Stevie T – An Appreciation

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As you may have been made aware, here and elsewhere, my great pal Stevie has undertaken, this year, to run and fundraise on behalf of Spina Bifida Hydrocephalus Scotland.

His efforts have helped raise a hugely significant amount of money and I am so grateful for every penny and note of encouragement and awareness his initiative has raised. I am also immensely proud of my great pal and just to be able to call him my great pal.

Stevie first raised the idea of running the 2017 London Marathon for the charity in 2016 but postponed this while I continued the early stages of my recovery from sepsis in hospital.

It was ironic then that illness was to upset his own preparation and ultimately cost Stevie his participation in this year’s race. He still however cheered on the participants from the roadside.

Determined still to run and fundraise, Stevie chose to run a series of, arguably, more scenic races, all proudly wearing the SBH Scotland vest.

The races began on the Isle of Cumbrae where Stevie completed the 10 miles in 1 hr 13 mins 24 secs. Next up, was the 10K Men’s Run for Health through the undulating, no mean streets of Glasgow, finishing in a time of 42 mins 58 secs.

Preparing for the Isle of Islay Half marathon, Stevie picked up a calf strain, which resulted in him reluctantly pulling out of this run and the following months run on Coll. Thankfully, with both trips having been booked well In advance, he still travelled….

his physio telling Stevie to take every opportunity to stretch his calf…

In September, to round off a fine year in fine style, Stevie added the SBH Scotland 10k at Cumbernauld to his years itinerary. My intention to join him in the ceremonial victory mile was not possible, due to my ongoing health concerns. It has been a blow not to have made it to the roadside for any race.

In all, a magnificent £1473.70 has been raised across the year. As I mentioned earlier, we have both been blown away by the support you, our supporters, have shown us. Not just through that tremendous sum raised but also through the tremendous warmth and encouragement you have conveyed as we have both faced up to our personal physical challenges through 2018.

SBH Scotland have already registered their appreciation to Stevie. In their message to Stevie, they impress upon the important peer support work they carry out on behalf of those affected by Spina Bifida Hydrocephalus and this sum going a long way in ensuring this crucial work continues. In the past 12 months or so, my wife and I can personally vouch for the importance of this support. It is a great community and just knowing that you are not alone and SBH Scotland is just a phone call away, is such a comfort.

Knowing Stevie, I know he will not thank me for drawing attention to his tremendous will, spirit and infectious enthusiasm for life, generally, and his contribution to the fundraising effort. He is a tremendous influence to have in your corner but most importantly for me, a true friend.

I first met Stevie in 1997. He tried to sell me books. He’s also a tremendous salesman. When I moved from my first shop in Glasgow, to Edinburgh, then Aberdeen he duly followed. He was never anything other than an infectious wee pocket rocket tour de force. Its only very recently I’ve learned Stevie suffers nerves like the rest of us.

For the near ten years I spent in bookselling, I would never know him to have a bad day. At the conclusion to our negotiations, he would always threaten to take me on that evenings run. We never did manage. I don’t know why *cough*.

During my rehabilitation from the 2007 surgery, Stevie would visit and, no matter how hard a day I had had, his patter would win the day. He witnessed my terrible attempt at carpet bowls. I think he still made attempts to sell me (and my book-loving dad) books!

Leaving hospital, and moving back to Glasgow, Stevie, along with his partner Gillian, would encourage me to embrace Glasgow, its pubs, cinema or just a coffee and a chat at the Mitchell Library. Being a schemy Southsider, they even initiated me into ways out West – Oran Mor, The Botanics, Alasdair Gray murals… Gillian would also set me on the path to making a return to work. Their influence never allowed me to feel cut off – a huge thing in aiding me gain an acceptance and helping mould my subsequent attitude towards my disability.

Since my moving to Argyll, the bond may have moved more often than not away from the city, and the Bon Accord, The Mitchell and Byres Road, but our mutual love for music, ale, drams and this beautiful country of ours, prevail.

He’s just bloody good company, a genuine good egg. To have achieved what he has, this year, running on my behalf, for my nominated charity, I have been moved to wax lyrical. I hope he won’t mind?

Everyone should have a Stevie in their life. The world would be a better place.

The SBH Team

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I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

Photography: Stevie Thomson, Gillian Bell, authors own

I support and fundraise for https://www.sbhscotland.org.uk/ @SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment.

Throughout 2018, my friend Stevie Thomson has been running on my behalf for the charity. His considerable efforts have been met with such generous pledges and kind messages of support. The link is here

https://www.justgiving.com/fundraising/stephen-thomson9

Further donations are always welcome and greatly appreciated. 

Please see these links for further info, contact details and how you can support and be assisted by this vital, donation led charity.

Thank you for reading

 

Stream of Consciousness

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You join me today, some seven years on from my previous post, on a lengthy period of permanent bedrest. In 2016, I took a pressure sore which became infected and, but for the knowledge, skill and quick reactions of the NHS, well, I may not have been writing this now.

The infection, once known as the flesh eating bug, nowadays, yeah no less doom laden, as necrotizing fasciitis (NF) was ‘sensed’ during routine surgery by a specialist wounds nurse on the surgical team. In short, routine surgery became major surgery, as surgeons battled to, literally, save my skin.

https://www.nhs.uk/conditions/necrotising-fasciitis/

I had gone to the Doctors a few days before, shivery, the colour washed from my face, normal viral symptoms for me. Appropriate medication duly administered. The next day (Saturday) saw me lose appetite, lethargic, sick, temperature raised. If it had been left to me, I would have left it until the Monday to go back to the Docs. My wife insisted we did not wait until then and drove me to A+E. My wife saved my life too.

What had been no more than a spot on my buttock, with a slight discharge, a few days before, ultimately resulted in me having to have my coccyx removed, sacrum area and an extensive area of one thigh exposed. I continue to have these wounds dressed today. Like my spinal surgeon in 2006, these surgeons had no idea where their work on me would end. Leaving infected tissue and bone behind (on my behind) their greatest fear.

I was to be in High Dependency and Intensive Care in a medically induced coma for some three weeks, blissfully unaware of the multi organ failure this infection (sepsis) caused, and all the activity, concern, worry and uncertainty around my hospital bed.

https://www.nhs.uk/conditions/sepsis/

Dreams, when comatose, seem on another level to those you experience during regular sleep. More vivid, lengthy. I had never had recurring dreams until then. All of a similar theme. From the otherworldly to questioning whether you are actually awake; vivid visions of the people you love the most, apparently by your bedside, but making no sense whatsoever (what’s new?), in bizarre scenarios – from neighbours running an army assault course business(?), to me observing earth from thousands of light years away, floating, witnessing suicide bombings, rubble-strewn streets, floods, armageddon – I was always either floating around thousands of feet above, or at the bottom of a pit, observing, often frightened. I remember many of those dreams to this day.

