Hannah's Blog

Well, blog fans, what a day! Richard and I went to London yesterday, to the giant demonstration and lobby of parliament for better disabled access to public buildings, better pay for carers, and various other crip things. (I should explain for newcomers that I am 31, married to lovely Rick, and completely paralysed from the chin down, and dependent on a ventilator to breathe for me, via a tube attached to a tracheostomy, as a result of a mystery illness which has been slowly paralysing me since I was 16. Thankfully, my consultant is sure that the disease has now run its course. She explained that it attacks the peripheral nerves from the spinal cord, and, since facial and speech muscles are supplied direct from the brain, they won't be affected. I hope she's right!)

We got up early (well, Rick got up, and then got me up) and, after Rick had washed me, dressed me in my yellow dress and put my sandals on my feet, lifted me into my power chair (I'm as light as a feather, thanks to the extreme atrophy of my limbs), put my head in position in the shaped head-rest, put the velcro strap across my forehead to keep it there, and swung my chin-control into position, and fed me in the kitchen (I'm what you might call high-maintenance), we headed out to the van, where Rick lowered the rear and I rolled on to it.

On the station platform, Two young women approached. They were both pretty, and looked like sisters. The younger one, tall, plump and dark-haired like the older one, and probably 21 or 22, was holding her sister's right arm with her left hand, her right arm flailing around randomly. She was walking very slowly towards us, her legs going all over the place, her torso writhing, and her head bent over onto her left shoulder, from where she made repeated but ineffectual efforts to lift it. She was making involuntary noises and constantly grimacing. Her older sister was pushing a folded manual wheelchair with her left hand.

When they reached us, the younger one, after some grimaces and ermmmm and ahh noises, said

"Ha-ha-hi! I'm Luu -ermmmmm -Luuuu - ermmmmmm ermmmmm LuAH! LuAH! Lucy, annnnnd annnnd this is MMMMMMM - MMMMMMMM - my ERM - sister emmmmm emmmmmm AH! AH! Jane. Are you GAGAGA going to the AH! AH! duhdemo?"

I confirmed that we were.

Jane took over.

"Do you want to go in the chair now?"

"Yeah"

replied Lucy. Jane helped her sit on the bench. Rick offered his help, and unfolded the chair and put the brake on, then helped jane lift Lucy into it. As Lucy sat there, writhing, grimacing, and making odd noises, Jane, who is 27, explained that Lucy, who is 21, had had steadily worsening dystonia since she was 12, and had practically lost all control over her body, as we could see. Lucy's contortions and involuntary noises were gradually subsiding. Jane explained that when Lucy wasn't trying to make voluntary movements, her involuntary ones subsided a lot.

The train arrived. A station employee put a metal ramp in place for us, and Rick guided my chair up it, using the joystick on the back, then Jane pushed Lucy on. We chatted as the train made its way South, Lucy doing her best to join in. She is obviously a friendly, chatty girl by nature, who must find her extreme difficulty speaking very frustrating. poor girl. Her speech got more and more difficult, and her head more firmly jammed into her left shoulder, her legs twisting round each other, her hands gradually rising to her shoulders, tightly clenched into fists.

"EMMMMMMM! MMMMMM!"

she said, loudly and urgently,

"All right, just a minute"

said Jane, She reached into her shoulder bag and pulled out a bottle of tablets and a water bottle. She put the tablets, one after the other, in Lucy's mouth, after Lucy had succeeded in opening it, and followed each with some water, much of which Lucy spluttered out.

"Anti-spasmodics"

Jane said.

"Lucy will now have a window of a few minutes during which she'll be almost normal, before her voluntary movements are knocked out as well. Hi!"

(this last to Lucy, who was starting to relax, and had succeeded in lifting her head almost upright, and was smiling.)

"That's errr nice, emmm won't emmm last long, though. Thanks!"

said Lucy.

The train drew in to Watford Junction, and many people got on, including two men in their 40s, one in a wheelchair, who saw our little group, and came over and asked if we were going to the demonstration. We confirmed that we were, and they introduced themselves as Andy and Adrian. They were a gay couple. Andy had been paraplegic since he was 23, due to a car accident. Lucy said

"Hi, I'm Lucy. This is my sisphhhh thphhhh ppppppp..."

Her head flopped forward.

"Don't worry"

said Jane,

"she's just had anti-spasmodics. They always do this, She'll be back with us in 10 minutes or so."

I started crying a bit as the train pulled out of Watford. Rick noticed, turned my chair round, and as discreetly as possible wiped my tears away and gave me a kiss. The others, being British, all furiously looked the other way. We had originally planned to meet up with our friends Sue and Dave at Watford Junction, then continue on together to the demo, but two months ago Sue, who was severely physically and mentally disabled as a result of a devastating stroke in her 20s, was rushed into hospital with a serious chest infection. While there, she had a heart attack. They did their best, but she didn't make it. We went to Sue's funeral two weeks ago.

When we arrived at Euston, Andy and Adrian said goodbye, as they had arranged to meet friends. As the four of us rolled and walked down the platform, Lucy tying her legs and arms in knots and making involuntary noises, some of them quite loud, many other passengers glanced in our direction, and some of them turned to companions and said something quietly. I heard a middle-aged woman say

"poor girls - how awful!"

to her husband.

We got a taxi to Parliament Square. The driver, a beautiful Asian woman in her 40s, put the ramp in place for me, and Lucy stood up with Jane's support, and writhed and jerked her way into the cab while Rick folded up her wheelchair. My chair was positioned facing backwards, and Lucy was facing me. I watched her writhing, grimacing and making noises, and wondered which of us was worst off. Her head was once more jammed onto her left shoulder, and her constant muscle spasms must be quite painful, I thought. I asked her where in Berkhamsted she lived. She replied

"I MMMMMMMMMM AH! AH! live with er m-my p-parAH! AH! p-PAAA-parents."

Jane said that their parents had had their house adapted, with handrails, a wheelchair stairlift, and other modifications.

"By the CAAAA canal"

added Lucy.

We arrived in Parliament Square, and saw the largest number of disabled people I'd ever seen in one place: wheelchairs, walking sticks and white canes as far as the eye could see. Various disabled celebrities spoke, including my hero, Fiona Huskisson, better known as 'Midnight Blake', the young-adult fiction author, who has been paralysed from the neck down since she was 13. I met her a couple of years ago. In front of me and to my left, just within my field of vision (I can't turn my head, of course), I could see a grotesquely deformed woman. She was very short, partly as a result of being extremely hunchbacked, with a huge hump on her right shoulder. Her left arm was atrophied, and hung down limply, and her left leg was encased in a brace. Her right hand was holding the arm of an able-bodied man. He spoke to her by signing on her right hand. She was deaf and blind as well - and, as I discovered later when I saw her face, remarkably ugly. They were about 30.

Eventually, it was all over, and we made our way back to Euston. Lucy and I had a private, crip-to-crip chat. She got a bit tearful, and said she hated her life, and was scared about the future, as her condition was getting worse. I longed to be able to give her a hug, but had to make do with some comforting platitudes.

We parted at the station, having exchanged email addresses, and an hour ago, I got an email from Lucy:

"Hi"

(she wrote),

"itwad greag to c u yestrdsy. Looknf forwardto seeibg u again soon. I'm tyoing tgison a giamt keybosd. I cam doitslowky with my right habd if I concentrate. Lofe u."

I burst into tears. Poor, poor Lucy - so young, so pretty, so full of life, so loveable, so terribly afflicted.

Oh well - see you again soon, blog fans!