"Every Breath I Take" chapter 10

Here's chapter 10 of "Every Breath I Take". Cathy hopes to have chapter 11 ready this coming weekend. 

As usual: Josh's conditon is fictional and I take no responsibility for the medical accuracy of the story. I trust Cathy has done some research to get it right.

Chapter 10

As Josh and Janine made their way through the Farmer’s Market they were too immersed in their conversation and checking out the produce to care much about the stares he was on he receiving end of. Josh was thoroughly enjoying Janine’s company and even if he couldn’t taste the samples of the produce because of his ventilator he had fun as they made their way through the booths. He left the tasting up to Janine and by the time they headed over to the carnival she had bought ingredients for a dinner they’d cook together at his house that evening.

“Wow, I had a teddy bear just like that one when I was a kid,” Janine exclaimed excitedly, pointing to a large teddy bear in one of the game booths at the carnival. “Unfortunately my dog ate it. I was devastated.”

Josh surveyed the game. It was a ball toss, which meant he had a decent shot at actually winning – as a kid he and Jeremy had spent lots of time with their dad in the back yard with a baseball and a glove. He drove his wheelchair up to the counter and stood up. The teenage boy manning the booth looked a bit stunned as Josh got his wallet out and handed him a five dollar bill. After he’d collected himself for a few seconds he put five balls down on the counter in front of Josh. “Here you go, sir. If you knock all three pyramids down you win first price.”

“Got it,” Josh replied. He grabbed the first ball, aimed at the first pyramid of tins and threw. Success. He repeated it with the second and third balls, successfully knocking down the second and third pyramid on the first attempt.

“That was awesome! Congratulations,” the teenager manning the booth said as he handed Josh one of the large teddy bears.

“Thanks,” Josh said as he accepted the teddy bear. He turned to Janine with a shy smile on his face and and handed it to her. “Here you go. Keep it away from dogs, okay?”

“Aw, Josh! That’s so sweet,” she said giddily as she accepted it. She pulled him in for a hug and then she kissed him on the lips. “Thank you.”

“Glad you like it,” Josh said as he sat back down in his wheelchair.  He looked a little embarrassed.

“Should we head back to your place?” Janine said as they started moving again. “Or do you want to stroll around some more?”

“Heading home sounds good to me,” Josh agreed.

“You sure know how to throw a ball,” Janine said as they were walking back to his house. “Do you have a secret past as a baseball pitcher or something?”

“I wish,” Josh chuckled. “My dad taught my brother and I. He’d spend hours in the yard tossing a ball around with my us. Jeremy actually played baseball in all through high school.”

“Was he any good?”

“If it wasn’t for my shitty lungs I would’ve been the better player,” Josh said confidently, a bit of sadness was evident in his tone.

# - # - #

A couple of months into Josh and Janine’s relationship they decided to go on a weekend getaway together; they had both worked a lot lately and a few days at a resort by the beach was just what both of them needed.  They had broken the barrier of spending the night together the previous weekend. Janine had been nervous about how he’d react to the colostomy and urostomy bags attached to her lower abdomen, but it hadn’t fazed him.

Josh on the other hand had been a bit worried about how she’d react to his more imposing bedside ventilator that was attached to a large oxygen bottle and a humidifier with an IV pole with a bag of sterile water standing next to it. He was also worried that she’d be freaked bout by his inability to speak since his nighttime ventilator didn’t have a speaking valve and he had his trach cuff inflated at night. Janine had brushed his worries away and curled up next to him. They both looked forward to spending a weekend together.

Josh had rented a van with a wheelchair lift so he could bring his wheelchair with him; there were paved walkways along the beach and one thing he had learned about Janine was that she liked to go for walks, preferable long ones. Josh become far less self-conscious about using his wheelchair lately. It didn’t seem to bother Janine at all and he enjoyed going on walks with her.

“I think that’s it,” Janine said as she lifted her suitcase into the back of the van. “We sure don’t travel light.”

“Traveling with someone on a ventilator means bringing lots of gear,” Josh said with a shrug. His luggage included an oxygen bottle and a portable humidifier he’d attach to his portable ventilator at night, as well as trach supplies and medications. “Ready to hit the road?”

“Ready if you are,” Janine said as she slipped into the passenger seat.

It took Josh a few minutes to get his settled and position his ventilator behind his seat. He had a smile on his face when he buckled his seatbelt and turned the key in the ignition. 

# - # - #

“It’s beautiful here,” Janine commented as they strolled along the beach after breakfast on Saturday. Josh was in his wheelchair.

“It really is,” Josh said. “It’s been far too long since I’ve spent time by the sea, I didn’t realize how much I’ve missed it.”

“You grew up in LA, right? Did you spend a lot of time on the beach?”

“Yeah, I did. We spent pretty much every weekend at the beach. My dad and brother used to surf.  Mom and I would play in the waves, build sand castles or just relax. It was good times. Family time.”

“Sounds great.”

“It was. I miss swimming,” Josh said wistfully. “But with a trache it’s not really a good idea and the ventilator definitely rules it out.”

