I was a happy, normal 13 year old girl. My biggest worries were whether the spot I’d just found on my forehead would be obvious, why my boobs weren’t as big as my friends, why my Mum wouldn’t let me wear thongs when Beth’s Mum let her and whether Danny was going to the party on Saturday, and what I should wear to impress him and why did he always play football instead of standing with me when he was supposed to be my boyfriend!!
That all changed a few weeks before the end of the school year. I woke up one morning feeling awful, I felt sick and had a headache, and I just felt horrible. When I told my Mum she said I’d be fine once I got to school so off I went. By mid morning I was feeling worse, my head was banging and I hurt all over so I was sent to the school nurse who called my Mum. When she picked me up I looked white and could barely stand so she took me straight to the Dr’s. The Dr examined me and said I had the flu, he advised bed, paracetamol to bring down my temperature and take away the pain and to drink plenty of fluid. When we got home I got changed into my pyjamas as my school uniform was soaking wet from sweat, took 2 tablets and I went to bed.
In the afternoon my Mum came to check on me, my temperature had gone up, my neck was stiff, I hurt all over, and I’d started being sick so my Mum called the Dr again, he came round and again said I had flu, and just gave us the same advice he had in the morning.
In the evening I was even worse, the room was spinning, I couldn’t move, I was in agony and had a temperature of 42, so the out of hours Doctor was called. This one was a bit better. She diagnosed a virus, gave me some antibiotics and told my parents I’d be fine in 24-48 hours. That’s the last thing I remember, and I only just remember that. I was told the rest by my parents later.
My Mum came in the next morning, she tried to wake me but couldn’t, when she pulled the bed sheets of she saw I was soaking wet and now had a purple rash on my arms and legs. She immediately called 999. The ambulance was there in minutes. They carried me out, put me on the stretcher and told my Mum to grab some keys and money as they were going straight away. The paramedic put a needle in my arm, gave me some drugs and fluids and I was taken to A&E on blue lights as I was still unconscious. On the way I had my first cardiac arrest.
I woke up 6 weeks later in Paediatric Intensive Care. Though I didn’t know where I was, I was aware that I had a tube in my throat and that someone was just of to my left. I tried to talk but couldn’t. My Mums face appeared over mine, she was crying but smiling and saying hello and telling me not to worry. She then called over to someone. A nurse appeared and said she’d get the Doctor. A couple of minutes later a man in theatre scrubs appeared, he told me that he’d take the tube out of my throat. He detached the tube from the ventilator just leaving the one in my throat, told me to take a deep breath and then breathe out hard, as I did that he pulled the tube out. The nurse held a cup with a straw near my mouth and I drank a little, then she put some tubing round my head with 2 little prongs in my nose, she told me it was oxygen. The Dr was back above my head smiling.
“Welcome back Jessica, I’ll give you some time with your Mum, the nurse is calling your Dad, when he’s here I’ll come back and have a chat with you, ok?”
“Ok.” I said softly, “Thank you.”
My Mum leaned over me, kissed me on the forehead and cuddled me. I tried to cuddle her back but I couldn’t, my arms wouldn’t move. I started to get worried but then told myself it was the drugs Id been on and I’d ask the Dr about it.
“What happened?” I whispered to Mum.
“Wait for your Dad and the Dr.” She replied and then carried on cuddling me.
This really scared me, what had happened to me. I then started to notice my body really didn’t feel right. I could feel the sheet on my stomach and chest, but not on my arms and legs. I tried to move my feet but I couldn’t. Neither could I move my knees in fact I couldn’t feel or move any bit of my legs, it was the same with my arms. I really was starting to panic now. My Dad then walked into the room. I started crying.
“Dad, what’s happened to me, why can’t I move?” I sobbed. He came over and kissed me.
“Later sweetheart,” he whispered.
At this point I became hysterical, shouting as loud as I could, trying to move and crying inconsolably. The Dr came over, I saw him put a syringe into the tubes coming out my neck, I hadn’t noticed those earlier. Before I had a chance to argue I went to sleep, he’d sedated me.
