Brothers And Sister

Facioscapulohumeral muscular dystrophy (FSH) is a condition that affects both men and women equally. The chances of inheriting it from an affected parent is a straight 50/50. I know this from reading the literature and from personal experience. My father had the condition (misdiagnosed as Polio as a child) and of his 4 children, 2 of us inherited it. (See post Up Up And Away for more about FSH and inheritance.) There's me, Stephen, the oldest, with the condition. Then my brother, Simon, with out the condition. Next comes Mark, with FSH, followed by little sister, Helena, without it. Gregor Mendel would have been thrilled.

Growing up in a family where fully half the members are disabled seemed, at the time, perfectly normal. You can hardly play the 'I'm disabled, pity me' card if 50% of the family are in the same boat. We were all expected to behave as well as each other and there was no sense of favouritism or lowering of expectations. As I've grown older I've come to appreciate just how stable my family was. I have no wish to idealise the situation but if you had to grow up with a disability then ours was the family to do it in. At some point I know I'll write about my mother and father but just for now, let's concentrate on my siblings.

I am inordinately proud of my brothers and sister. They endured the same uninspiring education as I did and have each gone on to be very successful in their fields. Hartcliffe Comprehensive school in the 1970s was not renown as a beacon of academic excellence. I know for a fact that at least until recently we were the only family of four children who attended the school to all have graduated university, let alone with a total of 2 Doctorates, a Masters degree and a lowly Bachelors degree (mine). Proud? You bet I am.

Simon (PhD in Computing) is a something complicated to do with computers that involves him flying all over the world, He is married to the lovely Jaspreet, and has two sons. Mark (PhD in Disability) has carved out a niche in the disability employment sector. He serves on DEAC (Disability Employment Advisory Committee) for the government. He also travels all over to lecture. My baby sister, Helena (MA in Personnel Management) is head of Human Resources in Asia for an oil company (Hess). She lives in Kuala Lumpur with her husband, Andrew and their two sons. Not bad for a group of kids from Hartcliffe.

I'm sure that we each have different memories and perspectives of growing up with Muscular Dystrophy, how it affected and shaped us as a family. There were fund-raising days, the occasional sadness of a friend or acquaintance passing away, and the annual MD Christmas parties

Ah, the Muscular Dystrophy Christmas party. An annual get together held in a prefabricated hall where we sat at trestle tables and ate party food, played bingo and watched, joy of joys, Woody Woodpecker cartoons. Someone would sing Tom Jones songs and eventually, just as the tension became unbearable, the sound of jingle bells would be heard and a gruffly west country “ho ho ho” heralded the arrival of no less a personage than Father Christmas.

This is where my memories and those of my brother Simon's differ. As Father Christmas doled out presents we waited in breathless anticipation as names were called out. He maintains that Mark and I were given colour televisions while he got a balloon. The truth, I seem to remember, is that I always seemed to get a Soccer album, Score 1973 or something, while Simon got a toy of some kind. (Mark and I only ever got one television and that was from the Young Farmers. It was very embarrassing.)

If for some reason you would like to read a little more about my teenage years, then have a look at Rock God's post My Tone Deaf Mate Won TWO Ivor Novella Awards. Some of the story is actually true.

That Healing Touch

If school days are meant to be the happiest of your life then my life was going to be pretty miserable. Don't think for a minute that it was all terrible; for the most part it was just monumentally forgettable. Fortunately school was not the only thing going on in my life. My friend Paul (Rock God) was known universally as 'The Preacher's kid' on account of his father's occupation. Paul took the name to be derogatory but in actual fact it was merely observational. His father, Graham Loader was, and is, a widely respected west country evangelist, who would on occasion take the school assembly and was generally accepted to be infinitely preferable to the usual bland, platitudinous rubbish we were normally fobbed off with.

Graham Loader was at that time a leader of a little chapel set in the dark heart of the Hartcliffe housing estate and he, with others, organised for a youth organisation called the Covenanter's to use the school gym on a Friday evening. Paul dragged me a long. In a Health and Safety nightmare we cavorted on gym equipment and trampolines, played bone-jarring British Bulldog and clambered up and dangled from wall-mounted climbing bars. We were 13 and indestructible. The only condition on partaking of this Friday night mayhem was attendance at a bible study type thing on a Sunday morning at the Hartcliffe Christian Fellowship. Fair enough, there was nothing on the telly.

Through out my teenage years I became immersed in the life of that little fellowship. And while, looking back, I might now take issue with elements of the somewhat black and white theology, it in many ways shaped the person I became. I remember it with great fondness. It gave me my first taste of public speaking, it gave me responsibilities, friends, and ultimately the basis of a career.

HCF was a world away from school. Different friends and different problems. My disability was still an issue though. I had to reconcile the reality of Muscular Dystrophy with never ending tales of healing, where faith led to a physical cure and that no sickness, disability or condition was too great for God to deal with. As the muscle in my forearm weakened and the tendons tightened causing my right hand to claw, I would lie awake at night praying that my fingers would unfurl. When they didn't it was obvious I didn't believe hard enough, or pray the right way. It is to their credit that no one at the church took me aside to discuss my lack of faith, although it must have been tempting for them to speculate on the massive nature of my sin that so caused God to hold back his healing touch. They needn't have bothered. Though I tried to lead the perfect life, pure and holy, I was after all a hormonally normal teenage boy. Just sitting next to Julie Trick in an English lesson was reason enough to require hours of repentance.

The search for healing would be a recurrent theme through out my teens and early twenties and would lead to my somewhat ambiguous relationship with the Almighty. But I can tell you that the kindness, wisdom and friendship of people like Graham Loader helped make what could have been traumatic years easier in many ways. The Preacher's Kid should be proud.

