New story! "Every Breath I Take"

This story was emailed to me by Cathy, who has been following my blog for a while.  She wanted to know what I thought about it. I liked it, I think Josh is an interesting character, and asked if I could publish it. She gave me a "thumbs up" as she is eager to find out what people think about her story.  That said; she hasn't promised me she'll write further chapters, but I think that some positive feedback might do the trick. ;-)

The premise of the story is: Josh was born with a (fictional) lung condition that means his lungs have been slowly deteriorating his whole life. Apart from his lung condition and being partially ventilator dependent there's nothing wrong with him. He is fully mobile, but because of his lung condition uses an electric wheelchair to get around when he has to cover longer distances.


This is the first time I publish something from a guest author on my blog. I hope you like it - and that together we can persuade Cathy to continue her story. :-)

For the record: Josh's condition is fictional, a figment of Cathy's imagination.  It was inspired by the girl in this video: https://www.youtube.com/watch?v=RsPZhYfyNkc  Cathy told me that she has tried to research what her disease is without success, so she decided to take her own spin on it. I take no responsibility for medical accuracy in the story.

At the age of 25 Josh Langdon felt he had done pretty well, despite the limitations his health issues gave him. When he’d graduated high school eight years earlier he’d been on the honor roll.  He’d graduated college on time with more than decent grades and he had a full time job that allowed him to work from home.

Josh was born with a lung condition that meant his lungs had been deteriorating slowly his entire life.  He’d been diagnosed when he was just three weeks old, but during his childhood it hadn’t affected his life much; he’d been a bit short of breath when he pushed himself physically.  He had always been picked last in gym class.  

He had been about 15 years old the first time he’d started feeling seriously bothered by his condition and things had gone downhill pretty fast. When he was 18 years old he’d been fitted with a permanent tracheostomy tube in his throat and since then he’d been partially ventilator dependent; he needed a ventilator to help him breathe at night.  During the day Josh still managed to breathe on his own, but he had very low lung capacity and virtually no endurance. When he needed to cover longer distances he used a power wheelchair.

Lately Josh felt that his lungs had deteriorated further, he was short of breath most of the time during the day, even when he was sitting still at his desk typing, and he recognized several symptoms that his brain wasn’t getting enough oxygen. As much as he hated the idea of being on a ventilator 24/7 he had been aware that it would become a reality at some point when he’d started using one at night.  Now he was sitting in his doctor’s office; waiting for the verdict.

“You need use your ventilator more, Josh. It’s not sufficient to just use it at night anymore. Your oxygen levels are dangerously low and you’re really struggling to breathe, just from walking from the waiting room and in here you became very short of breath.  Your lungs have definitely taken a turn for the worse.”

“I was afraid of that,” Josh said dejectedly.

“We’ve known this was inevitable and at some point you’ll be dependent on a ventilator 24/7.  For now I think it’s sufficient that you’re hooked up to a ventilator when you’re at home.  You have a mobile ventilator, right?”

“I’ve had one since I started depending on a ventilator to help me breathe at night, both as a backup if something happens to my regular vent and to use when I travel. It’s in a wheelie bag and can either be hooked up to an outlet or run on batteries.”

“Use that around the house during the day, just keep the batteries charged and you can move it around with you. When you’re in bed at night you’ll still use your regular ventilator of course. I know you’ll get used to it pretty fast and when you start feeling better it’ll be worth it.  You’re lucky, Josh. Apart from your lung condition you’re physically in pretty good shape and since you’re able to do your own tracheostomy care you can live independently. Most of my ventilator dependent patients depend on at least part time nursing care.”

“I hope you’re right about getting used to it,” Josh sighed. “And really I don’t feel very lucky, but I guess you have a point.”

He knew that most of his friends and family were aware of his condition; the outer cannula and neck plate of his tracheostomy tube couldn’t really be disguised, unless he wore scarves or turtleneck sweaters and neither of those were garments he liked. Over the past seven years he’d learned that honesty was the best policy and he tried to anticipate questions and have answers ready.

He wasn’t really comfortable with the thought of people seeing him hooked up to his ventilator – up until now that had been something private, reserved for the bedroom where he was always alone. Where he figured he’d always be alone.