When I woke again it was dark outside, I was on my own. I suddenly remembered earlier, I tried again to move and feel my arms and legs but I couldn’t. I called out, no one came so I called louder, I heard the door open and tried to sit up but I couldn’t. My parents appeared above me, they kissed me and told me to try to stay calm this time and the Dr would be here soon.
The Dr I’d seen earlier came into the room a few minutes later.
“Hello Jessica, I’m Dr Peters, you can call me Alex, ok? Would you like to sit up a bit?”
“Please.” I replied softly.
He checked the sheets would stay up to my neck which I thought was odd, then he pushed a button on a remote control and the head end of my bed down to my waist moved up until I was sitting on my butt, I remember thinking that there was an odd sensation down there but just put it down to having not sat for a while.
“Right Jessica, you’ve had something called Meningococcal Septicaemia ok. Have you heard of Meningitis before’?
“Well you’ve had a strain of that caused by Meningococcal bacteria along with Septicaemia which is the medical term for blood poisoning. And before you ask, we don’t know how you got it, but we have now vaccinated everyone in your school to make sure they don’t get it.” He smiled again. He had a nice smile.
“Meningococcal Septicaemia can affect different people in many different ways and I’m sorry to say, you seem to be one of the worst affected people I’ve dealt with Jess. When you arrived at your local A&E you were in cardiac arrest, fortunately they were able to stabilise you. They then called on our services, we came to your hospital, assessed and treated you as best we could and then brought you back here to Great Ormond Street in London. When we got here we took you straight to theatre where you had another cardiac arrest. If you find your chest is sore that’s because we had to put you on a by-pass machine. Fortunately we were able to revive you and then we performed the life saving surgeries I’ll tell you about in a bit.”
I could feel myself starting to panic again. Surgeries. What surgeries. What had they done to me?
“We then brought you down to the PICU here.” Alex continued. “You had a 3rd cardiac arrest and again we managed to revive you. You were starting to go into multi-organ failure as the infections were working harder than the drugs we were giving you so we put you on ECMO, which stands for Extracorporeal Membrane Oxygenation and dialysis. Basically these take over the functions of your organs allowing them to rest. You were kept on these machines for 11 days by which time your body had recovered enough to look after itself. Then after that we waited, you remained intubated, which was the tube down your throat I took out when you woke up, but other than that we just waited for you to wake up. All in all you were in a coma for 6 weeks and 3 days. Now here’s the hard bit. Unfortunately Jess, because your GP misdiagnosed you and there was such a delay in getting you treatment, by the time we got to you in A&E the infection in your limbs had destroyed them and your arms and legs were poisoning your body. We gave you strong antibiotics in A&E and waited until we got here to GOSH to see if they would work, sadly they didn’t and your heart wasn’t able to cope with the toxins coming from your limbs, this is what caused your 2nd cardiac arrest. Between the surgeons, your parents and myself we took the decision to amputate your limbs to save your life. I’m very sorry Jessica but you are now a quadrilateral or quadruple amputee.”
“What do you mean?” I asked, not sure I’d heard him right.
“They removed your arms and legs Jess,” Dad said softly with tears in his eyes.
“What, all 4?” I asked incredulously.
“Yes, Jess, all 4.” Replied Dad.
Amazingly I wasn’t upset by this, in fact I’m not sure I really felt anything at all.
“Well how much of them are left?” I asked Alex “Nothing I’m afraid Jess, the septicaemia had killed you’re entire limbs. They were all gangrenous and necrotic so we performed a bi-lateral hip disarticulation on your legs which means they were removed at your hips and a bi-lateral shoulder disarticulation which means...”
“You removed them at my shoulders.” I interrupted. “Yes.”
“Ok, when can I go home Alex?” I asked.
My parents and Alex all looked shocked at this. “It’s a bit soon isn’t it honey?” Mum asked.
“No, why is it too soon? They can’t do anything else here for me can they? They can’t attach new arms and legs to me can they? Alex said my body had recovered so why can’t I go home?”
Mum and Dad didn’t know what to say, they both looked at Alex who still looked a bit shocked.
“Erm, well no, you’re right, there’s not much we can do for you here that your local hospital can’t do, but you do need some rehab and monitoring for any other after effects.”
