Stuff

Thinking Above My Weight

2012-02-15T04:06:00.000-08:00

My daily routine is not dissimilar to that of the average student. 18 hours a day in bed, emerging only to eat, surf online, drink, watch TV, smoke spliffs with the occasional bout of furious cramming.

Throughout this not so bleak but pleasantly mild mid-winter, I have been spending all my time in my room and a large part of that time on my own. T’was not a problem as I agree with myself when it comes to cricket, Catholicism and cheese. I share the same taste in music and films as me and I have a similar sense of humour. I get on very well with me and suspect that I might have a little crush.

Obviously, I will never act on it because I don’t want to ruin my friendship and I don’t know if I feel the same way about me as I feel about me.

My roomboundness might read like dreadful solitary confinement. Cut off from the world and doomed to slowly lose my tenuous grip on reality. Perish the thought, m’dears as I have had plenty of time to adjust to my shrinking environment.

I haven’t lived in the real world for several years. Catching a bus, cramming myself into an overcrowded underground carriage, going to the pub, popping out to pick up a newspaper, bumping into a friend on the street, going to the cinema or simply opening my front door and looking down the path to my front gate are nothing more than memories. That was a different me who I barely recognise. He is as far removed from me as the Jim Sweeney in purple loons, Boy Scout belt and lime green granddad vest who should never have been allowed to go shopping for clothes on his own.

In fact, he is as far removed from me as the Jim Sweeney who wrote that blog back in September 2010

My attitude to my MS has not changed and I still consider it an uninvited squatter rather than an overbearing landlord. My personal motto, “Grab life by the ears each day and French kiss it to the ground” is hardwired into my brain and I’m still cramming as much knowledge as I can manage into my mental warehouse.

My general attitude remains perky but my physical deterioration, increased muscle spasms and constant weariness reveal a body that is fit for only one purpose; it provides a home for my spluttering brain.

As a former participant in the human race and now interested spectator, I find myself thinking about life, death, the human condition, the future and……me.

Days seeping into weeks of ruthless self-analysis, picking away at my deepest feeling, darkest fears and attitudes and judging myself accordingly. Fucking miserable, bollocksy, up my own arse, self obsessed, amateur self-therapy and fabulously helpful. I came through it all with Popeye’s words chiming loudly in my head.

“I am what I am and that’s all that I am.”

My wheelchair philosophy on the human condition, our overblown sense of importance and our cosmic insignificance is best kept to myself and a mental health care professional.

But there isn’t a day when I wouldn’t want to listen to someone else’s thoughts.

@V_NYC. The camera has been
surgically attached to her face.

Fortunately, I have managed to garner a large extended family of performers and civilians and any time spent with any of them is precious to me especially with those who CAN be arsed to turn up with a decent present, Colin. These afternoon visits allow me to plug into the real world for a few hours as well as learn some new tricks.

On a recent visit, I learned more about mathematics from Lyn and Karen in 90 minutes than in five years spent cowering in fear of bullying Mr. Tope.

I have been a keen Twitterer for some years now and it was a delight to meet up with @val2go and @V_NYC. An unexpected opportunity to learn about other people’s lives in more than 140 characters.

@VAL2Go is the sulky girl with
the poodle. Yes,that is Laurel
and Hardy.

From the old Comedy Store days, “Pointless” winner @fallenangel2106, and anything but pointless, @chrishornby brought me up to speed on the intervening years since we all last met. I am still overwhelmed by the beautiful blanket that @natteringblonde had delivered to my house. It is a genuine work of art and a tribute to her Amish friends

My other twittering followers have sent me T-shirts, chocolates, perfume (a dab or two behind my ears keeps the carers on their toes), DVDs and thoughtful, caring messages every day. Believe me when I tell you that there have been many mornings those messages have stopped a doom laden black day in its tracks.

My days of regular tweets have passed, as collating my thoughts into coherent bite-sized chunks is proving to be as easy as eating soup with a fork. My useless fingers don’t help matters and, despite my wonderful voice recognition software, the whole process has become too time-consuming and tiring.

