Keep on rolling

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Most people celebrate their 25th wedding anniversary by having a big family party or going on a cruise. In 2007 we celebrated ours by buying my first wheelchair. OK, so we did have a small family get together too and we went away to a hotel. Oh yes and we got our first Motability car, not sure where that comes on the scale of treats. Perhaps it’s just an essential.

Back to wheelchairs, Mary had been trying to talk me into getting a wheelchair for some time. She knew it would really help me and enable me to get out and about as I was able to walk less and less. I was too focussed on what people would think of me in a wheelchair, how I would look. I hated the idea that people would stare at me. By 2007 I could about manage to walk 25-50 yards on a good day before I was in extreme discomfort and really exhausted. Which meant I didn’t really get to leave the house much. Mary came up with a great idea that eventually convinced me to try a wheelchair. She said think of it as, “go further wheels”. I decided to try the idea and when we were given money for our anniversary, I bought a cheap, attendant fold up, push wheelchair from Amazon. It was made of steel, so it was heavy, and it only had hand brakes that operated on the tyres. No brakes to slow it while Mary pushed it.

This is the only photo I can find of that first wheelchair

This first wheelchair lasted about two weeks before we had to send it back as unsuitable. It was just too heavy for Mary to push. When I was in it Mary couldn’t even see over me. Mary is petite. Also, when pushing me down a slope it ran away due to its lack of brakes.

One day I was seeing the GP for a regular visit and explaining all this when she referred me to the NHS wheelchair centre. Within a very short time I had my first NHS push wheelchair. Because of Mary’s stature, it was custom built. They made it of aluminium, so it was very lightweight and also low slung, and it had drum brakes.

My 1st NHS wheelchair

Let me describe the absolute joy of our first trips out in that wheelchair. First, we had the Motability car that had space for the wheelchair in the back and straps to hold it. We were living in Hartlepool at the time, so we went to the seaside most days. On a typical trip we would arrive in brilliant sunshine and then get out into the biting North Easterly wind. HartlepooI had that way of fooling you with its sunshine. I had a good selection of warm leggings and coats, hats and gloves. So wrapped up like a mountaineer, Mary would push me along the road towards the promenade. Hartlepool has miles of promenade, well-kept and wide. If it was down South it would be a very well used seaside resort, as it is in the colder North East, the promenade is not really busy, even in summer. The one problem with the sea front were the slopes down, or rather back up from the lower promenades. That’s when the amazing friendliness of people so often shone through. They would either help Mary push me up or push me up for her.

Most days the seas were dramatic and invigorating, Hartlepool is a beautiful place as is the whole North East coast. I so enjoyed our trips along the coast. I used to make up stories about the people we saw coming the other way. These trips out were the highlight of both our days. At some point I will post those stories in a fiction section on my site. Mary and I miss that first wheelchair, it was light, easy to use, and we were physically close to each other in it. In my later power wheelchairs, we are further apart.

Hartlepool seafront

You may have seen Little Britain, there is a character in it who uses a wheelchair. Whenever no one is looking he runs around and demonstrates that he has no problems walking. I think there is a widespread belief in many people that some wheelchair users are like that. Comedies reinforce that idea and I think I know where the idea originates. With illness, if they affect our legs at all, we often lose the use of our legs gradually, whereas accidents tend to be acute and leave people suddenly unable to walk. This is true of many neurological conditions, MS, Muscular Dystrophy, etc in fact some conditions have an up and down element to them. Good days and bad days. So, the fact someone is in a wheelchair doesn’t necessarily mean they can’t walk at all, perhaps they can only walk a few steps, perhaps they can stand. Maybe some days they can walk further than others. Unless you have experienced this, you may find it hard to grasp.

My legs first started to play up in the early 1990’s, sometimes working and sometimes not. In 2012 I was limited to a hospital type bed and a wheelchair full time. There have been many ups and downs over the years. Between May 3rd 2015 and Jan 18th 2018 there was a medically unexplainable miracle. I will post about that separately as it is a big subject.