“Like what?” I shot back at him.
“Well. Like seizures, speech problems, learning difficulties, clumsiness and co-ordination problems, weakness, paralysis and spasms of body parts.”
“How can I suffer from clumsiness and co-ordination problems, and what parts of my body can spasm, you cut off my arms and legs!!”
“Ok Jess,” Alex replied slowly. “Once we can get counselling and rehab arranged at your hospital we’ll send you back there for a bit, but I’m not discharging you home, not yet, OK?” He looked at my parents, who nodded, then he walked out, my Dad followed him.
“I just want to be somewhere I know, and see my friends.” I turned my head to my Mum. “I know things can never be normal again but I want to get back to as normal as possible, you know.”
“I know sweetheart.” She cuddled me.
“Mum, would you take this sheet of me I want to see my body?”
“I think it’s a bit early for that really.”
“I don’t, it’s been over 6 weeks since they amputated so they’re not going to be horrible and bloody are they? Have you seen them yet?”
“No.” Replied Mum. “Are you sure you really want to Jess?”
“Yes, very sure.” I looked her in the eyes.
Mum took the top of the sheet, and pulled it off me being careful not to pull the central line coming out of my neck and PEG feed coming out my tummy. When the sheet was completely off she looked at me. She was trying to hide the shock in her face but she didn’t do very well. I looked down and realised I was completely naked. I looked at my shoulders. There was just a small pad on each side where my arms had been. The top of my shoulders were now a lot shorter and rounded off at about the same angle as my shoulders would have but were level with my chest. Where my legs were attached was covered in larger pads, my hips just seemed to continue round then levelled of at the same level as the lips of my vagina so if I sat straight up I would sit on my vagina lips. In between my hips a catheter came out. I asked Mum to get me a mirror. She went of to the nurse’s station while I carried on looking at my new, shortened body. Mum came back after about 5 minutes with a full length mirror which she put at the end of the bed. I sat and stared at myself, my hair was a mess, it was all greasy and needed a good brush, I guess I’ll have to get Mum to do that for me now. I continued staring. I looked tiny. I was just a torso with a head. It’s amazing how much of your size is in your limbs. I then got Mum to move the mirror to my side and take the pad off my shoulder. She did this and I turned my head and stared again. The scar where my arm used to be was a very neat, red, kind of X. Each line was only about 2-3 cms. I was amazed at how tiny the area where your arms attach was. I then realised my boobs looked huge from the side now, I smiled. Mum stuck the pad back on. Then it started, what I think my parents had been waiting for since Dr Peters told me, the crying came. I couldn’t stop. It was like floodgates had opened. Mum put her arms round me, picked me up and put me on her lap. Dad came in, sat on the bed and cuddled us both, for a second I felt odd being naked around my Dad but that soon passed as I carried on crying. Both my parents then started. I felt so tiny and helpless as we sat there, I couldn’t even wipe the tears from my eyes.
We sat there for about an hour cuddling and crying. Once I’d stopped Dad wiped my tears with a tissue, kissed me again and told me he loved me no matter what.
“I know what will make you feel a bit better.” Mum suddenly said. She then stood up and passed me to my Dad.
She came back in carrying a bowl of hot water, a flannel and some soap.
“You can’t have a shower or a bath just yet but I thought a good wash would help.” She then smiled.
Mum laid me on my bed and wiped me all over with the warm flannel, then she put soap all over me, laying there wet while she rinsed of the flannel I could feel a light breeze on me and I got goosebumps all over, she then washed all the soap of me, I felt odd when she washed between my hips though. She then rolled me so I laid on my front, not having arms to support me meant my weight (what there was of it) was all on my boobs, I said “Ow” and told her, she apologised and rearranged my boobs for me. That felt very odd but I guess I’ll have to get used to it. She then washed my back and bum. Afterwards she put a towel over my back, rolled me over and wrapped me up in it. Then she picked me up and carried me like a baby over to the sink. She ran the water until it was warm, held me over the sink and my Dad filled a jug with the water and poured it over my hair, he repeated this a few times until it was all wet. He then got some shampoo and gave my hair a good scrub, then rinsed all the shampoo out with the jug, checking the temperature each time. Once it was all washed out he got the conditioner out my Mum’s bag and put some on my hair, then rinsed that out. After that he got another clean towel and dried my hair. Mum then carried me over to the chair and sat with me on her lap. Dad left the room again and Mum and I sat in silence for ages.
