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Melanie Reid of The Times (UK)

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    Originally posted by Fly_Pelican_Fly View Post
    She is a fast learner.
    She probably found this forum!

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      Originally posted by Timaru View Post
      She probably found this forum!
      My exact thought....

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        Like reliving the whole fucking thing again. I skip through her articles, reading bits of some none of others. Pretty depressing to me. At the moment, after 3 years and seeing many gains, my arms are weaker, cannnot work them because of weak rotators. My hands hurt constantly, even typing seems to fatigue me. Doom and gloom are squeezing me in. Thanks for the posts FPF. Another victim of this thing has been claimed. If you notice, she is hurting alot inside and the rage is building inside her as well. I just hope the paper will continue to allow her articles to be published at the worst of her emotional decline.

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          Originally posted by Timaru View Post
          She probably found this forum!
          Originally posted by LindaT View Post
          My exact thought....
          I wonder if she does read here. It IS the biggest sci forum on the net, so I'd say there's a good chance.
          Please say hello Melanie, if you are reading!

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            Horse Sense

            Try as I might to avoid it, the tricky issue of horse riding managed to ambush me when I was home last weekend. A girlfriend had spent hours bringing my clothes down from the upstairs bedroom and she and I were playing the now familiar game of Keep-or-Throw when, unexpectedly, the next item in the pile was a pair of riding breeches. She held them up and she and I stared at each other wordlessly for what seemed like a long time.

            “I just don’t know,” I said eventually. Another long silence. “You could put them right down on the bottom shelf out of sight.” She nodded, carefully expressionless, and did as I suggested.

            There are so many imponderables in my life right now. It’s bad enough dealing with ordinary clothes – they all seem at least three sizes too big, and after so long in T-shirts and trackies I haven’t a clue what fits my shrunken, sexless, uncooperative frame. What kind of trousers do I want? Realistically, will I wear a skirt again? Any chance I will ever need a standing-up outfit? And why, after so many years of wishing I could, does it hurt so much to chuck out the fat wardrobe and embrace the slim one?

            It is a form of identity crisis. Bad enough the acute sense of bereavement for that bouncy, leggy woman in skinny jeans and smart pumps, lost for ever; but now this, the sight of breeches and jodhpurs and riding jackets: reminders of my former happy passion, which force me to address stuff I’m nowhere near strong enough for. Requiring me to explore my feelings for the thing I loved so much, but which ruined my life.

            Several friends – and readers – have asked me, hesitantly, what my attitude is to horses now, trying to find out if it upsets me to talk about it and whether I’d like to ride again. Other people assume I ought to slam the door on the whole horsey world. My brother, seeing me reading Horse & Hound on a visit home, gave me the incredulous stare of he who visits the asylum and leaves in bewilderment and despair at the madness he finds. “I don’t like to say anything… but how can you enjoy that kind of stuff now?” he asked. And he had a very valid point. But then he’s not horsey. Untouched by the passion. I suspect my husband, too, probably loathes horses now, where before he tolerated, but is keeping a tactful silence.

            In truth, I don’t know what I feel or what I want. I equivocate. I’d like to be in a position to have a choice about whether or not to ride again. Part of me yearns to be close to a horse again, to bury my face in its neck and inhale its sweet smell. But the hurt and sense of powerlessness and loss that will come with that are terrifying. Apart from the fact I couldn’t reach the neck of anything but a Shetland pony, wouldn’t it be utterly selfish to put my family through the worry of seeing me mount a horse again?

            In a way, riding clothes and magazines are just incidentals. When I go home, reminders of a horsey lifestyle are inescapable: the stables, the riding arena, the empty fields, the vanity pictures of me jumping on the kitchen wall. If I want to escape memories of horses, then the only thing to do would be to sell up and move. And we don’t want to do that.

            It is actually quite a chewy debate, this: the relationship between a dangerous sport and its retribution. Horse riding, as Professor David Nutt, sacked head of the Advisory Council on the Misuse of Drugs, pointed out, is indeed more risky than taking ecstasy. But those who do it do so because it’s a passion, a thrill, a love affair. Because it brings that sense of being alive, properly alive, when you are pushing yourself and scaring yourself; because in a way there is an implicit contract with the devil – you know it’s dangerous but you are willing to accept and suffer the consequences. Because it’s better to be hurt doing something exciting rather than crossing a shopping centre car park or tripping over your own slippers. It’s the glorious arrogance of all risk sports: people who crash fast cars want to drive again; lone sailors who capsize yearn to return to sea; mountaineers can never resist the lure of high peaks. And they can be unlucky or really cavalier with fate.

