Have I ever told you about my respiratory therapists, or RTs? Most of them have been working at this hospital for years. And so our paths have crossed numerous times.
There’s one man, a foreign man, who treats me. If I had to hazard a guess as to his heritage based on the accent, I’d say somewhere in the old Soviet, a Slovakian or Chechen sort of lilt to his voice. He has come a long way since I first met him. Back then, he would wear not one, but two surgical masks when entering my room. He placed them on his face in such a way that it resembled a duck bill. Couple the masks with his accent, and I can barely understand him. At least now he has ditched the masks. That way, I can more clearly hear him as he rants about the younger generation, how useless kids are, government, religion (oh…tons of religion). I don’t even have to bite my tongue because I’m too busy smoking the hookah pipe as he paces the room.
The other RT is apparently a doomsday prepper. He’s not off the scales crazy, don’t worry. But he is amusing, nonetheless. I sit through my nebulizer treatments listening to him tell me all about the various weapons and water purification treatment items he has purchased. He is also very quick to follow up with a statement about how he doesn’t want anyone to know, lest they come and raid his place when the crap hits the fan. He was kind enough to point out the nearest emergency stairwell to my room. I hate having a room at the end of the hall. If something goes wrong, there is no right or left option. Just one way in, one way out. But prepper showed me a nearby door for a quick escape.
And escape I did! But first, I finally had my PICC line put in. It took a great deal of time because apparently I am running out of good veins. I ache all over. It was a long afternoon. But, as bad as my arm and back ache, I know that having the PICC line puts me ever closer to a release date. Sure, I’ll be going home with 2 weeks worth of IV medication, but at least I’ll be at home.
Ok, so the escaping…Once I felt up to moving around again, I slipped out the door and made my way to the service elevator that the transport guys use. One of them used the key to let me in, rather than using the main elevators. I sat for a few moments and chatted on the phone while staring at the empty space that used to be the gift shop (how do you get rid of the shop? I like a little shop). I was supposed to be heading towards the cafeteria with one of the free meal coupons I was given by dietary. But the call of the revolving door was too strong, drawing me towards it. I jumped in, Elf style, and made a break for the side walk.
The muggy, salty, sea air hit me like a slap to the face. It’s been 3 days since I’ve breathed fresh air. It was quite windy, but still enjoyable, as the wind kept it from feeling so hot. I was, after all, wearing flannel jim jams and bedroom slippers with my Dixon’s Army hoodie. The sky was a bright blue, with the occasional puffy white cloud blowing by. You could tell that the sky was preparing for sunset, though not quite yet. The color kept changing, ever so slightly. I sat for a while on one of the benches. It’s pretty out in the quad, especially after hours when the campus isn’t bustling with students and medical personnel. There were various vendors and tents set up in front of the library. And classical music was being piped in from somewhere. It really was nice. I could’ve sat out there another hour or more, easily. But then I remembered my original quest: Food! The cafeteria closes at 7pm. I had to hurry.
I strolled in, being sure to say hello extra loud and perky to everyone I made eye contact with. It’s fun to watch people squirm. The first thing they notice is the jimjams but since I’m up and about, they can’t tell if I’m some contagious patient, or an escaped mental one. It’s a fine line, you know.
Anyhow, I made an epic salad. I’m supposed to be on a “high calorie, high protein” diet, yet they want me to watch my cholesterol. I considered this for a moment as I covered my salad with cheese, bacon, ranch dressing and croutons…and more bacon. I stocked up my tray with Fruit Loops, bananas, apples, cookies, pepsi bottles, and ordered a nice, hot Philly cheesesteak sandwich. Zomg, the onions and peppers on the grill smelled amazing. I headed back to the elevator that I had rode down on, pressed the button, and there I waited. And waited. And waited. Until, finally, an employee came over and told me I needed a key. “Can you use your key?” I asked. The woman smiled and walked away. Alrighty then.
So, I hauled my tray with my one good arm (the other still sore from the PICC) and headed towards the bank of elevators in the main lobby. Apparently, “Hold the door” is an alien concept to people around here. I walked up as two doors closed. A third set of doors opened and a man stepped out. “Hold the door, please” I yelled to him. His eyes scanned up and down at my ensemble and he walked quickly away. I decided to bypass the button and make a dash for it. Naturally, as I stepped between the doors, they closed on me. I caught the tray of food, salad still upright, mere inches from the floor, as the doors slammed into both of my arms. The two pepsi bottles, however, were not so lucky. Oops.
Hours have passed. I am tucked away in my tiny room, like Harry Potter under the stairs. I sat through the obligatory TV survey in order to earn movie credits. To my dismay, Hunger Games was the only movie on. I can’t win for losing. My dressing has been changed. My original IV line has been removed. My plan is to crank up the Spotify and type a few thousand words in ye old novel.
Suddenly, a loud noise coming from the hallway breaks my concentration. It sounds like someone sobbing. My nurse enters to check my vitals. With the door open, I can see diagonally into the noisy room. It isn’t crying at all. It’s laughter. Laughter so intense that the person is crying and choking. Wait. No…she’s seriously choking. Please don’t die, I think to myself. This is awful. I cringe at the sound. The wretching and hacking and gagging, wet sound. I begin to will my nurse to work faster. Perhaps I can Jedi mind trick the door to make it close. Someone please, block out that noise coming from that germ factory. This chick is downright disgusting!
“I used to sound like that,” I tell the nurse. “Before I started taking Kalydeco.” And then it hits me. “Does she have CF?” I ask.
The nurse walks over and closes the door, because honestly, she shouldn’t be discussing other patients with me. “Yes,” says the nurse. “She just got here. She looks like she might be in her early 20s.”
I am a complete douche. What must I have sounded like to all of you? I know it was that bad, don’t sugar coat things for me. In the months prior to the Kalydeco, I would wake up every morning and cough and gag so hard, that I would end up choking on it and vomiting for at least 2o minutes before I could even begin to face the day. This became so routine, that after a while, I no longer cried from the wretching.
How many movies, how many plays, how many meals, how many concerts, how many moments interrupted by my violent coughing and gagging? It’s no wonder no one ever wanted to put me in any plays. You can hear me dying from backstage. Here I sit, sick and in pain, sure, but muddling through, and I criticized the girl next door. This girl who obviously is not taking Kalydeco. This girl who is using every muscle in her body to fight through a cough. I’m a jerk.
And then I remember…she’s choking because she’s laughing. There is a young man in there with her; a boyfriend or brother, maybe? She is suffering in silence, the same as I always have. And she is happy. The two of them are in there cracking jokes and watching TV and making a party out of it…just as I always did with my sister. This girl isn’t gross. This girl is beautiful.
I want to go and talk to her, but that is forbidden in the CF world. Patients are not allowed anywhere near one another. It’s a cold, isolated place, that CF world. I want to tell this girl to hang in there. In less than 2 years, there will be a new drug available that will do for her what Kalydeco has done for me. I want her to know that she needs to live every moment, make every day count. No one’s time is guaranteed in this life. I want her to do everything.