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.
As a follow up to Nick’s story, published earlier in the week, here’s the same sequence told from Jayne’s point-of-view…
In October 2008 I was on top of the world. I was engaged to the perfect man and my acting career finally felt like it was taking off! I had been cast in my first role on the telly for the BBC working with amazing people. We were even filming at Dorney Court, an old house that I used to visit with my parents when I was a little girl. It was a ghost story set in the 1920’s and I had a small comedy role as a blonde flapper! I had auditioned for the lead and not got it but the producer, lead actor and writer were so kind (and I hope a little impressed) by my audition that they made a part for me. A part that was meant to just be a voice in the darkness got bumped up to a few lines and scenes. To say I was thrilled was an understatement. Filming it was a dream as I got to work with lovely people who are life long friends of mine and at the screening people jumped when they meant to and giggled at me when they were meant to as well. I was on cloud nine. It felt like the beginning of something. The first AD had me lined up for a short with another one of my acting heroes. All was good with the world and it hadn’t been an easy ride for me I had worked hard doing TIE and some thankless jobs after training. Also, as well as acting to keep myself afloat I did contract work in The City and ran two companies with colleagues, one organizing children’s parties and one trying to make playwrights and directors accessible called Write to Play.
I suppose as with so many things after such a high there must come a low and my goodness I was floored.
During my Christmas job that year, a show for children, the set fell on my head and age 26 my life changed it’s path forever.
I knew something was very wrong the day after the head injury. I couldn’t remember simple things at the hospital, was very dizzy and had the worst headache. I was told I had concussion and I needed to rest and it would get better. The headache lasted a week and then I got back to the show but was still falling over a lot so all of the bits up high were cut from the show and everyday I was helped by commuters when I stacked it getting to and from work. Not once was I left on the floor without a helping hand. And I was falling over a lot. Well done, Londoners.
Things stabilised for a bit and my main problem in the beginning came to be a lack of balance, vertigo. The floor just kept coming up to smash me in the face. And then the pain started. I would get terrible migraines two, three or more times a week. They would also floor me. The pain was so intense that putting a foot on the floor to stand up was agony. Still for a long time I kept going. I kept working (taking days off when I was desperate) and I tried to keep the fact that I was ill a secret. I thought it would destroy my career. I feel so stupid looking back because my career was already destroyed and I had just made it a very hard and lonely place for me by trying to pretend I was okay. When I couldn’t make it to things Nick (my then fiancée, now husband) was told to make up excuses for me. “Don’t tell them I’m ill”, I would insist. So he’d say I was busy. And to be fair, he wasn’t lying; to keep work going whilst being in so much pain was more than a full-time job. Things were so bad that during one show, a very kind actor had to hold me upright for most of a scene every night as the lights set my condition off. Still, I struggled on. Missing opportunities because I was so ill but still going…
Then, in 2011 the nature of my condition changed. It went from two or three attacks a week to unrelentingly permanent. The pain suddenly never left. There was no longer any respite. It was horrific. It would fluctuate so that sometimes I could do things, but every action was enveloped in pain. At times, I even lost the ability to find words.
Since 2011, I have been bed-bound up to five days a week.
I remember very clearly lying in bed with Nick one morning and saying I can’t do it. I can’t get up and go to work I am in so much pain. He is strong and told me to try and so I did. I kept working for about another four months including producing a workshop of a new play. I did my best to stay upright all day, but the moment I left the rehearsal rooms I wept with the pain that I had held in all day. It was terrible and something which I now wish I hadn’t put myself through.
I have a neurological disability caused by a head injury which means I am disabled and in permanent pain. I need help. A lot of help. I am constantly in and out of hospital. Lots of different hospitals but I am mainly treated for my head at the hospital for neurology and neurosurgery in Queens Square. You might not know it to look at me as although recently I have had to occasionally use a wheelchair I don’t ‘look’ disabled (whatever that’s supposed to mean). I think it’s better to say my disability isn’t obvious. But everything that I do is affected by it. There have been dark days when I have no longer wanted to be here because of the pain.
I have had to become reliant on the benefit system. This is a truly broken system that puts people who are very ill through hell. I know the telly is full of benefit fraudsters and the like. Please do not believe this utter nonsense. You have to be assessed in the most degrading way to get benefits for being disabled. It is completely disgraceful what the DWP put seriously ill people through. I have an extremely supportive family who have helped me through the process and to see my father crying as I answered the questions at an interview about how my illness/disability affects me will stay with me for the rest of my life. Imagining all the people out there without help or with learning difficulties trying to get help from the DWP makes me so sad. I don’t want to seem ungrateful, attacking the system that supports me and I am grateful that there is such a system in this country and happy that I paid into it for all the years I was working.
Still. Theatre, television and film… I love it. My passion won’t die. My husband is still an actor as well as caring for me with the rest of my family. He is one of the most talented actors I have ever seen and I am so proud of him for pursuing his passion.
I hope one day I will be able to get back to it. Somehow, someway as a disabled actor or working in a theatre that makes a job accessible for a disabled producer/director. At the moment it seems like a mountain that is too difficult to climb as I am so ill but I do hope something changes and that just as I was knocked off my feet in an instant I begin to live life more fully soon. For my own benefit. And for my husband’s. And for our son’s. He is my life. I love him more than I thought possible.
Unfortunately, with the birth of our son last year I sustained a fourth degree tear. Five corrective surgeries later and with a colostomy bag in place it’s still a long road to recovery. Dealing with additional health problems like this when you already have a disability is pretty savage and it is fair to say that medically this has been the most challenging year of my life to date. It is so humbling to see my family, my support system stretched to their absolute limits with my current additional problems but still putting my needs first and giving me the support I need 24/7.
It may sound dramatic but I think we all still grieve the old me. Holding down four different jobs, seeing my friends, getting out and about and acting/producing/directing. I have lost so much. And I think time is the hardest thing. When all I can do is lie in a hospital bed being pumped full of drugs and I really just want to be spending time with my boys. It does break my heart a bit. I miss the old me. But she is gone. What I have gained is a whole new perspective about how the world works. I took things for granted age 26. Now I never take one moment of happiness for granted. I relish every time I am able to do something or see someone. I hope I was never a particularly judgmental person but now I try to never pass comment on peoples’ situations. You simply do not know the silent battles and pain people are going through. I will always try to help people in any way I can as I have experienced first hand how much a smile, a message or a visit has helped me. I have had to swallow my pride and accept that help and I tell you what I wish I had been more honest about what had happened to me and asked for help sooner.
I must mention the actors benevolent fund who have given me so much help and support and just take the opportunity to thank Nick, Joseph, my family and all my friends. You’ll never know how much your love and support has meant to me. I hope my love of theatre will come to fruition again in my life. It is still my passion despite all that has happened.
Read Nick’s story here.
To donate, please click here.