Who Are You Now?

Sam Jevon

Scroll down
Press
K
to show keyboard shortcuts
Z
Previous chapter
X
Next chapter
S-lead

It is difficult to be understood sometimes because of the way I speak. Sometimes people say to me 'sorry, can you repeat that?' I do. I don't mind at all.

1 The biggest challenge

When I was a teenager, I wanted to be a policewoman, but I was no good! You needed higher maths and I wasn't very good at numbers. I enjoyed school but I had a lot of different maths teachers.

I started to play darts when I was about fifteen. That improved my maths because you have to take chalks. I used to be a good darts player. I used to beat the men!

When I was about eighteen I started drinking as well. I used to drink a lot. It was around then I met my husband. I married at twenty. I had my daughter, Jessica, when I was nearly twenty-one – the same age as when my mother had me. I was twenty-three when I had my son, Spencer. He has Asperger's and he was a nightmare when he was little. Bringing him up was the biggest challenge in my life.

I had to do it on my own. Their dad was useless. He left when Spencer was six months old because he couldn't handle him. He never understood my son because he is different. He should be proud of Spencer but he's not.

When I was out with Spencer when he was little, people would stare. I said, "What are you looking at?"

I never slept for four years because Spencer couldn't sleep at night. Because of his eyes, I think. He's got night blindness. The condition's called retinitis pigmentosa. My sister says I must have had a lot of patience.

SJ-7-kids-small-file

My parents have been very good. My mum used to look after my children so I could go out.

I've lived in Enfield my whole life; I'll be forty-seven next spring. My parents are separated but friendly. My mum lives with my sister, who is nine years younger than me. My dad lives twenty minutes away from me.

I have been divorced for twenty-one years now. A long time. I don't really want a relationship. Men are such hard work!

2 "If anyone will, she will"

I was a passenger in a car. I was sitting next to the driver and I wasn't wearing a seat belt. As it was summer, the window was open. When the accident happened the car rolled over and I came out of the window. I got the worst injuries. The driver got a broken shoulder. Apparently the person who went into the back of us had only been driving for a week.

All I remember is that I was going shopping at the time. I never got to go shopping!

It happened in 2006. In June this year it'll be nine years ago. My daughter was seventeen and my son was fifteen.

I was taken to the Royal Free Hospital. I was in a coma for a couple of months. I had a bolt coming out of my head. Because of the pressure, they had to take a bit of my skull out. I've got a titanium plate there now. It's a big plate - it covers quite a big area of my head.

After my injury my dad was talking to my doctor about whether I'd make it. The doctor said "If anyone will, she will." I've always been determined.

Regional Rehabilitation Unit

Discharge Report

16/01/2007

History

This 38-year-old lady was involved in a road traffic accident in mid-June last year. She suffered diffuse brain injury, including right subdural haematoma and a left temporal contra-coup injury [1]. She also sustained multiple fractures and right lung contusions.

She underwent bi-frontal decompressive craniotomy [2] to relieve intracranial pressure [3]. Her fractures were managed conservatively, i.e. no surgery. On admission to the Unit, she required prolonged ventilation and hence tracheostomy [4] and feeding via a gastrostomy (PEG) [5].

I went to Northwick Park for rehab. I saw a speech therapist. I had to improve my walking in the gym. They also helped me remember things. I used to do cooking there. I had to remember how long things need to cook for and what temperature they need to cook at. And measuring out the right amount of ingredients. I didn't know how to do those things. I am still improving now.

I was there for eight months. Jessica was born on Friday the 13th of January and they let me come home on her 18th birthday. It was better to come home to be with my children.

Regional Rehabilitation Unit

Discharge Report

16/01/2007


Discharge Plan

After rehabilitation, Sam still has weakness in all four limbs and trunk with poor head control, limb ataxia (tremor), right facial weakness, significant cognitive/communication difficulties, and severe dysarthria [6] and dysphagia [7]. Her swallowing has improved and she has progressed to a soft diet and thickened fluids [8] but her oral intake remains low and she still requires the PEG to ensure adequate intake of fluid and medication. Family members report being able to manage giving fluids and medicines via PEG.

Sam requires close supervision with food preparation – opening packets and chopping – due to her poor coordination and tremor. She needs supervision when walking up to 50m and physical assistance with anything longer than this due to her reduced balance reactions.

Sam is able to follow complex information (e.g. discharge issues, medical information) but may need prompting to recall information over time. She remains dysarthric. She is able to make her needs known and responds well to requests for clarification. She is able to read short paragraphs in large print. The legibility of her writing remains poor.

She will be discharged to her parents' home and plans to return to her own home in the long term. Her parents feel they are able to provide the care Sam requires at present. No care package is in place. Her social worker has referred her to a local day centre.

It was hard for my family: my mum, my dad, my sister and my kids. My son did not want to see me until my eyes were open. He was upset about what happened. He was frightened. Before my accident I used to sort a lot of things out for him. My daughter had driving lessons and my dad had to pay for them because I was in hospital.

