Hey I’m Emma, I am wife, Mum, Business Owner, Charity Founder and Carer for my amazing husband Leigh who is an amputee and has a disintegrating right leg.
My husband lost his leg in January 2008, six months after we met and after a simple operation went horribly wrong. He was 25 years old, a party loving, hard working young man. We had had an absolute ball getting to know each other, we were inseparable and we loved working hard and playing hard. We did a lot of travelling in just 6 months and so when on 28th January he became seriously ill I knew there wasn’t any place else I wanted to be. I was finishing my master’s degree and Leigh’s dad said to me “If you need to go, go do what you need, Leigh won’t want to hold you back” to which I replied ‘He won’t hold me back, he is the one for me and I want to build a life with him.’
In our naivety we believed that once Leigh was walking that everything would return to ‘normal’. What in fact has followed has been ten years of ongoing operations or procedures for Leigh (2-3 a year) with bone spurs, neuromas, infections. We just didn’t have a chance to breathe and somehow through all of that I completed my Masters degree at Leigh’s hospital bedside with him helping massively. We moved to Suffolk, started a family, created two businesses, lost Leigh’s Dad to cancer (who had been a massive influence in our lives) and we tragically lost our baby boy Bobby, which devastated us. But we also got married, founded a charity and managed to have some magical, happy times together. So although it has been the toughest time, we have held on tight together, terrified of what might be round the corner but we have also ensured we have made the most of everything, for we know that both life and health are precious.
Until you have experienced loss of life or health problems it is impossible to imagine the pain, fear and concern you live with. Leigh and I were young at the time of his amputation and our way to deal with it was to not really accept it had happened and just get back to ‘normal life’. Leigh tried to return to his printing job but he had nasty falls and simply could not do it any longer. He completed web design courses but struggled, as every time he made a breakthrough he would need another operation, have a fall or become seriously ill. It is heartbreaking to witness someone you love in pain whilst struggling to regain his life. Almost eleven years on Leigh is still struggling but we think we may be at the end of a long prosthetics battle and finally getting the support that he needs for his full leg and to prevent amputation for as long as possible.
I never saw myself as a Carer and Leigh is someone who never wants to be seen as disabled. He didn’t want many people knowing that he was an amputee. For years, we held onto the pain and struggles thinking ‘Come on we can get over it – we can just get back to ‘normal’. That word normal is so detrimental as I don’t know anyone who has a normal life. The stresses of caring for Leigh and witnessing him enduring everything caused me to fall ill, and I was admitted to hospital. At this point my world collapsed as this meant I could not be there for my family- any Mother’s absolute nightmare. I returned from hospital but struggled to provide care, so I took a step that horrified me at the time and I phoned social services. I said ‘I don’t know what I need but I need something- can you help me?’ At the time I wasn’t used to asking for help; I felt ashamed and a failure who was unable to look after my family.
But I feel I have the support I need now, it feels like I am winning.
Once we started letting go of being ‘normal’ and we started meeting other amputee families through a Facebook group we had started called STEEL BONES, we felt huge relief! STEEL BONES is now a voluntary charity and has greatly helped Leigh and I work through the disability and find our place in the world. It has helped us to support our children and show that our family is not alone; we are different but there are other amputee families who know what we are going through. And we get so much out of supporting and working with them
We had always thought asking for help was a weakness. But asking for help and meeting others like our family has been the greatest gift to our life and has saved us. I remember saying ‘Oh I’ve got enough friends, I don’t need anymore’ and yet that’s exactly what I needed- to surround myself with other Carers so we didn’t feel so isolated and alone. This was far from a sign of weakness but strengthened us to battle on each day!
I always used to underestimate what we had endured, and one great friend once told me: ‘Emma whenever you start saying ‘ I should do this’ or putting pressure on yourself it’s important to take a step back. Just take 1 minute to do some deep breathing and catch hold of yourself.’ I still struggle to do this, as Carers our minds are constantly busy BUT if we do not look after ourselves the world will collapse as it did for me. It has been a long journey and I still have to work on giving myself time particularly when things are hectic. Walking the dogs is my solace now and I leave my phone at home for 15 minutes. This is scary, as I hate knowing they cannot get hold of me, but I’ve built that up steadily over time. I now accept I am not invincible.
Please see our article on STEEL BONES in the Good To Know section of our website.