Perhaps the most bizarre experience was seeing Glasgow Celtic crests intermittently floating around in my minds eye. When I came round, I mentioned this to my father in law who told me my designated nurse had ‘mistaken me for being a Celtic fan’ – I think family skullduggery was the real cause – and insisted on my listening to their games radio commentary, until my father in law decided (the time had probably come) to correct him.

The sprinkler system head and vent above my bed often took to speaking gobbledygook to me. Indeed, much of what I experienced in my dreamlike state, in later conversations with my wife, she could relate back, often vaguely admittedly, to what was actually happening and being spoken about in the ward.

How lucid I was, I’ll never know. But, I recall differentiating between night (they were always scary) and day and I will never forget the realisation I wasn’t dead. I felt a massive relief. How quickly I actually came round i’ll never know. My first real sense of awareness was returning from a scan and giving my waiting wife and mother in law the thumbs up. I have no recollection of going down for the scan. Among my wife’s first words to me were “Trump’s President!” N’ah, I was still under. Talk about waking up to a nightmare.

I’d spend Christmas in a surgical ward. Early indications suggest I be transferred to another hospital for skin grafts, but in the early shoots of 2017, I take a spinal infection which causes paralysis from the neck down. I am suddenly faced with further potentially life changing surgery, not to mention the loss of the use of my hands. Months of antibiotics would return some arm function and hand dexterity but reduced function generally remains today. All the while, my wounds continued to recover, my transfer to plastic surgery postponed.

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At a later consultation, my neurosurgical consultant would confirm the Spinal infection likely resulted from the surgical work required on my coccyx. He had never seen another case like mine. He eased my fears somewhat by also confirming that all that could go wrong in my spine, had now occurred. Now was the time to face up and challenge what life had in store. I remember speaking to a nurse, relating my spina bifida to a dormant volcano. For the first time in my lifetime, I had the feeling my spina bifida was about to erupt.

In all, I would stay in hospital for some eight months. The staff were never less  than phenomenal but I have never, mentally, been so low, and took all the self doubt, negativity, uncertainty and anger out on those I loved the most. Why anyone would want to visit me… ? I couldn’t face visitors, music, books, food, the things I loved most, for any length of time. I would often lie in my, by personal choice, darkened room, willing sleep as it was the only way I felt I could escape. I couldn’t get out of bed, back to hoists, catheters. My left leg now as numb as my right. I fought to keep my self propelling wheelchair. An electric or a travel chair being deemed more appropriate. But my consultant is correct, things can’t have gotten any worse. That is of some comfort.

I would leave hospital in May 17. Going home was such a boost though filled with continuing uncertainty regarding my health and quality of life. My treatment continues at home, I remain in a hospital bed and for the very first time in my life, my health dictates my day to day itinerary. I have questioned what have these past twelve years, my wheelchair years, and all the adjustments made, been for?

Just seeing my, now late, pet dogs reaction to my return from hospital, a moment to savour. That’s what it’s for. I’ve had many more since, despite the ongoing frustration.

There has been so much for my amazing wife and I, and our stoic families to get heads around. There were times we all questioned our ability to cope. We raised our voices, got angry, tears and snotters when we felt we had to. I spoke with counsellors, took the anti depressants, practised Mindfulness, often questioning for what?

For family, that’s what, for the joy of life.  In the last ten years, in my wheelchair, I feel I have been able to achieve and gain. An incredible wife and stepson, moving rural, continuing to work, my new friends, my old friends, travel. Life.

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I think today marks another breakthrough in my recovery. To be able to talk freely, openly, publicly and succinctly (I hope) about something which remains raw, bringing my own story up to date… I’m feeling good about that.

Yes, I remain in bed, open wounds, physical and mental, continue to be dressed and addressed, my wife remains, arguably and to my regret, more so my carer than my wife. It’s by no means ideal and while it remains raw, we prepare for setbacks. We have learned to look no further ahead than today. What used to feel all encompassing now feels manageable.

Our ability to absorb what life throws at us is often underestimated, dismissed even. Our response often taken for granted. We just get on for the sake of getting on. I think we should give ourselves a wee bit more credit for our ability to absorb, adapt and ultimately survive, if not thrive, from adversity.

In 2018, we have been able to enjoy a lovely summer, trips in the car to local beauty spots, or just down my main street for an ice cream. I read someone suggest just ten minutes a day in nature really invigorates a mindset. I live in a truly beautiful location and nature has truly been a healer, I have even paid attention to Monty Don and the Beechgrove Gardeners – my wife found great solace and comfort, while I was in hospital, in preparing a garden we could both gain so much from when I finally got home. Our new dog has been learning flyball, competing successfully with his new teamies all over the country. I have called in for help and advice on charities closest to my situation. It is a great comfort gaining a network. A dear friend has been running on behalf of, and raising an incredible amount for, Spina Bifida and Hydrocephalus Scotland. My stepson, through all of this, has, nevertheless, became a world champion and made his way through Uni to his Masters.

The Garden

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Champions

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I cooked seabass successfully and a passable crumble! It felt like my Masters. I have enjoyed putting together my blog. We have enjoyed bbqs in the garden with family and friends, impromptu music sessions in house with friends and a dram, precious time with friends and family I may not have had but for the skill, perseverence and professionalism of everyone involved in my care. It has collectively been another ironically invigorating experience to be a part of.

To coincide with the onset of autumn, the ‘ber months and’ the gateway to Christmas’ as my wife likes to call them, and with a new phase of my dressings treatment being administered I have been on permanent bed rest since late August, in a concerted attempt to heal what remains of my wounds. Its no quick fix. Estimates of the remainder of 2018 in bed and maybe then some time in 2019.

I’m relearning the enjoyment of reinventing myself, adapting to bed living. It’s no longer a relief to go to sleep. My love of reading and music have returned. I am enjoying visitors again. I have picked up my sketchpad, been learning some Spanish, researching some family history, enjoying precious family time, watching box sets, listening to some great radio, reconnecting with social media.

I had no idea I would write this. For the first time I have just let the pen flow. I now agree, it is the best way to write. It is also a cathartic experience. Acceptance of everything that has occurred in the past couple of years has finally dawned on me. I’m only too delighted to have you share that with me.

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I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

Photography: Bloggers own

I support and fundraise for https://www.sbhscotland.org.uk/ @SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment.

Throughout 2018, my friend Stevie Thomson has been running on my behalf for the charity. His considerable efforts have been met with such generous pledges and kind messages of support. The link is here

https://www.justgiving.com/fundraising/stephen-thomson9

Further donations are always welcome and greatly appreciated. 

Please see these links for further info, contact details and how you can support and be assisted by this vital, donation led charity.

Thank you for reading

 

Home-ish

 

My neighbourhood shipyard on the left

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The night prior to my discharge from the Spinal Unit, during my send-off party, my then partner called to say she, personally, could not cope with the new demands my needs would place on her. It was to prove to be the best thing she could ever have done for me,  though I admit, it did impact on the party somewhat.

