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.


  1. It makes sense :)

    Not sure about the Greens though. Labour still seem best of a bad bunch, and think how much you'll enjoy being disappointed in them if by some miracle they do win!

    Keep rambling ;)

  2. Dear Mr. Sweeney,
    By all accounts do continue the rambling.
    Reading your tweets or blog entries is a unique kind of pleasure, no: of a gratifying sense of dealing with a very special fellow homo sapiens - for which I am thankful.

    I first saw and heard you on Whose Line, by the way; got the show introduced to me by a friend - if you wonder why a guy from Poland is commenting:).

    1. Poland has been well represented by many carers over the years. Thank you for your lovely work and thank your country for its lovely vodka.

  3. Mr Sweeney "whilst suspended in my slang 120 cm above the floor" surely this is a lyric worthy of Bowie.

  4. Thankfully for vicariously adding the image of Prince Philip in a slang to my bank of nightmares.

  5. I just found your blog and I just have to say I hope you provide another update some day. Your insight and experiences are illuminating, and your wit truly cutting. I hope you're keeping well.