The Wheelchair Zone

Part One

Rob woke up.

He was still in room 25 of the Golden Raja hotel Mumbai. His head pounded and his stomach turned at the stench of urine and worse. Where was the doctor? He tried to move and as he realised he couldn’t, he fell into unconsciousness again.

It had been five days since he met Dr Jalfrezzi in person and two years since he first contacted him over the internet. He was so excited that he had finally found a doctor who would give him what he truly believed he desired.

He had booked into the Golden Raja hotel as it seemed to be the only hotel in all of Mumbai which advertised itself as wheelchair accessible. The plan was that he would arrive and leave as a paraplegic and only he and the good doctor would know that he would arrive as a pretender and leave as real paraplegic. On his return home the doctor would provide medical records documenting his sudden paralysis due to a viral infection of the spinal cord. The hotel turned out to be up to a pretty good standard of accessibility even by western standards.

Oh God what time was it? What day? Rob could see the clock it said 5.14 it was light but the blinds were closed. Where was Jalfrezzi, he was supposed to come back twice a day for a week. The smell and the flies were overpowering. He felt his groin and the bed and they were wet despite the fact he could feel the catheter tube exiting and disappearing over the edge of the bed with is fingers. He tried to roll over and look and could just glimpse the engorged bag on the floor looking as if it would explode. Jalfrezzi was supposed to empty it every visit how long had it been? The catheter was bypassing he was lying in his own urine. He needed a drink.

The procedure was simple. The doctor would inject 25 ml of medical alcohol with the addition of a local anaesthetic into the spinal canal at the space between T11 and T12. The effect would be almost instant and the result would be complete paraplegia at t12.

The thirst was unbearable. Rod began to fear he would die. The bathroom was only 10 feet away; his wheelchair was by the bed. I can do this he thought, I have been practicing for years.  Why am I stuck to the bed? Is this some kind of joke? After what seemed an age he managed to get up on his elbows but as soon as his head got above his heart he passed out again.

£20,000 was not cheap but how do you price a dream. He had felt that he was meant to be a paraplegic for as long as he could remember. He had hidden it for so long too ashamed to even tell his closest friends or to seek help.

After several attempts Rob had gotten to the edge of the bed and had realised the he wasn’t stuck to the bed but he wasn’t strong enough to lift his paralysed body clear of the bedding. Reaching out he gripped the frame of his wheelchair and pulled it closer to the bed. Struggling to semi sitting position and fighting off the nausea and faintness he let go of the bed to reach over the chair. He briefly sensed the room spinning past as he crashed uncontrollably sideways, hitting his head on the wheel of the chair as he crashed to the floor.

The very first word he typed into the crude search engine when he first got his AOL service was PARAPLEGIA. Amongst all the medical and personal sites to his mixed astonishment and relief was one site that talked about wanting to be paraplegic.

He had no idea where his legs were but his head was under the wheelchair with his face in a pool of what had to be urine. He was so thirsty. He cried as he lapped it up like a dog.

The relief of discovering he was not a lone madman but one of many who had this knowledge that they were not as they were meant to be was overwhelming. He had always believed he was mentally ill in his feelings that he was meant to be paralysed.

MISTER ROB! MISTER ROB! He awoke to see Mohammed the young son of the owner looking over him. Soon the room was full of people and commotion and he slipped into a faint again.

When he woke again he was still confused, he was in a world of whiteness and was staring at what seemed to be a floor. He could just see a urine bag hanging on a frame by the bed the urine was a very strange colour almost black! “Well hi there honey” a sweet voice, in English and with a gentle Australian accent. He tried to turn and see the speaker but found he couldn’t he was held  in some kind of restraint he thought, then the voice said “Ok  you might want to shut your eyes this can be a bit strange the first time” Suddenly the world span on its axis, floor- wall and legs (nice legs) – ceiling.

“Hello!” The face was as sweet as the voice. “Do you know where you are?” Hospital, muttered Rob. “Good guess” the nurse smiled. You’re in the American hospital. Don’t panic but you’re in a Stryker frame, a revolving bed. Amongst other things you had some very bad pressure sores when you came in; we need to turn you regularly. You’re in a pretty bad state and still very sick but the doctor will explain all that. Just try and get some sleep for now.

“Robert?” …  “Robert?” The woman’s voice again rousing hike from his sleep. He opened his eyes and saw two men a European middle aged man and what he presumed was a local man. Robert, said the white man. I am doctor Johnston and this is Inspector Khari.  Robs heart sank. Here we go they know all about it and I will be in jail or a mental hospital before I know it.