            I am reminded of a good friend, a climber, high on Mt McKinley in Alaska, who made the decision not to go for the summit because he knew if he did so he would lose his fingers to frostbite. And who watched, in horror, as others went on and duly froze. Later, back in the frontier town nearest the mountain, he had a distressing encounter with one of them, an elderly Czech, who held up his rotting hands, too far gone to save, and begged for solace. Some nights, I too hold up my crippled hands in supplication to the blank hospital walls, and offer to barter my frail ability to walk again for healthy fingers and thumbs. A mother who lost her teenage son, and founded the Sandpiper Trust in his memory, sent me a book of hugely comforting poetry which I turn to at times like this. “The person who risks nothing, does nothing, has nothing and is nothing… only a person who risks is free.”

            So I admit: sometimes, when I am feeling strong, I want to ride again. If I achieve enough torso strength, I would like to take up the kindly offer from Riding for the Disabled and be hoisted onto a horse to see how I feel. Apart from anything else, the walking action of a horse is said to stimulate the core muscles and hips of riders. And on days when my bravado is high enough to allow new daydreams – which it hasn’t been at all lately – I contemplate doing paradressage. One young paralysed horsewoman, Emma Douglas, who was treated in the spinal unit here in Glasgow two years ago, is now, magnificently, a member of the British Young Rider Dressage Scheme alongside the able-bodied.

            But it all depends, I suppose, on how strong your passion is. Another friend, paralysed by a jumping fall, says it is not for her. After the glory and the speed of whizzing cross-country, she says, how could she go back to plodding around an indoor arena on an old cob, held in the saddle by helpers. Is the view between a horse’s ears the best view in the world under any circumstances? It’s another of those imponderables.

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              Crash and Learn

              A supremely pompous letter arrived the other day. Dear Melanie Reid, it said, some months ago I sent you a gratis copy of my book. As you have failed to acknowledge its arrival, I am writing again. Please reply by return, so that I can send you another copy and pursue the Royal Mail for non-delivery. I would be interested to have your comments on my book. I enclose an SAE. Yours etc…

              On the evening I opened the letter, all I could do was laugh, because I had reached that state of advanced icy calm that has always been my substitute for hysteria. My column, produced interminably slowly over three nights every week, on a laptop balanced on my knees, with either one or two fingers (depending how crocked the left hand is), was not only not written; it was already past its deadline. My laptop, my precious, slender lifeline to the world outside hospital, had been hijacked by rogues.

              Now, one of the advantages of working for a big company with computer security like Fort Knox is that one is usually totally insulated from the nasty world of viruses and malware; and therefore I was as a lamb to the slaughter with a ravaging beast called System Tools which claimed to have detected 38 viruses, had frozen my laptop, and sought only $65. At first I played the sympathy card. Listen, please, I addressed the screen pitifully, I am a desperate tetraplegic already working beyond her physical limits. I have an important, stylish magazine editor to satisfy. I have never downloaded anything dodgy in my life. I love puppies. I am kind to old ladies. I do not deserve life to be stacked against me even more than it is. Please cut me some slack. “Your’re [sic] entire computer is under threat, pay here,” blinked back the screen impassively.

              Even the techies got excited. “Aha!” cried the IT man in London. “This is the modern equivalent of the Nigerian bank scam.” “Oh no!” said his oppo in Glasgow. “This is a bad one!” And the poor chap spent two days trying to remove first the malware, then the dozens of viruses it left behind in every nook and cranny of my laptop, which leapt like rats from the proverbial sinking ship onto his computer when he tried to rescue my documents. He contacted me, late, late one night, sounding as emotional as a techie can get. Worst case I’ve seen in 12 years, he said. I’ve had to wipe everything and install a new operating system.

