The Month That Changed My Life Forever
To even begin to put the last month in writing is a task, because in reality, the last month is 13 years coming to a point at which I had to take a step; a leap of faith and hold on to the fact that whatever happened, I had the strength to face my destiny, whatever that might be. Written down like that, it looks very inspirational and soundtrack worthy, but the reality is, it was nothing like that.
Many of you who already follow me, are aware of my family’s connection with Huntington’s Disease. A condition my mother suffers from, and a hereditary disease known as the ‘Armaggedon’ amongst neurological conditions. The disease affects people in different ways, causing loss of physical ability, loss of the ability to speak, eat and eventually to even think rationally. It is the most horrific thing to witness and takes no prisoners. HD doesn’t care if you are a good person, or if all your brothers and sisters have it already, if it wants you, it will take you and there is no medical cure (I’ll delve into this a little later as I am not one to give into Science and I actually believe we do have some control over how this beast manifests). But, for now, I want to tell you a bit about my journey, in short.
At the age of 18, I was given the devastating news my Mum suffered from this illness (an illness I’d never heard of) and watched as my Mum wept with guilt worrying about nothing other than her girls and wishing us good health. From that day forward, I grew up. Something changed. Roles were reversed and your Mum is suddenly not just ‘Mum’ and you find yourself very aware of what you took for granted. I was lucky enough to be able to go to Uni and know Mum was only in the early stages and my parents have always done what they can to allow me to do what I want in life despite what this illness brings.
I went to University and pushed my test to the back of my mind. I was a happy go lucky girl and had the attitude that whatever happens, happens and I would take life as it came.
Fast forward 8 years and I was married, and beginning to think about children. Now I must make it crystal clear that I do not judge anyone who decides to live their life as though HD is not in the equation. Many families continue to have children as normal, and I genuinely get angry at people who thrust their viewpoint in the faces of those at risk when they feel it is an unethical act. Nobody has the right to tell another how to live their life, or what is best. Some people live their lives trusting in the hands of God, and that is their prerogative, and you know what, there is nothing to prove that they are wrong to do that. Spiritually, life is meant to be mapped out the moment we are born, so in that sense, it’s no more dangerous than anyone else putting their child at risk of every single other way to die that there is.
That said, being at risk of HD throws up a whole host of questions for an individual. I am a believer in embracing life as it comes. I’m the spiritual one who says bring it on and takes ownership for the highs and the lows. But, witnessing HD in all it’s glory on a daily basis will test even the free’est of spirits.
My Mum’s brother tested negative meaning my cousins were no longer at risk, and my sister tested negative too. In my eyes, I had it. There was no way we all got away with it. I had spent 6 months counselling for the test which is the requirement to take such a big test and just as I had got into the testing appointment, I freaked out and pushed the needle away declaring, ‘I just can’t, I’m not ready’.
Deflated and disappointed I went home and contemplated never having children. Being the last in the chain as it were, left me feeling a huge responsibility. If I didn’t have children, the family wouldn’t suffer anymore. I discussed genetic testing at depth saying I sometimes wished life was like it was for Mum and Dad when you simply couldn’t find out, because then I’d have no choice. But I always knew deep down this was totally fueled by fear.
Again, fast forward 3 years, and I was back at the clinic. Divorced, living at home and convinced now was the time to know. I went with my best friend and told the genetic counsellor I was now ready. I told her, ‘I feel strong and independent, and figure I don’t want to enter a new relationship with this burden’. I had talked to someone that month who told me a story of a man in his 50’s who never tested, and when he did at 50 he found out he didn’t have it. He called it the ‘parrot on his shoulder’ and expressed a deep regret for how much of his life HD had stolen when it had never been there. This was the driving force for me to know now. Another lengthy 6 month process in which time I met Kevin, and told myself I could do it. He knew from day one what my situation was and stuck by me, so now was the time. I’d been having sessions with my spiritual healer Sue by this point, and she had also said she believed testing would give me some control back. I’d organised a danceathon and raised £4000 for Huntington’s and felt totally in control. I had my support network in place. I was ready.
Within a few months, I hit a huge wall. My business suffered it’s greatest financial strain and I was days from closing down. My support network suffered their own individual challenges consumed by illness, divorce, break ups and pretty much anything else you could throw in. I wasn’t naive and knew I needed people to support me and right now, they needed me, and I wanted to be there for them wholeheartedly. So once again, I decided to call off the test. This was perhaps the one time I couldn’t come to terms with backing out. I felt my fear was the real reason and I’d used external circumstances as a get out and criticised myself each day for being such a coward.
