In movies or on TV, there is often a quick montage to show someone recovering from illness or injury. It spans a minute of screen-time, and then they are back at living life with the same vigour that they had before. More even. But a real life medical recovery can represent years, and right now I’m living in that 60 second healing montage that actually takes years of my life.
I was made to think about the short-hand that fiction often uses for complicated medical issues while watching the high grade British soap opera DOWNTON ABBEY. One of the main characters is wounded in World War I, and comes back home to England in a wheelchair. After a few episodes of moping about the place, as a ’woe is me’ cripple, he suddenly springs up out of his wheelchair spontaneously to stop an elegant Edwardian miss tripping on the rug, and boom: he’s cured. Just like that, he can suddenly walk perfectly. ‘Righto, time for a spot of tea and scones, what?’ This approach is so common in the stories around us that it is difficult not to be influenced by it. I must confess that even after years of being physically incapacitated by a brain bleed, I still fantasise about just such a scenario for myself.
In my fantasy, I’ve even figured out a logical rationale to make it possible. I imagine the neurones connecting themselves in my brain; some coming from one side, and some coming from the other, like two halves of a bridge being constructed. In this vision, on the day those two halves of the bridge meet in the middle, I will suddenly be able to walk properly again, and I will suddenly be able to use my right arm as I once did; BINGO! It’s a very appealing image, and I’ve had one or two vivid dreams of walking normally. Sometimes, just after I wake up, I lie very still and hope that this miraculous moment of neural connection has happened while I slept.. ..alas, my body has not responded yet, but maybe one day, who knows?
A more realistic portrayal of a physical calamity was in the hit TV show BREAKING BAD. After one major character is gut-shot by baddies, he spent the next TV season dealing with the unglamorous physical and emotional effects of this in, I thought, a very believable way. Unlike John Wayne in an old Western movie, who shrugs off the gunshot (’it’s just a flesh wound’) this character, and those that cared for him, had physical and psychological effects to deal with for the better part of a year or more. But that attention to physical and emotional detail is rare.
In the recent spate of Superhero movies, for sure any freak accident or medical emergency will actually have an UPside. Nuclear accident? Gamma radiation? That’ll be superpowers all ‘round, thanks! There is also the hollywood/Marvel-comics notion that if you lose some abilities, you will be compensated in other ways. It is a very appealing idea, but I have not so far seen that myself yet. I’m physically disabled, so where are my psychic superpowers? Or the ray that shoots from my eyes?
Being professionally involved with the construction of cinematic fiction myself, I’m led to ponder; what ACT of MY movie does this physical calamity represent? Is this the end of ACT 1 of my story? Where I suffer a life-changing setback and then rally? Or is it the end of my 2ND ACT; my ‘low point’ where I am learning one of life’s lessons? (maybe the stroke was actually about my own hubris, and so forth.) Or, is it the end of my 3RD ACT; where I have learned to adapt to these changed circumstances?
If this ordeal of mine were to be repackaged as a TED talk, there would certainly need to be an affirming life lesson. In my early days in hospital, I was made aware of one of the most viewed TED talks of all time, which was given by a neurologist who herself underwent a stroke. Just like me. At times, I could relate to parts of her story, and her step-by-step descriptions of the shutdown of her body and mind as the stroke began, and the strange mental detachment, curiosity and calmness during what should have been an utterly horrifying event, could have been describing what happened to me perfectly.
But she left me behind in the later part of her talk, where she described a process whereby the stroke turned her mind turned inside out, and she became keenly aware of the universe, like some sort of magical Dali Lama. If I sound jealous, it’s because, quite frankly, I am jealous. My physical therapists are quick to point out that no two strokes are alike, and comparisons are useless. So I must accept that this woman became imbued with the super powers of a spiritual Yoda, attuned to life’s mysterious beauty, while all I got was a crippled clumsiness, and attuned to the humiliating potential of my own spastic incontinence. Her TED talk hinted at the idea that having a stroke was the best thing that could have happened to her, following that time-worn narrative device whereby an ordeal is a blessing. It was the TED talks version of the familiar Marvel comics story; stroke as super power. The TED talk of my experience so far would only offer the idea that a stroke is an ungainly slog through physical hardship; a gruelling psychological marathon.
What I’ve been dealing with recently, is that my medical caregivers (my doctor, my physiatrist, and my physical therapists) who were all previously my cheerleaders, have been gradually changing the message. Each of them now coaches me that I have to accept the likelihood that I will be physically incapacitated to some degree for the rest of my life, and move on with an adjusted set of expectations and build a new life around my diminished physical capabilities. When the people who were previously on the sidelines cheering me on: “you can do it!” have shifted to telling me: “face it, you’re a cripple!” that has been a very difficult adjustment.
