Ever since I was 16 I thought I would die at 40. That's when I would get sick with Huntingtons Disease and that's when my life would end. I pretty much had my life planned out for this. I would have my kids young so that I was around to parent them. I would get them to an age that they could be independent and not need me and then there was a very good chance (like a flip of a coin chance) that I would get sick and die. 40 was the end.
I knew I could get the test for HD when I turned 18, however I didn't want to do that. I was young and wanted to choose life. Testing felt like giving up hope, as I knew what the result would be. I wanted to have my kids and live my life to the fullest, knowing there was a very good chance it was going to be cut short.
There was a lot of judgement around this decision when I chose to have children. There are a lot of strong opinions and stigma surrounding passing on a destructive gene like HD. Historically they wanted to use eugenics to stop us from breeding. That was the answer to this illness. Stop families reproducing. Hence the ongoing shame so many families feel talking about this disease.
However I felt that if I could give my kids 40 years of life that was a gift. Right or wrong that's the logic I went with to allow me the freedom to have my kids and be a mum. I was 16 when I had my first baby (which wasn't so planned!) but at 21 I planned my next 3 kids and my family.
I saw a genetic counsellor when I fell pregnant with my second child at 20. The counsellor gave me the option to get tested for the HD gene and abort the baby if it had the gene. There was no way I was doing that at this stage of my life. I just wanted my family and my kids. I wanted to squeeze as much as I could into my short life. So I had 4 kids not knowing if I carried the gene, and not knowing if I may be passing it on. My husband and I bravely faced a future of not knowing whether I would be around or not.
Over the years though as my kids got older and they witnessed my mum getting very sick, they started asking a lot of questions. A little voice in me was really starting to worry. What if I had passed this onto them. How on earth would I cope with that guilt. How on earth would I cope with them watching me get sick. There was no way in hell they were ever looking after me like I looked after my mum.
Over the years my brothers decided they wanted to be tested. My eldest brother had his blood taken in his early 20s, but left his results in the counsellors office for 8 years. My next brother told me he was getting tested. I can remember thinking "why on earth would you all want to do this!" But for each of us it was very important at different stages of our lives to get those results. Living in the unknown can become torture. My youngest brother had his blood taken a few years later and got his results too. With each one of these testing processes it felt like a part of me was getting the test. I feel like I've been tested 4 times! With each one of their positive results I felt devastated and I lost hope in life. And then I would rise back up to keep going.
The night that I decided it was my time, my 5 year old son Lachlan asked "mum are you going to get Huntingtons?" I said "maybe honey, I was thinking I might find out. What do you think?" Thomas piped up "I think that would be great mum. That's really cool! You will know its coming so it wont be so scary like if you didn't know"
"Mum will you be like nanna and not talk good?" asked Lachlan
I told him that wouldn't happen for a very long time. Thomas must have read my mind "I wish I had a magic wand and no more Huntingtons for nanna or mum or anyone in the world!"
(Extract from an article I did for Marie Claire in 2008)
My kids deserved to know if I was going to get sick. And I wanted to prepare them for what was going to happen to me. I started the testing process in August 2007 .
I think one of the worst things about Huntingtons Disease is watching your future play out right in front of your eyes. Whilst we are doing the testing our parent, aunts and uncles are all getting very sick. So we can see exactly what is going to happen to us. I would wonder.. Are all people exposed to the way they are going to die every single day?
I was 28 at this time and needed to know if I only had 10 years or so left for my kids. We all deserved to know the finality of that.
So I started the testing process. The test is an emotionally hellish process. There were counselling sessions to find out if I was mentally stable enough to handle the news.. And then there's a blood test with a genetics crew. Then the very worst part is the 6 week wait for the results to come back. Those weeks are torture. I washed a lot of windows in those weeks.. As sitting still is an impossibility!
I got the phone call that my results were in and my husband and I drove to Newcastle to get them. I was an angry, cranky, emotional wreck during this time. Its just fucking messy really. 2 of my brothers already knew they had it. My mum was getting very sick in the nursing home. HD had taken the relationship I needed the most in my life and now I was going to find out if my kids and I will go through the same thing?
