Carrie-Jade Williams--The Men I Met Along The Way

It began with the eyes. Like so many love stories. Romeo on his balcony hoping for a glimpse of Juliet�s, Tristan and Isolde, Lancelot and Guinevere. The list could go on but this isn�t about all the great loves throughout history. Spoiler alert, this isn�t even about me meeting �the one�. But this is still a love story or a testament of sorts, to all the men I met along the way. The ones I loved, the ones I didn�t and the ones who had no idea I even existed.

Now stop right there, that makes me sound very free with my morals as Granny would say. I�m not. If feminism had won there�d be a few more women in this story but there aren�t, as you�ll see.

This is my story, the men I met, questioned, harassed, entertained, and on and on.

And it did start with my eyes. Only not in a gooey, hand holding, expensive lingerie kind of way. If my love story was on Netflix it would be in the horror section, or gritty section, not with the romantics. So, imagine a love story, minus the Romeo�s, Tristan�s and Lancelot�s.

I think we�ll just get started on this journey. So back to how it began, my eyes, and a �30 eye test.

Don�t blink. I commanded myself. What was that book that said you could command things into reality just by thinking them? The one Michelle was convinced she�d conceived her third child purely because they built the extension and made room for her? The Secret, that was it. Send out positive non-blinking energy as this was getting embarrassing�. DON�T BLINK.

I rested my face against the bar and for some unknown reason held my breath. Come on, it might help. The picture, a multicoloured hot air balloon covered my field of vision as the contraption came closer to my face.

�Good Job Cameron, nearly done, keep still,� the optician, or whatever you�re supposed to call an optician�s helper said. This woman had the patience of an absolute Saint.

My eyelid closed just as the puff of air hit. Our fifth attempt. Another failure.

�Not to worry. Some people have issues with this. I�ll let the optician know and honestly, don�t be worrying,� she said, holding the door back to the waiting area.

I took my seat, pulling my cardigan over my hands so as not to touch anything. Eventually my name was called by a young-ish Optician who I followed into her tiny little room. Breathe, they aren�t going to stab you in the eye. They are experienced.

�Yes. I know, for some odd reason my parents opted for a male name for their new-born daughter. I usually go by Carrie but the lady at reception needed my full name, she said to apply the tax rebate,� I said. Nerves making me babble. Even though it wasn�t exactly, this was medical enough for me to be anxious.

She smiled. Pulled a piece of apparatus in front of me. Turned the lights low and sat on a stool in front of me.

�Now just relax, I�m only going to have a look.� She was nice, blonde hair curled. Far more fashionable than my messy bun I�d thrown into place on the bus ride here.

She shone a light into my eye, moving it away, peering through a lens. She repeated it.

�Keep looking straight forward,� she commanded on her second attempt. �I know it�s tough. I�m nearly done.�

�Now then,� she said, turning on the lights and handing me a tissue. �Sorry about that. I know it�s uncomfortable.�

�Ok, I don�t want you to panic, but I�m going to be calling an ambulance to take you to hospital. You�re left eye isn�t responding to light and I just want you to get it checked over. Is that OK?�

Now, she didn�t take me hostage but she was very determined that I needed to get it checked. Apparently an eye, or more accurately a pupil not responding to light is a bad thing.

I don�t remember what else she said. I remember being distracted, texting to cancel my lunch meeting, hoping I had my VHI information saved on my phone and that I wouldn�t be stuck waiting in A and E for hours. If I�d known at that point the implication of that simple eye examination, I�d have paid more attention, absorbed the colours, the sounds. For some reason, the fact I can�t even remember the texture of the carpet or the smell of that room bothers me, because after all that�s where it began.

Recall all the moments in your life you�ve been confused. Do I turn left at the lights or right? How do I pronounce that bookcase name in Ikea? Is that Trumps real hair? Now times that moment by 1000 and you�ll be somewhere near the moment I was in.

