"Every Breath I Take" chapter 5

Cathy's week is turning out to be less busy than she thought it would be and she just sent me a new chapter! I'm not complaining - and I have a feeling those of you who are reading her story agree with me. :-)  

As always: I don't take responsibility for the medical accuracy of this story.

Chapter 5

It didn’t take Josh long to find his family; his mother, father and a few other members of his family were waiting and he was soon on the receiving end of several hugs. After hugging Josh for a long time Carolyn Langdon grabbed his upper arms and held him firmly on an arms lenght as she surveyed his appearance. Her eyes were getting moist and a small smile appeared on her face.

“What, Mom?” he finally asked.

“I’m just so happy to see you and you’re looking so much better than you did the last time I laid eyes on you. You’ve gained some weight and you actually have some color in your cheeks. The last time you were here you were so skinny and pale.”

“I feel better than I have in a long time, Mom. I’ve really made an effort to eat well for a while and it has paid off. And lately I’ve had more energy and I’ve taken ‘walks’ around my neighborhood or in the park down the street from my house in my wheelchair almost daily.”

“How is your new ventilator regime working for you? I know you weren’t happy about it having to be on a ventilator during the day.”

“As much as I hate to admit it; it’s great. I don’t feel fatigued all the time, since I’m not spending so much energy on breathing. I didn’t realize how much I was struggling.”

“I’m so glad to hear that, son,” Carolyn said, pulling him in for another hug. When she let Josh go again “Oh, we’d better go find our seats, the ceremony starts in 15 minutes.”

“Is it okay if I stay for a few days, Mom?” Josh asked his mother as they made their way through the crowds toward their seats.

“Of course it is. You’re always welcome to stay as long as you want to.”

“Thanks, Mom,” he replied, as he wrapped his free arm around his mother’s shoulders and gave her a little squeeze. He noticed that people were staring at him, but he refused to let anything ruin this day.

# - # - #

When Josh arrived at his parents’ house after the graduation ceremony he was exhausted. The three and a half hour drive to get to LA followed by the ceremony without any chance to rest between had drained him.  He sat in the drivers seat for a few minutes to gather some energy before he unbuckled his seatbelt and detached the ventilator tube from his tracheostomy tube. It didn’t take him long to get the portable ventilator out of the car and re-attach the ventilator tube to his tracheostomy tube. He was just about to grab his luggage when his dad came out of the front door.

“I’ll get that for you son,” Darren said as Josh reached for the garment bag in the back seat.

“I’m perfectly capable of carrying my own luggage, Dad,” Josh said, annoyance evident in his tone.  He’d always felt that his parents were overprotective and one of the reasons he’d moved away was to get away from their coddling and live his own life.

“I’m well aware of that, Josh. But what’s the harm in accepting some assistance now and then? I know you’re tired; you look like you could fall asleep on the spot. ”

“I’m beat,” Josh admitted. “It’s been a long day already and I haven’t been able to take any breaks to rest like I normally do.” 

“Then lets get your things into the guestroom and you can lay down for a couple of hours before the guests arrive. That should recharge your batteries so you’ll have the energy to enjoy the party tonight.”  Josh didn’t have the energy to argue with his dad, so he nodded contritely and let Darren grab his luggage and carry it for him. Josh followed him into the house, pulling his ventilator behind him. 

# - # - #

“Thanks, Dad,” Josh said when his dad left his suitcase at the foot of the bed and hung the garment bag on a hook on the wall next to the closet.

“No problem, son. Anything I can get for you?”

“I’m good. Thanks. Um, the guests will be arriving around five thirty, right?”

Darren nodded. “Yes.”

“I’ll set my alarm for 4:45 then. If you haven’t seen me by five o’clock please come in and wake me up. I sometimes sleep through my alarm when I’m really tired.”

 “You’ve got it, son,” Darren said. Just as he was bout to close the door behind him he turned around. “It’s good to have you here by the way, I’ve missed you. Your mom has missed you too.”

“It’s good to be here,” Josh said with a smile. His dad smiled back at him, turned around and walked out of the room, closing the door behind him.

Although Josh was tired he found the energy to unpack his suitcase, mainly because he needed his ventilator supplies and medications. When he’d finished unpacking Josh took his suit off and hung it in the closet and then he headed to the en suite bathroom to relieve himself. He also poured himself a glass of water and swallowed his afternoon dose of meds.

When he returned to the bedroom he plugged his ventilator into an outlet next to the bed and sat down on the edge of the bed. He unhooked the ventilator tubing from his tracheostomy tube and removed the speaking valve. After he’d re-attached the ventilator tubing to his tracheostomy tube he grabbed a syringe from the container with ventilator supplies he’d placed on the nightstand and inflated his tracheostomy cuff.  He preferred to have the cuff inflated when he was sleeping, even if it was just a nap. When finally lay back against the soft down pillow he drifted off to sleep almost immediately.

# - # - #

When Josh’s iPhone woke him up about two hours later he felt rested, which was a relief. When he’d gone to bed he’d been so tired he’d been worried that a two-hour nap wouldn’t be enough to make him feel somewhat human again. He deflated his tracheostomy cuff, detached the ventilator tubing from his tracheostomy tube and and capped it tube before he headed to the bathroom to brush his teeth and wash his face.

