Why do you come here? We’re never going to get better.
I got home from work and the usual commute at about seven. It was one of those still dark evenings in the transition from winter to spring. After hanging up my coat in the entrance hall, I walked into the living room shouting a hello to my wife in the kitchen from which the sounds of dinner being prepared could be heard. An answering hiya floated back from a room away.
Our youngest child, who’d just crested six months, was sitting in the middle surrounded by toys to play with or teethe on as the mood took him and with scatter cushions carefully placed around to soften the blow to his head on the fully carpeted floor as he still occasionally tipped over.
When babies who’ve just learned to sit up go ass over tit, there’s undoubtably a comedic aspect to it. They lean back just that bit too much and suddenly their arms flail around desperately to regain equilibrium but they inexorably keel over but always end up with their two baby feet stuck up in the air. When you’ve done the cushions thing, you can’t help but laugh.
This night was different. That silent alarm bell we all have when it comes to our kids went off straight away. He was sitting with his legs splayed wide apart but bent over as if asleep sitting up. The whole look was wrong, just not right. Not him at all. I scooped him up and tried to wake him up but he wasn’t asleep, he was unconscious, his breathing shallow, laboured and slightly wheezy.
Any difficulty with breathing is a medical condition red. We buckled him and the older kids into the back of the car and with my wife tending him, I put the boot down and pushed every speed limit getting him to the nearest hospital ten miles away.
It was his first asthma attack and that was our crash introduction to the wonderful world of nebulizers, inhalers and a lot of other medical technology and buzz words we’d rather not have gotten to know. He’d some history on the emergency medical front.
When he was born, he’d gone within hours into the emergency ward because of a chest infection. An obviously junior doctor failed to hit a vein after three tries over a screaming newborn so I gave him the look that said calm down and do it or get out of the way and I’ll do it myself. I tapped a vein for him and it duly popped up, so he finally hit it and they fitted him out with a cannula.
The next problem was getting oxygen into him. Instead of an oxygen tent, they had a transparent Perspex box with a cutout for the baby’s neck which could be placed over the head of a prone baby. The problem was the cutout for the neck was designed for tiny babies weighing the same as a bag of sugar, not ten pound two ounce bruisers like him.
It was too small and pressing on his throat and while the experts were busy scratching their heads wondering what to do, I took the box outside and used the saw widget on a Swiss army penknife to enlarge and then smooth off the edges of the cutout. In passing, he’s still the baby weight champ of what is a very large extended family, though he’s definitely on the lean if not skinny side.
Asthma tends to come in the company of that other curse; eczema, and in his case it did. It’s a chronic dry skin condition which is painful and very itchy. Children tend to scratch at the effected patches until they tear the top layer of skin off, which gives some momentary relief. It’s a miserable business for both the baby and their helpless parents.
All you can do is moisturise and cover up the area they want to get at, and then deprive them of the tools to scratch themselves to pieces. You have to keep their miniature nails short but no parent would risk going anywhere near a struggling baby’s hand with a scissors, so my wife nibbled them off for him as many mums do, whether they admit it or not. The next line of defence is tying thick mittens over their hands to stop them scratching themselves raw.
When you’re doing the sort of job that involves twelve hour days on a slow one and also comes with some homework, you can only do so many months of sleepless nights up with a baby who’s having a bad time. You can’t cuddle up and take a mutually exhausted afternoon nap with them.
In the end, my wife did most of the heavy lifting with him through the week, because I couldn’t work without sleep. Bath every day, rubbing in moisturisers and copious amounts of E45, the treatment and bandaging up of the skin he’d managed to scratch off, sitting up with him through the crouched over misery of the bad nights. Weekends I’d take over.
We used to have various ruses and distractions to stop him scratching and get him to sleep. When children are very young, they trust implicitly anything a parent tells them. We’d found a black, flat, trapezium-shaped rock on a walk by the sea and I told him it was a magic rock; if I rubbed it on the itchy spot, it’d make it go away. It worked because of the power of suggestion, but was helped by being held under the cold water tap before being applied.