He had given up the thought of being in a relationship the day he’d been admitted to the hospital to have his tracheostomy surgery.  Finding a girl that could deal with a partner that needed a ventilator to breathe at night a thought he’d dismissed almost immediately.

# - # - #

Three weeks after Josh’s visit to his doctor he was sitting by the desk in his home office, working on a new project his boss had assigned to him the previous day. His mobile ventilator was humming next to him, pushing air and oxygen into his lungs at a regular rhythm. 

It had taken some getting used to being on the ventilator during the day, when he was awake, but he couldn’t deny the fact that he was feeling much better than before. The headaches were mostly gone and he was able to focus again. He also felt more energized than he had in a long time and he liked being able to move around his house without feeling short of breath after a few steps. 

His boss had commented on how his work had improved lately; apparently he had completed assignments faster and more accurately. The project he was working on now was a vote of confidence and Josh was determined not to let his boss down.

Josh was nervous about that evening; his buddy Andrew was coming over to watch a football game and he intended to remain hooked up to his ventilator while his friend was there.  He’d told his friends about his new regime in an email right after his doctor’s appointment, but this would be the first time one of his buddies would see him with the ventilator tubes hooked up to his tracheostomy tube.  He wondered how Andrew would react and hooped he didn’t freak out.

# - # - #

“Whoa! That’s quite some gear,” Andrew exclaimed when Josh opened the front door and greeted him. Josh was dressed in a pair of worn jeans and a plain navy blue V-necked t-shirt and he was well aware that the bright blue ventilator tubes that extended from the tracheostomy tube in his throat and down to the black wheelie bag next to him couldn’t be disguised.

“I know it’s freaky. If it’s too weird I’ll cap my trach and leave the vent in the bedroom. I can manage a few hours without it.”

“Don’t be stupid, it’s just the first time I’ve seen you with those tubes coming from your throat. I know you need it and you’ll probably be miserable without it.” Andrew slapped his shoulder reassuringly. “You have some beers in the fridge?”

“We’re watching football tonight, what do you think?”

“Knew I could trust you, dude,” Andrew chuckled. Just like that things seemed like they were back to normal between them and Josh felt part of the weight lift from his shoulders.

Andrew walked into Josh’s kitchen and grabbed a couple of Budweiser bottles from the fridge while Josh got a bag of chips out of the pantry and poured the contents into a bowl. 

A few minutes later Josh had placed the bowl of chips on the coffee table and then he plugged his mobile ventilator unit into an outlet next to the couch before he sat down and let himself sink back into the soft cushions.  Andrew sat down next to him.

“So, how’s it like to be hooked up to that thing?” he asked casually as he flipped the tops off the two beer bottles and handed one to Josh. The game was a few minutes away from starting.

“At first I thought it sucked to be using it during the day, when I’m awake, but I’ve adjusted to it and it’s actually a good thing. I feel so much better now than I did a month ago; my headaches are gone and I generally feel more energized because I’m getting enough oxygen.  I hate that there’s no hiding the tubes, but it is what it is. I need the help to breathe, there’s no denying that.”

“Could you get a lung transplant?”

“I doubt it would do me much good. They’ve done a couple of transplants on people with my condition, but they haven’t been successful. In both cases the patients started developing symptoms again after a few months and both of them are back on ventilators now. And the immunosuppressant medication they have to be on adds a whole new layer of complications. I don’t want to risk that.”

“But what if it was successful?”

“At this point it’s wishful thinking. I don’t want to risk adding more complications to my health than I’m already dealing with. I’m not willing to go on a wild goose chase for a cure that doesn’t exist at the moment. Do I like being dependent on this thing to breathe? No, I don’t. But it’s not all that bad. I can still hang out with you and watch football and have a few beers, right? I can still do my job. I can still go out and have dinner or go see a movie or a to a concert. If I want to I can leave this thing at home when I go out because I’m able to breathe unassisted for a few hours.”

“When you put it that way I totally get it. And just for the record; bring your ventilator when you come over to my place to watch next week’s game. I know you said you only have to use it at home, but I can see you’re so much more comfortable now than you were the last time we watched a game together.”

A smile spread across Josh’s face. “Thanks, Andrew. Your acceptance means a lot to me.” Before he could say anything else the game started and they turned their attention to the TV.

Might be continued…