Rehab
Travelling down to Sussex from London was one of those times when I was really conscious of change. After four months elected coma and a further month of stabilisation, Emma was discharged from hospital. She had been taken off a life-support machine and was now breathing on her own without the aid of a pump. Her heart and lungs were intact and she could communicate by nodding and shaking her head. As far as I knew she recognised both Kenneth, and me, as she would respond to us both.
It was so wonderful to see her respond now when we asked her something, She still took her food by tube, (perhaps it was one sold by Lesley’s old boyfriend Reeves). The electric pump pushed mush into her stomach through the pipe that was fed through her nose.
Emma’s prognosis was good, very good. Her spine was intact and unharmed. All internal organs seemed to be in good working order. Her brain was the worry, yet all concerned were optimistic. The knock she had suffered was not the area that would really affect her motor or understanding. Perhaps some short and long-term memory blips, but nothing in any significant way. The doctors said that she would be ‘behind’ for some time, and that she would have to learn everything again, talking, eating walking etc. They said that it was as if the brain had gone into shock but with help could recover slowly but surly. The only real worry was that there was some brain pressure, but this would subside in time. It was time for her to move on, rehabilitation. This was deemed to be good for her and me. Guy’s could do no more for her; they had done their part well, incredibly well, now it was time for Emma to work towards the next stage, the back to ‘normal’ stage of living. I had been told that there was no reason why Emma could not return to normal life, and I believed them.
Still flat on her back with the ever-present tube in her nose and the monitor on her heart, she was loaded into the ambulance. I sat beside Emma in the ambulance along side a young nurse called Jenny, who sat at the foot of the transporting bed. It felt worryingly like starting school or a new job, yet all the same it felt positive, Emma was going to get better.
We saw the signs for Hailey hospital and my hands began to sweat. Jenny had been here a few times before and told Emma we were nearly there. She tickled her toes and Emma smiled, that crooked smile gave us all hope. Once we had turned of the road we had travelled at lease a mile up the drive to the hospital. A woman met us as we pulled up and into the drive to the ‘unit’.
‘Hello I’m Alison’. She had what we used to call ‘fly away hair’ curly and unkempt, it seemed to have a will of it’s own that nothing could control. ‘I am head duty nurse today, welcome to Hailey’. Jenny and Ralph the driver unloaded Emma from the ambulance, pushing her through to a reception area. There was a peace there, and only later occurred to me that the nurses and staff did not wear uniforms. Alison was dressed in a light floral dress that was rather too short but she was lovely to us both. I sat with Emma in the staff room, which was rather small. It seemed odd to have Emma laying there in the office beside the computer, desks and kettle.
‘Well my dear’, said Alison smiling genuinely at Emma, ‘we are so glad you have come to stay with us here. We have heard so much about you. I will show you round later, I hope you like your room. You will have one of the best here, the one that looks out over the apple trees’
Suddenly the door banged open revealing a boy of around 10, head shaved and dirty teeth. ‘ Mark’s stole my fucking CD player again, tell him Ali, tell him to give it back, or I will kill the cu…bastard’.
‘Now Sean where are you manners? And what did I say about bad words?’
The boy’s face relaxed and smiled, exposing a full set of yellow stained cigarette-butt teeth.
‘Sorry Alison I will put 50p in the box’ he said sheepishly
‘I will get your CD’ said Alison smiling ‘and tell Mark I will be into see him. Now be a gentleman and say hello to Emma, remember I told you she was coming today, and this is Emma’s Mummy Helen.’
I realised for the first time that Sean was sort of propped up against the door, leaning on to it for support. He limped over to Emma, instinctively I stood up to protect her. Alison raised her hand very gently to me, saying
‘It’s alright’
Sean wobbled over to the bed and held on to the side rail for balance.
‘Don’t lead anything to Mark, you wont get it back, he is a thieving bastard’.
‘Sean!’ snapped Alison. ‘Now what do you say’? ‘He glanced at Alison then turned to Emma.
‘Nice to meet you two, shall I show you round later?’ He leaned over Emma
‘There’s a swimming pool, I can swim now, but you have to wear a rubber-ring to start with-cos you might go under’.
We were shown to what would be Emma’s room and therefore her home for …well we didn’t know, but I had been told most who came stayed for at least a year. The room was just a square box really with windows along one side looking towards some overgrown trees. I had the room next door which was just as sparse, containing a firm hospital bed and a low cost wardrobe and chair.
Judy, the senior nurse arrived early for the night shift, wanting to be there for Emma’s first night. The tall erect nurse was friendly and evidently well respected by all the staff. She asked me to walk with her while Anna, one of the carers looked after Emma. It was high summer and nice to get out of the rooms and breath the fresh air. We walked to an abandoned church that was at centre of the small community. Judy explained the strange atmosphere of the place.
‘This was an isolation hospital back in the early 1900’s. It was like a small village really with this church, a small library and a few shops. There were hundreds of people here at one point, TB mostly. After the war the unit was used for other people, such as the thalidomide crisis of the sixties. This place was far far away, as nobody wanted to witness such a tragedy; it was convenient that way, so here they stayed. But that’s all gone now, and it’s just us left now. Emma’s lucky, this is a children’s Neuro Rehab unit being almost 21 and still in full time education she is still allowed here. The doctors didn’t want her to go to a geriatric stroke ward, I think she will do better here
Judy talked on proudly
’We have only eight to ten young people here at any time, and even then they are out numbered by the staff who work one or two to one with the children’.
