Author: Simon Bostic

Pain, Pleasure, Procrastination… And then there’s Paris

Pain, Pleasure, Procrastination… And then there’s Paris

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In the last 2 weeks, there has been pain (a lot – both emotional and physical), pleasure (a lot – mostly emotional and quelle surprise not much physical) and procrastination (a lot:  had a difficult essay to write for a course, not to mention a bad dose of blog-block to boot.) Taking my own advice in line with what I wrote a few posts ago, instead of running from it or trying to ignore it, I just allowed myself to experience the pain, allowing myself to “just be” with the powerful emotions and physical sensations. I didn’t judge them. I tried to do the cuddly stuff you are supposed to do, like be kind and compassionate to myself – a bloody hard job with my inner critical Cruella de Ville always lurking in the shadows. Buddhism teaches that pleasure too shouldn’t be judged or dwelt upon too much. Like pain, pleasure is impermanent and will  disappear or morph into something else (pain again?) So I enjoyed it but remained detached from its Siren call, and the risks of shipwreck on the rocks of disappointment. I hope you will also indulge my self-congratulation at the skill with which I was able to quietly observe and just allow myself to be with my procrastination…. It worked like a charm – I avoided writing that terrifying essay or thinking about my next blog for days.

In the end it was sheer time pressure that ripped me from my literary paralysis. Time had run out before we went off to Paris this morning and the pressure of not getting there – with all the associated hoo-hah of packing two oxygen concentrators (one for walking and one for sleeping), materials for changing wound dressings, stacks of medications … oh, and let’s not forget the clothes!

Sitting in the stalls at the Royal Opera for a change!

With chronic illness, it’s just a fact of life that there are plenty of natural opportunities for riding life’s emotional roller coaster and, in spite of all the tricks, tools and CBT techniques in the world, it’s the devil’s own job not to end up in the front carriage every time. On the one hand, I was excited about how much more I could do at the gym and could really feel my muscles again thanks to a new, smaller oxygen concentrator which delivers my magical elixir to me while I move around. I am constantly amazed at how kind people can be, especially the NHS physios who work with me (see clip). The sun shone. I had been to the park with friends and also to the theatre four times to see shows and operas. The rose in my garden was smelling like heaven and my wonderful cats and husband (or my marital life partner as I call Christopher much to his annoyance) are all the joy and love anyone could wish for (mostly)… What could go wrong? How could this high ever fade when these joys are around me constantly?

The curtain call at La Boheme

Well, two days later, when I say I really felt my muscles again, I mean I REALLY FELT MY MUSCLES! Never had my quads ached like this before. I had simply overdone it on squats – and they never were my favourite anyway! Added to this (and worse) was the recurrence of the long-standing pain caused by the open wound I have over my coccyx. This is a hangover from the huge operation I had last October and the pain has returned with more ferocity and fury than ever. The wound had almost healed and the pain much subsided, so its sudden return to its old ways plunged me into depths of fear and a sense of betrayal that I can’t even describe. Added to all this I still feel very raw about the state my lungs have got to and what this means for the future.

Yet I got up and still went to my course workshop for most of the weekend. The pain abated (with the help of very strong pain killers) and I carried on going to the gym and did my voluntary work. I stuck with it. At least I now had a great excuse for not doing anything else as I was back to just getting through each day. Blessing in disguise, eh? And once more, along came the trusted Phoenix and once more deposited me back on some kind of level ground. I regained some equilibrium. Still I hate the oxygen concentrator and the plastic tubing and how it makes my cheeks look really chubby. Mostly, when I have found myself at a very low physical or emotional ebb, somewhere in the gloom of depression and upset, I remember all the things I am looking forward to and how very lucky I am and how precious life is to me now. I have had to slow down bodily so much to see life’s beauty – but I do see it and sometimes – just sometimes – when my mind slows down enough, I appreciate it too.

Today is my 47th birthday and I find it hard to believe I made it here, especially given the last few years. People ask me how I carry on – I don’t know. Perhaps it’s all magic and miracles after all. I do know that whilst accepting and allowing, I do also try and remember the things I do love in my life and how lucky I am. Everything is always changing – “No man ever steps in the same river twice, for it’s not the same river and he’s not the same man”. Who knows, I may just catch myself off guard and write that darned essay.

Next week!