              In the middle of all this, as I say, arrived light relief in the form of the letter from Mr Doesn’t-Quite-Get-It demanding a response. To put you in the picture, every month I receive dozens of letters and cards, and a couple of books or the occasional small, exquisitely thoughtful gift. Of these letters, 99.999 per cent are messages of unequivocal support from strangers, so kind and so uplifting they bring tears to my eyes and resolve to my soul. Times readers are amazing people. But my powers of communication, outwith the reach of this column, are tiny, and my spare energy even tinier. I am in hospital fighting for a life. My hands are so damaged it takes me a seriously long time to open an envelope; I do not have a desk to write upon; nor a table to store stuff on. My nurses regard loose paper as the devil’s seed, a carrier of MRSA, and hide it away. I do not have a PA. Stubbornly, I have refused all offers of outside secretarial help. (And, likewise, Dragon speech recognition software. Please don’t nag me; it doesn’t work for me because I think with my hands as I type.) Instead I have vowed to reply personally to everyone, a process that will begin – assuming Windows 7 does not drive me to suicide – in a few weeks when I get home and have both space and a printer. That’s a promise. Even to the plonker with the book to promote.

              Not just computers crash. It’s a rule of spinal life that everyone has to tip their wheelchair over backwards at least once. So says my beloved physiotherapist Susan, with the pragmatism born of years of training people to get up off the ground. In the gym, they show those with strong enough arms how to do “floor transfers”, which is a polite euphemism for how to cope after you go home, drink alcohol, topple out of your chair and don’t have a couple of strong friends around to sling you back in.
              Last Friday evening when we got home from hospital, my husband unloaded my wheelchair out of the car but forgot to unfurl the anti-tippers (the stabilisers which prevent you going over backwards). Equally guilty, I forgot to check. With the result that when I hit the front door sill, going at some speed, I did a spectacular cartwheel back onto the newly laid concrete ramp outside. Dave, who was in front of me, turned, saw me going and tried to grab me. According to him it was just like the scene at the end of Titanic when Leonardo DiCaprio is reaching out to Kate Winslet in the icy water but he can’t stop her drifting away, for ever tragically out of reach. Not that my husband is remotely melodramatic, you understand.

              Anyway, I was extremely lucky. My skull miraculously did not whack the concrete; my neck was protected by a thick scarf; and only my shoulders got a little jarred. The hardest thing to cope with was DiCaprio, who had sadly morphed into Captain Mainwaring and was running around in circles convinced he’d killed me, while I sat on the ground, tried to disentangle my legs and said crossly: “Listen, stop panicking. I’m absolutely fine.”

              And I am absolutely fine. Back in the gym, I did my longest “walk”– ie, sustained shuffle on a tall frame – yet, maybe a third of the way round the gym. It ain’t pretty and it ain’t functional; but then I’ve always had this weakness for empty symbolism.

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                The Rogue Scriptwriter

                Cliché maybe, but “emotional rollercoaster” is the convenient shorthand we inmates use to describe life in a spinal unit. In the space of half an hour, you can go from a state of feeling positive about your future to one of absolute frustration and despair. The highs become lows in a heartbeat, and vice versa. Up, down, up, down, like being strapped to an out-of-control seesaw. All it takes is a tiny new bit of muscle function – did I really feel that flicker? – and you’re convinced you’re still making progress. One mediocre session in the gym, one instance when you can’t repeat something you managed yesterday – and believe me, every one of us lies in the dark and tests our limbs every night – and your spirits sink.

                Quite apart from the physical effort of rehabilitation, trying to remain positive in the face of this psychological torture is exhausting. I’ve had nearly a year of this draining soap opera of hope, joy, false dawn and frustration, and I’ve come to reject the term emotional rollercoaster as totally inadequate. No, it’s far more accurate to say that some rogue scriptwriter, some crazed maverick sacked from The Archers for suggesting Eddie Grundy should get caught cottaging, or that Ambridge be hit by a hurricane, has somehow got the job of controlling my life. I am at the mercy of this evil melodramatist, twisting and turning in the cruel wind of his imagination.

