Feb 02 2014
10 Comments
Blogging

Access Denied

Randy McNeilCanadian Randy McNeil is my guest blogger today.

He was diagnosed with MS in 1999 and was given chemotherapy treatment, Clyclophosphamide.

After having to give up his career as an industrial millwright mechanic, he returned to college to study community justice and services. And this is where he was confronted with a new set of problems…

Wheelchair ramps – they can be the best thing. When I was still walking, I was happy to see them becoming more commonplace for people with mobility challenges. Then in 2006, MS changed my life by taking away my ability to walk. Suddenly I now had a disability and a new way of life bestowed on me.

I accepted this and got an A-4 Titanium wheelchair, started a new journey and went back to college.

Whilst there, a new building was being constructed and I thought, great, it’ll be built with a better standard of accessibility than the other buildings on the campus. In fact, it was worse. I got the construction superintendent to come over to the ramp in question and challenged him. His reply?

‘I’m not going to argue with you, it’s been passed by the building inspector.’

‘Well get into this wheelchair and show me how you can use the ramp.’

‘I can’t do that.’

‘Why?’

‘I’m not as strong as you are….’

  • Unable to get any further response, I went to the newspapers – read my story here and see for yourself the excuses they came up with!
  • After graduating, I began travelling around on public transport and discovered a problem with community accessibility – just because a bathroom has grab bars does not make it accessible. Again, I got nowhere and contacted the newspapers. This got results immediately and they changed the bathroom stall on the same day! Read about my success here.
  • Next, I took on the local mall – why should I take my life in my hands just to get there? Read what happened next.

Why stop there? I have now started a global petition to persuade Google to include an accessibility option on its worldwide maps. Please take a few seconds to add your signature.

Together we are stronger.

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Jan 30 2014
22 Comments
Emotions

Catching Me When I’m Falling

depressionHours, days, weeks can go by and I’m absolutely fine.

I have a good life. MS is under control (just about) and no longer scares the living daylights out of me. I sometimes struggle to remember what life was like before it.

So why do I have moments when I plunge into a deep, black depression? Just like MS, there is no way of knowing when it will strike. I can have had the best of days, life is on track and the future is looking a shade more defined than before. Then suddenly the shutters come down, blocking out the light.

This sensation is like a relapse of the mind – a sudden, catastrophic descent into despair. I’m aware it’s happening, just like physical relapses when there is a period of disconnection before the symptoms flare up, snatching control of my body away from me.

I know people with MS are more likely to experience depression, whether due to our circumstances or from our brains playing havoc with our minds. Whatever the explanation, I need to find ways to cope with this. Perhaps it’s been around since MS started but I was unable to distinguish it from the shock of the diagnosis. Now life has reached a happier plateau, maybe I can see it in unsplendid isolation.

When it happens, I want to retreat, hide myself away and wait until it passes. But life gets in the way. I have a Teenager to raise and a house to run. I have a life.

My friends and family are unfortunately becoming used to helping me pick up the pieces. They catch me and hold onto me so I don’t fall any further. They don’t try to cheer me up or tell me how much worse it could have been. They are simply there for me.

If I knew how to fix this, I would. It’s an unwelcome visitor in the new life I’m constructing for me and my little family. It lifts as suddenly as it comes. Colours burst through once more and life is shiny, exciting and vibrant again.

I am trying. I can’t retreat, but I can sit out the storm.

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Jan 28 2014
10 Comments
Daily Life

Don’t Mention The ‘V’ Word

happy valentine's dayDuring the first week of January (when I went to stock up on Creme Eggs), I briefly thought about boycotting my local newsagent.

On leaving the store I was brutally confronted with a huge display under the banner ‘Winter Essentials’.

Alongside the de-icer, Arctic-proof gloves and those grip things you attach to your shoes, was a stand full of Valentine’s cards, plastic red roses and cheap teddies holding sateen hearts. Pah.

So having a significant other is now a Winter Essential? Double pah.

Not long after, I had an email offering me and my significant other a ‘truly romantic experience on that most romantic day of the year’ at my local gastro-pub. A glass of cheap sparkling wine on arrival, a wilted red rose for ‘the lady’ and a three course lovingly-prepared meal to ‘tingle the palate’. And all for only £42 a head. Are they having a laugh?

The evil-singleton side of me toyed with the idea of schlepping along on that most romantic of days, sitting in the bar and watching awkward couples crammed into the restaurant. But that’s a bit mean. Isn’t it?

