Hmmmm empathy v's sympathy. Having been in receipt of sympathy, I can safely say it generally makes me feel worse. For example, I have been on the receiving end of these comments, and several more that fall somewhere in-between.....

'Ohh you have MS? That's awful' .....sympathetic head tilt....'I know someone who had that. They died.' 

'I know someone who had MS. They were fine. Not like you. It must be hard.'

Aaaarrrrggghhhh! Everybody dies! There's not necessarily a direct correlation between death and MS. You may have a slightly shortened life span, but as you don't know when your expiry date is anyway, there's no point stressing about that!

With over 50 symptoms of varying severity, it stands to reason that no two people with MS are the same. Hence why it has been coined the 'snowflake' disease. Each and every one of us are different.

For clarity I include dictionary definitions;

Empathy: the ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation.

Sympathy: ( an expression of ) understanding and care for someone else's suffering.

Now, to me, sympathy sounds one step removed, and not truly felt, or meant. Meer lip service. And I get that in spades. Trouble is though, with sympathy, there is nothing to back it up. No action. The purpose of the sympathy seems to be that it makes the one offering it feel better. 

Empathy goes that one step further, and if you happen to be on the receiving end, you no longer feel so alone. And as such you feel you matter. And this makes your load lighter.

Let us not forget that MS cannot be fixed. And a million other situations cannot be fixed either. But they can be made more bearable, if a connection is made. It's not about fixing the unfixable, it's about connecting, and being sincerely and genuinely present. 

Can you be that person? Make the connection. Take the time. REALLY be there for someone.

Watch this. It clearly defines the difference between empathy and sympathy with humour....

For mobile viewers, click HERE

Today I saw a video that I want to share with you all because it resonates with me so very much. A different illness, but the lost feeling of being carefree is so very similar. To lose being carefree really takes it's toll. It is a feeling I have lost. I had not been able to vocalise the feeling, or give it gravitas.

I felt I had lost or misplaced a part of me, but I wasn't sure what it was. At least I now know what it is that I am missing. Or rather what it is that I'm carrying. In a sack. Like a dead weight that I have to carry everywhere. That I can never put down or forget. And sometimes, it prevents me from moving, breathing or feeling. Numb. It takes my breath away, and leaves me saddened.

This morning, I woke early. And as I lie there in the quiet, I felt good. I had not moved, so I could forget, albeit briefly, that my physical self was so very restricted. So whilst the house slowly began to stir, I allowed myself to dream about what I'd do if I was not restricted....

Well, the little man and I get dressed up against the cold, and we go to the park. We walk down to the horses at the end of the park and exchange a hello. We leave with hands smelling of horses, and with the feeling of them on our palms and fingers. A smell I love. A smell of my youthful, carefree days.

Back home, and I carry the little man up the stairs to bed for his morning nap. I gather the gifts that are piled in our bedroom, and carry them downstairs to begin a wrapping marathon. Writing tags, cutting paper and sellotape, the pile slowly shrinks. And I slowly begin to feel I'm winning.

The little man wakes, and I strap him in to the car, and go to a pub to meet friends for lunch.


...And that is how I spend my dreamtime...

I know how to dream don't I? The every day, normal things. They are sorely missed from my days. Absent. And the hole they have left, and the sack I carry is weighted with their loss. And to replace the loss of the normal, is a heavyhearted anxiousness. I want so much to put the sack down.

Be carefree. Not careless. But carefree.

For mobile viewers click HERE.

Since my last post, I've been thinking about the facts and statistics regarding disabled people here in the UK. Here are some of my findings.....

* There are 9.4 million disabled people in England, which equates to 18% of our population.

* 45% are males. 55% are female.

census 2011

* The prevalence of disability rises with age - 1 in 20 children are disabled, compared with 1 in 5 of working age adults, and almost 1 in 2 over state pension age.

Office for Disability Issues updated Department of Work and Pensions Estimates based on Family Resources survey 2009/2010

* Only 17% of disabled people were born with disabilities. The majority acquire their disability during their working lives.

*Less than 8% of disabled people use wheelchairs. The majority of impairments are not visible.