“However bad life may seem, there is always something you can do and succeed at. While there’s life, there is hope.” Stephen Hawking

What Goes Down Must Come Up

What Goes Down Must Come Up

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There are only a few things about myself of which I can be truly certain: the first is that I am not in any way one of those people my first ever therapist referred to as a “level earther” – someone who lives their lives on a more or less even keel, with few ups and downs, even in the face of life’s vicissitudes. With me around, it’s likely to be a roller coaster of a ride, scaling dizzying heights and plunging to great depths with face-wrinkling corkscrew turns, unexpected stops, drops and loop-the-loops aplenty. The second is that you can rest assured that regardless of how much I get thrown around – no matter for how hard or for how long – I will cling on and for just about as long as it takes and probably cackle with laughter the whole way through.

It’s just always been like that with me. In a 20 minute dash from the womb to the world (evidently I was in no mood for hanging around waiting patiently to face the world that awaited), I shot down that channel inside the frenetic and intense rollercoaster that was my Mother so fast I almost plunged head first into the toilet bowl at home. Whether fleeing from the craziness of captivity inside her womb at the earliest opportunity or impatiently rushing out to take on a world that had a hell of a show ready for me – I arrived red faced and screaming, if the family myths are to be believed, surrounded I imagine by faces crumpled with worry and doubt as, now knowing I was Simon and not Kate, in their view my fate was sealed; I had a rare and lethal immune disease that was already killing my brother Andrew, still only 18 months old and which would almost certainly mean that I also would stand little chance of surviving into adolescence. It was gonna be a wild old ride ….

And the rest as they say, is history…

And I’m still here. Enjoy!

Just me -Unadulterated?

Just me -Unadulterated?

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I couldn’t publish what I had originally written this week. It needs air and to be free to breathe a little before I send it out into the ether. Then, I was  uncertain what to write – which is crazy given everything I want to say. So instead, speaking whatever came into my head seemed like the next best thing to do. The clip below is me this morning not too long after I woke up. I wouldn’t say that it’s me at my best. However, it is me at my most unfiltered. Whatever it is, whatever I am in it and however I seem, it depicts a version of me coping with the sort of physical and emotional experiences that greet me some mornings, blessed as I am with a number of chronic and/or degenerative illnesses.

In a word, I didn’t ‘arf feel like s**t – not just physically but emotionally. By giving in and just allowing myself to feel the emotions, letting it all breathe (literally) for a while, I felt a lot better and after a short while, I found more strength to get on with the day. In bygone days, I would have smothered feelings like this and pushed them all back in by powering on and diving straight into “busyness” – but as I am physically incapable of that these days, I have no choice but to try it a different way now.

I woke up feeling like I’d been drugged, been out on the tiles all night and then fallen face down on those very same tiles, smacking my head in the process. As my days of being out on any kind of flooring are now just distant memories, the only simulacrum of past days is that I had taken a fair old whack of prescribed codeine yesterday for the severe pain in my backside caused by my very own stigmata. The story of my Action Man butt is from the most recent chapter of an entire saga I could call, “The Abominable Abdominals” and is luckily for another day. Suffice to say that this wound is the solitary opening in that entire region of my body, and caused by the major surgery I had in October 2017. It is smack bang on my coccyx causing more than a modicum of discomfort and what’s more, its constant oozing needs daily care and sterile wound dressings. In this way, I am like a little walking, talking volcano with not much walking, but a lotta talking: venting hot air and fiery liquid from the little geyser on my behind… (oh, please … get a grip!)

I woke up feeling very low. But despite rambling aimlessly and sounding as if I have lost most of my teeth, by the time I had finished “talking to you” – that is, after I felt I had made some kind of connection, albeit a very one-sided one – I did feel much better.

IMG_20180613_155942_780

I have felt pretty low this entire week and partly this is because it suddenly hit me how much I have aged internally during the last 5 years of chronic pelvic inflammation and sepsis which has devoured all my body’s resources, robbing my bones and my lungs of much needed nutrients and sustenance. Consequently, there are many people in their 70s and 80s who have better bones and lungs than me. I have even SHRUNK and lost 1cm in height – seriously. I mean, HELLO?? Talk about careless. I can’t even smell the roses in my own damn garden. These days, I am an even more sure fire certainty in an audition for Disney’s It’s A Small World!

What I mean to say is: no matter how low you may feel at the beginning of the day, it doesn’t mean that you will feel like that all day – just taking it minute by minute without judging can make it seem better – and often it actually then does get better.

I am now wri20180615_195857ting this from a gorgeous place on the shore of Bewl Water with a wonderful view out to the reservoir, breathing in fresh country air and watching owls fly by in the fading twilight. And I feel great. I feel frightened and have pain just like I did this morning but I made it here and it’s ok.

