Tuesday, 30 September 2008

Know What I Mean?

I was at school during the 1960s and 70s, an era of education that held that such formalities as grammar were restrictive when it came to creativity. I am therefore of a generation who can express myself freely but that no one can understand because we never learnt about punctuation, syntax, conjugation, adjectival modification or even spelling. As a result I've spent years struggling to get the ideas in my head down on to paper in a way that other people can understand.

I mention this because a number of you obviously share my mystification regarding formal grammar since I've had a number of comments and emails regarding Matty's homework assignment conjugating regular and irregular verbs. The reality, for most of us who learnt English in childhood, is that we do such things without thinking, thank God. It's rare for most of us to get confused about regular and irregular verbs. When was the last time you forgot that the past tense of the regular verb 'walk` is 'walked`, or that the past tense of the irregular verb 'swim' is 'swam`?

The English language is the most amazing tool for communicating great subtlety of meaning and is the only language that requires books of synonyms such as Roget's Thesaurus. It is also a language easy to get confused over. As Bill Bryson points out -

English is full of booby traps for the unwary foreigner. Any language where the unassuming word fly signifies an annoying insect, a means of travel, and a critical part of a gentleman's apparel is clearly asking to be mangled.

It's a wonder any of us manage to master it to some extent or another. Knowing a bit of basic grammar can only help. Which reminds me of a favourite joke.

Teacher: Tell me two pro nouns.
Child: Who? Me?

Monday, 29 September 2008

An Alarming Night

Just in case you think that my life is all fun fun fun, you might enjoy hearing about last night. Every night since everything went pear shaped a couple of weeks a go (see A Series Of Unfortunate Events) two carers have come each night to help me get to bed. Every night that is except last night. At 9.00 pm I reluctantly started to watch Poirot, knowing that Kalepo and Godfrey would arrive long before the murder was committed, let alone before Poirot's little grey cells could unmask the killer. The murder came and went, no carers. Alibis were established, still no carers. Motives were revealed, still a severe lack of carers. Suspects were gathered together and alibis were discredited, carers still absent. The killer unmasked, justice achieved, no carers. It's now 11.00pm and Poirot-like Polly and I deduce that the carers aren't coming. Polly then does the job of two men and gets me to bed.

I surrender myself in to the arms of Morpheus and have an uninterrupted and blissful nights sleep. Or alternatively the BiPap alarm goes off just as I drift away. And then it goes off again. And again and again through out the night. Oh, and to make things perfect my air mattress slowly deflates until I'm lying on the metal bed frame.

Today a series of engineers have arrived to repair and replace things. The air mattress pump has been replaced and the BiPap's electronic log examined. It turns out the alarm only went off 269 times during the night so I was obviously making a fuss about nothing but they replaced it anyway. Care managers and district nurses have been contacted, berated and informed of needs. Polly and I have made our way through the day in a sleep addled haze.

I've got to go now, Matty is doing his homework and wants to know the difference between regular and irregular verbs when using the third person plural. He's 8 for crying out loud! Shouldn't he be colouring in pictures and trying not to cross the lines?

Sunday, 28 September 2008

Now We're Cooking

Just a very quick post tonight. The boys have both been away on sleepovers. It has been wondrous quiet. Polly has used the time to cook a vegetable Dansak for 80 people, in preparation for her birthday party in a couple of weeks time. She's also made Channa Bhajee and Dall for 80 as well so I hope everyone comes or guess what I'll be having for tea until Christmas next year.

Oh, and I've realised why I'm not sleeping so well. My air mattress is slowly deflating during the night. I'm ending up lying on a metal bed frame which seems to defeat the point of the hugely expensive equipment meant to facilitate a decent (bed sore free) night. Also the alarm keeps going off on the BiPap whenever I pull the duvet up near my face because it thinks I'm suffocating. If it keeps doing it Polly says she'll give it a reason to go off. Sweet dreams.

Thursday, 25 September 2008

In The Post

Polly and I are back from our anniversary lunch. We went to The Post Restaurant in Banstead, Surrey. It is a converted post office, all white walls and abstract art, owned by 'TV Chef' Tony Tobin. Polly had baked haloumi cheese on a mixed salad with lemon oil and balsamic dressing, followed by smoked haddock risotto. I had spaghettini pasta with tiger prawns, crab, chilli, ginger and garlic, followed by Steak and Guinness pie served with fresh seasonal vegetables, creamy mashed potato and gravy. We were too full up to contemplate a dessert.

