Spinal Cord Injury – My Story – Sandy Shaw
It is often said that your life can change in a nanosecond. How true that is. My 29 year old son Tom suffered a spinal cord injury in July 2011, just 31/2 years ago. It is still very new. Our lives have changed irrevocably as a result. I am privileged that Jo has asked me to talk to you all about Tom this evening and our involvement with Back Up. This amazing charity has, quite literally saved me and continues to do so!
Life before Tom’s accident
Tom worked in international development in Guinea Bissau, Mozambique and Afghanistan, his expertise being in food security and livelihoods in developing countries.
In 2010 Tom joined the International Rescue Committee (IRC) (David Miliband now president of) in the Democratic Republic of the Congo. After this posting, he and Julie, his long-time partner of 16 years were planning to settle down.
The Accident
In the summer of 2011, my 3 children: Jess, Tom and Jethro decided to holiday together in Zanzibar – They are great mates but didn’t get to see each other much being based in Cape Town, DRC and London respectively. I decided not to join them. I was going to ‘sort’ my house!
Early on the day Jethro was supposed to fly, Jess called – Tom had had an accident the previous night. He was at a training course in a remote part of Ghana, and heading to bed early when his colleagues badgered him to get into the pool. Finally, to please them, he stepped forward to jump, fully clothed when one of them pushed him into a dive. It was the shallow end. He had broken his neck and couldn’t move anything below the shoulders.
His colleagues got him out and lay him by the side of the pool. It took many hours to be transported to the main hospital in Accra on a terrible road (100mile journey).
We knew nothing of spinal cord injury. After some hours it became clear how serious this was. Doctors in Ghana wanted to operate on his neck; they deemed him unstable to travel. Tom declined and asked to come home, so IRC flew him to the UK to be admitted to the National Spinal Injuries Centre at Stoke Mandeville Hospital in Aylesbury. This 48 hours was the beginning of a journey of seemingly little victories: he was alive, he could talk, he was coming home. I remember running from the car park with Tom’s dad to be there when he came in. He was trussed up tightly and typically smiling. ‘Hi Mum, your hair looks nice’ We were so happy to see him but Jethro ran out of the hospital, distraught. We had no idea what lay ahead. Jess flew in from Cape Town.
Tom was, in fact, very poorly. Apart from a broken neck, he had developed pneumonia and a huge, necrotising pressure sore on his back from lying in wet clothes for so long.
Even then, we were in denial, ignorant of what spinal cord injury meant. The consultant explained that his neck was broken at C4/5 and was very inflamed. He would not operate until the inflammation subsided. What we wanted him to do was assure us that once he operated and in time, Tom would recover and walk again. He could not say either way (there was hope!) but that the longer he was unable to move anything, the chances decreased.
It is astonishing how the human mind can be so determined and hopeful in the face of obvious catastrophe. Hell had begun in earnest now. Tom was put in traction: his head bolted to a 10lb weight stretching out his poor neck, able only to move his face, staring at the ceiling… for 4 long months. The pressure sore was horrendous and needed extensive skin grafting. 2 major 6 hour ops followed on his back and then neck.
All our lives were on hold. Jethro was in his final year of a Maths degree, Jess and Julie in crucial end stages of completing PhDs, I was off work from my job as Deputy Headteacher for a whole term and then just worked very part time.
Stoke Mandeville ran a Relatives Day where I was introduced to Back Up services. I remember thinking how supportive they sounded. It would be some time before I realised how much I would need them.
After almost a year in SM, Tom was to be discharged but to where? My house was unsuitable, having 13 front steps. Care workers tried to move him to a care home in Luton. We were assured there were young people there. Julie and I went to visit. It was wholly inappropriate. He would have been with elderly people with dementia and others with learning difficulties. We were adamant NO WAY. You will be horrified to hear that over 20% of people with SCI are transferred into care homes. Many are there for years. It is heart breaking.
We were rescued by another amazing charity Aspire (currently teaming up with Back Up) who arranged for Tom to move into an adapted property in London.