Suddenly Mum broke the silence.
“I am so sorry Jessica.”
“For not believing you when you said you were ill, for not pushing it when the Dr said you just had flu, for not checking on you in the night, if I’d found you like that earlier maybe you would still have ... maybe this wouldn’t have happened to you.”
I could see the tears in her eyes again.
“Don’t be sorry Mum.” I told her. “This is not your fault, you couldn’t have done anything, I don’t blame you, it’s that fucking rubbish GP’s fault.”
“Jessica, don’t swear.”
“Sorry, but it’s true, we should complain about him, it won’t help me but I don’t want this to happen to anyone else Mum.”
“Ok, we’ll sort that out later.”
A nurse then came in and changed the sheets of my bed then checked all my observations. After she’d done Mum put me into bed then kissed me good night. I fell asleep in seconds.
I woke up the next morning, it was a beautiful sunny day, Dad was there but Mum wasn’t. He heard me stirring.
“Morning beautiful, it’s a lovely day out, how do you feel?”
“Erm, fine, I guess. Could you open the curtains please? Where’s Mum?”
As he opened the curtains I could see the sun coming through, I had to squint against it.
“I sent her back to the hotel, she was exhausted. Is that too bright?”
“No, it’s lovely.”
“Morning.” A big West Indian nurse called Alice chirped as she walked in the room. “Good news, Dr Peters says we can stop using the PEG feed and you can start eating again, what do you fancy?”
“Errr, just cereal I think.” I replied.
“Ok, we’ve got most of them, any particular one?”
“Ok, I’ll be back, would you like anything Mr Bindon?”
“No thanks, I’m fine with my coffee.” Dad replied nodding at the steaming mug on a table.
“If you’re up to it I thought I’d bring your brother and sister over later,
they’re dying too see you.”
“Yeah, please do, I’d love too see them.”
“Good, I’ll get your Nana to bring them down then.
Alice came back in with some Weetabix and orange juice, she put them on the table and asked Dad if he wanted her to feed me, he told her we were ok and he’d do it. He then came over, used the remote to put my bed up and sit me up. He then sat in the chair next to the bed, grabbed the spoon, put some Weetabix from the bowl on it and started to feed me.
“It’s been a long time since I did this.”
We both smiled at each other.
“Thanks Dad.” I whispered.
He carried on feeding me, I watched his face while he did, he hadn’t shaved for a while, his eyes were red and blood shot from where he’d been crying and not sleeping. He looked a lot older than I remembered.
“I’ll be alright Dad.” I said softly.
“I know you will be sweety, I know.” And he stroked my hair back.
Once he’d finished feeding me, Mum and Dr Peters walked.
“Morning.” Mum said as she kissed Dad then me. “Alex has got some good news.”
“Morning.” Said Alex. “Yes, I’ve got the results of the CT scan and EEG you had while you were in the coma and they’ve come back normal, as far as the neurologist can tell there should be no long term effects.” He said, then suddenly embarrassed he added, “Apart from the obvious that we already know about. Sorry.”
“Also.” He went on. “We no longer need the PEG feed and central line so we’ll get them taken out. If you want to I’ll have your catheter removed aswell. And, if you’re up to it I’ll let your Mum and Dad take you outside, how’s all that sound?”
“Great, thanks.” I replied.
About an hour later another Dr in scrubs came in with a nurse, he explained he was going to take the central line and PEG feed out. He asked my parents to leave, laid me back, pulled the sheet down to my waist and put a sterile drape over my head, chest and stomach. It took him about 10-15 minutes to do the procedure. Afterwards he covered me up with the sheet and sat me up again. As he left I thanked him and my parents came back in with Alice the nurse.
“Do you want that catheter out now?” she asked.