For a long time my son and I couldn't speak about what happened. We've got closer again because we have the same occupational therapist [9]. She was a link between us. She could talk to him about me. He does understand me a lot more now. Like, recently I read a book. I read the whole thing. My sister said "your mum read that book." My son didn't believe that I had. He didn't think I could read that quick. I said, "I can do a lot more now than I used to be able to."

When he was little, I didn't know what he was going to be like as he got older. He's twenty-three now and you wouldn't know there was anything wrong with him. It's mainly social skills. With Asperger's, when they get something they are really good at, they focus on it. He's very good at computers.

When I went to his graduation I spoke to his tutor. He said that Spencer's very sociable and good at what he does and he'd definitely get a job.

Jessica studied languages. She's a translator at the moment and she's in three orchestras. She plays the viola and the clarinet. I'm not a musician. I used to play the recorder at school but when we all played in a group I used to pretend!

I think they've coped very well considering what they've been through. They both live in Sheffield. My son says when he comes to London he gets homesick! He did his first degree at King's University and his Masters in Sheffield. I speak to him on the phone. He used to be able to tell me everything. After the injury he couldn't but he can now. It has taken him a while.

Jesissca-graduation-small-file
Spencer-graduation-small-file-copy

3 I was awful

The accident has done me a favour in a lot of ways because, before, the doctor told me my liver was dodgy. I don't drink at all now. I was very angry and short-tempered. I was awful. A lot of people at the pub say that I was a nightmare. I was angry about a lot of things. Anything, really. But now, the only thing that could upset me is if anything happened to anyone in my family.

My personality has changed. I think I am very mellow now. I'm calm. In some ways the changes are a positive thing because I'm outgoing. I put myself out there and I don't care what people think.

I definitely think some things have improved since the injury. I could help my children out financially when they were at university because of the compensation case. I had a solicitor and a case manager who dealt with a lot of things [10]. My living situation has improved. Where I live now I've got my own garden. I live in an adapted bungalow. It's quite a nice area and I have good neighbours. From my new place I can see the tower block I used to live in when I was young.

SJ-2-balcony-small-file

I wouldn't describe myself as a disabled person at all. I'd describe myself as different – in the way I look and the way I walk. I walk with a bit of a limp. My voice is different, and my eyes - one is bigger than the other. Those are about the only differences. Physically, I look the same. Some people ask what happened to me. I have to explain. Some people think I had a stroke because of the way I walk. I don't mind telling people. I tell them what happened to me. How I was in the car, I wasn't wearing a seatbelt and it rolled over and that I came out the window.

The injury has never made me feel depressed. I was depressed quite a lot before my injury because of the way I was living; because I had to bring my children up on my own and I had to rely on my parents.

I tried to take an overdose three times. I didn't take a lot because I thought 'I have children to look after'. I went to my doctor and he put me on antidepressants. This was many years before the injury. I had to go and talk to someone. It helped, definitely, having someone to talk to. I felt better. I was still taking antidepressants years later, when I was in the accident.

Because I had depression before my injury, they wanted to make sure it didn't carry on, so I saw a psychologist for about six months. But I wasn't feeling depressed at all. I am still on antidepressants now because I had them before my injury. I did feel depressed sometimes when Jessica came to visit from university in Sheffield and then she had to go back. I missed her but I'm used to it now.

Neuropsychological Treatment Report

15th October 2007

Clinical Interview

Sam said her main difficulties are with her speech and balance. She said she is able to wash on her own but needs her mother to help her get out of the shower. She said she is unable to leave the home on her own as she may fall. She said she goes out with her mother on a daily basis. When I asked Sam about her vision she said she does not have any vision in her right eye but that her left eye is 'okay'. She said she is able to read the newspaper.

I asked about Sam's mood – if she felt depressed or low at times. She said no, she felt happy. I asked if she felt angry about the accident. She said no. When I asked what she felt happy about she said because her daughter has got into university.

I asked Sam about her cognition. When I asked her about her memory she said she does have difficulties but she was unable to specify exactly what difficulties she has. When I asked about planning and organisational difficulties Sam was not able to answer this question. Both Sam's parents report that her levels of insight and awareness are limited.

I've seen the hospital reports. It was a long time ago. I wasn't as good at sorting things out as I am now. My support worker says I'm very good at managing bills and budgeting now, for example.

I think the accident has affected my family the worst because I am not the same person I used to be. I used to help them out with filling forms in and everything. I can't do that now. And my sister, because she is nine years younger than me, I was like a mum to her. That's definitely changed.

Every time she had a problem she could phone me up and talk to me. She can't now. I can't give advice the way I used to. Before the accident I used to say what I felt but I can't say so much now. Well, I can say but I don't think they'd take much notice!

Like I said, I think I am living a better life. I think it has done me a favour, but I'm not sure my family would see it that way.

SJ-1-Mickey-small-file

4 Sam the Pam

My sister's got two children now. My niece and nephew are very funny! I see them once a month at least and I talk to them on the phone. My nephew's two and he can't say 'Hoover' so he says 'Hoo-a!' My son's called Spencer and he calls him 'Pence'.

