A Year Since, Part I

Part I

It has been a year since I went to St. Anthony’s Hospital at the crack of dawn and had
my skull sawed open, an incredible year in many ways. I survived. That’s the
first thing. I survived and have so much to be thankful for all that’s around
me. I want to review that for my own good, and to clarify that challenges can
be met. The second thing I have to do is to face that in the next six months
or so I’m going to know how far the healing can go, and I’ve already begun to
accept that there are now things that will never go back to the way they were
without a miracle.  Finally, I want to do something with this acceptance
besides sigh, I want to embrace what I can do instead of tripping over the
obstacles again and again.

When I announced that I’d been diagnosed with a brain tumor, a benign meningioma on my left temporal lobe, back in October of 2011, I was rather in shock to be
honest. Giddy almost, I was, that there was really something to blame for the
never-ending headache and messed up phraseology. It wasn’t all-in-my-head, but
really it was something and it could be addressed now! Then I had the challenge of
getting on the right medication to deal with it, and that was a four-month
ordeal I didn’t expect, but like everything in my life, it seems, sort of
slowed down the pace of my impulsive tendency to rush in. I need those slowdowns
to step right up often, and so they seem to do that.

During those four months I received a great deal of support from people all over the
world, and dove deeper into far flung friendships through poetry sharing and
commenting deep into the lonely nights. I so appreciate the willingness of
people I barely knew then to stand by me, even if only in cyberspace, and
listen to my moaning and groaning, cheer me up with good and naughty jokes and
hold my cyber hand. I did not want to visit in person that often with people at
that time. I did not have much vital energy for live chit chat, but I valued
not being totally isolated. What an awesome social web it was, keeping me from
falling into a chasm of despair.

Meanwhile, my family drew in and caught me when I fell and let me cry on their
shoulders when one medication after another turned out to be that list of side
effects they play out at the end of a commercial. The fact is I will never know
if I could have made it through this experience without walking my dog, without
knowing that I was needed by my kids for something or other, without long hugs
through dark nights. They were there and they helped me through, and that is it.

So, the surgery went really well, I still believe, even if it isn’t to this day
perfect. It took four hours. I felt immediately relieved of the grayness that
had been in my head for nearly a decade and was getting very dark up to that
moment. I could count, speak, write, talk, walk and eat. All is well. I went
home in five days. I laid around for a week or two, and took up drawing,
inspired by “My Stroke of Insight,” by Dr. Jill Bolte Taylor, whose
book I read before surgery. I had the notion that if the pressure was off my
left temporal lobe finally, perhaps, that gave my right brain a chance, a chance
to finally get a word or an image into the conversation I have been having with
life.

Five hours after they sawed my skull open...might good hat!

Oh my!

2013 © Amanda Morris Johnson

The Wink of Potential

Cabaceo
2012 (c) Amanda Morris Johnson

Seven Months out from surgery today! It seems like forever, but I know it is not really that long in any real perspective. I feel a bit like I’ve gone from newborn to a  seven-month old in terms of the leaps of knowledge that have occurred. I’ve gone from, “I don’t know,” to “I don’t know and that’s all right.” Grin. I know how to smile and laugh and sit up now. Of course, I write metaphorically. I could do those things within coming out of anesthesia in the hospital, but now I seem to understand the reality of what’s going on a bit better.

Here’s the thing: They weren’t kidding when they said it would take a long time to heal. Considering how much better and brighter I felt within weeks of the brain surgery, I did have the hubris to believe that I was all better more than once along the way. What I have learned is that the things I am able to do, and the things I ought to do are not a necessary match in the scope of self-care, and real holistic health. I am able to do pretty much anything I want, even write, but my constant temptation to show this to myself and anyone in my periphery is dangerous to my full recovery. I’ve paid for over-doing time and time again since the beginning of summer time because I am stubborn about my ability and not stubborn about my rest. I am trying, trying to switch this in my thinking and planning, but am really an amateur at knowing what schedule I can really handle and I know there is so much I want to be that rest, meh, seems like a Universal manipulation to undo my ambition to be frank, and yet...

When I do too much, and I write this for anyone recovering from serious surgery, I pay for it. There is no recourse. I am down and out, and it isn’t from major efforts. It is from
efforts I consider normal, like seeing friends, taking on a little more work, and generally expecting myself to be productive. I can’t do that yet. It seems insane to me most of the time to say, “No, thanks, I’m not up for it,” when I feel fine. But just because I feel fine after a good low-down time, does not mean I will feel fine after I do the most mundane things to “catch-up” with one thing or another. In fact, I will be knocked out. I am susceptible to colds and headaches, like everyone else who is overdone, but what I am most susceptible to is exhaustion, and it feels disappointing and pathetic to me sometimes.

I really understand how frustrated babies must feel when they cannot do yet what they want to do. It is just around the bend, so close, but sitting up alone, or standing up at the
coffee table is simply not a solo act yet for them. Eating chewy foods are out of the question. Ah, the life of a babe. It seems from the very start of life we are in a rush to catch up and catch on and perform. Is it even possible, within our nature, to be calm and enjoy being slow, and being where we are at? Maybe only if we are surrounded by folks who are in exactly the same place and that doesn’t happen ever, and I suspect even then we’d compete to see who elevated off the floor first.

How can I limit myself, and admit that I cannot take on a normal life when I want a normal life? It is not possible. I just keep edging forward until I fall. I cry like a big baby at the
feeling of failure. Then I do it again!  I really believe this is the nature of our being and to pretend that I’m going to acquiesce to self-limitation until I am better is like putting a child in a car seat and never unbuckling him. I’m going to fall over and have a few bruises and need some recovery time, but each time my determination enters that recovery time sooner. I remember that my potential for accomplishing my dreams is as important as lying down to lick my wounds.

Today, I am in bed with laryngitis, but lack the interest in staring blankly out the window has caused me to write, when drawing out on the dining room table seems too energetic. I will not last all day here. The person I want to be whispers in my ears constantly, “Get up and see what happens...” like the "Cabaceo" look of a gentleman who'd like to dance with me.