Saturday, 26 November 2011

Social Media & Me

I started my professional life after dropping out of art college at 19. After a 3 month stint in a local supermarket I knew that stacking shelves would never be taxing enough for me. My parents offered to pay for a secretarial course. I didn't want to be a secretary but knew that I had to earn a living somehow.

I landed my first job at a publishing company, which produced magazines and books for children. I was PA to the Editorial Director and spent 3 very enjoyable years there in colourful Camden Town.

When I started in 1986, I was using an electronic memory typewriter. Top of the range kit at that time! Then the Amstrad word processor came out and I felt very accomplished using that. I had no idea of the possibilities that technology would bring and how it would become my lifeline in the future.

My first inkling came a decade later in 1995. I was PA to Dr Michael Chamberlain,who was director of new media activities at United News & Media. He had an Apple Mac and showed me the internet and how to use email. I remember feeling excited about the internet's potential even though nothing much was going on at that time. 

I was a full time mum when I was diagnosed with motor neurone disease (MND) in April 2000. You can read my technology journey here. I want to expand on my use of social media in this blog because it has undoubtedly helped me to manage my illness. It has also enabled me to raise awareness of MND, an orphan disease with no treatment or cure.

After diagnosis, when I had accessible computer access, I scoured the net, desperate to connect with other sufferers. I became a member of Patients Like Me and immediately felt supported. It was a great relief to know that I was not alone with this disease and I felt comforted. I learned about MND management and equipment from other sufferers. It feels good to be an empowered patient! I've even taught my doctor a few things. Now I spend some of my time sharing my experiences on various MND forums. As a long term survivor of MND (the official prognosis is 3-5 years) I want to help others. I've recently discovered and would like to collaborate with them to see MND featured on their site.

I love that I can share information through my website. I'm also an avid tweeter and facebook user. When I appeared in Sarah's Story I used both platforms to show the ad. I won the Mashable 2009 web award for Sarah's Story, in the category of Social Media Ad Campaign. The fact that I won through the votes of people on both social networks really highlighted the power of social media to me.

There are great MND communities on both twitter and facebook. We share research news which gives hope and keeps us upbeat and positive. Without social media, everyone would sit in isolation and feel hopeless. I actually find tweeting very cathartic and can voice frustrations as well as share good moments. I've made connections with wonderful people all over the world. Some have helped me to fundraise or raise the profile of MND. Life with a terminal illness is a veritable rollercoaster but social media has made everything much easier and more enjoyable for me.


  1. Welcome to the Blogosphere, Sarah and congratulations on an excellent start. Best wishes to your family and friends.

  2. Actually I see you have been blogging for some years but I still congratulate you on this latest post.

  3. Thanks Jane, very much appreciated! Writing is quite tiring for me, so anybody who actually likes my ramblings makes it worthwhile xx

  4. You really do write beautifully Sarah, another excellent piece. I'd love to hear more of your early years, what you got up to, your musings and all, the life and loves of Sarah E. I wonder why you dropped out of art?

  5. Sarah, This is a wonderful post, and very beautifully written.

    I'm so thankful we crossed paths through social media, and marvel at how you inspire so many people to live life, no matter what obstacles fall into one's path.

    Some day I wish we could meet in real life, but in the mean time, I'm happy to be connected with you here and on Twitter.

    Keep writing. Stay strong. And I hope you can continue to inspire and show hope to others.

    Warm regards,


  6. Thanks so much Terri. Your support really encourages me! I've also learned a great deal about social media from you. I hope that we will eventually meet up too. In the meantime I'll catch you on twitter, Linkedin, blogger etc!

    Best wishes


  7. Thanks for your kind comments Simon! I think I wasn't ready for art college, although I had some talent. Looking back, a journalism course would have been more suitable for me. No regrets though!

    All the best


  8. Thanks Richard! Hope to meet up soon to show you eyegaze and help with your IT information website.

  9. Hi, I also have PLS and even for me it was quite a shock to see the speed of going from being totally normal to being bound to a wheelchair. PLS is such a cruel disease I guess it's because we are fully aware of what we can no longer due and that the future looks even worse. In my case the loss of my voice is almost as bad as the loss of the use of my legs. But it is so much better than ALS where there is virtually no hope at all, so I am not complaining. Thank you for making a film that shows the ravages of a motor neuron disease.

    Sandy Ciresi

  10. Sandy, there is always hope. I've been living with MND/ALS for 12 years now. Stephen Hawking just turned 70. Life is good, despite disability. Never lose hope!

    1. Sarah: you are wonderful. I have been in touch with you many times. Like you I would like to help other people with this disease. MND. I have got the disease. 36 years. This Christmas! I am approaching my 80th birthday in February! I intend to have my second book, published on that date! "Against the odds – living with MND." Obviously – the book was written with voice recognition. I compliment you on your system of writing: Eyegaze! Keep well my friend. Andy ~