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.