to take. I was pretty depleted, though, so when I ran out of gas on Friday (and was in Chicago so couldn’t lie down for a bit), it was more serious. I fell asleep early and won’t attempt much this weekend. I’m striving for perspective, as I know full well that even this that frustrates me so much is an improvement--a huge one--over one month, six months and ten months ago. Still, I don’t much like it. I know that these are the good problems to have and adjusting my perspective is a work in progress, so here goes.

From a wide-angle lens, 15 months out from surgery brings the first dawning hope that there’s a chance that some semblance of a regular life is within grasp. The last month has seen a consolidation of gains and a renewed hope that the last gaps will close, or at least come closer to closing than has felt possible for so much of the recent slog.

From the top down:

Scalp: still odd, both numb and hypersensitive in the core area. When (if?) that goes, we’ll know this chapter is closing. Not there yet.

Skull: permanently bumpy and re-contoured. All covered by hair, so not visible, but an odd feature to explore through touch.

Neck and shoulders: much progress, and still not quite right. The most recent round of physical therapy I sought out with your encouragement has made a huge difference and I’m so glad I pursued it--and grateful for your notes and nudges. The most interesting thing now is how much difference it makes which direction my hand faces in various motions: positioning my hand so the thumb is down leads to more fluid shoulder movement than when it’s in any other orientation. Thumb up is better than sideways. This applies to all motions, all the time, except for getting my arm over my head. That’s a trick no matter which way the hand is positioned.

Balance: Improving, still not good. I must stabilize myself on stairs and I avoid bending over. When that’s not possible, I think a lot before and during the process. Certain settings still lead to vertigo. Visual overload leads to serious problems. Fatigue seriously degrades my balance, and more than once, when tired, I’ve fallen down. I’m getting really good at it. And laughing about it. One of the exercises I’ve been doing (well, trying to do) involves standing on one leg and trying to move my arm from over and behind my head to below my waist. We could probably sell tickets to this one as a comedy. Standing on one foot is challenging enough for me, but add in the attempt at the motion and let’s just charitably say that I try really hard. I think how lovely it will be not to notice or think about the process of bending over in the future.

Cortisol levels: we’ll know more next week. Morning blood test Monday, appointment with Dr. Thoughtful on Wednesday. The plan is to be off the steroids completely by Jan 1. We’ll see.

Cognition: better. The ideas keep coming (color that a major relief) and my thinking seems clearer. Again, my stamina is limited, so that’s frustrating, but it does seem to be improving. Still cannot decode the comics and still cannot reliably read fiction. I most fervently hope for improvement here. The in-and-out nature of the ability to follow a narrative arc seems positive in that at least it clicks in every now and then, rather than being totally AWOL. Michael says that he finds fewer problems in my writing and that it’s less frequent that I garble things in speech.

Stamina: improving, but still less than to be hoped for. The gains have been large and if this is all I get, I can make this work. I hope for more.

Miscellaneous: strange things come and go. Every now and then, everything numbs up. That seems to be some kind of misfire, and is associated with fatigue. The strange hormonal stuff seems to be settling down (finally), along with all the other pecularities.

I’m now bored with thinking about the deficits, so even though the list is probably incomplete, that’s all she wrote for today.

This weekend is rest, cleaning up my desk (that will be an adventure), revisiting Christmas lists and planning for the week. Shea comes home Friday, and we have our fingers crossed that Kearney and Brad will be able to come down Saturday for our ritual tree-trimming event. Shea’s been making lists of the baking she wants to do this year, which is of course everything we’ve ever made for any holiday, and double batches would be best. Shea is a firm believer in more is more. I picked out a holiday project that I hope will work for all of us this year and will try a dry run this afternoon with a friend, if energy permits. We’ll work in front of the fireplace, looking at Shea’s enormous tree (story tomorrow) and think holiday thoughts. Maybe we’ll even play Christmas music. Warm wishes to all.