Given our old flat In Aberdeen, it had been known for some time, in the circumstances, would be nowhere near suitable, the plan on discharge for me had been set to return to Aberdeen Royal Infirmary while an adapted flat was readied for me (us) on the outskirts of the city. Travelling to Aberdeen in the patient transfer vehicle, I already knew I couldn’t see any viable future there, given my job and now, at such a late stage, my relationship had ended.

Within a month, I would be back in Glasgow, living back with my parents, while my name and situation was touted around the local area authority housing lists. My parents lived two up in a modern tenement block. I had learned in hospital how to climb and descend steps with my calliper and crutches, and given the limited options, this was my only short term option. The three flights of steps were to become an early test of my mindset towards my disability. Thankfully, barring some initial wariness, the stairs were no deterrent to my coming and going.

Being in such familiar surroundings helped greatly in this early period of adapting to being home in a wheelchair. My parents and sister being on-hand helped with confidence. I would get around in the flat using my calliper and crutches and after initially trialling walking outside, I soon understood my wheelchair was the best option out of doors, given I was so slow on my feet.

Soon enough, I was keen to explore again. Any fear had been replaced by determination and a level of clarity of thought and logic I had never before known in myself. Scatter-brained just about covers my mind before all this. My mind was in tune with my disability, that was of massive comfort to me. Physically, it was now up to me.

Glasgow would prove to be of comfort too. Physically, given my level of disability, it was not too taxing and inspired me often to push myself further. Logic and research dictated my choosing routes and venues around the city most suited to me and my chair. Access and Toilets held the key to city rolling. I would often forego Public transport in favour of the push. The appalling state of accessible transport Infrastructure around the country is to our shame but this, inadvertently, would also encourage me to improve physically. Amazingly, even without a drink on a Saturday, Glasgow belonged to me, again.

I had read reports of resentment and the singling out of disabled people for public abuse and hatred in towns and cities but I have met nothing but kindness from all walks of life. I’ve never hidden away and rarely felt excluded. Those things which have always been most important to me socially, around the arts mostly remain, mostly accessible. Alternative arrangements can be arranged, asking for assistance is no hardship, and simply choosing not to go are all viable options.

I would spend the summer of 2007 at home, the summer of the Glasgow Airport terror attack, John Smeaton et al…

Towards autumn, I would begin to view some housing offers. Castlemilk – too hilly. The second offer, Elderpark… Govan really. Rab C Nesbitt and Wine Alley territory. But the flat – ground floor, in a ‘quiet cul-de-sac’ – appealed. Accepted. A true test centre to being singled out for anticipated abuse and hellfire. Bring it on, Gov….Elderpark!

It was leafy, the Elder Park itself on my doorstep, model boats sailed on the park pond of a Sunday. Waking up to the nearby shipyard horn calling in its workers, was always joyous, knowing there was still work on the Clyde that day. The local Library became an instant friend and nearby Braehead, where I had been taken to while in hospital to practice manoeuvring in public, was an always comforting place to return to, while the Spinal Unit often proved to be a halfway house to the mall. Old Govan Parish Church should be on any visitors hitlist for the historic stones

http://www.thegovanstones.org.uk/about.html

I’d also learn Govan is home to the best Chinese take away and Munchy Box I have ever experienced.

The Govan Munchy Box

fb_img_15371981721691I soon got to know I had lovely neighbours and generally, I’d learn that Govan folk, yes, are hard but fair-minded too. It cannot be beaten for community spirit in my experience and I have only great memories of the place. It seems its fortunes are on the rise. It should be held in a much higher regard among Glaswegians, Bohemian for sure.

By Christmas I was settled, positive and looking ahead with optimism. By then, I had strengthened and loved pushing my chair, along the Clydeside, to and from the city. Its the best form of exercise I have found. Gyms were trialled but the best exercise was the traipse to and from the sweat factory. I kept fortunately healthy and pain/spasm free.

New Year and a whole new old world to explore, in a sitting position. Culture became my.main motivation and going back to the GFT, Monorail, Waterstones and CCA brought me a sense of the old familiar, and the chance to see friends. This I found to be a further comfort in acceptance to my new situation. My friends saw me for who I had always been to them, not the disability. I was put at considerable ease with being made to feel like that. Confidence rising.

In January, I went to my first gig in a wheelchair…

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Some trepidation but the staff at the ABC were terrific and I was immediately at ease. I especially enjoyed being part of the crowd and not tucked away in a booth. The gig was amazing.

Over 2008, I prioritised ticking off a personal bucket list of venues and events to attend as well as educating myself with resources I could tap into. Bureaucracy was as much an ass then as it is now. I found importance in engaging with related charities and other contacts the Spinal Unit had introduced me to. I kept myself busy. Soon, such was the level of positive outlook, I would be considering the unthinkable just a few short months before, to return to some work or some study again.

Next Time: Challenge Your Battles Every Day

I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

Photography: Bloggers own

I support and fundraise for https://www.sbhscotland.org.uk/ @SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment.

Throughout 2018, my friend Stevie Thomson has been running on my behalf for the charity. His considerable efforts have been met with such generous pledges and kind messages of support. The link is here

https://www.justgiving.com/fundraising/stephen-thomson9

Further donations are always welcome and greatly appreciated. 

Please see these links for further info, contact details and how you can support and be assisted by this vital, donation led charity.

Thank you for reading.

Spinal Unit – They Can Rebuild Me.

I was really fortunate to have had no physical complications following my surgery, rather, the complexities were all largely in my head. How to process all of these inevitable changes in relation to lifestyle, work, home and play. I continued to have many doubts. Every aspect in my day to day being was now fairly alien to me. I would have to adapt to a new way of doing and be willing to compromise.

Since my surgery, getting to and from bed is one benchmark to my day living with the affects of a spinal injury. A sloppy transfer or a great transfer sets the tone to how I’m feeling within myself. It used to be I could spring out of bed, up and at them, with no thought required to that one process and with little sense of a milestone moment. Now, every aspect to this one task had increased significance.

One aspect is to lift my legs over the side of the bed. I realise quickly my arms are now my legs. The next stage in my learning was to transfer from bed to wheelchair. Prior to surgery I had got myself in and out of bed. My legs and body, in unison, just did this. Following surgery, I had been hoisted in and out of bed for a time, my legs dormant, I dreaded the use of the hoist for It meant I couldn’t come and go when I pleased or under my own steam, though it was better than being stuck in bed. The hoist was such an unwieldy contraption too. I recognised its benefits to many though, dignified it was not, dangling from the ceiling like Boris Johnson on a high wire. I couldn’t imagine life with such bufoonary.

