Niki’s Blog 1
I don’t think I knew much about the spinal cord, paralysis or disability before I started a new relationship with my (now) husband. We met on a dating site and there were pictures and mentions of something about a wheelchair; I was more interested in his sparkling smile and his list of interests which included wine and rugby. Problem was that after a few days of exchanging texts, emails and phone calls, when we met for dinner later that week, I was already falling in love with him – and then I understood that there would be three elements in our relationship; me, him and the devastating C5/6 neck break.
And so I began a mammoth assault on the internet, trying to learn everything I possibly could about embarking on a relationship with a generally optimistic tetraplegic. It’s a funny thing the internet; most of the time it spews a torrent of information at us about any given subject. Oddly I didn’t find the ‘day to day challenges of living with a spinal cord injury’ to be well documented! Innocently as I trawled through articles on pressure sores and bowel management, I presumed those issues only applied to people who were completely paralysed, or relied on hospital care.
What the internet did tell me was more about the amazing work that our spinal cord does, and how we bend and adapt ourselves when it is damaged or broken. I read tales of stem cell research, genetic therapies, brilliant surgeons and pioneering studies trying to fix the damaged and the broken and eventually find a cure for paralysis. By our second date, I was something of an expert on the spinal cord and potential cures for paralysis; but I still didn’t know how this handsome man went for a wee or why his hands were a bit knobbly and twisted.
It was all new and scary. In those first few months as we fell hopelessly in love, I was not only learning about this gorgeous new man that had filled my life with sunshine, but also about skin breakdown, blocked catheters and my new found ability to change an inner tube at lightning speed. I also had new ‘stuff’ in my life; once upon a long ago, my handbag contained girlie things like lip gloss, a nail file and an emergency bag of Maltesers. Gone were the days of a dainty bag; welcome to the world of spanners, hand sanitiser and sterile gloves!
But as hard as I tried, the internet didn’t give me all the answers. I quizzed him about every tiny aspect of his life and his care and the 14 years since his diving accident. I absorbed information like a sponge and became more involved with his care; to me (and I realise this doesn’t suit everybody) it was more normal than having a carer with us 24/7. I did courses at Stoke Mandeville on a variety of topics and became annoyingly knowledgeable about the Bristol Stool Chart and the technique of performing an assisted cough…not your average dinner party topics!
I also learnt that paralysis doesn’t mean that life stops. I guess I kind of expected life would be quieter and slower as he had to manage his care needs, and I foolishly presumed that activities would be limited for the world of wheelchair users. Oh how wrong I was! During our fist summer together I think I spent more time outdoors having FUN than I had done in years, and was often collapsed in a heap at the end of yet another weekend away sailing, or playing wheelchair rugby, or delivering talks to inpatients about care management and funding. It was exhausting, but I loved every minute of it!
What I didn’t know in the early days, but soon came to learn, is that life is also hard as a partner – not just because he is a generally optimistic (but occasionally grumpy) tetraplegic, but because it isn’t always straightforward, or easy. Some days it is very, very, very difficult for a million different reasons. And I don’t want your pity or your compassion; I’m just an ordinary girl who fell in love with an ordinary boy. We face challenges; just like every other couple on the planet. Sometimes they break him and sometimes they break me. We’re human after all, and we are far from perfect.
The biggest lesson I learnt was that there is life after paralysis. There is a huge, beautiful world out there waiting to be explored and whilst it sometimes feels insurmountable, we have to make compromises to find what can be achieved through determination and a bucket load of research.
There are a lot of blogs online about living with spinal cord injury; a lot of them are written by the person. I started writing because I wanted first-hand information from someone in my position, and at the time, I couldn’t find it. I needed a view of the SCI world from the other side; the lover, the wife, the husband, the friend, the sibling, the child, the parent. Through this series of blogs I’m going to try and share with you some of the positivity, acceptance and reality that I have found in the world of spinal cord injury. I hope I can share some fun stories, and also answer some questions. If you are new to the world of SCI, it may give you some insights – who knows, you may even learn something, just like I did.