Mar 23, 2013 6:53pm
As we attempt to get into a more normal rhythm of life at home, poor Julia has been reluctantly snowed under by her work commitments (and her stroke carer commitments continue!) so, sadly, we may not see her around here until her deadline is over..
Meanwhile, my brother Dom and I have been pushing as hard as we possibly can on my exercises, trying to get as far along with them before Dom goes home to his family in Australia. We have managed a few personal bests and, thanks to repeated leg exercises, my first standing pee since Christmas. (Hallelujah, amen). Now that I am back in the leafy quiet of Park Merced, we have been going outside in the bright winter weather and walking around the block, me doddering along with my old man style quad-cane, being shadowed by an ever watchful Dom with a wheelchair, in case I have to tap out, which thankfully hasn’t happened yet.
It is amazing how fraught with drama a simple walk around the block can be, when your balance is completely shot, and you don’t have a functioning calf or ankle muscle. Every undulation of the paving stones is a mountain, every subtle puff of wind is a gale. I must have walked this block hundreds of times before my stroke and it never seemed remarkable, but with my newfound topographical sensitivity, I can see that whoever paved the northern side were utter maniacs, thoroughly drunk or both. Every stone is set an an angle to its neighbor, festooned with foot-tripping evil tree roots and sinister leafy debris.. I would like to blame this veritable DEVIL’S PASS for the time it takes to walk the entire block, but the fact is that I am slow even on the smooth parts. It takes me over an hour to do the circuit, one shuffling inch at a time.
One of the strange parts of having a stroke is how alien your own body becomes. My arm, my leg, do not seem part of me any more. They do not do what I want them to do and even on the rare situations when they cooperate, there is still a sense of strangeness simply because I cannot feel them. When I manage to make my arm raise itself, it mostly has the jerky aspect of a theme park animatronic, or one of those videos you see of a creepy robot built by a Japanese university. And if a sense of alienation from your body is strange then consider not being able to make sense of what has come out of your own mouth. Thankfully this is not something that I wrestle with now, but my memories of a time when it was common are still very unsettling just the same.
In the first two or three weeks after my stroke it seemed that I was suffering from multiple personality disorder; sometimes I accurately remembered the sequence of events that led me to hospital and at other times I supposedly claimed myself the victim of a violent assault, or at other times a car accident. This is strange to me now, because I have a very vivid memory of being physically paralyzed by degrees, which ended in a life or death crawl across the carpet for the phone. I remember that I was not exactly sure what was happening to me, (maybe an aneurysm?) but definitely something serious, and I certainly didn’t think I had been hit by a car in my own bedroom.
In most cases I only hear about these other versions of me; I have little or no memory of them myself, but I often wonder what was going on inside my mind in those early weeks.. The first week was spent in the ICU, the intensive care unit, and of course it is impossible to get any sleep in there. Unlike a regular hospital room, where they sometimes turn down the lights and let you sleep, the ICU is more like being on the bridge of a submarine at battle stations. It is that part of the hospital where you are being monitored very closely, 24/7, and there is consequentially no such thing as sleep.
For a full week I had pipes up my nose and electrodes attached to my body and a constant stream of people rushing into prod or poke me, inject me, take readings and debate them at length as if I were not there. I was sleep deprived, God knows what manner of sedatives I was on, and of course there was the little matter of a swollen brain.. All of this makes for a very hallucinogenic state of mind, and my memory of it is of being in a fog which would sometimes clear, and lo and behold, some dear loved one was sitting at my side. We would chat briefly before the fog would sweep in again and take me away.
According to MRI and CAT scans, my stroke happened deep in the brain, almost at the brain-stem itself, at a region called the thalamus, which is often described as being a ’relay station’ or ’switching center’. It has a secondary role related to movement and that is why my physical recovery will be quite slow. It is one thing to be paralyzed but it is another to lose the sense of touch and the sense of body awareness, of ’proprioception’. When I close my eyes I cannot accurately say which way my limbs are oriented. This means that my balance and movement have been inhibited quite a bit. My stroke is quite ’dense’ as my physical therapists would say.
But, in the big scheme of things, I have been unbelievably lucky in where the epicenter of the the stroke actually occurred. There is a lot of valuable real estate inside our brains; areas that store our memories of our loved ones’ faces, or of life changing events from our past. I am lucky that the damage was not in a part of the brain that stored my sense of self, or any one of hundreds of places that makes me ME; those seem to have been spared.
I am still me.