I feel Fine(ish)

Throughout my teens my disability was more an annoyance than a source of pain. It slowed me down rather than stopping me doing things. There were many occasions when it inconvenienced me or caused me some level of distress but largely it was something to be worked around rather than an immovable barrier to getting on with life.

Muscular Dystrophy does not in itself hurt. The gradual break down of the muscles is painless but as the muscles weaken the remaining ones are forced to compensate and that can hurt. I say this with some feeling as I have recently pulled the muscles around my left shoulder whilst performing that inherently dangerous procedure, flushing the lavatory, and the excruciating pain is beginning to impact on my usually sunny nature. But back in my teens pain was not the issue, fatigue was.

I went to a school on the edge of Bristol, Hartcliffe Comprehensive, half a mile from my home. In 1972, when I arrived, aged 11, Hartcliffe was reckoned to be the 3^rd or 4^th largest school in the country with more than 2,400 pupils. The school consisted of two huge buildings, a quarter of a mile apart on a 5 acre site. The two buildings were labelled with staggering imagination East and West. It was perfectly possible to have a French lesson on G floor, the top of the East building, follow by an English lesson on C floor, the top of the West building. A generous 5 minutes was allowed for transition between lessons. You can imagine the scene as the first bell rang and nearly two and a half thousand pupils raced to their next classroom. You can also imagine some vindictive teachers over running their lesson whilst others demanded to start theirs bang on time. To avoid total chaos one-way systems were introduced meaning that sometimes you couldn't even take the shortest route. The process was repeated up to 5 times a day.

There are many tales I can (and no doubt will) tell about my school days but here I am writing about how it felt to have MD in such a situation. Over the 7 years of my secondary education my condition deteriorated relatively little compared to what was to come later. During the early years I could still run (albeit slowly) and had to partake in PE lessons, including Rugby. I felt very self-conscious, aware of my puny physique, and went to some lengths to avoid communal showers. A good game of rugby for me was one from which I left the field completely mud free (difficult in an English winter) and without having broken sweat (easy in an English winter). I felt different but I didn't feel excluded. I had good friends.

I wasn't particularly bullied at school. This was for a number of reasons, not least the aforementioned friends. One of our group was a fellow called 'Birdy', who came from a huge and somewhat notorious clan. Upsetting Birdy by bullying his friends could prove catastrophic to a would-be thug. Think Nelson Mudd with a west-country accent, more charm and about 10. . . er. . . 'free-spirited` brothers. I also cultivated an air of mediocrity. Standing out in such an environment was rarely a good idea and I was already different enough. Over the years I developed a distinctive leg flicking gait and an inward curvature of the spine. As my facial muscles weakened my face became less expressive, which many teachers took to be a blankness and lack of comprehension, and I used this to fade into the background. I very much doubt that any of my teachers remembered me two years after I left the school.

By the time 1 reached the 6^th form walking to and from school was an exhausting challenge each day. Getting an education was a fairly low priority by that time. I remember having a crisis of confidence; wondering what I was going to do next; what, literally, was going to become of me. I put off applying to Universities and half-heartedly looked for a job. I could feel myself at a tipping point. Up until now my life had had an approximation of normality. I was different, but not markedly so. I knew things were going to change, and not for the better. The reality check came when I applied for the Disabled Living Allowance (or whatever it was called back then) mobility constituent. I'd previously been turned down but now a panel of doctors labelled officially 'disabled'. They also provided a written assessment. I was barely 18 and was told I'd be in a wheelchair before I was 25. They were out by at least 2 years. I was left wondering whether life was worth bothering with.

Next time – Finding a direction.

How Does It Feel?

Imagine having a severe disability, severe enough to require a wheelchair, and yet not be able to tell anyone what it feels like because of another unrelated disability. This is the scenario presented to me by fellow blogger One Sick Mother, whose friends son suffers from both Muscular Dystrophy and Autism. OSM wrote -

Stephen,

The main reason I follow your blog - apart from the quality of the writing - is because a real-life friend of mine has a 13yo son with Autism and MD (I don't know which type). His name is *****

Recently, my friend complained that there is little information out there that she could find on MD (lots of stuff on Autism). Yes she can find the medical information and the all the impartial technical stuff. But how does MD *feel*? She doesn't know that and ***** cannot really tell her. He can talk, but like many Auties, he cannot express his feelings properly. She doesn't know if he is hurting or just tired.

So I was wondering if you would be able to point us to some ... inside information on MD, which may help prepare C to prepare *****?

It's just a thought. Thanks in advance for any help you can offer.

One Sick Mother

I replied -

Hi OSM

I hope you are feeling better. (see I read your blog too).

Eek! Autism and MD. That's a combination I've never come across before. The British Muscular Dystrophy Campaign site is pretty good. I'm pressing for a blog section so people can share their personal experience.

Would you mind if I address the questions you raise on my blog? Can I quote your message or would you rather I not mention your friend directly?

Remember that MD is an umbrella term for a huge range of conditions. My experience may be completely different to *****'s.

Let me know what you think.

Look after yourself,

Stephen

OSM replied -

Thanks for the prompt reply.

I am feeling a good deal better thanks. Funny how a cold can knock the stuffing out of a person who performs their own chiropractic adjustments. I suppose it is all relative.

I know Autism and MD is quite a combination. Actually it was because of the Autism that they found the MD pretty early. They were going to one of these cure-Autism-or-go-broke-trying-with-the-cunning-use-of-quackery doctors when blood tests showed some abnormalities.

Considering all they deal with, they are doing well. They just got *****'s first wheelchair, which I know was a blow for them. I will point her to that site. Like many Americans she does not tend to look outside the States much for stuff.

