Hamish says, ‘I’m not getting down until you write a letter!’
I’d love if you would help me by writing a letter (max 800 words) describing yourself and your MS diagnosis. Please see the post below to find out more.
I’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 email@example.com before February 28th.
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: http://suite101.com/article/what-is-dysesthesia-a252111.
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.