Appearances can be Deceptive

by May 18, 2017Brain Tumour1 comment

"It’s not what you look at that matters, it’s what you see." - Henry David Thoreau

Appearances can be deceptive. On the surface I appear to be a quite normal, functioning human being doing what functioning human beings do. “You’re looking good” is what people say. Gerard, a charming man, my friend and coffee beans supplier, the owner of Don Adan Coffee in Mosman, tells me I look good, walking down the street like some sort of renaissance man about town. I suppose I do look okay. But looks can indeed be deceptive, and in my case, the aphorism is proven.

My brain is still not right, each and every step I take requires effort. From Gerard’s cafe, I take escalators to the supermarket. The escalators, now there’s a challenge. Going up I’m okay, it’s descending that creates the conundrum. Pausing at the top, focusing on the moving platform, waiting a few seconds while I analyse their motion, it’s then time to plant the foot. I don’t retain the ability to adjust quickly if things don’t go quite according to plan, so I’m cautious.

I’ve tried to describe the feeling inside my head, the same sense of other-worldness I’ve had since brain surgery. The word surreal, that chronically bandied about yet barely understood, almost magical state that defies description, like waking up in the middle of the night, walking into the kitchen to make a cup of tea, only to find a hippopotamus sitting on your bar stool eating peanut butter on toast, is, in my state, a conveniently apt one. It’s the whirring that envelops me, the feeling inside my head that, whilst I am alive, things are not normal. The occasional unexpected whirly-gig, as I struggle to regain momentarily lost balance, provides brief entertainment for those bothered enough to be paying attention.

This state has led to my having to re-sit my drivers licence test. I had done the right thing by letting the authorities know that I’d had brain surgery, I didn’t have to do this, I could’ve kept quiet about it, kept driving but I figured that doing the right thing was probably prudent. I had prescription glasses that corrected what is left of my double vision but my doctor, in completing a medical certificate, ticked a box that suggested a driving test to jangle my already traumatised nerves might not be a bad idea.

I wasn’t to know that the road authorities people would put me through the same exam as a learner driver is put through, those aspiring nervous young people who have been practicing for the requisite one hundred and twenty hours so that they can be put through the torment of becoming a responsible road user. I was given two weeks to comply, and for good measure, handed in my licence, was issued with fresh L Plates and found myself back learning to pass a test I’d passed forty years ago. Before I leave the subject, it’s worth noting that Kat commented that I was more nervous about taking my driving test than I was prior to brain surgery. A weird juxtaposition to be sure, it’s because I trusted my medical team.

On a similar theme, I got on my road bike again last week, to venture out onto the open road with the view that since I can now legally drive, there shouldn’t be any reason for my not being able to start pedalling on the same roads. I was wrong. Even throwing my leg over the saddle created its own set of challenges, in that my left leg, the dodgy one, the one that wasted away in hospital like a prune in the sun, couldn’t offer me the stability required to safely mount the bike. The leg wasn’t the problem, it was the brain that sends the signal to it that says everything is in order. A bystander would have thought me some middle aged lycra clad plod way out of his depth and perhaps would have proffered some advice, along the lines that perhaps I get some lessons before trying that again, not, instead an experienced middle aged lycra clad gentleman with a brain attempting to regain lost equilibrium.

During Easter, I had ventured out onto the open road, riding 15kms at North Head, a bike friendly stretch of road with no traffic lights or side streets to worry about, with a friend. It was difficult, but I did it. Riding in a straight line wasn’t the main challenge, it was stopping, turning, unclipping my foot, getting started again that gave me grief. On this occasion, I was on my own, and the realisation hit that I’m not yet ready to get back out onto the road. So for now, I’m stuck with the trainer but I’m grateful for it.

Away from the bike, if have to get up from a chair my equilibrium evaporates like the steam out from under a Chicago man hole cover, to the point where the environment inside my head takes on a kind of whirring sensation, where things that were hitherto straight in front of me are now off to the left, or to the right, or further up, or slightly down from where they should be in my line of vision. This whirring, it isn’t audible, it’s silent and just a little shy of insidious. I say “a little shy” because it’s manageable, albeit disturbing, I’m comforted somewhat by the fact that it’s a result of life saving surgery, so the alternative is considerably more disturbing than this ethereal physical and emotional hiccup.

My life is full of contradictions, no more than the average person perhaps but then again, considerably more contradictory. One contradiction is that whilst I can ride my bike hard for an hour and a half, I can’t put on a pair of jeans without falling over, although I am practising to remedy the limitation, making myself stand, even if it’s against the wall, until both legs are where they are meant to be. I’m making progress, determined to get one over whatever it is that deems I give in. The juxtaposition is comical if witnessed first hand, as my wife does, daily.

This “whirring”, it slows me down to the point where my self pitying self briefly concludes that it’s pointless doing what I had in the first instance set out to do but where my stubborn determination to conquer this fool thing wins out. Putting plates away is slow motion housekeeping, whilst there is much merit in doing some things slowly and deliberately it highlights the fragility of my current state. I knock things over, a glass here, a salt shaker there, its embarrassing and I can’t tell that I’ve dribbled something down my chin because parts of my head are still numb. I have lost all sense of smell so if I burn food I stand little chance of saving it. I drop things that I wouldn’t ordinarily lose grip of, car keys not held properly because of constant pins and needles in my hand, the keys slide down under the seat, requiring a rescue mission being launched so that I can start the car. The best method of dealing with such a circumstance when it arises is to laugh at it, belt the thing with the whip of humour, state with earnest intent that even if it should continue I still find the whole thing indecently funny.

Bending down too, is fraught with obstacles, the first being that in the act of so doing, there is the overwhelming feeling that my head may not stop, that it may keep going until it connects with the ground, something that was clearly not part of the original plan. So I avoid bending down if I can help it. Heights too are an obstacle, or more to the point, ascending to a height. My body takes on the characteristic of a reed bending in a strong wind, an unwelcome weather report.

Fatigue jumps on my back without warning, like an insistent 8 year old child, the only way to assuage it is to stop where I am. I quickly get tired, a universal sensation to be sure but my best method of dealing with it is to look for the sofa and just sit down for a while. I have no complaints, I am trying to pace myself, knowing that the monster is waiting for me if I get too adventurous. But it’s a worthwhile exercise to frame my limits. We’re driving to Byron Bay in the next couple of weeks and we’re taking our time to get there, three days to do a drive that others might chew up in a single effort.

My speech, also, is a bit problematic, I have a pronounced stutter, it doesn’t particularly bother me but Kat worries about it, she thinks it’s a sign of stress and fatigue. It’s not. Some well credentialed people have told me the stutter is merely part and parcel of the brain’s recovery. I-I-I-I s-s-s-s-truggle to get the words out, I pause for a moment, take a breath and then I’m okay.

The scar across the top of my head has, in the past few weeks, become more prominent. It’s now ostentatiously visible, spindling and ambitious in the way it presents itself, informing everyone that damage has been done somewhere underneath it. I don’t mind it, it’s a reminder that I have come this far and that I intend on going just that little bit further.

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Christine Kemp
19 May 2017 12:08 PM

WOW Steve thank you for sharing so insightfully a fraction of your current journey. You write so incredibly well. What a courageous and inspiring man you are and to get where you are and still suffer immensely.

Lionel is reading your blogs as he has just had a bout of 10 days in hospital with severe cellulitis. He has many restrictions as a result of one, his former cancer surgery and now this latest episode.

Thank you!
Chris Kemp xx