To be fair, the physios shared my dubiety to any long term requirements and impressed upon me, from an early stage, their confidence in what would be achievable in preference to the hoist. Portability would be key.

In Glasgow, there was an urgency to increase my spatial range promoting greater personal independence. I was soon introduced to the banana board, a plastic board designed to support transferring across the space between a bed and a wheelchair. I was also measured for a full length right leg calliper brace as I could build up to take the weight in my improving left leg. Furthermore, I was measured for my wheelchair. MY wheelchair. MINE. It was all very surreal but filled me with some confidence I could achieve a level of independence, however long a way off that may be.

In quieter moments in and around the ward, I’d people-watch those with the ability to walk and question why the mechanics were now evading me. Those who could walk made it look so easy. I wondered how free I could feel in a wheelchair.

In the afternoons, there were usually wheelchair sporting activities I could get involved with. Wheelchair basketball stood out but tennis, archery and bowls were enjoyable too. Regularly, there were information sessions held, voluntary groups, benefits agencies and charities would promote specialist services and provide advice. Nursing staff presented the case for health and wellbeing. OTs plotted suitable housing. There was a whole new world out there to discover. Going from standing to sitting, how different could it be? I was soon under no illusions. For the first time, with all the support and guidance on hand, as well as seeing the will and determination of the patients in overcoming far worse challenges than I was facing, I began to gain further perspective. It was comforting to feel I wasn’t alone and indeed, I had options not afforded to others.

My arms would be the key to ensuring maximum independence. The strength I gain would support me in transferring, in taking the weight through my arms when walking with calliper and crutches, and my ability to push my wheelchair. I worked hard in the gym. Ultimately, that work would see me add 2 1/2″ to my neckline. I would have the neck of Mike Tyson and require a new wardrobe.

My wheelchair was custom made, sized to my body shape and a cushion selected to reduce the risk of pressure sores. It would feel comforting. A stock wheelchair, not fitted appropriately to your size and body shape does feel as ill fitting as a wrongly sized shoe.

For some eight weeks from being sized, you were on tenterhooks awaiting delivery of your ‘chair. I could not wait to get in it. For the first time in months it would mean I didn’t hesitate in considering going somewhere. Just that sense of freedom would be the galvanising factor in me learning relatively quickly to transfer without requiring the banana board. My confidence reaching new heights. This new world not feeling just quite so big anymore.

Another huge part in gaining independence as a wheelchair user is finding your wheelchair’s tipping point. This proves useful when approaching steps as it carries you over obstacles like pavement kerbs. This means, in bicycling terms, a wheelie. Inadvertently you soon learn an ‘endo’ – the opposite of a wheelie – is possible too.

To find your tipping point, the physios take you through a process;

  1. Getting comfortable with the basic premise of lifting your front casters off the floor. The physio attached to the chair, walking behind with a length of rope on the frame of the backrest while you whizz back and forward lifting your casters off the floor.
  2. While stationary, as 1. Steadily being raised off your front casters further until comfortable with the sensation at the point of tipping.
  3. Amaze friends and captivate future wife with ability to balance with such grace on two rear wheels.
  4. Learn to fall backwards (dis)gracefully and without injury when over cocky. Its the same principle as at the moment of impact in eg a car smash, where your body naturally relaxes into the impact. The only damage I’ve ever suffered following a fall is to my pride.
  5. Learn to pick yourself up from the floor and back into your wheelchair, sitting with your back to the chair. You learn to utilise every piece of your wheelchairs frame to aid your transfer. (George Square, Glasgow remains my favourite tumble, a council refuse worker applauded before helping me up.)

This is all achieved in the relative safety of the gymnasium. Transferring these skills to the pavement brings more challenges. Cambers, cracks, (wise-ass Council employees) and rounded kerbs are difficult to replicate and prepare for given each can be so varied on the street. Snow and ice you can only tackle when the conditions allow. The Spinal Unit is a safe house. It was somewhat daunting to consider life outwith putting all this learning into practice.

Gradually, the physios introduced you to going out. The calliper having been made, I was soon walking increasing lengths of the Units corridors, the goal being set to reach the coffee shop, just under a kilometre from the ward, with the promise of a roll and sausage the inspirational temptation. In the Wheelchair, my goal was to go as far as the local Lidl, to give me an idea of what I could expect maneuvering outside.

Soon, I would be doing my weekly shop there, a relief from the awful food they expected you to eat on the ward. Govan also had a plethora of take-aways happy to deliver to the ward, the staff kept a drawer of menu’s. This relieved palpable culinary tensions though the consultants would often remind you of maintaining good nutrition, yet you would never see them eat in the ward canteen. Funny that.

My time in the Spinal Unit would prove to be a hugely rewarding learning curve, the most intense, interesting and inspirational time in my life. The ward was so positive, you never had a moment to feel sorry for yourself, though frustration with yourself often bubbled away. One of the other patients would call across the gym ‘Go for it!’ every time you approached a new piece of apparatus or milestone. I soon learned the art of self-deprecation could bring positive mental stimulation. Being in Glasgow, there was nowhere to hide. The camaraderie was the making of me and my attitude towards my future with spinal injury all the better for it.

In all, following roughly, 5 months of intensive rehab at the unit, I was ‘ready’ for discharge. During that time, I met the most inspiring, brave, uplifting, committed and determined individuals I’ll ever likely meet in my life. They, staff, patients and their families alike, helped change a potentially enormous negative into THE greatest positive. Disability needn’t be an end, in my experience, it can also lead to many new beginnings. I give thanks daily to all involved in my care, recovery and keeping me sane, to all friends and family who were there for me and stuck by me throughout such a testing time, and to those of you since who i have met and caught up with, laughed with, enjoyed a pint/dram/meal with, frustrated, ran over the toes of, broken the toilet seat of, assisted me after taking a tumble (all too numerous to name check), ripped the sink off your wall (1), fell in love with/married (1)….you all know who you are. You help keep me going/positive every single day and just saying, I’m grateful to every one of you.

I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

I support and fundraise for https://www.sbhscotland.org.uk/@SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment. Please see links for further info, contact details and how you can support this vital, donation led charity. Thank you for reading.

Physio – an introduction

Aberdeen

The night post surgery I slept soundly and woke up feeling refreshed, relieved and comfortable. No pain. Soon after breakfast, two ARI physios had soon introduced themselves to me. The conversion from recovery to rehabilitation was about to begin.

I was still attached to various surgical appliances and monitors. I was being given a briefing on what the physios were here for, but I wasn’t really getting my head around them being here today, less than 24 hours after 8 hours of surgery. And what about all this stuff attached to me? I seemed to be the only one worrying.

It soon became clear that they weren’t just here for a nice chat. After the sharp/blunt test, where they use both ends of a pin to ascertain your levels of sensation, In my case this was across my entire body – above the point of spinal injury won out handsomely to below; the lead physio then said they were going to get me to sit up on the side of the bed.
By this time, I’m looking for the hidden cameras. This must be some kind of joke?

