Sunday, 28 December 2008

The Ghost of Christmas Humbug

And lo, it came to pass. And it passed. And Christmas became bearable, and then quite cheerful. And there was peace on earth and goodwill to humankind once more. And my sister said she needed to think about the very long letter I wrote to her, the one where I spell out that it's okay to be disabled. And that's progress, believe me. She's thinking. I'm very glad.

You really have my aunt and uncle to thank for this dramatic turnaround in mood (oh, and the fact that I can hold on to a mood at present about as well as an eel in a fast flowing river).

We went to Wiltshire, where naked gardeners live and pigs go on the run from the slaughterhouse. My aunt and uncle are musical types there and are very good at looking after guests, whatever state they arrive in.

My bile was evaporated by good cheer, small acts of kindness (the tea that arrived silently next to my bed when I had all but passed out after finding the journey too much...the Chopin placed on the piano to encourage me to play, alas to no avail but it was the thought) and the large quantities of cordon bleu standard cooking.

It was 24 hours of contentment. And much appreciated. Sadly I am now back in the Midlands. Had I remembered earlier in the week that I was going to Wiltshire, I may never have written Christmas is Bollocks. Which in a way would have been a shame, as I have been humming it on and off in a private joke sort of way. And anyway, I feel that life would be very boring if it were as perfect as life in Wiltshire seems to be all the time. Which is, of course, a complete illusion as my aunt and uncle have just as much to put up with as the rest of us. It's just that they do it in very lovely surroundings.

So yes, for the time being my edges have been softened. And I can daydream about my escape from this complete shithole to delay the return of despondency.

Sunday, 21 December 2008

Christmas is Bollocks

Right, forget the compilation CDs because this is the only Christmas song you're going to need. To be sung with gusto (or with Shane MacGowan)...

Christmas is bollocks!
A fa la la la laaaaaaaaa.
Christmas! Bloody bollocks.
A fa la la la laaaaaaaa.

Bollocks to fairy lights
And bollocks to wine
And bollocks to Christmas cards
To thee and to thine.

Christmas is bollocks!
A fa la la la laaaaaaaaa.
Christmas! Bloody bollocks.
A fa la la la laaaaaaaaa.

Bollocks to tinsel
And bollocks to pies
And bollocks to presents
All wrapped up in lies.


Bollocks to turkey
And bollocks to cake
And bollocks to everything
It’s all a big fake.


Bollocks to crackers
And bollocks to fun
And bollocks to Yuletide
Merry Christmas, everyone!

Christmas is bollocks
We all know its true
Christmas! Bloody bollocks.
And this one’s for YOU.

Ta daaaaaaaaaa! I feel better now. What’s that? Oh sod off. Nuts to you all. Especially brazil nuts. I hate brazil nuts.

Saturday, 20 December 2008

I Hate This

My sister yelled at me today:

"You want to be treated like an invalid, like a, a, disabled person. I'm not going to, you're not a disabled person."

I am a disabled person. I screamed it down the phone at her:

"I am a disabled person."

But no, apparently I'm not disabled because I walked in town last weekend. This 'miracle' proves that I am not disabled. Forget the fact that I was in bed for several days after, and went straight into a wisdom tooth infection.

Oh, and my eyes burn too brightly these days, apparently. My sister said in our 'conversation' if it can be called that, that when we met up one time recently my eyes were burning at her like I wanted every word I said to be hung on.

Yes, that is true. My eyes burn this brightly in rage against what I am going through. Yes, I want my every word to be heard. Wouldn't anyone who has experienced wholesale rejection by everyone they once loved? I am so thankful I can say "Except my son." But what a weight on his shoulders. Wouldn't any human being imprisoned and beset by daily bodily tempests, ignored, rejected and isolated, burn too brightly. What was it Dylan Thomas wrote?

"Rage, rage against the dying of the light".

But that is not what I rage at, actually. My Dad did, when he was dying, but I rage at the fact that what I am going through is being treated as a death. I am not dying, and the light is still on!

Hellooooooooooooooooooo, I am still alive people!

Stop burying me.

Saturday, 6 December 2008

I Love This

There's something about it that reminds me of fairytales. Probably because I'm reworking one at the moment. I don't understand this song at all! Is that why I love it?

Thursday, 27 November 2008

Let's Get Quizzical

Ahem. There's a quiz over at Donimo's Chronic Holiday blog. And so the Monday quiz lives on, popping up from time to time amid assorted postings on DDT wallpaper, Warholian hamburger eating and all manner of strange and wonderful material. It's been some time now since Donimo was turfed out of her home by a large amount of sewage. Blogging from a hotel room is tricky, but she's managed to put together a fantastic multiple choice based on something wot I wrote - with buttons and everything.

The subject is Back To School. With a twist.

Thursday, 13 November 2008

Feeling Good

I am pleased to report that having got over yet another wisdom tooth infection, I have had a few days of general contentment.

We have put some curtains up in the front room. This makes us both feel cosy and warm (er). We have been baking cookies and cakes. Watching a couple of good films. Drinking hot chocolate. And last night, because access, so it turns out, is so good at a theatre in town, we got to see Edward Scissorhands the ballet. Suddenly something that was totally off-limits is actually possible. Yes, the shades and earplugs were present as ever, but the seats were comfortable and the stewards nifty with a wheelchair. All in all, it was a brilliant way of introducing my son to ballet (though if I'm honest, I expected a bit more...ballet).

Oh, and I'm writing a play. And enjoying my brain working again.

Tuesday, 4 November 2008

Quite Literally

It's interesting not having your regular PA for a while. Mine is off for a few weeks having just had her sixth child.

So in the meantime there have been two regulars. And then last week happened. Both my regulars were off for half term so we got a replacement. All I can say is the agency was struggling, and a lot of regulars had colds. It started with the bathroom...

Me: Could you clean the bathroom?

(pulls sour face) Where's the bathroom?

Erm, upstairs?

Now fair enough this was her first visit, but I clearly don't live in a flat and mine is an upstairs bathroom sort of house. She's the first person to ever have asked where it is. And then I wanted the rubbish taking out...

Me: Could you use the alley to take the bins out?

(pulls sour face, sighs, looks at ceiling) Where's the alley?

(in disbelief) Erm, it's outside and it runs along one side of the house?????

I wish I'd said "It's in the shape of a helter skelter and it runs from the top floor, round the house and finishes across the street."

But this was only the start of it. Seriously, this woman is not stupid, just perverse. So I have no qualms about recording our exchanges here. If she had been stupid I'd have respected her stupidity. But it was as if every time I gave her a helpful instruction she had to challenge it. It gets better...

Me: Here's two pillowcases to put on the pillows in my bedroom. The rest are in the dryer. They will be ready in a few minutes.

(a few mins later) There aren't enough pillowcases

(double take) Yes, as I said there are more in the dryer...

Or how about this? I was quite astonished and had to leave the kitchen for a few moments to compose myself...

(about to wash up) There's not enough hot water.

Well you could use the kettle.

(almost as a threat) I'll burn my hands.

(breezily) Try adding some cold water to the bowl first, then you can slowly add hot water from the kettle until it is the right temperature???

Yes, I absolutely had to leave the room at that one. My home support worker (who was visiting at the time) also left the room and collapsed in giggles in the front room. In fact, we ended up going out for a while to return a manual wheelchair I'd borrowed from a local shop. I had to get out, even though I was worried about leaving her.

Thing is, each of these utterances was delivered with what I can only describe as a 'meaningful look'. I can't describe it, but it was as if she wanted to find a problem and present it to me to see what my solution would be. To finish, here's my son's favourite (it was half term last week so he got to be hugely entertained by this person - we ended up calling her Grumpy Cow)...

Could you put the hoover under the stairs?

Where's under the stairs?

(cringing) Erm, under the stairs????

Priceless. Which is exactly what I should write on the cheque when I get the bill from the agency.

Tuesday, 28 October 2008


It's nearly upon me. A whole ten months have gone by and I will in a matter of days be free of benzodiazepines.

