Monthly Archives: June 2017

Nice.

So… people ‘ ahead of me’ time-wise, in the paralysis game, told me that post injury, the dynamic with friends changes. Most friends drift away, they said. It’s all a bit too much for the normals to keep up the charity element, they said.

In my own case, I am paralysed and now divorced too, so there’s another reason why people might disappear.

The thing is, that no matter how much you try to logicalise it, for the wheelchairists there’s always the little voice that says ‘ it’s because you’re in a wheelchair that they are like that ‘. It doesn’t matter that you are told otherwise, the voice is still persuading you that the wheelchair is the real reason.

When i don’t get invited to things now that I definitely would have been invited to before, it’s really not a good thing for me to spend time thinking about it, and i try very hard not to.

Except the bloody voice won’t let it be..

Tomorrow is a party that I’d have been invited to, probably before anyone else was. Now I’m not invited at all. I’ll do something else, for sure, but the little voice won’t let up. ‘ It’s because you’re in the wheelchair mate, not because they don’t like you anymore….’

That’s a lovely choice, isn’t it?

Of course, it could be both. You’re in a wheelchair AND they don’t like you…

I’ve got it!

Having delved a little into the online dating concept, I’ve realised an obvious plan/tactic.

Ok, so I’ve worked out that :

Women are ( on the whole ) more caring, and better at ‘ looking after me ‘ … and that :

Men are ( on the whole ) stronger, and more technically minded ( so better at my various wheelchair attachments, involving nuts and lèvers etc  )

It would appear that on the dating sites ( and I’m only on one for ‘ straights ‘ ) there are a percentage  whose profile picture is say, of a male, but whose say, 3rd and 4th pictures, is the same male but in a dress and wig, with lots of makeup.   See, that’s exactly what I need ( not as a girlfriendboyfriend ) in a carer – a strong man that has a very feminine side!

Bingo!

 

The Need for Speed..

When you’ve lived life at a certain speed for, well,  all  of it, it’s not that easy to adjust to people that live life at an altogether different speed.

I really DO expect/ hope that my carer(s) are ‘ in tempo ‘ with my innate pace… walking along the street/ doing things for me etc etc.

I was shown this today, by Pia, who’d helped me yet again to get something done.

This video is exactly how life is for me, in terms of my relationship with certain of my carers….

A contribution of mine.

Having been elected to the Council of the British College of Optometrists,  I have used my newfound area of expertise, to good effect.

I wrote a ‘ Guide to testing the eyes of patients in wheelchairs’ . I won’t copy it to this blog, as it a bit optometrist’y, but I can  talk about it, obviously.

I am, after all, probably fairly unique in being on both sides of the table – having been able bodied and examined the eyes of lots of wheelchairists, and am now one of them myself! Who better to write the Guide, than myself, I reasoned….

As well as the practical stuff, there is always the ‘ interaction factor ‘ to consider.  I am continually surprised by the awkwardness of the public ( or some of ) when it comes to talking to me. I accept that I don’t look like I’d be that clever, but  before my injury people would talk to me without too much difficulty, but now some don’t appear able to. At the doctor’s the other day, I told the receptionist that I had an appointment at 2.45, and was here… she replied, not to me, but to my 15 year old daughter, telling HER where we should wait to see the District Nurse, as if I was completely invisible…. and that was in a doctors’ surgery. What chance do I have elsewhere..?

In my Guide I have addressed this issue, saying that physical detriment does not mean that mental detriment necessarily follows…

I’ve said to apply The Stephen Hawking Rule …

THE STEPHEN HAWKING RULE – HE’S IN A WHEELCHAIR, BUT HE’S A LOT SMARTER THAN YOU ARE…

( aka  don’t you dare talk down to him )

 

Sunday.

Blimey, even just one drink can alter my mood, I’ve realised… so I may have to knock it on the Ed after all, it seems?

Juju, Pia and I saw the very talented Bone Band, starring Russ Stewart on vocals and keyboard, last night. Thanks Russ for the invite!

Thanks too, to Jo for again cooking for the Indifferent ( me ) on Monday, and for the Bennfs for visiting, to Cherie as always, to my new carer ( only temporary ) Miriam, to Victoria, to the Chiswick District Nurse. Good to catch up with Lal, and to watch Sody do her thing in Glastonbury today- she was just incredible 🙂

I’ve managed to pimp my wheelchair ride yet more today, relocating yet more bicycle lights onto it, as the nights slowly draw in and my bus lane trips are increasingly in the gloom. If a car crashes into me now, then it’s either deliberate or driven by the visually bereft….

Btw, Glastonbury is just brilliant viewing, and the older acts are definitely owning it this year. Well, except for Sody obviously.

Adventure.

The UTI was nipped in the bud, I’d say. No symptoms of depression or madness this time.

i also think that my ( almost ) alcohol free life is paying dividends. I don’t wake up feeling down, I wake up feeling realistic.

