Dan’s blog for SCI Awareness Day
My name is Dan Eley, I am 37 year-old man and I’m currently quadriplegic and wheelchair-bound after a spinal cord injury on New Year’s Day 2010 left me paralysed from the shoulders down. Like most people living with a spinal cord injury my life was turned on its head in an instant; a split-second decision and a grave error of judgement was all it took to change my life forever.
In early 2009 I was travelling in Colombia after having spent two years working as a youth worker for charities in Central America. I’d fallen in love with Latin America when I decided to go backpacking around the Andes region of South America in 2005.
As my first lone backpacking experience I found the continent an intoxicating bombardment of the senses with its beautiful scenery and dramatic landscapes, colourful indigenous peoples and its fascinating history, not to mention the gregarious and fun loving people. I was instantly hooked and returned from that trip with a transformed world view and an appetite for life like never before.
I’d already made up my mind long before the plane touched down in the UK that someday, somehow I would return to this wonderful continent which had left an indelible stamp on my heart.
That dream was fulfilled when I returned to Guatemala in 2006 to work for a year as a volunteer followed by another stint in El Salvador in 2008. My travels took me down to South America and Colombia where I was offered a job working in a bilingual college as an English teacher in Cali, the country’s third-largest city. After enjoying the summer of 2009 in England with family and friends I flew out to Colombia in August to start a new chapter in my life, full of enthusiasm and excitement about the adventures that lie ahead.
Travelling in the Peruvian Andes
It wasn’t long before I felt at home in Colombia, as most visitors who spend time there do. It’s so easy to meet people and make friends and I embraced the lifestyle and culture in Cali which is famed as one of the world’s salsa capitals and for its vibrant nightlife. I was welcomed warmly into my new post and it wasn’t long before I started a course of salsa classes. Everything seemed well, I was in the prime of my life physically, leading an active, independent and comfortable expat lifestyle. All that changed during my Christmas holidays when a couple of friends and I decided to go to the Amazon jungle to embark on what promised to be an epic adventure.
It was December 31st when we touched down in the jungle town of Leticia deep in the Amazon where the Colombian border meets with Brazil and Peru. The first thing that hit me as I stepped out of the plane was the suffocating humidity and heat and before long we were all drenched in sweat. I’d been in hotter climates but I had never sweated like this. We quickly found and booked into a cheap hostel in town and got some rest.
On New Year’s Day itself, having been taken in by the carnival atmosphere on the streets we decided to go to a nearby lake with some newly acquainted locals. I was hesitant to enter the water at first but beckoned in by the others I spontaneously ran into the water much as you might do if you were running to dive into the waves from the beach. This was the moment when my life would change forever.
New year’s eve 2009 with friends in the Amazon
My next memory was waking up looking at a clear blue sky. A girl who I didn’t know was looking down at me with a very worried expression on her face, she told me the ambulance was on its way and my initial reaction was “why?”. I couldn’t feel any pain and clearly wasn’t concussed but then I looked down at my body and realised that I was lying down on the bank of the lake. “How did I get here??” I thought to myself and went to get up. Then I was confronted by the biggest shock of my life, I couldn’t move my body at all! I looked imploringly at my arms trying to move them first and then my legs but nothing, I couldn’t move a thing. I remembered taking the dive and realised straightaway that I must have hit my head on something and damaged my neck and fallen unconscious. Someone must have seen me lying face down in the water, rescued me, and carried me out of the water. I still don’t know who to this day.
The next three days could only be described as the most hellish of my life, I was taken to an ill-equipped clinic in this small town in the Amazon. I asked my friend Kevin to call my family and then my insurance company to get me airlifted to a ‘proper’ hospital. I was still relatively calm at this stage, I spoke to my mum with a phone held to my ear. Things only started to get tense when the insurance company refused to charter an air ambulance for me citing a series of ever more implausible excuses, one of which was, quite unbelievably: “not having any spare beds in any of our hospitals”.
My condition quickly degenerated as the paralysis spread through my body. By day two my intercostal muscles were affected and breathing became a real struggle. An oxygen mask was placed over my mouth and tubes inserted into my nostrils but I was unable to inhale the oxygen into my lungs. I suffered a respiratory arrest and caught pneumonia and with still no news regarding an air ambulance I started to think about my fate in ways I never had before. It suddenly became a very real possibility to me that my life could end in this remote town in the Amazon.
While all this was going on my family, friends and employer were working hurriedly in the background to ensure my survival and very soon my college agreed to pay for my transfer by air ambulance to a private hospital. By day three I was in intensive care in one of the best hospitals in Bogotá.