Yes I understand that there is a vast range under the term MD. Kind of like Autism or PDD, I expect, which covers everything from Rainman to Einstein. I will be seeing C in a week or so and I can ask more specific questions then about types and subtypes etc.

I don't mind you addressing the question directly, I think it is relevant to a lot more than just this case, just please don't mention ****'s name.

Thanks again,

OSM

I share this exchange of emails by way of explanation for the next post wherein I will discuss what it feels like to have MD.

On another issue altogether...

Polly was walking the boys to school the other day and Sam was moaning, “Why do we have to walk?” Polly gave her stock reply. “We're saving the Polar Bears' houses from melting.” Matty, whose class last week had had a visit from a meteorologist joined in to explain. “Cars create gasses that cause climate change and that's melting the snow around the North Pole where Polar Bears live.” Polly was pleased that he had taken the lesson on board. “The world would be so much better without cars,” Matty continued. Then added thoughtfully, “or greenhouses”.

The wheelchair V The Walker

On the post Grit In The Shoe Of Life I listed three of the petty annoyances of my disability. Here is another one, let's call it The Walking Wanderers.

Imagine the scene; you are wheeling along the High Street pavement, thirty feet ahead of you are an elderly couple, laden with Christmas shopping, walking up towards Woolworths and a whole bundle of 3 for 2 offers. They walk slowly and you in the wheelchair are closing fast since the chair moves at the equivalent of a brisk walking pace. You line up to overtake on the inside, next to Superdrug, when with feet to go, and for no apparent reason, the elderly couple stop dead. You come to a juddering halt yourself and miss smashing in to their brittle boned back of the legs with less than a foot to spare. You release a breath in a hiss of relief and prepare to negotiate around the now stationary obstacles. But then, one of the couple (usually the man for some reason), without looking, takes a step backwards and onto your metal foot-plates. He stumbles, partially falling into your lap, and glares at you, assuming you have run into him. Once disentangled he limps away on the arm of his spouse muttering about not letting 'them' out unaccompanied.

Some time later, with rolls of wrapping paper strapped to the back of the wheelchair and a box containing special offer bubble bath on your lap, you are heading back down the High Street towards Marks and Spencer's to buy a woolly hat when the same elderly couple step out of WH Smith's directly into your path. You just manage to swerve around them, nearly taking out a woman and her baby-buggy, and head off away from the couple, hearing her saying to her husband something about 'liabilities'.

The final encounter comes as you head back towards the car-park. You spot the by now familiar anorak and beige mac a little further down the street, and mindful of their erratic wanderings you slow to match their speed. But their pace grows ever slower as they discuss the merits of Vicks Synex spray over menthol lozenges, and eventually, as you realise that Christmas will be long over before you reach the car at this ever creeping pace you determine to overtake them, albeit at a wide margin. It is at this point, as you prepare to manoeuvre around them, that they speed up a little and begin to zigzag back and forth before you. As you try to anticipate a gap in which to ease passed they begin to vary their speed, randomly quickening and slowing, meandering left and right. You draw level and try to squeeze by. The old lady, with out looking or giving the slightest hint of intention, suddenly changes direction and bumps into you side on. She glares at you. “I do wish you would watch where you are going, young man!” she says. Then she pauses, taking in the wheelchair, and asks. “Where's your Mummy or Daddy?”

Tips for people who can walk.

1. Walk in a straight line. Don't zigzag- It's not clever and it's not funny.

2. Don't stop abruptly. Slow to a halt. 1f you can't do this then at least wear warning lights on your back.

3. Maintain a constant pace. Speeding up and slowing down randomly is just plain mean. Leave variable speed to those of us with electric motors and adjustable power settings.

4. Remember you share pavement (sidewalk) with other users. It is not a lavatory for your dogs, nor is it the ideal place to leave gum. Wheels are harder to clean than shoes.

5. Stopping at the narrowest point of the pavement (eg between a bin and bollard, tree or lamppost) for a conversation is selfish. Don't do it. Ever.

6. Waving a cigarette around at waist height while you walk is tantamount to poking me in the eye with it. Don't be upset if I throw take-away coffee over it. Or you.

And don't get me started on umbrellas.

Lies, Damn Lies And Statistics

My cyber-friend, Blake, at I Hate Stairs, tells me he has had a problem posting a comment here at How To Be An Inspiration. As far as I can tell all is well this end but knowing my expertise with computers and internet type things I will be the last to know if my blog has contracted a problem. I would be most grateful if a few of you reading this would leave a comment so I can see if the problem is wide spread. If you do have a problem please drop me a line at – h2bai*stephendeal.org (replace the * with a @ to help foil those nasty spammers). Thanks Blake for bringing it to my attention, but I hope you don't mind if I wish the problem was yours because you, at least, have a fighting chance of knowing how to fix it. I've found that weeping and banging the computer with a shoe has very little maintenance or restorative properties. Meanwhile, check out Blake's wheelchair stalking post. Be afraid, very afraid.

Over at Disaboom, where I also post these posts, cherylberyl has asked how I came up with the figures I did for the Disaboom posts when I wrote I'm 100 Today! Okay. Well, Disaboom, although a marvellous resource, is pretty useless when it comes to tracking your blog's statistics so a degree of extrapolation is required. Google Analytics provides a smorgasbord of statistics for my How To Be An Inspiration site, so I know how many visitors I have per day and per month. I also know if it is the same demented soul visiting time and time again or lots of discerning individuals visiting once or twice. So, at Disaboom I total up the number of visits per post for the last month (not the last 30 posts) and divide by 30. This gives me an average number of visitors per day. Google Analytics reveals that I have, for example, 900 visits from 300 unique visitors over the last month on How To Be An Inspiration, so assuming Disaboom blog readers behave in much the same way as Google blog readers (and I realise that's a major assumption) then if I have had, say, 1500 visits to my Disaboom posts over the last 30 days then it is likely that 1/3 are unique visitors. Therefore it is not unreasonable to say I have a regular Disaboom readership of 500 individuals in this example. Yes, I know there are a lot of assumptions but until Disaboom stop treating every post as an unique blog then it's the best I can do. Tim, if you are reading this, maybe you can help.