                For instance, I go to bed one night and discover, as I reach for my late-night medication, that I can raise myself up on just one elbow in bed – in other words, that my abdominal muscles are now strong enough to twist and pull me up onto my side. Happiness comes raging in and I fall asleep nursing its warmth. But during the night awful spasms kick in, making my knees jump in the air and lock over each other; and I am aware of a burning feeling in my bladder. Yes, fate has decided that even though I have very few precious days left in the gym, I must be afflicted by a urinary infection. Not going to achieve that mega-walk round the gym with the handbrake on, am I? Then, to add to my frustration, the test comes back from the lab saying my urine contains not one simple, common bug, easily treatable, but “unspecific contaminants”. So what’s that, apart from Environment Agency vocabulary? Diesel? Sheep dip? How deeply unsatisfactory is that? I fret and drink gallons of water.

                An hour later, my spirits soar again when a fellow patient, who has not been here very long, tells me how she has observed my walking improve. “When I first came, your feet just shuffled and the physios had to push them. Now, you’re lifting them clear and really stepping forward without help,” she says, unsolicited. “I see an amazing difference.”

                I feel an urge to hug her. For in always striving to move forwards, we all forget to glance back and see how far we have come.

                Then it’s home for the weekend, and I have deliberately organised an afternoon and evening without visitors. And what happens? The blizzards roll in – in mid-March; real soap-opera overkill – coating everything in heavy, wet snow and at 2.30pm the power goes off. As the light fades, I try to explain to my worried friends who phone that really, the prospect of sitting alone in the dark with the woodburner by the light of my iPad is not by any means the worst experience I’ve had as a tetraplegic. In fact, if I could only have found a head torch I could have got myself into bed.

                But a rescue operation is mounted; wonderful mates arrive in four-wheel drives with candles and hot water bottles; my husband rushes home from work early; while all I’m interested in is the heroism of the poor bloody linesmen, out in the wilds of Loch Ard Forest in the dark, climbing up the big pylons in blinding, horizontal snow to get power restored by 7.30pm. Please, please, I love you all, but I just want everyone to go away and stop fussing, so I can be my own, independent, coping self again. Except the reality is I’m kidding myself; I do have to rely on others. And I hate this more than I’ve ever hated anything in my life; it drives everything I do. I’m rational enough to know I’m never going to “recover”, as such; will never return to where I was; but I’m determined to shake off this crippling dependency.

                The malign scriptwriter gave me the chance to be exceedingly brave this week: I plucked up the courage to look at my neck X-ray. The idea of this has haunted me for months. I had vowed not to look at it until I could walk, knowing that if it was shocking it would slay my spirit. But an appointment with Jennifer Brown, the neck neurosurgeon who operated on me, allowed me to peek at the before and after images.

                The before was surprisingly benign-looking, just a slightly exaggerated bend and a widening at the C6 cervical vertebra at the front of my neck; one bone chip floating away. “Though I suspect we didn’t see the neck at its worst,” Ms Brown said, meaning it bent much further on impact but came back. The fresh post-op X-ray, taken last week, she was very pleased with; it showed the small metal plate she inserted had stabilised the joint and there was new bone growth.

                So I was up, buoyed, optimistic; then she asked me if I wanted to see the original MRI scan, and I said yes and immediately, internally, cursed the scriptwriter, because this image was horrid, showing massive collateral inflammation around the cord right up the neck. That seesaw again.
                “Looking at this, with the swelling up at C4 and C5, the outcome could have been so much worse,” my surgeon said coolly. In other words, I was lucky to have kept the use of my arms and hands, albeit impaired. So I left her room chewing on my good fortune.

                Please, whoever’s running me, will they just go and get a tacky job on EastEnders?

                Comment


                  Again thanks F.P.F.

                  She seems a little confused, not surprising I suppose if she's approaching the rehab. to home transition.

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                    Thanks for sending these FPF.

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                      as usual, my eyes always well up. She describes everything so well....
                      Emily, C-8 sensory incomplete mom to a 8 year old and a preschooler. TEN! years post.

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                        I can hardly remember my rehab but I like the way she is writing. And I have met many people when they are on the rehab hospital for the first time and talked with them.

                        But I don't think the rehab 40 years ago and today are the same I never learned anything about bowel program, there was no catheters, hard work 6 hours every day with two PT, yes, I had them alone 6 hours, 6 days a week for 6 month before I was sent home. And the quad stayed. They did live there for years, one of them still live there and I remember her from the first time I was there.
                        TH 12, 43 years post

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                          O dear. I hope this won't come across as if I'm having a go at Melanie Reid - who I have great respect for as an acute commentator on her condition.