I would love to be able to relate a hilarious and wrath causing tale of poor access and uncivil staff, but unfortunately the restaurant has ramped access and a large level dining area. The staff were completely unfazed by the wheelchair. They even offered, unbidden, to supply a drinking straw with my orange juice. Perfect? Well yes, except that I managed to inhale a flake of crab and spent the meal desperately trying not to cough. So romantic.

Thank God she loves me.

Wednesday, 24 September 2008

15 And Counting

Tomorrow is Polly and my 15th wedding anniversary. I'm fairly sure now if we were to split no one would expect us to give them their wedding present back. Not that we are planning to split, we are very happy together despite the ever shifting ground on which our lives are played out on. In fact, a side from the recent down turn in the Muscular Dystrophy stakes with all its complicating factors, Polly and I are entering yet another new era. Both our children are in full time education. For the first time in over eight years our home is a child free zone between 9.00am and 3.30pm. Yesterday we found ourselves with time to have a conversation. A real grown up chat. And it wasn't even last thing at night when we were both exhausted.

We've booked to go to a very nice restaurant for lunch tomorrow and yes, I have remembered to buy an anniversary present. All things being equal, I'm greatly looking forward to the next 15 years. And since all things won't be equal I'm so glad I've got Polly to share my life with.

Friday, 19 September 2008

A Series Of Unfortunate Events

I enjoy writing this blog, it keeps me entertained and apparently one or two of you as well. It does, however, present me with a problem. How much detail should I go into when discussing the ups and downs of my disability? Of the hundreds of you who will read this I only know in the real world a handful of you. The vast majority of you will only ever know me through this blog and the miracle of cyberspace and the picture I paint of myself is the one you are stuck with. My sunny nature, sweet disposition and fabulous good looks are something you have to take on trust. Unfortunately (for me) some of you really do know me. You may be one of my family, taking the occasional peek to check I'm not libelling you, or may be an ancient and decrepit friend from childhood who with rhumy eyes seek desperately for glimpses of lost youth and the hope of an immortality of sorts by mention on these electronic pages. (See you soon guys.) Equally you may be someone from my youth, with hopefully fond memories of teenage dalliance or sweet college days who read this blog out of affection and to provoke remembrance of when we were young, carefree and with the future laid out before us with it's tangle of paths not taken. Or you are someone I meet at the school gate, drink coffee with and go out with to the cinema or the occasional quiz night. The question is: how much do I want you to know? And equally importantly: how much do you want to know?

As the more astute among you will have realised I've been going through a difficult time recently. One of the reasons I started this blogging business was because back in April I realised that the FSH Muscular Dystrophy that affects me was starting one of its periodic stages of decline. Slings and hoists have been introduced into my life, afternoon sessions on the BiPap are now necessary, uninterrupted nights sleep are a thing of the past. But these things, though wearing, are bareable and in some ways even improve the quality of life. There are other aspects that are just plain miserable though, with no redeeming properties whatsoever.

Yesterday was the straw that broke the dromedaries spine. I'll keep the details vague, but it involved bathrooms and no time for hoists, humiliation and misery. It was the culmination of a series of horrible occurrences that pushed both Polly and me to the brink. At 3.15pm we called the doctor and at 6.10pm Dr Toosy arrived for a house call. There is no magic bullet but I have the feeling that a ball has started rolling down a hill of badly mixed metaphors and I have no idea where it will come to rest. Something needs to happen because if it doesn't I don't where I'll end up. In some ways it's a relief that things have come to a head. There is a kind of peace that comes with admitting you can't carry on as before, even though you have no clear idea what you can do about it. All I can suggest is that you keep reading and I keep writing. Wish me luck.

Tuesday, 16 September 2008

I'm Okay Really

Don't panic! I'm okay. I don't know, you have a bit of a moan and suddenly you're inundated with emails, comments and visits from concerned friends. Thank you for your concern, I appreciate it but I really am all right. I am not suicidally depressed, just a bit fed up. I've pulled myself together and given myself a strict talking to and agreed with myself to put it all behind me and look on the bright side whilst counting my blessings and turning that frown upside down. Is everybody happy? You bet your life we are.

