Monday, 9 February 2015

A Room With My View

I have been room bound, more or less, for the last 18 months (anyone tilting their head to one side, pulling a sad face and sighing need to stand next to a wall and bang their heads against it for a few minutes.)

My MS has kept me here for much longer than I had anticipated. I was still just about walking in 1999, the walking stick appeared in 2000, the wheelchair at the end of 2004, my current daily regime of 9:30 AM-12:00 PM and 6:00 PM-8:00 PM in the wheelchair and the rest of the time in bed, began in 2008.

It's 2015. The MS does have the run of my whole body apart from my neck, shoulders and face. It has been hard at work rewiring my brain so that my memory is little more than a memory to me now. I can picture the past imperfect high-definition but remembering forthcoming dates is a no go area.

"I saw you this morning/you are moving so fast/can't seem to loosen my grip/on the past" sings Leonard Cohen in his sublime, "In My Secret Life" and that just about sums my memory up perfectly.

I'm working on it and constantly check in with my carers, family and friends to make sure that I'm making sense and not completely losing the thread of the conversation. Apparently, I'm doing fine but I'm very aware that I'm clinging on to whatever subject is being discussed by my fingernails.

As my MS has progressed, I have had to get used to handing over control of my body to a variety of carers over the years. My private parts have long been open to the public and I consider them to be areas of outstanding beauty. It took time to not feel embarrassed about having other people wiping my arse but I'm used to it now.

I was having a conversation with my carers about…something or other whilst suspended in my slang some 120 cm above the floor having my usual wiping and realised what it must be like to be a member of the Royal family.

Giving control to other people was never going to be easy for a little control freak like me. But I have learnt a lot about myself as my prolonged stay has afforded me the luxury of giving me time to think.

People don't get time to think because they are too busy out that living their lives. Good luck to them but it really is worth finding time to just think without distraction.

It has taught me a great deal. After the many months of introspection where I forensically examined my inner self with a fine tooth comb and realised that I didn't like me very much, I had to pick myself up, dust myself off and start all over again.

A good friend told me, "You are not responsible for your first thought that you are responsible for your second." It's true. Remember it the next time someone does something that pisses you off. It takes an awful lot of energy to keep an argument going. Why waste it?

So, I've got a bit Zen in my old age but it doesn't stop me getting angry about governments treating people as "collateral damage" in the war against the deficit.

One of my carers is working despite the fact that she has screwed up two of her knee cartilages but she has to keep working because if she doesn't work, she doesn't get paid. Guess who I'll be voting for in the next election. I find myself thinking for the first time in my life that I might not vote Labour but will vote for the Green party. Don't buy all that bollocks about a wasted vote. Unless you are considering voting for the Conservatives or UKIP in which case you need to follow the instructions that I gave at the beginning of this blog.

Guilt. I changed my status from atheist to recovering catholic because during my long period of miserable self examination, I realised that there were still patches of guilt hiding in the crevices. Think about it. Guilt is a faux emotion. We are not born feeling guilty so it's not a natural emotion. We learn it or have it subtly driven into us by our parents or religion.

If anybody turns up here and says, "I had to come to see you because if I felt so guilty about leaving it so long." I would have to reply, "Don't take this the wrong way, but fuck off." Doing something out of guilt is a waste of time and usually walks hand-in-hand with its evil twin, emotional blackmail.

I'm rambling because I'm just going to post this without reviewing it so let me know in the comments section if any of it makes any sense, would you?

On the plus side, I have listened to the unabridged audiobooks of "Wolf Hall" and "Bring Up The Bodies." I love them both. if you are semi literate like me, try reading a book. You'll be surprised because it's really not as bad as everyone makes out.

Finally, a word about  Project V from my 2010 blog.She had gained a psychology degree and stayed on at University College London to get a Masters in business economics. She dived into stand-up comedy including hosting a midnight stand-up show in one of the less salubrious areas of Edinburgh where the standard of tackling was usually, "Show us your tits". She went out to Australia and what does she do now? I'll let her explain in her own words.

I now work at Passionfruit the Sensuality Boutique in Melbourne. We're a female run business designed for women with the feel of a hotel lobby rather than the classic neon-porn-cellar. The business was started by Michelle Temminghoff 16 years ago and I've come on board to consult customers in store and give talks and workshops to the medical community. I give talks to cancer surgeons and nurses about why sex is an important topic to talk about to patients and how to do it. I give workshops with spinal rehabilitation clinics on creative ways of 'hacking' sex toys to work with limited mobility. I pretty much give how-to advice and sex toy industry rules-of-thumb to anyone who makes eye contact with me for more than 2 seconds.

That's what I call a life well lived.

Friday, 30 January 2015

Rude Awakenings

My carers arrive at 7:30 AM every day. We are all very familiar with the routine. The carers know what to do and what order to do it and I know they will roll me, put me in the sling, undress me (steady people) hoist me onto my shower/commode chair and wheel me into the shower room. It's a tried and tested routine that runs as smoothly as Mo Farah on a regular training session; a nicely relaxed and steady pace without trying to break any world records. Usually.

Iresia, my Sri Lankan carer, arrives first and tells me that Josephine, my other carer, will be running late. Minor disruption to the regular routine but nothing too troublesome. Until.

Iresia arrives at the side of the bed to disconnect my overnight catheter bag which usually contains about a litre of urine. That's the usual amount give or take.

" Oh no. What happened?"

She holds the empty catheter bag. Where has all the urine gone? It was a long time passing and the bag should be nearly full.

She lifts the duvet to reveal exactly where it went; all over the bed.The whole bed is soaking wet including me which is weird because I don't feel like I'm covered in piss. My catheter bag had broken free from its connection to my suprapubic catheter.

A suprapubic catheter for the layperson  is a tube that runs from my bladder so I no longer have a normal male relationship with my toilet/floor.  (I thought they were called super pubic catheters which I assume meant they had special powers like converting the piss back into red wine. Sadly, it doesn't.)

By now Josephine has arrived and we immediately switch into code red. Sling quickly brought the bad and I am rolled over in the piss so that they can roll me over to fit the sling underneath me.

I make some grant of mild displeasure as my shoulder rests on a puddle of piss. Iresia gives a giggle and says, "like a swimming pool"

We all laugh and an appropriate response had already popped into my head.

"You just take the piss." I keep it in my head because her English is not that good and it would take to long to explain.

Safely in my shower/commode chair (yes, my arse is a stranger to the toilets seat) Josephine wheels me into the shower room, parks me up, closes the shower room door and returns to help  Iresia strip the sodden bedclothes,  night shirt and disinfect the bed completely, take the soiled  bits and pieces and put them in the washing machine and then take fresh bedding from the chest of drawers and make the bed.

I'm sitting on my own in my bathroom hearing all this kerfuffle as they sort things out and think to myself that anyone who believes immigrants are taking their jobs is welcome to apply to take care of me as well as my non-English carers do everyday.

Otherwise, be grateful that there are people who are willing to do these tasks  including wiping my arse  for a pittance and incredibly long hours.

I love them all.

Tuesday, 28 September 2010

Nuns Escape Unscathed

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 1st 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”. 3rd Line. 3rd 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”. 3rd Line. 7th 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.

I'll leave the last word to Carl Sagan and the Universe. That's the actual Universe and not the Catholic fanzine called, “The Universe”. Perspective putting time.