Avril O'Reilly, Writing, Reading and Life with MS.

Recently, MS Ireland caught up with author Avril O’Reilly.  Avril, who is living with MS and has penned books such as; 'A Fairy in the Family', 'Siog sa Teach' and 'Kathleen the Communion Copter' amongst many others. Avril, who is supporting this year’s MS Readathon, spoke to MS Ireland about her love of books, reading and her life with MS.

Tell us a little about yourself?

I am an auntie to five lovely children and I shamelessly put them all in my stories - not always remembering to change their names. My working life was spent as a photo editor in London working on newspapers.  Having that job allowed me to work on an unusual children’s book illustrated with photos.

Tell us a little about your love of reading?

I cannot get my head around all the different stories that are happening all around us on this planet.  Once I visited New York and looked down from the Empire State Building at New York at night. I remember thinking every spot of life is someone living a life and there is a story going on. Books let me look into those lives.

Avril O'Reilly 2

What made you want to start writing books?

My family.  When I look back I was always making picture books. In my family home in Cork our childhood possessions were not thrown out and I found a book called 'Og' which was drawings of my baby brother, David. Three of my siblings posed as Cinderella in a photo story that I shot.  Does anyone remember flashcubes? My day job was in photography and I decided to do a book with photos as the illustrations.  Now I am back writing about my family again and my next book will be about 'The Aunties' (who often get a hard time in books).

MeandBookCharacterSam

What books have you written?

The books I spent years on were 'A Fairy in the Family' and 'A Fairy in the Family Again'.  

Living in London I got it into my head that I wanted to create a book with a black girl on the cover.  Back then there were very few. At the time I had a good job and I hired models, make-up artists and photographers to create the pictures. With Photoshop we could put characters on the same page even if the shoots were years apart. The little girl on the cover was photographed ten years on playing the part of her own babysitter.

Unlike other authors I have real life human beings as my characters. Last month I had a reunion in Brixton of the cast and crew. The schoolboy in the photo is a teacher now!!

My other books are set in Cork. They are all about a little girl trying to find a dress for her First Holy Communion in Cork despite various obstacles.  She is surrounded by half-hearted Catholics, Tommy and Teddy her annoying baby brothers and distractible parents. I tried to imagine what the event must look like to a very uncynical child. I recorded it as an audio book too. Having MS I am very aware that I am lucky to have a voice that works!

Your experience of being diagnosed and living with MS?

Looking back the diagnosis took a long time. Vague symptoms like dizziness were hard to pin down. My physio spotted that my walking was not right. She told my GP who sent me to a neurologist in St. Vincents who scanned my brain and spine. He drew a sketch of my spine and talked about lesions and MS. Dr Google had given me far worse diagnoses so MS was a relief!  It is not the worst.

Denial would be a good word.  When I first picked up my box of Copaxone and saw the row of needles, I politely told the pharmacist that she could put them back in the fridge and left. Needle coward. 

I supposed I was in denial about being disabled. Having worked and commuted all my life I had to accept that the fatigue would not allow me to travel up and down to Dublin. We all accept things at our own pace and I would say I am “differently abled”.  Employability Ireland found me my current job and I work from home online. My boss knows that I sometimes work late to make up for being hit by fatigue during the day

How did your life change after your diagnosis?

I am not as high-powered as I once was. I have a theory that there is a particular kind of bullying that triggers my MS. It’s not just stress, it is a kind of witch-hunting that can happen in big companies - a feeling of being whispered about and in danger.

The first time that it happened I was working in an advertising agency in London.  I must have had optic neuritis. The Harley Street consultant who looked at my brain scan decided not to mention MS. 20 years later when a new symptom appeared I was told that the doctor may have believed that my attack was a one-off. He spared me two decades of worry.

These days I avoid situations and types of people who are not kind to me.  I used to walk all over London and for a while I dreaded the phrase "Let's go for a walk".  But now  I'll ask people "Can you give me a link?" for the difficult parts - I sit down a lot.  Much as I loved working for newspapers the hours and commute stop me from going after a job on an Irish paper. I make life easy. I can still draw and colour most days with magnifying glasses.

Avril O'Reilly

Have you been in contact with MS Ireland and our services?

Where I live is very rural so I use the Information Line (1850 233 233) a lot to check things like whether or not I can have the flu vaccine. I find it really helpful and its just a quick phone call away. 

I will be supporting the Readathon as it is so good that kids can hear about MS in the context of something fun like reading. I hope that children will pick up messages like how amazing the drugs are for MS. I have a drug now that helps me walk and that’s a nice topic for one of my 'Auntie' stories.

Sign up to the MS Readathon today at https://www.msreadathon.ie

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