Before I harp on I know there may be some people reading who use or have used these drugs, and sometimes for good reason. In fact there are often sound reasons why people turn to prescription medication. But in my own experience the damage far outweighed any benefit there could have been. For a start I have a liver condition that makes metabolising drugs difficult. In itself it is harmless jaundice, but put my liver under strain and the jaundice can become a bit more serious. I also have a neurological condition that is not necessarily helped by bucket loads of psychiatric medication. And they were forced on me rather than taken willingly. I'll stop short of denouncing benzos as pure evil, but they have certainly represented that in my life.

Back in January I decided it was time to be less drugged. To achieve my long term goal (my whole withdrawal programme spans three years - still three other drugs to go) I initially needed an increased dose of Valium to wean myself off the sleeping pill Zopiclone. This was achieved in a few weeks, and then the long Valium taper began. I descended into a persistent brain fog and my functioning became extremely basic. My outlook also became markedly myopic. I am too ashamed to link to my contribution to BADD this year, but it was me going on about myself in a way that had very little to do with Disablism or Blogging Against it. It was the drugs so I can only express regret and hope to do better next year ;-)

I didn't even know I'd become so introspective until I really started to emerge from it. In recent weeks I've been blessed with a rebirth of my senses. It started with colours over the summer. Then I started to enjoy cooking again, and savoured aromas and flavours in a way that brought back memories of four years ago. Being on Valium, in my case, has been like being buried alive. So coming to life again has been a revelation and a really unique experience. After my senses words started to return, then feelings. And for a while that was very hard, as I had a lot of feelings coming at me at once.

I had a rough time with each reduction in medication on my taper. I reduced at a rate of 1mg a month and suffered IBS, stomach cramps, muscle spasms, hypomania and sensory disturbance with each cut. I've also been through rage, paranoia and intense misery. The Samaritans came in handy a few times. I'm currently at 0.5mg and am soon cutting to 0.25mg. As I said, it'll be a matter of days and I'll be free.

And here's where the benzo rant comes in. It is indeed a freeing, a release from a purgatory I would not wish on my worst enemy. My heart sings with every new feeling of contentment, happiness, joy even, that comes my way. In many ways I still have many restrictions in my life, but somehow knowing that they are not down to being under a chemical soup, I accept them more readily and with less hopelessness. I still use a mobility scooter, cannot work, read at length, watch TV or films much, and still find listening to music tiring and confusing. So my CNS is still jangled, to say the least. I still need a minimum three rests a day. And I don't expect a miraculous cure at the end of all this.

But what is important to me is recovering my Self. Pretentious? Possibly, but when you have actually had your essence removed by the very people who are supposed to be 'caring' for you, when you realise that you are far better off without input from mental health services, when you go through emotions like betrayal, anger, grief and disbelief, the Self returning is a triumph.

To recover one's Self when it has been so abused as to have felt like little more than a bloodied, maimed corpse is freedom indeed. The internalised sobbing, sometimes screaming, that punctuated my days has at last receded. I have been held hostage, so to be free is to feel joy and to know that more joy is coming to my life.

Thursday, 16 October 2008

A Little Quiet Time

Well it's been manic since the fire. And mania is my least favourite state. Fuelled by shock, benzo withdrawal and lack of sleep, I have found myself engaged in compulsions that must be broken.

Like weighing every single item from my Grandmother's house clearance that has been demanded by She Who Hath No Name and Lives Abroad. In a bid to get on top of the situation I went a bit OTT on the postage research and could now, feasibly, work for the Post Office offering a consultancy service on volumetric weight calculations.

It had to stop. So it has stopped. Thank God. Only to be replaced by manic research into moving my Gran's savings. Though in the current climate I feel I am not alone in tearing my hair out and wondering what to do for the best.

And, as if sensing with that finely-tuned sixth sense of hers that I was all at sea, cusp sent me a lovely present in the post that has soothed, relaxed and reassured. Thank you cusp, you are a love. And I smell gorgeous for once.

So at last, I have calmed down. A bit. And I am seriously ready for some quiet time. The decorator who will be repainting the bathroom asked me yesterday why I don't just move into my Gran's house, as I was moaning we hadn't let it yet. Ha, ha aha ha ha (and thrice ha, ha aha ha ha). Like I really want to be that enmeshed in family? And like I can afford the rent I'm charging? Anyway, we got a tenant today.

Here's a picture of a strawberry tartlet to celebrate.

Tuesday, 7 October 2008

Business As Usual

Well, someone somewhere has a sense of humour because having moaned about being cold we had a house fire on Sunday night.

My son was getting ready for his customary bath when a tealight caught the shower curtain and within seconds we had a raging inferno (well, okay, a not insignificant fire). So what do you do? Ignoring all advice I hurtled into the bathroom, grabbed a basket and bailed some of the bathwater in the general direction of the flames. Then we legged it, choking on toxic smoke.

The fire brigade arrived within three minutes and put the remains of the fire out. We were given oxygen in the fire engine for smoke inhalation. Hospital proved unnecessary because we only had a lungful or so each. Enough to cause a nasty cough, but not enough to do any lasting damage.

After an hour of general mayhem we were allowed back inside. The bathroom is a bit blackened but will be okay with a lick of paint. The shower has been obliterated as the curtain fell on it and sort of enveloped it in molten plastic.

Having said goodbye to the firemen (who fitted new smoke alarms for us and gave us some general safety be careful with candles) my son asked:

"Can we play Cluedo now?"

So we did. And the very next morning he went off for a week long trip with school. A bit fazed but ok I think as I haven't had a call and I did put the centre he's staying at in the picture. He's probably glad it's an outdoor sort of week.

An electrician from the letting agency is currently checking over the electrics, as it was lack of lighting upstairs that caused us to be using candles in the first place. He looks like Devendra Banhart. Which is nice. He's got to come back tomorrow to fix the wiring. Every cloud...

Friday, 3 October 2008

Keeping Warm

So my plan to not have the heating on until November has fallen at the first hurdle. It's cold. I am ill. I need to be warm. So on goes the heating. Damn.

It really pisses me off that you have to be elderly in this country to get help with heating bills that's actually worth having. A winter fuel payment, a social tariff that's guaranteed to pay...yes I know it's still a drop in the ocean for many, but some of us are without help altogether. When I enquired recently with my provider Npower I sailed through the checks. I was so happy and warm inside I was ready to share the good news at Ouch! Then they told me two weeks later that because I was on a dual fuel online tariff I wasn't eligible for a social tariff. Whaaaaat????

So I am back to square one. Saving £100 over 24 months is not the same as getting £250 a year knocked off your bill to help with winter fuel costs.

I left Scottish Power because they failed to inform me that they had introduced a social tariff back in February this year. I am still paying off the winter bill from last year, plus over £100 a month with Npower.

Whilst I await a resolution to my case, which has to involve something more practical than taking two showers and two baths a day to keep warm (when you get into bed after a shower or bath you stay warm longer...but of course you are heating water, which costs money) I thought I'd amuse myself with some top tips.

So here are my Top Tips for Not Dying of Cold This Winter:

  • Warm yourself up by writing angry blog posts and letters to your snug and smug MP
  • Have a bonfire permanently going in the garden. That way you can go outside to get warm
  • Burn all the furniture...only good for one night though
  • Ask your son's school if you can become library monitor (full time, five days a week with a bed please)
  • Get on the bus and stay there
Now this last suggestion isn't as mad as it sounds. Birmingham is home to the Number 11 bus route, which fortuitously passes through my area. It actually passes through, or around in a circular fashion, most of Birmingham so that's no surprise. The Number 11 bus route is officially the longest bus journey in Europe, at 27 miles and three hours. Crikey, that means the bus only travels at an average 9 miles an hour. And it is a local in-joke that pensioners ride it all winter to stay warm.

Only now the joke's on me. How I wish I hadn't chuckled all those years ago. Being cold isn't funny. No matter how old you are. And once you are in possession of a free bus pass, it becomes quite tempting. So, I've decided I'll take a thermos and my camera and join them one day next week and report back here when I've done it. Oh boy, I can't wait. Three hours of fun, fun, fun. But hey, at least my fingers won't be dropping off.

Sunday, 28 September 2008

Music Matters

I had a moment of extreme sadness tonight where I suddenly felt, quite strongly, the full force of unlocked potential.

It's one thing to have one's own ability to enjoy and perform music impaired, but quite another to not be able to pass down musical ability and nurture it in someone you love.