Okay, on with life. This week S ((or Sam as we shall now call him since I omitted to change his name in the Me in a Magazine post.) (We'll come back to that.) ) (Help, I think I'm lacking in parenthesis control.) (I'll start the sentence again.) This week Sam started big school. He is in the reception class and wears a uniform and feels very grown up. For this week he only does mornings and lunchtime but from next week he goes full time and confidently expects to be elected head-boy by the end of Friday. When Polly took him on his first morning she asked him if he wanted her to walk him to his classroom. He didn't. She watched him trot across the playground and join the line for his class. There was no fuss and no tears – at least until he was out of sight. Then Polly admits she got a little emotional.

Until now I have called Sam S and Matthew M. Why? And why change now? The internet is a fabulous thing, but as we are continually reminded, a potentially dangerous one as well, especially for children. When I first started this blog I wasn't sure what direction it would take. Maybe I would be the 'Deep Throat` of disability issues, blowing the lid on blue badge abuse and black market spare wheelchair parts. I had visions of irate disabled fraudsters trying to track me down and silence me with a crutch in the back. Maybe they would use the children to get to me. But they could only do that if they could identify them. Ha ha! You see my cunning plan to thwart these fiends? In the end I decided to play it safe and hide my undercover work and concentrate on the less dangerous day to day stuff like whinging about my aches and pains. So you see there is no point trying to use my children against me, they know nothing.

Thanks for reading and for caring.

Sunday, 14 September 2008

Rough Times

Sometimes life is rubbish. I won't go into detail but it involves a reoccurrence of the cough and temperature, the side effects of yet more antibiotics, interrupted nights, wrenched muscles and ill temper. Sorry if you have had the misfortune to know me over the last few days, particularly if you happen to live with me. If anyone knows how to stop the world I'd like to get off for a little while. I need a rest and so do my family and friends.

Monday, 8 September 2008

A Pain In The Chest

There is little more unsettling for a man in his 40s than a pain in the chest, particularly the left side of the chest and down the left arm. I know it is unsettling because I have just had such an experience. On Friday I became aware of an ever increasing ache down my side and I have to admit I was getting a tad nervous. I casually mentioned it to Polly who immediately rang for an ambulance – Oh no she didn't, I forgot, she rolled her eyes and reminded me that a few months a go I'd had an ECG and that my heart was determined to be the fittest thing about me. “Besides,” she added, “you never get ill on a Monday morning, it's always bloody Friday night when casualty is shot full of drunks and getting someone to look after the boys is virtually impossible.”

“You don't care,” I muttered.

Polly spent the next 40 minutes listing in exacting detail the many many ways in which she cares for me. Once we'd passed helping me go to the loo, cutting my toe nails and practically dying during the birth of my second son, she sailed on with reminding me of the nights she'd sat by my bed in Intensive Care and the times she moved my shoulder, leg or head in the middle of the night. “And. . . and. . . I married you!” I said I was sorry.

I spent the night in some degree of pain (physical not emotional) and tried to work out what was happening. I realised it wasn't my heart, unless I had been been grossly misinformed during biology classes at school, and the heart was actually located outside of the ribcage. The pain felt muscular and was most acute when I moved my arm in certain ways. And then I remembered. That morning when I was being hoisted from the bed to the wheelchair I had partially slipped out of the sling. At the time I had felt a sharp jolt of pain in my left knee as my weight was suddenly transferred to that joint and I had been distracted from any other damage done. I must have wrenched one or more of the muscles on the left of my chest.

Saturday was miserable as every time I moved my left arm I was incapacitated by pain all down my side. Every now and then Polly would say something along the lines of “And I cooked you a roast chicken last Sunday even though I'm a vegetarian!” It was a long long day.

Sunday morning dawned at last. Polly mentioned that she was also the one who drove me everywhere. Kalepo and Godfrey got me into the wheelchair and helped me in the bathroom where during getting washed one of them moved my arm in such a way that something went clunk. Not click – clunk. The pain suddenly eased. Not a lot but enough to give me hope. It still hurt but the sudden intense sharp pains were better. As I left the bathroom I heard Polly call out “I wonder who cares enough about you to do all your dirty laundry?”