Ten children in 40 acres of land, we walked down to the swimming pool and round to the riding stable, all still used, Judy explained, to a strong volunteer staff. It was all so quiet, I mean absolutely nothing. The unit itself was a long single storey building. At the centre was a large sitting room with comfy sofas and a TV and play area., to the left, the kitchens and physio rooms. To the right of the sitting area were the bedrooms, placed either side of a long corridor. Walking back to the unit we saw many rabbits just running free along the cracked tarmac roads, now spouting weeds and wild flowers of this ghost town.
‘There is no reason why Emma cannot be up and about in time you know, it does happen. You saw Sean-sorry about the language, if you saw the parents you would understand. But he came here, just like Emma, flat on his back. Now look at him, up and swearing just like before, only he doesn’t say the ‘c’ word anymore. It’s a bit like being born again, learning to talk, see, focus and then roll, crawl, then the hard painful first steps. It will be hard, I warn you, but the brain and body will want to start to recover by then, and Emma’s will, is the key to recovery’.
Apart from the creepy abandoned building, the empty shops and silent church it was nice there. Listening to Judy talk about recovery gave me an optimism I had long since forgotten about.
‘There’s Rick’, Judy said, waving to a leather glad figure steering a large noisily motorbike up to the entrance. He stood tall, at least 6ft one, and walked towards us taking off his helmet. The long hair now flattened, hung over the slightly pitted face. ‘Hi Rick, this is Helen, Emma’s mother’ enthused Judy. Rick nodded shaking my hand firmly.
‘Rick works nights mostly and is one-to-o
ne with Sean’ smiled Judy. I guessed he must be around forty, with broad shoulders, slim waist and nice smile…
The television was on in the sitting room. Anna was sitting with the other children. Mark, a good-looking 15-year-old boy with long scars running up his legs and like most of the other children there, scar at the back of the head. He was arguing with Sean about a card game. Lisal, Tina, Peter, and Grace sat watching Eastenders. I am introduced to all, they seemed happy and content, so of course that worried me. I had been content before, and I was frightened to let down my guard. As Judy walked me down to Emma’s room, I could hear all the children-even Sean signing along to the Eastenders theme tune as it finished.
‘Sorry, it’s a bit of a thing here, nobody will go to bed until Eastenders has finished, but it is a bit of continuity- specially for Sean and Mark where there is big trouble at home. Don’t worry, it’s not a secret, you will get to know all this when the parents come to visit, or don’t, which is even worse. Most of these children are from low-income homes. 90% of all RTA’s (road traffic accidents) are from poor families, low-income high-risk dysfunctional homes, it’s just a fact of life here’
Emma smiles as we come into the room, Anna had put the radio on for her and she looks content. A little later another nurse came on duty and with Rick put the younger children went to bed. Judy brought me some pasta for supper, and there I sat with Emma till the light over the apple trees faded. We both slept well. I woke to someone tapping on the door.
‘Hello, Helen? It’s Pat, the phsyio, we are ready to start’
I quickly dressed and nearly knocked over Linda riding a tricycle along the corridor outside my room. Pat was already in with Emma. She had wild black fuzzy hair and looked near retirement age. We said our hello’s, shook hands then the work began. She had all Emma’s notes, and was writing up a programme that she promised would have Emma ‘up and about in no time’
Later that day I would see; an OT, the House doctor, Psychiatrist, Speech Therapist, Key-Worker, Social-Worker plus all the care therapists involved in the support of Emma. There was an afternoon meeting with all staff to plan Emma’s health programme it was very involved, I was impressed, and this was the NHS! I would stay at the Unit for another month full-time, then come down at weekends, as I was due back at work. I had been in contact with my boss regarding my return. Kenneth and my sister said they would come down in the week to visit Emma whenever they could. I began to relax, even reluctantly feel confident that Emma would improve-even recover.
It is perhaps sad to admit, but along with my final art days with Emma, that month was one of the happiest of my life. Within the first week Emma was sitting up. Even this ostensibly small progress changed so much. Her eyes began to focus better. Her lungs began to drain clear and could begin to take in food orally. Being upright allowed her to see a family of wild cats would come and feed just outside her window every morning. This became a special time for us, as we would wait for the cats to arrive and devour the food. It was these little things that gave both Emma and me promise. I didn’t know at the time that Rick had set all this up, quietly leaving scraps of food on a saucer before the sun came.
The speech therapist would come everyday. She said that it was important that the sooner Emma could eat, the sooner she could talk, as the mouth muscles did both jobs. So I would feed Emma yoghurt while watching Eastenders knowing with every mouthful I was going to hear my daughter talk for the first time in almost six months. By the time I returned to work Emma was using a wheel chair and humming the songs the speech therapist would sang to simulate sound. Oh, and one more thing that happened, I had been for a ride on the back of Rick’s bike-with a skirt on!