I've done my best with piano lessons but my aunt and uncle weren't wrong when they suggested that perhaps proper lessons may be in order if my son is to get serious about it. After all, I never trained as a teacher. They both did, and though they wish they lived nearer so they could teach him themselves, they did the right thing suggesting he gets lessons.

Anyway, that's a slight tangent. What got me tonight was the fact that since we moved out of nursery rhymes I've not heard my son sing a song all the way through. And that struck me as quite incredible. Then I started crying.

Now, I can see that it's not all my fault. Apart from having a condition and a prescription that together have done a great job of destroying my senses, I am also up against the National Curriculum, which places music firmly at the bottom of its list of priorities.

How can it be so? Doesn't anyone in education recognise the value of singing on a regular basis, of having access to free music tuition and regular music lessons within the timetable? It should be right up there with Literacy and Numeracy, Art and Science. That's what I think. But the days of singing en masse seem to be over. I used to sing in assembly every day. And in a choir at primary school, and then in a Saturday music school, and then at GCSE, A Level and in the university choir. And several shocking bands. But we won't go there.

I know a vocal coach locally. But I think my son is now a little too old to be learning World Music and shaking a tambourine in a room full of earnest hairy mothers with their flora and fauna-named offspring. Which is a shame. Sort of. To be honest it's the only access to group music around where I live, and I suspect in many other areas. The years he would have enjoyed that with me have disappeared in a blur. And that's what I'm struggling with. It's a huge chasm, a divide that cannot be bridged.

So I'd like to share a memory with you. When he was very, very small my son stood in the middle of his Grandma and Grandpa's living room and shyly managed to sing Twinkle Twinkle Little Star. All curly locks and big brown eyes, he sang it very softly and yet with that magic only music can bring of knowing he was sharing something that brought pure happiness.

Sunday, 21 September 2008


I have some news, and a tendency to wiffle at the moment so this will be brief.

Contrary to what my brain and body are both telling me is possible, I am attempting something rather ambitious. I am doing it on the precept that:

The foggy mind is equally valid and so should be given the chance to express itself

And so, I am embarking on a course in writing plays. The absolute bottom line for me is that I do not expect myself to perform at the level I enjoyed when last studying. This is an online course, it doesn't go towards a degree and it is purely for me to exercise the grey matter.

I would like to say how marvellous the OU has been in setting this up with my requirements in mind. I have transcripts of audio and audiovisual material and will be able to arrange flexible deadlines. I can do a lot of reading lying in bed with spiralbound textbooks and will save online activity for when I feel up to it.

I would love to be able to just write. But after four years steeped in psychiatric medication I feel my brain could do with a kick-start.

Wednesday, 17 September 2008


An email. Just to show that I think about more than what I'm having for tea on any given night ;-) I sent this at the weekend to the organisers of this year's local arts festival.

I am writing with some thoughts about scooter hire for future festival events. I was hoping to come and see my sister in a choir performance at the museum and art gallery tomorrow at 4pm. A phone adviser informed me, incorrectly, that the art gallery has scooters. They don't but they do have manual wheelchairs. Unfortunately as my son is quite young he is not able to push me in a manual chair.

I have my own mobility scooter but it is not allowed on public transport. So I called Shopmobility. Their closest centre is closed on Sundays so couldn't help me get to my event. I called the other Shopmobility across town, and they are open but only til 4.45pm. Luckily for me my sister has another performance outside a pub at 1pm so I am hiring a scooter at 12 noon and coming all the way across town and hoping it doesn't rain.

Here are some thoughts for next year:

Could you hook up with the company who provides shopmobility scooters and help fund the opening of the closed shopmobility centre for the whole weekend? Shopmobility is a charity, independently funded. But I am sure a deal could be struck, given the positive publicity that would result.

Could the festival provide a central designated scooter hire location - perhaps hooking up with a major scooter manufacturer in a sponsorship/advertising deal?

I am certain that a press release publicising scooter hire for people with disabilities would lead to many more visitors to the festival from the disabled community next year. It has proved difficult this year for me to make the necessary arrangements to attend, but I hope in future years that it won't be so hard.

I look forward to hearing from you

Tuesday, 16 September 2008

I Want Something's Flesh

Yes, okay a shameless Withnail and I quote. I don't do it often but it really fits the occasion as yesterday I had my first red meat for a long, long time.

I did years on the theory that red meat exhausts the chronically sick body and should therefore be avoided. Then I read the opposite just before the weekend and thought "Sod it."

So yes, another post about what I'm eating. But the joy of savouring a lamb shank slow cooked with onion, leek, sweet potato, garlic and rosemary with roasted butternut squash on the side just had to be recorded.

Tuesday, 9 September 2008

Adventures in...

Slow cooking.

I won't go on at length but we've been stuck in a rut food wise for quite a while. The less energy I have the less imaginative I become. I needed a kick start and found this, which takes you to a goldmine of slow cooker recipes. And within this site, there's another link to even more recipes.

There are two advantages to slow cooking. One it's incredibly cheap (a slow cooker consumes about the same energy as a lightbulb, if not less) and two it's ridiculously easy. Other than a quick browning of vegetables and meat all you have to do is bung everything in there in the morning and leave it for six hours.

Things I'm going to try include meatballs, meatloaf, a whole gammon, various chicken and pork recipes, sausage and bean stew, thai veg curry, lamb knuckle (cheaper cut) and a few self-created casseroles.

I just couldn't stand the prospect of the same old stuff all winter. And I think my son, as he's growing a foot a week, needs some good fuel inside him.

Monday, 1 September 2008


Much excitement all of a sudden. Due to not doing much at all this summer I have managed to save enough for a small greenhouse. The one that I uncovered from the undergrowth last year proved to be beyond my capabilities where renovation is concerned so I gave it away on Freecycle.

Now, there are several things that get me very excited about resurrecting my greenhouse project. One, we will pay for it in six months if we utilise it properly and never buy crap bags of salad, EEC compliant cucumbers, tomatoes, peppers or French beans ever again.

Two, it will be fun.

Three, it will mean I can finally use my half price seeds bagged at Woolworths earlier this year.

Yes, I'm still feeling like death on a stick, but I figure that if I start eating properly maybe that'll help? It will give me something to do on the days that I can do things, and I can instruct my son in the art of acquiring green fingers for the days that I can't lift a watering can, which it has to be said is more days than not. He has no choice. Anything heavy or out of my reach will be his domain. And he will get to eat whatever he manages to grow. No more trips to the corner shop for fluorescent bootlaces. God, aren't I awful? Stupid old hippy mother with her Good Life notions.

To be frank though, if a school can get kids growing prize orchids (saw it on Gardener's World) then I figure I can get mine interested in tomatoes and suchlike. She said vaguely. This is new territory for me I have to say.

If anyone still reads The Beauty Offensive and has experience in these matters could you tell me if I can get away without a concrete base? Basically it's cheaper to get my tattooed gardener to put it straight on soil on it's steel base and infill with gravel.

I await responses with interest. But having been away for so long I won't hold my breath. Oh. Just scrolled down and forgot I worked out how to blog from my mobile only a day or so ago. Won't be doing it often though. They haven't worked out how to centre pictures, and that's not on around here.

Saturday, 30 August 2008

A Global Matter

This is exciting. I am blogging from my phone. Only a couple more days til i return to the big screen though. Can't be doing with texting at length!

Thursday, 21 August 2008

We're all going on a...

Jungle safari. Just to prove the sun did shine in August in the UK! No, actually this has turned into the month where there's been a collective and yet independently arrived at summer holiday from blogging. A stupendous notion. Lots to tell on our returns and a break from late nights and eye strain (in my case anyway) in the meantime. And if it becomes regular, I feel that September will have something of the excitement of a new term at school about it. Love to everyone else who is having a rest. I do miss being in touch with people online and wonder how my friends are doing.

When I came back from my Mum's, the crocosmia were out all around my pond. So pretty and zingy, so here's another one.

And a striped beast of the jungle was drinking silently from the water with one eye roving for a frog...

Saturday, 9 August 2008


Hi all

Away for a few days but okay.

Friday, 1 August 2008


I'm not going to try and predict the future but I do have to say that things may be a little unpredictable around here for a while.

