Johnny Sombrero and his World of Pain

cowboy graphic

While lying in bed at 5am today, holding my left heel to my chest to ease the throb as I have for the past 20 years, a thought occured to me. “If only I could talk to a pain expert for more than 15 minutes, to explain exactly how I experience pain. Only then might we  devise a solution tailored to me that would provide total, permanent relief and add actual quality to my life (and to that of my family).”

Since no expert ever has that time to spare it is down to you, dear Reader, to put up with my selfish outpourings. I’m not digging for sympathy nor suggesting that my pain is worse than anyone else’s. And there are days, or more likely half-days, when nothing hurts at all.

If I were you, I wouldn’t bother reading on.

Back to the bad old days

A family celebration in Jersey was ruined by my experience at the hands of the EasyJet handling agent. I use a lightweight manual wheelchair and on arrival in the island from Gatwick, it had been brought to the aircraft door as expected. With a handler’s help we negotiated the boarding ramp with ease and my wife, daughter and I were soon joining the Covid Queue. A seamless procedure – one I have come to expect during many flights this century.

Our return flight provided a different experience. Before pre-boarding EZY896 (13/9/21), I was informed I would not be permitted to use my own chair to scale the ramp. Instead, I would have to transfer to one of their devices, then again to an aisle chair to reach my seat.

The chair waiting for me was totally unsuitable. A flimsy affair, the armrests were fixed making a transfer awkward at best. The footrest was tiny, offering little room (let alone support) for my size 8 paralysed feet. It looked more like a coal-sack trolley and I refused to be loaded onto it. I explained that my own chair had proved perfectly adequate four days previously.

Initially the handler acquiesced but by the time I moved onto the ramp, he had obviously been rebriefed. We argued but I was conscious that my fellow passengers would not be on my side for long. With difficulty I managed to transfer and my feet immediately fell off the rest, one becoming trapped underneath. I continued to argue with the handler (a man in his 60s with a grey beard and a badly-fitted face mask) until at the aircraft door he lost his temper. He thrust his face into mine, wagged his finger and threatened to have me removed from the flight. (The exchange was witnessed by the flight crew. He said I had been rude; I had told him to shut up.)

I was now furious. The handler’s complete lack of empathy reminded me of behaviour I encountered when I was newly disabled – 30+ years ago. Since then, airport and airline staff around the world have been trained and, until this incident, I felt confident that I would be treated with consideration and my dignity more-or-less preserved.

I want this man to be reprimanded, relevant procedures reviewed and passenger-facing staff retrained. @EasyJet has so far ignored me (I sent a survey response to the CEO the following day) but I have had an apology from @JerseyPorts, who are in touch with (the agent) @SwissportUK.

Wheelchair users do not like using unfamiliar substitutes – in extreme cases they can be dangerous – and, as far as practical, they should be avoided. But more importantly, in the 21st century, disabled passengers are entitled to expect a far better service than I received in my former home the other day.

Crashing like cymbals.

While the ‘harmonica’ pain is regular — you might say unremitting — every so often my central nervous system reminds me just how screwed up it is. Without warning I experience a sharp spasm of electric agony behind my left leg that renders me incapable of speech. I clutch my hamstring and grimace, barely breathing through my clenched teeth. If Linda is with me she rubs my back. It doesn’t do a damn bit of good but it reminds me that, at that moment, I am not alone. If I am alone, I sometimes scream. I am overwhelmed.

After 10-15 seconds the agony fades and after a final, forget-me-not jolt, it vanishes into the ether. Like the post-coital harmonica I am now pain-free, until the next time.

I liken these spasms to cymbals because they are sudden, sharp and, left to themselves, they produce a lengthy tone. Again they occur in the back of my leg (sciatic nerve again) but the precise site varies. They often invade during an otherwise calm period, just to keep me on my toes. They are also a comparatively recent phenomenon, perhaps associated with my trunk’s slow collapse into my wheelchair. The one thing that both sensations have in common is the heel, because the spasm invariably radiates down there. I remember my left heel once ruined a job interview. You know how vain types hate their profiles, or their ears, or their middle-age spread? I hate my left heel.

Every so often, I wonder why I bother taking drugs to ‘control’ pain like this. Sometimes, if I am enjoying an infrequent quiet patch, I will try to reduce the dosage. It won’t be long before I am forced to accept that, without them, life would be worse.

Wailing like a soft blues harp.