Upon arrival my neck, which had broken in two places, vertebrae C4 and C5, was fixed back onto my spinal column with three titanium rods and a tube was inserted into my throat to enable me to breathe. My mum and sister flew over from England to be by my bedside and in the days that followed I was resuscitated from four cardiac arrests before it was suggested to us by the medical staff that I should consider a no resuscitation order since in their opinion “I would never walk again, never use my hands and probably never have any quality-of-life”.
Just one week earlier I had been getting excited about the trip of a lifetime and now I was having to decide whether or not I should let myself die! I was in shock and exhausted, inside myself I felt like giving up and I just didn’t know what to do.
In critical condition in hospital in Bogotá
Thankfully I did pull through and slowly went from strength to strength. After seven weeks in intensive care in Colombia I was transferred by air ambulance to Stoke Mandeville Hospital in Buckinghamshire. Here I faced another lengthy period of bed rest due to a deep pressure ulcer which had developed at the base of my spine. In addition I was diagnosed with MRSA and a serious respiratory infection.
Coming back to England was a bittersweet feeling, on the one hand I was grateful to be back home in safe hands and with my family and of course grateful to the thousands of people who had donated to fly me back home. However I had grown accustomed to the compassion and care of the Colombian medical staff who treated me so well and who will always have a place in my heart.
Over the following months I received a course of treatment for my pressure ulcer that had become the bane of my rehabilitation, treatment that only a specialist spinal injury hospital can provide. I am forever grateful to Terry Holloway at Stoke Mandeville Hospital who worked so hard to fast track my admission to Stoke Mandeville. She has undoubtedly been one of my angels on this extraordinary journey. If it wasn’t for her timely intervention who knows where I would’ve ended up and what impact it would have had on my already fragile condition.
After six months on bed rest my pressure ulcer finally healed. I’d weaned myself off my tracheostomy and I was ready for my next big step, to sit up in a wheelchair for the first time. I moved out of intensive care and I entered into the rehab phase of my time at hospital. I tried standing up in a standing frame for the first time in seven months, a giddying experience which takes some time to get used to. In addition I tried hydrotherapy which continues to be one of the therapies I consider most beneficial for people living with SCI and something I still do today.
I also experimented with a treatment called functional electrical stimulation (FES) which consists of artificially stimulating paralysed muscles which can no longer be moved voluntarily. Again this is a therapy I rate very highly due to its effectiveness in preventing muscle atrophy and stimulating the cardiovascular system and it has become an integral part of my weekly physiotherapy routine.
Unfortunately my access to additional physiotherapy and exercise in hospital was hampered significantly by being a MRSA carrier and after three months in the rehab phase and one year in total hospital I moved into a continuing care home with an in-house gym in the town where my family lives and where I grew up.
Hydrotherapy, beneficial exercise for SCI
Having thought that the worst was now behind me I was about to face an unexpectedly painful stage of my recovery. Re-entering the world after one year hospital as a completely different physical entity is very tough and saddening to say the least. We all want the best for our friends and only a good friend does but I found it impossible to escape strong feelings of envy going out with my mates again. Seeing them with their families, with girlfriends and travelling in ways that I could only dream of at that time. I remember coming home from going out and crying my eyes out on several occasions.
Somehow when you’re in hospital lying down in bed you feel like any other patient in the ward but now I was becoming acutely aware of just how limited and different I was.
It was around this time in spring 2011 when I was approached by the charity Spinal Research with an offer to work for them as an ambassador. With so much time on my hands and not knowing what else I could do with my life I accepted and started doing awareness raising talks for them in schools and at even at a conference in London. It was a hugely uplifting experience, for the first time since my accident I felt like my life had some purpose again. I realised that I had a message which could make people think differently about their own problems, a message which could give them hope in times of suffering and inspire them to feel better about life.
At a Spinal Research event at King’s College Hospital
This discovery was the start of many great things to come for me and I am forever grateful to Spinal Research for this awakening, for digging me out of an abyss and for helping me to realise that despite my disability I can still be productive and useful, something so fundamental to feeling content and motivated in life.
In October 2011, nearly two years after leaving there in a stretcher, I returned to Colombia. I felt strongly compelled to make the trip for reasons that can probably only really be understood from the perspective of someone who’s been through such an experience. I wanted to say thank you to so many people involved in saving my life, to return to the places where I had such strong memories and the place where I was last in able-bodied person. I hoped that this would help me get some closure on any trauma still haunting me as a result of my harrowing experiences there.
Finally I knew it was crucial to get to know in the flesh the work of what would become our partner charity in our shared aim to empower disadvantaged youngsters from urban slums through job skills training and mentoring programs.
Having feared the trip could have been a deeply distressing one it was in fact a revelation to me. My personal re-encounters and poignant flashbacks were accompanied largely by feelings of joy and only once did I really feel moved to tears.