The highs and lows are really draining me. This is typical benzo withdrawal behaviour. Sometimes I even question my quest to come off the nastier of my prescription medication. Why not just have a quiet life? I also question being in therapy as I think I'm hitting a rough patch. Then I realise I only have my therapist to talk to and I chicken out of stopping. So I swing from mania to exhaustion and back again, punch drunk and directionless.

But I do remember what a quiet life was like. A living death. And I realise that even though days like today leave me feeling utterly defeated, exhausted beyond crying and as emotionless as a zombie, that I must persevere. Ride out the nightmares, breathe through the panic, rest my eyes from exhaustion. Ride out the nightmares, breathe through the panic, rest my eyes from exhaustion. Ride out the nightmares, breathe through the panic, rest my eyes from exhaustion. Repeat ad infinitum.

The highs make it worthwhile for one thing. Going out, or even staying in, and feeling alive and happy is something I haven't felt for a long time. Now there are windows of it.

And I hope that even if there are more bad days than good for a while, the end result will be more good days than bad. More feeling in my life, more clarity in my life. More life in my life. Better writing.

Today I cooked an ommlette and a baked potato. And I wrote this about how I am feeling. And a friend came over. I could barely concentrate but I wanted to see her as she's having a baby anytime now. Loved her bump. And yes, I did pat it. I tried not to, as I remember just how bloody annoying it is. But I couldn't help it.

Monday, 28 July 2008

How To Do a Holiday in 24 Hours

Well today was very British. A 1940s theme at Avoncroft museum, complete with music, rationing, identity cards, air raid sirens and a skirmish between the Allied Forces and the Germans.

I feel that for once, pacing and keeping calm has seen me through a wedding, a night away and a day out all in 24 hours. Here's how I did it: I rested for two days, paced throughout last night and booked a carer through my local agency for today. He arrived at the reception venue bang on time and drove my son and I to the museum. Then in blazing sunshine he pushed me round in a wheelchair without complaint. We dived for shade and drank gallons of water at every available opportunity, and it all went very well.

The air raid was very dramatic. I couldn't get to the part where it was going on quickly enough in the wheelchair so I sent my son off to experience it for himself. It occurred to me that children would have been caught in raids all the time without their parents. Then I felt a sense of unease at being in a wheelchair. I'd have been stuffed in a real situation! And I saved a special glare for the German troops manning a checkpoint in one corner of the museum. My son said the actual air raid was quite comical and 'a bit all over the place'. I think he wanted more gore and groaning, but this was Worcestershire on a pleasant summer's afternoon.

If I may for a second extol the virtues of going out with a carer you've never met. None of the usual moans one can get if going out with family. No need for endless chit chat - it's enough coping with being out to be honest. This particular carer was a full-time nurse at a local hospital so had I suffered heat stroke he'd have sorted me out. As it was he was sensible enough to keep me in the shade every time we parked up in the wheelchair. And he pushes people in chairs every day, so he was very, very good. Even gravel was bearable.

I felt totally relaxed, so glad to not be navigating crowds by using my scooter (I didn't realise how much focus this takes, and what it can take away from a trip out...this is my first push, so to speak). There were a couple of 'moments'. You know the sort, people not talking to you directly, or talking to you like you are five. But I just didn't care. We ate ice cream, listened to 40s music amid granaries, Toll houses, all manner of buildings. Here's a lovely photo of a Norfolk windmill, not in Norfolk. Avoncroft is one of those museums that transports and rebuilds historic, important buildings to preserve them until they really do fall apart. A lovely quaint little place.

Just seeing how much my son enjoyed the weekend was the icing on the wedding cake. The reception was pretty tiring but it could have been a lot more challenging had we all been inside. As it was, most people were in the garden as the weather was so glorious. So my fears about pounding music were allayed. I went in to watch the first dance, and promptly left again. One belter was enough. I chatted to a couple of people I knew, then went for a rest. We were in bed by 11pm. I looked positively radiant at breakfast compared to everyone else with their utterly stinking hangovers. Actually, I looked as rubbish as always, but was in good company for once.

I'm going to get hold of a manual wheelchair for the rest of the summer. Bugger staying in. The scooter is fine for local trips but I want to see farther than my corner shop or supermarket. And as I use such a good agency, I feel that even on a bad day I could benefit from being pushed around the park. This weekend was totally about freedom and independence. It was great! Oh, and I promised my son we'd do another 24 hour holiday before he goes back to school.

Friday, 25 July 2008

Summer In The City

Last night was great. My neighbours had a sixties summer CD on and it drifted across to me, which is always a good way for music to happen where I'm concerned. I was having a bath and looking out of my window at the tree against the sky.

Windows open, sound of the city outside (why does it always sound better in hot weather) and The Kinks and co wafting over from next door.

I'm going to a wedding reception! First time I've been to one since becoming ill. And yes, I know I can't ask the DJ to turn it down. But the weather looks like it's going to be great so I'm hoping to just lurk outside if I need a rest. Failing that, I've booked a room. So plenty of recovery time available before heading back home. Plus it's not far away, which is why I took the plunge and decided we'd go in the first place.

Sunday, 20 July 2008

The Bitter Truth

Sometimes the truth hurts. This is going to cause a big collective Ouch! or possibly a Meeeow! It contains a valid point though so I'm posting it.

My ex is as I write still caught in what must surely be one of the biggest traffic jams ever known, trying to extricate himself and our son from a festival site. I was low on sympathy and big on self-pity today as I was looking forward to spending some time with our son on his return. Instead he's spent nine hours stuck in a campsite. And I've been stuck indoors wishing I was there.

So the texts were flying. I was annoyed, we both became unreasonable. I knew it wasn't, and still isn't my ex's fault. So what made me text the following? It was like a lightning bolt of pure truth blew the rest of our squabbles away:

"The huge irony is that had you learned to deal with me being disabled we'd have hired a camper van, been able to park in the disabled area and been one of the first out. Serves you right. Ha."

And they call Disability Bitch a bitch? You know what though? He texted back:

"Thanks. Fair enough. Some truth in that."
The truth really can hurt but even as I type it still rings truer than true. Would I have seen much of the festival had I gone? That's not the point. I would have been there because my ex accepted my disability and wanted me to be part of something, however much or little I actually ventured from the camper van of my dreams. Right, back to sulking. Not the best of days for any of the former members of our fractured little family.

Saturday, 12 July 2008

Sweet Shop Time

It's quite reassuring having a whole load of photos to look at when I've not been out. These are from the local Open Gardens scheme which is becoming an annual favourite of mine. It's very accessible, serves top cake and is in many ways more interesting than visiting a public space because each back garden is so different and so lovingly tended.

I think one of the attractions with this event is that we Brits do love a good nose around. My son and I took a taxi between four gardens over the course of an afternoon. Plenty of time to sip tea and eat cake in between taking turns with the camera. Maybe it's the area the event is held in, but everyone was very friendly, swapping ideas and having a good natter. I started this post just after filing the pix, promptly forgot about it and decided to finish it this evening to brighten things up a bit.

This one below was such a teeny tiny flower, but the colour packed into a space smaller than a postage stamp was really quite something. And yet, you could have walked right past it. I rejoiced in having my little fold-up fishing stool thing. Sitting down becomes necessary after a short time with me, and is an absolute bonus when photographing flowers.

Given there are quite a few more images I'll stop gorging for now and let a few pop up occasionally to add a splash of colour when things are getting drab.

Tuesday, 8 July 2008

And Then There Was One

I've had two little friends causing me a bit of bother of late. Sadly not imaginary, nor particularly welcome.

One in particular was causing mighty interference with my inner workings. So, yesterday Little Ms Fundal Fibrous Polyp was forcibly evicted, leaving Little Ms Fibroid sobbing "All By Myself" into an imaginary microphone, Bridget Jones stylee.

This is a brief post. Polyp removal is straightforward enough and can be done without anaesthetic. Given my risk of complications arising from anaesthetics, I took the plunge and endured seven minutes (yes, I eternity) of teeth-grinding unpleasantness.

The worst bit was actually in the recovery room when all the nerves surrounding my uterus decided to have a big internal firework display in protest at a major cavity being pumped full of saline fluid.

