Thursday, February 26, 2009

Dear Samuel,

Reading about Ivan has reminded me of how lucky I was to meet you. It's been five years now and I know your Mum still misses you every moment of every day. I wasn't privileged enough to meet you until near the end of your life. A life which touched any it came into contact with, lighting them with love and deepening with understanding.

You were a beautiful, healthy baby boy, born with no sign of the incredible life you'd come to lead. When you were six weeks old you fell ill. What initially appeared to be the kind of childhood illness my generation has forgotten ever existed, rapidly became showed itself to be more serious. There was deep snow that year, and despite increasingly frantic phone calls from your mother the doctor refused to come out to you, instead he chastised her for being an over anxious new mum. Even now, when she's having a bad day your Mum blames herself for not having dug through the drifted snow to get to the car and take you to hospital herself. You were seizing by then though, and vomiting so violently and constantly she fought for hours to keep you upright and breathing. Just you, her and your three year old brother.

Eventually when your grandmother phoned the doctors they agreed to send someone out. By then you were so very ill the roads were closed and a police escort provided to take you to a specialist children's hospital. There they battled and saved your life but hours without sufficient oxygen permanently damaged your brain. No-one complained back then so the doctor who'd refused to see you was quietly sent away and nothing more ever said.

After that life was irrevocably changed. Benefits and care packages were almost unheard of back then, so your Mum and Dad just got on with it. Even when both your grandparents fell ill and your Mum had to nurse them. Even when your Dad got cancer. Even when your Mum found she had cancer too. At the same time as your Dad. They just got through it. They'd learned from an expert.

When I met you you were already dying. In terrible pain you endured thousands of medical procedures throughout your life. No matter how painful the procedure you had to go through, without fail you would tell the doctors and nurses you were sorry. And ask for a kiss to make it better. You always got your kisses.

You changed the world Sam. Your Mum was so appalled by the way the medical profession treated people with intellectual disabilities that she somehow found the energy to force through changes. You were far too busy making people laugh to worry about that though, you had a chortle so infectious it would catch people outdoors and complete strangers would find themselves joining in. Many a Christmas dinner was had with an extra place laid for Mr Blobby, you so loved big, bright inflatable toys. There was even a blow up alien on your coffin. The chapel was too small for everyone to get inside so people spilled out the doors, filling the air with laughter as we all sang 'Always look on the bright side of life'

You did exactly that. You'd be nearly 50 now and none of us who met you will ever forget that no matter what you had to put up with kisses always made it better.


Wednesday, February 25, 2009

RIP

Ivan Cameron. 08/04/2002-25/02/2009

I hope the world will always be able to remember you as the little boy who helped improve the lives of all disabled people.

Monday, February 23, 2009

Monday Musings

A 5 year old girl with cerebral palsy is not entitled to an NHS powerwheelchair
"Nothing ever happens, nothing happens at all.
The needle returns to the start of the song and we all sing along like before"

Del Amitri, Nothing ever happens

"One armed presenter is scaring children, parents tell the BBC."

"Out of touch, out of reach yeah
You could try to get closer to me"

Def Leppard, Hysteria


Tuesday, February 17, 2009

Monday, February 16, 2009

Do as you would be done by

He was smiling as he came up behind me stopped in the middle of an aisle where I was temporarily distracted from running over people's feet and crashing into shelves by the B&Q employee directing me outside to the building yard. He started to laugh and told me I had the face to get away with anything. I've heard that kind of thing before, but it seems age confers a certain freedom to make such statements to much younger women in a friendly rather than sleazy way. All I could do was laugh. And hit a shelving unit with the mobility scooter I'd been lucky enough to stealwait for another customer to return. It was fun...but frankly I've had more powerful vibrators. I didn't share that insight at the time though.

After a few more pleasantries the gentleman asked me what I was shopping for and if he could assist me in any way. I was after a paving slab of some sort to use as a hearthstone for the fire I've recently picked up 2nd hand on ebay so initially I demurred as moving paving stones are heavy things and he wasn't the youngest of men. He insisted though and I was ever so grateful when we got outside to the building yard and found it barren of employees.

