Content warning: This is an account of real life. One illustration and one story contain a well-known swear word. Wince if you must!
P.S. I cannot count. There are actually
threefive swear words in total.
This post has nothing to do with swearing, by the way.
We do many things to establish our reputations and maintain them. It is a truism that our livelihood often hangs on our professional reputation. What exactly is our professional reputation made of?
Primarily, it is the ability to do the job for which we have been employed or contracted. If we do this repeatedly and well – and the right people notice, then our reputation grows. We become reliable, sought after, and successful. Effort, determination, stamina, skill and ability and some intrinsic quality that no one else has are what bring the success; and yes, that success and the good reputation are both earned and deserved.
It is a very great pity, having achieved such success, to have it taken away because of an accident or illness, or both, as the following story shows:
João generally thought and moved twice as quickly as I did.
We had just collected her six new suits to match her career success from the tailor. On the way home, some bastard rear-ended our little Austin 1100 at speed on a dual carriageway.
I was driving. João suffered severe whiplash. She had two procedures, lived on painkillers, and worked herself almost to death during the next three months. She was not getting better.
Her second-opinion neurologist said the accident had triggered the virus responsible for chronic fatigue. He recommended she take a year off work to recover and “preserve her professional reputation”.
I said, “I will look after you, darling, for as long as it takes”.
You can count how long it has been since 10 February 1992, if you like.
My dad sent us off to spend a weekend at Imire, a wildlife conservancy. We touched horns on live rhinos and came back with a tanned Zebra skin, which Topaz loved more than my shoes.
In case you are wondering who Topaz was, and what my shoes have to do with anything, you should read my previous post about our Labradors. Rubi was his brother, from the same litter:
Quite suddenly one day, João could neither stand nor walk. By then, four years later, we knew João had multiple sclerosis. Fucking MS.
We had dismantled our four-poster bed in preparation for a paint job the next day and slept on the mattress on the floor.
That night, Rubi died at João’s side of a ruptured heart. His sleeky coat and stiff body were so cold to the touch in the early morning.
I took the day off work to deal with the post mortem at the vet and cremation at the local incinerators. It was my birthday. We had my favourite spaghetti bolognese for dinner, and wine. I was 32.
As always, my life is not complete without mentioning translation or typing the word at least once a day:
We sued the bastard who caused that accident.
João cashed all the money. In the privacy of our own home with her black leather jacket and Yoko Ono sunglasses on, she threw it in the air as if she had just robbed a bank.
She used half the proceeds to buy me a home computer. My translation speed doubled overnight, and became even faster as I learned to think and type at the same time. We also printed pictures of colourful butterflies, taught ourselves how to make graphs with our domestic budget, and played solitaire together.
I still had two jobs, but much preferred the one at home at night and on weekends now.
We were at the forefront of technology, five years before we got our first modem.
When life is tough, you can either be miserable about it, and shoulder the full weight of the doom and gloom, or you can survive despite all the curved balls with a sense of humour, preferably on a daily basis, simply to counter all the serious things. The operative word here is “daily”, because when you really need levity, humour comes in handy:
We read all available research on MS at a feverish pace for several years. We embarked on numerous mostly alternative remedies and treatments. We experimented with vitamin combinations and herbal concoctions with funny names, including production for two seasons of our own chronic pain medication right in the middle of our front garden. It was so obvious, no one saw it.
No meditation, mantra, energy, diet or therapy, however, was of any use whatsoever in dealing with the alternating bouts of constipation and “blasts from the past” suffered by people with MS.
After a particularly spectacular accident which clearly rendered João embarrassed beyond belief, I was on my hands and knees on the bathroom floor doing massive damage control.
She laughed – and cried – and laughed all over again when I remarked that I always knew she was full of shit.
As I re-read the above story – written a little over two years ago – which records events spanning years in what seems the distant past and certainly all of which happened before we emigrated to Portugal just over seven years ago, I cannot help being baffled as to how normal our life together seemed then and how far from normal it seems now.
Multiple Sclerosis is cruel. It robs the Person with MS of abilities; it takes away freedoms and so many hard-won and simple pleasures; it destroys fine careers and fine minds. MS is devious. People with MS never give up; they are brave; they take the hard road towards acceptance of their disease; they accept it and elect to remain joyful in determined attempts to slow its progression, to minimise the impact it has on their lives, to find a cure. There is no known cure. In exchange for depression, frustration, helplessness and an overwhelming sense of not being good enough, they opt for patience – for what alternative is there?
Their bodies betray them every day; their bodies do their damnedest to degrade them and rob them of their dignity, as treats such as dinners out at restaurants are inevitably replaced by the much less savoury necessity of incontinence wear and those hateful inspections for bedsores. MS is silent; it never answers the question – Why? And yet People with MS keep asking it. They never stop asking it. And when they do stop asking why, it is only because they have decided it is easier to supply their own erroneous, stupid answer which has no basis in scientific fact.
I have said “they” while thinking mainly of João. This is not a cop-out. This is no psychological trick we play on ourselves. You know the kind I mean: the one where we say things like “You get so frustrated…” when what we really mean is “I get so frustrated…” I know about that whole ownership of feelings deal. So does João. I specifically used “they ” in the paragraphs above because I know from experience with others that what is true for João is true for other People with MS. We know it. They know it. MS gets hold of you and does not let go.
MS is a thief. It has robbed João and I of the deep, passionate, expansive joy of being lovers for years. Multiple sclerosis has stolen by corrosive degrees the very thing that sustained us; it has eroded the passion, hollowed us both out; the outer casing is cracked and does not hold. MS has made sure of that.
Oh well, at least you have great memories, people say. Not exactly true. I have great memories. I cannot be sure what memories João retains. They are scrambled and, as so often happens, her speech betrays her. She cannot always express in words the thing she is alluding to. What she is saying and what is happening inside her mind are often two vastly different things; to my mind, they bear no resemblance to each other at all. This makes even the most casual, basic conversations quite tricky for me to navigate. I avoid steering the conversation. I have learned to minimise the verbal and other signals I emit as to “what I want to hear”. We seem so often to talk at cross purposes about the most trivial things. Her world and my world are no longer the same place, and have not been for about four or five years.These days, this hapless state of affairs is more acute than ever.
Yet we are connected, I suppose by that thing called love. Yesterday while I was putting her to bed we had an exchange (which came out of nowhere) in which we both admitted that neither of us had “anyone to talk to”. I pointed out that it was indeed a sad fact, but that it was wonderful that we could admit it to each other, and we both had a good laugh about that.
The good memories are mostly not mentioned. For João in particular, talking about them is a cruel reminder of the implacable present. For Valentine’s Day, I decided on the scrambled egg on heart-shaped toast. As I prepared this culinary delight, the phrase “scrambled love” occurred to me, but I did not have the heart to say it out aloud. I think it may have had to do with the fact that scrambled eggs in our household have always been referred to as “sexy scrambled eggs” (It has to do with the cooking method, nothing else!). That was until a while ago. I asked João whether I should make the scrambled eggs “sexy”, and she said no. I made them sexy anyway, but presented them to her as “unsexy, just as you want them”. The crazy part is that the eggs have been unsexy for years, and all we have is scrambled love in fragmented fits and starts.
Tomorrow will probably be the same. I do not ask why. I ask how long. How much longer…?
There are two stories left in Scatterling. I will be blogging them soon, since it is time to move on to other things. The option to purchase the real book on Amazon has no time limit. As I have said before, it’s a great colouring book. Click on the picture below, if you like:
Upon reflection, much of the above post could be thought of as Part II of Caring is scary on the same subject which was written on 16 October 2012.
© 2016 Allison Wright