I lead a more complicated life than most. Apart from the obvious mobility and bodily function issues, over the past quarter-century I have had to deal with varying levels of neuropathic pain: stabbing jabs of agony to be more accurate. In specific places in my left leg below the knee. To combat it I have tried (not an exhaustive list) acupuncture, cranial-sacral massage, dope cookies, nerve-block injections, anti-epileptic and opioid drugs, hypnotherapy and faith-healing. It’s a long list. None of these, often costly, treatments have delivered long-term relief. Most of it I have come to live with but, over the past ten years, the problem has been exacerbated by a new source of acute discomfort. This particular sensation typically radiates like an electric shock up my left leg from the heel, via the back of my knee to the arse cheek. At its most intense, a 20-second burst of it renders me incapable of moving. I am regularly trapped in a cycle of less painful but equally debilitating shocks that might last three days and result in at least two completely sleepless nights. The pain has affected me, my family and my work-prospects – at one point I was screen-tested by Channel 4 for a news journalist’s placement and, distracted by the throbbing agony, completely blew it. This after an encouragingly pain-free one performed for Five News. Since it started after my original injury, I eventually deduced that this might be a form of sciatica, but distorted and intensified by the damage to my spine so as to present itself in this novel way. As a middle-aged man I was not, after all, immune to the thrills of ageing.
Find someone who knows their muscularskeletal stuff
Our friends were beginning to notice my writhing and reduced contributions at dinner parties. One of them works at a spa in Hampshire and was full of praise for the skills of its in-house massage therapist. Elaine, she said, really knew her muscular-skeletal stuff and would I like her to give me a once over? Now apart from the slight lump at my L1 vertebra, I have never had a problem with my back. I presumed that the compensatory work I put it through, in order to get around, ensured it was all messed up. But it was a case of out of sight etc. As I was running out of ideas, I thought I’d give one more a shot. She certainly knows her stuff. God knows I didn’t understand two thirds of her commentary, as she probed the muscles attaching my spine to the rest of my damaged body. She explained that precisely because the muscles were attached to the spine, they had an effect on the alignment of the vertebrae. She also gave my left hamstring a good going-over, in case the sciatic nerve was trapped therein. Impressed, I signed up for a few more sessions. Apart from it being great to know that an individual was taking such an interest in the problem and could even see scope for improvement, her treatments were extremely relaxing. After half a dozen visits, Elaine announced that my spine was much straighter and the back muscles now relaxed – and staying that way. I had already worked that one out: after a single glance, friends were remarking on my increased mobility. The sciatic problem even went away, just long enough for me to think it was cured. She suggested that future rehab should concentrate on posture and recommended I contact a Pilates therapist, with a view to alternating appointments. My wife Linda put me in touch with her own tutor, Gill, and I went along under a cloud of quiet cynicism. Gill was quick to point out my poor posture. My left shoulder was lower than the right one, giving me (pointed out by several relatives) a coyly attractive headtilt in recent family photos. My hips were uneven. I sat badly in the wheelchair with my knees splayed. Do these exercises, she said. Sit straight in the chair. Keep your knees together. Lie on your back this way. Make like a snow angel. Pull in your core stomach muscles (beneath the Party Seven). It was like being on parade in the Navy again. Two days later (and I know from bitter experience this is far too soon to judge) I am encouraged. I am sitting properly in the wheelchair and the car. I lie on my back and make sure my wasted legs are the same length. I try not to tilt my shoulder when I use the mouse. I still get the odd jolt and I suspect I never will be completely free of pain. But if I can only learn to control this damned sciatica, I can reboot my life and strive, once more, to become a useful member of society. So far, so good.
Don’t talk to me about holidays. I’ve just booked a horrendously expensive trip to celebrate our Silver Wedding and I have no idea how I’m going to pay for it.
It’s to Grenada and we’re staying in a horrendously expensive hotel. We decided to book a package instead of going independently, firstly because we’re now ATOL protected and secondly because I want us to be
looked after. It’s our first holiday alone since our honeymoon and I really can’t be bothered to have to ‘manage’ this time.
I don’t have to do so much research on our holiday plans as many – and in the early days I took pride in doing the absolute minimum – and have made do with obstacles including raised thresholds, narrow doors, and internal steps.
And bathrooms. How many times have I had to sit in a shower tray (without my splints, I’m naked) and aim my face, Gollum-like, at a meagre stream of water that seemed hot at the top, when I tested it, but was now no more than a lukewarm mist? How many times have I had to transfer from my chair at the doorway to the edge of the bath, inch my way along and then haul my sorry butt onto the bog?
Not this time. This time I have the operator’s personal assurance. I’m going diving – the centre is 50 metres from our accessible suite – but apart from that we expect to spend two weeks of horizontal bliss.