She emptied the catheter bag, then lifted the sheet up to my waist. I could feel her doing something around my bits, it made me feel all tingly. Then she was done.
“There you go Miss Bindon, you should feel more comfortable now.”
“Thank you Alice.”
“That’s alright darling, make sure you shout if you need to go ok?”
Mum then pulled the sheet back, if I had had arms I would have covered myself but as I couldn’t I just laid there for anyone to see. Out of her bag she got a pair of knickers, a bra, a pair of shorts and my favourite Faithless t-shirt. She then dressed me in them, put my hair up in a pony tail and then brushed my teeth. I noticed that the t-shirt sleeves now hung of my shoulders despite the top being small and tight fitting and the shorts just flopped were my lap used to be even though they would have been very short shorts. Then Dad came in with a wheelchair, quite a cool looking one in my favourite colour, purple.
“We bought this for you, hope you like the colour.”
“It’s cool Dad, thanks.”
He then came over, picked me up and put me in it, put a belt around my waist and then put a blanket over me. He stood up walked around the chair and pushed me out as Mum followed.
“Have fun and don’t be too long.” Alice called as we walked past the nurse’s station.
As we walked through the hospital I noticed that I actually was sitting on the lips of my vagina. Every time we hit a bump I got a feeling through my body I’d only experienced once before, just before I was ill. We’d had a biology lesson at school and that night in the bath I decided I want to feel what my vagina was like. As I was stroking and feeling I discovered I liked certain areas being stroked more than others so I concentrated on these areas and masturbated myself to my first and very powerful orgasm. As I was being pushed I was getting those feelings again. We walked out the hospital into the outdoors, I took some deep breaths and tried to ignore the feelings but it got harder. I found the fresh air felt wonderful in my lungs and on my face and neck but also made matters worse. As we walked we found one of the many squares around that area of London, I think it was either Tavistock or Russell. Dad wheeled me over to a bench where he and Mum sat. I finally managed to control myself though I was on the brink of coming. I even had to ask Dad to take the blanket of me as I was so hot I was sweating. After he did I noticed a lot of the guys and some women were staring at me, I started to get upset but stopped myself and thought to hell with them. Dad noticed the stares too.
“Do you want to go back, or have the blanket on?” He asked.
“No.” I replied. “I’ve got to get used to people looking might as well start now.”
“Ok.” He smiled.
The 3 of us just watched as all the office workers came to eat lunch and meet friends. After a while Mum’s phone rang. She went off and chatted on it. When she came back she said it was Nana and they had just got of the train at St Pancras so we’d better head back. Before we left I asked Dad to adjust my position, so I was laying back slightly, I told him that I my hips ached but really it meant I wasn’t sitting directly on my lips. This time Mum wheeled me back. As we walked along we went past a group of kids about 15 or 16 years old. They all stared as we passed, then I heard them saying I was a freak, my Dad was going to go back to them but Mum stopped him.
As we walked back into the ward Alice saw us.
“How was the walk?”
“Alright apart from a few arseholes at the end.” I replied “Don’t you worry about them,” she said. “You’re still beautiful, and I bet you’re more intelligent and will come to more than they ever will. By the way, you got guests.”
“Thank you Alice. Do you know when Alex Peters will be around, I want to ask him something.”
“After clinic, about 4, is that ok or do you need me to page him?”
“No, that’s fine. Thanks.” Mum wheeled me into my room. Nana was there with my big brother Andrew and my little sister Olivia. Andrew and Nana came straight over to me and gave me a big kiss and cuddle, but Olivia was a little scared until Dad took her hand and brought her over to me and picked her up, then she put her arms round me and gave me a big cuddle followed by a sloppy kiss. Dad put me back to bed then Nana and Olivia fed me my lunch and then we sat and chatted for ages until I fell asleep.
When I woke it was dark outside and my family had gone. I could hear Alex Peters” voice and it was getting louder. He walked into my room.
“Evening Jess, sorry I didn’t come up earlier clinic went on late then I had to go out on a retrieval. I have some good news but first Alice told me you wanted to see me, how can I help?” He asked as he sat the bed up.
