It’s One of Them: living with spinal muscular atrophy

New book It’s One of Them is about living with spinal muscular atrophy, something that can be hard enough to live with, let alone when you’re in an abusive relationship. We talk to the author, Grace Saunders, about her life, her relationships, her disability and how they all influenced the book. 

I turn 45 this year and that’s quite an achievement for somebody like me. People moan about turning 40, I didn’t complain once, I embraced it!

I’m an ordinary middle aged woman, a mum and a wife. I have a nice home, pets and a car. I wrote my book for a couple of reasons; the first reason is it’s been great therapy, probably better than any counselling.

Secondly, I have a story to tell, and hopefully it will help others, whether they have children with my disability, or if they suffer from the same condition as me, or indeed have been through the traumas I have – I think there’s something here for a lot of people.

I was born with genetic condition Spinal Muscular Atrophy Type 2. I also had a brother two years younger than me with the same condition who was always the stronger one when we were little. Sadly he passed away at the age of 30. I never in a million years thought I would ever out live my brother.

From growing up in Hertfordshire to living independently in Coventry, I have now achieved what I wanted in life. To be a wife and a mum is all I ever wanted, and I have that now, although I didn’t necessarily do it in the right order. I never ended up going to university, running a business or helping the community in any way, I just wanted to be a wife and a mum like a normal woman, and I succeeded. I had to go through a lot to get here, but I did it!

As well as a mum and wife, I want to be an inspiration and show children with SMA that they have a future and can achieve things in life – it doesn’t stop you from doing anything. Drs tend to just go on about life expectancy to the parents with an SMA child, but I am living proof that we are living for longer these days with the right care and support we are living full and normal lives.

I had a fairly good education; I left school with C.S.Es and I left college with an Arts Foundation grade and a B-Tec in graphic design. I wanted to live independently in Coventry, which was so much harder than I ever thought it would be. I had to wait months for any kind of financial help towards my care, and had to pay my carers out of my own personal money, and that bled me dry.

I lived in an old non-accessible rented house for a year and then a friend’s flat until I was eventually offered a council bungalow of my own. Everyone has to start somewhere and it took time and patience to get where I am now.

I’ve had a few relationships; and I was victim to domestic abuse that went on for four years. But I eventually came out of it and it’s made me the strong person I am today. I did eventually marry my childhood sweet heart two years ago. We came full circle. It just shows, you never know what’s waiting for you round the corner. All I wanted was to be loved and for someone to understand and love me for me. I am now very content and happy.

My biggest achievement was having my daughter. I had spoken to a doctor a couple of years before falling pregnant and asked if I would be able to have children and I was told no. When I became pregnant almost 20 years ago I was determined to go through with it. It was very uncomfortable, I could only carry her till 34 weeks and then had to have her by caesarean.

But it was all worth it, holding your beautiful baby girl at the end made everything worth while. With the help of my carers and family I was able to raise my daughter on my own into the lovely women she has become today, and I am very proud.

I now live with my husband and daughter and have 24 hour care without many problems; I’ve now got the balance right. Trying to have a personal life and have the added pressure of carers in your home is at times frustrating, but it works just fine, it’s all give and take.

I am getting slowly weaker, I struggle more to do things. I get tired more but I have to look at it like, well I am middle aged so it’s something that comes with getting older. For a middle aged SMA woman I’m doing pretty well. I’m healthy, probably healthier than a lot of people in fact.

Being stubborn helps a lot I think, and I have a family to keep going for. Plus, what would they all do without me eh?! I’m not going anywhere yet, hopefully with the right medical advice and support there’s at least another 25 years in me!

I recently attended the National Hospital for Neurology and Neurosurgery in London to get checked out. I had their care at the beginning of my life and now, at the other end of my life, I wanted their care again. I want them to help me live for as long as possible.

I’ve tried and I am living the most normal life I can possibly live. I’m in the second part of my life now and it’s time to just relax and enjoy what ever life now throws at me. The expression; ‘It’s one of them’ is my attitude to life – you have to make the most of the life you have been dealt with and, to be honest, I’ve quite liked my SMA life!

By Grace Saunders

If you’d like to buy Grace’s book, It’s One of Them, visit Amazon.

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