* People are more likely to become disabled if they have a low income, are out of work or have a low educational qualification.

Papworth Trust disability facts and figures 2010.

MMMMmmmm and not for the not so factual bits.... these bits are just shyte...

* 38% of people believe disabled people are a burden on society.

* 28%of people believe there is ill feeling around the perceived extra support given to disabled people.

I would guess that the same 28% read The Daily Mail.....

For mobile/tablet readers, click HERE.

* 27% of people think disabled people are treated differently because there is a lack of knowledge around disability.

* 65% of people have admitted they avoid disabled people because they don't know how to act around them.

BT - Ready, Willing and Disabled Event 2011

* 180 disability hate crimes are committed every day in this country. EVERY DAY!!!

And that is just a taster of the facts. You can check it out in it's entirety for yourself at :

                               www.efds.co.uk/resources/facts_and_statistics

I've ran out of things to say. Kind of leaves me a bit speechless.

Because Who Is Perfect Anyway?

December 3rd is International Day of Persons with Disabilities. Did you know that? I didn't. I'd never heard of it, and that in itself was interesting. Anyhoo, investigating it, I learned a couple of facts....but before I did, I had to look through google and in doing so, I discovered other irrelevant 'facts'. It was on the first page, but 6th in line behind celebrities birthdays (Amanda Seyfried turned 28). The placing of this day, December 3rd, on google, shows me just how important it is.

*15% of the world's population live with some form of disability. This equates to one billion people. Makes you think, hey?

*Physical, social, economic and attitudinal barriers prevent disabled people participating fully, effectively and equally as members of society.

So, those barriers are preventing 15% of the population from contributing, taking part, and spending. And that makes no sense. Not for the individuals, not for the people and not for the businesses. Let alone the Countries and the World. And that makes no sense.

And what led me to this was my daughter discovering this video.....I want to live in Zurich.

For mobile/tablet viewers, click HERE to view the video.

Because who is perfect anyway?

It has been bought to my attention (by which I mean bullishly stated/SHOUTED) that a couple of people out of the thousands of you, are not happy with me using any words derived from the word spastic. I am only ever referring to myself, and I am aware it can be used as an insult. I am not seeking to insult myself, or anyone, rather I am seeking to claim that word back, and diminish it.

So, to discuss the provenance of the word. It is a medical term, used to describe muscular weakness and spasms. Consultants have used it when describing what Multiple Sclerosis has done to me. In particular to my legs. It's VERY upsetting to hear that word used to medically describe yourself. One things for sure, I don't start SHOUTING at the doctor for being DISGUSTING for using that term to describe what's happening to me, and why. It's VERY upsetting to live with it. So I use it to refer to myself, in a bid to reduce the horror. I know it may sound clunky, rude and uncomfortable to other people. Living with it is definitely clunky and uncomfortable. And it has certainly rudely interrupted my life. If you don't like it, don't read my blog.

I will not be censored/controlled/bullied publicly, by someone who could choose to contact me privately to discuss her concerns and opinions. But no, she, for whatever reason, prefers to publicly SHOUT at me and talk AT me. Never once a discussion.  I know that the blog is global, and that I'm inviting responses just by putting my thoughts and words out there.

But not from this person, and not in this way.

This person writes about the fantasy of rape and necrophilia. When she invited me to read her blog, I chose not to, and privately told her of my decision. I would not tell her, or anyone, what to write, or what not to write, and would appreciate the same in return. If you don't like my writing, or what I write about, don't read it.

For mobile viewers click HERE. I love Adam Hills, so I recommend you watch it all, but if you can't, whizz forward to 10.50.

I am not on the outside, looking in and poking fun at something I have no experience of. I am on the inside, living and experiencing this every minute, of every day. I wish I wasn't. But I am. So if I say spaztastic, and if that makes me laugh at myself and the situation I find myself in, and what I have to deal with, so be it. 

AAaaaarrrrggghhhhhh!!! But...I smell something brewing....

This weekend was interesting. Friday night saw me at a friends having dinner and conversation. The dinner, the conversation and the company left me feeling full and satisfied. A good night.