“Erm, yes. 3 questions really, first I noticed I seem to be getting very hot and sweating a lot, in fact I’m sweating now. I noticed it was bad when I was laying here naked with just the sheets over me. Now that I’m dressed and have been doing things it’s dreadful.”
“Well Jess.” Alex started. “It’s all to do with body surface area. You see being a quadruple amputee you have a much smaller BSA than an able bodied person, or even a single or double amputee over which to lose heat, so your body sweats more. Unfortunately there’s very little we can do about it. Sorry. What was your next question?”
“Err, well, it’s a bit embarrassing really.” I could feel myself blushing and getting hotter.
“Don’t worry, Jess, I’ve heard it all before, just tell me in your own time, ok?” He smiled “Well, I noticed that when I got taken out in my wheelchair earlier.” I got redder, “I was sitting in such a way that meant ... well I mean, erm, having no legs means I’m sitting on bits I’ve never sat on before and, well, err every time we hit a bump, I errr.” My voice trailed off, “ I found I ... Enjoyed it. It made me feel nice, down there.” I nodded downward. “It kinda turned me on, kind of.” I was so embarrassed.
“Ok, that’s not normal but not unheard of after an amputation like yours, if it’s ok with you and only if you want me to, I’ll get a nurse and I’ll examine you to rule out any damage down there from the either catheter or surgery and make sure you’re not going to cause any further damage either, ok. I’ll call your mum too or do you...
“Hell no.” I interrupted. “Please don’t call my Mum, I’d die if she found out.”
“Ok Jess, I won’t call her. Do you want me to examine you?”
“Please.” I replied still red.
Alex went out and came back with a nurse and some equipment. He explained what he was going to do. Then he pulled the sheet up to my waist. Pulled my shorts and knickers off which I noticed came of very easy. I could feel as he slid the instruments into me, it made me wince and get goosebumps. Once he was done he put the instruments on the tray, got a towel and wiped me and started to put my knickers back on me.
“Please leave them off.” I asked, I get too hot with them on, could you take my top off too please?”
“Yes, Ok, Jess.” He turned to the nurse, “Would you mind.” He then slid the sheet over me. The nurse came over, pulled the sheet down and took my top and bra off.
“Is that better?” She asked.
“Much better, thank you.” I replied.
“Well.” Said Alex, I can’t see anything wrong, It’s something you’ll just have to put up with I’m afraid, like the sweating. Though you’ll probably find that in time you’ll get less sensitive to it and the problem will go, ok? What was the 3rd thing?”
“This may sound stupid, and I know I’m young and shouldn’t be thinking of things like this but will I be able to have sex, not that anyone probably would want to, but you know, just in case?”
“Of course you can.” Alex said as he sat on the edge of the bed. “There is absolutely no reason why you can’t have a full sex life, and having had meningococcal septicaemia or being a quadruple amputee should not affect your ability to conceive. I know of a number of survivors and quad amputees who have gone on to have families, ok. And besides, any guy would be lucky to have you.” He smiled.
“Ok, but what about giving birth, “cos when you watch films and telly the lady’s always got her knees up or ankles on a weird contraption with her legs wide open and I can’t do that.”
“Don’t worry Jess, when the surgeons removed your legs they moved your hips and buttocks into a kind of permanent sitting position, primarily so that sitting straight shouldn’t be a problem but another advantage is that it opens the vagina and pelvis up so you should be able to deliver a baby naturally. Ok. Anything else?”
I shook my head, then as Alex got up to leave,
“What was your good news?” I asked.
“Oh yes.” He stopped and turned. “You’ll be leaving us tomorrow. I’ve arranged everything at your hospital, transport’s booked for 11am. I’ll be here to give you all your aftercare and say goodbye ok?”
“Yes, thanks Alex.”
“Good night Jessica.” Alex walked out of the room and I fell asleep.
I was awoken the next morning by the sound of my Mum packing. “Morning.” I said sleepily.
“Morning honey, I’ve got good news, we’re going back home. Dad’s already gone and taken your chair and our stuff, he’ll meet us at the hospital”
“I know,” I replied, “Alex told me last night, is there any breakfast, I’m starving?”