I�ll freely admit it I�d always thought of myself as fairly intelligent. Not Elon Musk level intelligent, but above average. And not arrogant. I knew I�d never design a space shift. I was more a proud geek.

Dr, sorry Mr Fitzgerald squashed that. The pen he�d been holding the entire time I�d been in his office rhythmically flicked backwards and forwards. Even as he moved in his chair, the pen kept moving. Even as he was talking, the pen kept moving.

�Cameron, this must be a lot to absorb. I�m sorry it isn�t better news.�

�As I explained there are no treatment options. Huntington�s is rare. I suggest you take this literature and book with my secretary to come back in three months.�

�For what purpose? If there�s no treatment? I�m sorry I feel like I�m being really stupid.� He was having to use clich�s to explain my extinction.

Then it hit me. The way he�d pushed the box of tissues to my side of the desk. All the leaflets about will�s and hospices. I was dying from a disease I�d never even heard of.

No I didn�t start wailing in the Doctors Office. The tears would come later. In private. I processed what I could. A disease I�d never heard of was ravishing my brain. Rare. Untreatable. Terminal. No Happily Ever After, even though my story had started Once Upon a Time. At the end of the meeting Mr Fitzgerald (the Doctor who used Mr) handed me a piece of paper and a pencil, clearly a positive result to a genetic disease correlates with pencils and wax crayons, like a child at a restaurant being handed a colouring page to keep them quiet while the adults enjoyed themselves. No more fountain pens for the dying girl.

�Make a list. A bucket list,� he�d said. Smiling. Hoping I�d smile back.

I did. Even in death social etiquette reigning king. I needed to kick this co-dependency brainwashing.

�All the things you want to achieve.� Then he held the door open and showed me to a waiting area. Full of people. Another box of tissues waited patiently on the table. I wondered if he�d bought shares in them, the amount he must go through handing out so much bad news. I imagined the top tissue boasting to the others. �I�ve got her, she�s mine.� Well not so fast Missy. I can do lists. My entire life up until this point has been lists.

The chair was scratchy. See I could still hold two thoughts simultaneously. Number one, I�m dying. Number two, this chair sucks. Turning 30 had been bad enough. A world recession in my 20�s meant buying a house was out of the question. University. Graduation. First Job.

DNA is supposed to tell me who I am, but I�ve run out of time to know where I fit in this world. Fantastic, the girl who loved Jurassic Park died before the final Star Wars Movie was released.

God Google detailed the options, Holy Land, Jesus� Tomb, more bible-y places. No walking on water demo�s though. Even the sight of the alleged burning bush isn�t still burning.

The tremor in my hand flicked upwards in the tell-tale Huntington�s way I�d ignored.

Where do rebels go? Salem. And the witches. Disney World. Every feminists nightmare. All those princesses waiting around to be rescued rather then getting off their own butts. No wonder Hillary lost, all those girls too busy waiting for their knight on a horse to tell them how to vote. At least Trumps entertaining.

Maybe visit my mother, the one who�d built me a castle, fought off dragons to protect me from the world, and I was certain had left me enough breadcrumbs to find my way home. How could I tell her the news?

Everest. I�d seen the movie. Check. It would make beautiful photographs. Check.

Cold and hiking? I�d just paid a senior Neurologist to tell me that I�d never drive, or rock climb, or row, or, or, or. Summitting Everest, not an option. Wait, they don�t let non-professionals do that, they let us go to some sort of camp wearing cute snow boots, this could be a possibility. I don�t think Greta Thornburg- whatsher name would approve. I�m dying before turning 35, my carbon footprint is going to be far smaller than I imagined, so maybe.

A quick scroll down. Wait. �10,000 for a 5-day tour of Everest! Not a chance. No Air BnB on Everest so it�s reflected in the price.

�How are you doing?� an old man says. I look at him part way through realising I never have to set foot inside a Gym again. Unless I want to. Unless during this transformation from healthy to deceased, I find a sudden passion for athleticism.

