It’ll never happen to me …

It’s the beginning of April, 2011, and I’m on board the Jubilee, a large yacht under sail in the middle of the Pacific ocean, on my way to Australia as part of an international race. As we batter our way through the choppy seas, I hear the clink of dishes and clatter of pots and pans coming from the galley. The occasional door slams shut, somewhere swung closed by the boat’s continual motion.

From my bed, I see nurses and doctors all wearing hospital OR scrubs in pastel colours, hurrying back and forth from their stations, answering phones and looking at charts. Seeing me sitting up in bed, one of the nurses, comes over to ask if I’m okay.

It’s all very unreal —– because it isn’t.

Real, that is.

I’m hallucinating wildly in the cardiac ward of the Royal Jubilee Hospital in Victoria, BC, recovering from open heart surgery — a quadruple coronary bypass. But I’m firmly convinced I’m on a hospital ship,

Either I’m getting over the lingering effects of the anesthetic, or  I’m experiencing the manifestations of Rispiridone a powerful anti-psychotic they were giving me, possibly to quell the hallucinations which can themselves be a side effect of the drug.  I thought I’d been flown to the ‘Jubilee’ on a helicopter as part of an air sea rescue exercise and I even had a copy of a newspaper photo of the genuine exercise which I believed was a shot of me being hoisted into the helicopter cabin. I  also imagined my arms had been strapped down with cloth restraints. Or had that really  occurred?

I kept trying to look over the bed rails to try to catch sight off the quay where  I was sure the Jubilee was moored and there was a danger I’d spring open my newly reconstructed breastbone which had been split and closed with wire sutures to allow the surgeon to reach my heart.

One of the inherent risks of an open-heart bypass, is the danger of a stroke occurring.

Cardiac surgeon Lynn Fedoruk had assured me the chances of this happening to me were in the order of two to four percent, Negligible, in other words. She didn’t say that, but that was how I interpreted it. So I agreed to the surgery. But somewhere along the line, a speck of calcium hidden in my aortic arch (see above) fragmented, sending tiny pieces to both hemispheres of my brain, causing serious blockages in the blood supply.

It was a stroke.

CVAs

CVAs , or cardiovascular accidents, in medical parlance, can happen to anyone, young or old, anywhere, any time. It’s estimated that six percent of all deaths in Canada are caused by them, and they’re the second leading cause of fatalities worldwide

More than 50,000 strokes are recorded in Canada every year, and according tostats Canadian Heart and Stroke Foundation statistics, CVAs they’re the leading cause of death in this country, adding up to one every 10 minutes.

I was 69 when I had the stroke. I was unconscious, having a piece of vein taken from my left leg onto grafted onto my aorta to bypass the blocked arteries.

I didn’t know anything about the CVA, or what symptoms told the surgical team I’d suffered one. Nor do I remember the steps leading up to the actual bypass operation. However, I knew exactly what was going to happen because in the 70s and 80s, as a freelancer, I’d had a series of columns on common surgical procedures published in the Toronto Star and Globe and Mail. The articles were meant to give readers an idea of operations they might one day experience themselves.

Wearing sterile scrubs and standing well back from the operating area, I’d watched the procedures actually performed and the first had described – you guessed it — a coronary bypass.

Now, more than 30 years later, I was on the receiving end having the same surgery as former Canadian prime Minister Jean Chretien and ex-US president Bill Clinton both of whom have undergone quadruple bypasses.

It’ll never happen to me

Heart attacks — are like car crashes. They only happen to other people. Or so many (most?) of us kid ourselves into believing.

On March 26 2011, when I was laying comfortably in bed when I began to feel a dull, but powerful, ache behind my left shoulder blade.

