UPDATE 26/03/2016: Neurosurgeons have suggested Jayne have a neuro stimulator inserted in her occipital nerve, which if successful will reduce the head pain. In order that Jayne may travel to the US and have the treatment trialed before having the implant permanently inserted into her body, a crowdfunding campaign has been set up. To find out more and donate, please click here.

I want to tell you a story. A story about a callous young man and his turning point.

For most of Nick’s life, he was callous. Everything he did, he did with a sneer. A detachment from the event. He was above it, wafting his critical eye over it. Using his wit to successfully distance himself from things, people and himself. How wonderful he thought he was…

During his callous youth he became an actor and had varied success. Pushed on by his talent but hindered by his belief that talent was enough. He was young. He was carefree. Careless. During his callous youth…

Nick did some corporate theatre in his spare time and one of the things that he explored there was turning points. Things that happen in your life that somehow change you or the course of your life. It’s an exercise to do with presence. Being present.

Nick’s turning point had to do with disability.

Disability. Something most healthy people don’t dwell on unless faced with it. For most it is something that happens to someone else. Nick’s mind would always think of people that were born disabled, that didn’t know any other reality. Either that or maybe a soldier that had had their leg blown off. I hadn’t really given it much thought. Did I mention I was a bit callous? Oh yeah. I forgot to mention: I was Nick…I am Nick.

My girlfriend’s name back then was Jayne. Much the same as my wife’s is now.

Jayne was on stage around eight years ago when a piece of stage set fell on her head. She tried to finish the show (a consummate professional) but was too loud and can’t really remember doing it. She felt sick and dizzy. A few days later we went to the hospital where they told her she had mild concussion but should eventually feel better. The thing is, she never did.

Jayne started having terrible migraines two to three times a week. (a side note here: a migraine is not a headache, it is so much worse. It can take many forms but needless to say the pain is unbearable, it can make you dizzy and disorientated and,here’s the killer: there is very little you can do to alleviate the pain). These started interfering with her work. At this time. Jayne had a budding acting career which had just included a great part in a BBC drama, she ran two companies that she had founded herself and worked a part time job in The City. In short, Jayne was driven. Living her life to the full. But then she had to start cutting her workload down and taking a lot of time off. Jayne was struggling. She gave up the job in the city and was scared about accepting acting work as she didn’t want to let anyone down.

Then, one day, Jayne had her turning point. Much like Nick, her turning point had to do with disability. Although her turning point was not one of self realization, but of harsh reality.

Something changed and Jayne’s pain became permanent. 24 hours a day, 7 days a week. She would still get 2 or 3 bad bad spikes a week but in between the pain just wouldn’t fully go away.

We have tried what seems like every treatment that the doctors have to offer and yet here we are, in this present day, living with a disability. Nick and Jayne’s lives changed. Our lives changed. By disability.

I am an actor. Since the turning point, I’ve also been a part-time carer and am head over heals in love with someone that I have no power to help. A feeling of terrifying impotence.

This event in my life has helped my acting and hindered it. Hindered in the sense that I have to consider my wife when I am considering jobs. Can I be away from her for too long? Do I want to be? Can she cope? Who will cook for her? Help her take care of our child? In short, who will look after her? What are we going to do?

But there are positives. There has to be. Otherwise how could you go on? Nothing frees you up as an actor like having the fragility of life shown to you every day. So many people suffer. The body is so complex; doctors know so little about us. Seeing someone so desperate to be better, so desperate to just appreciate the little things, unburdened by pain. That’s a real motivator. Most of us are so lucky.

For better or worse, my emotions are nearer to the surface; I find it easier to let those emotions pervade my body when I’m performing – something I could never do before. I am closer to the edge and for an actor this is an unbelievable place to be. I’ve gone from being a cerebral actor to an emotional one and I can’t even pinpoint exactly when, but I think I know what emotion triggered it. With me this was a slow burner but it got me in the end. Grief. That complex emotion that everyone is scared of whether they’ve felt it of not. Mine and my wife’s grief was for our lives as we knew them. As every medicine and procedure failed, as we tried more varying homeopathic remedies, as we started to receive benefits that eventually included the PIP total disability benefit. (for anyone not in the know, this is the one they give you when they concede that you’re not going to get better, so getting it caused a lot of mixed feelings). There was some anger but really there was just grief. Also, on my part, for the bubbly, driven and really quite unique woman I had first met. Don’t get me wrong, she’s still there and her wonder and gentleness still floors me, but its like she’s in a cage made of pain. A cage that she may have to spend the rest of her life in.

There once was a callous young man named Nick. He feels such a stranger to me now. The same but totally different. Just as Jayne isn’t the same Jayne. I’m not callous. About anything or anyone. I concede it has affected my acting. But I assert that it has changed my life. And for me, that’s so much more important.

Read Jaynes story here.

To donate, please click here.

Nicholas Waters

Actor. Singer

Barman. Barista. Mixologist. Waiter. Teacher. Facilitator. Kitchen Porter. Shop assistant. Office runner. Production runner. Usher. Office boy. Bookseller. Events organiser. Cook. Labourer. Landscape gardener. Maitre D. Box packer. Box unpacker. Backpacker…Alpacca?