Kev and I discussed it in depth and said we would see how I felt in 6 months time and revisit. We wanted children but as we were in a fairly new relationship we weren’t in a great hurry. 6 months flew by and each day I tried to rationalise in my head why it was the right thing to do. I would tell myself that when I got the bad news (because I never thought I wouldn’t) I would become an ambassador for HD and be an inspirational fundraiser who didn’t let it beat me. I read up on epigenetics and how there is now growing evidence that suggests we determine how our genes manifest. Read here. I watched the inspirational Dr Wahl in her Ted Talk about how she reversed the symptoms of her MS. See here
Every positive action I could take I did. I even learned meditation in a bid to calm my mind and find myself…. And find myself I did. So much so, that I became in tune with where I really was, causing a complete meltdown out of nowhere one evening to Kev. I cried like I had never cried before I told him, ‘I just can’t do it Kev. I can do anything, I really can, but I just can’t do this’. Kev is a typical bloke and a massive pain in my arse most the time, but I really can not fault him when it comes to my situation with HD. He was awesome. He scooped me up and gave me a massive cuddle. He said ‘It’s cool. Then you don’t test, and I still love you, and that’s what we’ll do’. I felt an instant relief in letting down my guard and my decision was made. Never in my life had I been so sure. I didn’t want to know. We would look into PGD (Pre Implantation Genetic Diagnosis) and look to have children that way.
Another year whizzed by and my life went from strength to strength. Kev and I were happier than ever, my business rebuilt and I began developing LYL, following my meditation and new found appreciation for everything other than what I looked like. The paperwork for PGD was in place and we had decided that would be what we did. Life was good.
One random day driving home from work, I was listening to some tunes and choreographing my many routines in my head, when I suddenly had the thought….’I want to know’. Shit. Not again. But you know what, this time it was different. I didn’t want to know so I could have kids, I didn’t want to know so a man would know my future and I didn’t want to know because I thought I should. I just wanted to know and I was ready.
Yet another trip to the genetic counsellor (who I was actually bantering with by this point over my indecisive nature) and the wheels were in motion. ‘Me again!’ I said. She beamed at me and said she was thrilled to see me so positive and happy but that she would prefer me to wait 6 months and check that every single day I woke up with the same viewpoint because as I’ve been reminded a thousand times, you can not take that information back once you know. So I agreed (begrudgingly) and went back to daily life.
Even writing all that down makes me think WTF! All that in amongst life itself.
Wind the movie forward again to November 16th this year. I was sat on the living room floor, packaging journals. I’d been feeling rough all week but with so many orders flooding in there was no time to waste. My back was in agony and I felt knackered and I swear my boobs were bursting out my bra. I just didn’t feel right. ‘Surely you’re not pregnant’ I thought. I’d had my period just 2 weeks prior but I once got pregnant at the age of just 23 when on the pill, so I decided it would be a good idea to just check again. I was on the pill now and to be honest with so many late nights packaging journals it would be a bloody miracle if I was pregnant anyway! (Poor Kev) haha
A trip to Asda, a pint of water and pee later, there I was gasping at 2 lines on a stick thinking ‘SHIT THE BED!’ I instantly Facetime Sue my healer, who nodded with the biggest cheesiest grin and rosy cheeks before I could even show her the stick. ‘Congratulations darling’ she said. Not really Sue, what if I have HD? She smiled and told me it would be ok and we said goodbye. I called my best friend arguing it was a faint line so probably wrong. She’s got 2 under 2 and told me, ‘Kelly, there is no such thing as a false positive mate, you are well and truly up the duff’.
I sat there in silence for a good hour, thinking about what this could mean. The Mum inside of me who’d been bursting to come to life for 5 years wanted to gallop around the house in excitement, but I knew all too well that would not be the right thing to do given the choices I now faced. Kev came home from work and I just decided to tell him instantly; like ripping a plaster off. His face was almost like mine. ‘How? We barely even…..’ and that was the start of an absolute whirlwind few weeks.
I had to test. This was a sign whatever it meant, and somehow doing it for someone else gave me a strength I hadn’t experienced before. There was no way I was terminating a pregnancy of a potentially healthy baby so I could be spared the news of my own destiny. We decided to keep it between us and few close friends and I called the clinic the next day. I told her I needed the test asap. They don’t test before Christmas for obvious reasons. ‘Jo, I’m pregnant…..so I need this test…now’. I could feel her hands cover her eyes through the phone, and just reassured her, it’s for the best and I’ll be ok, I promise. She was ace, and called me back the same day with an appointment for the following day. ‘FUCK……..tomorrow?’ It was my birthday that day, but there was no way I was turning it down. I decided to not say it was my birthday and replied ‘I’ll see you at 3’.