Chatting about what I wanted the stone for and what he was purchasing in B&Q as we looked at stones I felt I should make a choice quickly and let him get on with his day. He had time to spare though and insisted on carefully showing me each paving stone so that I could make my choice, and when I chose the particular type of stone he meticulously sorted through them all to make sure I had one that was both beautiful and with the least faults.

Finally I made a choice I was happy with and the gentleman asked how I was going to get it to the check out. He found a flatbed trolley nearby and insisted on lifting the stone for me and helping me to the checkout with it. We chatted companionably as we headed back into the store, and passing the cafe I offered to buy him a coffee to thank him for all his help. He refused, insisting that he was both too old and too old fashioned to ever let a young lady buy him a drink but I could tell by the twinkle in his eye that he was pleased to have been asked.

Once at the checkout, despite all the time we spent selecting the most appropriate piece of slate the sales assistant noticed a chip and took 20% off the price, unfortunately the offer didn't extend to the gentleman's purchases...though I did ask!

Concerned about leaving me with the heavy stone the man continued to help and insisted on lifting it safely into my car for me, and extracting a promise that I wouldn't even consider trying to lift it out at the other end myself. He took time to position it safely on the back seat, the boot being full of wheelchair, and after my telling him just how much I appreciated his help he took his purchases to his car.

I didn't get his name, but he made my day. I think he was lonely so I hope I made his too. Oh, and I've kept my promise, so, for now the slate is still in the back of my car.

Friday, February 13, 2009

A moment in time

These days we're all so busy, busy, busy that even close friends or family can take weeks to schedule a time when all parties are able to see each other. In amongst all that rushing around to meet appointments, targets, deadlines it's all too easy to focus so closely on our own lives that we forget to see anyone else's.

Since I was allocated my landline phone number I've been receiving lots of wrong numbers. I was distinctly unimpressed to be woken up early on Saturday morning by the phone, I couldn't get to it in time, didn't recognise the number but it still did a good job of preventing me going back to sleep. So,
at first when I heard the quavering voice on the end of the phone my heart sank. I'd only been home about 10 minutes, I was tired, hungry and in fact so engrossed in something that I missed the first call she made.

The second time I got to the phone in time. She was already a bit confused was Auntie Betsy, she wanted to speak to her nephew Dave, was quite sure she'd phoned his number. This number. My number. With one eye on the clock I assured her this wasn't Dave's phone number, said goodbye and thought no more of it. Until she rang again just a moment later. More confused, and I could hear both the distress and shame in her voice as she told me she was in her 80's. That she'd once had a very responsible job you know...she just didn't know how she could manage to muddle up a few numbers so easily.

Once again I explained she had the wrong number, but this time tried to find out who she was looking for. She was calling from all the way across the country she said, would I know her? I explained that was unlikely, but that we'd get this sorted and I'd try the phone book to find her nephew.

Of course they were ex directory.

I live in a small area though and in some small ways community spirit is alive and well. So, it turned out I knew her nephew. Not well, he's a friend of a friend of a friend. But I knew enough to recognise who Aunty Betsy was looking for, and figured if I couldn't spare a few moments to help a confused old lady then what did that say about me as a human being.

Fortunately Aunty Betsy had the number for her nephew's mother, or so she said. I wasn't quite sure because that would've meant it was either her sister or sister-in-law (I think!) but still, I figured it was worth giving it a go. Otherwise I knew it would be possible to track down her nephew but it would mean multiple phone calls to different people to try and track down a number for the friend, to get the number of the friend of the friend.

The number was correct, and turned out to be for nephew Dave, with no mention of his mother. We said our hello's and I explained about Aunty Betsy being a bit puddled. Dave said he'd give her a call and apologised repeatedly. My phone number was previously Dave's phone number and Aunty Betsy must've just got them mixed up.

I called Aunty Betsy after I'd spoken to Dave to let her know that was the right phone number and to reassure her.

Later, alone in bed the thought of a confused old lady phoning and phoning a number she wasn't too sure about to try and speak to her nephew and wondering why he didn't answer her brought me to tears. What possible use are all our shiny gadgets and adrenaline packed lives if we can't find just a few moments in our days for everyone's Aunty Betsy?

Saturday, February 07, 2009

Pay Peanuts, Get Monkeys

Well, unless you're the government. In that case disabled people are much cheaper.