I get more excruciating pain but this is the most distracting and most regular, and I’m experiencing it right now. It starts in my left heel, often at its back and left, occuring every 3-4 seconds and lasting 1-2. It goes on for days (and nights) and there is very little I can do to mitigate it. It helps if I stand but I can’t do that for very long. It doesn’t respond to pain-killers. I hold my heel or, sometimes, the back of my knee to my chest — more for comfort than anything else. This is one of the reasons my left leg is now shorter than my right. Seriously. It’s over 4cm.

Sometimes I get relief from lying on my back on the floor. On occasion, usually when I’m in this position, the throbbing will build in intensity, and migrate to the back of that knee, building and building until I experience what I can only describe as a climax. Thereafter I can be blissfully pain-free for a few minutes, perhaps longer. If lying down, I can catch up with some sleep.

I often descibe this as sciatic pain distorted by the spinal injury, but I’m told that the relevant nerve is not damaged.

… to get his pain fixed!

Johnny has been troubled by acute nerve pain ever since he became paraplegic, through a flying accident in 1985. Since then he has tried everything, from cranio-sacral massage to spinal surgery, from faith-healing (not enough, clearly) to dope cookies — all without lasting success. I did get two weeks off after the cookies (Dad, bless him, was my dealer) and a full six weeks after trying CBD oil, but after the jolts kicked in again they would not go away. I stayed clear of opiods, thank God. They didn’t stop the pain; I just didn’t care about it.

But I have spent all the past 36 years on healthy doses of other prescription drugs, including anti-depressants that coat the damaged nerve endings. Without them, the pain would be even worse. I have always pointed out that the stuff was there for the pain rather than depression, but the pills must have affected my demeanour. It would also acccount for the levels of vagueness and general lack of spunk that cost me work as a freelance and one particularly exciting full-time job. That’s my story, anyway.

The paddle

A couple of weeks ago I tried something else and, as I write, am waiting to find out if it works. In the Neurological Wing at St.George’s Hospital, Tooting, I was fitted with a spinal cord stimulator that emits a signal to counteract the pain. It consists of a strip (they call it a ‘paddle’) of electrodes fitted to the appropriate lumbar vertebra and connected to a battery pack inserted into my side — at the bottom of my left-hand ribcage. I was only in for a few days.

The slim controller

Yesterday I returned to have the device switched on and tuned. The staff used a tablet to start and adjust a vibrating signal emmited from my device, to help me find the best location and signal-strength. The device was then switched over to emit the same signal but with the vibration removed. I was presented with an actual i-Pod Touch to help me adjust the timing, and a substantial magnet for jump-starting it (or me, I need to read that up). The prognosis is a 70% reduction in 70% of the pain, which I can live with and which I hope will allow me to come off the pills. I’ll need a new battery pack every five years.

Next Monday I have to send Merry (Clinical Nurse Specialist) a photo of one of my wounds, just to check all is well. By then I should also know whether or not the device is helping.

Whatever the outcome, many thanks to Merry, Messrs Pereira and Mostofi and the Neuromodulation team for their skill and care.

So far, Johnny hasn’t noticed anything exciting, apart from the vibration frequency appearing roughly the same as that of his electric toothbrush. Perhaps he could have shoved that up his bum, switched it on and saved everyone the trouble.

… the Devil’s Jumps!

Although Johnny lives in Hampshire, it’s right on the border with Surrey. The bambinos went through the Surrey schools system and Juanita still works for Surrey County Council. Johnny’s dog-dragging routes take him through the dusty border towns of Churt, Frensham and Dockenfield — lying in an area known (mostly by greenhorns and carpetbaggers) as the Surrey Hills.

So the family has grown up taking lanes like Jumps Road and areas like the Devil’s Punchbowl for granted. But now Johnny has a folk-tale for ‘ee about how them there names took root. It involves witches, fairies, a cauldron and the Devil himself.

Back, back in the mists of time, a white witch known as Mother Ludlam lived in a cave worn into sandstone cliffs near the market town of Farnham. Or it might have been a colony of fairies — who knows? Anyhoo, Mother Ludlam was valued by the locals for her ability to conjure up utensils and tools. Anything you needed, she could provide. Just visit her by her cave at midnight, make your wish, turn around three times, repeat the wish and when you get back home, the item will be waiting on the doorstep. Your only commitment? To avoid her wrath, make sure you return it within two days.

One day, so the story goes, a stranger appeared and asked to borrow the cauldron itself. Mother Ludlam was reluctant, then suspicious. Her eyes were drawn to the sand outside her cave and they saw hoof-marks. The footprints of the Devil himself! He grabbed the cauldron and fled, pursued by a furious witch on her broomstick. He made three giant strides to the south before dropping his booty in panic and making his escape.