The next day was strange. Kev and I got up, I opened my presents but didn’t really have much interest. I occupied myself wrapping journals before we left in between reading texts from friends wishing me a wonderful birthday. And at 2pm we left for the hospital. All the way there I didn’t talk. I just thought about that bad result over and over again. Just before arriving Kev took a wrong turn, and as we turned around, a cement truck drove past in front of us with the word HOPE across the back. Hope for Huntington’s is a well known charity and that year I had created a dance for HD called ‘Dance of Hope’. The hairs stood up on my arms, but I quickly dismissed it and got back in the zone. On arriving I marched into the room like a woman possessed. The doctor was ready with all his notes, and it was a fairly simple procedure of signing forms to say I wanted my DNA investigated. I shoved my arm towards him and asked him to just get it done. Kev sat quietly, inside I could see he was in turmoil but he kept it to himself. The counsellor asked how he was feeling and he replied ‘I don’t see we have much choice, I just want Kelly to be ok’. He hadn’t even allowed himself to accept I was pregnant at this stage, wholeheartedly focussed on me and making sure I was ok. I was pretty smug following that moment after my test and felt like an absolute boss for seeing it through. Kev asked what I wanted to do for my birthday evening and I said I just wanted to go home and watch Dumb and Dumber. I just wanted to laugh. His cousin bought us pizza and we just vegged out for the night.
The two weeks leading up to my results was an experience I will never ever forget. I am not exaggerating when I say that the words ‘It’s bad news’ did not leave my mind for one moment. I physically felt like my brain was going to implode. I decided to ride it out. I meditated. I worked. I practiced gratitude. I spent so much time reminding myself of all the good things to come out of this bad result and how lucky I was that my life wasn’t worse. The thought of terminating the pregnancy filled me with more fear than a bad result for me, and if I’m honest, all I really wanted was for everyone else to be OK. I didn’t care what happened to me. I could take it.
By Day 10, I said to Kev, I can’t do it. I’d been for a dating scan, and seen the baby on a screen. I’d continued to look after Mum as best I could, and I’d put on a show with my dance school all without people knowing. My work team were incredible and the few I told went above and beyond to relieve the pressure at dance for me.
After what felt like a year, results day was here.
Kev was great. He came into his own that day. We took each hour step by step. A cup of tea. Getting dressed. Leaving the house. Having some lunch. Driving to the hospital car park. Walking to the front door. It was all baby steps and helped me to break down the day into manageable steps. I was drowning in the word ‘Hope’, something I’d seen everywhere since the day I tested. I saw a vase in a shop I never go in, was followed by an inspiring blogger with the name ‘Hope’ in her name and wearing a bracelet and necklace with the words on too. I clutched onto my amethyst bracelet from Sue, which she had given me the previous day in a chakra healing session to prepare me for my results. Deep breaths and that bracelet were all I had to clutch to. That, and my faith that I could deal with anything eventually.
I kept it together right up until we saw the door to the clinic. My breath was literally pulled from my chest and I slumped against the wall and broke down, shaking and panting for breath. I was so scared. This was it, 13 years of waiting and wondering and now I was about to get the answer. That bad news was about to be confirmed. I always knew it was bad, I had been temperamental for months. I was so clumsy and had even scraped my car a few weeks prior. It had already started and this was just the day I found out how aggressive it was.
Kev suggested we take a wander round the hospital as we were 15 minutes early and I knew I didn’t have a 15 minute wait in me to sit in a waiting room. As he scooped me off the wall and started to walk me down the corridor I felt myself begin to hyperventilate and said that if I walked away now wouldn’t go back. I’d done it too many times. He span me round and said ‘Lets do it, I’ve got you, come on’. The second we pressed the buzzer and Jo came to the door I was uncontrollably crying. I have no idea why when I already knew what they were going to say. I guess ‘Hope’ is the one thing you can cling to when you don’t know. We sat down in the waiting room and my sweaty palms clutched Sue’s bracelet for dear life, as my leg bounced up and down and I hunched into the tightest ball I could get. I caught a glimpse of Kev who’s bottom lip was going. He was using all he had not to lose it in front of me. Within seconds we were ushered into the room where the doctor held that all important piece of paper. My cheeks were hot but my neck was cold. I felt like I was in a parallel universe. We took a seat, my eyes still glued to the floor clutching my bracelet and sobbing, and within seconds I heard the words ‘Good news. Your repeats were normal’.