Yesterday was a bit of an adventure. I had a Council Meeting near Kings Cross. I had planned a route – Hammersmith & City tube line from Hammersmith, then get off in Kings Cross and travel by chair to Euston Road ( 0.6 miles )  – easy/ an hour.

I got to Hammersmith by bus ( slowly ). At the station  entrance  I was told that due to the Grenfell fire there was no tube running…. so I want across the road to the District Line, knowing that that way was far more complicated, via the few stations that are accessible to wheelchairs.

Plan was Hammersmith to Westminster to Green Park to Euston –  4 stations and 3 tube lines, each change requiring lifts up and lifts ( plural ) down.

The ‘ modern ‘platforms have raised area where the few  wheelchair space carriages stop adjacent to. In theory that’s  marvellous, except in bloody practice the driver doesn’t always do that. You don’t get long to get on, so I had a foot in height to mount, and a foot in height to dismount. A foot to me is IMPOSSIBLE without someone to help. I had my new carer, and guys that jumped up and assisted. It wasn’t the greatest experience…

At Euston, more was to come. There was no bloody lift!… from the platform to the street level! At that point I thought F*** it, I’ll take the escalator… now that route is both not allowed and obviously risky…. one slip and I go tumbling all of the way down… well I would if I let go, right?

On that basis, I wheeled on, and held on very tightly, the chair leaning back at 45 degrees, up 3 different escalators. Guess what, I’m still alive and now far more stations are suddenly accessible!

Go me….

I’m normal.

A lad of 23 posted on the Spinal Cord Injury group  that I belong to. He said that he’d been feeling suicidal for a while, and couldn’t get past it. He’s been paralysed since 17 years old. His profile pictures are all of him walking about and fooling around. There aren’t any of him post injury.

About a hundred people replied, all spinal cord injured ( you have to be to be in the group ). It is obvious that nearly everyone that has my injury gets these thoughts, regardless of severity of paralysis. Depression is an inevitable consequence of SCI. So many people have tried to kill themselves, or been on the verge of repeatedly. The ‘ survivors ‘ all broadly say the same things, that despair and loneliness exists even in a crowded room, and that nothing makes up for the loss that paralysis gives you.  There isn’t any compensation for the things that you are unable to do, but you do have to other things to fill the gaps, and do those things as much as you can, to distract yourself as much as you can.

So many are hanging on by their fingertips, and have been for years. There isn’t a bright light at the end of the tunnel, as there isn’t a cure for paralysis, so it’s a tricky place to inhabit, the world of SCI. Antidepressants are the norm.

Knowing that my own thoughts are ‘ normal ‘ for my circumstances helps a bit. One man employed his best friend as his carer, and said that was the best thing he ever did – I like that idea!

Today I have a lot of things that I’ll do – all good things ( all gap fillers )

My current carer hasn’t worked out – language barrier etc etc etc  – i end up ‘ looking after ‘ her ….another problem is that we can’t fit into a lift together. African ladies can have quite ample bottoms and corresponding stomachs to counterbalance,which makes them quite lengthy from back to front –  lifts are not an ideal place for me to be alone in, as getting out can be tricky –  so tomorrow I have a different one starting – let’s see how that goes.

It’s ARE…

It’s only since I’ve been online dating ( a bit ) that I’ve come across the question/ expression ‘ how’s you ?’

Forgive me for being grammatically particular, but ‘ how’s you?’ doesn’t exist in the English language, or at least not that I appreciated. It’s presumably short for ‘ how is you?’ so therefore not right….

So how come I’ve been asked it about 20 times online? Obviously I can’t help myself ( Tourette’s, don’t forget ) other than to say something  ‘questioning ‘ about this  phrase.

How can I have got to the age I am without ever having been asked ‘ how’s you?’ and then I get asked it all the time online?  Maybe I’m speaking to the same person,  who has 20 online personas?  That must be it – I’ve worked it out.

How am I, though?  I’m ok. I saw my daughters today,  which was a very good thing for me.

That worked…

Eight hours at a party, surrounded by alcohol, continually offered it, and I failed…

Well, I had ONE drink, after about 6 hours – only because I hadn’t tasted rhubarb gin and tonic before.

The not drinking was easy, it was when everyone started dancing that I made my excuses and left – I miss that more than the drinking.

Thanks to Jane and Simon, to Kate, to Jo and Gary, but most of all to Sophie for inviting me. I blogged about this girl ages ago. She’s 16 and incredibly talented. Looks like I was right then – next Sunday she plays at Glastonbury ( BBC talent stage, BBC red button, on at 3.30 for 45 minutes), and then leaves for record signing deals in LA..  Along with everyone else that knows her, I feel very proud.

Look out for SODY – remember where you heard it first!