On Sunday there was a family meet up, to celebrate a birthday. Several attempts had been made to find somewhere with suitable wheelchair access and a disabled toilet. The two prerequisites to allow me to join in and have a stress free easy time. The place that was finally settled on declared themselves accessible and with a disabled loo. Bingo! Or so I thought.......

On arrival, and whilst still in the car park, my only thought was, 'Oh fuck.'

The disabled parking spaces were at the furthest end of the car park from the 'disabled access' and the pathway was blocked by those huge industrial skip type bins. So we had to park near to the 'disabled access' in a normal space which does not allow enough space for you to open your door wide, another 'need.'

So then to the top of the slope......the so-called disabled access. I felt like an olympic ski jumper, staring down a run so steep. If you weren't disabled at the top, chances are, you would be by the time you reached the bottom, in a scabby broken heap. Feeling invincible, and with my mind screaming that I needed to talk to the manager or manageress about their access, I thought 'Fuck it.' And let go of my wheels. I know I've never moved so fast, which is not so great when your hands are your breaks. As I neared the entrance, I was greeted by another bloody obstacle.

The door.

It was big, and looked heavy, and was found to be heavy, with a handle up high, it opened outwards, so towards you, not easy when I can't just step backwards, and I had to negotiate all this on an upwards slope with a bloody door mat on. Driven by 'gggggrrrrrr' alone, I got in, and was greeted by a sales assistant asking if I was ok. 'Errrr no. Can I see the person in charge please?'

The person I saw was helpful, and was grateful for my feedback, got those massive bins moved, and offered me a wine. Sounds good, but then......

My mum had booked a table in the bar. Our table had been moved into the restaurant. Down two steps. To compensate for this, a ramp had been placed over the steps. Small compensation though, as it was another steep slope with a lip at the top and the bottom, which I couldn't negotiate independently. Being in a wheelchair is bad enough, let alone when you can't do it independently. It really ups the spaztastic feeling.

Aah but what of the disabled toilet? The toilet was fine, but getting to it was not. Up that bloody ramp, which I had to ask for help with, through the bar, negotiating tables and people, through another doorway, that took my knuckles off, with another heavy door that I needed help with. To strip it down to it's basics, I had to ask for help to go to the loo. Like a child. And incurring injuries on the way. Brilliant.

To get to the car I had to go down a different, gentler slope. But oh, it had a kerb at the end. I know I can get down a kerb, but not everyone can. And why the fuck would you design it like that anyway? And me negotiating the kerb gave rise to worried looks on the faces of the onlookers, which was kind of priceless.

So this got me thinking on the journey home. People are not aware, not truly aware if they have had no experience of disability. And I mean first hand experience. This is what is needed. In schools. In workplaces. Restaurants. Shopping centres. Everywhere that able bodied people go.

Until able bodied people experience disability for themselves, it's all supposition about what is truly needed. Until the world is equal and inclusive, there stands to be winners and losers, the included and the excluded.


I do not want to live in that world. It's no good for anyone.

Going out is a bit like this.....but without the awesome skills.

For mobile/tablet readers click HERE for the link.

Sometimes there is a lull in my posts. Sometimes this is because I'm busy. Sometimes this is because I'm finding it difficult to hit on a topic. Sometimes it's because I feel rough. Sometimes, like now, it's because of all three.

This time, whilst feeling rough, I spent my time with my new and oh-so-beautiful acquisition, a book called Letters of Note. A truly beautiful compilation of letters that will give rise to every emotion known. I am not ashamed to admit that one letter, 'Our Frank' had me weeping. I remember Frank. And I remember the horror of the Lockerbie bombing that alerted me to his presence.

The letter describing a mastectomy performed without anaesthetic.....can you imagine? Letters of all kinds furtively reside within the hard covers, waiting to be read, waiting to be imagined, waiting to be felt.

This week was a week that introduced me to reads that made me feel, really feel. One such read was in  The New Yorker, and was a piece by Ariel Levy called Thanksgiving In Mongolia. I've put a link so you can read it for yourself.

http://www.newyorker.com/reporting/2013/11/18/131118fa_fact_levy

As long as I'm feeling empathy, and keep searching to share the experiences of others, I know I'm still alive. And for that I'm grateful.