Let's (not) dance

It started during a performance of improvised Japanese contemporary expressive dance. I should explain. What started was my own personal heat wave reminiscent of the great Summer of 76. I was a drought area by 8:30pm. I was on fire. Head to toe. The Japanese contemporary expressive dance thing is more complicated. It was an odd thing to attend and I've probably damaged my children for ever, but attend we did. We came, we saw, we perplexed.

Look, there was a time in my life...I was younger...when (I believe the phrase is) I experimented with mind altering drugs...I was reading a lot of Aldus Huxley, listening to a lot of Pink Floyd and generally discovering things that could make me dance when god alone knows...I hated to dance. It was social phobia overcoming drug therapy with the possibility of a date at the end of the evening. The only trouble was identifying the end of the evening. Anyway, back to the point. This all new MS symptom was a heat rush that was tangibly reminiscent of those heady days. Only it wasn't any fun. It was just a rush of heat with nerve endings exploding and my body heating up from the inside out. A bit like being inside a microwave...although that is, I hasten to add, a guess. Don't try it at home home in order to contradict me...I believe you.

The thing about the Japanese expressive dance thing was that it was more like a mind altering trip than anything I've experienced for 20 years. Particularly when combined with the rush. Dancing across the stage a lady appeared with a large lump of dough attached to her face which she then began to pull apart and throw at the audience. I began to feel a deep seated and uneasy sense of familiarity. A performer that gradually taped herself to a chair with garish red duck tape took me right back to the late 80's. Gradually it all began to blend. MS, LSD, E. It became some weird anagram. I love anagrams. When I've worked it out I'll let you know. Meanwhile I will not dance, expressively or otherwise. It's too dangerous. Thankfully the heat rush subsided after a short intermission. In remission (t).

Can't sleep, won't sleep

Fear of insomnia...that's what keeps me awake at night. I used to sleep so well. Midnight, snoring, nothing could wake me. Phones, alarms, children...once in the land of nod I was there for keeps, well, 8 hours. Yet I was never one for over sleeping. I liked to be up and about in the morning, not idling by the hours til lunchtime. Yes, sleep was an ordered pleasure.

But not so now. It could be the MS. It could be the hamsters. Sometimes it's the hands on fire, sometimes it's the pliers on toes and sometimes it's just...wide awake time. But whatever it is, something wakes me regularly, however tired or fatigued I may be. Whatever time I hit the sack I'm awake sometime between 3 and 4. And there is a whole strange world that goes on between 3 and 4.

The cat for instance, can hear me coming up the stairs (yes, our house is upside down) from three gardens away. She can be through the cat flap and by her food bowl before I've reached the top step. If perchance I decide to turn over and hope sleep returns the cat has other ideas. Yo, Dave! Wake up, Come on, I'm upstairs. Come on Dave. You know you're awake! Stop fooling yourself... All this is said in a wild miaow that sounds like the onset of being possessed in a sequel to the exorcist.

Talking of being possessed...youngest child at 4 in the morning. She sneaks ever so quietly in from her perfectly adequate single bed to make our double over crowded. Then she has the ability simultaneously put her feet in your head, back, face and chest whilst stealing the quilt with a devious slip of the elbow. Whilst we sleep vertically she gradually turns horizontal until I'm reduced to lying on my side, balancing precariously on the outer 3" of the mattress. Enough is enough and I decide to take my chances with the possessed cat.

Now I'm upstairs I may as well do something...I know I'll switch the computer on and get on with the blog...What shall I write about? I know...Fear of insomnia...that's what keeps me awake at night.

One hand clapping

What is the sound of one hand clapping?...so goes the Zen riddle. Of course there is no answer to a Zen riddle, just the pursuit of enlightenment. Somehow, I didn't know for sure, but I suspected, Buddha wouldn't be at the National Indoor Arena today.