Of course, I do see that there are certain times in life when ACCEPTANCE is the wisest thing that you can do. There are moments when refusing to let go of something from the past will prevent us from enjoying life in the present and future, and make us intolerable to be around. I do understand that. So although this is been very difficult, I don’t resent these caregivers at all, because I understand they are trying to ease me into an awareness and acceptance of my changed circumstances. I know the statistical realities; that at a year and a half, most of a stroke survivor’s recovery has already happened, and any advances from this time forward will be incremental at best. But I am not yet ready to give up on working on my recovery. Not just yet.
However, this professional assessment by my caregivers means that medically, the official position is that I have hit my PLATEAU. The P-word is a dirty word in my situation, as it means there will be no more insurance coverage for my case, because it’s considered a lost cause. From this point forward, I’ll still visit my physiatrist about 3 or 4 times a year, so he can see if there have been any changes. If any of those ‘neural bridges’ that I fantasise about do actually connect in my head, my case may be reopened. But shy of that sort of development, it is ‘case closed’ from the medical insurance company’s point of view.
The medical insurance system in the USA is built around a certain model; a case that takes a certain amount of time and gives certain quantifiable outcomes. After an accident, whether a broken leg or even a serious car crash, there is a period of surgery, intensive care and physical therapy, and about a year and a half to two years would resolve most cases out there, because your case is either so bad that you die on the one hand, or recover on the other. In most scenarios there’s a clear outcome after a ‘reasonable’ amount of time. Pregnancy, cancer, hangnail, skiing accident will all be resolved, or at least have a resolution in sight, after a year and a half. But with a case like mine, where recovery may take 5–8 years, or even more, the system is not so good.
If 15 people break their legs in exactly the same spot, their cases will all follow a similar path. Not so with strokes, which affect a myriad of different parts of the brain and therefore have a variety of unforeseen consequences. My understanding is that each of our brains is wired differently, so that even if you and I were to suffer a brain haemorrhage at EXACTLY the same spot, unlike with our our similarly broken legs, the consequences of our brain injuries may be vastly different. My doctor explained that the reason that my stroke has been so serious, despite the size of the haemorrhage being moderate (I’ve known others with a bigger bleed to be back at work in 6 months) is that my bleed happened in a particularly delicate spot (Imagine a mid-sized bomb explodes in a city but does untold and far-reaching damage because the location of the blast was the power station.)
At this point will I recover or not? Nobody will categorically say NO (stroke survivors sometimes do recover even at 8 years) but at the same time, insurance companies do not want to sink more money into a case that has no end in sight; it throws off their calculations of the odds (what you eventually realise is that bookies essentially run the medical industry). When the insurance companies shut off the spigot, many stroke survivors simply tap out; when even the experts tell you to accept it, it’s hard to stay enthusiastic. So it’s no surprise to me that STATISTICALLY there’s less progress after about a year and a half to two years, because that is when they stop providing the resources to heal, and it becomes something of a self fulfilling prophecy. So, now that the insurance/medical complex has filed my case under ’no more money’ (for now anyway) I’m at the point where I must research all sorts of alternative cures. So if you hear of me buying vials of armadillo urine, or having my chakras rubbed and my aura massaged etc, that is the reason why.
In this montage that I’m living in now; doing my therapy exercises, dealing with insurance issues, and clumsily drawing with my left hand, it’s difficult to know the context. Is it like a JACKIE CHAN Kung Fu workout-montage, before he triumphantly rebounds and opens some whupass on his foes? Or a transition-montage, like at the beginning of a movie like THE WRESTLER, where MICKEY ROURKE ends up a broken-down old has-been, and stays there? When life gets hard or inexplicable “Everything happens for a reason” is a phrase that often gets bandied about, to help make sense of it all, but I’m not so sure if real life works quite like that. Of course, I’m never sure of anything, but I often suspect the exact opposite; many important, wonderful, and even catastrophic or terrible things happen for no reason at all.
Even if there is some cosmic reason for this situation, or some nut of wisdom to grow out of it, so that one day I’ll look back on it all as a ‘blessing in disguise’ (and I’m the first to admit the appeal of that idea) I am in still the middle of this story, and therefore don’t have enough perspective to decode it all yet. So I just have to battle away slowly, one day at a time, and focus myself on pushing as hard as I can to get where I’d like to be, without lapsing into bitterness if things do not go as I would like. I’ve always found that maintaining this balance to be the trick to living a happy life, so in a very real way, nothing at all has changed.
Originally published at www.james-baker.com.