A Letter A Day… Alasdair

I’ve been asked by people from different parts of the world if there is a way they can read the 32 diagnosis letters I received earlier this year as part of the Step Inside MS project. In response, I promised that once the exhibition had finished its summer tour of South Lanarkshire libraries I would post them all on here.

I thought a nice way to do this would be to post a letter a day starting on September 1st, in order that each letter receives the focus it deserves. My plan is to do this alphabetically, so today I’m posting Alasdair’s letter.

Thanks again to everyone who took part in the project and to everyone who supported it!

Alasdair’s letter

Letter writer Steve and his wife Caroline visit the Step Inside MS exhibition in Larkhall

One of our letter writers, Steve, his wife, Caroline, and their Westie, Emily, recently paid a visit to Larkhall library to see the Step Inside MS exhibition. Steve was kind enough to send me a blog post, which you can read below.

I was very moved by his description of their response to the letters and I share his hope that steps might soon be taken to improve the experience of being diagnosed.

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A visit to the Step Inside MS exhibition

As one of the contributors to the “My Diagnosis” project started by Gillian, I was pleased that myself and my wife were going to be able to see the exhibition on our annual trip to Scotland.

Half of the letters had been moved to Larkhall library which was an extremely convenient location on our journey to Fife. We arrived in Larkhall mid-morning and, in spite of being warned that the library had moved, I have to confess that we did have some difficulty locating it. Several trips up and down the main street and a number of conversations with strangers later and the library was successfully located well within the hour! Seemingly sign posting is still in its infancy in this part of Lanarkshire!

The letters have a prominent spot in the library and more importantly there were some very nice chairs so we could read the 16 letters in comfort. The library staff, Jean and Malcolm, could not have been more helpful – making us a cup of tea and providing shortbread – well, it is Scotland. More importantly they let us bring Emily, our Westie, in from the car.

We expected to nip into the library, read the letters and be on our way. What neither of us had anticipated was how moved we would be by the letters. The hope and positivity that came through was so strong and the determination to make the best of every day was truly heartening.

Anybody taking the time to read the letters can’t help but come away with more knowledge about the disease and how it impacts on people’s lives, but they will also discover that although it is life changing, more often than not, MS makes us into better people and that life goes on.

Sometimes, as in the case of Alasdair with PPMS, it is downhill without any remission but he has raised 3 children to adulthood and I’m sure they are as proud of him as he is of them. For Jenny in New Zealand who was told by her doctor ” that having children was out of the question” we hope you send him a letter every year at xmas detailing all the great things your kids have done at school.

The professionals are the ones who need to read the letters to learn how strong the human spirit is. It also brought home to us how helpful it would be for the newly diagnosed to be put in touch with not just an MS nurse, but also an MS veteran i.e. someone who has lived with the disease for a period of time following their diagnosis and who can understand better than any counsellor or helpline volunteer the fears of the newly diagnosed.

It would be nice to think that the way people are informed of their diagnosis has evolved and improved over time but there is still room for a lot of improvement, especially in the length of time it takes for test and results to be obtained. When I was diagnosed with MS the only other person I knew with it was my wife of 24 years who had been diagnosed in 2001. People always say how positive and optimistic we are but after reading the letters we know we aren’t the only ones. We are going to live our lives and have highs and lows like everybody else and our lives may not take the route we had originally planned but we have all found a way to make the most of what we have every day. We feel that we know each of you and are proud to stand alongside our fellow MSers.

On the move!

The Step Inside MS exhibition is on the move. It has begun its summer tour of South Lanarkshire libraries and can now be viewed at both Blantyre Library and Cambuslang Library.

I met Head of Policy and Communications for the MS Society Scotland, Rebecca Duff, at Blantyre Library last week. She explained that she wanted to visit the display as she was interested to read the powerful letters for herself. Image

In addition, there is now a Step Inside MS display in East Dunbartonshire at the William Patrick Library in Kirkintilloch. It will be there until Saturday May 31st, so if you’re local and you’d like to find out what it feels like to be diagnosed with MS, be sure to get along.

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Many thanks!

Gillian

 

Step Inside MS photographs

I was at Hamilton Town House library today to take some photographs of the letters on display. I was excited to go back because after the launch the exhibition was moved to a busier area of the library. I know I’m biased, but I think it looks great.

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I also had the chance to meet someone from MSTC (MS Therapy Centre Lothian), who had travelled through from Edinburgh to see the exhibition. It was lovely to speak to someone who is so enthusiastic about the benefits of therapeutic writing.

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Please come along and read these powerful letters!

Step Inside MS Launch at 6pm on April 17th

Please come along to the Step Inside MS exhibition launch at 6pm tonight at the Townhouse Library in Hamilton.

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There will be a display of 32 letters written by folks with MS from Scotland, England, Wales, The Netherlands, Australia, New Zealand and America. These letters describe the experience of being diagnosed with MS and are definitely worth reading if you know, or love, someone with MS as they provide a powerful insight into the MS journey.

If you come along you’ll also have the chance to hear Carla

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and Craig

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reading their powerful letters and you’ll be able to speak to some of the letter writers.

We look forward to seeing you tonight!

Gillian x

Step Inside MS

Please come along to the launch of the Step Inside MS exhibition at 6pm on Thursday 17th April at Hamilton Town House Library. The purpose of the exhibition is to raise awareness of Multiple Sclerosis and to help others understand what it’s like to be diagnosed with MS.

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The launch will be an opportunity to read the 32 letters on display, meet some of the letter writers and hear about their experience of being diagnosed with MS. We would love to see you there!