I just wanted it over. My kids were 5, 7, 9 and 14 at this time. I just wanted to know now so I could start taking vitamins and show them that I would do everything in the face of this illness to stay well for them. I was pretty certain I already had some early symptoms with a foggy head and clumsiness. So the result was just going to confirm what I already knew, so we would face that and l would live the best life I could.
As I sat in the genetic counsellors office I was so scared. My husband and I sat down and I waited for him to confirm what we knew. If I was gene positive the results would show two sets of numbers 17 and 40 plus. I stared at the paper. There was a 17 and 17. I did not have the HD gene.
My husband cried and cried with relief. He was so emotionally overwhelmed. I stared at the paper. I kept looking at it thinking maybe they had got it wrong. As I sat there and let the news wash over me I felt numb. How on earth could this be. I was certain I had symptoms, and certain I had it. My life was not what I thought it was. Which was terrific.. and confusing. I thought my whole life I had this and it wasn't true...
I was stunned. My gosh, my husband and I now had a future together with our kids, which had never before been. Our kids never had to worry about inheriting this disease, ever. There was so much involved in processing that. And I would now tell my family...who were not so lucky to get this news...
As we drove home and told everyone, I felt so quiet. I was so relieved for my kids, there are no words that will ever describe that feeling. Yet as much as I knew my brothers would be so happy for me, I just wished desperately that they could have had this result. How on earth could I ring my brothers and tell them I don't have it? How could I celebrate something other people in my family were not lucky enough to receive? But as I told each of them they cheered and cried with relief.
As everyone started to celebrate, feelings of silence encompassed me. I withdrew. It just felt conflicting. How could this disease pick and choose who it would take and who it would leave behind. What exactly are we celebrating? I could very clearly celebrate my kids lives, that was clear. But everything else didn't feel so straight forward.
I remember describing it to people like I felt like there had been a car crash and everyone in my family was hurt but I survived and we are celebrating?
Or our house just burnt down and everyone I love is stuck inside and I cant get them out. I'm screaming that I want them all to get out.. but they cant...I just have to watch...
I just couldn't celebrate any of that.
So I planned that when my brothers got sick and died, I would die too. I would not do this life or this illness another 3 times over.
But... 10 years on... that initial panic has settled and leaving my life is not an option.. my kids are now 14, 16, 17 and 22 and they often say how lucky they feel, but how bad it is for other people. We accept and talk about the conflicting nature of our fortune.
For the last 10 years I have battled the guilt, grief and powerlessness of life in the face of HD. My mum, aunt and uncle have all passed away, now exposing us as the next generation. I have fought with hellish demons of feeling overly responsible to fix something that can never be fixed. Eventually that has to stop - hence my recent survivors guilt blog - sometimes I just have to tell guilt to fuck off.
It is ok that I exist.
In 2 years time I will be 40. The age my mum was when she was diagnosed as being symptomatic. After my test it took me a long time to adjust to now having a life beyond 40. I can remember when I came home after getting those results and I dropped a can of beetroot on the floor. I just looked at it and thought.. wow.. everyone drops shit. I had never had the privilege of dropping something before and not assuming it was an early symptom of HD. My brothers still live with that mind torture, and they do it profoundly well.
Being a single mum I am so grateful my kids still have me around and I'm also glad I will be around to love my family. I have many close friends who are also gene positive with this disease, and I am so very privileged to witness their strength, courage and love, in the face of illness...every single day.
I have accepted that all I can do is love everyone. I really have no control over anything else. I cannot fix it or make it go away. But hopefully I can make life a little gentler by being here. And I can always tell stories.
Keeping myself mentally, physically and spiritually well feels critical ... illness or no illness... Finding love and beauty in every single day helps to keep my spirit alive ❤️
Go gently friends xox
PS I discovered this great word the other day...
Wabi-sabi (Japanese)
"A way of living that focuses on finding beauty within the imperfections of life and accepting peacefully the natural cycle of growth and decay"
So beautiful 💜
