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.

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