“I bet you do. You know we have an awesome bathtub in our hotel room? Maybe we could give that a try? I know it’s not swimming, but…” Janine’s voice trailed off.

“We might make that work,” Josh said tentatively. He wasn’t sure how he felt about it. “Hey, why don’t we take a break? There’s a bench over there.”

“Sounds good to me,” Janine agreed. They made their way to the bench and Janine sat down on it.  “Ugh, this concrete is cold,” she shuddered as Josh parked his wheelchair next to her.

“Here, I’ll swap ya,” Josh said and stood up. “This seat has been pre-heated.”

Janine looked a little unsure of what to do, but she stood up and tentatively sat down in the wheelchair. Josh had definitely pre-heated it with his body heat. “The padding in the seat cushion and backrest feels a bit odd, but it’s pretty comfortable,” she commented.

She looked at Josh who was leaning back on the bench with a contented smile on his face.  All the time they’d spent outside lately meant he had worked up a decent tan and the freckles across his nose were more prominent. He’d let his hair grow out a little and it was curling at the ends and tousled by the wind; combined with a day’s growth of beard on his jaw it gave him a slightly rugged look that Janine loved.  He was wearing a pair of comfortably worn jeans and zip up fleece sweater with an unzipped windbreaker jacket over it. The fleece sweater that he’d pulled on over them disguised the ventilator tubes; he’d used two neoprene straps with Velcro hoops to attach them to his torso and keep them in place. Only the part that was attached to his tracheostomy tube and the trach vas visible until they came out below the hem of the sweater at his left hip. From behind the black bag with the ventilator attached to the wheelchair and the tubes coming out of it was clearly visible.

“It’s a special kind of gel padding that’s made to prevent pressure sores for paralyzed wheelchair users,” Josh explained.

“So why do you have that kind of cushion?”

“My first wheelchair was a much more basic model; the cushion was just a made of regular foam and the backrest didn’t provide any sort of support. My ass would get sore and my back started to ache pretty fast. When I ordred my second chair I insisted on getting something better. This is it and it’s great. The gel padding took a little getting used to.”

“It is pretty comfortable,” Janine agreed. “Definitely more comfortable than that bench. Have to admit it feels kind of weird to be sitting in a wheelchair though.”

“No shit,” Josh chuckled. “And I can relate to that it feels weird to sit in a wheelchair. Took me a while to get used to it and as you know I’m still not thrilled about it.”

“Well, should we get going?” Janine said and got to her feet. “I don’t know about you, but I’m starving and I’ve heard so many good things about Mac’s.”

“I’m hungry too,” Josh said as he settled back into the wheelchair. After he’d adjusted the ventilator tubing and made sure it was all in place he put his hand on the joystick controller. “Let’s roll.”

# - # - #

“Excuse me…” An unfamiliar baritone voice got Josh’s attention. He looked up to see an man his age, maybe a little older, looking down at him.

“Yes?” Josh replied, a little flustered. He and Janine had been deeply immersed in a conversation and not paying attention to their surroundings.

“Are these two seats taken?” He asked, gesturing to the two open lounge chairs across from where Josh and Janine were seated by a table for four in the hotel bar. “It’s pretty packed here and my wife isn’t too keen on sitting on a barstool.”

“They’re not taken.”

“Do you mind if we join you?”

“Not at all,” Janine said. From what she could tell the man and his wife were a few years older than Josh and her.

“Thanks. We’ll be right back.”

A few minutes later the man and his wife sat down in the two chairs.

“I’m Shawn Madison and this is my wife Nicole,” he said, extending his right hand to Josh. 

“Josh Langdon, this is my girlfriend Janine Page.”

“Thanks for letting us sit with you,” Nicole said as she shook hands with Josh and Janine. “My back has been acting up lately, I’m glad I didn’t have to sit on a barstool.”

“No problem,” Janine said with a smile. “I didn’t expect this place to be so packed this weekend.”

“It’s because the bar and restaurant at the hotel next door is closed today; there’s a wedding there and they’ve recommended this to their guests. It’s normally quieter.”

“I take it you’ve been here before?” Josh asked.

“It’s our favorite getaway when we get someone to look after our kids for the weekend. We’ve been coming regularly for the past couple of years; prices are reasonable, food is good and it’s less than a two-hour drive to get here. Is it your first time?”

“Yeah. It’s actually the first time we spend a weekend away together.”

Josh was a bit surprised that Shawn and Nicole didn’t seem to notice his ventilator or tracheostomy tube, and if they had noticed they were completely unfazed by it.  He realized it wasn’t very noticeable; he was wearing a white button down shirt with the top buttons undone. Just like earlier he’d used two chest straps to attach the ventilator tubes to his torso and he was wearing a navy blue V-necked sweater over the shirt and ventilator tubes. Although Josh didn’t feel the need to hide the ventilator he was glad he’d found ways to make is as un-noticeable as possible in public places to avoid glances. Only the tracheostomy tube with the gauze dressing behind it, and a few inches of the ventilator tubes resting on the Trach Aide were visible and since it was all white it blended pretty well with his shirt in the dimly lit bar. The ventilator tubes became visible again below the hem of his sweater on his left hip, but because of the angle of his chair they and the ventilator sitting on the floor next to his chair wasn’t very noticeable. The cacophony of sounds in the room; music, blender going in the bar and voices muted the hum of the ventilator.