This was happening. I was instructed to rise slowly from my lying position. Once or twice I made for a grab of the hand rail but reasonably confidently, I soon sat upright. It felt brilliant. I said hello to my ward neighbour opposite, first time seeing him. He offered me his newspaper but there would be time for that later.

Once acclimatised on my lofty perch, I was asked if I could cup my left hand under my left leg and lift my knee towards my chin? I knew how much weaker I had become so this in itself was another test. In your negative to anything physical mindset, you instantly dismiss this as preposterous – Physiotherapy School must have a Crazy Talk module.

Tentatively and prepared to strain, I gritted my teeth like the great weightlifters and ‘heeeurrrgh’, there was no great resistance, my knee was coming towards my chin. Now I was asked to lift this leg over the bedside. I was doing this too. Adrenalin and some incredulity coursed through me. More confidently, my right leg soon followed. I was sitting up on my bedside, feet dangling and it felt like like one of my life’s greatest achievements.

From this point, I understood I would have to disengage with every aspect of how my life used to be with spina bifida. This was spina bifida catching up with me. Now I was beginning to have to face up to its inevitable impact. Every body movement was now being taken back to its component parts. Forget everything taken for granted before. I was prepared for the fight.

I soon took solace from having had some 30 years on my feet. Most people with the condition are not given that opportunity. I had a level of independence few with the condition can have too. Now I too would have to adapt. I vowed I would continue not to let spina bifida define me no matter what it may have in store. I have since heard of other people battling to thwart the anticipated outcomes of their own medical condition, attempting to outwit medical science. This inspires me. I was determined not to settle on these laurels. Loving life and a strong work ethic were instilled in me. I could still be independent. I could still be me.

In all, I would spend around a month in hospital in Aberdeen. The physio team continued to encourage me, albeit with limited resources. I was soon given an upper body work out plan to follow, increasing the strength of my arms, along with little movements on my bottom to improve balance, core strength and coordination. My left leg was responding very well, a range of flex was returning which gave me some belief that hope was not lost there. Really though, it was also time spent waiting for an available bed in the Spinal Injuries Unit.

Glasgow

The morning of my transfer and for the first time in my life, I really didn’t know what to expect from my home town. What would the SIU be like? This didn’t sound like just another hospital ward. Would I have a room to myself? My final week in ARI saw me move to a single room. I never felt nervous going back to Glasgow. This was different.

The patient transfer vehicle I was in, I shared with a wheelchair user who had a clinic appointment at SIU. I got talking to her and explained how our respective injuries had come about. She was attending clinic having been a long term patient a few years before. Three hours soon passed by as I bent her ear about what to expect. She was entirely positive of her experience. For the first time I took notice of someone’s wheelchair.

On arrival, the unit seemed empty. Two corridors, receptionist-free reception area, empty glass lined meeting rooms and a day room opposite with no one using it this day. It was so quiet.

Round another corner and suddenly there was a buzz about the place.
“Hi, just in there, thanks” I was directed into a manic room of animated discussion and high jinks, noise I had become unaccustomed to in my time in hospital. Yes, this was Glasgow. I was instantly terrified.

I tried to remain incognito but the guys soon introduced themselves to me, one or two in wheelchairs, a couple seemingly permanently in bed and a fifth guy on his feet, age range teens to pensioner. I was the new blood. I just really wanted to read my book.

After being checked in and a limp sandwich, I met my new physio. He gave me a tour of the gymnasium. All expectations were instantly blown. This was incredible. Specialist exercise and lifestyle equipment designed to give me the best possible chance of regaining my independence. This would be my workshop. Prepared to graft, I instantly felt settled, motivated and assured this would be the making of me.

After assessment, there would be three main outcomes which would define the level of success during my rehabilitation; to walk again (with or without aids), to make full use of a wheelchair, and to learn to live independently.

The next day you find me strapped into a wooden frame, from the waste down, standing on my feet for the first time in a month. Designed to fool my brain into believing that I can stand in the hope that the brain subsequently restimulates damaged or dormant nerves, this would be repeated half an hour every two hour physio session.

This was also the time I would spend on the orthodox looking cycling machine, adapted to include an electronic drive, again, designed to fool the brain.

The gym was a hive of activity. Patients at various stages in their own rehabilitation programme, alongside those with from birth injury were those fighting back from eg motorcycle accidents, poolside slips, rugby scrum collapse, a 200 foot fall off Arthur’s Seat; these patients were those now tentatively walking between parallel bars, learning to transfer from their wheelchair into the front end of an actual Ford Fiesta, another learning the tipping point of their wheelchair, others walking with the aid of a cast, sticks or getting used to a new neck and spinal brace.

The upper body work was just as important here. I soon got to know all the physios, one of whom was a national level Rugby player, incredible physique; his nickname was ‘Buses’ given his resemblence to the side of one. He never let me rest on my laurels but I’ve never laughed so much either while pummelling a bench press. I soon learned the threat of his singing voice would see me automatically add another weight to the bar. All the motivation was in not hearing him sing.

I never had felt comfortable with attending the gym. I loved the outdoors too much for a start and I soon bored myself of the routine and monotony of waiting for the person using the apparatus you want to use next. A bike ride or a good walk was far more stimulating. But this gym was inspirational. You soon made friends as there was a culture of encouragement among patients who understood precisely what you were going through. Little miracles were occurring before your own eyes every single day.

Surgery

Spina Trivia;

Skeletons discovered in a cave in Taforalt, Morocco showed signs of spina bifida – bones dating back to 10000 and 8500 BCE

From Spina Bifida by Stephanie Watson

https://rosenpublishing.com/product/spina-bifida

November 16th 2006, I recall it being an unseasonably mild, beautiful, blue sky morning in Aberdeen; The kind of day which brought the unique architectural sparkle out in the Granite City; in a city not often recognised for its bling, quite a spectacle.

I had been nervous for months about the upcoming surgery – time off can do that to you. Books and music filled the void somewhat though my usual appreciation for such pastimes seemed to have been diluted by my glass-half-empty mood and prospects for a successful surgery.

I had been in contact with the surgeon, through face to face meetings and, here’s a thing – writing letters, basically asking for all the reassurance he could muster. Instead, I would find his responses to be professional and courteous, and somewhat reassuring, but there could be no guarantees. I was informed it would be 60-40 in my favour for a successful outcome.

A successful outcome would be to return my mobility levels to somewhere approaching those prior to the slip and fall on ice.

The procedure was called a Laminectomy.

‘Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal. Also known as decompression surgery, laminectomy enlarges your spinal canal to relieve pressure on the spinal cord or nerves.’ (Source: https://www.mayoclinic.org/tests-procedures/laminectomy/about/pac-20394533)

The surgery would likely take up to three hours and my stay In hospital would likely be for two weeks. I packed accordingly;
Book: The Silver Darlings by Neil M Gunn
Music: My Sony MiniDisc player; Jesus & Mary Chain, My Bloody Valentine and Shoegaze
Magazines: Mojo, National Geographic
along with the usual toiletries and change of clothes.