My fingers are now so floppy that I have to run my nose across the touchpad to move the cursor. This innocent action could be misinterpreted by my carers who might think I am sniffing cocaine. Although it was always the showbiz drug of choice, it was not for me. Yes, I tried it a few times but never inhaled.

Eventually, I will have to rely on other people to type for me as well as reading all my e-mails so no more hard-core cybersex, Colin.

The blanket I received from
@NatteringBlonde looks
a bit like this but mine is
much more better.

I will try to reply to any messages with a DM but it’s time for me to say, “Bye Bye Twitter”.

From today @aJimSweeney will remain open, if effectively
dormant. Any twitterer who finds themselves in my neck of the woods should tweet me, and I’m sure that we can rustle up some tea and biccies.

My time and energy will continue to be focused on friends, family and my Christopher Hitchens-inspired, never ending search for brain food.

Last year's me with The Comedy
Store Players who just won't take
a hint.

One of my upcoming targets will take some serious loin-girding as I will be attempting to crack “Ulysses” by James Joyce. A good friend has loaded up the award-winning unabridged audio book onto my laptop.

At the moment it’s sitting in iTunes, waiting patiently. It knows that I know that it knows that I know that it’s there. Waiting. Just waiting. Silently challenging me each time I tiptoe through my music library. At the moment it’s a Sergio Leone standoff. We’ll just have to see who blinks first.

One of my many always enlightening and occasionally hysterical discussions with @bh_films rekindled my desire to write the short film that I mentioned in my April 2010 blog. It is going to require considerable brain rummaging but I have already set myself a Douglas Adams deadline. 10 mins film = 10-ish pages. First draft on her doorstep, 17^th March (2012, ideally).

Nobody else would be seen dead in
that shirt even though we are
talking 1970s fashion.

I hope to be able to keep on blogging. It depends on my ability to concentrate and my brother’s state of mind, as he has had to type most of this offering. He is sitting there now staring vacantly at a blank screen, gently rocking back and forth, mumbling, “No more rewrites…no more rewrites…”

Maybe this Jim Sweeney is not so different from that Jim Sweeney of 2010: I hadn’t planned on being around in 2012. But now that I’m here I’d better get used to it; Olympics, Euro 2012, another Formula One and Premier League season! and I've got nowhere to go and people to see.

So. Let’s all agree to meet back here on…uh…let me think about it.

…and I nearly forgot. Douglas Adams?

I love deadlines. I like the whooshing sound they make as they fly by.

I'll love you and leave you with music to sooth the savage beast.

Jim x

Fear Eats the Soul

2011-04-04T02:51:00.000-07:00

“Writing is easy. All you do is stare at a blank piece of paper until beads of blood appear on your forehead.”

Gene Fowler

…and do I have a bloody forehead?

(Rhetorical, not a competition.)

This blog has been a long time coming. First draft? 27 February 2011. Finish, read, scream, rewrite, read, crumble up laptop and toss it in the wastepaper basket. A fresh start, a new blog, a clear understanding and within a matter of weeks the wastepaper basket was overflowing.

All too soon it's Sunday 3rd April.

No more tweaking, prevaricating and bollocksing around.

We're here now. Prepare food and drink. It's a long one.

It had been my intention to keep the world up to speed concerning developments in my progressive MS but this has been hampered by developments in my progressive MS.

Since posting my original blog I have been keeping the black clouds at bay. Well, trying to keep the black clouds at bay. At times, it has felt as though I am fanning those cumulus whogivesafuckus armed only with a handful of pigeon feathers.

Result? Limited success and a homing pigeon that veers slightly to the left.

Last September, I wrote about giving my brain an autumn wash and that was fine. However, I wasn't prepared for the turbocharged, “ batten down the hatches this could get ugly” spin cycle that followed.

AllNot real.

