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.

Word. Words?

The Cave

The most difficult thing is to communicate, to explain anything as I am recovering from the removal of my benign meningioma (the brain tumor that was diagnosed in October of 2011). While I may seem to be myself, I really do not feel myself yet...over four months out from surgery. I enjoy being alive and I am experiencing a creative surge that my productivity can barely keep up with, and most of all I am grateful surgery went well and I can still be available to my kids and my husband in the most important and general ways. Yet, there are disconnections and missteps and losses that pop up into my day-to-day existence that cause me to ponder how to really get to recovery that feels 100% beyond the general and that is specifically me, the person I know myself to be.

Moonsight

Writing from the heart is, perhaps, my greatest challenge. I write something over and over again now, that, before this adventure, may have seemed acceptable after one or two tries. My heart feels disconnected from words mostly. I do not know currently if it is because I was blinded to the confusion in my structure and connection before, or whether it is because I will run into a word that I have an idea for but cannot locate in reality, and this is part of recovering. I’m quick to replace those words but often my replacements lead me down another road than I’d intended. This happens in conversation as well, a constant reaching for words that match my ideas and thoughts. I used to have a vocabulary.

Further developing this word replacement in a “benign” way, a way that is constantly entertaining to my kids, my brain seems to work a lot like a smartphone type screen - in that it offers a slew of words that are somewhat similar in spelling and often chooses that word arbitrarily. Spelling or phonetic choice having a higher priority than meaning everytime. I try to catch these words and replace them correctly as soon as I can, but, if you’ve used a smartphone at all, you know that it is a frequent problem to have commented in a way you never intended. Bring that to a conversation. Add another person to the conversation, or a roomful of conversations, or a radio or a television in the background and imagine the brain reaches out and grabs any number of words and spews them into the conversation you’re having with complete disregard to what you’re actually talking about. Yes. I’m a lot of fun. My daughter says with an awesome smile on her face, “Mom, you said that with so much confidence!”



I’m wondering if I’m writing any of this in a way that you can understand, but I’m going ahead and posting it just to see what the response is because maybe I’m the only one that is frustrated. Because this is the other thing, when I try to read this stuff, it is difficult to decipher. It is difficult to decipher an article, a chapter, anything longer than 144 characters. I feel like I should hold my hand and get serious about sitting for an hour reading, but after 10 minutes, I’m lost sometimes. Not always, but sometimes I am simply unable to read. Sometimes a person hands me a business card or an appointment card and I look at it as if it is a picture, waiting for comprehension.

Nature's Balance

All of this word stuff would be driving me even more crazy except for the fact that I feel free, in a way, of the obligation to know everything for once. I have become aware of the weight of my expectations around words. I would like to skip the know-it-all need sometimes. Sometimes I would like to turn my back on the old way, and accept that I’m now primarily a visual person, someone who communicates with icons and symbols. Sometimes.

Then I have an idea for a story, or a letter, a good conversation or a speech and I’m revived in the battle to win my brain back.


2012 (c) Amanda Morris Johnson

Keeping it Real

How am I really? Har. I have a benign brain tumor. No really, I’m currently not on any medication other than Benadryl and vitamins. I’m trying to tamp down the allergic reactions I normally have with the Benadryl, and I’m trying to support myself nutritionally and with an added boost. My face, I am apparently actually vain about it, has shrunken down to its normal cheery roundness. I no longer have strange aches and pains in my legs. I no longer have a web-like red rash all over my body.

That said, I’m tired. I am unable to tolerate very much disruption these days. My kids were home with me this weekend, and I failed as an organizing principle and entertainment wizard. I foisted responsibilities and gave up perfectly good opportunities to share experiences in favor of lying in bed and staring at the ceiling. I let my mom take them out of the house on Sunday and did not volunteer to join in. This is not my normal mode of operation. This is the antithesis of me. The only consolation I have about this is that maybe this is not the new normal. Maybe this is something that will pass, but I don’t know when or how.

That not knowing is pretty frustrating. This morning I had a dream of entering a hospital that was no less intense than a Hollywood contract negotiation. There were a million documents to sign and agree to, and in the dream there were twin lawyers who wanted to know just what the extent of my expectations for recovery were, and were not interested in agreeing to my bright prognosis. They wanted to create a hedge fund that would diversify the estimates for success. They offered me ample evidence to second guess my intentions. Luckily, the hospital was decorated with my grandfather’s paintings, paintings I’d never seen before and I took that as the single most important piece of information pointing to a good omen.

These days I feel as if I’m in a battle with a super-human Amanda who is used to working on so many different levels it isn’t funny to lowly little ol’ me, who has aptitude, but only for single-minded tasks. I am aware that I am in a holding pattern here and running out of fuel while this battle rages. Super-human Amanda is the one who is frustrated by the delays and the reactions and the exclusion from normal activity. Little ol’ me is biding time, being deceptively non-chalant about what can be done and what has to be dropped as if this is a thing I’m really good at -- choosing priorities.

When I don’t choose fast enough the result is nearly immediate. I end up with a headache to beat the band. I end up unable to get myself to sleep. I end up having the blood boil at the surface of my skin, turning me a Barbie hue that only recedes with bed rest. This is forcing me to be much more ruthless in my non-chalance about commitments and plans. This forces me to encourage my kids’ independence more forcefully than ever (my son noted that my temper is a lot shorter - but what he doesn’t realize is that I’m desperate to know that they’ll be okay no matter what unfolds).

Tomorrow I hope I will get a new lease on life from an allergist. I’m hoping that he’ll be better than any other allergist I’ve ever seen, and will come up with an answer about the anti-seizure medication conundrum. I’m hoping that he won’t lower my expectations for full recovery, or hedge his bets with shrugs and concerned looks like my neurologist. In short, I’m hoping for a minor miracle with the bigger miracles to be formed just around the corner of time.

That’s how I am today.