Still, although a little tired today, the pain was temporary and I am finally free of my unwelcome guest. All two centimetres of her. I find it bizarre that something the size of a grape could have been causing so much rumpus on a monthly basis.

I have to confess I felt quite chuffed when the consultant came in and asked if I'd feed back on natural pain relief. I agreed to be part of a polyp removal research project before it was done and it would seem, being a crip an' all that I will be most useful to them. And I thought they'd just laugh if I insisted on plugging into my relaxation music and huffing and puffing rhythmically.
Last time I did that I had a baby.

Saturday, 28 June 2008

The Bottom Line

Today I had a toilet installed by social services. Readers of a sensitive disposition are assured that no major detail will be gone into, though mild toilet humour may be evident.

It has been christened Bob The Talking Toilet. As I think I explained previously, this is a toilet that does everything but talk. It is both toilet, bidet and warm air blower all-in-one. It has elbow activated controls on the cistern so you don't have a flush to grapple with. And a foot pump to activate the bidet.

This is what sprung to mind on experiencing the bidet for the first time:

Lake Geneva's colossal fountain

It is wise to ensure that you are seated fully on the toilet with no gaps, otherwise the whole bathroom gets sprayed with water.

The dryer is also a little alarming. An electric element somewhere deep inside the toilet heats air with such rapidity that a strange burning smell is produced. Naturally, on first use I assumed this burning to be my bottom. But then I realised the smell was distinctly electrical.

So, somehow the inventors of this really quite amusing machine have managed to work with water and electrics. Whether I will live beyond a week remains to be seen. I think an eject button may be handy just in case the whole thing bursts into flames. Shame you can't just notch up the bidet a tad. That would be enough to both propel me into space and extinguish a bathroom inferno in one. Just be thankful I am not male ;-)

Saturday, 21 June 2008


There's a lushness sweeping over the country at the moment.

Although the unpredictable bursts of rain have been frustrating at times, the result is rich and abundant growth in parks, gardens, hedgerows and roadsides.

I'm noticing it every time I go out. I even want to do a Front Gardens Project on my route to school, celebrating everything that is good about making an insignificant patch of gravel or path something special. I plan to get permission, get other people involved to do their streets and put together an exhibition (if they'll let us) in the community centre. Our neighbourhood lacks trees, so front gardens are very special to me. And I have an advantage in sailing past at a slow scooter pace at exactly the right level to see what lies behind the garden walls.

In the past week I took my camera to an open gardens scheme and out into my own back garden where less is happening perhaps. But there are moments. I didn't get the clematis this year, but the rose is in full bloom and I promised Donimo some shots of Lady's Mantle after his beautiful hostas inspired me. Some leaves are made for raindrops. So my son and I went out and grabbed these...

My son took this one

I think I took this one

And I've no idea which of us took this one but we were just caught up in a miniature world of diamonds on green for a while

Saturday, 14 June 2008

Is This Progress?

This week I was sent a questionnaire by my local council. They are modernising services for adults with physical disabilities.

Modernising. This word is used in conjunction with the phrase 'more choice and flexibility'. As if the former is needed to achieve the latter. Maybe it is. But something jars, as if a 'more modern' way of thinking has to be adopted to achieve social inclusion. What does that mean?

The move is to be away from 'traditional day centres' towards community activities provided by the council, voluntary and private sectors. There is to be greater choice and flexibility, and wider availability of services at existing premises.

Everyone who uses day services (I don't as I am not well enough to attend a day centre) is to be offered an assessment of need and care plans will reflect the outcomes of this.

And that's the sentence that got me worried. As soon as assessments and care plans are mentioned, you know that there is the potential for people to disappear under mountains of paperwork and for very little change to be effected. And for people to not be able to access services they formerly had access to, either because the service no longer exists or because they are now being directed towards a new service, and one that may not be appropriate.

This is a negative response, I know. So I'll include more of the council's vision.

The 'vision' includes the following statements:

To enable individuals with physical disabilities to live as full and equal citizens. Recognising their rights to independence and self determination and providing access to local community facilities.

To develop a more socially inclusive model to 'traditional day care' giving people with physical disabilities and their carers more flexibility, choice and control over their chosen activities.

Choice and access to shops, leisure, arts, sports, education and employment in their local communities and in the city centre. (In line with the social model of disability endorsed by the council).

Access to information and support enabling people with disabilities to have choices about a accessing a greater range of activities.

To give people with disabilities more choice about the type, time, length and location of activity they wish to partake in, and who they wish to do this with.

To work with individuals in a way that they can express how and when they would like activities to take place for example in the evenings or weekends.

To promote disability awareness in the general population enabling better access to all universal services.

My questions are:

  • How are local community facilities going to meet the very different needs of people with very differing disabilities?
  • How will greater choice and flexibility be achieved?
  • How is the council interpreting the social model with regard to access to shops, leisure, arts, sports, education and employment?
  • How will the council promote disability awareness? Who will they consult? Will there be a campaign? How will a campaign be drawn up and delivered?

I told them on the form that I am currently unable to access any leisure activities as there are no facilities for people with my condition in my area. For me to access 'activities' they would need to be close to my home, and involve small groups of people with a similar condition to my own.

I ended up wondering whether I would be able to access any 'leisure activities' at all. I would not, for example, be able to access aqua aerobics at the local pool, golf, shopping sprees, loud concerts, college courses or employment.

But if they can sort a trip to a local art gallery, or painting classes at a local gallery, or photography classes for wheelchair users, or group relaxation sessions for people with debilitating physical conditions...well it does get one thinking.

I cautiously welcome the mention of the words 'social model' within a council questionnaire, but I do wonder what the eventual outcome will be. And I'd welcome your thoughts. Really, I'm not sure what to make of this one.

Thursday, 12 June 2008

A Journey

I discovered loose chamomile tea at a teashop last week. Whole flowers at £3 for 50g. Lovely taste but expensive. So I thought "I know, I'll grow my own."

This seemed like a great idea. I remember when I was very ill, a friend of mine had some Bulgarian friends to stay. They were shocked by my sickness and jaundice and when they all went off camping they spent a prickly hour handpicking me nettles, which are known to soothe irritated stomachs and improve digestion and liver function. How nice was that? I didn't know these girls (and they were girls, just 17 or 18) and yet they thought nothing of doing this lovely thing for me. In Bulgaria they regularly go out harvesting chamomile and nettles, borage and all manner of herbs for use at home.

Now, a bit of research has revealed that over an acre, a single worker harvests just over 1lb of chamomile flowers an hour. That's just ten 50 gram bags. Ten tiny bags an hour! Which then get packaged up and sell for £3 a piece. Slow, slow work, and hard work. Lots of bending down and the rules state flower heads only. Hmmm. I'm starting to wonder where my chamomile flowers are from. Croatia. Okay. Are they Fair Trade? It would appear not. How they are sourced? Who farms them? Who picks them? How much are they paid? Remember, whole flowers in any herbal tea are likely to have been hand-picked. So I go online and find after a long search that Fair Trade chamomile flowers do exist, but you have to ship them from the States. Fair Trade versus carbon footprint? Oh dear.

Now I really want to grow my own. But doing the maths and scaling down from an acre to little more than four square feet produces an amusing yield for the chamomile lawn I was planning in my back garden. Precisely 0.15 lb which is 2.4 oz, which is little more than 67 g. Which is not much considering purchase of plants and the time it would take me to rake the lawn for the flowers. And that's if any flowers grew at all. My garden can't compare to sun-drenched Croatia, or Egypt (another major source for chamomile flowers it would appear).

The Fair Trade versus carbon footprint dilemma is a tricky one. Shipping a bag of tiny daisy-like flowers halfway around the globe seems ridiculous. A bit like this post really, but hey, I felt it was worth checking out. So many things on my shopping list aren't Fair Trade. And I drink gallons of chamomile tea. So the guilt offsets any benefits gained from sipping the heady brew of whole flowers, that's for sure. It is lovely though. Sigh. If any UK farmer is reading this and has an acre to spare, let me know.

Maybe one day we'll have a 'Pick Your Own' situation much like strawberries. And that'll be because of global warming caused by all the planes carrying foodstuffs like organic Fair Trade chamomile flowers around the planet. Ironic or what?

