Quote from Catherine
My new wheelchair has given me a whole new lease on life
“I feel simultaneously safer and liberated – two things you rarely feel at the same time when you have Brittle Bones! I am now able to travel around my local area and go places I have avoided for years. My pain levels and the terrain no longer dictate how far I can go, or where we go. Wheeling somewhere no longer means I am exhausted by the time I arrive. My quality of life has improved – my mood, my self-esteem, and my confidence levels are all higher. I feel more able to explore the world and travel and go on adventures again – it feels like my life has grown larger and my horizons have expanded. I am so grateful for this opportunity, and for the help and support from the BBS and Motability. There is no way I could have afforded this chair on my own without help, and no way that a chair provided by the NHS would have met my needs, let alone have had the amazing impact my new chair has had. I am really looking forward to rediscovering my my independence, and reclaiming my freedom”.
The Feeling of a new chair
It is honestly hard to explain how much gratitude I feel for my new wheelchair, or how much I want other wheelchair users to feel this way too. Trying to explain how a new wheelchair makes you feel is like trying to explain what it feels like to fall in love, so please excuse me if I get a little poetic. This wheelchair makes me feel free. This wheelchair makes me feel empowered to go further, do more, go on adventures, explore side streets and new paths, and for the first time in longer than I care to admit, it feels like my life is getting bigger and not smaller, as though my horizons are expanding.
“Empowerment” is definitely the word that has resonated with me the most. Last weekend I took my dog for a walk with my wife, and where we went was not determined by my pain levels or where there were paved paths. I felt able to take on new challenges, to “try it and see” in a way I never could in my old chair – I did not feel like I could “trust” it on difficult terrain. For example, during our walk, we covered three sides of a rectangle, and then reached a place where the path “gave out” and turned into gravel, mud and grass. In my old wheelchair, this would have meant that I would have had to turn back, and go back the long way around. In my new chair, I cruised through the obstacles. We visited a park that I haven’t been to in a decade, because it’s down a large hill that I couldn’t face having to go up again at the end of a walk. Yesterday I raced my wife up that hill (and won).
My new chair itself is empowered, in that it has a SmartDrive MX2 power drive on the back. This allows me to get an extra “push” from behind, that I am in control of. When you cannot manage something under your own steam, someone helping you by pushing your wheelchair can be incredibly helpful and lovely and heart-warming – such as the time a whole Rugby team got me up a train station’s ramp. It can also be incredibly terrifying – such as the time that a French railway porter accidentally dumped me out of my chair in the middle of a train track. As someone with Osteogenesis Imperfecta (OI, Brittle Bones) I cannot tell you how lovely it is to be able to have all of the benefits of someone pushing with none of the drawbacks – I feel in control of the extra power, I feel much safer, I don’t have any insecurity or guilt issues about someone else pushing me, and of course the battery pack never runs out of breath! When I talk about my chair in specific situations, I’m going to refer to this as “Empowered mode”.
The Difference it makes
My old wheelchair is a good wheelchair, and its only fault is that I got it while I lived in a far more accessible place. Where I live now, the pavements are very slanted and uneven, which makes wheeling along them very difficult – one invariably ends up only using one arm, which gets very tired very quickly. You can soften this slightly by crossing the road, but you cannot “coast” or rest, or you will end up in the road. My old chair also used to creak a lot at some of the steep angles, and I distinctly remember a moment when my wife stepped on and snapped a twig while walking next to me, and I spun around in terror wondering what on my wheelchair had broken. It’s hard to really notice how little you trust your wheelchair to do things until you can compare it to a chair you do trust.
I did a few tests with my new chair and old chair along the same surfaces. My new chair is amazing on the uneven pavements – the ride is smooth, there is no creaking, I don’t have to grip the pushrims as hard (which will help me avoid hand/wrist problems). I also noticed that I sit up straighter and more comfortably, and I don’t use my shoulders or good leg to counterbalance when going over uneven surfaces – I feel much more firmly “planted” in my new chair. In empowered mode, my new chair makes short work of uneven pavements – I can basically use one hand to “brake” and rest the other hand. This changes everything, especially how far I can travel before getting tired, but also where I can travel to.
My new chair has quite literally expanded my horizons
Life isn’t just lived on pavements, though. As I mentioned before, one of the best things about my new chair was going to the park, even though it was wet and muddy and down a very steep hill path covered in leaves – all things that would have made it a “no go” in my old chair. I tested both chairs on a patch of mud. It was not a scientific test – the old chair went first, when I had most energy, and was carrying less weight in terms of the attachment and backpack. That being said, getting over the patch of mud in my old chair was difficult and scary – an unexpected dip tipped my chair backwards and I had to use my leg to counterbalance myself. My new chair took the same patch of mud in its stride, and in empowered mode the mud patch barely slowed me down. Something that was a hazard became less than an obstacle in my new chair.
Mud, grass and gravel are really hard to get across in a wheelchair, especially when you’re changing from one of those surfaces to the next close together. In my old chair, I basically had to partially backwheel balance to keep my front wheels from sinking in, and then “jump” myself forward. In my new chair, it was a much smoother ride, especially because the titanium minimises the vibrations (which also helped prevent my feet from feeling numb from vibrations on rough terrain or at higher speeds). In empowered mode, my new chair is able to deal with difficult terrain with ease, and I can go over grass, gravel and mud without any difficulty. This has opened up so many more places and spaces to me.
Hills are such a difficult barrier when you are a wheelchair user. Going downhill is wonderful, but coming back up is the problem. The pavement on the hill down to the park is covered in leaves this time of year – making it pretty scary to go down as well as up, because wheels can spin and move on wet leaves even when you’re breaking (much like water-planing in a car). I admit I didn’t even try to get up that hill in my old chair, but the method would have been to turn around and try it backwards, very slowly – which does not feel safe because you can’t see where you’re going, and is also absolutely exhausting. I decided to try the uphill leaf-covered path in my new chair, but honestly I assumed it wouldn’t work and I would have to cross to the other side of the road or get into the road. I should have had more faith. My new chair, in empowered mode, can get me up the hill despite the leaves on the pavement. Honestly, the feeling of freedom and empowerment is amazing. I can go wherever I want, and the journey there won’t affect my pain or energy levels when I reach my destination, and difficult terrain or bad pavements won’t stop me from going where I want to go.
Travelling is hard as a wheelchair user – in my old chair, if I went away for more than three days, putting my travel bag on the back of my wheelchair would cause it to tip over backwards as soon as I stood up. This made everything from buying a train ticket to going to the toilet feel dangerous, unpredictable and uncomfortable. Other people’s reactions didn’t help, and more than one someone trying to “save my chair from falling over backwards” pushed it into the back of my calves. The luggage holders on my new chair allow me to carry all sorts of things on the front of my wheelchair, and balance those things with the weight on the back, and this changes so much about what I can carry, as well as how easily I can offload something I’m carrying. I was also helped to me make several ergonomic choices such as the ergo seat, the tension adjustable breathable seat upholstery and the tension adjustable backrest. All of these combine to ensure I feel more snugly encapsulated by my chair – I feel safe and supported, and my posture has improved. The locking back rest will also help me move my chair more easily.
There is no way that I would have been able to afford it by myself, and without my new chair, I never would have known how much freedom I was missing out on. I never would have realised how limited my “radius” was, and how small I had allowed my life to become. Getting my new wheelchair has been excellent for my self-esteem, my confidence, my mood and my dog is incredibly happy with the new mud-filled adventures. I have been able to reclaim my joy and sense of adventure, because the Brittle Bone Society (through the Motability Foundation) funded my wheelchair. Thank you so much.