We chat with Steven Koutsodontis, author and Intake Officer at BSL NDIS about his journey with MS and the inspiration behind his self-published book, A Conversation About Multiple Sclerosis with My Family.
Can you tell us a bit about yourself and your journey with MS?
When I was 16 years old, I was dealt what I would describe as a wonderful gift one beautiful afternoon. This involved debilitating symptoms of fatigue, double vision, numbness, and loss of strength to the left side of my body.
I was completing year 9 in high school and had this mess to deal with. My parents thought it best not to reveal the diagnosis to me and said it wasn’t anything serious or life threatening – “inflammation of the nerves” was how they sold it to me. I would take weeks away from school to get better by resting and taking oral steroid tablets. After a month the symptoms would disappear, but I was not the person I used to be strength wise.
It wasn’t until I started university that my diagnosis was revealed, which came as no surprise. Multiple Sclerosis (MS) is a potentially disabling condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves.
I’ve had times where I have felt low and vulnerable, as well as many wonderful times. I am married to a beautiful person named Angela and we have two amazing children, Irena and Michael.
I have completed a Bachelor of Applied Science in Medical Laboratory Science majoring in Microbiology and Immunohaematology, I then went on to work as a Microbiologist for leading pharmaceutical companies over the past 20 years.
Now, I assist in supporting people with the NDIS as an Intake Officer. As I too have a lived experience with disability it was an easy and worthwhile choice as I can offer reasonable insights.
I’m passionate about helping others understand MS better and supporting people with their diagnosis.
How did the idea come about to write A Conversation About Multiple Sclerosis?
The biggest inspiration to write this book was my children. To explain to them why their dad sometimes can’t do what other dads can. For example, when I play soccer with my son, the game is really one sided. As I cannot run nor kick the soccer ball well, it is a bit embarrassing being overwhelmed in soccer by your 9-year-old son. I cannot ride a bike with my family due to my poor balance.
There are other examples as well like when I fall suddenly, what causes that they may wonder?
It inspired me as a father to write this book about MS for my children and for other children who have a parent affected with MS to understand the condition better and that it can be managed well.
I hope it can provide a positive outlook upon a misunderstood and poorly documented condition.
Tell us a little more about the book.
It’s about a father who has Multiple Sclerosis (MS) and is narrated as a dialogue between a father and his family. For children who have a parent with MS, it provides an example of what it is like to live with them and reasons why this is the case.
You mention the book is set out as a conversation between a father and his family. Why was it important to tell the story this way?
I told the story this way to provide children and families a real example of what life with a degenerating disease is like. More importantly it’s told this way to illustrate the values of honesty, hard work and positive outcomes. MS is often depicted as a miserable disease, but the love and support of your family is the best medicine to overcome any illness.
What are some of the messages you hope people will take from this story?
Living with a chronic illness is difficult. The word chronic tells you that it is there forever. As I mention in the book it is like another member of the family that we must attend to.
My children did not choose to have a dad with MS. My wife was well aware of me having MS as it was the first thing I told her when we met. This did not stop them having a life full of love and discovery.
The messages I wish people take from this story is that we are all born into this life with different outcomes. Some are born to have challenging circumstances through no fault of their own. It does not mean that life stops as life is filled with so many miraculous presentations. Never give up.
Steven’s book, A Conversation About Multiple Sclerosis with My Family, is available now on Booktopia.