'Stick it to MS' reached it's climax and Simon and me headed north to Birmingham at the crack of dawn. Six hundred drummers, twelve hundred hands holding twelve hundred sticks...what's the sound? An effing row to be honest. What's the sound of 600 hundred drummers playing quietly? Now that is a real Zen riddle cos they can't. It doesn't function in brain. Drum? Quiet? Bang, bang, bang...We will, we will rock you, rock you. What's the sound of 600 drummers being asked to take a 5 minute break? Bang, bang, thwack, thump, thump, snaaaareee roll, cymbbbal CRASHHHHHH, runaroundthetoms, runaroundthetoms, double snare hit, splash.

After four hours of a deafening cacophony that would have had John Bonham coming back from the dead to complain that him and Mooney couldn't hear themselves think I became convinced that Multiple Sclerosis wasn't such a bad disease. Surely no illness was worse than this hell.

And then we came to the defining moment. The world record attempt. 600 drummers sticking it to MS. Simon was poised, double bass drum pedal at the ready....My ear plugs were buried deep - a sense of impending doom weighing heavily on me. Bang, bang, crash, smash, bang, bang, crash, smash...Then, imperceptibly it began to happen, out of the mists of hell appeared a rhythm, in time, in tempo, a unison sound, 600 drummers together, playing their hearts out. It's like Riverdance meets the Edinburgh tattoo with the Kodo drummers of Japan joining in. Christ, I'm tapping my feet along and bloody hell, Buddha just appeared. What's the sound of one hand clapping? I don't know but the sound of 600 drummers raising money for MS is really good...and it's most enlightening.

http://news.sky.com/skynews/Home/UK-News/Drumming-Guinness-World-Record-Hundreds-In-Birmingham-Smash-Record-And-Raise-Money-For-Charity/Article/200907215337165?lid=ARTICLE_15337165_DrummingGuinnessWorldRecord:HundredsInBirminghamSmashRecordAndRaiseMoneyForCharity&lpos=searchresults

That was the year that was

And so inexorably the cogs of time have turned until here I am celebrating my anniversary. Not a birthday, not a wedding day, not a 'where were you when Jacko/Diana/Lennon/Elvis died?' (delete as appropriate). But it is a year since my Neurologist, having shown me a selection of lesions in the brain on my MRI scan spoke the immortal words...I think you'd better sit down. I must say that having seen these tiny patches of white in my brain that turned out not to be some careless tippex marks from an over enthusiastic undergraduate doctor, the words It's probably Multiple Sclerosis seemed something of a result...so it's not cancer of the brain? No, it was definitely Multiple Sclerosis. Excellent.

On the way home from hospital the words Multiple Sclerosis seemed to gradually get worse. MS is one of those big illness's that you've heard about since childhood. Of course Neuro had given us the new 21st Century medical mantra...don't google it...which we promptly did...8, 360, 000 results in less than half a second. Multiple Sclerosis is a proper, serious disease. This calls for a cup of tea.

A year later and life has changed beyond all recognition....hang on, no it hasn't. I have injections every other day, but I still go to work every day. I have various pains, aches and numb spots and occasionally I'd rather sit than walk ...but I can still go to the gym. I have some days when I really can't get out of bed but a couple of years ago I had hang-overs that had the same effect. Some times I can't remember things I knew very well a while ago but I'm assured by everyone that my memory has been rubbish since anyone can remember. There are the spasms of course which are generally ignored at home and a bit embarrassing in the pub...but hell, whats a twitch between friends.

Enough of this sitting down, I going to stand up while I can.

Licensed to ill.

It was back to Clinical research for a quarterly check up…bloods, walking, feet tickling, all the usual stuff. It fact it begins to feel like some sort of international torture conspiracy. The French “Allo, Allo” impersonating doctor was not to be found. Instead was a lady doctor from Spain, which is nice that we’re keeping it in the EU. Lady Doctor from Spain didn't fill me with confidence. This excuse must please me she said but this time first that I test do in English. Many times Spanish we do all the time often, but in English never. I have just been reminded by the trial manager that I mustn’t tell this doctor which drug I am taking as it is a “blinded” test. It’s important that her interpretation of results is not influenced. When she says tell me if I push your fingers down or up whilst she manipulates my toes I’m reasonably confident that I could shout Rebif Interferon beta 1a, three times weekly injection at the top of my voice and she’d be none the wiser.