Before I could even finish Kev had grabbed my head and was uncontrollably sobbing with relief for me. I sat in complete and utter shock, shaking from head to toe. The bright lights of the hospital room made it feel like I was dreaming, and I found myself touching Kev’s face to check I was awake. Jo handed me a piece of paper, and told me she was giving me this so that I would be able to look at it the next morning. I was speechless. All I could say was ‘Thank you’. We were going to have a baby too! We left the room that day a completely different couple. We were absolutely unbreakable The build up to that day had tested us over the years like nothing else with me lashing out, pushing him away, self destructing in a bid to ensure I fucked everything up for myself. In that moment just after we left that room, it felt like we had taken on the world together and seen it through. We hugged and kissed each other covered in snot and tears and went home to tell our loved ones. I was free of HD….. and we were going to be parents to a new baby. How did this happen?
The weeks that followed were an absolute rollercoaster. You would think finding out news like this would be the best news ever, and in no way do I want to suggest it wasn’t. People kept saying ‘Is it like the best day of your life ever?’. My Mum was made up and slept until 10.30 the next morning which I am convinced was peace of mind. My Dad was made up and Kev’s parents sobbed and my favourite reaction, a high five from my sister who even in that moment I didn’t hug. My dance girls screamed so loud I thought the house was going to fall down and Kev still couldn’t stop saying how happy he was for me with the hairs standing up on his arms every time I told someone. I should have been ecstatic. Thing is, I was so sure I had the disease, I never really prepared for life without it. And it has taken, and is taking some coming to terms with.
I remember a few days after my test, when it began to sink in, sobbing uncontrollably on a dog walk for the people I know who still have the disease. One of my dearest friends didn’t get the same news as me and I’ve really struggled to accept it. My Mum too, who is genuinely the sweetest person I know is suffering right now. It’s not fair. It was triggered by seeing someone walk a loved one round the park who must have suffered a similar debilitating condition. I felt the most intense guilt for being free. I felt undeservingly privileged and my safety net of HD was no longer there. I used to feel as though I was ‘taking one for the team’, and somehow, in some messed up way, I think it helped me to accept that life sometimes brings unexpected hardship. Yet here I was, free as a bird, pregnant with my first baby, happy in my relationship and crying. I felt ashamed of myself for being so ungrateful.
Stronger – John Ross & Robert Shields
I had been listening to a song throughout the 2 week period I was waiting for my result. A song I heard on the telly the day after my test. Song lyrics do something to my ability to cope. I don’t know why but they always have and dancing to them always takes it to a new level. I reminded myself of the lyrics to this song and realised that everything we feel and experience is part of growing and evolving into a new version of who we are and the best thing we can do is embrace it and ride it out. So I did. I talked to Kev about how I was feeling and he listened. He told me he had worried that I hadn’t talked much since my test and that it was going to take time to allow my mind to let go of what I thought life was going to be. I am not there yet, but I feel so much stronger than I was. I want to focus my energy on continuing to campaign and fundraise for a cure and know that all those I know with HD will be part of my life forever.I have to be an active part of helping others. We belong to a very special family; a group of people who know how precious life is. I will never give up the fight for a cure until the day I die.
What this life changing experience has taught me, is that in the moment, filled with fear, self doubt and negative thoughts, my faith got me through. The faith that somewhere, deep down inside of me, there was something stronger than HD. And in that moment when I sat in front of that doctor, I did not know what my destiny was, but I owned it. I owned it wholeheartedly, with tears and full of fear, but it was mine and I by being there and looking it in the eye, I was winning no matter what that result was.
That is the most important thing I have learnt on my journey, and everything LYL is about. You will go up, and you will come crashing down, but you must own those moments, and hold on to them as part of you. Having faith in your ability to ‘ride the storm’ is where you will find the courage to see things through. Don’t always problem solve. Sometimes embracing and pushing right through the core of those feelings is what you need.
I will never forget the month that changed my life and this is the first chapter of a new story, never free of HD, but safe and more grateful that I could ever have imagined. Thank you to everyone who invested in my story from day one and helped me believe in myself when I needed it most. And thank you to Kev, who in spite of his own fears, never gave up on me. Here’s to Baby Murphy!