My thoughts/ideas/messages from Elvis started behaving like a kindergarten class rushing around all over the place while I'm trying to get them to sit down. No sooner would I have one idea patiently waiting than another idea would burst in and require my complete attention and thus allow the first idea to run outside and play on the swings.

Classroom disappears under a flurry of paper planes.

At first, I was surprised to discover that I wasn't really bothered by the MS sponsored brainswirl. On the contrary, I enjoyed my cerebral merry-go-round. If this was MS in the brain, bring it on. This is fun!

Textbook Stockholm syndrome.

It didn't last long and the melancholia bearing clouds rolled in.

I have never experienced such a profound all-consuming sense of despair, not even when watching Nicolas Cage.

Phone left ringing, e-mails left unopened, visits from friends postponed, iPod silenced, and TV pumping out the visual Valium all the live long day. Lost in thought although if you had asked me what I was thinking about I couldn't have told you because I would not have remembered.

The world was Matrix coloured and I sat in the middle while it swirled around me. Nothing entertained, irritated, excited or even bored me. Nothing caught my imagination or stirred my emotions.

Anybody attempting to have a conversation with me would be disappointed. I'll talk to anyone about anything at any time but I had nothing to say. It turns out that the VonTrapps were right; nothing comes from nothing.

The Captain. In the Gazebo.

With Maria

Life didn't bother me. Nothing bothered me. I was no longer part of the world and it no longer interested me.

I'm not quite sure how long I remained in this state of perfect apathy but it broke just as quickly as it had arrived.

Therapy? No. Medication? No. Meditation? No.

My wonderful carers had become used to my silences and wouldn't press gang me into conversation but chat around me. Not excluding me but not demanding any response. I could join in if I wanted but if not, they carried on without me. It was one of these conversations that hooked me back into the real world; a discussion about spaghetti Bolognese.

Liz and her mum who cares

for me, too.

Carer 1: “… onions, garlic, some chopped up carrots…”

Carer 2: “Cream.”

Carer 1: “Cream? In a bolognese sauce? No way! My sister uses milk though…

Carer 2: (laughing) “No. I meant cream.”

Carer 1: “I know what you meant but cream would taste disgusting.

Carer 2: (sobbing with laughter) “No. Not any cream, Jim's cream.

Carer 1: “Jim's cream?”

Carer 2: (barely able to breathe) “The cream for Jim's bum.”

Carer 1.

Cooks for herself. Thankfully.

Penny drops. Both carers in hysterics…and me too.

OK. It's hardly Noel Coward arm wrestling Oscar Wilde but context is everything.

This little scene was played out as I lay on the bed wearing nothing but a catheter and urine bag (form a queue) having been towel dried after my morning shower. Then, they apply E 45 cream to my whole body and a more intensive cream to sensitive areas like my bum.

They work from dawn to dusk (not a metaphor). They care for people with Alzheimer's, dementia, strokes, multiple sclerosis, paraplegics, quadriplegics, alltheotherplegics. Bathing, dressing, toileting, general housework, shopping, preparing breakfasts, lunches, dinners, brewing a lake of tea, feeding, washing up and listening to clients for whom they may be their only contact with the outside world.

Carer 2 On her lunch break.

They do all this without complaint for a wage that shames us all.

…and for a few minutes past 8:00am on a grey spring morning, the three of us giggled helplessly with faces wet with tears like a bunch of kids in the playground.

Result? The clouds disappeared and normal service resumed-ish.

My deflector shields are damaged and my ego canna take it, Captain. It doesn't take much to have it whimpering under the bed. It has to be coaxed out gently with old episodes of the Masterson Inheritance. Having to concentrate on a single task requires whatever and my short-term memory ain't what it was when I started this paragraph.

The clouds seem to be staked out permanently on the horizon. Some mornings can start a little misty but that soon clears. At the moment, I can handle the bad days with various strategies including a nibble of Daddy's special chocolate. It works for now but the day draws ever closer when I will be running for the shelter of a Mother's Little Helper.