Next it’s on to a new Neurologist, who seems to have got his jobs mixed up. He definitely gives the impression that he’s a suave, sophisticated secret agent working for MI5. NeuroBond, (licensed to interpret an MRI) sweeps into room 0.07. Hi, Its Dave isn’t it? Dave Carey. Any problems? Any side effects? Flu? Sadness? Paranoia? (Or was that just in my head) Alas I’m free of side effects which makes me a little paranoid. I’m not shaken or stirred as he goes through the usual rigmarole of general check ups and questions. A new nurse enters. She’s 6’ tall, blond and gorgeous. Ahh Miss Moneypenny. Take his blood.

Everyone’s Favourite Nurse has followed through her threat and moved to Southampton so now I’m under the watchful eye of Miss Moneypenny. Alas Moneypenny can’t do blood tests, she is more of a secretarial nurse (she gives me the urine sample jar) so she calls in another nurse. Nurse Blofeld doesn’t take prisoners. She doesn’t take blood particularly well either. Two arms later and I’m feeling like a pin cushion. After two hours I’m released into the outside world and head for the tube. It’s probably me but I’m sure I was followed home.

Rock n Roll Saved my life

So Shimon, my great friend, colleague and drummer is the only person I know that’s iller than me. He dominates the illness competition. If we were top trump cards he’d win hands down. He tops my MS with CF. He beats my cholesterol with diabetes. Between us we’re injecting 10 times a week which probably makes our studio the most drug abusive recording facility since the Grateful Dead made an album in 1969.

Well Shimon being Shimon with CF has decided to raise some money for MS which means he’s either a top mate or dyslexic. I suspect it’s the latter and at some point he’s gonna be really pissed off that I’m cured and he’s not.

Even better is that in order to raise money for me he’s going to become a world record holder. In Birmingham on July 13^th in aid of the MS society, 600 drummers will beat their drums simultaneously and create a record for the most drummers ever to play together . Birmingham Royal hospital will then treat 600 deaf drummers simultaneously and create another record. If you’d like to make my mate deaf please donate generously. Dollars, Pounds, Euros…all welcome.

www.justgiving.com/simoncooperonline

Lessons

As my friend B. would say…that’ll learn ya…(she’s got northern roots)…and it did. All last weeks talk of feeling better than I had in years lasted until Tuesday. The ends of my fingers went numb about four o’clock in the afternoon. I had the kids with me, we were going swimming. Quite abruptly the numbness rolled out up my arms and down the legs, ending in the pliers relay on my toes. Swimming was off the menu.

Hey kids, what about we go to the park? I'll sit in the café with a cup of tea, you run around and be children...
Awwwhhh daaad, was the despondent answer.
What about I throw in a treat from the shop, an ice-cream and staying up past bedtime?
How big a treat?
Big as you want.
Hooray! We love Dad! …who said parenting is difficult? It’s expensive, but it’s not difficult.

By the time we got to the park even lifting the tea cup seemed like an effort (full cream milk…should’ve asked for skimmed) and random pains were shooting through my arms. But then the real hell began…a screaming baby with an un-attentive mother. Really, if you’re going to have a baby that screams could you either show a bit of effort in stopping the noise…or go home. Don’t inflict ear piercing baby on everybody else in the café…My cup of tea was shaking, I was shaking, the whole afternoon was going down the pan.

Things settled down a bit during the evening and I put in a good 12 hour shift in the sleep department. By the morning I was cautiously optimistic. That’s the problem with this relapsing-remitting bit. It lulls you into a false sense of security. I could have sworn I had got over MS last weekend. Completely cured.

But by Friday I was feeling fine and dandy again in time for my Birthday. Cured – ill – cured all in the space of a week. We all went to a nice pub with good food and playground for the kids (why aren’t there more of those?) B. got the drinks in and I sat back confident that all was well with the world. Then the spasms started again. Full on jerky-twitchy-what's-wrong-that-bloke-spilling-his-beer-over-there spasms. That’ll learn me.