I also wish to tell anyone out there reading this, especially my fellow warriors who are suffering and are in physical or emotional pain and perhaps are trying to ignore it or push it back down, that sometimes it is best to let it go and let it be just as it is. The energy it takes to hold something back takes a greater toll than just letting a little of it out. On some days, showing great strength is to say to whatever foe it is that is hurting you, “you’re too much for me just now. I will try again tomorrow ….”

And tomorrow, you may find your foe is not quite the ogre it seemed and who knows, it may even have disappeared into the night …. And if not, you will be fortified to go once more into battle.

 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow.” Mary-Anne Radmacher

Good night, fellow warriors all.

The Elixir of Life – Concentrated

The Elixir of Life – Concentrated

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elixir_of_lifeIt’s my desire and ambition to be as real as I can be as I write about my experience in this blog. This means that sometimes, it ain’t gonna be pretty!  But then, chronic illness, pain, surgery, hospitals, wounds: none of it is especially pretty. Sometimes people only want to hear the inspiring and positive stuff, the success stories against an invisible foe, fought out on the battleground of your own body. But, there is no good without the bad, no day without night, no yin without the yang ( …you get it, I know!) There are victories to be had in this silent war, both mental and physical, when I feel I am winning and that my inner troops are strong, armed and ready. But I wonder perhaps if really, there is no winning and no losing. It’s just all a process (I am loathe to use the word, ‘journey’ lest my own eyes roll) where some days feel good and some days, not so much. With chronic diseases which also deteriorate over time (there he is again, my old nemesis Time), the good days seem to get fewer, the “not so much” days, become more frequent and in turn become the good days.  And then you really begin to learn what rubbish days look like. This seems like a good time to stop judging days.

Today is just one of those “not so much” days. Actually, the last few days have been a bit rubbish, both physically and mentally. On such days I try and give myself a break from sucking that old marrow too hard. I may try and lick a little if I can or imagine what a lot of marrow sucking I will do in the future. Mostly I try my best to allow things just to be, to ride the waves of uncertainty that my situation brings and patiently wait for the storms to pass. If I can, I try to avoid g20180523_141016etting trapped in the predictable whirlpools created by fear and depression. I may sit outside to be closer to trees, suck in the fresh air, stare at the clouds and the sky and actively listen to birdsong which I find immediately soothing. Many of my past travel adventures have featured as a key objective going in search of wildlife and nature’s splendour. Now, tottering about in my local urban park, witnessing the changing of the seasons, sitting surrounded by squirrels and listening to the birds brings a sense of escape and relief. For me, Nature is one of life’s great elixirs. Yet these days, to taste this requires much more effort as life’s most vital elixir, oxygen is no longer so readily available to me.

 

It was not my intention to introduce lung disease at the start of my blogging life, but it is the part of my general condition which causes me most difficulty on a day-to-day basis and is exceptionally limiting both in terms of mobility and I am afraid to say also, mortality. I have spent so long trying to hide it – from myself mostly. I hate this disease and I am ashamed of it (for what reason I am not sure). Denial has been a recipe for survival but one that has now ceased to be useful.

Technically, I have Chronic Obstructive Pulmonary Disease or COPD – an umbrella term for a number of different lung diseases and it normally affects much older folk than I. (I recently heard of a fellow sufferer who gives a more meaningful explanation of the acronym: Can Only Plan Daily. Need I say more?) COPD is a truly appalling disease. It’s like having a fist squeezing the top of your windpipe while you suck in air through a straw or having an extremely heavy animal sitting on your chest! On a bad day when I am struggling to find any breath, it is as if I am stuck inside the crater of a volcano searching for a way to escape, gasping at any traces of oxygen remaining amongst the unimaginable heat, rocks, magma and noxious gases. Even on a “not so much” day It renders me extremely breathless at the drop of a hat (literally, on some days – oh, like today, actually – I would barely be able to scoop my hat off the pavement, even if I were to venture onto the pavement at all on such a day). It forces me to take a well-deserved rest two-thirds of the way up the stairs in my own home, providing a welcome opportunity to look through the rear window at the trees and plants in the back gardens (and a little twitch through the blind at the neighbour’s place to see how they are progressing with their renovations – blimey, get ON with it).