Again, another small victory, leaving hospital, moving towards normality? With constant pressure and pleading, Tom was housed in his current flat near to me and Julie in Luton.
Spinal Cord Injury
It was then, out in the world, that I realised we had in fact, landed on a new planet called SCI. When your spinal cord is damaged, it interrupts the flow of messages between the brain, skin, muscles and organs of the body. The extent of this depends on where the spinal cord has been damaged. Tragically for Tom, he has a high level injury at C4 (cervical vertebrae) which means he has no movement below the shoulders, apart from the biceps which has, with intense, private physio, enabled him to feed himself.
We had no map, we did not speak the language, we did not understand its norms, boundaries or which way to turn and we didn’t know any of its inhabitants outside of the hospital. It would, we thought, be so great to have the privacy of a home! But introduction to our new planet was not kind:
- Tom has to have 24 hour live in care, He and Julie are never really alone. They will always have to share their home.
- Tom uses an electric wheelchair, and every journey, involving public transport, access to all buildings has to be meticulously planned. There is no such thing as spontaneity
- People do not talk to Tom; they talk to whoever is with him, at their level. Small children smile at him a lot, quizzically. He is at their level.
- Health issues are many and complex. He is unwell a lot, suffering from constant UTI, spasm and pain which, yes, he can feel.
- You will notice that Tom is smiling in every photo. He would hate anyone to feel uncomfortable.
- He has spent 2 years working at privately funded physio to improve his strength. These have been bright spots, especially having the opportunity to ‘walk’ in the computerised exo suit.
Back Up
I am sure that many of you will understand that, as a mother, you feel the need to be insanely positive, encouraging, entertaining and empowering. Reality hit me some time in the second year. Thankfully I remembered that Back Up ran a mentoring service. I thought about calling, prevaricated weekly – but what to say? What could they do for me?
As time went on,I found myself in poor shape. I plucked up courage and called. I remember being out shopping having pulled into an unfamiliar street. I hadn’t realised how far I was sinking until after an hour at least of sobbing and listening to the kind, warm, real beautiful voice on the end of the phone. She understood! It was a defining moment for me when, despite enormous support, love and help from family and friends, I suddenly didn’t feel totally on my own. I had finally met someone who knew about my alien planet and knew people that lived there! I will never forget that moment in St Albans.
Back Up put me in touch with parents of children similarly injured. They were able to gently teach me that Tom’s sensation may not mean that movement will necessarily return. They helped me to begin to come to terms with what had happened to my beautiful boy and to our family. They had had similar practical and emotional experiences. They still help me and I learn so much from them!
Someone’s life is changed irrevocably every 8 hours through SCI – a terrifying statistic. 20% suffer clinical depression and the suicide rate is x5 the national average.
Back Up do exactly what their name says. They support those who are injured and their families through:
- Mentoring –matching people they feel will best support each other.Tom continues to benefit from this incredible service.
- Running wheelchair training courses
- Running amazing Activity courses – Tom has just returned from a ski karting course in Sweden. Not only did they provide a personal assistant, coach and nurse for each of the 5 participants, but they helped with equipment and everything was meticulously organised. They run many such activities for those with spinal cord injury who would never access such amazing opportunities otherwise.
- Helping people return to work.
I have just returned from 5 months working for a charity called VSO in Papua New Guinea, training student teachers and their lecturers. It was wonderful. I can honestly say that, without Back Up, I would not have had the courage to leave Tom and pursue my own dream!
I am still teaching part time but honestly….. counting the weeks until I can train as a mentor for Back Up and start to give back, to other mothers/parents of children who have suffered spinal cord injury, some of the incredible support Back Up continues to give me.
Tom is slowly taking on some proofreading, voluntary work for his colleagues in Afghanistan, with the help of a voice activated word processing programme. It is hard work! He and Julie are engaged to be married and are in the process of buying a house in Oxford, where she is now teaching full time.
May I say a huge thank you to you all for participating in this fundraising event today and I hope that my story will go some way to raise the profile and provide valuable funding for Back Up’s incredibly important work to continue.