And finally, a few months a go I joined Facebook, which once you get past the countless invitations to hug, grow flowers, drink beer and all manner of cyber-silliness, has proven to be great fun, putting me back in touch with several people from my dim and distant past. (Hi Brian, Tony, Jonathon etc.) I have been trying to get this blog to show up on my Facebook page but it seems to require large numbers of people prepared to concede that I write this before it will let me, and even more people prepared to admit they read it before any meaningful statistics can be gathered. If you are on Facebook, and have not already done so, then please, be my 'friend'. I'll be yours. Look for Stephen Deal and this photo.

Thank you for reading.

Drowning At The Dentist

You learn something new everyday. Today I learned that you can drown at the dentist.

My dentist is one of those rare creatures, an NSH dentist. He is based in the grounds of a now eerily deserted hospital that is slowly being converted to 'luxury' family homes. Once a bustling mix of health and community service buildings, residential homes, wards, mental health facilities, nurseries and all manner of disparate NHS bits and bobs, set in several acres of tree dotted green fields, the site is now littered with sealed up buildings and groups of yellow helmeted surveyors measuring up the space for development. Here and there the odd service survives; the wheelchair service occupies a building and my dentist another. The dental surgery was once part of a complex that included a GP surgery and a physiotherapy department, but they have been relocated and so the dentist and his assistant occupy a huge building all by themselves. This will be my last visit to the site before the practice moves to another location and the echoing building is razed to the ground to make way for 2 or 3 bedroom executive residences.

When I arrived the waiting room was empty so I was denied the chance to read three year old magazines and was instead ushered straight in. I positioned myself adjacent to the dentist's chair and tilted my wheelchair back. The dentist, an Asian gentleman with reassuringly spectacular white teeth, positioned the light and said, “let's have a look.” A few minutes of probing later and he declared that all was well apart from a little tartar that he would now remove.

Armed with the dental equivalent of a pressure hose he proceeded to blast the offending calculus from my teeth while his assistant wielded a mini vacuum cleaner to suck away the debris and excess water. And therein lay the problem. Suck as she might, water trickled to the back of my throat as I lay back in my chair. Whereas normally I would have swallowed the excess water I found that in my prone position I couldn't. And when I breathed I found that I was breathing in the water. Not wanting to make a fuss I endured this for as long as I could, before having a coughing fit and shaking the various implements from my overflowing mouth.

We tried again but it was no good. Each time I ended up coughing and gagging on water, being looked down upon by an anxious dentist. Eventually we resorted to old fashioned scraping. Slightly more painful but better than drowning. Less embarrassing too.

Home Alone - ish

Polly has been away for a girly weekend with her friends from the school so I've been left to fend for myself. I say by myself but I mean by myself and with a little help from my friends. By myself apart from Elly who came on Friday evening to look after the boys while I was at the cinema (Max Payne – don't bother) and slept over 'just in case'. Apart from Kalapo and Godfrey who came each evening and morning to put me in and get me out of bed. Oh, and the two district nurses who turned up on Saturday and Sunday afternoon to help me go to the loo. And Jason, a paramedic and friend who came later on in the day to help me go again. Then there was Anna and PJ who came over on Saturday late afternoon. Anna took the boys for a sleepover and PJ stayed and we had a take-away together. Oh, and Karen, who popped in with her son Tristan and joined us. PJ slept over 'just in case'. But apart from them, I was all alone, all weekend. So lonely.

I'm 100 Today!

Welcome to my 100^th post.

That's 100 little billets-doux from me to you. If you have read the whole lot then you've read well over 50,000 words.

I've had a little rummage around the blogosphere to see how this blog compares to others of a similar ilk. I don't just mean other disability themed blogs but others in the whole 'online journals and personal sites` category as defined by the clever people at Google Analytics. Apparently such sites get an average of just over 1 visit per day. This site averages 27.4 at How To Be An Inspiration and 45.8 at Disaboom, so on average, I am delighted to report, 67.2 come and at least glance at what's been written every day. It's harder to work out if it is the same demented person is obsessively visiting time and time again or lots of different people. Google Analytics helps again and tells me that (at least) 250 separate individuals visit How To Be An Inspiration and I can extrapolate that (approximately) another 500 at Disaboom. So, if you are reading this you may well be one of some 750 regular readers. Okay, it's not world beating but I'm pleased. If you are not a regular reader then you probably think you've wandered in to a maths lesson. Sorry. I won't mention stats again until the anniversary post next April.

I love writing this blog for a number of reasons. When I was touring with a theatre company a few years ago we regularly attended festivals and youth camps. I think it must have been in the late 80s and we were performing at an international youth camp when one of the organisers approached me and said “you must meet Toni”. Toni turned out to be a young women in a wheelchair. We were introduced and left a lone with each other on a balcony over looking a sea of tents. “Hello,” I said. “Hello,” said Toni. We sat together for ten minutes hardly saying a word to each other. Then Toni said “I hate it when they do this. You're in a wheelchair, I'm in a wheelchair...” “We must be friends!” I finished. As it turned out Toni and I got on fine but the only thing we had in common was that we both used wheelchairs. The truth is I don't have disabled friends. I have a disabled brother and had a disabled father so I'm not against cripples per se, but aside from some acquaintances and the guy who checks the tickets at the cinema, I don't know other disabled people. And quite frankly I was happy with the way things were. After all, if they were all as moany and ill humoured as me, then why bother? But then, back in April I started this blogging business and found myself in touch with the online 'disabled community' and what do you know? There are loads of them out there, the sick, the lame and blind, and not all of them are whining and witless. In fact, quite a few are funny and fun to be in contact with. I've come to genuinely appreciate being part of a community of people who share a lot of the problems, joys and world views that I have. It has been a real bonus to the main reasons I write this material.