The actual cauldron

His strides tore up three huge mounds known as the Devil’s Jumps and are there to this day. So is Jumps Road in Churt. The last of the mounds, where he is said to have dropped the pot, is known as Kettlebury. His fourth landing created a depression known hereabouts as the Devil’s Punchbowl, now a National Trust property. And the cauldron itself? Mother Ludlum recoverd it and, for safety, placed it within the sanctified ground of St Mary’s Church in Frensham. Where it lies TO THIS DAY!

So the legend goes. As is the way with folk-tales, I have passed on this one from a much more detailed account by David Castleton. But the next time I am riding past St Mary’s Church, I will drop in to see if the cauldron does indeed lie next to the pews. Easier said than done, but then at least we’ll know that everything I’ve told you is TRUE!

… on Staycation!

I won’t pretend these visits were the result of my endless quest for new adventures. If Johnny had had his way, he would be spending the summer holed up right here, only venturing out on the hand-bike (along a well-worn trail) or with the dog in the boot. As for wearing a mask, I only went somewhere that required one last week. But as usual, Juanita Fajita had other ideas.

One day Jock, one day.

First of all, did I mention that my tall-ships sailing experience got binned? For the second time? The more this happens, the more I want to do it. A few domestic voyages are pencilled in for next summer. I never thought I would consider one more passage through the Dover Straits as an attractive holiday option. “Bridge Ops, further surface contact, green two zero steady bearing …”

So, with quarantine threatened, we made a few trips that didn’t require a passport.

Buscot Park is a National Trust stately home on the edge of the Cotswolds, and the Failey clan gathered there on a blazing August day to celebrate Linda’s (and her twin brother Ian’s) birthday. While the house was closed the gardens on their own made the visit worthwhile, and a shady picnic area offered welcome respite from the sun. That’s where I stayed, I must confess, so the rest is pure hearsay.

As a private home supported but not owned by the NT, accessibility does not reflect modern standards. Steps (with handrails, though) up to and within the main house and to several garden terraces restrict wheelchair users and indeed the guide recommends power assistance around the grounds. So you might be forgiven for concluding that a visit wasn’t worth your time and money (there is a separate charge to visit the gardens but a handful of NT membership cards took the hit).

There is an accessible route!

But there is a great deal for the horticulturalist (So Johnny) and art-lover to enjoy outside. Visit the website, I’m busy. While waiting in the shade for the main group, we plundered the tea-room’s stock of Calippos. On the downside, I could not tell who, if anybody, had wiped down the disabled loo before me. Someone could catch something.

Chidham, I think, from Bosham.

We drove to Bosham on the south coast to meet Deb and Nick. It’s a beautiful area, favoured by yotties and peppered with art galleries and tea-rooms. And flat. Lovely and flat. Walk/wheeling round the shallow inlet, we passed quaint old houses with gardens leading down to the sea. The path floods at every hight tide and a step or two are their only defence against the collapse of the world’s ice shelves. Not sure the one we saw For Sale represents the solid investment it once did.

With Deb and Nick

Then round to Chichester Marina for a late lunch at the Boat House. We sat in a shady veranda area, from where I could surreptitiously glance at the pretty girls in their summer dresses. Indulge an elderly gent; I meant no harm. With the Eat Out to Help Out discount in place, it was really good value too. Finally, another flat stroll (that’s a better word for what we do) to Birdham Pool.

A grand day out.

Because the West Sussex coastal area is so flat. there are quite a few accessible walks to enjoy. Download the guide here. We’ll write about some of them soon.

… into a lock-down cock-up!

My new wheelchair developed a fault. The manufacturer insisted on checking it — in Poland — and after months of hesitation I shipped it there, just in time for Europe to shut down. Now my old chair, after serving me well for fifteen years, is on its last ‘legs’. What’s a poor boy to do?

Johnny Sombrero’s Mustang

Soon after taking delivery of my new GTM Mustang wheelchair, at the beginning of 2019, I noticed that the right-hand front caster was spinning idly above the ground. Just a mil or so and, with me aboard, the problem went away. However, since I feel that having all four wheels touching the ground is not much to ask, I asked (dealer) Cyclone Mobility to investigate. The managing director’s swift reaction was, “We’ll pick the chair up and have a new one made.”

They did indeed pick it up but, a day later, mysteriously pronounced it fixed and sent it straight back. It wasn’t long before the problem reappeared. An engineer came out and fitted some washers but that also proved a temporary solution. Eventually Cyclone got in touch with Warsaw-based GTM Mobil to arrange a replacement frame, but they wanted to look at it first, in Poland.

