Adapt and write, living with MS

Written by: Lorraine Johnston, Children's author

Published: 13/01/2021

Children's author Lorraine Johnston imparts her experience of the onset of illness and how she has rebuilt her life.

It was usually scaffold inspections one day, delivering IOSH Middle Management training the next. Early starts began with making my son’s pack lunch for school and getting on a 7am flight to London, eventually getting back home just after dinner.

Weekends were precious and evening story times and shenanigans were essential parenting to alleviate any guilt for such long working hours.

Pond dipping and watching tadpoles on a Sunday morning with my lad and catching up with reports and risk assessments in the evening after his bedtime.

I wrote guidance and policy to keep up with new or amended legislation during the day and assisted with homework and parent’s night in the evening.

Twice a month, I would volunteer as first aid officer attending public events such as T in the Park or at The Glasgow Royal Concert Hall.  As a defib-operator/trainer I found handling the scene of accidents and incidents was when I triaged and prioritised the best.

In short, I was always mum, wife, employee, volunteer and occasionally, life saver.

And then I had my 40th birthday. It arrived with an unusual eye twitch first thing in the morning. By the time I was having my birthday dinner with my family, the twitch had worsened and spread down to my lip. My cheek had a strange sensation as if a warm, damp facecloth was pressed against my face.

Soon, I was diagnosed with Multiple Sclerosis.

I immediately threw myself at work and undertook a massive fundraising project to raise funds for Habitat for Humanity in New Orleans, in the aftermath of hurricane Katrina. Everyone said how amazing this was, which couldn’t have been further from the truth! What I was actually doing was hiding. I was doing a ‘La La La – I can’t hear you!’ A two fingered salute to my diagnosis.

As long as I continued to work and do all the things I normally did, then nothing would change or affect me; right?

I won’t bore you with all the stages of denial, grief and loss etc, but I worked through them all.

MS pulled me up short and showed me how things were going to be. So, I had to get with the programme. I learned quickly that my MS diagnosis wasn’t going to change, so I had to change my approach to having it.

Pre-diagnosis, I had little time to myself. When I did, I filled that time with snail races and driving my son to clubs and parties and playdates.

MS hasn’t given me many gifts, however one precious gift it has given me, is time. I slowed down. I was grounded, physically and mentally. I felt stuck for a while, but not long.

I started writing in October 2011. My first children’s book was published in Oct 2012. I organised my first book signing to be on my birthday to re-claim that date as something to celebrate instead of marking time with how long I have had MS for.

Now, on my birthdays, I can reflect on how many years it’s been since I found my love of writing and it has helped me to feel useful again, which is really important for me to have a sense of purpose.

My children’s books also raise funds for Scottish Charities. I gifted ‘Whit of Whiteleys Wood’ with 100% of proceeds going to Whiteleys Retreat. ‘Later Tartan Gator’ raises £1 for every book sold to Scotland’s Charity Air Ambulance.

My diagnosis required recognition that I needed to change and adapt.

I chose to adapt and write and to write happier endings to my story.



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