It’s a psychological cliché that the youngest of three brothers will always be trying to catch up with them while they tease the hell out of him unmercifully. He was given the nickname Vladimir by one of his siblings, and as with all accurate nicknames, it stuck because it somehow reflected his bouncy, slightly pushy and adventurous approach to life. He was Vladdy when he was small, Vlad when he got older and was only ever called Vladimir when he’d done something totally exasperating or outright bloody marvelous. He still bounces between those two extremes.
Things come in threes as they say, and the next one to hit him was scoliosis. It’s essentially a degenerative condition which gradually curves the spine. At worst and if left untreated, it results in a severely bent over posture which puts strain on the heart and respiration, resulting in a premature death. The cherry on top was that instead of having the usual one twist of the spine, he had two. That’s my boy.
The first non-invasive line of treatment was for him to wear a hard plastic brace all around his torso which he did for years. The instructions were he had to wear it twenty three hours a day but we couldn’t prevent the stubborn little bugger maxing out and doing the full twenty four. I could see he wanted control, to fix his own problem.
He wore successively bigger braces for nearly a decade and tasteless as it might sound, there were some funny moments. When he first wore one, he’d reach for something and just fall over because he couldn’t adjust his centre of gravity by shifting his hips. In junior school when the kids discovered he wore it, he spun a great story about being half robotic or a cyborg and of course his stock rose accordingly. When he got older, we had to insist on a cut out area over his stomach because like a lot of skinny kids, he could eat his own bodyweight in food on a daily basis, so a stretchy patch was added above the hard points where it buttressed itself over his hips.
He wore a brace until he was seventeen and the results were marginal. It was decision time, do the big corrective surgery or lose the brace and hope the spine might straighten out as he grew older. In best inclusive and modern parent fashion, we asked him what he’d like to do and he went for the operation. We of course said we’d sign the permission form but I wasn’t about to do a damn thing until I’d met the surgeon who was going to cut my boy open and attach a metal brace directly to his spine.
When you’re an expert in some things, you pick up the knack of spotting bullshitters or real experts in other fields and the surgeon passed muster. He told us that the sort of surgery Vladdy was going to have was equivalent to being hit by a truck and we should be prepared to deal with that. The first operation was a four hour effort. It was the simple one where they went in through the length of his back and attached most of the ironwork to his upper spine.
While it was going on, I walked with my wife to the nearby British Museum to show her the Rosetta stone. I chatted on about why it was significant while my mind was in an operating theatre a mile away, and she listened politely and did the noddies and never heard a damn word I said. We ended up in its airy, splendidly jolly café watching two very expensive and untouched coffees getting cold and holding hands in silence.
So much for distraction plans.
He bounced back from that operation remarkably well, but the second one was scheduled for a week later and that was when the truck really hit him. For that one, they had to cut in through his lower right side to fix the second twist at the base of his spine. It took a big bite out of him but the pain management team at Great Ormond Street Hospital (GOSH) are simply world class.
He ended up with a button he could press which would give him a shot of an opiate cocktail when things got bad. My wife and I had been doing the 24/7 bedside relay and he’d look at me before clicking the button. “Do it tough guy, there’s no danger of you becoming a junkie” I growled and went back to my book. I had checked with the team – there was an automatic hourly limit and the amount delivered was enough to dull the pain but well below potentially addictive levels.
He needed a couple more weeks in hospital to get over that one but an incident comes to mind. It is a children’s hospital with seventeen year olds something of a rarity. Three student nurses, who were all around his age, washed his hair in bed. He’d long curly hair and it was a bit of a job but with a lot of giggling, jokes and a bit of girlish flirting, they got the job done but I’d seen him pressing the pain kill button. A steady click all the way through.
I can read him. When they’d gone and after a decent interval, I asked him if he was okay.
“That was tough” was the minimal reply, and that was the nearest he ever got to a complaint over the whole hospital interlude. I dipped my nose back into reading Douglas Hofstadter’s book on Gödel, Escher and Bach to hide my emotions. Pride doesn’t even begin to describe how I felt about such a grace under pressure answer, never mind his easy and charming manner with the girls despite the discomfort. Some things you can’t teach.
