In 1998, as a consequence of the rapid onset of a chronic neurological illness, I became a full-time, non-standing, wheelchair user.
At the time, I – with my partner, D – was living in a fairly typical for London, Victorian end-of-terrace house – that’s the front fascia of it in the images above and below – which we’d bought early in 1996.
We’d fallen in love with the house and its’ quaint and quirky features, tall, thin three-storey elegance and cosy, rabbit-warren-like layout: a house that was not, on the face of it, at all wheelchair friendly. It’s one wheelchair-saving grace: a level front entrance.
From 1998 to 2001, we continued living in our home but made no permanent adaptations, on the advice of my consultant who had hoped to get me walking again. These years were a period of intense and frightening ill-health – documented in my Health Archive.
Our struggles with my ill-health were compounded by the sheer physical hell of moving and handling my painful, paralysed body in a largely unadapted house, laid out over three floors.
We did make a number of adaptations to assist us in the short term but nothing of a permanent nature – not only due to my consultant’s advice but also the speed of deterioration I suffered, making it impossible to know what to do for the best.
On my first Stiletto Wheels blog – under the Lifestyle section – I wrote about how – poorly – we managed, discussing a number of the adaptations and assistive devices I used/bought.
In 2001, my consultant gave me the news we’d dreaded: there was no more they could do other than treat my relapses and hope for remission. I was unlikely to recover and my illness would, most likely, be progressive.
By then, we’d discussed our options, in theory, and now we had to make the major decision: stay and deal with our adaptive needs better in our home or move elsewhere, maybe to lateral living, and adapt there.
Having had the time to think about it, we knew we didn’t want to move so, we adapted, with the help of an architect and a fantastic builder – the brother of one of my closest friends whose partner has MS.
And, life got easier.
In 2001/2, and over the following few years, our house project, with adaptation and assistive devices, was completed. We made the changes that we needed to, and more as need arose, with successes and failures along the way – which I’ll blog more about soon because these experiences are relevant to our current plans.
Yes, you read that right. The Victorian house love has persisted, we are still in situ, planning to start and finish (in 2018) our second major home renovation and refurbishment since 2001/2. House Project 2018 includes revisiting all of our home adaptations and assistive devices hence, a new – Access My Home – section on this blog.
I will admit, as part of our planning process, me and D did revisit the lateral living idea as most wheelchair users are encouraged to do, it seems … and with good reason.
We’re not oblivious to the ageing process and the amount of maintenance and upkeep an old house requires, we wanted to keep an open mind, see if we would better improve our situation, now and in the future, by moving. We did go and look at flats, mostly new build, as older buildings tend to have similar adaptive issues to those we’ve already faced in our existing home.
Eventually, it became clear that, if we moved, we would have to spend huge sums of money (that we’ve already spent where we are) on adapting any flat that we bought. We also didn’t see anywhere, across a 2-3 year time period, as we stopped and started our planning again, that we love as much as where we are.
Sure, an almost-penthouse type flat with a great view and open plan ‘front’ living space is fabulous but not if we are sacrificing more big bed and bathrooms, high ceilings, beautiful external windows and storage spaces. Also, the new-build ‘back’ spaces – kitchen, bedroom bathrooms and storage – were, so often, small, dark, cramped, low-ceilinged and even windowless.
In my home, illness-induced wheelchair use comes with spending a lot of time in bed, huge amounts of equipment and medical supplies and a need for spacious living everywhere not just the usual daytime zones. I need views, space, light and beauty as much as I need air to breathe and, here, where we are, I have most of those things.
So, early in 2017, as I recovered from some horrendous health issues through 2015-16, we decided to stay, adapt more, live better … can’t really say about longer but then, who can?
Today, early in 2018, we have plans, planning permission, finance in place … well, almost for the finance as we are waiting on final costings from prospective builder and suppliers.
Whilst we wait on those and a start date, I’ll be blogging about how we’ve got this far and what we’re planning to do, focussing on the integration of adaptation and assistive devices with, you know, living life like everyone else.
Later, I’ll be writing, maybe video blogging on the changes we make as they happen.
Do note that I will not be giving advice because I know that those of us with assistive need must work out what is best for each of us. However, I am happy to say: this is how I do it in a ‘totally unsuitable’ house.
Learn, laugh, discard: I hope my design-disability-decor adventures help you in your process in any way that they can.
Please feel free to pass along any tips of your own to me.