My niece was born one year after my accident. She said "what happened to Sam?" and my sister said "she was in the hospital for a long time." My niece said "she is all right now." She doesn't know me any different. She called me Pam when I was little because she couldn't say Sam, so now I'm Sam the Pam. My family's sense of humour has helped me a lot.

SamthePAm

My mum and sister take me shopping. They've taken me to see musicals, like Rock of Ages. If they know I've been doing something, like a Headway art show, they'll ring me up and ask me how it went. I went to see Charlie and the Chocolate Factory and Matilda with my sister and niece. She's seven and she loved it.

I only have one friend that I've known from before. All the other friends disappeared. That is how it is after an injury - you find out who your friends are. It's their loss.

I have my support worker, Janet. She is my best friend now. She helps out with problem-solving. That's my main difficulty. For example, reminding me to check the dates on food if it tastes funny. She puts things into a different perspective. If I'm stuck with something, she'll say, "why don't you try doing it this way?" We go out socially to a local pub for the karaoke and we've been on a coach tour to Ireland.

I've got a lot of friends at Headway as well. I feel very good at Headway because people understand me. Everybody is in the same boat. I help other people that are here. They hold onto my arm if they need to and I walk with them. I help people spell words in Scrabble. And people who can't make tea, I make it for them and put a straw in. I make up quizzes as well, about music and general knowledge. I know a lot of musicians. If I hear a song, I can tell you who sang it.

I spend a lot of time in the art space. Sometimes I try to give other people ideas or I get them a pencil or a brush.

It gets better all the time. Definitely. You have to learn to accept the person that you are. And other people should try to understand you.

SJ-with-self-portrait
Self-portrait-cropped

Click here to see more of my artwork.

5 More and better

Over the years since the accident I've got my confidence back and now I'm very confident. I go out a lot. I just speak to people. People in the shop. People in the pub where I go, because a lot of them know me from before my accident. Quite a lot of people know me for my dad. He used to go to the pub quite a lot so people who know him know me. I don't drink any more but I still have a good time. I like to see everyone else making fools of themselves!

I am still in a darts team. After the accident I used to throw darts on the floor because of my balance. Now I can get them in the board. I have been to the pub quiz as well. We came last and the governor doubled our score!

I'd like to volunteer somewhere near where I live. In a shop, so I socialise with other people. I haven't yet. I don't know how to! I need to ask someone about it.

Some things from before my accident are coming out again. I can do quite a lot for myself. I like ironing. I liked ironing before my injury. I can put the washing in. I can do cooking. I progress every year.

I'd like to be able to do more for myself. Just more and better.

© Headway East London/Sam Jevon (2015). All rights reserved

  • [1]. Contra-coup injury: an injury on the opposite side of the brain from the point of impact, often seen in acceleration/deceleration head traumas (e.g. road traffic accidents). The causes of contra-coup injury are unclear but may be caused by the brain 'bouncing' back after the initial impact or by the displacement of cerebrospinal fluid, forcing the brain against the inside of the other side of the cranium Return to text
  • [2]. Decompressive craniotomy: removal of part of the skull in order to allow the brain to swell without being crushed Return to text
  • [3]. Raised intracranial pressure: increased pressure inside the cranium, a primary cause of secondary brain injury. After trauma, the brain swells like other body tissue due to increased blood flow. The skull limits the space available for swelling, meaning the brain is crushed if pressure increases too much Return to text
  • [4]. Tracheostomy: insertion of a breathing tube in the base of the throat. Used when a comatose patient is not breathing unassisted Return to text
  • [5]. PEG: percutaneous endoscopic gastrostomy. Insertion of a tube into the stomach through the abdominal wall to allow feeding when a patient cannot swallow Return to text
  • [6]. Dysarthria: reduced control of speech muscles, caused e.g. by injury to the motor or somatosensory cortex, the cerebellum, basal nuclei or brainstem Return to text
  • [7]. Dysphagia: reduced control of throat muscles causing difficulty in swallowing Return to text
  • [8]. Thickened fluids: if a person has dysphagia, they may be at risk of inhaling fluids. Thickening fluids by means of powdered thickener makes them easier to swallow and reduces the risk of inhalation Return to text
  • [9]. Occupational therapist: Occupational therapy provides practical support to enable people to facilitate recovery and overcome any barriers that prevent them from doing the activities (occupations) that matter to them. "Occupation" refers to practical and purposeful activities that allow people to live independently and have a sense of identity. This could be essential day-to-day tasks such as self-care, work or leisure (British Association of Occupational Therapists). Return to text
  • [10]. Compensation claim: a legal proceeding in which financial compensation is sought from the insurance company of the party at fault. Common after road traffic accident in which personal injury is caused and leads to loss of earnings or support costs. Such proceedings often take many years to settle and claimants with disabilities are typically allocated a case manager as well as a solicitor to help them in the interim – paid for by the insurance company Return to text