After he finished his business in the bathroom Josh put his suit and dress shoes back on and headed back to the bathroom where he made a vain attempt at taming his hair, but he realized it was a bit of a lost cause. “Fuck it,” he thought. “People will be too busy staring at my tracheostomy and ventilator tubes to even notice my hair sticking up at odd angles.”  He adjusted his shirt collar and smoothed out the lapels of his suit jacket, then walked back to the bedroom where he put the speaking valve back into his ventilator tube and hooked it up to his tracheostomy tube again. He felt both nervous and excited as he grabbed the handle of the wheelie bag with his ventilator and headed out to join the party.

When Josh reached the French doors that led from the family room to the deck he stopped abruptly. The deck was filled with people and although many of them were familiar faces, people that knew about his condition, he felt overwhelmed by the prospect with dealing with them all. He wasn’t sure how long he’d been standing there when Jeremy approached him.

“There you are! I was just about to go and see if I had to drag you out of bed. Come on, we’ve got a cooler full of beers out there and Dad’s about to fire up the grill.”

“Honestly Jeremy, I’m not sure I’m up for this.”

“Up for what?”

“People staring at me like I’m some sort of freak and either avoiding me like I’ve got the plague or asking prying, way too personal questions. There’s no denying this gets people talking,” Josh finished, pointing to the blue ventilator tubes that extended from the tracheostomy tube in his throat to the black wheelie bag at his side. “Most people haven’t seen someone walking around while hooked up to a ventilator. That’s usually reserved for quadriplegics in power wheelchairs or someone stuck in a hospital bed.”

“Most of the people out there know you and your condition. The few that doesn’t…well, we’ll just have to deal with those one at a time if necessary. Come on; let’s grab a beer. Oh, Chris and Terrence are here and they both got excited when I told them you’re here.” Chris and Terrence were classmates of Josh and back in high school the three of them had been a pretty tight knit group. They’d lost touch after graduation when Chris and Terrence had moved away to go to college and Josh had spent a lot of time in and out of the hospital.

“Chris and Terrence are here? I haven’t seen them in years and I had no idea you were keeping in touch with them.”

“They’re both back in the LA area. We’ve got friends in common and meet up from time to time,” Jeremy explained. Then he wrapped an arm around his older brother’s shoulders. “Come on, Josh. Lets get out there. I need a beer.”

Josh knew he was defeated and reluctantly let Jeremy pull him trough the French doors and out to the deck. He noticed how several people were either staring at him or averting their glances as he walked past them.

“Here,” Jeremy popped the top off a beer bottle and handed it to him. Josh studied the label; he wasn’t familiar with the brand.

“What sort of beer is this?  I can’t remember seeing this brand before.”

“It’s a small local brewery. Terrence works for them and introduced me to their beers. It’s good stuff.”

“It’s kinda lost on me. I don’t have much of a sense of smell or taste smell when I’m on a ventilator.”

“Damn, I didn’t think about that,” Jeremy said. “That sucks.”

“Yeah, it does. But it’s the way it is and I try not to dwell on stuff like that.”

Before Josh could say anything else he felt a firm slap on his shoulder and Chris came into view.

“Well, I’d be damned! Look what the cat dragged in,” he greeted Josh with a grin. “Good to see you, Josh! It’s been way to long.”

“Good to see you too, Chris,” Josh replied. He noticed that Chris had gone silent and he was staring at his ventilator tubes and he followed his glance from where they were attached to the tracheostomy tube at the base of his throat and down to the wheelie bag next to his right leg.

“Anything you want to ask me?” Josh said coolly when Chris remained silent.

“Sorry man, I didn’t mean to stare, I just didn’t know…” his voice trailed off and he averted Josh’s piercing gaze.

“That my lungs have deteriorated to the point where I need a ventilator to help me breath most of the time?” Josh said, his voice a little calmer.

“Yeah, that,” Chris squeaked out. He swallowed and took a deep breath before he spoke again. “I mean…I knew you had some issue with your lungs and I heard you were pretty sick the year after we graduated from high school. I didn’t realize it was this serious.”

Jeremy jumped in to the conversation. “Why don’t we go sit down over there? Food’s almost ready.” he suggested, pointing to an empty table on the opposite end of the deck. Josh and Chris agreed and the trio crossed the porch and sat down by the table.

Before conversation could pick up again Terrence joined them, and he looked just as stunned as Chris when he saw the ventilator tubing attached to Josh’s tracheostomy tube.

“Okay, if this isn’t going to be the most awkward meal in history I think I need to address the pink elephant you’re all trying to not stare at.”

“Josh, I’m sorry,” Terrence started. Josh cut him off.

“As you probably know; I was born with a rare lung condition. When I was about 15 years old things started to go downhill. You probably remember that I never participated in sports or gym class in high school?”

“Yeah. And you sometimes had that oxygen tube in your nose during senior year,” Chris interjected.

“Just a few weeks after graduation I was admitted to the hospital with severe respiratory issues.  I left the hospital with a permanent tracheostomy tube in my throat and came home to a ventilator in my bedroom. For the past six years I’ve had to use a ventilator to help me breathe at night. For the past year things have gone downhill again and for over past couple of months I’ve had to adjust to using a ventilator during the day too.”

“You can’t breathe on your own at all?” Chris asked.

“I can, but it’s hard and takes a lot of energy. When I’m breathing unaided I get tired really fast and I get headaches because I’m not getting enough oxygen. As crazy as it probably sounds I prefer to have the ventilator help me breathe.” There was a stunned silence before Josh decided to try attempt to change the subject and shift the attention away from him.  “Well, enough about me and my health issues; what’s been going on in your lives for the past few years?”

To Josh’s relief attention shifted away from him and the guys started catching up on everything that had been going on in their lives in the years since they graduated from high school. 

To be continued.