I wasn’t particularly worried – I’d had similar spasms before and they hadn’t amounted to anything, not that I knew of, anyway but my wife insisted on driving me to the local hospital emergency department where, despite my protestations that I was OK, that it was probably only heartburn, after relating my symptoms to the admittance clerk, I was taken in a wheelchair to a curtained treatment cubicle. There, a nurse drew blood from my left arm. Soon after, a young doctor pushed aside the curtains and told me I’d had not one, but two heart attacks which ultimately led to the bypass and a second big operation to fix a “catastrophic” (in the words of one of my doctors) infection in my sternum which’d been openned to allow the surgical team to reach my heart.

The Beginning …

Around April of 2012, I noticed swelling around my ankles. When I pressed the puffy areas, my fingers would leave visible indentations.

I was somewhat, but not seriously, overweight and I’d get out of breath from merely tying up my shoe laces or walking up the stairs. I’d also get very bad pains in my lower legs if I walked any distance, so naturally, I went to my family doctor, but he didn’t seem particularly worried.

However I was a heart attack just waiting to happen. Because, when taken together, these complaints were early warning signs of a sick heart beginning to give out.

The odds were in my favour …

Coronary bypasses are the most common surgical procedures in North America. Pieces of vein are carefully harvested from the chest or leg and used to shunt around blocked or narrowed heart arteries. Because the sections come from the patient’s own body, the chances of them being rejected are virtually zero.

As a former medical writer, I’d seen the operation first hand and I knew it involved having my sternum split down the middle, not an attractive prospect under any circumstance. And while I was watching the same procedure being performed on a man of about my age in a major Toronto hospital, the man exsanguinated, possibly because the alreadywalls of his aorta were dangerously thin, rupturing when surgeon began to stitch the grafts onto it.

He bled out and died. And, it turned out, his heart was badly scarred from previous unrecognized infarcts.

Having already survived at least heart attacks, would I live through a third? So deciding whether or not to undergo a relatively routine operation at the hands of an experienced thoracic surgeon, or risk sudden death from heart failure, didn’t require much thought ,although if I had the choice again, I’d think twice because Fedoruk’s assurances notwithstanding, as mentioned earlier, I did in fact have a devastating interacranial episode while I was on the operating table.

Nor did it end there. I needed a second major operation to take care of a ‘catastrophic’ wound infection (in the words of one of the doctors looking after me) which broke out in my sternum very soon after the first operation.

And I had to deal with the continuing debilitating after-effects of the stroke itself, which persist to this day.

But there’s a second, for me, far worse problem.

Apart from leaving me temporarily paralyzed down my left side, the stroke seriously compromised my vision. My sight in both eyes is now partially obscured by oval-shaped patches filled with tiny, brightly coloured geometric shapes which seem to be forever floating in front of in both eyes.

Although I noticed, and mentioned, these visual obstructions early on whilst undergoing neural rehabilitation at the Victoria General, the condition is still undiagnosed, so I did a little research of my own and discovered it’s probably something called “scintillating scotoma,” sometimes known as the “fortification spectra” because, as Dr Gordon T Plant pointed out, very often it also bears a remarkable similarity to ancient fortifications in the Dutch town of Naarden (see below).

I’ve had pain free ‘ocular migraines’ for years but what I experience now is something totally different.

I’m not blind in the strict sense of the word; rather, my vision is ‘merely’ seriously impaired.

And there’s another problem, also caused by the stroke. It’s called hemispatial neglect, a condition “in which, after damage to one hemisphere of the brain, a deficit in attention to and awareness of one side of space is observed,” says the Wikipedia, going on, “It is defined by the inability for a person to process and perceive stimuli on one side of the body or environment that is not due to a lack of sensation. It’s “very commonly contralateral to the damaged hemisphere, but instances of ipsilesional neglect (on the same side as the lesion) have been reported.”

In his book,The Telltale Brain, neuroscientist VS Ramachandran, sums it up like this:

[… ] “the parietal lobes are primarily involved in processing touch, muscle and joint information from the body and combining it with vision, hearing, and balance to give you a rich ‘multimedia’ understanding of your corporeal self and the world around it.