Given I’ve spent plenty of time in hospital, this still felt nerve-wracking. I had been fortunate to have escaped major surgery up to this point but I was under no illusions that this was a potential life-changer.

On arrival at the hospital, I had some time to wait for a bed, but the nurses were attentive and I was soon to learn ARI served consistently good meals for patients, indeed the best hospital food I have ever had.

After lunch, and having been allocated a bed, I was feeling far more settled and relaxed than It felt like I had at home, for months. The nurses have that knack of offering the same reassurance you tend to brush off from family members, but it somehow means more coming from them.

After being briefed by the surgeon and the anaesthetist, I had most of the afternoon to myself. I began reading The Silver Darlings and having had such a long build up to get here, I was now strangely calmed by finally, actually being where I had been dreading being, for so long.

This proved to be something of a false dawn for the fear that would follow. Later that afternoon, the ‘nil by mouth’ sign went up by my bedside. I love my grub. Then, the surgical procedure called for me to be taken for an EMG…

There are 31 pairs of spinal nerves which are grouped according to where they leave the spinal column. There are eight pairs of neck (cervical) nerves, 12 pairs of upper back (thoracic) nerves, five pairs of lower back (lumbar) nerves, five pairs of pelvis (sacral) nerves and one pair of tail bone (coccygeal) nerves. It is important for the doctors to detect any abnormality in these nerves’ function when dealing with spine problems. The specialized nerve tests like EMG, NCV and SSEP are designed to diagnose any abnormality in the functioning of these nerves. These studies investigate the functioning of the nervous system, while imaging studies like the CT scans or MRI scans look at the structure or anatomy of a particular body part or organ.

EMG, or Electromyography is a technique for evaluating and recording the electrical activity produced by muscles. EMG is performed using a machine called the electromyograph, to produce a record called an electromyogram. An electromyogram detects the tiny amount of electricity generated by muscle cells when they are activated by the nerves connected to them. Specialists analyze these signals to detect medical abnormalities in the spinal cord, nerves and the muscles that are connected to specific nerves.

There are two types of EMG: intramuscular EMG and surface EMG. The intramuscular EMG is the most common. It involves inserting a needle electrode through the skin into the muscle that is being studied. Surface EMG (SEMG) involves placing electrodes on the skin over the muscle to detect the electrical activity of the muscle.’
(https://www.knowyourback.org/KnowYourBack/Treatments/AssessmentTools/SpecializedNerveTests)

The EMG meant I be taken pre-op to a darkened room, not unlike a recording studio, banks of technology surrounding a chair placed in the centre. I was to sit there. Two specialists with laptops then methodically began dabbing a glue to strategic spots on my head before attaching a number of wires which led to points down my spinal cord and specific areas of my legs where electrodes were stuck on to my skin. (I felt I suited dreadlocks!) This would inform the surgeon whether he was in danger of severing a nerve during my op. Surgery would not be unlike the boardgame ‘Operation’.

This procedure in itself took well over an hour and I went back to the ward with renewed apprehension. The evening and overnight proved to be restless and sleepless. I watched the sun rise.

I was ‘first up’ for surgery and it seemed like it was no time before nurses and the surgical team were swarming around my bed in preparation for me being moved to theatre. Once there, one short, sharp prick of anaesthetic would make me blissfully unaware of the surgeon’s work.

On being brought round, it was immediately obvious to me that it was dark outside. I had been in theatre some eight hours. Over tea and toast, the clearly exhausted surgeon explained it had been a far more complex procedure than the scans suggested. He had found cysts and tumours prevalent and, as he cut, he was having to work his way further and further up the spinal cord than he had anticipated, removing these unexpected growths – “I didn’t know where it would end” he would admit to me. Now, I was faced with a nervous wait to see whether the cysts were benign or malignant.

I was numb, thanks in no small part to the morphine, but also due to having no function in my legs, not to mention the threat of a cancer diagnosis hanging over me.

Over the next number of days, the surgeon and physios combined with a number of tests to ascertain my level of function. Gradually, my left leg responded to this probing and sensation and some mobility returned. My right leg remained numb though. I would remain in bed over a long weekend. My ward mate took great delight in an unbeaten run against me at Chess.

I had acquired more than fifty staples up my back, gunk in my hair, a loss of bladder function, concerns about the bowel, as well as concern over how I would be physically. Given all that, I was just relieved to have come through the surgery.

Spina Trivia – Famous and born with spina bifida;

Roald Dahl

Dame Tanni Grey-Thompson

John Cougar Mellencamp

Frida Kahlo

Improvement came on a daily basis as I was allowed some time each day out of bed. I was to learn to appreciate the most basic aspects of life, all the while under no illusions it would be a long haul back to health. Soon, the glue was washed from my hair, I came off the morphine; I was pain free, the staples removed and the Histology report showed no cancerous cells. All positive.

Physically, my right leg continued to show no response but my left leg continued to improve. For the first time I would hear phraseology such as ‘paraplegia’ and ‘incomplete’, and the Spinal Injuries Unit (Glasgow) being intimated as a likely destination for continued, more intensive, specialist rehabilitation and guidance than they could facilitate in Aberdeen.

After a week or two, during which time there had been contact between ARI and QENSIU, I was just about to settle down for sleep when, with the ward in darkness, a figure appeared at the bottom of my bed. “Mr Spalding?”

Mr Fraser, consultant in Neurology, had travelled to Aberdeen from the Spinal Injuries Unit, in Glasgow, following a day of neurosurgery, just to meet with me to discuss my impending transfer for physical rehabilitation to the Unit.

After half an hour, having carried out a physical assessment, made clear the next steps in my progression and describing the set up of the Unit, he shook My hand, thanked ME for MY TIME(!!), and left for Glasgow – some three hours drive and likely, given the lateness of the hour of departure, a 2am arrival home. And I felt more knackered than he did!

I remain in total awe of the dedication our health workers commit to the cause, and it’s not just that visible presence on the ward. I would soon learn my newly acquired Consultant and his team would epitomise this commitment, and then some!

Next Time: Return to Glasgow

I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

Photography: Bloggers own

I support and fundraise for https://www.sbhscotland.org.uk/@SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment. Please see links for further info, contact details and how you can support this vital, donation led charity. Thank you for reading.


Numb.

