WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
The Neck
Do not despair
look for support
talk to people
do not have negative people in your life
– Judy Reeves
THE ‘NECK’
My name is Judy and I am a 51 year old woman from the Caribbean. I have lived in London since 1966 when I came over to join my family. I attended secondary school here and had a few jobs including working as a reservations clerk for one of the then major hotel chains.
In 1981 when I was about 26 years old, I was in a bad relationship and had become homeless and unemployed. All these things were inter –related. I was living with a boyfriend having given up my hostel room, he decided to find another girlfriend while I was living with him but in the meantime, I had given up my job and taken up training under what was known as the YOPS scheme. YOPS was a government funded scheme to help people retrain and change careers. My reasoning was that since he had asked me to move in and marry him (he had proposed and bought a ring) I would have a change of jobs too. I gave up the job I had been doing for about 6 years to be trained as a shorthand typist. My world collapsed when the boyfriend decided he had found someone else and I was to move out. I was told this the week before I was due to start my course. It was in this backdrop that I first noticed my neck was involuntarily twitching and pulling to one side. It started with just a few twists and twitches. I wasn’t sure what was happening, the boyfriend started jeering as I was preparing a meal one day and he observed the difficulty I was having. I eventually rang a brother who had a wife and two children and asked if I could stay there for a while. I was hopeful of finding work after my training.
I didn’t go to my GP because the curious thing which was happening to me, I could not explain nor had I ever seen or known anyone else with anything similar. The twitching and twisting wasn’t constant at first and I managed to get through the 3 months of my course. I was still staying with my brother and his family but now signing on as I didn’t do very well on the course and could not find a job.
Eventually, I rang my ex-manager from the hotel who had moved to another hotel within the same chain. I indicated that I was desperate for a job and he asked me to come and discuss it with him and he offered me job. I felt this would help me. I needed more than anything to move as the relationship between me and my family was becoming very strained.
The day of my new job felt like the worse day of my life. From there on in my neck was twitching, shaking and turning and becoming increasingly worse every day. It was painful and I tried to compensate by stiffening up the muscles. I went to the GP. He was an elderly white haired gentleman with a dickie bow tie and very much from the old school.
He didn’t know what was wrong with me he said it was probably psychological and he prescribed some valium and an anti inflammatory medication.
By then I was in a terrible state emotionally as well as physically. I had just restarted work so wasn’t entitled to sick pay or even time off. I felt the strain of travelling on the busy underground to get from Willesden to Euston and back so I started taking a taxi to and from work. This was distressing since the money I earned each week was more or less spent on taxis. I would roll out of the taxi and tumble into the office each morning, collapse in a heap, floods of tears and bewildered colleagues not knowing what to do but being tolerant, respectfully inquisitive and generally being kind. Each trip to the GP brought me different antidepressants which did nothing for me at all. At night my head could not be stabilised on the pillow it was twitching and out of control and so were my emotions.
What really hurt, and I mentioned this to a friend a few days ago, was my young nice who was only about 8 at the time, refusing a trip to the cinema with me because of the way I looked. She didn’t say it but I knew and that hurt even now reflecting on it but now I understand it from her point o view.
I cannot recall every event in sequence but the GP sent me for physiotherapy at the local hospital; they didn’t quite know how to help. They did things like throwing a ball at me and I had to catch it. Then I was given a soft collar which only drew attention to my already self conscious being. I was given a hard collar which irritated my neck and added pain to what I already had and of course people were noticing and enquiring what was wrong. If they asked me if I had a stiff neck that was fine. That was ’normal’, everyone can relate to having a stiff neck. In a way the collars gave me a good explanation. Every time I went outside I felt that everyone was staring at me. Indeed some were. Just out of curiosity perhaps but it made me feel terrible.
One day I saw an advert at the back of the local newspaper for a woman who could heal all types if ailments so I made an appointment and went to see her. Well, she asked me not to tell her what was wrong because she could ‘see’, of course she could, it was a very physical thing. She told me that a member of my family had put a curse on me but she could help me. I needed to come back with £500 for the special candles and she would dispel the curse. Off I went with special herb tea she gave me to drink three times a day. I wasn’t desperate enough not recognise a charlatan preying on my vulnerabilities when I saw one.