Damage to the right parietal lobe commonly results in a phenomenon called hemispatial neglect: the patient loses awareness of the left half of visual space.”

Following the stroke which hit during my bypass, it’s a condition I now have, but it isn’t confined to the left, although that’s where/how it’s primarily manifested.

Sometimes my left arm or leg will feel disembodied and I have to look to see what’s going on, and there’s a general feeling — ‘sense’, really — of vacant space instead of actual sensation.

It’s very difficult to explain; it’s as if there’s a visual vacuum. I can see perfectly well, but somehow, what I ‘see’ doesn’t register in my brain and I’m inclined to collide with things and people, particularly in crowded situations such as stores and marketplaces.

My wife, Liz, and I now own and operate a small Vancouver Island hot sauce business and during a recent trade show in Nanaimo, I met a young woman named Courtney who’d suffered a brain tumor at a young age which also produced hemispatial neglect.

I now use a collapsible white cane so people can see me coming: ) Courtney uses one also, but in her case it’s to find her way around.

The condition can also be very unnerving in some circumstances such as when I’m walking between narrow spaces,with walls on both sides; i.e. an alleyway.

Right-sided spatial neglect is rare because there’s redundant processing of the right space by both the left and right cerebral hemispheres, whereas in most left-dominant brains the left space is only processed by the right cerebral hemisphere.

In his book,The Telltale Brain, neuroscientist VS Ramachandran sums it up like this:

[… ] “the parietal lobes are primarily involved in processing touch, muscle and joint information from the body and combining it with vision, hearing, and balance to give you a rich ‘multimedia’ understanding of your corporeal self and the world around it. Damage to the right parietal lobe commonly results in a phenomenon called hemispatial neglect: the patient loses awareness of the left half of visual space.”

It’s a condition I now have, and I’m not so sure it’s confined only to the left. And sometimes my left arm or leg will feel disembodied and I have to look to see what’s going on because there’s a feeling of vacant space instead of actual sensation.

It’s not, however, all bad. One of the brain’s most amazing abilities is to be able to quite literally rewire, or reroute, itself,

Starting in the 1990s, [the] static view of the brain was steadily supplanted by a much more dynamic picture, Ramachandran states, going on,

[… “The brain’s so-called modules don’t do their jobs in isolation. There is a great deal of back-and-forth interaction between them, far more than previously suspected. Changes in the operation of one module say, from damage, or maturation, or from learning and life experience can lead to significant changes in the operations of many other modules to which it is connected.

To a surprising extent, one module and even take over the functions of another. Far from being wired up to rigid, prenatal genetic blueprints, the brain’s wiring is highly malleable and not just in infants and young children, but throughout every adult lifetime.”

Hospitals are dangerous places

According to the Wikipedia, the first surgery on a living, beating, heart was carried out by Norwegian doctor Axel Cappelen on September 4, 1895, at the Rikshospitalet in Kristiania, now Oslo.

In the 21st-century, open heart surgery is common, but it’s never routine.

Hospitals, including the Royal Jubilee in Victoria, BC, where I had my surgery, are extremely dangerous places and I’d picked up an infection in the incision in my sternum.

No one knows quite how or from where it originated, but it could’ve killed me just as dead as the heart attacks. As part of the treatment to rid me of the infection, I was hooked up to an intravenous antibiotic pump which noisily churned away non-stop throughout the night and for six weeks I was periodically woken up to have the plastic bag containing the penicillin replaced.

But what affected me the most wasn’t either of the operations: it was the stroke. Its after-effects have been and still are, many and varied, creating a number of unpleasant cognitive ‘deficits’ in my feelings and emotions.

Telling Time

The part of my brain which deals with sequencing was damaged, which means I had, and still have, trouble telling time with an analogue watch, although digital time-pieces present less of a difficulty. And I’m always having to ask my wife what day or month it is.