“This is probably totally weird,” Shawn said tentatively. “I’m pretty sure I saw you two at Mac’s seafood shack at lunchtime. You were in a wheelchair though, Josh.”

“That was us. I use a wheelchair since I don’t have the endurance to walk long distances. I’m surprised you haven’t noticed that I’ve got a ventilator helping me breathe,” Josh gestured to the tracheostomy tube in his throat.

“Oh, I didn’t notice that. You’re good at disguising it.”

“Dim lighting helps,” Josh chuckled. “It throws most people that I’m ventilator dependent, but don’t have mobility issues. Well, I guess my lack of endurance counts as a mobility issue, but there’s nothing wrong with my legs. If I had perfectly working lungs I’d be walking.  Most people think either spinal cord injury or some sort of muscular dystrophy when they see someone on a ventilator in a wheelchair and assume I’m immobile.”

“So why do you need the ventilator and wheelchair? I assume you have some sort of lung condition, since you mentioned lungs? If you don’t mind me asking. Ignore me if you think it’s too personal. I’m a doctor, but my area of expertise is sports medicine. I’m not familiar with respiratory conditions, but I am a curious person.”

“Sometimes too curious for his own good,” Nicole interjected. “Please ignore him.”

“I don’t mind talking about it at all,” Josh assured them. “I have rare lung disease, I was born with it, that has caused my lungs to deteriorate pretty much all my life. Wasn’t too bad for the first 15 years or so, but then it kicked in full force when I was a sophomore in high school. Only about 200 people in the US have it, so I’m not surprised you’re not familiar with it. Not many people are, even doctors.”

“You said it didn’t really affect you until you were 15, were you symptom free ‘til then?” Shawn was unable to hide his curiosity, but Josh meant that he didn’t mind talking about it at all. He already liked Shawn and Nicole.

“Not completely, but the symptoms were pretty insignificant; I was a bit short of my breath when I strained myself physically. I was the kid everyone picked last in gym class and in high school I wasn’t able to participate at all. Not long after I graduated from high school I was admitted to the hospital with severe respiratory issues. That’s when I got my tracheostomy and when I was discharged from the hospital I started to use a ventilator at night. I’ve only been using a ventilator full-time for the past seven months or so.”

“That must have been a hard to adjust to,” Nicole said emphatically.

“I wasn’t happy about using a ventilator during the day, but after I adjusted I’ve realized it’s a good thing. I spent so much energy on breathing; I was constantly tired and had chronic headaches because my oxygen levels were too low. I was too stubborn for my own good and should’ve upped my ventilator hours sooner than I did.”

“Aren’t we all too stubborn for our own good sometimes?” Shawn shot in. “I know it’s not the same, but I finished a football game with several broken bones in my left foot when I was in college. Coach wanted to pull me, but I refused. That foot never got back to 100%, still bothers me when I’ve been on my feet for a long time.”

“It has taken some work to convince Josh to use his wheelchair more,” Janine interjected. “When I met him he was very self-conscious about it, he felt it made him seem more disabled than he really is, and in a way I suppose he’s right. But to me it was a bigger problem that he got tired from walking to the mailbox at the end of his driveway; there was no way he’d be able to go on a walk with me.”

“I just feel I look so crippled when I’m in the chair,” Josh shot in. “But I do enjoy being outside and going with Janine on walks in the park or strolling around town together and if using the wheelchair is the price I pay for it, then so be it. I’m at a point where I’ve realized that I’ve got to accept that I need aids if I want to live a normal life. My physical limitations mean there’s not way around that.”

“I think that’s a good way of thinking,” Shawn said. “There’s no shame in needing aides and it’s better to embrace those and live a full life, than to avoid them and live with the limitations that means. I mean; you wouldn’t be reluctant to use a wheelchair if you were paralyzed, right?”

“Definitely not,” Josh agreed with a chuckle. “I see your point there. You know, I’m glad you guys joined us tonight. This has been a great conversation.”

“It really has,” Shawn agreed. “Thanks for being so candid. I’ve learned a lot today. You actually have me interested in pulmonology. Maybe I could actually make a difference in people’s lives instead of helping whiny football players fix sore ankles.”

“I prefer being open and candid, my experience is that it usually is the most efficient way of getting rid of awkwardness. People become much less awkward when I’m open and honest and answer questions. It seems to put them at ease.”

“It was one of the things I liked about Josh from the start,” Janine said. “I was curious about why he needed a ventilator, but hesitant to ask questions. Josh just brushed my worry away and answered my questions. It was great.”

Conversation eventually moved on to other subjects and by the time the foursome bid each goodnight around midnight they had agreed to meet up for breakfast and go to Shawn and Nicole’s favorite restaurant about a mile up the beach from the hotel for lunch.