My name is Tori and I was diagnosed with spinal muscular atrophy type 2 (SMAll) at 18 months old. I’m also fiercely independent and living my life exactly as I choose to. Having a neuromuscular condition doesn’t control my life; I’ve just found different ways of climbing over those hurdles. I’m a children’s book illustrator with my second book being published in June 2014.
Independence has always been a key factor in my journey into adulthood, and so I decided to move away from home in Devon to study at University College Falmouth in Cornwall. Being a young disabled student moving away to live independently was a very daunting experience. But with the help from my personal assistants, who provide my personal care and ensure my safety, I was able to start my journey towards an independent life, but remain safe in my surroundings.
My life is amazing. I have such great support from my parents, both being my heroes and my best friends. I live in my fully adapted bungalow with my boyfriend, our animals and I have my personal assistant (PA) on hand when I need help with anything. At the age of 26 I already feel that I have achieved so much with my limited mobility.
My Spinal Muscular Atrophy adventure: an European challenge
But it certainly doesn’t end there. I’ve always been extremely determined and ambitious and I feel I’m ready for my next challenge. So in May 2014 I am taking the chance of a lifetime and driving a 4,000 mile round trip around Europe with my adapted vehicle and electric wheelchair, visiting 15 countries in three and a half weeks. This is a feat for anyone, but being disabled brings extra challenges.
My boyfriend and I are at the point in life where we want to explore and take holidays, but city breaks are proving to be far more difficult than we anticipated. With the upheaval of transferring from a wheelchair to plane, potential wheelchair damage, and rushing around for over just two days in a European city, we’re returning home as stressed as we went.
Adding to this, having to pay for an extra flight for my PA, expensive insurance, and of course a hotel room for my carer doesn’t come cheap either. Oh and that’s not including the cost of hiring a mobile hoist and pressure relieving mattress from a local company. It’s just so much to think about for two days abroad!
So we thought: let’s do it all in one go! We can take all of my equipment in our own form of transport, and we’ll know that it’ll work effectively and be safe – one stress removed. I’d like to see the world before it becomes too difficult for me to do so, and I believe this is the best way to do it. Yeah, some days I get achy and I suffer with severe Osteoporosis too, so I want to push myself now whilst I’m still young and can take a bit of the rough side of travelling! Likewise, whilst my boyfriend is still able to pick me up and throw me if he needs too!
Inspiration and practical advice
Over the past few years I’ve been working voluntarily to give support to peers, teens and families with conditions similar to my own, and have been a little unnerved by the cautiousness of many people I’ve met. So part of the aim of this trip is to bring inspiration and enthusiasm to the talks and mentoring I give. It’s such a wonderful feeling encouraging people to take steps towards their dreams of university, driving a car and living independently.
So during this trip I will be keeping people posted on every aspect of the journey, from the preliminary stages of booking and organising disabled accommodation, to what the accessibility of the tourist attraction is like. I will be blogging, reporting and critiquing every single aspect so that other disabled people can use the information as a resource for planning their own trip away.
Having a physical disability and using a number of mobility aids such as electric wheelchairs and mobile hoists can often put a strain on holidays abroad. But this entire trip will act to demonstrate how easy it can be with forward planning and the ambition to achieve. This combination is all you need to live an independent lifestyle, whether you’re able bodied or have any form of ailment.
You can follow the rest of our planning by visiting my Facebook page and blog listed below, and during our journey we’ll have a tracking device with us so you can even follow us on our trip of a lifetime.
During the trip we’re raising money alongside this for the Jennifer Trust for Spinal Muscular Atrophy, which gives a great deal of support to young children and their families who have been diagnosed with the condition. If you can, please do donate by visiting www.justgiving.com/ourSMAlladventure.
We’d love to hear your travel tips, words of advice and wisdom, so please get in touch!
By Tori Elliott