I started this blog because I had become aware that my condition, FSH Muscular Dystrophy, was undergoing one of its periodic periods of decline. Movements and transfers were becoming harder and as a result I was pulling muscles and hurting myself' more frequently. I could feel myself withdrawing and pulling inwards. Polly had been encouraging me to start writing again and I'd just bought a new laptop PC with enough processing power to decipher my handwriting scrawl and was keen to try it out. I'm not saying that I was depressed or contemplating my mortality but I was aware that I have led an atypical life for a severely disabled person. I'm married with children, have worked and travelled, lived independently and come as close to death as it is possible to get but survived. I've met and worked with many interesting people, won awards, been betrayed and been loved. Come to think of it I'm not sure anyone, disabled or otherwise, has a typical life, but the fact remains, I have stories to tell; stories I wants my children to know. I'd also like friends and people I know know how much they mean to me. And, of course, I'd like someone to know how bloody irritating life can be in a world full of literal and metaphorical steps when you are sat in a wheelchair. Who knows? If enough of us keep pointing out the peculiarities and iniquities someone may listen. And in the meantime there's plenty to laugh at.

Thank you for reading. I'm now aiming at 1,000 regular readers so, please, spread the word. And yes, emails and comments mean a lot, so please stay in touch. I suppose I would still write this if no one was reading but it wouldn't as much fun. And if you are writing your own blog please keep writing. Where else can I nick ideas from? I call this blog How To Be An Inspiration as a personal joke at myself, but in truth, it's you who inspire me.

On to the next 100.

Grit In The Shoe Of Life

Continuing with the moany old git theme. Disability is rubbish. Let's face it, very very few would decide to opt for it as a lifestyle of choice. Yes, I know that I should accentuate the positive and eliminate the negative and all that, but all in all, I think most of us would agree that we'd forego the advantages of a blue badge in exchange for dropping the dis in disability. However, despite the assurances of Falwell. Bakker, Swaggart, Oral Roberts, et al, faith and an open heart are no match for genetics or a severed spinal cord, and we have to live with the cards we've been dealt. Moaning does no one any good. (Long time readers of this blog are now raising eyebrows and wondering where I'm going with this.) So, in complete acceptance that it will make no difference whatsoever, here are 3, non-medical, things that irritate me about my personal situation. All are minor, all are merely the grit in the shoe of life.

Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.

Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.

In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.

Crabby

Oh I'm a moany old git today. I had an appointment at the Royal Brompton Hospital this afternoon, the result of reaching near breaking point a while ago. (See - A Series Of Unfortunate Events) The good Dr Toosy wisely decided to have my current medical situation assessed by the mighty minds of the Brompton and (early next year) some one at Kings. So, today, Polly, Matty (off school with what Sam had last week) and I ground our way through the London traffic, waving at snails as they whizzed by, to Kensington. Parking in the area around the hospital is virtually non-existent, with about 9 disabled parking spaces to share between both of the hospitals main buildings. We found one of the precious bays unoccupied for a nano-second and nipped in, no doubt causing some one with an iffy leg to have to pay at one of mortgage requiring 'normal' parking spaces.

On the way up Matty had been asking about our astrological birth signs. I'd given my stock response, “I'm Pyrex and your mother's Caesarean,” but Polly admitted to being Libra and told him I was Cancer.” “The crab?” “There's no one crabbier,” remarked Polly. Then warming to her theme, “he's so crabby he moves sideways.” The reason Matty was asking about this nonsense was not because we were encouraging his enquiring mind to explore new age mysticism but because it had been mentioned on The Sarah Jane Adventures, a spin-off of Matty's beloved Dr Who.

Anyway. . .

We waited on Lind, a corridor on the top floor, for a doctor to see us. The clinic is always busy, full of people who for the most part make me look like an Olympic athlete. (Mind you, they probably look at me and wouldn't fancy my chances in the 110 metres hurdles.) Eventually, after blood had been taken from my ear-lobe and tested for various gasses, we got to see Consultant Dr Michael Polkey, who is, as all the staff are, very nice. Apparently my blood gasses are fine. . . and that's it really. There is not a lot more they can do. They did, very kindly, offer to take me in for the odd weekend if I need a break. And he was very sympathetic and supportive, prepared to write as many letters as we need writing to any one who we think might be able to help. The trouble is, I can't think of anyone for him to write to. Does anyone know the address of good stem-cell researcher?

The journey home made the journey there feel like Lewis Hamilton's qualifying lap at Monte Carlo. Tortoises and three-toed sloth rush passed us as we crawled home to pick up Sam from where he was being looked after. So, there goes another afternoon of my life I won't get back. Bah humbug.

A Pause

A brief respite from the American saga while I bring you up to date with events here at home. I'm sick again. Not very, thank God, but enough to be irritable and out of sorts. The culprit is Sam again. He has had a cough and has had to be off school all week. To complicate things, Polly has been doing another Clown Doctor training week. She has been coming home with a bizarre mix of tales of dying children and improvised comedy routines. But at least the district nurses turned up this week so I could go to the loo.