Tuesday, 10 June 2008

Wheelie Travels

Well, since its repair my scooter has made it further than you think.

All the way to Canada in fact where it features in Donimo's Monday Quiz over at Chronic Holiday.
I've been a fan of these quizzes for a while and it was both an honour and a giggle to be asked to put one together. Be there or be square. What a great expression that was back in the day. But why was square considered so insulting? Be there or be hexagonal? Equilateral? Parabolalular? I flunked Maths. It's late. Forgive me.

Wednesday, 4 June 2008

A Celebration

This morning I was bereft. My scooter sort of blew up yesterday. Well, that's an exaggeration but there was a lot of smoke. A repair bloke told me over the phone he didn't want to charge me the call out only to tell me it was beyond fixing. Which was nice, but heartbreaking.

Then, after much persistence, I found a small family run company with no call out charge. They came to my house within an hour and found it was the brake disc rubbing against metal. Which was causing lots of smoke and a burning smell. Fixable, at a price but far less than what I was facing for another one off ebay. I will have wheels again by the weekend. Though I have to say had the Wheelchair Service provided me with a wheelchair I'd never have had to go through any of this. I'm still waiting. And I'm not giving up.

Suddenly being without my scooter was a huge shock. I had no idea just how much I need it, and I have no idea how I coped staggering about without one for so long. So, to celebrate, this came to mind:

Sunday, 1 June 2008

Say It Loud

It's OK.

You Don't Have To Think So Hard About
How To Say You've Been Thinking About Me.
Because I Know You Haven't.

The thing I love most about half term is time off from the playground. I hate it in there. It's a minefield of intricately woven social networks to which I no longer belong, unspoken prejudice and judgements and largely former friends who now ignore me or default to pleasantries.

To be fair there are lots of kids to chat to and it does me good to get out of the house and watch my son play. But the adults have normally scarpered long before I've turned the key in my scooter to go back home. These are the same people who, apart from a couple of exceptions, are happy for me to entertain their kids but rarely return the favour. So not only do I get discriminated against, but indirectly, or directly in fact, so does my son. I have memories of not being invited to friends' houses as a child because of how the other mums felt about my mother's mental ill health. And it pisses me off that 35 years later things are no different.

Something happened yesterday that really pissed me off. I bumped into a woman I see quite often in the playground. I was on the High Street. She said it was "nice" to "see me out and about" and asked me how I was. And then, as my son wasn't with me she asked me how he was. Which probably meant "Where is he? What have you done with him?".

Then she asked me "Does he mind?" before nodding vaguely at my seated position.

Mind WHAT? Me being on a scooter? NO! But I mind her thinking he minds. I was speechless and just shook my head with a dazed grin on my face. Which I suppose she took to mean "No, not at all."

When I think of a choice remark much, much later I often want to get it printed on a T shirt. In this case:

Don't Ask.
It's Probably A Stupid Question.

Does anybody else ever get this urge? Or am I just experiencing a double helping of anger with lashings of benzo rage?

Slogans I have fantasised about include:

How Am I?
Come Closer And Read The Small Print

Yes, The Weather is...
a) Shit
b) Lovely
c) Not Worth Talking About Really

Yes, You Have Seen Me Walking.
No, It Wasn't A Miracle.

Warning! This Is A Smalltalk Free Zone.
Tell Me Something Interesting or Piss Off.

I must emphasize that these are just fantasies. My son would be mortified. But oh, the feeling of satisfaction! I was always one for behaving badly.

There are many more of these, largely forgotten. I dare say my line in T Shirts would probably not foster greater understanding between the disabled and non-disabled. Do I care? I have a son. Yes I do. Without him however, I think I'd have been wearing these months ago. Loud and proud.

Stand Back! I Smell And Dribble.
And When It Amuses Me, I Fart.

Thursday, 29 May 2008

You Are My Sunshine...

This has had me sufficiently baffled twice now. Baffled enough to post here and ask:

"Why, why has Homebase got 36 barbeques currently on offer?"

I mean, come on. A cheap one, a mid-price one and one, just one, of those very silly ones I can understand. Maybe even two of the cheaper ones, but 36? What has led a DIY store to believe that people need this amount of choice, especially after last summer! The number, incidentally, comes from their television advertisement not the link, which is in fact a helpful buying guide for those venturing into unchartered barbeque territory.

What's fuelling this excessive consumption? It all smacks of Nano skins to me. No good to own something a bit cool these days, oh no. It has to be cool, and original. Want a barbeque? What colour? What size? What shape? Gas? Electric? Charcoal? Retro? Traditional? Big? Small? Where will it all end? Well, as with Nanos, with people all crowded round one murmering "Nice." And feeling nothing but empty and futile envy. But the drive for an almost solipsistic individualism pushes on. Not so much about Keeping Up With The Joneses these days as Stuff The Joneses Look At What I've Got.

Let me share a secret with you. Barbeques are not cool. Fires are cool. We had one last week and melted a camping saucepan full of chocolate by balancing it precariously on a plank. Then when the plank caught fire we somehow retrieved the saucepan from the middle of the embers and dipped strawberries into deliciously runny gooey sauce. Made entirely of chocolate buttons. And fire.

And please don't tell me about my carbon footprint. We had enough sooty ones all the way up the stairs to bed to remind me about that. It was a great gathering of like-minded pyros though. My son loves telling his friends "We're having a fire." And so do I. It has a certain frisson these days that "We're having a barbeque!" just doesn't somehow. And I don't think kids look quite as sparky-eyed after a barbeque as they do after a Boy Scouting meets Lord of the Flies escapade in my back garden. Yes, it can be quite anarchic. And we get to be very messy indeed.

Sunday, 25 May 2008

What Price Happiness?

Okay so we’re all hard up these days. Even the rich are noticing that food costs more. Gordon Brown is stacking up a raft of tax breaks to help them out. Isn't that nice of him? I'm sure the 10 pence tax band casualties will be thrilled.

Some rich people are even forsaking Waitrose for less salubrious aisles.

I shop at Iceland, and for two reasons. It’s cheap and it’s the nearest supermarket for my pregnant (did I tell you she’s pregnant?) PA. She herself shops at Iceland because she has five and a half kids to feed. She also likes their ‘You buy it, we’ll deliver it’ policy. Ideal for those who don’t trust supermarket staff to select their goods for them but still want it brought to their door. Plus carting home as much shopping as she gets through must be exhausting.

A lot of Iceland’s stuff is fine. Why pay more for store cupboard staples? What bugs me though is the distinct absence of what a friend and I have christened ‘happy chickens’ (and yes I fully expect vegetarians to find this most unfunny) and the other little perks that keep your spirits up during a credit crunch like, oh I don’t know, bags of rocket and spinach salad and red onions and Green and Black’s chocolate.

But as Sainsbury’s online just makes me spend more than my budget I tend to stick with Iceland and give my PA £20-£30 cash a week to see what she can get. She’s very creative and we eat well.

But sometimes I get fed up with budget food. So I tried an experiment today. Is it possible to make your own homemade luxury items and offset the blandness of it all without breaking the bank?

I started by totting up my crumpet consumption as it’s currently my main comfort food. I realise that when feeling particularly miserable I can get through perhaps three packets a week. Now, Warbuton’s crumpets are 67 pence for a pack of six. I consider this to be a cheap bedtime snack. And so in a bad week I spend £2.01 on cheering myself up.

Cheap but a bit samey. Plus my son hates crumpets. And they are not in the same league as chocolate.

I wasn’t going to go to Sainsbury’s today really I wasn’t, but the little voice whispering ‘chocolate brownies’ just wouldn’t go away. Then my son applied some devastating logic to my argument that it was tipping down with rain. Looking out of the window and examining the evidence he said: “There’s a lot of it, but it is quite small.”

So off I went on my increasingly clanky scooter in search of pecan nuts and organic chocolate. My son chose to stay indoors and draw cartoons. Obviously the rain wasn’t ‘small’ enough to convince him to accompany me, but the promise of chocolate brownies was enough for me to go out in it.