“Yes, over here.” Mum walked over to the table, picked up a bowl, sat in the chair next to the bed and sat my bed up. As she did the sheet dropped to my waist and she could see I was naked.
“Oh.” She said. “You were dressed last night when I left.”
“I know, “ I replied, “ I asked the nurse to undress me in the night as I was uncomfortable and really hot, apparently people with no limbs sweat more as we’ve got less body surface area or something.”
“That’s right,” Alex Peters appeared at the door, “How’s my favourite patient doing this morning?”
“I’m fine thanks,” I replied, it didn’t bother me that I was sitting there with nothing covering my top and he could see my boobs. Mum seemed to forget too and carried on feeding me so I didn’t say anything.
“Right,” continued Alex. “Here’s all your wound care information, and information on how to sit and lay and things ok?” He put a load of papers on my suitcase. “Also here are your follow up appointments, I want to see you a few times here in clinic before I discharge you completely to the care of your local hospital ok?”
“Yeap, ok.” I replied “Good, right I’m off to clinic, I’ll be back before you go though.”
Alex left, Mum finished feeding me and put the breakfast stuff away and then Alice came in.
“Morning Miss Bindon how are you today, looking forward to a nice journey?”
Good, before you go I’m going to take those dressings off, you don’t need them anymore. Have you seen your scars yet?”
“Only one of my arms, erm shoulders.” I corrected myself.
“Ok.” Alice removed the pads from both my shoulders and inspected the scars.
“They’ve healed nicely,” She commented, “The surgeon did a good job.” Then she laid me flat and removed the pads from my hips.
“Again. Healed nicely, another good job.”
“Can I see?” I asked.
“Certainly you can darling, I’ll be right back.”
Alice left and reappeared a moment later with a small mirror like the one hairdressers use to show you the back of your hair. She sat me up a bit, and held the mirror so I could see. The scars were a red line along each side, the skin was puckered on each side and kind of folded in on itself at the join, the back where my buttocks joined was slightly lower than the front, I guess that’s the shape of my pelvis. I could now see that my vagina lips did protrude a bit, past the bit I sat on, I could see the problem. It was weird, I’d never seen my vagina, only felt it (that was something I’d never get to do again!) and now I was seeing it a way that not many teenage girls get too. Alice took the mirror away and went of to do some things. Mum then grabbed a towel, wrapped me in it, picked me up and carried me to the bathroom, she laid me down on the floor and ran the bath. Once it was deep enough she unwrapped me from the towel, picked me up and put me in the bath.
“Is it ok, it’s not too hot is it?” Mum asked.
“No it’s fine, its lovely, thank you.”
Mum let me soak for ages before starting to wash me, this time I felt less odd when she washed my boobs and between my hips. After, she pulled the plug, picked me up, put me on the towel, dried me and wrapped me in it and then she carried me back to my room. Then she asked me what I wanted to wear for the journey. I told her just a vest top and no bra and my knickers and shorts. Mum dressed me in what I asked for, put my hair in a pony tail and packed the last of my things. As she finished the 2 ambulance guys turned up with their stretcher, followed by Dr Alex Peters, Alice and all the other nurses. Alex came over, picked me up, cuddled me, gave me a kiss and wished me well, he then put me sitting up on the ambulance stretcher. I asked the ambulance guy to put the back up, I hadn’t got the hang of sitting up unaided. Then Alice came over, gave me a kiss and cuddle, then the other nurses said their goodbyes. The ambulance crew put all my bags on the stretcher where my legs should have been so my Mum could say goodbye and thank you to everyone and then she carried all my flowers out to the ambulance as the crew wheeled the stretcher, I asked the guy to lay it back a bit, I didn’t want to get turned on now, Id never have survived a 21⁄2 hour journey feeling like that!!! Alex Peters and Alice came down with us and as the ambulance left they waived goodbye and I started to cry again.
I soon discovered that it was bloody hard to sit on a stretcher when you’ve got no arms and legs while an ambulance is moving, you’ve got nothing to stop you rolling around when you go round corners, and as I was top heavy now, more than a few times the ambulance man had to hold me onto the bed. I soon fell asleep though and the ambulance man laid me almost flat on the bed.