It’s only now looking back that I realise that travelling was probably the best thing I did for my emotional and spiritual rehabilitation. To realise that I could still visit most of the important places I want to go and that by thinking laterally and with sufficient manpower you can usually access places which would normally be considered wheelchair unfriendly. The old adage ‘where there’s a will there’s a way’ really rings true when travelling in a wheelchair and I would recommend to anyone living with a spinal-cord injury to travel to some far-off land, not without due precaution and preparation I should add.
I returned from that trip to Colombia feeling a completely different person, more passionate than ever to start my own charity to support youngsters living in poverty in South America. Since then I have travelled back to Colombia eight times and each time I go I learn new things about wheelchair travel, to the extent that preparing for each strip seems only a little more complicated than when I used to go backpacking as an able-bodied young man.
Feeling a new lease of life in January 2012 I embarked on an ambitious fundraising challenge for Spinal Research. To ‘cycle’ from my home town Guildford to Glasgow using something called an FES bike, for more details you can watch this video clip to the right:
Greeting again the surgeon who operated on my neck
In total it took me 21 weeks from January to May to complete the 550 mile challenge and this intensive period of exercise two years post injury yielded some unexpected and interesting discoveries about my condition.
There are plenty of myths surrounding spinal cord injury and of course it is difficult to generalise because each particular injury is distinct, as is each individual living with a spinal-cord injury. I understand the need to make such generalisations however I also now realise how damaging and defeating such messages can be. My experience of making regular exercise and physiotherapy part of my weekly routine over the last four years has shown me that it does pay off so long as you can manage your expectations. It was suggested to me by someone in a senior position in hospital that I “should not waste my life doing physiotherapy” and another one I’ve heard several times is that after two years post injury functional progress in body movement plateaus for people with both complete and incomplete injuries.
My personal experience is that this could not be further from the truth. The functional physical improvements I have made since I left hospital are considerable and many of them were achieved after two years post-accident. I won’t list them all here but the most significant have been: learning to feed myself again using a spoon, using my laptop mouse with my left hand, drinking by myself and even being able to hug people with my stronger left arm. None of these achievements would have been possible if I’d given up on exercise and physiotherapy and many of them came well beyond the so called two year plateau period.
Another strong argument for making regular exercise part of your lifestyle is that if an intervention does come along which will enable those living with paralysis become more mobile it is important that your body is in the best possible condition to take advantage of such an opportunity. I hope that people reading this with a spinal cord injury who are in chronic stage of their condition can draw heart and motivation from my experience.
My experience of learning to live with a spinal-cord injury is that it is such a life changing experience it forces you to dig deep in the search for some new and more profound meaning to life. For me it became a case of sink or swim and it has helped me realise many things for example the importance of the special people in my life and after have been helped by so many I’ve discovered the joy of giving back.
In 2012 I had the fortune of being chosen as one of the Olympic Torchbearers, the greatest moment of my life, and as a result of the possibility of being able to inspire others through adversity I’ve been able to start my own charity to support underprivileged youngsters in South America.
Carrying the Olympic torch, the greatest moment of my life!
It may sound to you reading this that my accident was somehow a positive event in my life and while I recognise that my life has improved in some ways as a result it’s something that I wouldn’t wish upon anybody. Being so dependent on others for such basic things as an adult just isn’t right, no matter how well you adjust the situation. There are so many things that will never really feel okay about being so physically limited and it goes well beyond the obvious of not being able to walk. Regaining full control of basic bodily functions like bowel and bladder function, something we all take for granted and travelling in a way that isn’t cumbersome, expensive and complicated are some of the things I miss most.
Current research into spinal cord injury seems to have taken two parallel paths: one being the electro-mechanical exemplified by the recent introduction of external exoskeleton suits, and the other being the biological route via gene therapy and stem cells. Both approaches are producing encouraging results and I was fortunate enough recently try out the first exoskeleton for high level quadriplegics. The REX suit is an amazing product developed by a company called company Rex Bionics. I can’t tell you how euphoric it felt to take my first steps in over five years! I am assured the future versions will be more streamlined and agile.
The future looks bright for people living with spinal cord injury and it does feel like we’re on the cusp of something ground-breaking that could significantly improve our lives. Recent advances in medical science have shown us that a cure for paralysis is no longer just a pipedream and there is more reason than ever to believe that we will get there.
But we need your help to make that happen!
By channelling funds into pioneering research all around the globe Spinal Research leads the way in our pursuit to find a desperately needed cure for paralysis. Please support this great charity and help us put an end to the devastating impact spinal cord injury has on people’s lives. Thank you!