Rob… listen carefully.  I am afraid you appear to have been the victim of a terrible crime. You were found in hotel room two weeks ago and you had been subject to some crude medical procedures. I am afraid this is very bad news.

“Oh it’s not so bad as all that Rob thought to himself”

He could not have known just how very, very wrong he was.

Part Two – We have good news and bad news!

“May I sit down Robert”? Without waiting for an answer Doctor Johnston sat on his bed.  Rob felt a frisson of excitement as he realised that he had seen the doctor sit on the bed but had not felt it.

“How much do you remember”? Not much answered Rob, thinking that he would wait and see just how much they had worked out. “Ok, we will tell you what we know and you can fill in what you remember” OK.

You arrived in Mumbai about a month ago? You booked into the Golden Raja, although because of your handicap you had little choice? The word handicapped made Rob cringe a little. He could imagine some of his disabled activist friends with steam coming out of their ears. However what surprised him was that they had not questioned at all the fact that he was disabled when he arrived.

We know you befriended the owner’s son Mohammed, who by the way, has been here every day since you were brought in and is waiting now to see you! You have him to thank for getting you the help you needed.

You made all the usual tourist trips. We have questioned the taxi drivers. And, about three days before you were found you told the hotel you were going to visit the northern temples and would be away at least overnight? Yes that’s what I remember. In truth this was the plan to ensure that they would not be disturbed after the treatment.

The next thing we know for sure was that young Mohammed found you in a very bad state having been the victim of a terrible crime. Rob was wondering what this crime was they were talking about.

Robert, listen carefully. You appear to have been the victim of organ theft. This stunned him. Organ theft Rob asked. Yes you need to listen carefully. When found, you had a large surgical wound on your lower back, not an amateur job but reasonably competent. We now know your right kidney has been removed. The fact that you are alive is, frankly a miracle. The Inspector here tells me you are the first known survivor. They usually take both kidneys you are lucky.

The bastard! The thieving greedy bastard thought Rob.

Now you probably know that we need only one kidney to survive but we have some concerns for you. Because of the lack of care in the three days you were alone, your remaining kidney was badly damaged by the back pressure from not having your catheter managed properly.

As well as the surgery, you were given what seems to be a spinal anaesthetic and we are worried about the effect of this on your paralysis. What effect? Rob asked with a rising feeling of panic. He tried to wipe the tears he felt beginning to flow but his arms were still inexplicably restrained.

Robert do you know what your level of paralysis was before this happened? Rob thought for a moment whether to tell the truth but decided to stick with his stock story. I was a t12 paraplegic from Transverse Myelitis about three years ago.

Robert I am very sorry but you are now quadriplegic at about C6. Do you understand what I mean? Yes, he was sobbing now, this wasn’t the plan. I must be honest with you, we think the injection introduced an infection into your spinal fluid and your level of paralysis has been rising since you were brought here. It has been stable at C6 for the last day or so but we don’t know for sure whether it will get better or worse. This has been a lot to take in I am sure so I will leave you now to rest.

Rob? Rob? He awoke to feel a hand gently stroking his face. It was the angel of mercy again. Hi he muttered. I need to sort you out a bit before your little friend Mohammed visits so please excuse me. With the help of an Indian nurse she took the bedding from him and rolled him gently onto his right side. Unfelt by Rob she placed a paper sheet under his buttocks and inserted a glycerine suppository into his rectum. What are you doing? He asked. Just making sure you get well she answered. You know we haven’t been introduced, you know I am called Rob but I don’t know your name? Do you promise not to laugh, she said in her Australian accent? Why would I laugh?

It’s Sheila! An Australian nurse called Sheila! Rob laughed, at least he wanted to laugh but what came out was a stifled feeble snort. Then he heard and smelled the result of the suppository and realised what she had been doing for him. It wasn’t over, she inserted her gloved finger into his rectum as she had done every day since he was in her care and cleared out any faeces still remaining. He couldn’t feel any of it but he knew what was happening now.

This wasn’t in the plan, he kept thinking, this wasn’t in the plan, he was going to be an independent paraplegic he would manage his own care. This wasn’t in the plan. His arms weren’t restrained they were paralysed. This wasn’t in the plan.

Sheila returned with a bowl of warm water and began to wash him; she cleaned his feet and legs, his groin and bottom, his arms and hands. Only when she took a clean cloth to his shoulders and face did he feel the warm water. She lathered his face and shaved him with surprising skill and gentleness. She gently took his legs and hands through range of motion exercises. This was something she had done every day since he arrived; she even came in when not on shift to do it. Rob watched in horror and fascination as she held and moved his limbs, it was as if they were a stranger’s limbs. He closed his eyes and they simply disappeared. He didn’t know or feel it but she gently bandaged some padded splints to his feet and hands to prevent contractions and further pressure sores. Then she turned him onto his other side and supported him with pillows.