�All this waiting around. I hope the receptionist will stamp my car parking ticket.�

I nod as his name is called over the speaker. I watch him. Getting old, another thing I no longer need to worry about. Not that I ever did. But aren�t we all supposed to be living this mindfulness- in-the-moment-best-life-insta-ready version of ourselves?

I could break into Sea World and free the Whales. To where? No idea. Maybe just a charitable donation to people who knew about those kind of things. A Netflix documentary does not an expert make.

Bali. All hip people go to Bali. I googled where exactly Bali was. Followed by a quick top 10 weirdest places on Earth to visit. I wasn�t quite ready to type the before I die part. A life size model of the Arc, as in Noah, in Kentucky. A pencil museum in the Lake District. An amusement park dedicated to Ginger in Australia. You know when you�re a kid and some adult asks you what do you want to do when you grow up? I wonder what they say to the kid that says, open a Ginger amusement Park.

At least I can eat cake now. Sugar in my coffee. No more knickers nearly cutting off my circulation simply to look half decent in a dress. Comfy undies, belly out. Hair finally the way I want it. Maybe even a tattoo.

I�m dying. The words shouted in my brain, so loudly I was surprised I didn�t cause an evacuation. But no-one knew yet.

My feet carried me out of the hospital. I headed into the city away from the Hospital and all it�s bad news. The irony. Hospitals are only useful for those needing healing, where did people go when the scientists hadn�t invented the healer yet? Church? Hospices? H and M, the sign caught my eye. I needed to pick up thick tights for tonight.

I�d splash out on the fancy ones. Was I seriously fretting about tights. Consumerism to the Grave, but I suppose the show must go on. And I do love H and M. They�re sizes always have a little extra wiggle room.

I wandered through the shop, not able to focus on anything. I grabbed the tights and headed to pay.

A que, as usual. Imagine if I just announced to the people ahead of me. Hello everyone, just found out I�m dying, there�s no treatment, any chance I could go ahead of you? I didn�t. I couldn�t. I paid, took the bag and walked outside.

Ten minutes of sobs, snot and squawks she�d booked a flight. Sometimes we need love to just drop everything, throw some clothes in a suitcase and board a flight. Love sometimes needs to travel, when we can�t.

That�s what would have happened if I had told her. She�d have flown immediately. But I didn�t tell her. I wasn�t ready to admit defeat. I wasn�t ready to admit, full stop.

Did you know you can buy a coffin made of willow, handcrafted by a man in West Cork? You can. I visited his workshop. Not to buy a coffin, we aren�t at that stage yet, but to attend a hand weaving basket workshop. It sounds more lame then it was. For some reason, finding out death was following me around made me even more determined to try my hand at all the things I hadn�t even realised I�d wanted to. Like Basket Weaving.

All the things I�d been putting off for some future unknow date. Things I�d unknowingly classified as �TO DO LATER� not realising that there would be no later. Isn�t it really mass insanity to live always thinking about later. What will I do after College? After Work? After the Summer? Next Year? When I retire?

All those books I�d always intended to read. Too much time wasted listening to Joe Rogan.I still have some time to finish those Hemingway�s I�d always put off.

Living waiting for our time bank to be in credit is insane, or at least I decided it was, so after a quick google search (Google really had become my new best friend) I hopped on a bus to the West of Cork.

I was useless. I had no coordination and not because of the Huntington�s, just from my lack of ever doing anything artsy. I left after that weekend with memories though.

As soon as I got back to Dublin I knew the tonic I needed. A quick trip to Ikea to look at all the affordable trash my generation were supposed to boycott at the say so of Eco- Warriors, but secretly loved as we couldn�t afford anything else.

�Anyone sitting here?� tall man bun asked, hinting at he empty chair opposite me.