I'm taking a course of antibiotics in an attempt to head off a major chest infection. The pills are the size of small tombstones. How come they can shrink a camera, music player and games machine in to a microscopic mobile phone but can't gets a drop of medicine in to anything less than a stick of chalk?

I'll also take this opportunity to point you towards my old friend Paul 'Rock God' Loader's new blog How To Be A Bonafide Rock God. If you've ever wondered what it is like at the very bottom of the music business (think barrel, scrape etc.) this funny, honest and occasionally literate blog is worth a few minutes of your precious time. And if you are a parent of a would be X-Factor contender with dreams of super stardom, point them at this and show them how they'll probably end up. I mock Paul, because frankly I don't know how to do anything else, but this is a guy who actually gets paid to perform and has done so for some 30 years. That's a heck of a long time to gather stories of the reality of rock 'n' roll.

America - Heritage USA

At one time Heritage USA was the third most visited attraction in the States, after Disneyland and Walt Disney World. That was in 1986, now, less than 10 years later, it was fighting a losing battle against becoming a wilderness. 2,300 acres of anti-climax. To give you an idea of the size, you could fit the original Disneyland, UK's Blackpool Pleasure Beach, Six Flags Great America, and Universal Studio's Florida all inside the grounds together, and still have room for a few Wembley stadiums (stadia?) left over.

At myinsistence we had travelled to Fort Mills in South Carolina to visit televangelist Jim Bakker's Christian theme park. I had seen a documentary about it sometime earlier and, admittedly with an eye on satire, was keen to see the place. It had boasted a 501-room Grand Hotel, Main Street Shoppes (sic), the Heritage Village Church, a 400-unit campground, an amphitheater, conference facilities, prayer and counseling services, full TV production studios, Bible and evangelism school, visitor retreat housing, staff and volunteer housing, and the vast Heritage Island Water Park and recreational facilities including tennis, fishing and a petting zoo. At one time the Passion was enacted daily and you could visit the Upper Room.

The water park, which had once been the centre piece of the whole place was now derelict, a mass of pastel coloured concrete. The huge Typhoon water slide, down which it was possible to reach speeds of up to 40 mph, was clearly visible. We found a swimming pool nearby that was still functional and the party I was with had a swim. I was anxious to look around.

We found our way to an indoor shopping street that was lit as if it were a star-lit night. It had the best Christian tat for sale I've ever seen. You could insert pictures of your children meeting a suspiciously European looking Jesus in to an oil painting. There were King James Bibles for your Gameboy and enough Olive wood crosses to build an ark. The fast food restaurant sold Goliath burgers and Moses milkshakes. Fantastic.

I won't go in to the history of Heritage USA, you can find the details on the web easily enough. It is enough to say that its demise was wrapped up in some dubious financial dealing, a sex scandal, and some bitter infighting between various high profile televangelists. All very sad and distinctly 'unchristian'. At the heart of it all was Jimmy and Tammy Faye Bakker's PTL organisation.

So why was I so interested in Heritage USA? Why, aside from a chance to feel pompously superior and to gape at fallen extravagance, had I dragged our party to this now rather sad place? Two words. Kevin's House.

Kevin was a severely disabled teenager who had been adopted by some relative of the Bakker's. Jim and Tammy Faye raised millions of dollars to have a house built for him. Now, the facts are murky and hard to come by even with the internet at my finger tips, but I seem to remember that there was some question as to where all the money went. (Surprised?) But most amazing to me was the rumour that the house had been built all right, but that there was very limited disabled access. I had heard that poor Kevin had to be manhandled up the stairs to his room. I wanted the truth. Kevin, who died a little while after the house was built was regularly wheeled out to ask for money on the PTL television show, uttering the immortal words “they wouldn't ask unless they needed it.”

Well, the house was there. I saw it with my own eyes. But I couldn't gain access. It was closed to the gawping public. I will probably never know now. The house burned down in 2002. Arson was suspected. So, if you know the truth please let me know. Was the house wheelchair friendly? Was it all a fund raising con?

Heritage USA has been broken up into smaller concerns today, I'm told. Tammy Faye died last year and I can't be bothered to find out about Jim Bakker.

Next time – The last plane out of Georgia.

America - Up In Smoke

“... And then the ay-uh moves the product on to the next machine.” We were being addressed by a silver haired old lady wearing glasses. She was a sort of composite granny, sweet and harmless, which was at odds with her day job as a spokesperson for your genuine merchant of death. “If you'd like to follow me, I'll show you the next stage of production.” We crossed the vast factory floor to the next high-tech piece of of machinery. I glanced around, half expecting to see some one in a dinner jacket shooting at a man stroking a long haired, white Persian cat. “You are too late, Mr Bond. We already rule the world.”

We were at the RJ Reynolds cigarette factory outside Winston-Salem, North Carolina. For a centre of evil it had excellent disabled access.

The entrance foyer had a dramatic mural of all things tobacco made entirely from tobacco leaves and a sign saying 'Thank You for Smoking'. All the tour guides were elderly 'granny' type figures because, so local wisdom maintained, rabid anti-smokers were less likely to abuse or assault them. The production area was a vast, cavernous space dotted with automated machinery linked together with tubes of plastic. Two or three people oversaw production, moving between machines on tricycles. Tens of thousands of little death sticks were being made as we stood and watched.

The tobacco industry is despicable on so many levels. From its denial of the harmful effects of their product against all the evidence (the causal relationship between smoking and lung cancer has been known since the early 1950s). Even as late as 1998 (4 years after this story takes place) senior industry executives were saying under oath -

*We don't believe it's ever been established that smoking is the cause of disease."
Murray Walker, Vice-President and Chief Spokesperson for the Tobacco Institute, testifying at the Minnesota trial. (1998)

Or

"I'm unclear in my own mind whether anyone dies of cigarette smoking-related diseases."
Geoffrey Bible, Chairman of Philip Morris at the Minnesota trial. (1998)

As wealthier nations legislate against smoking the industry builds new markets in poorer 3rd world and developing countries. All the while they hide behind 'a freedom of choice' argument. And what do they think of their customers?

