Recovery…it comes in fits and starts. Between
those ‘fits and starts’, Symptomatic behavior that has seemed to fade and be
leaving leap forward and take charge of our life in a way that isn’t suspected
up till then.
Bouts of depression, lasting a few hours, or
all day, take charge of your perspective and rationality, so that your outlook
becomes dark and cloudy and filled with dread.
One can be overtaken by sudden spasms of anxiety, apparently linked to
some approaching doom, but linked to nothing that can be discerned. The
experience is of being frightened, twisted in uncertainty, figuratively gasping
for breath to ward off…what?
All of these combine in one form or another,
with the cruelest of all the symptomatic experiences: memory loss. Everyone
reassures you that they forget things all the time, and then they wave it off
with a sigh or a chuckle. I’ve stopped trying to explain that while this,
indeed, happens to me, the experience I’m trying to survive is the sudden
awareness that whole blocks of your life are missing. It might be a chunk from
a decade ago. It might be the whole of yesterday. Worst of all, it might be the
last four hours, leaving you wondering what, if anything, you have been doing,
or have done.
An example: nearly two weeks ago, a courier
dropped of a package with my name on it. I opened it, and discovered a jazzy
and tiny piece of technological equipment in an apparently indestructible
plastic bubble. Some months ago, I had read about this gizmo, and even looked
at them in a tech store. After discussing the wonders of this bit of magic with
Beatrix, I forgot it…or did I? That was the question that began to haunt me
over the next few days. I was preoccupied with trying to find a way to open the
plastic bubble short of taking a hammer to it. I was also preoccupied with the
possibility that I had ordered this for myself. But I could locate no memory of
that event. Not being able to locate a memory is part and parcel of the outcome
of a cerebral event. I repeatedly asked Beatrix if she had ordered it, or if
she could remember me ordering it. Blanks all around.
Now, for you normal people out there, as
distinct from us ‘brain damaged’ folk, it would seem logical to wonder if this
package was related to Christmas coming. Such logic rarely intrudes on the
thought process of a wounded brain. The focus is narrowed; the search for the
needed memory becomes intense, obsessive even. And, of course, this intense
internal wrestling inevitably raises the blood pressure – the one symptom you
are told to avoid. “Don’t get excited about anything” was the straightforward
physician advice I got on leaving the hospital. I quipped, “What, you want me
to exchange my personality for a new one?”
Trying to remember, trying to locate an
action, or even a decision, that would give a reason for this arrival, is an
exhausting exercise, and one that can be marked by blood pressure results. Of
course, the search was not aided by the gizmo itself. Cunningly packaged so
that a seven year old could figure it out in a few minutes, an old geezer,
brain damaged and technologically deficient, worked on for hours. Fruitlessly.
The whole thing was like a computer game. If you crack one level, you are
immediately faced with an even greater challenge. I opened the bubble!
Instructions for further advancement were contained in cryptic sketch drawings
of what to do, No language descriptions. (Why would a technologically savvy
seven year old need words?) I discovered words on an attached cardboard. It was
black matte, with tiny lettering on it in silver ink. Under the strongest light
I could find, and with glasses and a magnifying glass, I could read nothing.
Not only anxiety and exhaustion, but also a profound sense of defeat, followed
by depression. Not only was I unable to remember when or if I ordered this
‘thing’, but I couldn’t access it or understand the directions to access it.
And my blood pressure had been ‘up’ for some days.
I did the only sensible thing at that moment.
I put the whole thing, gizmo, bubble, cardboard and discs in a large bowl out
of my sight. I contemplated, not for the first time, the ultimate action of
returning the package, stated that I hadn’t ordered this thing. Had I? Or
hadn’t I? I still had no idea.
This lengthy story of a tiny event that
became the locale for an accumulation of post-stroke symptoms is illustration
only. Recovery proceeds, lurch, stumble, step, pause, then sIt’s like watching
a very drunk man try to navigate the street. It’s funny to watch, sometimes
hysterically so. Once in my life I experienced that state. Not funny;
terrifying. Trying to ‘do the rational, the ordinary’ while attending, with
intense focus, on making your legs work the way they did this morning.
Learning, just recently, that the gizmo was
indeed, ordered by others for me did not produce a sense of relief. It was more
like running face first into a wall. How come I couldn’t figure that out? How
could I be so stupid (a word that crops up a lot as you struggle to look
normal)? Why didn’t someone tell me this was coming, so I wouldn’t have to
spend so much energy wracking my brain for a memory that wasn’t there? It’s bad
enough to look for a memory you’ve lost (but did have); worse, to look for a
memory that never was there. At the end, you sit there, figuratively gasping
for breath, exhausted by the race or the climb, and totally demoralized to
learn that there was no race to run, no hill to climb. You were wasting your
time and energy on……nothing. For the time being, not a good day.