We got him home and with all respect to GOSH, that’s all we wanted – our boy home. Two and a half stone lighter, three inches taller but our boy with his long pianist fingers you could now nearly see through, our bambino safely ensconced in the living room because there was no way he’d make the stairs to his room. We’d got him a free pass to repeat his final year to do his university entrance exams. He wouldn’t accept the sympathy pass and over my objections did the hard cramming work to slay the exams and eventually go on to gain a degree in biology. That’s my boy.
There’s lots of stuff you do as a dad which the kids or the family have no interest in. Sports would be one of mine. When I’d finally settled down, I still needed the physical thing as some relief from the sitting at a desk thinking job. I’ve played sports from my mid twenties onwards, mainly racquet sports in teams but a few individual ones like fencing. My sons had absolutely no interest in sports and you have to accept that. They’d hammer away at a keyboard while you’d watch the bounce off the back wall of a rubber ball and be ready to absolutely kill it just as long as it popped up enough.
Their latest video successes in Doom or Duke Nukem paled a little bit when you’d been up against a ranked squash player who routinely stored the ball you were going to be playing with in his jockey shorts, just to warm it up so you both could get off straight away to a cracking start. It’s practical, I’d no problem with that so let’s just boogie on and do the dance.
You do sports and quite frankly it’s gladiatorial. The warriors are in the arena and it’s a win or lose proposition. For them it’s real – for the spectators it’s just a safe thumbs up or down proposition, and I’ve always despised that sort of passive, on the couch side-lines shite.
A year ago, when he announced he was going to run the London marathon, I was a bit yeah okay. But he never gives up, and that’s a commendable thing. We’ve had a year of him learning to run for a bit longer than a bus idling momentarily in our village. A year of raising the two thousand pound entrance fee via quiz nights, novelty food outings and other stuff but also a year of him again learning the tough stuff like you do have to somehow run through the injuries, through the limping nagging damage towards a tape. When you play sports for real, you learn to carry the hurt because it’s always going to be a part of the deal.
I’m aware that reading this piece could come out as a dad wittering on about his son but it’s just straight narrative stuff. It all happened to him, but it also happened to all of us as well. He’s no more noble than any of us and just as big a twat as you or I. When anyone in a family is seriously ill, it’s a family problem. Children endure hurts because they don’t get any choice in the thing – everybody is effected but all the other kids need their time and space with you and their own exclusive attention. It’s a fine balance and the other ones need their cuddles too.
A smug surgeon once told me all the miracles occurred in paediatric wards, but unlike him who’d never sat for hours in waiting rooms with other parents and their sickly children, I also knew that was where all the tragedies occurred. You’d see it in the faces of the mums and dads. A kid with real problems who was never going to get within striking distance of twenty or one with an aggressive bastard variety of cancer who was never going to make it into double digits. They always hung on in there for their kid. You learnt to count the simple tender mercies of whatever it was you were trying to contend with as a family.
He’s never actually ran the whole twenty six miles of a marathon but he’s got close to it. Knowing him I’ve no doubt he’ll be crossing the finishing line, even if that means dragging himself over broken shards of glass to do it.
The charity he’s running for is called Farleigh hospice. It’s not a mega charity, it’s small time really and relies on an equally small army of dedicated volunteers to keep going. It provides as much comfort as it can for the terminally ill, and just as importantly by giving the sufferer mini stays away from home, an occasional break for the family coping with a bad situation 24/7. Despite what you might have heard, Essex is a lot more than white stilettoes and Ford Cortinas. We’re a well kept secret.
Many, many years ago, when dinosaurs ruled the Earth and I was young, single, footloose and fancy free but getting through one of the rougher patches in my life, I felt the need to even some things out. For a number of reasons I wanted to give something back, something simple, unconditional and balancing a few sins out against a greater good.
Volunteering time to a charity seemed the obvious way to go but everything including even the specialist ones that dealt with nursing a wee birdie with a bruised wing back to full health had waiting lists of only the good and the virtuous. I knew I wouldn’t have lasted more than five minutes with that lot, and that’d be tops.
The only one crying out desperately for volunteers was a once a week club for mentally handicapped adults which was run on a shoestring by a knackered out and very cranky old priest who liked a drink or three, but never once in his life took his eye off the ball. The schoolmarmish librarian who maintained the list of local charities gave me the you really don’t want to go there look, which piqued my interest.
