Accepting limitations has never been one of my strengths. Here I am stuck wanting and needing to do things and not being able to for multiple reasons. And this isn’t different than any other time in my life, but like ever before, it seems like such a cop out. It’s like I can feel my potential and opportunities slipping away while I kill time waiting for conditions to be better.
And given my nature to be introspective, I kind of feel the need to write about it, but I also feel that my writing has become self-indulgent and melancholy. So I avoid writing, or at least writing and sharing. And I found out long ago that writing and then archiving/deleting isn’t as helpful as sharing. It’s almost like I need to let my ideas go out into the world instead of into a cage to experience any kind of growth.
I’ve probably mentioned this before, but my friend Anita recommended a book to me called, “Where’d You Go Bernadette?” by Maria Semple (and soon to be a feature film). In the book Bernadette is a creative person who suffers when she stifles her creativity. I enjoyed it very much and I can see parallels in some of my experiences. Right now I really want to make something, and I have several ideas for projects, as well as a need to get some pottery made for the post-Thanksgiving sale I do every November. My studio is in a shambles, though, and 95° in the studio is too oppressive to be doing anything. I have some slabs rolled out for carving, but they’re quickly passing the point where they’re too dry for what I want, and I just haven’t been in the frame of mind to babysit them.
In the meantime I’ve been listening to Adam Savage’s podcast on youtube in the evenings when I’m wasting time. It’s called “Still Untitled” and is one of the most interesting podcasts I’ve found. He inspires me in a lot of ways, and I just watched one episode where they spent most of the podcast talking about the enjoyment they get from watching other makers videos on youtube. I felt inspired that I ought to be putting more video out for some of the stuff I do, but quickly began to shoot myself down. I don’t have any real special knowledge, or insight, but I have worked pretty hard to develop a certain level of skill that is not inconsequential. The idea of making videos just seems self indulgent, or at least it seems sort of meta self indulgent as I don’t really seek any sort of fame or adulation. I just agree with Adam in that it’s fun to watch. I’ve played with making pottery videos before putting a couple of live things up on Facebook for fun, and I’ve been told by people that I ought to produce something a little more polished and less ephemeral than a Facebook post.
But it’s not just the pottery, I kinda-sorta document lots of stuff I do, but only halfheartedly, so I end up with lots of pictures in a folder. And necessarily, some of the stuff I end up documenting, more in writing than anything else, is about the things that I go through in trying to maintain a somewhat corporeal existence. The whole convergence in this particular rambling train of thought brings me to my most recent health development. It looks like the reason, at least in part, that I’ve felt pretty crappy these last few years is that I’ve been ignorantly trying to deal with symptoms of Multiple Sclerosis.
I got the diagnosis when my physical therapist sent me in for a MRI to look at the arterial blood flow to my brain because she thought that my weird dizziness might be restricted blood flow. The results came back negative on any blood flow problems, but positive for signs of a demyelinating disease, most likely MS. Since then I’ve had a lot of tests, including a spinal tap (surprisingly easy, and now I go to 11). I guess it’s going to take some time to figure out how I’m affected by what’s going on, but it’s already starting to answer a lot of questions about things, some of them going back quite awhile. Although there is some confusion for me in that if this has been a long term thing how was I in a state of remission enough when I was having the scans 5-10 years ago when I had cancer that it didn’t show up on my scans then? I guess I’ve always been lucky.
As is my nature, I guess, I’ve been trying to keep track of the day-to-day issues that might be related to MS, just to get a baseline. I’ve tried out a couple of mobile device apps, but haven’t found one I’ve liked yet. I also have given a shot to doing it somewhat tediously though Evernote, but that is seeming less than optimal after two weeks. I almost considered just carrying around a small log book, which has some classical romantic interest for me, but I am a digital child and I can see the handwritten notes falling by the wayside, or at least becoming less useful, as I like to grep for things.
Bringing this around full circle (maybe for the second lap), while I was reflecting on when I can remember issues starting I thought back to last fall when I was doing one of the Facebook live videos and was having some trouble throwing a largish vase. I dug the vid back up and found the part where I had a significant hand tremor that I hadn’t had an issue with when throwing before. I remember it because at the time I couldn’t believe that I was that out of shape that throwing a couple pots had worn me out.
My physical therapist pointed out that the tremors are, indeed, MS symptoms, and that I need to stop doing what I’m doing when they happen and not push myself. That’s going to be very hard. I have a lot of time sensitive projects on my hands that require quite a bit of physical activity. Already I’ve gotten behind while trying to sort of take it easy as I seem to be in the middle of a fairly lengthy exacerbation. I have a hard time asking for help, and today when trying to tackle a problem that absolutely needed to be completed by sundown it was looking like I was cutting it close. Debbie, without my knowledge, called our friend Jake and asked him to come help, which he did immediately. With his assistance I finished working on the garage roof with daylight to spare. I hate to bother people, and maybe this is a lesson I really (finally) need to learn.