“And though she's not really ill/

There's a little yellow pill”

Mother's Little Helper

My brand-new friend melancholia had not been induced by fear of death. I know where I'm going and I am completely at peace with myself. All my bags are packed and I'm ready to go .

When I write about dying and the MS, it can often set off a shower of e-mails/comments telling me that I have given in to the dogma of Western medicine. On more than one occasion, I have been advised to look to the East by people who live in the West.

Life looks a little different from the inside and Western medicine is working fine for me. I do have my own mantra; “Love What You Do” by the Divine Comedy. It always does the trick and requires no incense, a dash of medicinal marijuana perhaps but not mandatory.

Fear of death? I'm with Epicurus:

“Why should I fear death. If I am, then death is not. If death is, then I am not. Why should I fear that which cannot exist while I do?”

(It's a bit clunky, Epi. You could have tidied it up in the rewrite.)

It did not stem from any fear of judgement in the afterlife. I'm with Lucretius:

“Fear is the mother of all Gods. Nature does all things spontaneously by herself without their meddling.”

(Lucretius. Over 50 years before you know who showed up.)

God and I parted company in my childhood. At least with Santa you get presents.

My melancholic pea souper might have been brought on by my growing weakness and my disappointment at no longer being the architect of my own demise but the deep sense of despair came from another source. It's all tied up with evolution/political dogma/religious dogma and my new perspective on the world that I am leaving. I'll stop there for now or we'll be stuck in this blog until 2012

Project Vickie and me.

Note the fear in my eyes.

My old projects have been cancelled or postponed. My dwindling energy levels put paid to the theatre piece with twittering @lynnfergy and twitterless not@lensimpson.

The short film will stay in my head where it is already a huge success and won a BAFTA

Project Vickie on hold as she completes her Law degree. They intend to publish her dissertation, “Why Bad Men Do Naughty Things.”

You Tube vids? Maybe more, maybe not.

Twitter? Most definitely. Yes, I will keep on twittering. My spinning brain can handle bite sized chunks of writing. Whether what I write will make any sense is another matter.

However, I am still cramming truckloads of newly acquired knowledge into my brain. David Attenborough, Stephen Hawking, Brian Cox, Michael Moseley, Jonathan Miller, Richard Feynman and Professor Jim Al-Khalili explain the unexplainable to a man who has feigned knowledge and bluffed his way through life.

I am not so much academically challenged as academically nutmeg'd, having left school at 18 years with

a) The player on the left represents the academic world.

II) The ball represents knowledge.

3) The player on the right represents me.

the same qualifications that I had at 16 years (7 O-levels, the analog equivalent of GCSEs) Art ,English-language, English literature, French, Geography, History and…Latin. (Very useful if you want to go on to teach Latin.) Basically, I'm not the sharpest spoon in the drawer.

Aristotle?

Schmaristotle

Now, after hours of feverish late night swotting up over a hot DVD player, I dare to challenge Aristotle.

Aristotle

"Nature abhors a vacuum."

My response.

(clears throat, sips water, adjusts testicles).

"No it doesn't."

That all singing Austrian couple were wrong as well; something can come from nothing.

(Quantum fluctuations. Don't ask.)

...and I'm improvising again. Pure undiluted game-free honest to goodness unstructured frewheelin' impro.

It's all Len Simpson's fault. He turned up with a camera and Matilda Leyser. She and I had barely met and never improvised together. Cameras rolled and we found our way through a scene between a brother and a sister.

My little impro sister, Matilda.

It was absofuckinglutely thrilling, exciting, fresh, surprising and joyous. I'd forgotten how much I loved what I used to do. The brother/sister relationship will be explored further over the coming however long.

Potty mouth Lisa

Camera impro has become a regular fixture. The only rule is that it must be someone with whom I've never improvised. The next visitor was Lisa Hammond and what jolly japes ensued. Hilarious cripple on cripple impro. Backflipping dwarves and leg length piss bags.