Now it's Monday and I'm taking slightly fewer painkillers. It still feels as if a particularly vicious bison has kicked me under one arm but I think I'll feel better sometime soon. . . when is Christmas? Polly seems to have forgiven me (Lord knows she's had enough practice) but still occasionally drops in an “Oh and I care enough to. . .” into a conversation.

I'm going to have some tea now. And yes, Polly's cooked it.

Friday, 5 September 2008

Me in a Magazine

In the post this morning came a magazine called TargetMD, the Muscular Dystrophy Campaign magazine that is 'leading the fight against muscle disease'. I mention this because for reasons best known to themselves they have a story about me, well more specifically, about me and this blog in this issue. It makes up part of a longer article about using the internet, making online friends and social networking. The other two people featured have utilised the power of the world wide web to gather online signatures to support MD campaign`s Building on the Foundations petition and to organise and promote a fundraising gig called Rockability. I'm the more lightweight contributor, since I only write an occasionally humorous blog about myself. On the off-chance that you are not in a position to nip out and pick up a copy of TargetMD I reproduce my section of the article.

In Touch and Online

Internet sites such as Facebook and MySpace have revolutionised the way we communicate, fundraise and campaign. Three Muscular Dystrophy Campaign supporters tell us what they've achieved by going online.

"People in 17 countries read my blog"

Writer and performer Stephen Deal began his online diary, or "blog", in March this year, charting the ups and downs of living with FSH muscular dystrophy. He lives in Surrey with his wife Polly and their two children, Matthew, eight, and Samuel, four.

"I've been a writer and performer of comic sketches for more than 20 years. Previously, I've run a theatre company, named Stripes, and contributed material to books and TV and radio shows. But in the past three years, the progress of my FSH has meant I've found it increasingly hard to use a computer keyboard. Then earlier this year, I bought a tablet PC that allows me to write directly on the screen and automatically turns my scrawl into type. For the first time in years I was able to write fluently again and I was so excited I decided to start a blog. Before, I was commissioned to write about subjects by other people, but at last I can write for fun about what interests me. In the past I've been embarrassed about people calling me 'an inspiration' simply because I have a disability, hence the tongue-in-cheek title of my blog, 'How to be an Inspiration'.

"The primary purpose of the blog is entertainment but it also lets me vent my frustrations and gives me a space to talk about friends and family, saying things that might otherwise go unsaid. I try to add entries every couple of days, depending on what's occurred. So far my most popular post has been, 'You are not taking your disability seriously if…' The answers are things like, 'You have go-faster stripes on your wheelchair' and 'You use your artificial leg as a wine-cooler'. I've always found that people take on board the difficult stuff if it's talked about in an amusing way. I have no illusions that my little blog will change anything but if it makes a few people smile and gives them pause for thought, I'm happy.

"When I started writing the blog it was for myself and an imaginary anonymous audience. I had no idea who, if anyone, would read it. I mentioned it to a few friends but soon found I was getting emails and comments from complete strangers. 'How to be an Inspiration' appears on Google blogger and Disaboom, an American disability website. As far as I can tell, I have around 500 regular readers and about the same again who pop in to read it once or twice each month. Of those, I reckon I know only 30 or so personally. The UK and America are the main sources of readers, but I get readers from at least 17 countries, including India, Pakistan, Brazil and Sweden. I'm not a great one for 'virtual' friendships but I am in fairly regular contact with a few people via my blog, especially in America.

"Writing the blog has put me in touch with a world I barely knew existed – that of disability blogging. I feel plugged in to a vast network of people with a huge range of disabilities and an often perplexing range of attitudes and views. Many of the blogs are very worthy and intense but in among them are some with a lighter touch and fantastic humour.

'Lots of people have asked if I will adapt the material for a book, which is something for the future if I can find a publisher that is interested. And when I last performed I used passages from the blog as part of my act. I'm acutely aware that my condition is constantly changing so I want to get as much done as I can. Basically, I'll carry on writing 'How to be an Inspiration' for as long as I can get my thoughts into type."

Find Stephen's blog at www.howtobeaninspiration.blogspot.com

Wednesday, 3 September 2008

Some Things Awfully Nice

It’s been a long week and once again I’m sorry for the lack of recent posts. On Saturday we had a 40th birthday picnic in the local park for a friend of Polly. And then on Sunday we had another party, this time for Aunt Megan who was 70 this week.