I couldn’t understand why they could not accept the video evidence I had supplied, clearly indicating the problem. Why would they need it before making a replacement? Did they intend to put it back in the jig and twist it back into shape? Would that guarantee a lifetime of stress-free stability? I didn’t get it.

Over the next six months my relationship with Cyclone became strained. They took ages to respond to my enquiries and, rather than representing a dissatisfied customer against a supplier who was at fault, the MD  saw himself as a “man-in-the-middle” who should not take sides. A wheelchair user himself, he didn’t appear to ‘get’ how removing my primary mode of mobility would affect my life. He knew why I had ordered the chair in the first place.

After several false starts and, as we now know, with impeccable timing, I let it go. That very evening, sitting on the sofa with my old chair to one side, i discovered that one of the forks was twisted. Panicking, I grabbed the phone and sent Cyclone an email expressing my frustration, threatening legal action and God knows what else, if they didn’t send it right back. It wasn’t, I admit, my finest hour — I should at least have slept on it. And as Linda pointed out to me, several times, I shouldn’t have let it go at all.

Cyclone responded in a rather hurt manner and I found myself calling to apologise for my outburst. We agreed it should go after all and the MD promised that GTM would give it priority. Last I heard, GTM was running a skeleton operation in Warsaw, no doubt prioritising social-distancing instead of fixing my goddamm chair.

Will I ever see it again? Did I mention it cost two-and-a-half grand? Will GTM and/or Cyclone survive the shutdown? When will my old chair finally collapse? Will Johnny be reduced to bum-shuffling round Sombrero Towers like a street cripple?

Oddly, he is remarkably sanguine about that distinct possibility. After 35 years of this bollox, t’is but a small step. So to speak. But I don’t think much of the customer service.

…To Dublin!

Ireland’s capital is navigable, accessible, and it’s true what they say about the locals. Johnny almost felt guilty that they got trounced in the Six Nations.

That’s the Guinness Six Nations rugby tournament. The black stuff featured large during our weekend break, so much so that Juanita and I ended up watching the crunch England v Ireland match over a cup of tea in the hotel lobby.

My goodness, it’s …!

The first taste came during our tour of the Guinness Storehouse at St James Gate. Having declined all the added extras — the personalised beer glasses, your selfie tantalisingly dribbled onto the white head — we made our way up the impressive circular tower while learning, via the obligatory son et lumière, how the stout is made. The humans who did talk to us knew their stuff but, when it came to tasting it, I took exception to some teenager’s encouragement to ‘gulp, don’t sip’. Well derr.

We did get a ‘free’ pint at the circular Gravity Bar, though. That was lovely.

It wasn’t just me Officer.

Booze turned out to be an important feature of our visit. Access, apart from the flights (see below) was not. Buy a Leap card at the Airport Spar for big, big savings on buses and trams. Perhaps I should have brought my Freewheel to deal with the cobbles of Temple Bar, wherein it took us several visits to find the eponymous watering hole. Every damn one of them seems to be called Temple Bar.

Anyway, back to the drinking. With the yeasty goodness of Guinness still on the sides of my tongue, at the TB I favoured a double Jamesons on ice with (an inspired move, this) a glass of water on the side. All the taste, none of the headaches.

The best pub we visited surely was the Doheny & Nesbitt on Baggot Street, where we joined a rowdy croud about to enjoy France v Wales. It’s the people, so it is. Just a couple of pints there.

The Gravity Bar — I think

Spread over four days this consumption doesn’t add up to much, I know, but I’m an old man trying like hell to avoid a hangover. These days, one of those would write off half the vsit.

And it wasn’t all drink, nossir! We did galleries and museums, and saw two shows; Blood Brothers at the striking Bord Gais theatre in the Docklands area and The Lieutenant of Inishmore at the famous Gaiety on South King Street. The two plays couldn’t have been more different but, faced with a choice, I’d go for the dark, dark humour of the latter. Love that dismemberment scene.

We overheard lots of languages, including a fair bit of Gaelic, and met some friendly folk. The staff at our hotel, the Maldron on Pearse Street, couldn’t have been more helpful. Aer Lingus, on the other hand, perhaps should. I had to fight my case for an accessible seat and on both sectors, despite waiting patiently to disembark after everyone else, they took ages to locate my chair. Just like in the 80s.

Do you go past Temple Bar mister?

… To Amsterdam!

Just because a place is flat doesn’t make it accessible! Certainly the landscape in The Netherlands is a help but the bars (and there are some great bars) and restaurants, typically, are up at least one bi-i-g step. It got to the point where, patience exhausted after four days, we chose our final venue based entirely on its level entrance.

