This is a phrase I've heard quite a lot lately, and frankly, I can't argue. But hey, what can you do? I am on oxygen. My oxygen tank backpack is named Kevin.... Kev, for short. As to why I am on oxygen... well, it gets complicated. I have been having some really quite bizarre blood problems lately - I see a hematologist and everything! Recently I've had problems with hemolytic anemia and I've had lots of problems with blood clots. I know when people ask about the oxygen and I bring up blood, it doesn't seem to make sense, but I've noticed that when one body system is having issues, others may also suffer. For example, though, more specifically, one of my issues is low hemoglobin, which (if you aren't really familiar with blood) carries oxygen around the body. Thanks to these kinds of problems, here I am!
But I didn't write this blog just to whine! From time to time you see stories about people who perform social experiments- they do radical things and watch how the general public responds: someone undercover pretends to be homeless, or Tyra Banks dresses up in a fat suit. ( I didn't make that up.)
Well! It was never my intention (since I had no real say in the matter) but wearing 24/7 oxygen while in my 20's has been a bit of a social experiment! It has been kind of fascinating seeing how different people respond to me, and how I respond back to them.
So below I've compiled a few different behaviors and anecdotes from my unofficial field diary -also known as a notes on an cell phone. I hope it's interesting, or at least gives you a chuckle! I know I've gotten some laughs out of it... EXCEPT when I drop oxygen tanks on my feet... that shit HURTS!!
- Probably the biggest thing I've gotten out of this experience is this crazy bond I have with other people on oxygen, the demographic being composed almost 100% of people 65 and older. Seriously! We ask each other where we get our oxygen concentrators and bottles from (I'm an Apria girl) and we compare equipment, like, "Hey, nice tank...!"
We chat about how long our oxygen bottles last and gripe about the cost. It's funny, with my colorful hair and tattoos and pretty quiet demeanor, in the past, I've really felt a kind of generation gap with the older folks, and I think they feel like they can't always relate to me, either. But having Kev has bridged that gap beautifully! Despite our differences, we really get along. - It is quite interesting seeing who actually brings up the oxygen in conversation, and who is too shy or too polite. I'm used to "the look", though. I will be ringing a customer up at ACE or I'll be comparing dog food prices at KMart or getting takeout from the Asian Buffet when I get "the look". I sense people's eyes flickering over me. I see them gaze at the cannula in my nose, and I can feel their gaze drop down to Kevin. But when I look directly at them, most stop their ogling immediately. May I just say to everyone, it's really quite okay. I don't mind!
As for who brings it up, and how, it depends. People who know me well, of course! But I've had quite a few acquaintances and some downright strangers ask, too. The strangers especially are usually pretty vague but very polite: "I hope you're okay, you're too young to be on oxygen!" - Speaking of other people, it's not just looks and questions, it's how I am treated in general! And this isn't strictly for me, I think it applies to almost everyone on oxygen. People treat me like I'm fragile. Breakable. Which, I guess I kind of am in some ways. When they step on my oxygen hose (happens ALL the time, not a biggie) they apologize profusely, and ask over and over if I'm okay. I was at SuperSave the other day and bought a few bags of stuff. I was slinging Kev over my shoulder to take me groceries to the car when the cashier spoke up.
"Hang on, hon. HEY, YOU! Bag boy! Carry this girl's stuff out for her!"
"Oh, that's okay," I told her. "I got it."
She gave me the look. "Nope," she told me matter-of-factly. "No, he's gonna carry them for you."
It was a little embarrassing but really nice! - Speaking of Kev, he has been the source of some great frustration, embarrassment, and turmoil for me. What you must understand about oxygen tanks (if it's not obvious) is that they are metal cylinders of compressed air. I've got the little valve that hooks up with my hose, but there are times when Kev has taken a dive and the top of the tank becomes loose. You would not BELIEVE the mortifying racket it makes! This obscene hissing roar, like a hot air balloon's fire, but much higher pitched, and it won't stop til you tackle the bottle and roughly screw the top shut. It's bad enough when it happens at home- cats dive for cover and your heart pounds- but it's even worse out in public. Like at work, surrounded by staring people. And, ohhhh, the one time it happened in a restaurant. Thanks a bunch, Kev.
Recently, I took a family trip out to Tulsa, which was AWESOME! The bad news? I had to take Kevin and my four refillable bottles and my oxygen concentrator AND my bottle filler. It almost didn't fit in the back of my car! At the hotel we had to find a luggage cart just to get Kev and his buddies up to our room. And my poor sister! She had to put up with the concentrator's constant humming and she was a trooper and helped me fill all the bottles.
- While in Tulsa, I had lots of "looks," but I had two very different strangers bring up the oxygen:
The first was a young woman in a museum. We all rode an elevator together and she complimented me on my hair. When we got to the floor, she stopped me.
"You're awfully young to be on oxygen. Do you mind if I ask why?"
I didn't, and gave her the blood spiel.
Then, she caught me off guard. "May I pray for you?"
"Errrrrr," I mumbled. "O..kay. Sure." You may or may not recall that I am not a religious person. At all. But I knew she was just being nice. And, by golly, she bent her head in that museum and prayed to God for me. I would be lying if I said I wasn't a tad uncomfortable. My sister was with me and gave me a reassuring squeeze on my arm. And then it was over!
The very next day, my sister and I were hauling my tanks out to the car when we were stopped my a young man.
"Hey! You guys!" he hollered at us.
We looked at each other and cautiously turned to him.
"Are those oxygen?" he asked eagerly, giving me the look, then looking at Kev and the other tanks. My sister has since told me that she sometimes feels weird carrying the bottles in public, and she has a point- they do look sort of dangerous, like a bomb or dangerous chemicals or something.
"Um, yes," I told him.
He walked up closer to us. "Nice! Do you ever get high on them?"
"Uh, no," I got out.
"They're medicinal," my sister told him shortly.
"Sweet, sweet," he said, in a very mellow voice. "You guys need any help carrying?"
"No, we don't," my sister said flatly. "Thanks." And we hauled ass out of there to our car!
Thanks to some GREAT doctors and some strong meds, I am absolutely on the mend! I've even started walking at the gym again, albeit slowly. I have started using my pulse oximeter to keep track of my oxygen levels and I hope that it won't be too long til I'm off Kev!
Kev has taught me a lot, though! After the couple Kev-gone-rogue "hissing" incidents and me tripping over him on a daily basis, I've learned that it's always okay to laugh at yourself, and he has really shown my the kindness of people, even strangers.
Thanks, Kev.
Sarah
P.S. Just to be clear, I'm not in a wheelchair! Those pics were from a day at the Albuquerque zoo when I was feeling really weak, so we rented me a chair for the day... 7 whole dollars!
