The Story Behind It All
Summer 2004, aged 18, enjoying the summer holidays, university weeks away and not a worry in the world.
Dad calls my sister and I downstairs, and we grumble our way out of our rooms, pretty annoyed at the parental interruption to our teenage VERY important business of MSN Messenger, listening to The Kooks on repeat and planning the perfect ‘first day at uni’ outfit that would give a message of, ‘I’m cool hang out with me’ whilst also saying ‘Whatevs, I’m so chill, here if you fancy a chat’.
Ushered into the kitchen by a nervous looking Dad, we were invited to sit at the little round table in our kitchen, where we found Mum, head down, a serious lump in her throat clear to see.
‘They’re getting a divorce’ was my first thought. They’d been fighting recently, Mum had seemed to be angry, a trait she never had being a gentle natured, period drama loving, caring, quiet bookworm.
I sat down ready to take the news and watched as Dad looked at Mum before taking a deep breath.
(Heart stops, throat closes, shoulders tighten)
‘Mum’s going to get more poorly, but we don’t want you to worry, we are going to take care of things’
(Heart plummets into stomach)
Dad went on to explain that Mum had a condition called Huntington’s Disease. He explained that they had known for several years but didn’t want to tell us until it started to take control. It was important to them that this didn’t affect our childhood.
Huntington’s Disease is a genetic neurological condition that attacks the brain, affecting a person’s control over everything; rationale, eating, walking, talking, empathising. It causes a person to choke, slur speech until speech is no longer possible, consumes their body with involuntary jerky movements, affects their ability to think rationally bringing depression, mood swings and aggressive behaviour in some cases and in a shitty nutshell, takes everything from them but doesn’t kill them but rather weakens them until something else takes their life. It’s known as the Armageddon of diseases, likened to Motor Neurone, Parkinson’s and Alzheimer’s put together. Symptoms begin from any age between 30-50 and life expectancy is between 5-20 years.
Mum had started to scrape the car, bump into us when walking and we had noticed her foot would move up and down when sat cross legged. She had also begun to move her fingers whilst sat with her hands in her lap. Both my sister and I had noticed these things but not enough to talk to each other about.
Dad took a moment to pause before telling us both that this disease was hereditary and that there was a 50% chance we carried the same gene. At this point, Mum completely broke down, sobbing with her hands in her lap and her head bowed down visibly consumed with guilt, fear and pain. She sobbed the words ‘All I care about is that you two don’t have this. I’m so sorry’. It was like 7 years of waiting to say those words to us poured out of her in one crumbling sob. It broke my heart.
To be honest, the experience is quite a blur to me, but I remember one thing crystal clear. My sister sobbed for my mum. She was so over protective of her and gave her a cuddle. Dads’ eyes filled with water and he shook it off to be strong for us all and I sat there completely still, bolt upright and silent. I remember telling Mum not to worry, and that it was cool. The conversation was left in a nonchalant manner as my sister and I wandered back to our teenage business to try and digest the information whilst going about our mindless tasks; Mum and Dad suddenly on new territory, wondering what to do next. Do we let them have a moment? Do we make them talk? I can’t imagine what they went through mentally following that conversation.
That was it. We didn’t really talk about it again for a while. Mum just started to get more poorly, and we just took each day as it came. After all, who could be prepared for such a thing as Huntington’s Disease?
Just as a side note, back when Mum and Dad had us, there was no genetic test for HD. People didn’t know much about it, and so families had children much like families with a history of cancer. You just focused on the positive and believed that any illnesses would be cured by the time your kids grew up. In 1997 a test became available to determine if someone carried the gene and would develop the disease, and as Mum and Dad were planning a third, they decided that for them, it was something they needed to know before making a decision. They never tried for a third child. For each family, the decision is tough and different for all. I respect every individual’s decision and know from experience non of them are the easy way out.
So that was it. A new world to navigate, new thoughts to digest and suddenly a mum who might not be around when I grow up with potentially my fate in life diagnosed at 18. There’s a 50% chance I am going to become disabled, unable to talk and eat and probably die young. That’s a challenge for an 18 year old let me tell you.
My parents gave us everything we ever needed growing up, and continued to make my life as normal as possible as Mum’s disease progressed. Mum is now 14 years into the condition, and although my mum in every way, it’s been a really long time since I was able to say ‘Mum, what do you think? What shall I do’. That’s been especially difficult since becoming a mum myself 11 months ago. I’ve missed her in those helpless moments when you feel like the only one in the world who has ever left your baby crying in the cot just to take a breath and refocus. You’re kind of grieving without being able to truly grieve. I guess that’s where Instagram has been an incredible community for me. You’ve all held my hand through many a wobble.