Any snags at all, and I will be on that phone quicker than spit. I just need that cheque to clear first.
On 8 October 1985, I stopped being Andrew Healey and began being Andrew Healey (L1). I believe it’s actually T12-L1 but let’s not quibble. About nine months later I became incomplete, and was disappointed to discover there wasn’t a format for indicating this – ‘L1i’ has a certain elegance to it, don’t you think? I should’ve just started using it in correspondence, after the MSc and knighthood.
Ever since then, whenever I have met a paraplegic, “what level are you?” is always a Top Five question.
Whenever the exchange takes place, I’m reminded of the old sketch featuring John Cleese, Ronnie Barker and Ronnie Corbett. “I look down on him because I have limited bladder control, but I look up to him because he can wee standing up.” And of course I, with an in-dwelling catheter, know my place.
It’s not a very noble convention but it’s a fact of SCI life. During a recent visit to Stoke Mandeville, a consultant told me they were trying to outlaw the practice. Well good luck with that. When you’re in the physio gym, clamped into a standing frame and with the longed-for rush of sensation still not (yet) coursing down your legs, there’s precious little else to chat about with your neighbour. How’d you get yours and what level are you?
And in my own experience, the desire to make that comparison persists through life. It doesn’t do any harm to be reminded, every now and again, that there’s always someone worse off than you.
Best foot forward by Andy Healey, L1i
Hope you didn’t all sign up for expensive courses of cranio-sacral therapy after my last column? Load of hippy rubbish, what was I thinking? But I did enjoy the massages and, hey, whatever floats your adapted boat, right? But the effect didn’t last. Trish suggested I cut back on the pain-killers for one evening after our session and, the next morning, I was in a world of hurt. So I fell back on the pharmaceuticals.
But wait! Ever the optimist, I’m now just as excited about a new cocktail of drugs I’ve started chugging. After a month or so I still get breakthrough pain that hurts like hell, but I also have long periods of not very much happening, which is great. On several occasions this ‘summer’ I’ve managed to lie on my back on the lawn and look at the clouds and trees, without squirming like a trapped lizard every few seconds. Bloody brilliant.
I suspect it would be wrong to list the two ingredients of this cocktail for you but, if it does deliver long-term relief, it’ll be about bloody time. I don’t want to go on about it but I’ve been doing this pain thing for 24 years now and I’d say it’s had a bigger impact on my life – and that of my family – than has the paralysis.
Sorry. As with the massage, it’s too early to tell if the new drugs are the answer to my ills, so forgive the premature enthusiasm. But aren’t pills wonderful?
God bless the welfare state
For several months now, in my day job as an aerospace marketing consultant, I’ve been working two days a week at a helicopter engine repair centre on the south coast. It’s a big place and it takes a while to get around, especially if you’re staggering on sticks. But now, thanks to Access to Work, I have an extra wheelchair that I can keep at work and use to whiz around on the shiny floors.
After a building programme relocated the cafeteria to the other end of the plant, life became more difficult. With only 30 minutes for lunch (staff get Friday afternoons off
instead) it was impossible for me to walk there, eat lunch and walk back in time.
So I got in touch with A2W through my local Job Centre Plus. They sent an assessor, he had a chat and took some photos, the application succeeded and they put up 80 percent of the cost of a new chair – over £2,500. The employer would normally make up the difference but, since I am employed by my own company, I took the hit on that. As I recall the process only took a month or so – I just had to wait another two while the chair was built and shipped.
So I’m a big fan of Access to Work and, if you’re in work, I suggest you visit the Direct Gov website and find out if you might qualify for some new kit. Oh and the food’s not bad either.
Agony on demand
I tried FES for the first time at the Beyond Boundaries show at Farnborough in September. It isn’t for me – at least not right now. Although I’m in good shape from the knees up, the muscles at my ankles have wasted beyond stimulation and the physio’s effort to get them twitching only resulted in the sort of searing electric-shock-treatment
pain I have been trying to deal with. It was novel, though, to be able to tell when it was coming.
But he did recommend that I persevere with the silicone supports, which allow the ankle to flex, rather than return to the rigid drop-foot splints I’ve been using all this time. In a couple of years, he said, he might have something to work with.
I now wear them every day and it’s great to think of tiny little movements taking place down there – even if they’re involuntary. I also love the way they make my socks damp. I know it’s condensation rather than perspiration but that’s OK. I need to watch out crossing slopes though: the thought of turning an ankle fills me with dread. But gosh, that’s what grown-up people have to do! Man at C&A
My only complaint about those plastic supports is that, when fitted over socks, the resultant translucent look is a bit obvious, especially if you’re sitting down. I’m told the expensive ones can be made in a range of skin tones – apparently there is a hairy leg option. I first thought that this was a wonderful idea but on reflection, it’s not really
suitable for the British climate.
