I met Christy at my brother’s wedding in Cyprus. He was this great handsome, tall man with loads of character, and we were friends before we became a couple. Once we did get together, we moved things along quite fast and I moved to Dublin to be with him a year after we met.
A couple of years after that he started having terrible headaches, really debilitating, and then had pneumonia more than once. He also developed a tremor and was a bit unsteady on his feet. It didn’t occur to me that it was anything serious at the time, I always put it down to something else. The shakiness seemed to be when he was with my family for instance, and I put that down to a nervousness around them. I didn’t put the various pieces together and just didn’t realise there was a problem. We knew Huntington’s was in the family but had no idea this was the beginning of Christy’s Huntington’s journey.
Things started unfolding when he was 32 and ran into trouble at work. He worked in security, and was suspected by management as drinking on duty. He was devastated, he loved his job and although he liked a drink he would never have done that. He couldn’t really prove it though and he lost his job which was a huge blow to him. It really destroyed him. He went to the GP, in an attempt to find a physical reason why, and eventually of course we found our way to a diagnosis. I had not really understood what Hungington’s meant until this, I remember looking it up and being devastated by what I learned. Christy’s Mum sat me down before confirmation, saying she believed it would be a positive result. Christy’s Dad had Huntington’s, it had caused so many problems in their lives, so his Mum saw the signs and helped me understand what we were dealing with.
It was too late for him to get his job back. We went through the appeal process and worked really hard to try and sort things out, but it was just too late by the time we had the diagnosis, and even if it hadn’t been, he couldn’t have kept doing that public-facing role. That really broke him as he had loved it so much. In the end he did get the apology he so dearly wanted, and a small amount of compensation. He was happy with that and although I look back and think we should have fought for justice, you are in the eye of the storm and don’t always make the decisions you should. His Mum had made us understand the reality of Huntington’s and we took the choice together not to get a mortgage, and not to have children. Such big life decisions.
I kept my job, my boss was absolutely brilliant, but really my focus had to switch to being 100% on Christy. I had to care for him but also I had to fight so many battles, we really struggled with services, with getting what we needed, and eventually he couldn’t verbalise things so I had to do all of that. We were so lucky to have the brilliant support of Patricia, Liz and the HDAI.
It’s an incredible stress. I think other people around me probably thought that I was coping. In reality I put a mask on when he was first diagnosed and kept that mask on tight. I knew I had to stay strong.
Christy died in 2016 but he is still such a big part of my life and there is so much that I want people to know about him. He was such a big personality. He was so full of life and funny. He made a list of things that he wanted to do. He wanted a tattoo but because of his movements and being in a wheelchair, it was hard to find someone willing to do it. Eventually, we found an artist who agreed but needed a GP letter saying it was ok. Our GP knew Christy’s personality and wrote a note saying, ‘I can confirm that Christy is able to have a tattoo but no naked women Christy!’ which gave us a laugh! He also wanted to dye his hair and get his ear pierced! We had a lot of fun together.
I want people to know how devastating Huntington’s is, but I also don’t want people to be scared if they are facing a diagnosis. Admittedly I always think of Christy as very brave, but I am sure other people may feel the same as me, that because the disease is so slow, he was more in control than he might have thought. When he lost his speech, he was prepared and ready, the same with the feeding tube. I actually think he had control right to the end of his life.
In some ways it may be harder for the person left behind. I lost the love of my life, and also my focus and sense of self. I lost all motivation and job satisfaction in my role in Accounts so I completely changed career and have found my way to what I love doing, a career path in advocacy, which is wonderful. I struggle now to socialise, I can’t build emotional connections because I don’t really know who I am any more. I hope any other partners and spouses reading this might learn from me and try and maintain friendships, take time for themselves outside the home environment, although I know of course that is easier said than done.
I do want people to know that although we went through so much pain and heartache, I wouldn’t change a thing. My brother has said to me a few times, ‘if you’d not met at our wedding you’d have had a different life’, but I believe it was fate, I wouldn’t change a single thing. I would do it all again, in a heartbeat. He gave me so much, and I learned so much about love and the value of life. Every time I think about him I smile which says it all. I feel blessed and honoured to have spent my life with him.
I’m so pleased to be taking part in this project. It’s so important that people get to know not just what Huntington’s is, but who it affects, and to get to know the people behind the name. Sharing his story means his life continues to have purpose, which is only right considering the man he was.
Anne O’Shea Clarke, Dublin.