(Panto directors and theatre visits for the catheterised)

Playing with Lisa made for wonderfully liberating fun. It was impro taken seriously but that didn't stop us all laughing ourselves to a halt with alarming regularity.

The MS has moved on, the journey continues and I'm well prepared for whatever happens. Having ditched my superstitions in childhood and exorcised those Catholic demons I am not troubled by fears of judgement beyond the grave. There is only one seemingly unfathomable question that worries me

Milk? In a bolognese sauce?

Thanks to twittering @lizzieroper for this speech which sums it all up perfectly

Nuns Escape Unscathed

2010-09-28T07:49:00.000-07:00

My MS never ceases to surprise me.

Not content with having rewired my immune system so that it attacks my nerves with a gusto that it really should be applying to the bad guys, it has PMS.

Punctured My Scheme.

Regular readers will be aware that I intended to pull the plug on my body before the MS had got into the attic and destroyed the main fuse box.

“The best laid plans of mice and men/ oft go awry.”

(I thought that quote came from one of the usual suspects; Shakespeare, Oscar Wilde or Match of the Day’s Mark “Corridor of Uncertainty” Lawrenson. It does not.)

Whilst I was relishing every second of every game in World Cup 2010, my MS quietly worked its way into my right hand. Result?

(a) Beautiful Spain won the World Cup beautifully “encima el tuyo, Alemania”

(b) My right hand joined the left hand and went on strike “encima el tuyo, Jaime”

Now if I hold both arms out in front of me my fingers flop down so I look like I’m about to play the piano. My hands cannot pick up chocolate biscuits or get a good grip on anything

Yes, anything.

The days of having a good old rummage downstairs are but a memory. Actually, the early morning tenting has been sporadic at best since the catheter was installed. My appendage is as useful as an appendix.

By substituting the word “death” for “suicide”, Terry Pratchett had managed to remove the stigma that had been so wrongly attached to the final act of life. Assisted Death had always been my plan. Someone to watch over me as I quietly slipped away.

Any pills could be crushed into a powder and laid out before me by a good friend who had offered to be my assistant (conjures up images of a tall, long-legged, spangly-leotard-wearing assistant who distracts the audience with helpful pointy gestures and a flirty smile. That image still haunts me, Andy.)

My own fair hand has to deliver the fatal dose, but my own fair hand has turned foul. This means that I could not pour the ultimate fix into a glass of a fine vintage Burgundy (posh Pinot Noir.)

“The best laid schemes of mice and men/ oft go awry/ leaving us naught but grief.” (Bet some of you are feeling smug and about to write an email to tell me it’s a misquote; don’t worry. I’ve got it covered.)

As the awful truth dawned on me the black clouds rolled in and I withdrew from the world and disappeared into a fog of depression.

My MS had won the final battle. Now I could look forward to feeling my body slowly falling apart as my brain struggled to hold on to memory and reason. I would have to face another Winter after all. Going to sleep every night in the hope I wouldn’t wake up and waking up every morning in the hope that this would be the last day, nothing for me to do but to lie here waiting for my MS to finish the job.

Bollocks to that! My MS can take that plan and shove it right up its arse, which is my arse, so maybe that’s not such a good idea.

Watching familiar old movies, listening to familiar old music and recalling familiar old memories marked the beginning of my journey back to the real world. I started to feel better about myself and donated my self-pity to the local Catholic church.

Then, I needed to make sure that my brain was clear had a good spring clean, or rather a good autumn wash. My MS has progressed to its next stage. My whole body is weaker, my spasms are stronger, my limbs are stiffer and my breathing a little shallower. On the plus side the medicinal marijuana is working perfectly, the chocolate still tastes chocolately and the Pinot Noir continues to flow freely. Basically, it’s a case of six of one and half a dozen of the other, and I’ve watched enough Carry On films to know that “the other” is a lot more fun, Matron.

Next, I needed to lie back and revisit a few important educational DVDs, but began my revision with an audio book.