Spring forward some twenty years, from the early 1990s to virtually noughties-eve and you find me living and working in Aberdeen. I had, since 1997, been fortunate enough to have been working in the bookselling trade, the closest I’d ever come in my working life to that idea of turning a passion into a career. It was a real pleasure getting up in the morning knowing you were heading in to an energised, constantly evolving working environment, surrounded by books. My colleagues in my time In ‘the trade’ , remain some of the most creative, dynamic, fun, informed and influential individuals I have ever found myself in the company of. I would meet authors I admire, the likes of Jim Dodge, Don DeLillo, AL Kennedy, Alasdair Gray and Jeremy Bowen. In Aberdeen, a hero, Billy Connolly would buy his favourite book, A Confederacy of Dunces by John Kennedy Toole, for a colleague while I stood there, just grinning like a Cheshire cat, totally starstruck, we’re not worthy, “eh, I’m from Glasgow too, you know”, from me. And being at the coal face to the whole word of mouth, unprecedented publishing phenomenon surrounding JK Rowling meant for unprecedented levels of interest in books, midnight openings and record takings at the till. Good times.

Good Book

I had moved to the Granite City in 1999, after bookstore stints in Glasgow and Edinburgh. I was in a relationship at the time with a local girl and soon felt settled there. It also proved to be a good career move for me. Aberdeen is a beautiful city, great parks, the beach, Footdee, The Belmont cinema, Cafe 52 and One Up Records just a few of my favourite haunts. There are so many bookstore highlights from my time there: The Caramac Challenge – two intrepid colleagues attempting to eat up to 50 Caramacs in a lunchtime, just because – needless to say, it turned messy: The Giraffe Bike feature In the local paper; ‘Robocop’, our mall security guard, fighting crime by usually hiding out in the centres back passage ways, occasionally popping his head through a deliveries door, quizzical look permanently etched on his face, wondering how he had got to here, startling employees much more regularly than any criminal. For apparently, by reputation, such a dour city, I never found it that way and friendships forged there remain deep rooted to this day.

By the mid 2000s there was still no noticeable impact of my spina bifida on my quality of life nor had it any impact on my work, often I would be lifting heavy boxes of stock up and down stairs or moving display tables, while on days off, I spent a good deal of time getting my golf handicap down to 12, carrying my bag round 18 holes. People in the central belt think I’m daft for stating that Aberdeen is the sunniest place I’ve ever known in Scotland and statistics tend to back that up, so it’s true. Mind you, the winters could also be the wintriest. It was during one such wintry spell my spina bifida would finally come to impact on me.

Home at the time was a twenty minute walk to work and it was on only the rarest of occasions I would ever take the bus. This morning, I had woken to a blanket covering of snow on the ground. I have always been wary of slipping and never seemed to have the right footwear or contact with the ground, for coping with the underfoot conditions, particularly on snow and ice, but just taking my time seemed to work. On stepping out, my first tentative steps made me think that this was a morning for the bus. The bus stop was a couple of minutes walk away. I lived on a street in a built up area, well populated and usually, for the morning commute, you would expect to have company. But this morning, I remember how quiet it was, a snow day for those non foolhardy, fair weather folk who exist, even in the North East of Scotland.

I plodded on. Before the bus stop, there was a left turn I would normally take on my usual walking route. On reaching this junction, I momentarily considered forgetting about the bus and save myself the £1.20 fair. But the subsequent sound of the bus coming down the road made the decision for me. I momentarily forgot my discipline on the icy path, speeding up, lengthening my stride to get to the bus stop in time. Down I went. My full upper body weight compressed down on contorted, twisted legs, entangled to such a degree, they would have done me proud in a game of Twister. The bus passed with no one at the stop. I was alone, in some shock, numb, waiting for the pain to strike. I was sure, given the extent of the twist in one leg in particular, with my knee pointing due west and the ankle on an easterly trajectory, I had broken it. But, I would feel nothing, just numb. Even so, I begin to panic. I looked around for someone, anyone to help me but there was no one, just me, numb. I dragged myself to a little wall, managed to sit myself up on it and untangled one leg from the other. Again, expecting pain but no, still numb. I rubbed vigorously up and down both legs in a vain attempt to revive them but there was no sensation. Numb panic. This lack of sensation seemed to last for ever but the sound of the next bus revving to combat the untreated road seemed to revive my senses somewhat and, still not wishing to be late for work, I steeled myself to try and stand. Somewhat miraculously, I thought, I managed. No pain, no longer numb. I gladly made this bus, the best £1.20 I had ever spent.

Later on that same day, on what up to this point had proved to be a normal working day on the shop floor, I suddenly felt a split second sensation, not unlike an itch, float across one knee cap. Down I went. This time, I was immediately able to pick myself up, with no need to uncouple my legs, but I was concerned the two events of the day were connected. Yet again, as no permanent damage seemed to have been done I carried on regardless.

Some weeks went by before this itch and subsequent fall reoccurred. I saw a GP and was sent for scans of my knee but nothing showed up . From this point on there was no set pattern or reason I could give for falling, other than an itchy kneecap, cracks on the pavement became a hazard. Over time, my mobility began to deteriorate to the extent where I could only climb steps from the use of a rail – I recall once having to get on my hands and knees to step up from the road onto the pavement (please, no blocking drop-down kerbs). In work, I was soon given the affectionate and admittedly appropriate nickname of Wibbles, from the Wibbly Pig character, being so uncertain on my feet. A brief moment of humour in an increasingly dark tunnel.

Wibbles today, there for the journey.

Being so stubborn and scared now about what was going on, I left it until I really had no other option but to return to the GP.

I was given a set of crutches while arrangements were made for more scans. For the first time in my life, my spina bifida was mentioned as a possible cause. I was off work, feeling more and more isolated, my relationship was at a low ebb and fear gripped me. Uncertainty engulfed my whole being.

Eventually a letter arrived for an appointment with a neurological consultant. Thorough checks were made over a number of weeks, and scans showed an abnormality the surgeon wished to take a closer look at. I was facing complex surgery but waiting times meant a six week wait. In this time I would develop a pressure sore which pushed back my op date from the June to November ’06.

More time to think the worst, further isolation and a lengthy sick note. Suddenly, the op could not happen soon enough.

Current listening

Next Time: The Op and back to Glasgow.

Life isn’t about what you don’t have….it’s what you do with the gifts you are given – Tatyana McFadden (spina bifida Paralympian).

I am blogging my own unique experience of spina bifida to highlight a relatively little known yet no less significant condition to those born with the condition and their families. I hope that my experience can offer a positive view of life with spina bifida.

Photography: Bloggers own

I support and fundraise for https://www.sbhscotland.org.uk/ @SBHScotland in the exceptional work they carry out across Scotland, in a challenging funding environment. Please see links for further info, contact details and how you can support this vital, donation led charity. Thank you for reading.

Spina Bifida, Glasgow and Wee Me.