For the quantities in Nigel Slater’s brownie recipe, I spent 66 pence on free range eggs, £2.66 on Green and Black’s chocolate, £1.23 on unsalted butter (unheard of in Iceland) and 56 pence on pecan nuts. Yes, Nigel, pecan nuts. I don’t hold with his theory that nuts interfere with the purity of a good chocolate brownie. Nuts are essential in my book. The remaining ingredients, caster sugar, flour, baking powder and cocoa powder we had at home, and amounted to another 80 pence at Sainsbury’s prices.

That’s £5.91 for a batch of 16 brownies which comes in at 36 pence a brownie. Sainsbury’s Taste the Difference chocolate brownies work out at £5.57 for 16. Oh dear. But I bet they aren’t as nice as the ones we made. And no way would they have the top quality ingredients we used. Anyway (do you detect an argument crumbling as fast as a chocolate brownie? Have you even read this far?) you cannot possibly eat more than two brownies a day as they are so rich. I frequently however, eat two crumpets a day and that costs me 22 pence. Two brownies a day is, erm, 72 pence. Which is five pence more than a whole pack of six crumpets. Oh dear oh dear.

I set out to demonstrate that home-baked goodies are a cost effective way of enjoying a taste of luxury in these hard times of ours. I failed.

Or did I? What if the Waitrose exiles become so depressed at their new diet of broken biscuits and factory chickens that they blow £5.91 on a bottle of wine? It could well happen. But wine gives you a hangover. Chocolate brownies just make you go all warm and smiley inside. They boost Serotonin levels, sharpen brains affected by cognitive disorders, and homemade ones contain no additives. They are completely organic. As healthy as an unhealthy snack could possibly be.

My conclusion? Are you still reading? Nuts to Nigel Slater and who gives a crap about the credit crunch? Chocolate brownie anyone? Mmmmmm.

Saturday, 17 May 2008

These Days

I surprise myself with joy. And feel more joyful at the surprise.

I ebb and flow. Eyes open. Eyes shut.

I move with caution. I move with abandon. I can be reckless without you even noticing.

I no longer ask "Why?" but "Why not?"

I know that I am alive. My heart bursts at the smallest thing.

I create.

I nurture.

I feel.

These days.

This is my belated post for ME/CFS Awareness Day, which was on Monday. I did know, but somehow it didn't happen on the day. So is it better to let it pass, or to post late? The latter, I feel. I've read some moving posts today, and they inspired me to squeeze a few words out myself. Rachelcreative has an archive of posts here

Friday, 16 May 2008

Telly Savalas Digs Birmingham

This had me in tears of laughter. I feel a traitor to the city my father was born in, but take a look at what the BBC has uncovered

I confess I felt a twinge of nostalgia at seeing the concrete monstrosity that was the Bullring market. The church of St Martin's was famous for being blackened by traffic fumes. These days, after a multi-million pound facelift the shopping centre is still a concrete monstrosity, just a 21st century one, but the church is frankly much better for a clean.
The pubs Telly speaks of in the film have largely all gone. The Ship Ashore. The Barrel Organ. The Hummingbird nightclub. The West End Bar. Sinatras. The Pen and Wig. Sticky carpets and linoleum floors have been replaced by bland laminate and chrome. Is Birmingham any richer for this proliferation of chain pubs and themed bars? No. Grubby boozers were where I did my growing up, fuelled by Purple Nasties (a Goth drink containing cider, Pernod and blackcurrant) and Vodka and orange (squash). And how I miss those cesspits.

The thing is, Birmingham was doing alright until it tried to pretend to be anything but ugly. The film says it all. In the glory days of the motor city, it seemed like a good idea to hire Kojak to take a voiceover ride with the city's cops around the maze of Spaghetti Junction and the dangerous underpasses of old. I did smile to myself at the realisation that in the 70s the police were running 'one of the most specialised traffic control units in the world'...because the city was in a stranglehold of its own making. "Birmingham's roads are revolutionary," Telly proclaims. Bloody dangerous more like.

And with that danger came a certain frisson. I could frequently be found as a teenage punk Goth creation staggering about paralytic in dingy underpasses near the shitholes my father would come and pluck me from before midnight. Pumpkin time, I used to call it.

"There's a sophisticated shopping centre over New Street rail terminal," Telly informs the delighted 70s suburbanites ooh just itching to get on the next train to Brum.

With some sticky-on bits of 80s plastic fascia The Pallasades looks so much better than it did in the 70s. And the shops are... well, it's not Knightsbridge as that gruff old henchman off The Apprentice observed this week. The ramp leading up to the shopping centre was where many of us did our courting. "Meet you at McDonald's". "Which one?" (there were three in Birmingham city centre, three! Oh the excitement). "The one on the ramp." It was always the one on the ramp. The one above the public toilet where none of us dared to venture for fear of being raped.

Meanwhile Telly is back in the embrace of 70s optimism: "I walked on the walkways and sat on the seats and admired the spacious traffic-free pedestrian precincts." Telly, if you were walking down Union Street, how come we didn't see you walking the walk? And why do you sound like you're reading from a Marketing Birmingham brochure? Talking the talk more like. Not that they had Marketing Birmingham in those days. Oh no, that horror was to come much later in the 90s, when Birmingham really did lose the plot.

And why? Because this was indeed a city built on the manufacturing industry - Britain's 'motor city'. And with the collapse of industry came the collapse of Birmingham's identity. There is an impressive financial quarter springing up in the district where I used to work. Impressive if you like hemmed in, frenentic and ant-like city striving. Now it's left to focus groups and marketing non-entities to recycle ill-conceived ideas of just how to attract the mythical band of tourists that frankly will never, ever materialise.

Unless you love shopping. In which case the new monstrous carbunkle that is the Bullring is most definitely for you. As Trinny and Susannah recently exclaimed, probably in surprise: "Birmingham! You've got everything!" And in that single, vacuous statement came the realisation that Birmingham, you've got nothing. Not if you are now built on statements like that.

Thursday, 8 May 2008

Quick Post

How do people feel about a book of BADD posts? It can be done with the full involvement of anyone who posted and wants to be part of a book that brings together a truly great event.

There are two main reasons behind this, and I really don't want to let it fizzle out. The main one is that I know I for one would pick up a book more often than search around the web specifically for BADD posts. That's impairment specific to me, and kind of ironic given that much of my support network is online. But I also have this feeling that a book would prove a valuable asset to anyone interested in, researching or working in the disability arena. It could be a personal or professional interest, or both.

The second reason really is impairment specific. I would dearly like to read BADD posts in bed, and feel I cannot be alone (in wanting to read BADD posts in bed that is, not being alone in bed you understand, which actually I very much prefer - more room and an absence of irritating presences, like crumbs and...oh, you know, other irritating presences).

So, to recap. I think embarking on a book is a big but shared excitement and anyone who feels they can help could offer to help with proofreading and editing. A small team would be great as we could work out how many posts are involved and perhaps in the first instance divide them up. Then we'd bring them all together again and see what we've got. There's 164 comments over at Diary of a Goldfish, which gives a fair idea of the scale of BADD this year.

Update: Crucial information I left out: The vehicle for producing the book would be which is a self-publishing site where you buy books at the cost of production plus postage. We'd submit posts once we'd got them all together and ready, and the book would be produced very quickly. That's the easy bit.

So I wonder whether Goldfish, when she is less wiped out than at present, would be willing to invite people to say "I'm in" over at hers. I don't feel I can do it here as I'm only really here to waffle on about how enthused I feel about getting a book off the ground. And I'm happy to keep waffling because I really want to help get this going. And Goldfish, if you remain wiped out for quite some time, all that's needed is just the initial "Who's Interested?" question asking. We can take it from there and a job shared is a job halved after all. Though I'm hoping more than two will be able to look through some posts. Five or ten would be great!

But the first thing to establish is who is interested. Then how many entries we're looking at. Then who is able to help organise the content. End of waffle.

Friday, 2 May 2008

A Little Further And A Tentative Suggestion

I haven't been able to stick to my intention of getting around a lot of Blogging Against Disablism posts in a very little time, but I'm glad that Lady Bracknell and others have done so.

It's great to be able to share the little I have read, but to be honest a huge relief and pleasure to follow my own suggestion and make discoveries via other people's recommendations. This is particularly useful if you don't have the stamina for long internet sessions. I just didn't envisage needing to take up the suggestion myself. Quite why, I don't know given my condition. I was thinking more of Goldfish having to steer everyone around what has become her truly huge baby. See? I'm clearly not with it, suggesting a Goldfish steers people around a huge baby. If someone had told me I'd be typing that, ooh, threeish years ago, I'd have said: "Are you in here too, or just visiting?"