                          Originally posted by Fly_Pelican_Fly View Post
                          Quote:
                          Originally Posted by Fly_Pelican_Fly
                          As I’m discovering, the world of spinal injury is no more immune to politics than any other; indeed, if one could walk, it would be on tippytoes between different agendas ...

                          ... there are various internet forums, where one discovers the serious politics involved in the whole issue of trying to walk again. For every dozen messages exhorting the need to work hard and never give up, there is at least one from the wheelchair user who has no chance of making a recovery and who reacts with weary cynicism to the evangelism of exercise. “I can’t think of anything that could degrade the public perception of people afflicted with paralysis more than someone hobbling up on stage and telling the audience that through ‘hard work’ and ‘perseverance’, they were able to overcome… Every time the general public hear this stuff about effort and willpower, they look at the rest of us as if we aren’t trying hard enough or we’d be up and walking too,” posted one.
                          That's the point that concerns me. There are plenty of right-wingers (not least on her own paper) queueing up to give disabled people a good kicking on the grounds that they haven't tried hard enough to get back to work, and Melanie (albeit unwittingly) provides a shining example of what determination can do to make their case. For those who are condemned to never get past the 'sticky keys' stage, the prospects are grim as the Murdoch-backed government begins cutting £18bn from the welfare budget, abolishing DLA and time-limiting the 'support allowance' - leaving many with SCI in despair and even more dependent on their families for financial as well as physical and moral support.

                          As for her 'Cuckoo's nest' anarchy, I for one have reason to be hugely grateful for the 'sclerotically bureaucratic' NHS which, for all its faults has provided me with many years of support, and the peace of mind that comes with the knowledge that my disability wasn't going to bankrupt my family. Meanwhile, The Times continues as the cheerleader for the privatisers pushing the anarchy of the marketplace to increase efficiency in the NHS (which takes around 8.5% of GDP compared with 17% in the US).

                          One wonders how long Melanie's ideology could survive were she entirely dependent on benefits that are being abolished and an NHS which is being dismantled. SCI can have a sobering effect on one's view of the limits of anarchic individualism.

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                            Originally posted by lifeonmars View Post
                            Melanie (albeit unwittingly) provides a shining example of what determination can do to make their case. For those who are condemned to never get past the 'sticky keys' stage, the prospects are grim as the Murdoch-backed government begins cutting £18bn from the welfare budget, abolishing DLA and time-limiting the 'support allowance' - leaving many with SCI in despair and even more dependent on their families for financial as well as physical and moral support.
                            Ms. Reid has written eloquently about her new life. There will come a time when she will have to write about something other than herself or I suspect the newspaper will stop sending her a comfortable check.

                            I admire her writing on her SCI. I sincerely hope, for her sake that her transition to writing about other things goes as well.

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                              Originally posted by lifeonmars View Post
                              As for her 'Cuckoo's nest' anarchy, I for one have reason to be hugely grateful for the 'sclerotically bureaucratic' NHS which, for all its faults has provided me with many years of support, and the peace of mind that comes with the knowledge that my disability wasn't going to bankrupt my family. Meanwhile, The Times continues as the cheerleader for the privatisers pushing the anarchy of the marketplace to increase efficiency in the NHS (which takes around 8.5% of GDP compared with 17% in the US).

                              One wonders how long Melanie's ideology could survive were she entirely dependent on benefits that are being abolished and an NHS which is being dismantled. SCI can have a sobering effect on one's view of the limits of anarchic individualism.
                              I assume a journalist of Melanie's standing has private medical insurance as a part of her remuneration package, why then is she being treated in a NHS institution at a cost of a million or so to the taxpayer?

                              Could it be the private sector is unable to deliver the standard of rehab. required by a patient suffering from a severe SCI?
                              Last edited by Timaru; 1 Apr 2011, 11:34 AM.

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                                She does have a great talent for writing!

                                Then, to add to my frustration, the test comes back from the lab saying my urine contains not one simple, common bug, easily treatable, but “unspecific contaminants”. So what’s that, apart from Environment Agency vocabulary? Diesel? Sheep dip? How deeply unsatisfactory is that?
                                ____________________

                                "We are the ones we've been waiting for. We are the change that we seek."
                                - Barack Obama

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