I woke up as we went over a bump into the hospital near home. As the ambulance doors opened some of my family and friends were there with banners, balloons and party poppers to greet me. We stayed with them for about 15 minutes and then the ambulance crew took me on the stretcher up to children’s ward. When we got there a lady introduced herself as Julia and told us he was the Senior Staff Nurse. She showed us to my bed and told us the Dr would be round later. Dad picked me up and put me onto the bed, Mum helped the ambulance crew unload everything of the stretcher then they left.
We thanked them both. Mum, Dad and I chatted for a bit until the Dr arrived. He introduced himself as Dr Atkinson, he seemed nice, he told me he wanted to examine me so Dad laid me flat on the bed. Dr Atkinson removed my shorts then had a good look and feel of my hips and shoulders then said he was very pleased with my progress. He then put my shorts back on me and sat me up then sat down on the bed and chatted about what they were going to do while I was there. Firstly the Physio’s were going to assess me and teach me how to move and sit and give me some exercises to do, then the Occupational Therapists were going to teach me how to use an electric wheelchair controlled by my mouth with a joystick and any other aids they thought I could use. They’d already been to my home and recommended what changes needed to be made there. The Dr then said he should have me home within 2 weeks. I was so happy to hear that. Dr Atkinson then said we’d start tomorrow but that I could rest for today. He then got up and left.
We spent the rest of the afternoon chatting and watching telly. A few of my friends came by, Mum and Dad left so I could chat with them. It was really nice seeing them again. They told me all the gossip from school. Danny, my sort of boyfriend, asked what it was like having no arms and legs. I didn’t really know what to say, just said that everytime I tried to move it felt like they were stuck. Then my friend Beth asked if they could see. I agreed so Beth laid me back and pulled back the sheet and the 5 of them just looked for a while.
“Beth, you can take my shorts of and see my hips if you want too.” I told her.
“Are you sure you don’t mind Jess?” Beth asked.
“Not at all.”
So Beth pulled down my shorts and they all had a look, Danny said it was weird but looked kinda cool. I liked that he thought that, I could feel myself getting hot again. Beth put my shorts back on and sat me up. We all sat and chatted for a bit, the boys went leaving me with the 3 girls. We had a real girly chat, it was great. When it was time to go Beth promised to come back tomorrow. We said our goodbyes and they went as Mum and Dad got back. Later the nurse brought my dinner in and Dad fed me, we watched some more telly, Mum then took me to the toilet, washed me and got me ready for bed and I fell asleep.
I woke up early in the morning busting for a wee, it was only just light. I called out but no-one came, so I called again still no-one came. I waited a bit, called again but again no-one came, I ended up wetting myself. A few hours later a nurse finally came in and found me in tears I told her what happened, she just tutted took my knickers and shorts off and put a pad on me and then changed the sheets and went off. A bit later the lady brought round the breakfast and put it on the table. She smiled and said the nurse should be in soon. I waited about 1⁄2 hour before calling out, I kept calling for about 10 minutes before the same nurse came in and asked very brusquely what my problem was, I told her I needed feeding. She told me she knew that but that she was busy and would get to me when she could. Then she stormed off. It was about 9 o’clock when my Mum turned up, she found me in a real state. I was crying again. I told her about wetting myself, then not being fed and how the nurse was rude to me. Mum dried my eyes, washed my face, changed me properly, and then fed me. She then told me she’d be right back. I could hear her shouting and the nurse, Mum was saying how disgusted she was with that she could treat her disabled 13 year old daughter like this. Mum demanded to speak to manager as soon as one came in.
About 10.30 Julia the Senior Staff Nurse and a man dressed in a suit came in, he introduced himself as the Director of Paediatric Services. The 2 of them wrote down our complaint about the nurse, afterwards Julia told us how sorry she was and that she guaranteed that nothing like that would ever happen again, she then gave Mum her mobile number and told her to phone anytime if she had any problems. The man then stood up apologised aswell and they left. About 1⁄2 hour later the man came back and told us the nurse had been suspended as this wasn’t the first complaint about her attitude.