Thursday May 04 2017 10:30 AM
This week Joan Jordan shares her hopes and is calling on your support to produce a book for people living with MS.
A lot of the things I do are based on hope. It’s the primary reason I signed up for a clinical trial. I hoped that my MRI data and blood samples could contribute towards finding a cure for MS. It’s why I write blogs for MS & Me. I hope that I can help others in a similar situation see that they are not alone and that we are stronger together. It’s why I applied for funding from the Irish National Lottery to publish a “HuManS” book in 2017 for newly diagnosed people.In the Louth Branch, we produced a single copy of a selfie book on a limited budget to mark World MS Day 2015 and the hope is to publish on a national, digital scale in 2017.
Minister Harris has granted me €5,000 to make this hope a reality. I thank him for his vote of confidence. I pledge that I will do all I can to produce the book I wish I had been given when I lay post-diagnosis in a hospital bed in 2010. Something that could have given me an indication that life with Multiple Sclerosis can and DOES go on. I have completed a photography course and have learned how to make and edit videos. I have started to take pictures for the book at locations where people with MS work- as this takes a while to get clearance from Human Resources. To take part: I need to take your photo and ask you your name, when you were diagnosed and what you would say to someone who has just been through it. I hope that you will consider being a part of the book! I plan to launch the Facebook page for the project on World MS Day at the end of May and you can find out more information then.
At the start of 2017- I read a post on Facebook detailing some of the positives from the previous year. Scanning through the comments, I pondered about my best moment of 2016. Getting a letter with a Dáil Eireann water-stamp informing me that I had funding to make the book happen was a bitter sweet moment. I had just returned from a tough day in hospital when it arrived. It was a day when I felt hope had evaporated and then something unexpected happened to rekindle the remaining dregs. Maybe it wasn’t the best day but it was a day of mixed emotions where hope emerged on top.
Barack Obama said that “The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” The alternative is to give up and I’m not ready to do that.
I hope you will help me produce the “HuManS” book and share your story of living life with Multiple Sclerosis in Ireland with people who have just been diagnosed.