Um. Well, thanks to Her Ladyship who has been whizzing around like a very whizzy thing indeed! These posts jumped out at me today, then I just completely ran out of steam. It's been a no spoons sort of week. At my pace, it'll be a long time before I've read everything but I will keep reading, because it's so heartening and enriching (to pluck just two words out of many I could use to attempt to capture BADD 2008). Here's what I read today:

Chanelle and Tristan on the fight for inclusion

Rudy on dealing with staring

Rachelcreative on invisible disability

A powerful and astute observation about when virtual worlds don't collide, from Veralidaine

Yanub saying "It's everyone else who is weird".

Jemma writing about rejection from employers, and how disability studies should be on the curriculum. Yes, totally!

And Elizabeth, who just blew me away with this

I want a book printed containing every single post. There are two reasons for this. One is that Goldfish's efforts to unite should, I feel, be united in print.

But doesn't that defeat the object of blogging, I hear people cry? No. We've blogged. Now why not take it further? There are some really powerful pieces this year. I'm not saying that blogging isn't enough. But I am saying that there are other platforms for these words. And a book would be just wonderful, in my book anyway. Certainly better than newspapers or magazines.

And if I had such a book, I could read it in bed. This is my reason number two. Oh get a laptop!
I can't. But I want to come back to this day again and again. The very success of this hugely successful event warrants a book, for reference, for everyone. I'm sure many will disagree. But I'd still like a book. Anyone else?

Thursday, 1 May 2008

BADD - A Little Goes a Long Way

Great things are going on over at BADD Here are some of the first posts I have managed to read. There are many more to come over the next few days, and I'm sure the debates will continue around here. Yes, you people have got more than just me thinking.

Wheelchair Dancer is at her finest with a blast at something both ugly and deplorable.

Lady Bracknell's Editor provokes feelings of disquiet and dismay as she demands the minutes stand and be counted...

Dave Hingsburger always makes me think, and this is no exception. I'm still thinking.

Cusp tells the truth of the matter.

David at Growing Up With a Disability writes about not being seen.

Wheelie Catholic gets me thinking about the people who reinforce negative outlooks...

And a late entrant (only because I have to stop now and get some sleep) An Unreliable Witness, being actually quite reliable I find.

I was joined earlier in the evening by my son who became curious at all this computer activity. He read a little then we got on with the bedtime routine. Big issues are usually broached by him with a circumspect, often random question. It's how I know something major is up for discussion. And it was when we were settling down for the night with warm milk that he asked:

"What would you like to be in the Guiness Book of Records for?"
"For speaking the most truths in a lifetime," was my reply.

Then, because he's read some of the posts tonight, and especially liked David's he was asking why for BADD we didn't all write our own newspaper or magazine. He asked this because I used to write for newspapers and magazines.

"Why don't you all get together to be in a newspaper?" he asked.

I didn't tell him about the Guardian (see WCD above). I just didn't have the words for a child where The Guardian is concerned. I did tell him that newspapers house some of the most entrenched disablists out there. And why would we as free-thinking disabled bloggers want to bother seeking recognition or approval from newspapers that send out lies and bad messages about people with disabilities every day? It's the non-disabled readers who have their own prejudices validated over breakfast every morning.

Writing for the press has always seemed cool to my son. Until recently. Now there is a certain amount of conflict. His father still has a cool job. His mother doesn't, but realises she actually never did. I feel privileged through my experience of disability to be able to tell him the truth. To ask him to seek out the truth and reject all the misrepresentation.

He went on to consider other areas where the portrayal of people with disabilities is very important. "Why there aren't more disabled actors like in Tracey Beaker?" he asked. And so we talked about how it would be good to see actors with disabilities playing roles that are non-disability related. Where the disability is not central to the plot.

I hope in future years he will write his own post for BADD. He certainly has a keen grasp on what we're up against for one so young. He is finding his own voice in all of this.

Look Back In Anger

Yes, I am angry. Now what do I do?

I am writing about anger for BADD because I know it’s an emotion people know very well when living with a disability. And when you carry around internalised anger it can be very damaging. This I know myself as I am profoundly damaged, physically and mentally. And if my therapist has his way, anger will prove to be at the root of all my ills, we will talk out my anger and I will be so much better.

Now considering I am struggling with a neurological condition that has left me disabled, I wonder about this desired outcome of his. It is imbued with hope, but is it entirely realistic?

Anger is so common in disability circles. But can it really be said to cause, exacerbate or prolong illness? Certainly if you live in isolation and are starved of human contact, anger can become a problem. It is tied up with stress, unalleviated stress, stress that could be eased by human touch alone. But not everyone has regular hugs. And some of us can be angry in an indiscriminate, irrational way if under too much strain. We can also be angry at society in a very specific ‘social model’ savvy way. We can be angry with family, friends, ourselves even, for getting ill in the first place.

So how do you release anger? Really, I want to know. Without the physical release of exercise all I have is relaxation methods and they serve to deflect rather than expel anger from my body as exercise used to do.

And I say used to because I’ve been angry for a very long time. My anger pre-dates my disability. And some would have it that such large amounts of anger contributed to the weakening of my body to the extent that I became ill. Back on the couch it’s all to do with unreliable parental figures, an unstable wider family, abuse, neglect, my own perceived failings…blah.

So yes, I have a lot of anger. Firstly the boxed and very hurtful memories from my distant past and the more recent disability-related experiences. There’s the lack of comprehension, understanding, time or empathy from fellow human beings. The total shambles that was my medical care for a long time. Then the breakdown of my ten-year relationship due to an utter denial (on both sides for a while) of what was happening to my body and mind. Now I’m moving into acceptance. He still just cannot comprehend. A bloody great stair lift, installed yesterday at my home, is irrefutable evidence that I am indeed disabled.

And people up at school have got used to me on a scooter. I have got used to me on a scooter. But the woman I barely know who today decided to share her experience of a devastating but temporary brain illness caused the anger to surface yet again. She told me just how poorly she’d been and I really was shocked and sympathetic. Then she ended with a breezy “Well, everyone says I’m back to my old self now, which is what I wanted.” And I was left trundling off on my scooter muttering how glad I was for her, with her bright and breezy “Stay positive” ringing in my ears. Like if I stay positive I too will be cured. She didn't mean to leave me smarting. It was my reaction. She meant well.

I want to stay positive. And I work very hard to ensure that both my son and I tackle the things that make me angry and him confused. But I don’t want to be consumed by anger. So I think it needs to be channelled. To go where it is needed. Into campaigning for better disability awareness in schools – something I feel very strongly about. Into examining how the perceived failings of family and friends, ex-partners and in-laws perhaps need a reappraisal. Was it their fault they all went into denial? That denial turned into rejection? That rejection worsened my anger? That my anger made me even less approachable?

Where does it all stop? Or perhaps, where does it all start?

Monday, 28 April 2008

Vivid Green

Is it me or is everything a lot greener this year? I hear that one of the joys of withdrawing from benzos is that you get colours back. It's like there's a gradual notching up of the colour and contrast settings in my brain. Brilliant!

There are no photos to go with this observation as I was out unexpectedly for a walk along a canal towpath and didn't have my camera. Even if I had I feel I would need to have spent some time in Paintshop to achieve the level of greens my eyes were seeing :-)

How the hell did I get anywhere near a canal towpath from landlocked Brum? Well, apart from it having more canals than Venice it was my Mum's birthday. I made it out to the pub for a meal and as it was so quiet and trouble-free (just how I like meals out) I had enough energy to walk by the canal for a few mins. It was a joy. There was a bloke painting his 70 foot longboat. I asked him if he lived on it and he said yes, for about two years. I told him he looked well for his new life, and he remarked that though in many ways it was harder he was happier.

Good on him. In other news, we have frogspawn. Much excitement. Some will be transferred to a tank indoors so my son gets to see the whole cycle before we release them into our new pond...which is yet to be dug and no sign of the digger but oh well. Hasn't stopped me watching my gardening DVDs and planning, even if it takes forever.