It's always good to see the government being consistent in their approach. What's that you say? Welfare Reform Act? Disabled people being kicked off benefitsassisted into a willing employment market led by...the government themselves. I'm off to apply for a job in the Home Office right away!

Wednesday, February 04, 2009

Diagnosis, what diagnosis?

Early mornings and a bendy body do not mix so I was not thrilled to realise I'd forgotten to change my rheumatology appointment and so had to be at the hospital for 8.50am this morning. I was even less happy when I arrived to find that someone in their infinite wisdom had allocated the most distant clinic to a group of patients likely to have mobility issues. Tripping over a nurse on my way in was all my fault though!

A few days after I moved I went to Leeds for my appointment with the extra special bendy people Professor so I'd already been able to discuss most of the issues I had concerns about whilst I was there, and any not dealt with were because I forgot about them. Despite taking a list. It was the usual mix of the bizarre and sublime as it always is when seeing 'The Prof'. Lying on an examination couch in one's knickers with legs wrapped around the back of your head might be considered strange in some circles but is absolutely normal in bendy circles. As are discussions about 'smarties' Ssshh, don't talk too loudly, even in private as that means cannabis which seems to be much more dangerous of late. Couldn't have anything to do with £80 on the spot fines could it?

So, today's appointment was routine which considering I was barely awake was a good thing. I saw the same consultant as last time which is not always the case, especially when it's a consultant you might want to see again! In a typical medical and therefore non government approved fashion 'The Prof' and the locum consultant (LC) had been at a meeting together and had a chat there about my condition. LC had previously expressed concern at the severity of my symptoms and seemed relieved to hear that 'The Prof' had (once again) told me that I'm one of the most severely hypermobile people they've ever seen...an honour which quite frankly I'd happily give away to one of the (many) very mildly affected people who moan about how terrible the pain is from the one dislocation they might have experienced 3 years ago along with the ability to dislocate 3 times in as many seconds. What...no takers? Anyone...anyone...Bueller? The funny thing is that no matter how many times I'm told this kind of thing I just can't see it in myself. The default thought process of 'there's nothing wrong, you're just lazy etc' resulting from being mislabelled as an attention seeking hypochondriac always kicks in and I wonder if that will ever change.

Whilst I was waiting to see LC two second year medical students sat down near me. They were talking about how they hoped they'd be together in clinic and generally about their own health. The girls got their wish and were able to observe my appointment. LC asked me not to tell the students what condition I had and instructed them to examine my hands. They had to be told (by both LC and the nurse) to make sure they used alcohol gel before they touched me. Examining a hand each it was immediately obvious they were both out of their depth. Whilst LC was reading the letter I'd brought with me from 'The Prof' the students were looking more and more bewildered. I told one not to be distracted by the swelling she could feel around some of my finger joints but it didn't seem to help. Eventually I asked them to think about what rheumatological conditions there were and try to rule them out one by one. Unfortunately they didn't know of any conditions apart from arthritis and lupus, neither of which were they confident of the symptoms anyway. One of the students did manage to say she thought my fingers were 'loose' and moved very easily, but even after I'd told them to look at the other joints too they still were unsure. Whilst I wouldn't expect them to know about Ehlers Danlos Syndrome I was horrified at the low level of their knowledge. LC instructed them to look at my eyes and describe what they saw. After much leading, including my putting a piece of white paper up next to my eye for comparison the best they could come up with was that the whites of my eyes looked a bit grey. LC asked them if they'd done paediatrics yet and to tell him what condition caused blue sclerae in children. Shockingly they didn't recognise the word sclerae, and nor had they ever heard of Ostegenesis Imperfecta. One girl was rather well endowed, and as she leant over me to examine my hand I was treated to a view of her impressive assets and black lacey bra all the way down to her tummy. I predict the rate of heart attacks going through the roof and greatly increased morale amongst certain patient groups when she gets to the wards!

I don't know what kind of knowledge level second year medical students are expected to have, so if any of the medical professionals who read here would like to comment that would be very helpful. I was left with the impression that not only was their medical knowledge lacking, but that their general knowledge was very weak and they seemed to have no idea about how to go about the process of making a diagnosis/examining a patient. They were lovely girls, and didn't seem to lack intelligence so if this is a result of the changes to medial education made in recent years then the government have acheived their aimsthe future of medical provision in the UK does not look good.