Megan’s party took place at my brother’s house in Southfields, south London, one of those terraced houses that cost £800 originally but now sells for £450,000 give or take a Victorian fireplace surround or two. The house has a split-level ground floor with a lovely kitchen/diner down a flight of steps. Being a loving brother with two wheelchair bound siblings he has spent a small fortune designing and having made a portable ramp that can cope with the dogleg on the way down.

The party was a great event and friends and family turned out to celebrate. Polly had made a birthday cake made out of 70 chocolate and lemon cup cakes, beautifully presented on a three-tier cake stand decorated with flowers. There was an extensive buffet and plenty of wine and champagne. I enjoyed myself immensely and the boys were thrilled to be loaned digital cameras and asked to be official photographers.

The Cake (photo by 4 yr old S)

Every now and again something unusually nice and surprising happens. On Monday we took the boys to Legoland, Winsor. (No that’s not the nice and surprising thing – we usually go at least once during the summer.) The boys love Legoland and I prefer it to most of the other theme parks in the southeast because the rides appeal particularly to the under 12s. It is however very busy and expensive during peak times such as school holidays and Scrooge like as I am, I begrudge paying the exorbitant entry fees and then spending most of the day queuing 45 minutes at a time for a chance to watch Polly and the boys whiz around a track on a plastic brick-built dragon for 90 seconds. But still, it was the last week of their holiday and they had been good all summer and… well and, sometimes you get pleasure from seeing your children’s excitement and delight at a surprise treat.

We arrived to find cars queuing the entire length of the access road and realised that the park would be extremely busy today. We were aiming to meet up with a friend and her children at midday which seemed an increasingly unlikely happening. Fortunately Legoland has a substantial disabled car parking area. Unfortunately the substantial disabled car parking area was full. We circled the car park several times while I glared at people who seemed to leap from their cars and do handstands and cartwheels before remembering to limp slightly towards the park entrance. (Okay, perhaps I'm being uncharitable but could all those people really be disabled?) Eventually we pulled up behind a car from which a wheelchair was being unloaded. We weren't in a designated parking bay but since at least 50 other cars weren't either we decided to risk it. I took the boys to stand in the entry queue while Polly started chatting to the people unloading their wheelchair, making sure our van wasn't blocking them in any way.

The boys and I joined one of the seven or so lengthy queues to get into the park. It was already 12 o'clock and I was about to reach for my phone to call Anna and say we would be late meeting up with her when I looked up to see her standing one place ahead of us in the same queue. Once we'd had the “What are the odds on that happening” conversation she explained that they were parked in an over-overflow car park so distant she felt it was probably in another county. At that moment Polly arrived grinning like a Cheshire cat and clutching something in her hand.

At full price it costs a fortune to get in to Legoland. A family of 4, 2 children and 2 adults would set you back £122 ($240). Fortunately you can usually pick up a voucher from a magazine or supermarket product that will enable one child to go free. Also, with a proven disabled type person a registered carer can go for free. This brings the price down for our family to a little more reasonable £61 ($120).

Polly gleefully held up 4 shiny yellow tickets. “Look what I've got! Those people in the car in front of us when we parked gave them to me.” “Why?” I asked not unreasonably and with my innate suspicion of 'free' gifts. It turned out that Polly, who can make life long friends with people whilst waiting to cross the road, had been chatting to these nice people about wheelchairs and parking and what have you. In the course of the conversation she offered them a discount voucher she had spare, but the family declined explaining that they were staying at a hotel on an all inclusive deal where as part of the package they'd been given an extra days set of tickets that they couldn't use because they had to travel home tomorrow. Then in a spirit of 'wheelchair users united' they gave Polly the spare tickets. “Here”, they said, “have an ice cream on us.”

We had a lovely time, with the children going on rides, building things and watching shows. The weather was lovely and even the queuing didn't stress me out because we weren't wasting our hard earned pennies on having paid to be there. Result.

So, if you are one of the very nice family who gave us your extra tickets in the overcrowded disabled car park at Legoland on Monday then thank you very much. I hope your random act of kindness is returned to you 10 fold.