How about some solid food Rob? The question suddenly made him realise he was hungry. How…..? We have been tube feeding you since you came in but the Doc reckons you could try some scrambled eggs? Ok. She left saying she’d be right back.

He must have dropped off because she woke him with the same gentle stroking of his face.  He lay on his side while she fed him from a plate of eggs and little fingers of toast. Suddenly, he began to feel faint and he could see she was concerned. Rob, try and cough! He tried but the result was a feeble sniffle. Some food had obviously gone down the wrong way, he was choking but without the gag reflex. The darkness closed in on him and the commotion of the crash alarm and Sheila’s voice faded into the blackness.

Part Three – Out of the frying pan!

He awoke to the regular click…hiss of a ventilator. He felt as if he was floating. In a sense he was as he was on a special air mattress but the real reason for the sensation was that he could feel nothing except his face.

Rob would later know that he had died twice and had been unconscious for two weeks. In those weeks Sheila continued to care for him above and beyond her duties. The bowel program, the range of motion, the two hourly turns and the care of the tracheal stoma to which the ventilator was attached.

The angel came to him. “Bloody hell Rob you going to keep scaring me like that”? He tried to talk but no air passed over his vocal cords, he felt rising panic. Had he really fucked up and ended up a total vent dependant quad?

Ok two weeks ago you choked on some scrambled egg! You couldn’t clear it as your level of paralysis had risen to C4. You got pneumonia and had to be ventilated. But listen to me, we are pretty sure the inflammation caused by the spinal infection is reducing, at present you are paralysed to C2 but some of that is drug induced because you were fighting the vent which is a good thing. You have a visitor who really needs to see you she smiled.

A small figure in a huge heavy hospital style wheel chair and wearing steel and leather leg braces on stick thin legs came into his view. It was Mohammed the hotel owner’s son. When Rob had first met Mohammed he realised why the Golden Raja Hotel was unexpectedly so accessible. Mohammed was paraplegic; he had been run over by a motorcycle rickshaw when he was barely 4 years old, he was now 13. His parent’s family had little money and he received the immediate care he needed but not much more was available in Mumbai. Mohammed had taken to this confident older paraplegic and had pretty much shadowed him while he was at the hotel. His English was pretty good, he was always on the internet chatting to others with SCI he was a bright likeable kid. Mo was crying, “Mister Rob I thought you would die”. “It’s OK Mohammed” Sheila knelt by him and took him gently in her arms. “I think our friend Rob here is going to get better”.

Every day while Rob was on the vent at the hospital Mo came an read to him in his rather endearing English. Rob wouldn’t have chosen Harry Potter of course but Mo did!

About three weeks later Sheila came in one afternoon and it was clear that she had been crying. “Rob I have to go home to Australia my dad has had massive stroke”. She kissed him and that was the last he saw of her for a very long time.

That was the point when things changed for him. Friendly doctor Johnston arrived the very next day but wasn’t so friendly. “Well, what are we to do with you Rob, you have no insurance and we can’t keep you here for ever. Your embassy isn’t keen on repatriating you because you are penniless and they aren’t even convinced you are who you say you are.” Rob was shocked at the change of tone. “Now that Princess Sheila has gone to daddy she can’t interfere” he wondered what he meant by that, his tone was spiteful.

We are going to try and wean you off the vent as nobody is going to take you off our hands with a vent. We will withdraw the paralytic drugs you are on and we’ll see how much lung effort you can muster. Over the next few days they slowly reduced the curare based drug he was on and he began to breath under his own power at least to some degree. He found he wasn’t breathing automatically like he used to but that each breath had to be consciously taken. At night he still needed the vent. He wasn’t getting anything like the care input he had gotten from Sheila, his hands were already staring to form into fists and his feet were pulling down into the point position. He didn’t know but he skin on his heels and at the base of his spine was starting to break down. He dreamed about her every night, he wondered if he would ever see her again.

About three weeks after she had gone home Johnston came to see him. I have found a place for you Rob. It’s a charity nursing home, not as nice as here but clean. He smiled a sneering smile “Well clean-ish”.  I will phone the good Doctor Jalfrezzi today. He’s the director, a very charitable man.

The next day Mohammed arrived to find his friend gone and nobody willing to say where or how. Something wasn’t right here he had only one choice he had to help his friend and he knew how he would do it.

That night when his parents though he was doing his homework he was emailing Australia to Miss Sheila. She would help him.