Step Inside MS Exhibition

I spent yesterday morning at the Town House Library in Hamilton preparing display boards for the Step Inside MS exhibition. The exhibition is due to run from April 14th until May 19th in Hamilton and will then tour other libraries in South Lanarkshire. From May 14th until May 31st, a parallel exhibition will run in the William Patrick Library in Kirkintilloch.


My hope is that this exhibition will allow others to experience a little of what it’s like to be diagnosed with Multiple Sclerosis. Most people know someone, perhaps even love someone, with this condition, but may not feel comfortable asking about it for fear of causing upset or offence. Hopefully this display of letters will offer a valuable insight and will help to increase understanding and awareness.

The Step Inside MS exhibition has come about as a result of an editing and publishing project I’ve had to do for my MLitt in creative writing at Glasgow University. I thought it would be a perfect excuse to achieve a couple of things that are important to me: raise awareness of MS and in particular, how people are diagnosed, and encourage folks with MS to write, as doing so can prove very therapeutic.

I put out a call for letters via email, facebook and twitter at the end of January 2014. By the closing date of February 28th, I had 32 letters. This fantastic response was thanks to the MS Society Scotland, the MS Society UK, friends, family and strangers who all got involved to help publicise the call for letters.

I chose to ask people to write letters because I felt it would open my project up to those who, like myself, might not see themselves as writers in any grand sense. Also, it’s been my experience that most people are happy to write letters and everyone enjoys reading them (well, I do).

Another choice I made was to ask people to write about their experience of being diagnosed. I could have asked for letters about a different aspect of having MS, but as a volunteer self-management trainer for the MS Society, I’ve learned that the starting point of someone’s journey is of upmost importance. It seems that often, the way in which the news is broken has a profound effect on a person’s ability to manage the road ahead.

I’d like to take this opportunity to say a special word of thanks to Sarah Liddell and Scott Broadfoot from Hamilton Town House Library; to Hannah Maunder from the MS Society Scotland for her generous support; to my tutor, Zöe Strachan, for her invaluable advice and guidance; to artist Barrie Herbert who designed and painted the Step Inside MS image that is being used to publicise the exhibition, and finally to all the wonderful letter writers who took the time to get involved and who have made the Step Inside MS exhibition possible.


If you’re local, please come along and read these powerful letters.

Many thanks!


One week to go!

photo-14I’d firstly like to express my gratitude to those of you who have written to me about the way in which you were diagnosed with Multiple Sclerosis. I’ve had 22 letters and I’m truly grateful. If there are others of you out there still thinking about writing a letter, please do! I’d love to hear about your experience also.

The letters have all been powerful and I thought it might be useful to share some extracts from the first two I received, in order to illustrate this.

On the 26th of January I received a letter from John, which said, ‘The young man – so many men are young compared to me these days – seemed to be excited by the fact that he’d identified my ‘issue’, but equally as embarrassed by having to tell me that those dark lesions on my cerebellum indicated that I had officially entered a whole new world.’ John finished his letter by writing, ‘Grey days brighten with the right support.’

That same day I received a letter from Y. I’ve picked a few extracts from it to give you a flavour of her experience. She wrote, ‘Very calmly, I asked her what she was thinking. ‘MS,’ she replied. I felt nothing. I closed down. She referred me for an MRI – another long wait…   The MRI went by in a blur of emotional (rather than physical) numbness. An hour later, when my aunt and friend had popped out for a coffee, I was called into the consulting room. A different, Eastern European registrar showed me my MRI scan. I looked at some white patches, like mould or lichen on my brain scan. ‘We believe you have MS,’ he said in a thick accent…   I am now a different person, four years on. I accepted the illness as part of me, eventually…   I now live a richer life ; poorer, financially, but so much richer in terms of compassion for myself and others.’

I believe that all the letters I’ve received offer those who don’t have Multiple Sclerosis an important insight into what it’s like to go through the diagnosis process.

Many thanks!


Please get involved in my MS letter writing project. :-)

Tasha says, ‘I’m not getting up until you write a letter.’


I’m doing an editing and publishing project for my MLitt in creative writing and I’m looking for volunteers. Please write me a letter telling me about your MS diagnosis and a little about yourself (up to 800 words) and send it to .

Many thanks!


