Unfortunately, the singer himself fell under the brutal wheels of the MS bus. He is no longer with us.
I can see people thinking the same question at me. I’ve written long and hard about the effects of my condition. My wheelchair adventures are well documented.
But, what is it like?
Let’s start with frustrating:
I now operate from a lower level. I call it the bottom line. In a crowd, I am in amongst everybody else’s bottom. I’d rather look somebody in the eye rather than up at their eyes. I’d rather be able to reach the high shelves in the supermarket and not ask for help.
Independence, once taken for granted is becoming more difficult. It adds new burdens but I have the drive to continue. You won’t find me wailing. I may be honest about my frailties and fears but moan I will not!
One of my major frustrations lies in the attitudes of others. Even after comprehensive explanations, there may still be a look of disbelief. I can detect resentment at my benefits or the fact that I don’t work.
I have a man cave all bought and paid for and live in a peaceful environment. But I know the grind of daily work. The early winter mornings, long car journeys and stressed out environments have been my friends. The sense of the ceaseless treadmill has invaded my soul for years. So, why do people still come to me with faces of despair?
The work, the pressure and the lack of freedom? I’ve known it all but if you have noticed, I don’t have the capability to do it anymore. But I have done it.
My time is spent looking after myself; a true full-time job. Whenever I start to explain my own personal tribulations, I’m referred to as self-centred; a bit “woe is me.” I’m not believed by some. These “some” have been an important part of my past life who should know me better. That’s frustrating.
Fortunately, I have lovely friends and relatives who do understand. Their questions are questions of concern.
Yes, life in wheels is bumpy. Oh, listen to the motorist lament the pothole peppered roads brought on by years of neglect and temporary repair. Have they seen the pavements?
If you are in a wheelchair going up to Lime Street Station alongside the side of St George’s Hall you’ll understand.
The few bits of pavement in my home town are often impassible due to inconsiderate parking and the joke of dropped kerbs. The local green looks like a lavish spread of carpet-like lawn. It’s not. It’s like skiing down moguls. I’m glad I don’t have man-boobs.
For years, I skipped in and out of my parents’ home. I’m sure the step grew bigger. I’m sure all steps have grown bigger. They are such a barrier.
One side of my local high street is out of bounds. Steps all over the place. Mind you, I don’t think the nail salon or the glowing fluorescent colours of the elderly ladies nylon fashion shop are quite my scene. As for the travel agent and flower shop……
This is where planning comes in. Every trip outside needs meticulous preparation. I’m fairly safe with supermarkets, train stations and big chain pubs. Smaller establishments need checking. It’s inconvenient.
I was so pleased to find an ethnic food shop in Bold Street, Liverpool. I was even more pleased when the smiling shop assistant turned up with a threshold ramp.
I have a leaflet already made up to post through the doors of the shops on the left. I use a ramp at home. It was seventy quid. Not much for the job it does.
Cooking in the kitchen. It’s slightly too narrow to turn in the wheelchair so I’m constantly reversing out to reverse in, depending on which side I need. I’m used to it but it takes forever.
Going to bed, getting up, showering, dressing and sorting out the bedroom wreckage is a long process. Going outside, I need to get the door open, wedge it and place my threshold ramp in place. The ramp is big and cumbersome. It takes a nifty trick with feet before I can drop it into place, thus disturbing the whole block with its loud resonating aluminiumesque echo. Then it’s a question of do I leave the door open to expedite my man cave re-entry or spend another five minutes securing the premises? I’m lazy. I leave the radio on and the door open.
Have you ever tried putting a coat on whilst sitting down?
The rules are, you are allowed to bend forward but your arse is glued to the seat. More time. Putting shoes on, from a wheelchair too tall for you to reach the ground with hands and feet? I have more tricks for that.
Dustpan and brush.
Clearing a mess on the kitchen floor.
(It goes all hard and crusty.)
Anything requiring the strength of two hands.
The entertainment corner.
DIY (Hate it anyway.)
Anything low down in a corner.
I always have a seat when travelling.
The kindness of Tesco delivery people.
Almost everyone is helpful.
Getting to talk to Tanni Gray-Thompson in London twice.
The aforementioned friends and family. (Old and new.)