Tori Looks Back

I’m Tori, I’m almost 28 and little did my parents know that I had Spinal Muscular Atrophy Type 2.

From a young age my parents taught me to notice the positive things in life and to find solutions to any problems I might face. They treated me just like any other child, I was rewarded for my achievements, and disciplined when I misbehaved. I can’t thank them enough for this, because as I grew, I forgot that I was disabled. I still forget today.

I could walk with calliper leg splints and a frame dragged behind me until I was 10 years old, and this was a daily exercise for me. My marathon of 23 meters along my primary school corridor is still a proud memory! I knew I’d need spinal surgery with metal rods to fuse my spine straight, and that time came when I was 13 years old and had just started secondary school. I’m happy to report that all went well, from a 62 degree scoliosis to a mere 12 degrees, gaining 6 inches in height and home in 17 days was a life changing event. I don’t regret a single moment of the frustration or discomfort and I doubt I’d be as strong as I am today if I had refused the surgery.

My teenage years were just as eventful as anyone else’s: boyfriends; break-ups; and late nights followed by long lie-ins. I studied hard, I learnt to drive my own drive-from wheelchair vehicle, and I got into Falmouth University studying Illustration. Three years later and my degree was well earned. I went on to have 2 children’s illustrated books published with singer/songwriter Lou Rhodes, with hopefully more to follow.

But for now, my boyfriend and I are looking to buy our own home after living in an adapted rented bungalow for 4 years. We’re so happy, living life as any able-bodied couple with the exception of a live-in carer to help me with all aspects of daily living – from cooking, cleaning and showering, my carers are my hands and help me achieve whatever I need to. I decided this was the correct type of care for my needs, where someone can be on hand to ensure my safety but promote my independence without mothering me. There certainly isn't three people in our relationship, and we insist that carers give David and I time together as any other couple.

Our latest, and biggest challenge to date was a 4,000 mile trip around Europe, driving my van with David and a carer through 15 countries in under a month, raising awareness for disabled travel. This epic trip (named ‘Our SMAll Adventure’!) had many ups and downs, but not once did we turn back. We took everything that I needed and managed extremely well considering we were so far from home. I documented the entire journey day by day as a free resource for other disabled travellers, to encourage others to follow in my wheel tracks. Visit the website here.

For now, we’re saving for another adventure on the horizon, with lots of planning anything is possible. So where are you off to next?