by Sue Cullen
Prior to 2000, I was a young, healthy woman who lived life to the full. I lived in Bristol after moving there to continue with my drama studies. I had been a performing arts student at Scopa.Liverpool and spent my evenings there rehearsing with both the Everyman and Playhouse youth theaters… I was bored with life in Liverpool and was looking for a change, so at 19 I left home for Bristol and never looked back…
Then I spent a year in London, child minding, a month in Florida doing the same and then from there I went to live in Italy for a year. At 21, I went to work in a gym and this was where I was to stay for the next five years. I found best friends at the gym, as well as colleagues. We ran a half marathon together for breast cancer, we had pyjama parties in each other’s houses and spent all our time together…. As our personal relationship was so strong our work one was reaping the benefits, and because of this the company went forward. The five of us were split up and sent to manage separate gyms around the country: Cardiff, Bristol, Manchester, Leeds. I was assigned Liverpool.
We missed each other, and we didn't do so well on our own but for money's sake we stayed. Eventually we all gave up our jobs and looked for something else.
I moved back to Bristol and took an office job. Three weeks in my life changed forever.
Out with my friends, without warning my left leg went numb. This numbness spread to my arms and face, then all of a sudden I was paralyzed and would be for the next two months. I was placed in a stroke rehabilitation ward, and after intensive physio, I could walk again.
This kept happening so from 2000-2001 my time was spent as an in patient at Frenchay Neurohospital Bristol.
I was diagnosed with Dystonia in 2001 and was told of an operation that could help me [editor's note: see below ABOUT DYSTONIA]. There is no cure, they said, but this op could help me lead a better quality of life.
There was one problem though: because the National Health Service was not convinced that the operation would work, it was not prepared to pay.
My surgeon agreed to waive his fee, so the lowest price they could offer me was £10,000 [editor’s note: about $20,000]. I had two months to raise the funds as my body was becoming extremely weak from the attacks.
We defied the odds and did it. And it was through fundraising I met Mat, love at first sight! ( HE ACTUALLY OFFERED TO TAKE ME FOR A WALK IN MY WHEELCHAIR!) So among the bad was something so good.
Mat stayed by my side throughout. I have had 6 operations in the last five years and still Mat is there offering his unfaltering support.
We have two beautiful sons now and together we form an army so I'm no longer battling this on my own. I have my three beautiful soldiers beside me!
No one knows what the future holds as the condition is not fully understood. I’m writing this because I want so much to raise awareness of it. I am busy organizing a charity night at the Casa, a pub in Liverpool, on March 24th: ACOUSTIC DREAM. I co-wrote a single called ANOTHER DAWN, with a friend in ITALY. I've done these two things to raise money for THE PARKINSON’S APPEAL FOR DEEP BRAIN STIMULATION.
I can no longer run, dance or get drunk but I can still dream and my dream is to raise awareness of this condition so that one day, DBS will be freely available on the National Health Service…
ABOUT DYSTONIA…
Dystonia is a rare neurological condition that can strike anyone at anytime. There are no known causes yet, although it’s believed that one of the factors could possibly stem from head trauma in childhood, or a parent carrying an identifiable gene known as DYT1.
The illness makes the muscles in the body contract and spasm, causing the body to twist into abnormal painful postures. Writers cramp is a form of Dystonia, so if you can imagine the pain of that, and how limited the wrist becomes…well.
We, the sufferers of this condition, all have different symptoms, Some are pain free and have a leg that turns in slightly; botox can be used to treat this, enabling the patient to walk normally. Others have a problem with the eyes refusing to open, thus rendering the patient periodically blind. Then there are sufferers who have “Generalized Dystonia,” me included.
Dystonia affects EVERY single muscle in the body. Without constant medical intervention, people like myself simply would not be here. My last relapse prior to brain surgery saw me in the hospital, feeding through a straw, with the doctors telling my family that unless I took a heavy cocktail of drugs, painkillers, and muscle relaxants, there was a danger the Dystonia could work its way into my heart. I took the drugs and was fine until it happened again and again.
That this illness can affect the heart is yet to be proven, as there are no known related deaths from Dystonia. A lot has still to be learnt about this condition. There are over 30,000 sufferers in the UK, and it’s up to us as a group to spread the word and invite people in the medical profession to conferences so they themselves can see how this illness affects us.
I can’t speak for everyone, as we all suffer with various symptoms, but I can speak truthfully of my experience — without wanting to put fear into anybody! Remember, fortunately, this is a rare illness!
Before surgery, I would be fine Monday, and then on Tuesday I would wake unable to move my legs and unable to swallow. My weight dropped off me as my muscles were constantly contracting…I suppose I should thank my affliction and be happy about having firm arms (and arse!) at my age!
Each time I relapsed, I was admitted to hospital until the attack had passed. Sometimes I would be twisted for up to a week, with intensive physio each day to try and unlock my muscles.
The only thing that could free me from the vicious circle of symptoms was DEEP BRAIN STIMULATION, refused me by the British National Health Service because there was not enough ‘proof of evidence’ that the procedure would work!
— Sue Cullen