I continued with the GP sending me here, there, everywhere and giving me different medication each visit. He kept telling me my problem was psychological and I kept saying that I would be happy to have psychological treatment. Eventually he referred me to a psychiatric doctor who asked me if I was taking drugs (recreational ones) the answer to which was no. She too was baffled by my condition but offered to find me a counsellor. The counselling would start in 6 weeks. I think the counsellor was away or that was the waiting list time. It was mixed emotions for me. Glad to have a different kind of help but 6 more weeks of what felt like hell on earth? At that point I thought I couldn’t wait that long and then who knows if it was going to help. I had accumulated most of the tablets the GP had prescribed so I took them with large swigs of whisky from my sister-in-laws drinks cabinet. I fell into a deep sleep on the sofa and suddenly woke up being violently sick. I confessed to my sister-in-law that I had taken the tablets and whiskey. Next morning the GP was called. In his patronising manner he wanted to know what I had ‘done last night.’ Then he wrote the name of the psychiatric hospital and told my brother to take me there.
I stayed there for three years as a voluntary patient on the psychotherapy unit. We had individual sessions, group sessions, art therapy, dance therapy, occupational therapy. Somewhere along the line I saw a neurologist who backed up what everyone else had said that i.e. it’s not a physical problem it’s psychological. The talking therapy apparently would be the best thing I was told.
I found asylum in the hospital, from feeling stared at and judged negatively, I felt among people who shared something in common with me. I was fine within the hospital but when I went to my brothers for the occasional weekend I hated being in public and the more nervous and scared I became my neck became worse.
No one had ever mentioned to me what the name of my condition was but I had found the exact symptoms which I was experiencing in a medical book so I knew what it was called. Spasmodic Torticollis.
Eventually the psychotherapy unit closed down and I left and started my own rehabilitation back into the community. I was managing fairly well with ‘the neck’ as I call it. The psychotherapy sessions continued at a local hospital. I found activities each day to keep myself occupied and eventually I found a job and moved from the group home to my own flat where I am now. I tried the Alexander technique soon after moving here but the woman who offered it said I was far too tensed for her to work with. I tensed up as a way of dealing with the spasms and twisting.
I have not had any discussions with my GP about treatments or anything to do with my dystonia. I had long since resigned myself to living with it. I have been able to adapt a posture which accommodates the ‘neck’ and a way of keeping my head still.
I have had some really low bad points with ‘the neck’. I have little confidence in myself, low self image/esteem which perhaps were there anyway but worsened by the constant struggle to hide my dystonia. I constantly feel that people are staring at me because I look odd. There was a long period of time when I became almost house bound had it not been for work. I was petrified to go out and some days just getting work was a nightmare. I get angry with myself for being like this. If it is a psychological problem then that indicates that it must be something I have caused. I have been to healing sessions at a church with a friend who thought it would help. I also tried to turn to god and started going to the church every Sunday.
Dystonia makes me feel emotionally and physically worn out. I constantly have to keep a hand under my chin to keep steady. A colleague recently commented that he had never seen anyone typing with one hand. I felt bad but I didn’t feel like explaining to him. I have kept down a full time job. My dystonia is a lot more stable at present, tiredness, stress, and anxiety effects how well I’m doing on any given day.
In my current job, I have recently been referred to see the occupational doctor because there are tasks I am required to do and I am not able to do them. I had not realised until recently that help, support and treatment were available. I happened to Google ‘spasmodic torticollis’ just to see what my manager would find if she looked it up. It has felt like a very lonely road till now. I had no one to talk to who had the same or similar experience. I have felt like a freak of nature.
My emotions are mixed at the moment. I am glad to have found a possible way of getting some treatment and being relived of ‘the neck’ but at the same I feel angry about being left to get on with it because it was ‘psychological.’
I am going to do all I can to raise awareness and to support other people who may be going through the loneliness, isolation and fear I have gone through.