Maybe I should launch myself back onto the dating scene? There’s a few problems with that though:

  • MS
  • I still dress like a student and don’t wear strappy heels. And I haven’t mastered the art of a sophisticated up-do.
  • I would yawn my way though dates, and not solely because my companion is regaling me with tales of his pot-holing.
  • MS
  • I still need to lose a few stone pounds.
  • MS

My friends and family are very encouraging though. ‘It’s not about the MS, it’s about you, who you are.’ ‘You have lovely eyes.’ (what they say to fat people). And my ever-adoring son, ‘Have you sent off your application for the next series of The Undateables yet?’

Well I reckon we should scrap Valentine’s Day. Let’s have a new celebration, Singleton Day. This would involve buying an M&S meal-deal for a tenner (including a bottle of wine) and scoffing/quaffing the whole lot on our own, with ‘I Will Survive’ playing on a loop in the background. We could encourage our friends to send us boxes of chocolates to help us ease the pain. Three layers of mascara would be an essential, all the better to show our tears with.

So spare a thought for us sad, lonely, slipper-wearing, talking-to-the-cat peeps. And all donations of recycled men gratefully received…..

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Jan 25 2014
8 Comments
Daily Life

I’ve Gone Over To The Mac Side…

appleThe idea of using an iphone used to fill me me with horror.

With my MS dodgy sausage fingers, the teeny-weeny keyboard would be next to useless, unless I wanted to send texts saying, ‘hmjjf keleow gdder’.

I had a Blackberry, ideal as the buttons are raised. Doing my research when it was time to upgrade, I stumbled into a phone shop. The salesperson was most unhelpful.

‘You want to stay with Blackberry? Hey guys, this lady wants a Blackberry!’ He explained in disparaging terms (not hiding his sniggers very well) that they didn’t even sell them any more, and would I want a phablet instead? Big buttons. Yeah, but a huge block of a thing I’d feel a right banana talking on.

Anyway, the boss solved the problem. He bought me an ipad mini for Christmas so I could be more productive in work (‘we can sink our stuff!’ Huh?). He gleefully told me I now had no option but to upgrade to an iphone.

Well, I was petrified. I took home the shiny new phone. The Teenager was impressed – ‘4G ready, like, mint.’ He stroked the phone reverently. He laughed at my pink stylus and warned me to buy a case pronto – ‘mum, dur, like you drop everything.’  Fair point.

A week later, I am smitten. I don’t do things by half, so I bought a book and slowly worked my way through it. Maybe I shouldn’t have face-timed the boss at 10pm last night though, just to test it out. I waved at him and admired his pyjamas.

I’ve downloaded a bunch of apps. I like most of them apart from the weight-loss one. I diligently add my weight every day and it informed me this morning that the date I would reach my desired weight would be 2023.

The keyboard is very patient with me, correcting all my typing mistakes and Siri answers all my questions. I told it the other day, ‘I love you’ and it replied ‘that’s nice. Can we get back to work now?’ I then asked it, ‘what’s better, a Blackberry or an iphone?’ The answer was, ‘Oh Stumbling, I’m all Apple, all the time.’ Me too…

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Jan 23 2014
12 Comments
Daily Life

A Life, Remembered

funeral flowersI went to a funeral today.

Regular readers will know I kept a close eye on my friend Tom. His 90th birthday would have been less than a month away.

The only person to send me a Valentine’s card in the last three years, Tom had a particularly special place in my life.

We compared ‘symptoms’ notes and medication, we talked about my M&S (his favourite shop and my least favourite illness) and he made the best cup of tea this side of the border.

After a final frantic few months when he was admitted and discharged over and over at the nearest hospital, he passed away. Peacefully, I hope.

Today was my chance to say Goodbye properly. I came with my mum and The Teenager. My mum  visited Tom when I was poorly after the Campath treatments and got to know him well. The Teenager last saw Tom on Christmas Day, when we popped in to see him.

Funerals. So often depressing and lifeless, we were blessed to have a twinkly-eyed Canon take the service. There were six of us.

But, you know what? It really didn’t matter how many people Tom had at his funeral. He was loved. Most of his contemporaries had died. This was The Teenager’s first funeral and he was moved. He sang the hymns with gusto (proud) and listened attentively to Tom’s life story.

The saddest moment had to be when the curtains closed Tom’s coffin from us. He was gone. He won’t be forgotten. But as Josephine Hart, the wonderful novelist said, we die twice. First, we die. Then we die a second time when no-one is around to mourn us.

With this in mind, we talked about legacies. What can we do in and with our lives that will leave a lasting legacy? How can we live on?

So, The Teenager is reflecting upon life and death. They are intertwined.

We toasted Tom. He lives on, because we remember him.

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