When I was little, I knew I had a condition called spina bifida but what it was, I was only ever told I had ‘a twisted spine’, and never having asked any more than that, while being too young to really care, my parents kept it low key, and that was OK by me. I went with the flow, it sounded exotic and i never really found out what IT was, until the condition really started to catch up with me later in life. Back in the early 1970s, all I knew was I was walking at the age of 11 months – it felt like the most natural thing in the world – and the world was my oyster. That was good enough for me. If this is spina bifida it felt as though its affect on me was no worse than the common cold.
Today, I look at my life as having 2 parts, the pre surgery part (to 2006) and the post surgery part. What doesn’t kill you makes you stronger, so the saying goes, and I can vouch that this indeed is the case. As a kid, I felt I was never up for any fight, literally, and shied away from the tough guys, gangs and conflict generally. One of the few punishment exercises I would receive in class was for ‘I must not hum the themes to popular TV sports shows in (my) Maths class.’ Mr Coyle blotting my otherwise exemplary copy book in one fell swoop, the heathen! Little did I know then the battle I was overcoming daily was a much greater battle, with my physical self.
When born with spina bifida, statistically, you really should be spending your life in a wheelchair. In the UK, neural tube defects, such as spina bifida, affect one in 1,000 babies (source British Isles Network of Congenital Anomaly Registers (Binocar), a lack of folic acid during the period of pregnancy is thought to be a main cause of spina bifida. The higher the defect (in the spinal chord) the greater the complications (my defect is at t11, around the base of the chord). Those who walk in childhood have a 20–50% chance of becoming wheelchair dependent as adults (Myelomeningocele: neglected aspects
Christopher R. J. Woodhouse). A spinal injuries consultant, not my consultant, would tell me casually and in no uncertain terms that I really shouldn’t have had a life at all, insisting the advice “nowadays” to expectant parents, on discovering spina bifida in the womb, is to “terminate the pregnancy”. How cold and I have not, thankfully, read nor saw any clinical assessment pertaining to this action since. Some ten years have passed since this ‘consultation’ and every day I survive and thrive, I flick an equally well-intentioned v-sign towards this level of uncharacteristic doom-mongering, the NHS for 40+ years have been magnificent to me.
Spina Bifida need not define who you are or what you can be. Spina bifida would have no physical affect on me until I reached my mid 30s: all that was noticeably different to me, compared to my school pals was a slight limp, some (ahem) “puppy fat” (unconnected) and a large, disproportionate head (hydrocephalus) – the publication of the official class photo was always traumatic and the film So, I Married An Axe Murderer didn’t do me or my ego many favours either (see photo)

I played football, sport mad generally, mountain biked corbetts and climbed the odd munro, fell from the odd wall, normal childhood stuff. I used to walk pretty much everywhere – my home town of Glasgow remains a thrilling place to walk/spin round. I had some more time off school than most of my friends due to hospital check ups and the odd stay, being more susceptible to infection. I was exposed regularly to the horror of needles and blood tests from a young age, none of which was ever related back to my spina bifida, to the extent that the syringe remains a phobia to this day. I can’t watch Casualty. At least this helped put my parents mind to rest that I would never be an addict.
My ability to walk gave me opportunities few with my condition would have been given, especially so in the more segregated 1970s and 80s. I used to walk to school and on my way, would be passed by the local ‘special school’ bus taking pupils to class. My naivety then made me look upon those kids as being different. My advantage over them was purely that my disability was hidden at that time. My school friends never looked upon me as ‘being different’ (to my knowledge) and there was nothing I couldn’t do (apart from ever learning to swim) which prevented me from the ignominy of being singled out. I am so grateful for my good fortune of having good friends, strong family support and the abilities having a spinal injury rarely offers those affected.
Academically, I never fully engaged with many subjects, English and Modern Studies being the exception. It was never down to my health I struggled with school, purely down to me. I really wanted to go to Art school but my Art teachers scoffed at such a prospect. Secondary school I drifted through believing that I would end up following my Dad into the railway but, during this time (under the iron fist of Thatcher as PM), my old man’s advice was that the railway “was finished”. That finished me as to having any idea of what I could seriously put my by then scatter-brained mind to.
Finishing school, I knew I loved music and movies, sports, books, reading the history of the Middle East, Billy Connolly, St Ivel Gold butter with Gammon on a roll, Beef Monster Munch, The Eagle and Roy of the Rovers, NME and Melody Maker, proper snow, BMX, writing and receiving letters, making up sending and receiving mix tapes, Cheers and CHiPs, John Peel and Andy Kershaw radio shows, model railways and Subbuteo, Panini sticker albums, new year all nighters with friends and neighbours… but how I advanced these interests into a skill, I hadn’t the foggiest!

A YTS would sort me out. £27.50 each week working for a concession in Burtons was to be my underwhelming introduction to working life. I began to explore Glasgow a little more, being more regularly in the town. Missing Records, Hoi Polloi and Flip Clothing became regular lunchtime haunts. I bought books from The Softback Preview, a mail order company who would entice you with a monthly catalogue of books! That £27.50 went a long way towards feeding my increasing late teenage vanity as well as my knowledge and increasing love for reading. After a year in retail, I was offered a contract but I had an itch for unfinished business with academia, got a measly grant and, the world still being my oyster, went to Cardonald, to study Media & Communication. It was academically a bad choice as the subject range was so broad, I dismissed most of the course, but through class mates, discovered the music of James, Wedding Present and The Fall, and learned to appreciate the cinematic works of Bergmann, Hitchcock and Jarmusch and the genre of film noir, so it wasn’t a complete waste of a year.
1990 came with Glasgow celebrating its year as host city to European Capital of Culture. That year I turned 18 and culturally, Glasgow had never known anything like it, suddenly the place felt cosmopolitan and European. Suddenly locals were seen eating and drinking (legitimately) on the street on pavement cafes, this even seemed to confuse the constant rain the city is notorious for, to think twice before falling: bars and clubs had extended opening times, music, cinema, art was everywhere, the city architecture cleaned up a treat, people were confident, outgoing and no longer passing people looking down at their feet for fear of confrontation – ‘the square go’: rather than ‘wine alley’ we now had a ‘style mile’. Glasgow had well and truly cleaned up its act, a city to be intensely proud of. No Mean City spectacularly transformed itself into Glasgow’s Miles Better, Scotlands cultural capital and I lapped it all up. My increasing confidence mirrored that of the Dear Green Place. Glasgow had a greater influence on my life than spina bifida would ever have.
I have come to learn that with spina bifida nothing physically gets better with age but the life you live can be a hugely fulfilling one. I certainly feel that my experience with the condition is sympathetic to this idea. However, the life I feel privileged to live continues to extol many positives, being now in my mid 40s and having the confidence in my health and self to move on from Glasgow. Unlike my carefree childhood, things physically, perhaps inevitably, began to change in my 30s and I am now continuing to adapt to the increasing influence spina bifida has on me, to live life day to day. I face a very different set of daily challenges today and the impact of spina bifida is clear. But would I wish to change anything? Life continues to be beautiful.