An actor promoting RJ Reynolds products asks an RJR executive why he does not smoke. He is told:
“We don’t smoke that s***. We just sell it. We just reserve the right to smoke for the young, the poor, the black and the stupid.” (Cited in, First Tuesday, ITV 1992)

Lovely people. So why were we here, listening to a sweet old lady telling us about the colleges they support and the museums they build? Well frankly, Winston-Salem is tobacco. There doesn't seem to be an awful lot to do that isn't in some way related to the weed. And I have to admit, it was very interesting. There was an exhibition on the history of cigarette advertising, including RJ Reynolds very own Joe Camel, who to American children is said to be as recognisable as Mickey Mouse. (The industry doesn't target young people, of course.) (They said so.) On the way out we were invited to help ourselves to the product. Boxes and boxes of cigarettes were there to be taken. It seemed churlish not to take at least one. Later, I realised that was exactly what they wanted and so I threw them away. (I foiled their cunning plan to get me hooked. Ha ha. One less victim of their fiendish plot for world domination.)

“And then the ay-uh moves the cigarettes on to the next section.” The sweet old lady guided us across to yet another humming, grey machine. “Any questions?” Polly raised her hand politely. “What exactly is an ay-uh?” she asked, looking around for this mysterious transporter. The old lady looked puzzled. “Ay-uh?” “Yes, the ay-uh. The thing that moves the cigarettes around the factory.” The sweet old lady pointed at the pipes linking the machines. “The ay-uh in the tubes. It's compressed.” “Ah,” said Polly in sudden realisation. “Compressed ay-uh.”

You may have got the impression that I'm not very keen on smoking. The fact that it's smelly and lethal has nothing to do with it. It's the unbelievable arrogance of the senior executives who are prepared to lie and lie and lie again to protect their profits that angers me. The sweet old lady was very nice though.

Next time – Heritage USA

America - In Black And White

Our mini-tour took us out of Georgia and into the Carolinas and two of the most bizarre places I have ever been.

But before that, let me tell you about the show we were performing. Show is probably too strong a word for our presentation. It was meant to be informative about Rob Frost's Share Jesus organisation, giving a taste of various aspects of the ministry including the drama productions he was best known for in the UK. Rob would give an overview of Share Jesus and Polly and Kate would punctuate the talk with comedy drama sketches, written by me. I would be wheeled out to tell a few funny anecdotes about working with Rob and the church scene in Britain and all in all it was a pretty slick, fun evening. The highlight however was anything but slick. It was it's excruciating awfulness that made it so brilliant (to me anyway). Rob had brought along a young man called Matt to drive, move boxes and man the ubiquitous bookstall. Matt was, and is, a good friend, with many talents, especially in the field of evangelism. He is not, however, in any way, shape or form, an actor.

Around the time of the tour it was the 200th anniversary of Methodist founder John Wesley's conversion. At the time he wrote a now famous passage in his personal diary.

“In the evening I went very unwillingly to a society in Aldergate Street, where one was reading
Luther’s preface to the Epistle to the Romans. About a quarter before nine, while he was
describing the change which God works through faith in Christ, I felt my heart strangely warmed.
I felt I did trust in Christ, Christ alone for salvation; and an assurance was given me that he had
taken away my sins, even mine, and saved me from the law of sin and death”.

Rob, working on the assumption that Americans love all things Olde Worlde English, persuaded Matt to don a period wig and dress up as John Wesley and then recite the famous passage. I can not adequately communicate how much Matt loathed doing this. The normally articulate young man was reduced to a stammering, word muddled misery. To make matters worse, Matt was fair haired with a complexion to match. The southern sun gave him sunburn, which in combination with flaming embarrassment turned his face into a tomato red. The audiences always gave him an appreciative round of applause, though whether cause they enjoyed the virtually incomprehensible performance or out of pity for his suffering, we'll never know.

The vast majority of our performances took place in Methodist churches. There were a couple of major differences between our familiar British Methodism and Methodism in the deep south of the USA. On one occasion I was doing my bit when I looked up to see, leaning against the door jam, a huge man with a sheriff's star. If you had to cast a Hollywood caricature of a 'good ole boy' southern sheriff you need have looked no further. He wore reflective sunglasses (even though it was dusk) and had a belly hanging well over his belt. Most disconcerting of all was the enormous gun he had attached to the belt. He stood watching me and chewing gum before leaving when he decided I was neither funny nor a threat to national security. I've been in many churches in my time but have never seen anyone armed in one before. Not even in the rougher parts of south London.

The other thing you could not help but notice was the fact that in the churches we visited everyone was white. This seemed at odds with the warm, friendly and, yes, Christian people we met. As the days and churches went by I realised that if a black family had turned up at any event they would have been genuinely and warmly welcomed. I also realized that this would never happen. Coming from a multi-cultural city like London this was, to say the least, odd. I can not stress how nice people were. I presume that had we met a black family they would have been every bit as nice. But we didn't. Not once. There was no sense of segregation, only separation.

So, on to North Carolina and the mystery of Ay-uh.

America - Georgia On My Mind

Continuing the story of our trip to America.

