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Chapter 10
Barbara felt something soft against her face. She seemed to remember very little of the last few days, but there it was again. It was ticklish. Soft and ticklish.
She opened her eyes but everything was blurry so she blinked repeatedly. Where was she and what was going on?
“Babs, honey. Can you hear me? Shit where’s the button for the nurse. Hurry up, dammit. Babs, can you speak?”
“Jake,” her voice was barely audible and breathy. She could hear strange sounds all around.
“I’m here, so’s Ryley. My Mom brought him in to see you. We were hoping you were going to wake up soon.”
“Ryley?” she remembered her son’s name. Everything was so fuzzy.
“You do remember?” Jake wondered if they had been wrong and she was brain damaged for a moment.
“Yes, can I …” she was about to say hold him, but her breath was stolen and nothing came out. She panicked and tried to move, but realised for the first time that something was wrong. She couldn’t move. “Jake, what’s…”
“Babs, honey. Try to relax. Everything is fine. You were really sick again, baby. After the birth, you started having breathing issues and they had to do surgery. The doctor will explain, but right now you are on a ventilator to help you breathe.”
Jake held the two-week-old baby so she could see him. He was wrapped in a little blanket and had a tuft of blonde hair at the front. He laid the baby next to her face and she could feel the tuft of hair against her cheek. Soft and ticklish. That’s what she had felt earlier when she woke up.

Babs waited patiently in the MRI machine as it whirred around her, wondering what the results would show. So far the results had been good as far as the viral infection was concerned. No signs of recurrence. The rest of the news wasn’t so good. They had found extensive evidence of the infection right the way up her thoracic spine as far T1 and then less severe but still inflamed spinal cord even higher. The surgeons had a long discussion while she was on the table and couldn’t decide so one of them had gone out to Jake as he sat in the waiting room.
Jake didn’t take much time making his decision. “Cut the damn thing out completely, I can’t take this happening again.”

The doctor went back in and told the neurosurgeon what he had said.

They cut out the cord at C4 to be sure they got everything.

Barbara was still on a vent for the time being, which she hated. They hoped to wean her off eventually but nothing was certain and she might be on it for good. Apart from that, there seemed little they could do for her. She was paralysed from her shoulders down, not even able to shrug them. She could move her head freely, but that was it. There was very little of her spinal cord remaining. At the end of the week she was going back to Craig for a month so they could teach her how to control her wheelchair and use technology to do things. That was about as far as she was going to get it seemed.

Barbara felt light headed. Her aide was raising her wheelchair to a more comfortable angle so she could see her visitors. Jake was bringing Ryley to see her today. She had missed them hugely. She glanced at her appearance in the bathroom mirror. It wasn’t too bad except for the trache tube in her neck. She hoped it wouldn’t scare her little boy.

She turned her head to the side and shifted the position a little. The aide placed a straw at her lips for a drink, then replaced it with the control straw for her wheelchair. Barbara took it between her lips and turned the chair to go into the room she had occupied for the last two weeks.
She was out of intensive care and had been moved to the rehab center where they had so far taught her how to control her chair and a computer. Most of the time she was just practising those two things, the rest of the time she had PT. There wasn’t a whole lot else for her to do alone. Everything seemed to be largely about how to tell other people what she needed them to do. It was kind of frustrating, but at the same time, she was glad she was still alive. She just desperately wanted off the vent and to go home to her family.
Jake arrived and Ryley could be heard before they even got to the room. He was crying like all infants do from time to time, having been woken from his sleep in the taxi to the rehab center. Jake shushed him outside and then stepped into Barbara’s room. He was expecting her to look a little different, but was a bit shocked by her appearance.
His wife was as much laid as sat in the large powerchair. Pretty much all her body had to be supported in some way. Her feet were in huge padded splints, her hips and chest strapped in, pads below her armpits to prevent her body moving sideways. Each arm was carefully stretched out on padded rests, her fingers included. Even her head and neck were supported by pads. The tube connected to the vent was still in place as well. Worse than all this was the way her body had just melted away in the few short weeks she had been gone. Her shoulders were exposed as she wore a simple sleeveless top, leaving the narrow, bony upper body on show. Similarly she had loose fitting shorts on and this left her already slender legs looking like sticks. He could imagine that the rest of her body had gone a similar way, except for her stomach. She had already had the start of a belly from the first bout of paralysis, but it was now evident that this was more obvious without any other muscle to disguise it. She looked very severely disabled.
But her face was as beautiful as ever and as their eyes met, there were tears in both pairs.

Jake went to her and placed the baby on her chest. He quieted instantly, almost as if he knew he was in the right place. Barbara looked at him, but it was hard for her to move her head to see him. Her neck was weak and the vent tube obscured him slightly. Jake stroked the side of her face and kissed her on the lips, not a quick peck, rather a soft and slow kiss full of love. He held the baby in place and then after they broke, he had the nurse remove the strap holding down her wrist and they placed Ryley on a pillow with her arms wrapped around him. Barbara couldn’t feel the little boy but she could see him and the pride shone from her eyes.

Six weeks after leaving for Craig, Barbara returned home, only it was a very different arrangement in place for her now. There was a nurse or aide on duty 24 hours a day with a room for them to use when she was sleeping. The vent was still on at night, but during the day Barbara was able to breathe unaided. Unfortunately, the trache was a permanent fixture in her throat for the time being. Her body had atrophied further and the once toned and slender body was now flaccid and skinny. She was able to sit for long periods in her powerchair and control it with the sip and puff straw at her lips. They also had found a drink container with a long flexible hose she could sip water from throughout the day and this meant that she could at least move and keep hydrated without help. That was where things ended though. They had a nanny for the baby because she couldn’t change her own diapers or feed herself let alone someone else. She was arguably more dependent than Ryley. She couldn’t scratch an itch, blow her nose or change position without assistance.
If it seemed hard at first, over time she became used to this new life. As Ryley grew older and more independent, Barbara also found a path for herself. She could no longer act, but she discovered she could still write, email and organise and so she began using her computer to write screenplays and through her agent and other contacts found she was pretty good at it. She regularly wrote episodes of a popular hospital drama series and had a movie of the week accepted by another studio. Her big idea though was to write a screenplay about her own life and started to put it together. It took her two years to finish but when she had, reading through the final draft, she emailed it to her agent for pitching to some of the major studios. There was interest from a TV company about making it, but eventually she had interest from a small production company who wanted to make it into a feature film.

Barbara was stunned when the producer wanted to meet her in person.