“The God Delusion” by Richard Dawkins searched out any tiny residue of Catholic dogma hidden in my subconscious and killed it violently, jumped up and down on it, set fire to it, sucked all the ashes up with a Dyson, opened the Dyson over a bucket of shit, flew to Vatican City and dropped the load on the Pope as he gave his Christmas message.

I became a fundamentalist atheist waiting for my first mission, obviously not as a suicide bomber. No afterlife = no room full of virgins = what’s the point?

“Cosmos” by the gentle Carl Sagan led me through the evolution of the universe with its simple language and simple message.

I became an evangelical atheist desperate to go wheeling round Wimbledon stopping passers-by and saying with open eyes and wide smile, “Have you heard the great news? There is no God! Go forth and have a fucking good time.”

“The Ascent of Man” by the cleverest man I have ever seen or heard, Jacob Bronowski, clinched it eventually.

Mind you, it put my 7 ‘O’ levels (old, black and white version of GCSEs) to the test. I had to watch each episode at least three times, and the one on physics five times, and I still only understand that crystals aren’t just pretty but have some important stuff about physics in them too.

Jacob made me an atheist at peace. There is no God. This is it.

My new life calendar begins on 1^st October 2010. Whatever time is left for me will be spent filling my head with thoughts, facts and experiences.

I want to be able to say that…

“My brain hurt like a warehouse/ it had no room to spare/ I had to cram so many things to store/ everything in there."

(David Bowie. 1972. “Five Years”. 3^rd Line. 3^rd Verse)

I am going to devour any and all the knowledge I can collect on the single most important interest in my life. The months that I have spent just thinking about anything and everything has brought me to the conclusion that the only aspect of life on earth that has ever mattered is people.

My family are wrapped around me to keep me warm and sane. My Mum calls every day and my brother Sean has remained unbelievably calm as I have dictated this blog and rewritten it time after time. The Comedy Store Players won’t leave me alone. They phone, they snail mail, they tweet. They are my band of loving stalkers. All visit regularly and fill my room with laughter, gossip, and wonderful gifts.

Other famous friends phone, visit, email or send me DVDs of Gogol Bordello playing for their lives.

My lifelong friend Seeta Indrani knows how I feel about her and my other lifelong friend Steve Steen knows what I think about him, but that hasn’t stopped him phoning and banging on about Fulham.

There are projects in the air.

(a) Writing a short film about a couple. Lovers? Friends? Married? Their conversation leaves these questions unanswered but slowly a secret is revealed. He is bedridden but she is still mobile. Casting? There is an actress who would be perfect for the female role, but I am having difficulty trying to find an actor who can play a bed ridden, weak man with a progressively degenerative medical condition.

(b) Lynn Ferguson is working on a script with Len Simpson. I was attracted to the concept because of its interesting historical context, but mainly because it is also about me.

(c) Vickie Cullen. This is a young comedian who has performed her set at over 20 Open Mic spots and died on her arse every time. But, she finds the positive each time she fails and wants to go on again until she finds her voice. This is the project that excites me most. Her enthusiasm is infectious and I feel re-energised whenever we talk.

(d) My YouTube Vids. Fun to make and they keep my brain ticking over. SirRobertBellinger @YouTube.

(e) twitter. There have been moments when I have felt miserable but a click on Twitter will always lift my spirits. Not only my funny famous showbiz chums, but those who are following me and send me messages bulging with love. They also provided the coded message that I was to post when my assisted death-day had come. The message? “Punching Some Nuns” (Thanks to @Numabo)

It may well be true that…

“The best-laid schemes o' mice an 'men, Gang aft agley,

An' lea'e us nought but grief an' pain,

For promis'd joy!”

(Robert Burns. 1785. “To A Mouse, On Turning Her Up In Her Nest With The Plough”. 3^rd Line. 7^th Stanza).

… and it may be an ugly ride but you’re all coming with me because I will keep the world informed. Not because it needs to know but because I need to tell.

PMS? Perhaps the British term PMT is more appropriate:

Prognosis? Mildly Tedious.

Carl Sagan