where wheelchair users and BIID/transabled unite!

A day in the future

Part One

Here is a time that all us transabled people wish would come about.  Unfortunately for most of us it is still a long way off but this is a scenario we can all see ourselves in (or is it just me?).

Aroha was so excited.  She had spent years on the internet sharing her experiences with people and finally this day had come.  She had spent a considerable amount of time contacting medical professionals, psychologists and therapists involved in BIID research and it was finally paying off.  A surgeon’s interest had been sparked when he had read about the amputations that took place in Scotland and he took it on himself to continue the work.  He had contacted Aroha a few months ago and had started discussing BIID and its effects with her.  It’ had taken a while to get him to pull his head around the fact that BIID sufferers come in all shapes and sizes, but finally today she was going to get surgery to transect her spinal cord.

Aroha spent a long time in therapy.  The therapists and psychiatrists all established that she suffered from BIID and that nothing short of surgery would ease her emotional pain.  Therapy was tough for Aroha.  She had to face a lot of issues and fears she had been trying to avoid, but ultimately it was worth it.  The therapists had shown their findings to the surgeon and he decided that she would be his first test subject.  Today was the day she would become a paraplegic.

The surgeon spent weeks trying to explain all the risks to Aroha.  She already knew that she would become incontinent.  She would have problems with pressure sores and circulation.  She would eventually develop problems in relation to pushing a wheelchair round every day but none of these things mattered to Aroha in the end.  She knew the risks; all that mattered was that her outer image matched her inner image of herself.

Aroha was really lucky.  She didn’t have to pay a cent of her surgery.  Since it was all research it was funded by various organisations.  The BIID portions of her record would be confidential and most health professionals would be told she was in a car accident.  Aroha hated having to lie, but she knew most health professionals wouldn’t understand that this was something she needed to do.  Some of her online friends had been committed for admitting these things to their doctors.

Aroha was taken down to the surgery.  She was placed on the operating table and she knew no more as the anaesthesiologist put her to sleep.  When she awoke she was in a hospital bed with a special mattress.  She couldn’t feel or move her legs from her hips down and she could see a yellow tube coming out from between her legs.  When she tried to sit up to feel her legs the pain in her back stopped her instantly.  She breathed a sigh of relief as she just lay there enjoying the numbness.  She felt whole for the first time in a very very long time.

It was round about then that her parents came in.  They had been told the same car accident story.  Aroha was dreading facing them; she knew what they would say before they said it.

“Well Aroha, it seems you got your wish…I hope you’ve learned from this to be careful what you wish for!”

“Daddy, I don’t regret this.  This isn’t necessarily a bad thing.  I’m finally free to live life the way I feel I’m meant to live it.  I promise I’ll keep going to therapy but please be happy for me.”

“That’s a little hard to do when my little girl is stuck in a wheelchair for good!  Do you realise how much money we spent on therapy?  We were hoping that therapy would help you put this whole thing behind you but obviously this accident has just fuelled this obsession of yours!”

“Careful Fred,” Mum said, “She’s just come out of surgery, you don’t want to tire her out.”

“Alright honey, lets go.  Just so you know Aroha, we’re making plans so you can come home with us after your rehab; we want to keep an eye on you.”

“I think that’s something we will need to discuss closer to the time Dad, See you.  I love you”

“I love you too,” he said as he kissed me.

At that point they both left the hospital room and my surgeon came in.

“I am so glad they’re gone, did you hear what they said?  There is no way I’m going to live with them!”

“Settle down please Aroha.  You have had a long day; I need you to rest and recover from the surgery.  You are still a little off from the anaesthetic.”

All Aroha could do was lay there and think about how her life was starting to fall into place.  Or at least fall into place a little better.  She had already started down this road when she started to wheel full time.  The people at her work were told that she was in a car accident that severed her cord and completed the damage that was starting to happen when she had her degenerative problem.  Finally she could be accepted for who she is without having to feel guilty because she isn’t a paraplegic.  There were still a lot of yucky things she had to face, but Aroha was on the right track.