I can tell you that I tested negative for the condition. After 13 years of fearing it, I was given the result that I needn’t worry anymore. The only way I can describe the 13 year built up to that moment would be to say it’s like having a gun pressed against your forehead every minute of everyday, not knowing if it’s loaded and if it is, when it’s going to go off. It’s the most intense weight I’ve ever known and around that, you have a mirror image happening live to the person you love most in the whole world; Mum.
There is a story to my Huntington’s Disease test, and that is in my blog post ‘The month that changed my life forever’ but my negative test result for the condition is not what gave me hope. It would be wrong to call that result the catalyst for positivity. It was a flip of a coin, and the coin fell the way I would have hoped and that is where I leave it. People don’t know what to say when you test for a condition like this, but a few comments that I struggled to digest in the weeks following the news was ‘I always knew you didn’t have it’ and ‘It’s good karma. This is because you’re a good person’. People mean so well, but comments like that would destroy me. Nobody deserves Huntington’s Disease, neither do they earn their freedom from it. On top of that, you can not have a ‘feeling’ someone doesn’t have this condition. Until the age of 46 my mum was just like everyone else, fully able and sound in mind. It was a gene defect. You can’t see it.
So where did I find hope? How can there possibly be something wonderful in such a tragic circumstance?
The positive outlook came well before my test result. Amongst that struggle, and in the thick of that minefield came the gift of perspective. One of the most useful tools I’ve ever owned, and one that has served me well in some crappy situations since, including divorce, losing my home, almost losing my business and indeed, testing for this condition.
I don’t know when it was born within me, but what I do know is that it has matured more and more as each day goes by and I learnt quite quickly that this trait was infectious to those I had around me. Having the ability to reset pretty sharpish, as well as finding a way to stay calm amongst a whole host of serious situations has now become my calling in life. I’ve gone from a frantic, running out of foundation is the end of the world, my fucking hair got wet in the rain I’m fuming type of girl to a ‘Kelly, remember you here and you are alive?’ kind of woman. I mean, it’s definitely got more depth than that, but that thought goes through my head a lot when I feel myself surging into a frenzy.
I don’t want you to think I have this dialogue with others. I couldn’t possibly. Every experience is valid no matter what it involves. This event in my life actually gave me huge compassion towards others and their struggles. I’ve not got a bitter vein in my body for my situation and I’ve learned to understand that my life experience is not another’s, and therefore everyone’s mental band width is directly proportionate to what they’ve experienced. I appreciate their worry and understand it’s within the limits of their knowledge and personal ride. It’s not my place to pass judgement, neither their job to understand life from my perspective.
However, this mindset has equipped me personally to be able to deal with situations much more logically, and in turn gave me a toolkit to help others to refocus, find something positive and to stay cool when things get too much. I’ve become the calm in the chaos and that is truly a lesson learnt. Just like a diamond is a piece of coal that did well under pressure, this skill I’ve developed is a ruby that was discovered amongst the depths of my rubble.
I don’t want to sit here preaching about how much perspective I have on life, like I waltz through my days on a pedestal of positive outlook without a worry in the world. That would be a lie and I’m an honest story teller.
I still have my (regular enough) moments. Life is still ever evolving. Things are always new. Motherhood. Relationships. Business. The world as we know it. They are always changing and inter changing. New rubble could be just around the corner. I still cry when I feel like my to do list is going to make my head implode. Or scream at Kevin my fiance when I feel like he doesn’t understand the new pulls of motherhood. It’s normal for me to rush my way through a few weeks before I take time to stop and reset or to catch myself moaning about the washing basket and how it’s slowly taking over the bathroom. But what’s changed is that every night (and I mean every single night), I lay down on my pillow and say thank you. I think of all the things I am lucky to have, and I close my eyes peacefully with no anger, negativity or worry.
I am ok.
In that precise moment I have all that I need to be safe, warm and at peace. This repetitive outlook has shaped the way I cope with tragedy. I feel empowered by the experience that was thrust upon me at 18 and that turned my world upside down. My ruby in the rubble was the person I became through the struggles I faced and I am a kinder, stronger more genuine person for it.
I now fundraise directly for the project that is constantly discovering new treatments and potential cures for Huntington’s Disease as well as chatting about HD over on Instagram to try and raise awareness. On July 18th this year I am one of the candidates being used for a study of the brain at UCL. By doing this, I feel like I am contributing to a better future for those who didn’t get the result I did and it helps me to accept my result knowing I am dedicating a chunk of my life towards that research.
There are always things that have a negative impact on us and I could choose to focus on the negative way this all affected me. But I choose to hone in on the positive; the things it has taught me and the hope for a cure.