All you had to do was turn up and be sociable but most volunteers were put off by the prospect of being near potential axe murderers, or a grumpy old bastard of a priest who had absolutely no time for do-gooders on an ego trip.
It was the unwanted ugly duckling of the local charity landscape. I’d roar up on an old beezer starfire motorbike that leaked more oil than the Torrey Canyon and bounce in there a bit over large and enjoyed having a laugh with the loonies, because the whole place needed some light-hearted tomfoolery, with me being Tom the Fool. I’ve never had much in the way of a big ego and occasionally enjoy being a performance tart.
The priest used to tell me off regularly for calling them things like loonies and it was part of the devilment that I’d say things like that just loudly enough and within his earshot so the loonies could enjoy the resulting telling off I got. They knew I was just being naughty and enjoyed the pure badness of me being a cheeky chappie standing up to the big boss. The priest cottoned on in the end but he was too serious to be anything other than crap at improv, so that was the finish of that particular line of fun.
After a few initial arcing sparks between us, he and I formed one of those quiet friendships.
At the end of the night after we’d stacked away the tables and chairs and there was only the two of us left, we’d sit in the refectory together and talk about things like faith and the possibility of redemption over a couple of glasses of his brandy. It was that rarity – youth and old age in honest conversation and gaining an understanding of each other.
But in vino there was only a reserved veritas between us, because I wouldn’t accept his offer of taking my confession, and he’d never tell me what made him such an angry man. Quid pro quo. Betrayed youth and a seething anger at everything is at end of day something which’d take some years to cool down before it could even be approached.
I admired his tarnished but still steadfast belief, scarred though it was, and he feared for me because of my destroyed faith in any notion of God, and that somehow made us both Brothers in Christ, but a Christ whose teachings I no longer could believe in. When it’s a true thing, it really doesn’t have to make much if any sense. I never said it to him, because I didn’t realise it at the time, but he was a comfort.
Mentally handicapped is a very broad category; it’s a spectrum really. There was a girl in her late teens who was in the worst band of that spectrum – just short of passing for someone “normal” but was painfully aware of how very close she’d come. The square root of nine equals something stuff was always going to be fleetingly beyond her, but the raw human needs were still there. All she wanted was a kind and loving husband, a couple of children to wrap her own love around and the simple family thing, but knew she’d probably never have it.
I’d said no as gently as possible to her advances and she’d accepted that. We were just friends now.
We’d always play a game of draughts which I’d taught her. As she was hovering to play a wooden disc and in that quiet offhand way people pose a question which is important to them, she asked “Why do you come here? We’re never going to get better.”
That one came deep out of left field and caught me totally off guard. The loonies, like children inside adult bodies, asked very direct questions which cut real down deep into you and never mind the quick. I came up with something lame but passable in the way of an answer which I think she didn’t quite believe, probably because I didn’t either, but it was a question I thought about for some time afterwards.
If you’ve ever been on the margins, you know how it feels to be alone, friendless and isolated. Abandoned. Even in the nicest most polite way, you’re an embarrassment to your own people, and you know it. If you’ve ever been in a hopeless situation, a bit of longed for hope can keep you going until the situation might change, and that indeed had happened to me.
But at end of day when it turns out there’s no hope – absolutely none – it’s only common humanity to help people in that situation, even if that means nothing better than easing their passage into the darkness with as much dignity, comfort and grace as possible.
I think my son Vlad is in that area of thinking, and that’s why he’s going to run his rather large cotton socks off attempting to complete his first full marathon in a week’s time. To my mind, he’s already run enough personal marathons to last a lifetime, but it’s a measure of the man he’s grown up to be that he’s prepared to run yet another one for the benefit of other people.
Please donate whatever pennies you can afford to the people who won’t be getting better. None of it will be wasted, and don’t you neglect to tell them you were sent by Vladimir, son of Pointman of the hopeless and long forgotten loonies and a broke-down, banjaxed old priest who was to the very end a true shepherd to all of us.
To donate to Farleigh Hospice, click here.
To donate to Great Ormond Street Hospital for children, click here.