Call for letters!

photo-14I’d really appreciate your help! I’m studying for an MLitt in Creative Writing and as part of my course I need to do an editing and publishing project. I’d like to base my project on the way in which people find out they have Multiple Sclerosis – how the news is broken.

Personally, I was first told I probably had the disease by a neurologist who visited me about ten hours after I was admitted to hospital in the middle of the night – having phoned NHS 24 to say I couldn’t feel my feet or my legs. After taking my medical history and examining me, she said, ‘I’ll be amazed if you don’t have MS.’

I didn’t have a clue what MS was. In my shock (I’d thought I had a trapped nerve), I couldn’t even think which disease the initials referred to. It was then another two months, an MRI and a lumbar puncture, before a different neurologist sat me down in his office and gave me a diagnosis of MS.

Our diagnosis stories often go untold and I think that’s a shame. I’d like to hear the stories other people have to tell about how the news was broken to them. I’m therefore asking for volunteers to write letters to me, describing the way in which they were told they had MS.

This is where YOU come in! Please write to me in the format of a letter… Dear Gillian, I am writing to tell you about the way I was told I have MS…

I’d love if you could also write a little bit about yourself – before and after diagnosis – but I would ask that your letters are no more than 800 words long.

I understand that some people might want to remain anonymous, so if you’d rather, simply signing off with your first name would be great.

I’m not sure how many letters I’ll receive, which makes it a little difficult to plan my project. If (fingers crossed!) there’s a great response, it might not be possible to publish all of your letters in this small book. If that happens, I plan to organise an event where all the letters can be displayed.

My hope is that by the end of this project, with your help, we will have created a book of letters that brings to life the people behind the statistics. If you’re interested in participating, please email a copy of your letter to me at  before February 28th.

Many thanks!


Walking on Fire

After such a long blogging pause, it seems that the best approach is to dive back in by writing posts about incidents and events from the last year. I can’t promise that these will be in chronological order, which may cause something of a problem for my OCD-inclined brain.

The first thing that comes to mind as blog-worthy is the Firewalk that the MS Society Scotland organised in Glasgow Green on September 30th last year. It was an apt choice of fundraiser as one of the possible symptoms of multiple sclerosis is dysesthesia, which can manifest itself in a burning sensation, often affecting the feet. I’ve included a link to an article on it, in case I’ve piqued any interest:

I can attest to the very real pain that dysesthesia produces. In my own case, at times, I could swear some malevolent creature has thrown acid on my left hand. Luckily, I’ve learned how to distract myself from this form of nerve pain, rather than use any of the drugs that can be prescribed to help as, for me, they don’t.

Back to the firewalk, where people had to walk on actual fire (wooden embers burning at 1200 degrees fahrenheit, to be precise). One of these foolhardy lunatics was my husband. He thought it would make a nice gift for our wedding anniversary, which is earlier in September. He was right. I can easily say it’s the best anniversary present I’ve ever been given – much better than slippers or an alarm clock…

In the run up to the event, Ronnie did some serious fundraising which included a haranguing email with a rather large distribution list and a link from his linkedin profile to his justgiving page – technology is a wonderful thing – and thanks to the great generosity of family and friends he was able to raise over £4,000 for the MS Society Scotland.

The actual night of the event was a bit damp and dreich. So much so, we were a little worried that the much-advertised fire wouldn’t survive the Glasgow weather. That was, until we saw the flames eat up the wooden pyre that had been constructed in the Beer Garden outside West Bar (located in the iconic Templeton Building). Those flames defied the elements and created one monster bonfire. Luckily for the firewalkers, they were all safely ensconced behind closed curtains in the adjacent building. I’m not sure any of them could have walked on the burning embers, if they had seen the fire that created them.

It seems that while we were all getting a little anxious outside, they were inside whooping and hollering at the very lively ‘mind over matter’ training session which was designed to prepare them for the challenge ahead. When they finally appeared, they looked like pumped up members of some fire-worshipping cult. It must have been effective though, because they all achieved their goal.

Despite our little group of cheerleaders producing lots of noise, we failed when it came to capturing the event for posterity, only managing a couple of blurry photographs between us – Ronnie moved pretty darned quickly. However, I did find a video clip on YouTube that was clearly produced by someone much more organised and talented than us.

My crazy husband is third to walk across the burning embers.