Part Two

Aroha woke up to the sounds of the hospital ward coming to life.  Nurses were walking up and down the hallway getting the more seriously disabled patients out of bed and ready for their day of therapy.  Since Aroha was a T12 Complete paraplegic she was simply left in her room, with her breakfast and medication, to get her self up and ready for the day.  Aroha turned herself over onto her back and pulled away the various pillows that had been supporting her while she slept.  Aroha had only been in the hospital two weeks since her surgery and had to wake herself up every two hours through the night to turn her self over.  During the first week a nurse would come and help her but as time wore on Aroha was left with this responsibility.  If she didn’t turn herself over she ran the risk of getting pressure sores.  Not only that, because she was in a hospital the pressure sores would have a high chance of becoming infected.  Aroha had heard horror stories online and from the nurses and certainly didn’t want to go through with it herself.  She read about a lady online who had to lie on her stomach for an entire week after she had gotten a pressure sore on her bum.  Then she almost got a pressure sore on the front of her hip.  Then she had trouble with doing number twos after spending so long in bed.

Once Aroha was on her back she reached over to the bedside cabinet for the remote and pushed a button to raise the head of her bed into a sitting position.  She dragged the table over and pulled the lid off the tray to reveal her breakfast.  Cornflakes, fruit salad and juice.  If her mother had been here she would be having her cornflakes with super trim milk… yuck!  Aroha’s parents had visited two or three times in the last few weeks and every time there had been an uncomfortable silence.  Aroha knew her parents only wanted the best for her, but unfortunately their idea of the best didn’t include paraplegia.  Before her surgery Aroha described her parents to people online as people who were so biased against spinal cord injuries that she would never put them in a room with a newly injured patient.  As far as they were concerned a person with a spinal cord injury had no more life to look forward to.  Aroha knew if she went home with them they would try to do almost everything for her.  Their house was one level, and she knew her wheelchair would barely fit through most of the doors, but the bathroom, toilet and kitchen were all far too small for her to make any use of them.

Aroha looked down and saw she only had a few more mouthfuls of cornflakes left to go.  Aroha had always drunk the milk out of her cereal before eating it.  People thought she was weird for doing that but she always thought people were weird for eating various foods.  Haggis, need she say more?  Once her cereal was finished she gulped down the last of her juice and pushed the table away, clearing a path to the wheelchair next to the bed.  Aroha didn’t have her own wheelchair yet, it was too early for that.  The wheelchair next to her bed was a standard hospital wheelchair with plastic wheels and a high back with handles.  It was ugly and she hated it but it was only temporary.  She had a list of things she wanted her wheelchair to have and she knew she was going to give her Occupational Therapist a run for her money.

Aroha pushed another button on her bed remote and the bed height lowered to a point where she could safely transfer to her wheelchair.  She picked up a transfer board that was leaning against the cabinet and laid it on the gap going between the wheelchair and her bed, squeezing it as best she could under her bum cheek.  She pushed down on the wheelchair side of the transfer board and she easily slid down to the seat of the wheelchair.  She had to lift herself up and rearrange herself and her legs, and then pull the transfer board out from under her.  It was always a challenge trying to stop her legs from getting caught in it.

Aroha wheeled over to the draws under the window in her room and pulled out a pair of pants, socks, underwear and a t-shirt.  Aroha found she was spending more money on things like bras now that she was a paraplegic as she now felt she had a body to be proud of.  She was herself, nothing more, nothing less.  She didn’t go overboard in the clothes department.  Aroha was still the sort of girl who was reluctant to spend serious money on clothes.  She bought most of her clothes at the cheap chain stores, and only when her current clothes were almost falling off her body.  Aroha wheeled into the bathroom with her clothes in her lap and laid them on top of the cabinet next to the sink.  She grabbed the towels sitting on the sink and wheeled to the shower.  Aroha undressed carefully as she was still getting used to her new limitations, and wasn’t very good at pulling off her panties in her wheelchair.