What we need is not a tanned hairy ankle, as one might sport with lightweight slacks and tasselled deck shoes, but a range of sock-inspired splints for a more northern European feel. If I won the Lotto, Dale, I would choose some pastel shades for the summer, a couple each of Paisley and Argyll patterns for the winter and a sheer black pair
for formal wear.
I think I’ve just had a Dragons’ Den moment.
I've tried my share of alternative therapies over the years. Acupuncture (Chinese and pressure point), Reflexology - even faith healing at one point. Since Stoke Mandeville have now told me that, short of implanting a morphine pump there is little more they can do for my neuropathic pain, I thought I might put conventional medicine to one side and revisit some of these. And maybe try a few others.
Without much in the way of expectation, I should add. Over the years you build up a healthy cynicism for all things medical and scientific. I remember musing while I was in SM that, if you had to have a spinal cord injury, what with all the research going on into a cure, now was definitely the time to have one. And that was 1985.
And naturally therapy is an expensive business. I know this from Woody Allen movies. I was nervous of getting sucked into lengthy and, ultimately, unsuccessful treatments that cost me a fortune.
Before I managed to research local practitioners, I had a visit to my Dad and sister in Jersey to look forward to. Pippa immediately noted how tired I looked. It all sort of came out then - the sleepless nights, the damage to my work performance, the effect on my family, the general bloodiness of life - and she immediately got on the phone to make an appointment, that very afternoon, with her cranial-sacral therapist in St Helier.
Now my sister can afford to indulge in this sort of crackpot stuff and, a year ago, I'd have made some wisecrack and moved the conversation on. But I figured this time I had nothing to lose, and I was on a weekend break after all, so I went along to visit Sara.
I lay on my back on a gurney while Sara did her thing. You can find out what's involved for yourself - what am I, a salesman? - but, cranialsacral is a wholly non-invasive therapy that involves much gentle prodding, pressing and tweaking. I was experiencing some gip at the time and found it difficult to relax until, with the last tweak of her hands, it went away. Now, my pain comes and goes so this proved nothing, but I was encouraged enough to book another appointment before going home on the Monday. This went well: I was pain-free and felt wonderfully relaxed afterwards. It felt like £40 (x2) well-spent.
When I got home, I quickly made contact (through the cranio-sacral society www.cst1.org) with a couple of local practitioners and arranged appointments. Before these came up I was experiencing pain and had a couple of sleepless nights, so I remained sceptical. But I did feel relaxed after each follow-up session (even if, unexpectedly, sitting up at the end from the prone position ached like hell) and really enjoyed the attention my body was getting. I'm a mass of tensions, you see. They all see me as a challenge.
After five sessions inside a month I settled on Trish as my regular therapist - how weird does that sound? We have agreed a schedule of one hour-long session every three weeks and, at the time of writing, I am four days since my first one of those.
Trish says that the whole body is capable of self-healing. She says that if I experience pain, I should try and visualise the part of my body that's hurting from the inside. In fact I should make a habit of thinking about the inside of my whole body; organs, bones, sinews and so on. I can't remember why I should do this but I have started and it's quite interesting. It is also a great way of falling asleep. But how do I feel in myself, today? Pretty good actually. I still get pain but it appears generally hackable. I sleep better and I feel my disposition is back to its sunny self (that's disregarding my behaviour while attempting to toast burger buns over the weekend). I had a haircut on Wednesday. I always get gip while sitting still in the barber's chair, but not this time. I went to a concert in Basingstoke and, for the first time in a while, I didn't spend the evening rubbing my stomach in a vaguely perverted manner, to the discomfiture of my neighbours.
The jury is definitely still out on cranial-sacral massage. I have had pain-free phases in the past but, eventually and invariably, it has come back to bite me on the arse. I read a book by the guy who started the whole thing, an American by the name of John Upledger, and was quite impressed until he wrote about his success in treating an SCI patient, but failed to go into any detail about his pre-treatment condition. He just started to walk. Miracle.
So I'll give it at least three months before passing judgement. It's not cheap - Trish charges £45 for each massage - but, since I appear to have run out of conventional options, I'm prepared to give it a go: the difficulty is that, as we all know, the body has no memory for pain. If it goes, it's like it was never there. I know I should keep a journal but after 24 years I, the professional writer, just can't be bothered.
But as Linda, my wife, says, who cares if it doesn't get rid of the pain in the long-term? Every three weeks you get a really good massage and feel great when it's over. Even if that feeling lasts only an hour or so, it has to be worth it. What's not to like?
She has a point. As usual.