Adam and I took the excellent Eurostar to Brussels and a Thalys train on to Amsterdam. There’s an Ibis Hotel close to the central station and we had booked an accessible twin room. The chair-lift from Reception to the restaurant was broken (we had been warned but you have to wonder for how long it had been u/s) but there were plenty of better breakfast options in the station concourse.

That evening, for some reason, we drifted off towards the Anne Frank museum. These days it’s quite an operation and you have to book slots to visit weeks in advance (but some tickets are made available on the day). Even at 5pm there was a queue. As expected it was not accessible but a friend had recommended the adjacent pancake shop, which is. Here is a photograph of our meal, including Adam’s disgusting reconstructed tea. You’re welcome.

Maritime Museum

November weather became a factor on Day 2 and we had to postpone our planned bike ride into the countryside. Instead we headed through the rain to the Maritime Museum, which shows some excellent art, models and artefacts — many from wars against the verdoemde English. There’s a fantastic golden Royal Barge and a full-size replica of a Dutch East-Indiaman is defo worth a visit, if only to experience a short but thrilling VR ride around the 18th century ships and harbour. This was my first such experience and I whooped like a kid. Clearly Millennial Adam had seen it all before.

Tally ho!

As forecast, the next day was sunny and clear and we took off to Starbikes to collect our trike. The electric-assist contraption had a wheelchair platform up-front, to which I was strapped like a Christmas mailbag, and Adam did all the donkey-work from behind. We headed off for the free ferry and then into the hinterland. For me it was eye-wateringly cold but a lined cover — the local equivalent of a tartan blanket — kept me poor old knees warm at least.

After a couple of hours’ steady pedaling alongside canals, past sombre fishermen and over the odd bridge (we had to take a run at these), we reached Zaanse Shans and a display of five, count’em five traditional windmills. A bit of a tourist trap, I felt, but perhaps we didn’t give it a chance. We were desperate to get back to town before we lost the sun’s warmth, so there was just time for lunch. Great pea soup mit Spek!

For Monday, Adam had booked a slot for a Rembrandt v Velazquez MMA grudge match at the Rijksmuseum, so we shlepped off there under lowering clouds. We had planned to visit the FOAM museum of photography en route but, frustratingly, that was inaccessible too. However the main event lived up to expectations; it’s a bit of a maze but the art on show is wonderful. Afterwards we caught the No.12 tram back to the station; a fold-out ramp was available but I had to ask the conductor for it (locals clearly manage without).

On our last day we made a rather fruitless side-trip by train to Haarlem. We had booked help but turned up late and were scolded by both the lady in the ticket office and the chap holding the ramp.

The excellent Sharrebier

From the bars we stumbled upon during our stay, only the Cafe Sharrebier was accessible. Luckily, it also has a fine range of beers (each with its own glass, apparently). We also ate well but only the more formal De Kroonprins, our final destination, boasted a step-free experience. Other level-access venues may, or may not, be available.

… on an exercise bike!

I’ve let things slip. I acknowledge that. From walking everywhere on two sticks to struggling around the car with elbow crutches (currently seeking a car with the petrol cap on the driver’s side), the insidious process of weakening has taken many years. And the less I have used my semi-paralysed legs, the weaker they have become.

It’s partially to do with getting older. If during my early decades of disability I lost my balance and fell over, it was a straightforward manoeuvre to regain the vertical using my wrists and arms. But one day (forgive me for not making note of the date) I must have either bruised my bum or needed help to get back up. So the next time I walked, I would manage the risk. And over the months and years — you get the drift.

It is mainly down to laziness, however. The less hung-up I became about using a wheelchair, the more convenient it became. I still hate having to use it, just not all the time. I still try to keep fit but the exercise — mostly hand-cycling — is confined to my upper body. And now I’m in my 60s, even those bits are showing wear and tear. Since I know that my glutes and quads still work, I must now help them contribute to what’s left of my mobility.

I rock this joint.

So the other day I bought this mofo. Got a good price on GumTree — 2nd-hand fitness equipment is a buyer’s market — and jammed it into the office in place of the unused scuba kit and several guitars. Climbing aboard is still a two-man job but, once there, I can make it work. I use the minimum setting but will soon ramp up the volume “Ramp up the Volume” to a gentle incline. And after that? My only enemy is a total absence of staying power.

Being a modern machine, I not only get read-outs of time, speed and distance but also, now and again, motivational messages like ‘You Rock’ and ‘Awsome Dude’. That’s all the encouragement I need. Man.