Moreover, I have a type of apraxia, an inability to “execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements”, a “disorder of motor planning,” as the the Wikipedia puts it, going on, it affects one’s ability to “carry out learned complex tasks in the proper order, such as putting on socks before putting on shoes”.

For five or six weeks, while I was an in-patient for neurological and physical rehabilitation at the Victoria General Hospital, and every time I left my room I’d get hopelessly lost. It reached the point where the nurses had to inflate a blue rubber surgical glove and tape it outside my door so I could find my room. It looked like a small, cyan cow’s udder But often, even that didn’t work and I’d roam the corridors like a phantom, trying to find my way.

However, the nurses never lost their patience with me, redirecting me time.

As I write this, just about a year after my heart attacks, my brain still sometimes confuses my left with my right hand. But this has its advantages. In our home, I’m the designated washer-up and it’s the perfect excuse for broken dishes..

But by far the most most bizarre and worrying problem following, and resulting from, the stroke was/is the distinct idea – feeling, really that a new person now occupies the mental space I’d thought of exclusively as ‘me,’ or I should say ‘us,’ ‘us’ the community of cells which make up our ‘selves.’

To all intents and purposes, the trio comprising Me, Myself and I died on the operating table.

We’ no longer exist.

This also dramatically affected, and continues to affect, my moods which in turn also impacts my wife and daughter Emma, who are doing their best to put up with the depressions, and sudden outbursts of temper which characterise the new Jon.

I’m still grappling with the fundamental question: who is this apparently new person, this interloper who’s squatting in my brain? Will he evolve into an entirely new ‘Jon’ with new perceptions and thoughts? Or will he be a mere shadow of his former self?

Will there be a positive side? Will I now be able to do things I’ve never been able to do before but like understand mathematics ? So far, there’s no sign of me developing any extraordinary new skills developing, but I’m still hopeful 🙂 Meanwhile, certainly, there already are major changes separate from the disappearance of my previously resident personality, such as the “left neglect

To make things really interesting, I’m a recovering alcoholic and drug addict.

Having said that, how are things today, and weeks and months after surgery?

Physically, they couldn’t be better. Once again, I’m able to help Liz with our embryo business — lift cases, and so on. But I’m still struggling with difficulties relating directly to the stroke. What, for example can be done about my hemispatial neglect?

Problems, problems

I used to own and edit p2pnet.net, a well-known Canadian freedom of speech advocacy site,relying on advertising for income. But, in late 2009, when the economic crisis took hold in the US, where many of my advertisers were, I lost practically all of that income and Liz and I had to quickly find another way of making a living.

We decided to turn to something we’d already dabbled at a few years before and in February 2010, we launched a small business making gourmet hot sauces which, initially, we sold at local farmers’ markets. But it didn’t take long for Dad’s Westcoast Wildfire Awesome Sauce, as we’d called it, to catch on and soon retail outlets on Vancouver Island the were carrying it.

Just before I first went into hospital, we’d reached a critical point in developing our venture, where we had to make a major marketing push to get our business to the next level. It but it would’ve had taken the two of us to do it.

For the ten weeks I was in hospital, my wife had the burden of running our start-up by herself, bottling, capping, labelling, printing labels, driving.

Things are still tough (for example we’re both dealing with my recurrent bouts of severe depression which inevitably follow major surgery of any kind, but overall things are looking promising and I’m anticipating they’ll slowly but steadily improve, especially if I use the technique I employed whilst giving up drugs, cigarettes and alcohol – minute by minute.

And in the meanwhile, I’m counting my blessings which are many.

However, looking back I didn’t expect to be able to do the things I can do now; For example, I used to play guitar but for long time, I completely lost interest not only in it, but in music generally.

Now I’m slowly relearning guitar, and my enjoyment of music has returned in full.

So, things could definitely be worse.I could, for example, be dead :)

Jon Newton – myblogdammit.net

[Follow me on Twitter @jonnewton8, and/ or identi.ca]