We started our mini-tour in Atlanta, alternating performing in various, mostly Methodist churches, with being tourists. We visited the Coca-Cola museum which was, let us say, tightly themed but great fun. I learned more than I thought possible about a carbonated drink. For example, I learned why Cola is ideally served in a glass full of ice. Not, as I cynically assumed, because the ice displaces the Cola thus using less of the fizzy stuff. No, it's because in the late 19th century when John Pemberton invented it as a patented medicine, refrigeration was a luxury and so ice was a status symbol. Therefore, drinking a glass of syrupy fizz that was clinking full of ice showed the world that you were well-to-do. (I've had that information rattling around for 14 years and this is the first time I've used it. Yay for blogging and the sharing of knowledge.) At the end of the World of Coke tour you got to taste umpteen Cola based drinks which would shoot across the room and fill little cups for you. I'm as fond of a soft drink as anyone but 60 different (or not so different) is about 59 too many. Matt (the wig wearing gopher), managed a sip of just about all of them.

Polly's vegetarianism continued to cause her problems. At our first gig the church had prepared a supper for us and the youth group. It consisted of loads of different types of sandwiches each and every one of them crammed full of meat. There was a tiny bit of decorative garnish on top of one pile. Polly ate it.

That night Polly and I were to stay with one of the youth workers. He was a lovely young man of about 18. A real all-American boy, Jeff was all fired up for Jesus and was an enthusiastic and generous host. He was giving up his self-contained basement bedroom in his parents house for us to use. He drove us through the Georgia countryside until we got to his parent's spacious home and were introduced to them. It was a bit odd to be honest. I was in my mid-30s at the time, about the same age as Jeff's youthful Mom and Pop. Both Polly and I felt very much as if we were Jeff's young friends, and were to be left alone to play with him downstairs.

Jeff also introduced us to his stunningly attractive, blonde girlfriend, Sloane. “Sloane?” I said. “Like the square?” With dazzlingly perfect white teeth, she smiled, blankly. “The square? What square?” “Er. . . Sloane Square. In London. There's a square in London called. . .” “London, England?” “Yes.” “I don't understand. I've never been there.” “It's where the Yuppies come from.” “Yuppies?” The cultural divide yawned wider and wider. Sloane favoured me with polite smile, less dazzling this time, and turned to Jeff. “ I'm tired, Honey. I'll see you in the morning.” She gave him a peck on the cheek and left, giving me a nervous look.

Later, when Polly and I were alone in Jeff's basement bedroom, Polly remarked how trusting his parents were, what with the gorgeous Sloane and effectively a self-contained apartment with it's own entrance, and a large, metal framed, double bed. But then, as we crawled into the bed, we discovered trust was not an issue. The slightest movement caused the bed to squeak loudly, the noise, echoing and being amplified by the concrete walls of the basement. It was probably the most effective form of intimacy deterrent, a kind of audio-contraceptive.

Polly and I spent the night almost not daring to breathe. Especially not in synch.

America - A Land Of Grit

I don't know if you've noticed but the Americans are having an election: on Tuesday they get to make X`s, press buttons, pull levers and hang chads to elect the leader of the free world. It's all very exciting if you enjoy elections, which I happen to do. So, with all the zeal and enthusiasm of someone who's views count for absolutely nothing – Go Obama!

Soon after Polly and I were married we were invited to provide comedy drama sketches for a mini tour of a few of the states with UK Methodist evangelist, Rob Frost. If you have a stereotypical image of an evangelist flying in on Business Class, travelling around in a fleet of Limos and staying in 5 star hotels you are thinking of some one other than Rob. The purpose of the tour was to say thank you to some local supporters, make a few contacts and generally have a good time. The touring party consisted of Rob, his PA Marion, a guy called Matt who was along to lift things and wear a wig (I'll explain later), Polly and Kate who were the actors, and me along for the ride and to make witty and pithy observations on Anglo-American relationships. As far as Polly and I were concerned it was, what we in the biz call, 'a bit of a jolly'.

We left England on a warm, pleasant June afternoon and arrived in Georgia some ten hours later to be hit in the face by a wall of hot air, so full of humidity you didn't so much breathe as drink it. It was about 8.30pm local time but 2.30am for our jet-lagged bodies. We were greeted by some local Methodists who, displaying customary southern hospitality, insisted on taking us out for dinner. We went to a local restaurant and perused the menu which included such exotic things as grits, griddle cakes and black-eyed peas. All the main courses were meat laden platters, steaks, turkey, meat loaf and so on. Wonderful for me. Polly, a vegetarian, on the other hand was a bit disconcerted. Firstly, she, being typically English, ordered Tea. It came, ice cold, in a glass. After puzzling over the menu for a while she asked the waitress, 'call me Annie-Lou, honey', if there was a vegetarian option. This was 14 years ago and things may be different now, but back then, in rural Georgia, vegetarianism was regarded as some kind of Yankee liberal plot against decent America. Annie-Lou struggled for a moment and then suggested Annie-Lou's Georgia grits.

A while later, after some sleep deprived conversation, our meals arrived. I had a genuine American burger with more toppings and cheeses than your average deli. Polly poked hesitantly at her grits, a rather gloopy corn based porridge with bits in it. She tasted it, with one eye on me and the others as we tucked in to our piles of grilled or roasted cow, and tried very hard to look as if it was just what she was hoping it would be. Annie-Lou hovered anxiously, hoping it met with Polly's fine English approval. After a few moments chewing Polly asked what the little bits floating in the vegetarian grits were. They tasted a little bit. . . well, meaty. Annie-Lou was quick to reassure her. “That ain't meat, honey. That's little lumps of bacon fat.” Polly blanched. “Bacon's not meat, honey, it's flavouring.”

It was the start of a wonderful few weeks that included a hurricane, Alcatraz, a Christian theme park, a very squeaky bed and the mystery of Ay-uh. And cats. Lots and lots of cats.