Aroha then transferred onto the bench in the shower, lay a towel over the wheelchair and put the remaining towel in the seat before pushing it away slightly so it wouldn’t get too wet.  She pulled the curtain closed and started the flow of water.  She held the shower nozzle away from her body so she could test the temperature before starting her shower.  After she had it perfect she soaked her hair carefully in water.  She got some shampoo out of the bottle (it was a two in one shampoo and conditioner that her mother decided she was using) and rubbed it in her hair with the shower nozzle sitting carefully between her legs.  She then rinsed out all the soap in her hair, this always took a while as the hand held shower nozzles don’t have the same flow rate as normal showers, or at least the ones Aroha used never did.  It annoyed Aroha to high hell but there wasn’t anything she could do about it.  Aroha then soaked the rest of her body and rubbed some body was onto a waiting flannel.  She carefully scrubbed her body, making sure she lifted her legs into her lap so she could wash her feet properly.  She had to carefully make sure she cleaned her private parts and then rinse them off properly as she didn’t want to take any risks.  After rinsing all the soap suds off she sat there enjoying the feel of the water splattering against her stomach.  She knew she shouldn’t sit in there long as she didn’t want to get cold.

Aroha turned off the water and put the shower head back into its holder.  She pulled herself closer to the edge of the bench and opened the curtain so she could pull the wheelchair back towards herself.  She picked up the towel sitting in the seat and unfolded it to start drying the parts of her body that were no longer exposed to water.  She then transferred carefully back into the wheelchair and finished drying herself making sure she rubbed between her toes, and under the backs of her knees.  She threw the wet towel into the washing basket where she had put her nighty and dirty underwear from the night before.  She wheeled over to the toilet seat and transferred onto it so she could take care of her number ones and twos.  First she pulled the catheter out of the cabinet and emptied her bladder.  She then carefully stuck her finger up her bum to try and force her body to do number twos.  She still wasn’t very good at this and had to grip the bar next to the toilet to keep her balance.  It took her a while to get it happening properly, she knew it would come easier with practise as she got to know her body.  She always spent longer than most people trying to do this as she knew if she couldn’t she would have to try a mini suppository.

Aroha then wiped herself clean and used the towel that was on her chair to make sure she was completely dry before transferring back.  She pulled her panties up her legs and then changed her body weight so she could pull one side up her hips.  She then changed her weight again and pulled the other side up.  She kept continuing this process until her panties were sitting properly with no wrinkles where she would be sitting.  She then put her bra and socks on and started pulling her pants on.  Putting pants on was the same process as putting panties on but it was more annoying as she had more to worry about pulling up.  And then nine times out of ten the pants always looked a little twisted and she had to spend ages lifting her self and straightening them out.  She then pulled her t-shirt on and wheeled back into her room where a nurse was clearing her breakfast away.

“Good morning Aroha, I assume you took your medication?”  The nurse asked.  The staff at the hospital all knew Aroha’s circumstances and they all knew it was for important research.  Many of the staff at the hospital was uneasy about it as it conflicted with their own beliefs, but ultimately they couldn’t put Aroha’s health in danger by ignoring her new needs.

“Yes I did, and I enjoyed my breakfast thank you,” Aroha replied.  The nurse told
Aroha her physical therapist would be in soon to take her for her morning exercises and then left to clear other patients’ rooms.  Aroha used this time to brush her hair and pull it back into a loose pony tail.  Aroha never wore makeup.  She never wore makeup before her surgery either.  She wasn’t really that sort of a girl.  She wasn’t really a tomboy, or a girly girl, she was a bit of everything, or as she liked to think it “the best parts of everything”.

Aroha was so thankful she could now live day by day as the person she always felt she was meant to be.  She is no longer going through the daily emotional pain of feeling like she was getting nowhere fast.  Sure she felt guilty about still having to deceive people, but she no longer had to pretend to be someone she wasn’t.  She no longer had to try and convince people she was a happy, able bodied person.  She looked at her reflection in the mirror in her bedroom while she waited for her PT to come.  She simply sat there and admired the happy, contented girl staring back at her.  She still had challenges and hardship in her life, but she now felt better prepared to face these challenges.

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