My lung function is now at about 17% of the predicted function it should be for a man of my age and (diminutive but beautiful) height.  Why it has taken hold and progressed with such ferocity in my case is, like many aspects of this brutal disease, unknown. But in all likelihood, it is because it is just one of my “co-morbidities” – a term helpfully used in medicine to refer to the collection of life altering (and threatening) diseases someone has in addition to the one you may be talking about at the time. (It’s a jolly term, isn’t it? Gives me a warm sense of unity and harmony – I feel relieved that my original solo-morbidity is not so alone but instead has companions to depend on and feed off and keep it from the deep, dank wells of loneliness.) This original lonesome morbidity, the one I was born with, is another mouthful: Chronic Granulomatous Disease or CGD for short, the real underlying demon here. Insidious and underhand, this genetically inherited immune disease causes my bone marrow to produce faulty white cells, making them shoot blanks when it comes to fighting infections. Affecting 1 in 250,000 people, it is potentially lethal and its effects are variable, unpredictable and generally just nasty. It is the cause of most of my issues in one way or another. It is the serious and chronic inflammation inevitably caused as part of this gift from the universe to me of this gorgeous and extremely rare primary immune deficiency that is the likely explanation for the fast deterioration of my lung function in recent times.

Last Friday, following a batch of recent tests, I was advised that my lungs could no longer find the oxygen they need in nature – at least while walking. I would need a new elixir, oxygen concentrated from the air by a machine. So now, as a fashionable addition to my little-man-about-town look, whenever I am walking along the street the public at large has the privilege of seeing me with a tube of plastic hooked behind my ears and down across my cheeks to meet in two cute little nasal prongs which sit in my nostrils (and make grooves in my cheeks) giving me supplementary oxygen as I go. The oxygen comes from a portable machine which concentrates the oxygen from the air around us and sends it down through the tubes into my nose. I am sure people will not even notice. I don’t ever remember seeing anyone on oxygen in the street or out and about at the theatre or a concert or anything, so maybe I just didn’t even notice them myself. Or if people do notice, I am sure they will absolutely not be looking at me or at my nasal cannula (or awkwardly not looking) and thinking, “Oh my God – I wonder why that bloke has got a plastic tube up his nose” or “what’s the matter with him? He seems too young to be on oxygen” or worst of all, feeling sorry for me.

I have taken it out for a spin (it comes with its own little trolley) – and it wasn’t as bad as I thought it would be and I even towed it up a hill with a friend and her pooch.

IMG_20180604_124730_534I am determined that in spite of it all, I will go to the concert at the Barbican tonight, with my concentrator on its trolley. At least (and I alone can start a sentence like this when talking about my own misfortunes) – at least I will now not need to worry about having to justify to people why I am using the disabled loos. I have moved from the murky realms of invisible disability to disability. At least sometimes. And I can use my portable oxygen concentrator, weighing 4kgs or so, as a portable ersatz dumbbell and do a few bicep curls while on the go. See? Not so bad after all. That’s what I call making the most of it. What is it they say? Every silver lining has a cloud?

For more information about my life with CGD and my early Bone Marrow Transplant take a look here:

 

 

Time … that old b******d!

Time … that old b******d!

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Well, the time may be now. But what is this thing called time? It rules our lives like an invisible, omnipotent god. It makes a more than regular appearance in our everyday language. It heals all wounds (… apparently. I’m still waiting … but that’s not for today.) It waits for no-one. You can be ahead or behind it. You can be in the nick of it, race against it and you can have it on your hands. It is our past, present and who the hell knows what time may mean for any of us in the future. When you are young, it seems there’s plenty of it ahead but then it starts to fly… Old Father Time’s tick-tock-tick seems for all the world to set a faster pace now than before. What we thought once was our friend becomes the arch-enemy we struggle to defy, subjugating ourselves helplessly to the inevitability of its passing.

There are days when I throw my hands in the air in desperation at the passing of time. Because that old bastard, Old Father Time, sucks. As the name of this blog suggests, I also suck. I suck out all the marrow of life. I really do – I try my best: past, present and future. I stick up my finger – ruefully – at my life’s seemingly endless bad plot lines (you couldn’t make this shit up, believe me) and try, in vain usually, to re-write the script (the author is a stubborn old … oh, never mind). I suck, I have sucked and I will continue to suck! But, let’s get real for a second here, sometimes I suck at sucking. Because as I suck, it sucks too. Time sucks. Time has sucked, does suck and will probably suck in the future too. As I am busy sucking out all the marrow of life, that bloody old bastard is doing the same thing to my life. To me. To my body – as if chewing and gnawing away at my carcass, at my very being, until my bare bones are tossed into the dirt stripped, exposed, unprotected. Such is the helplessness I feel at the mercy of the cruel, degenerative diseases which pursue me so relentlessly.

