Saturday, 26 May 2012

Drive By

I can't believe it’s been nearly three years since I got my first motability car. For those of you who don't know what that is, it’s basically like a contract hire scheme that means the money you get for having a disability doesn't come to you but instead pays for your car each month. For me, it’s a Godsend. I couldn't manage without my car; even on good days driving is a struggle let alone having to haul my ass to the nearest bus and train or whatever involving walking, carrying stuff, uncomfortable seats etc. Anyway the act of doing anything is tough when you have a bad day with RA but trying to get yourself somewhere with no transport is even worse.
So my car has pretty much meant I can have some level of independence, I wouldn't be able to afford one if it weren't for this scheme and I certainly couldn't rely on friends and family to taxi me around to work, drs appointments, hospital appointments and anywhere else I want to go. When I first got sick, I didn't have a car as I took the bus to work. At the time I had to start asking my partner to drive me to work as I couldn't bear the painful walk to the bus and then from the bus to work. It was a frustrating situation for us both and took its toll.
So I looked into the motability scheme and tried to sort it ASAP so I could regain some of my independence. I noticed whilst trying out cars the strength in my wrists, arms and shoulders was deteriorating and has done even more so up to this day so rather than trying to painfully change gear and mess up my knees even more with clutch control I went for an automatic car. This was the best thing I ever did as driving on my worst days is not such an unbearable experience. Getting in and out of the car is another thing... but can't really do anything about that other than having some kind of walk on vehicle (wouldn't that be great?!)
Anyways over the past nearly three years that little car has meant the world to me. It’s taken me everywhere and been with me on the journey through my first years with RA. It took me home to my family when I had to leave my 'former' life behind after my first heartbreak. It’s driven me to appointments where I was told treatment was unsuccessful and appointments where I was told treatment seemed to be working. It drove me to my friends when my heart was broken again after trying to make a relationship work. And it continues to carry me to my treatment days; with my mum in the driver’s seat on the return journey (driving after a full day’s infusion and all doped up is not a great idea!)
I love that car for so many reasons and what it represents, but it also triggers some negativity. For example, I've mentioned before about the infamous blue badge incidents where I've been shunned by people, shouted at for abusing the system (as apparently I don't LOOK like I need a blue badge - didn't realise that to qualify for one you had to look a certain way!) And I suppose jealousy. The jealousy comes from driving around in a nice car, when some people think I don't deserve it. I don't deserve to have a decent car if I am not paying properly for it.
But you see, I am paying, and I am paying in more ways than you can ever imagine or see. Firstly, I pay a fair chunk of money each month to have the car, yes I PAY for it. The pain, horrendous fatigue and every other symptom I feel daily is a high price to pay for something shiny with wheels. Frankly I'd swap you the car for a wheelbarrow if it meant not living with this disease. It’s one of the small 'perks' if you can call it that; I prefer to think of it as a 'support', that comes with having a disease that is disabling. I have two bloody new hips to show how disabling my disease really is. I have come to think I'd like to take the following around with me in the car; my medical notes (which now amount to about a million pages), the x-rays of my ravaged bones and joints, my two old hip joints nicely preserved in a jar, the wrist splints, walking stick, knee supports and the stacks of pills and injections and infusion bags and machines.. Just to prove how much I do qualify for the sodding car and the blue badge.  I don't actually think all that would fit in my car, but it would shut some people up who dared to question why I parked in a disabled space or why I got to drive round in a shiny car when I'm broke. Shut it. Just shut it, move on and complain about something else you don't have. I could sit here and moan all frigging month about the things I don't have and want, but those things don't include a shiny car, more like a decent night’s sleep, a day without pain, a knee that's not the size of my head, my own hips back etc etc (the list goes on but you get the point-they are not material things, just the basic desires of anyone to be healthy and to be supported).
So let me tell you jealous individuals who crave to have a car like mine or wish you could park nearer the supermarket doors... There is so much more to life you should be wishing for and I am sure if you swapped lives with me for one single day the car and the handy parking wouldn't make up for the life changing disease you have gained in return. Just think about that before you judge people for doing certain things or having certain things, what consequences do they have to face to have whatever it is they've got? And would it be worth it? My guess is no. I need to swap my car soon (as you only get it for 3 years and then have to change it) so I am trying to decide what to get bearing in mind the adaption’s and support I need from a car (so no a soft top mini that I can't get in or out of is not an option).    Whilst I look through the brochures and others get excited or a bit envious around me I can't help but drift off and think how the hell did I get here? How did it come down to this deal that the kind of thing I worked hard towards having all my life like a good job which meant good wages and the ability to buy my own very nice car now came to a compromise... A deal where all that hard work means nothing and all I had to do to get a nice car (but with limited options) is have a horrific, lifelong, incurable condition that will probably eventually cripple me so the only thing I’ll be driving is the soft top wheel chair I will be strapped to? Ok, ok so I'm exaggerating there slightly and making jokes but it’s kinda true. So I intend to enjoy my hunt for a new car, ignore the envy, and take from life what little pleasures there are amongst the pain.

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