My second NHS wheelchair was a push high backed reclining wheelchair. I was never really able to use it because it was too heavy for Mary to push and too heavy for her to operate the recline and tilt. After a few weeks they gave us a power pack, but it ground on our step and we had to ask friends from Church to get me outside. For a whole year I was unable to get out of the house except with help. Then finally the NHS gave me a powered wheelchair. It was powered in movement and recline and tilt. I also got a grant to add power to the leg lifters.

Stuck in doorway, NHS non power wheelchair in doorway at Creech
First NHS power wheelchair outside our old house at Creech

My current wheelchair, which I got in August 2018 is the best NHS wheelchair I have ever had. Everything was powered right from when I was given it. It has 6 wheels with a central pair of drive wheels, so it rotates easily in confined spaces. The suspension is brilliant, it articulates, so it copes with uneven ground well. That may sound like a gimmick but imagine going down an uneven road and you are in a wheelchair that doesn’t give at all. The whole thing just lurches left and right, you feel like it will tip over. With articulation the uneven ground is smoothed out so that you are not thrown around as much. There is a limit to how much unevenness it will smooth out and you still must be careful in a wheelchair not to take it on extreme bumps.

My current wheelchair at Wellington park
My new chair on a train

What’s it like to be in a wheelchair? You discover that roads are much bumpier than you realised before. You also notice all those little steps, 1- or 2-inch steps than seem non existent when you were walking but feel like ski jumps when you are in a wheelchair. As for a 2- or 3-inch step, a wheelchair positively leaps in the air and comes crashing down over some of those. In the case of my current power wheelchair it has about a 2-inch clearance under the battery shroud, so it also grounds. Most roads have lowered pavements these days, but not all lowered pavements are equal, some are quite a bump, and some have a drainage channel running in front. Then you get those people who think lowered pavements are an OK place to park. Leaving us to travel a long way looking for the next one.

Mary must operate my wheelchair when we are out on the public streets due to the collapses counting as fits or seizures. She is excellent at driving it. There is a rear control on my chair, but Mary can’t see over the chair when using it, so she uses the front control. That makes us wide. Pavements in Wellington are not as wide as us, especially where shops put out signs, chairs, bins etc. Then there are those funny moments when people are walking towards us. They see us two abreast, my hands on my lap and I am mainly looking around, not ahead. Yet they still seem to assume I am operating the wheelchair and walk straight at Mary expecting her to step left and let them pass between my chair and her. Which, of course, she is forced to do. We are then repeatedly enforced to stop because of this.

Slopes are really fun. The front two wheels of my six wheel chair often come up into the air when I first go up a sharp slope. It puts Mary’s heart in her mouth and makes me very glad if I am wearing brown trousers. Slopes generally can be terrifying. The best trust game I know is when I or someone else operate my wheelchair backwards down a ramp on the accessible transport. I am being told I am lined up and going very slowly. But I must trust the people telling me or operating it. I always prefer it if Mary is there to confirm instructions or if she is operating it, I totally trust her. One or two inches either way and I would be off the ramp and crashed in a heap.

The other fun thing about a power wheelchair is that it stops when you take your hand off the controller. Well, it stops in about a foot or so at top speed. Very exciting if you are heading towards a road at the time. Controlling a power wheelchair generally is an experience that really should be for the youth of today as they are joystick controlled. Our son’s and daughter operate it like experts. Mary and I took a while to learn. I don’t know how older people manage. The joystick is so sensitive and frisky that we had ours adjusted to be less sensitive, but it still involves a lot of skill to get it round our house. Anyone would think the Victorians hadn’t thought people would use a power wheelchair in the house in the future, short sighted eh? As for British roads in the average town, they are just not wheelchair friendly at all.

Wheelchairs are life changing, essential bits of equipment. Embarrassing to get used to being in. Tricky to use in many settings, but I could not do without it. It enables me to get out of my house into the world.

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Watching music at the park last summer, thanks to having a wheelchair

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