Both physically and mentally, it is painful, frightening and tiring. Tick-tock-tick-tock goes the Grandfather clock: time is vanishing before my very eyes. Die Zeit geht dahin. The worst is, no matter what I try, like Strauss’s Marschallin, I cannot seem to stop all the clocks.

Yet, I go on sucking – as hard as my lips and cheeks will allow.

The time is now

The time is now

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I am not sure why it has taken me so long to get down to writing this first sentence. I have always wanted to get the most out of life that I can, in whatever way I can, while I can. I have been threatening to start a blog for years but I always put it off it as a project for “the future” somehow maintaining the illusion that I had endless time ahead of me yet. But it seems time is in short supply now, perhaps more for me than for most. The time to write is now.

I wanted my future to be longer. I didn’t want to write out of a sense of urgency, a slave to life’s unrelenting frogmarch. For me, it was important to start writing before the opera of my life (or should that be soap opera?) reached the final act. There was so much to say. I needed Five Acts – the show must go on, and on, and on! Yet here I am, the curtain is about to rise on the final act, that proverbial lady with an elevated BMI is warming up to warble. The orchestra and the stagehands are already on overtime, the lights are overheating and extinguishing themselves one by one with a little puff. The curtain must come down sometime and of course, the show cannot go on forever. The time to write is now.

I know less about my future now than I ever did. There is little that medical science has left for me now: curative treatments are non-existent and even standard treatments have to be administered conservatively to prolong their efficacy. What I do know is that the time to write is NOW.

Yet even these jarring revelations about my deteriorating health may still not have been enough to kick-start the process but for several other recent events all of which together sounded like the universe whispering in my ear, “Do it. Do it now. The time to write is now”.

A few weeks ago, I was interviewed for two programmes commissioned for ITV and the BBC, both celebrating the 70th anniversary of the NHS through personal stories. In 1973, I became the first person ever to survive a bone marrow transplant from an unrelated donor. The transplant was pioneering and made medical history. The breakthrough would never have happened without my mother and her battle to find a cure for the primary immune deficiency I was born with and which had just killed my brother at age two and a half. The search for a donor and my miraculous survival was followed by thousands across the world thanks to blanket coverage by the UK media at the time. Being asked to take part in these programmes so many years later made me think that there might still be some interest in the story and about what has happened since.

My transplant success was the catalyst which led Shirley Nolan to start her search for a donor for her son Anthony, building on the work of my mother and ultimately leading to the establishment of the donor register which now bears his name. The power of social media was brought home to me when Anthony Nolan recently shared my Instagram post about the 45th anniversary of my transplant on their own feed. As a result, people commented online that my story was an inspiration to them and it gave them hope for their children who are having or have had transplants. I got more than one hundred likes in response to a Facebook post featuring a picture of me as a toddler with my donor. “Time to start writing #doitnow” wrote a very good friend to me that same day.

A similar message came from an ex-colleague I had not heard from in years who had been very poorly lately. She had followed my recent trip to Australia and New Zealand on Facebook from her sick bed. She touched me deeply by telling me, “you were a bit of an inspiration from afar” knowing as she did what it had taken me to get there following my most recent bout of major illness and surgery.

And finally, in the same week I was contacted out of the blue, also on Facebook, by a good friend of my mother from years ago, who worked with her and supported her throughout the time my brother and I were so sick. I am finding it very cathartic to reconnect with people who knew my mother and have first-hand accounts of what happened to me during those early years. It is part of my own process of making my peace with some of the events that have changed the course of my life.

So, universe, you tell me it is time to get writing. But it is my show and I say it’s all about quality not quantity. And WOW, what an amazing show it has been. No, wait: what an amazing show it still is, even if it has been – and still is – a bit of a melodrama at times: colourful and exciting, inconsolably sad and hysterically funny, unpredictable in the extreme, scarily and achingly painful, frightening and overwhelming. Most crucially (schmaltzy moment coming), I am lucky that my life’s script has contained an abundance of joy, love, friendship and laughter. These are my Four Elements, through which grief, pain, illness and death are somehow transformed into a determination to defy expectations, to survive against the odds, smile in the face of adversity and make this show run.
I don’t know how long the curtain calls will last, or where this all will lead – I know there is much to do; there are places yet to be travelled, people to meet and learn from, operas and shows to see. There’s a blog to write. Perhaps you may join me in making the most of it all and sucking out all the marrow of every last bit of life. There is no time to lose. The time is now….

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