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.

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