�No, you�re welcome to it.� Total transparency here; I�d resumed he was going to take it away, not sit down. So when he put his bag on the chair and went to collect his food from the cafeteria style, help yourself, low cost way area that I think makes Ikea awesome, I was surprised.

He told me about his work. An Architect. His favourite places to eat in the city.

But when he asked me out I had to tell him. There was no future here. I had no future.

�You seem really great, and in another universe I hope there�s a me saying yes. But I�m ill, so in this Universe you�ll have to go find some other girl.�

It wasn�t all bad. He left me the book, so I saved �15.99. As I didn�t have the time to wait for books to turn up in Charity shops my book reading habit had got expensive so �15.99 was a major bonus. And I was grateful. For an hour, in Ikea, I remembered what it was like to be a girl, wearing lip gloss, who had the possibility of falling in love. Even if he did have a man bun.

�Can I ask you a few questions before I cancel your membership?� the man behind the counter asked. The one I had happily marched up to and with a sense of glee informed I was cancelling my membership.

�Not really. I paid for two year and only came here to use the jacuzzi and sit and watch men work out.�

�If they were looking for an overpriced gym membership to delude themselves into thinking they�d lose that stone of weight they couldn�t shift at slimming world, possibly, yes.�

He smiled, caught himself and then attempted to stop by clamping his mouth shut.

I walked over to the coffee shop area, all bright colours and high stools. Individual electric sockets ready for a laptop or devise to be charged. When had life shrunk? Work, gym, work, sleep. Intermittent fasting. Vegan diets.

�There�s no charge for this,� the girl behind the till said, as I fumbled with my purse.

�Ben, at reception. He�s sorry. He didn�t read your medical before he. . .�

�Interrogated me?� I laughed. That cake really was worth paying �50 for 12 months for. They just needed to add ice cream and it would have been perfect. So technically it wasn�t a freebie but the thought was nice.

�I was going to say pretty. Not young,� he said, sliding the form back under the screen.

�I�m so sorry. All this. Forms. Explaining to everyone, I didn�t mean to snap.�

The Neurology team had emailed me the forms I now needed to submit to the bank and the driving licence place and what felt like the hundreds of other places that would now strip me of my independence all because of this stupid disease.

So when I�d handed him the form and he�s said, �but you look�� I�d presumed he was going to add �young.�

�Not that you don�t look young,� he said, clearly thinking I was some sort of crazy customer that he needed to keep placid.

I picked up the paperwork, and cheeks the colour of sunset left the bank. Why, even in death did I have to be so responsible? Most people wrote bucket lists that included bungee jumping and other fun things that I couldn�t even think of. Here was me, submitting paperwork to the bank that we�d had to bail out in the recession.

Before I�d had the genetic test, I hadn�t understood why someone would choose to not be tested. I felt so certain that I needed the knowledge, to hold the reality of my demise in my hand, but by relinquishing the freedom of waking everyday carefree I gained a perspective that isolated me. Everyone�s dying, but not everyone carries it around. For so long I imagined my diagnosis as a backpack that I now was forced to struggle to carry, like an explorer in a land I had never intended to visit.

I�d imagine myself hunted, chased, hiding from the truth. But the men I met along the way, the ones I didn�t date, didn�t give myself away to, didn�t fall in love with showed me that my power lay not with that one piece of knowledge, but with all the experience, education, friendships and fun that had led up to that point, and that would ultimately travel with me after the reality of my diagnosis sunk in. My diagnosis wasn�t the summit of my mountain, it just meant I had to plan better for the coming avalanche. After all I�m still here, to write these words that may be read by one more man along the way.

I am a truly unpublished writer, I only started word gush when my Neurological illness (Huntington�s unfortunately) began to steal my ability to type, something I�d never thought about before my diagnosis, but as I lost it the determination to write something, anything, became a necessity. I have a background in everything non-creative, health and safety, shop work, cleaning, but with my thirtieth birthday came a trial and error approach to sending my word gush for judgement, so here we go!

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