Many of my mom's close friends have strongly bought into lots of alternative medicine quackery, and have preyed on us during desperate times to get us to join them. Nothing makes my blood boil more than an anti-vaccination mother with a bag full of essential oils and collodial silver, approaching me while illness has me roped and tied like a captive wild horse. Sure, I get pretty pissed off when someone admits they want more hardship in life because they are boring, but hell hath no fury like what happens when someone asks me if I've ever drunk lavender oil, gone vegan, or practiced yoga before, because I clearly haven't if I still have CF.
I'm usually a very quiet and gentle person, until someone with a PhD in Quackery tries to sell me something I know is about as useful as a shit flavored candy bar. Due to Cystic Fibrosis, and the mysteries that science has yet to uncover about Cystic Fibrosis, I'm way too often approached by people who think they have the cure to CF. But, unlike many vulnerable people who are easily swayed into that stuff, I actually know how to put things to the test. I grew up being everyone's favorite science experiment, so it would be pretty incredible if I wasn't well aware of how science works.
It is true that I do a few treatments that aren't exactly well-known or FDA approved, and am constantly on the lookout for more to improve my health. However, those treatments have a lot of actual scientific research to back them up, and produced some real, measurable results when I tried them. There's a huge difference between phage therapy treatments, which are approved by doctors, scientists, and government officials for real medical use in most European, Soviet, and Middle-Eastern countries, and the phony essential oils and detox juices American anti-vax mothers press me to try out every time I encounter them.
The only essential oil I'm willing to put into my body is Thyme oil. I usually put a few drops of it in my nose washes. However, it's not some magical cure-all like I've been told it is. It actually has a naturally-occurring chemical within it that irritates my sinuses, pressuring them to secrete more water to get things moving and out of my system. However, if I ever wanted to, I could just eat a habanero pepper and get the same results, although after watching Ryder eat several of those things in one sitting, I'll never even touch one. That stuff ruins your taste buds and sticks to your fingers even if you wash them. Ryder found that out the hard way when he went to the bathroom hours afterwards.
Even when I was dying of a severe Pseudomonas infection and had nothing to lose, I still put in my time to deeply research phage therapy on credible websites before I signed up for a scientific trial in Portland, run by actual scientists and doctors, to try it. Even then, I remained hugely skeptical, and constantly asked for more proof that the stuff worked. If I smelled just a hint of bullshit during the whole process, I would've never put a drop of the phage solution into my nebulizer, even though I probably had less than 5 years to live, during which I would've been too sick to enjoy life.
The doctors and scientists I met in Portland were pretty shocked, and in some ways probably offended, by my extremely fastidious attitude. However, the doctor my mom first contacted seemed to have been warned about me. She came into the room armed with a couple books, a packet of scientific papers, and even a poster-board she used frequently at scientific and medical conferences, with all of the information I could ever want to know about phage therapy.
I relaxed, but not completely. The doctor mistook my smile as an invitation to listen to my breathing. But before she had a chance to get her stethoscope under my clothes so she could listen to my breathing, I instinctively grabbed her wrist in a death-grip and didn't let go until she explained what she was gonna do. Even then, I remained very tense and aware of her as she listened to my rattly breathing. When she was finished, the look in her eyes said it all.
"This will be a hard fight." she sighed, "But you are going to be ok. These phages are made to help people like you. I am confident that they will save your life."
Her encouraging words were met with my skeptical scowl, and what was meant to be a frustrated sigh but turned into a malicious growl in my congested lungs. The doctor backed off a bit, slightly disturbed. I'd heard that sort of sweet-talk before, both from real doctors and holistic healers, and I wasn't about to fall for it again. I had no time for touchy-feely things at that moment. I was dying. I wanted credible scientific information and nothing else. I could feel all of my pent-up emotions later on in therapy.
Unfortunately, not everyone thinks quite like I do. Most people, especially those in dire need of help, are easily swayed by emotions, and can be lured into trying literally anything that is even slightly rumored to help their condition. And, since most doctors and scientists often lack the emotion most people are looking for, they are mistrusted and even labeled as evil by some groups. Real, credible medical science is then thrown into the wind, and replaced with touchy-feely phony stuff for the easily emotionally manipulated.
Most of my mom's anti-vax friends, who are heavily into holistic medicine, have sent me internet links to mommy blogs, which never actually based their claims on any reliable research or evidence. The few links those mommy blogs did provide in their articles just linked to more mommy blogs, and those mommy blogs only linked to even more mommy blogs, so on and so fourth. Whenever I confronted my mom's anti-vax friends for not giving me credible evidence for their wild claims, they went off on a rant about how the government, doctors, and scientists are all evil shills who just want to watch the world burn.
I happen to be on a first-name basis with most of my doctors and many scientists working towards finding a cure to Cystic Fibrosis. I don't think an evil shill would shed tears with me, celebrate my victories by literally jumping up and down, listen to me with great interest when I tell them about a new treatment I tried out that worked, and participate in numerous CF fundraisers in all sorts of weather. I just wish I never had to see so many highly respected and educated doctors and scientists running up and down the stairs at the Denver Broncos football stadium, wearing nothing but colorful speedos and mirrored aviators. Every time I see them back at the hospital in their lab coats and khakis, all I can see is who they were at the Broncos stadium.
There's no denying that there are a few bad apples out there, but they aren't too hard to pick out from those who are genuinely trying to make the world a better place. But, it's also important to remember that doctors and scientists are just regular people outside of their professions. And, like the people they are, they will screw up. That's why peer-reviewed medical journals, studies, and the scientific method exist, to prevent those individual screw-ups from becoming credible research. And, that's also why critical thinking is important. I'm not afraid to call a doctor out if they say something I don't agree with. Just because you have an M.D or a PhD in something doesn't mean you are immune to failure, or know everything there is to know about everything, including within your own field of expertise.
Most people don't have the same experience with doctors as I have. Because of the rarity of my condition, and especially because of how unique I am compared to the rest of the CF community, I've met almost every doctor and scientist working on CF in person at least once. My doctors' appointments are very frequent and very long, so I can meet with nearly every one of my 40 doctors on my team, as well as any medical students they may be dragging along. I never get to see their full faces in my check-up room, because they have to dress up in bright yellow gowns, masks, and latex gloves for my safety and the safety of other people with CF. Those disguises definitely take away from their humanity in a way, because I don't see a human face. I just see a hospital mask. I have to constantly remind myself that they are humans so I can have a decent partnership with them. And they have to constantly remind themselves that I'm more or less a doctor without a certificate, so they don't dumb down their explanations to me like they would anyone else outside of the CF world.
I don't have time to keep up with politics or the local news, because I'm too busy keeping up with modern science as best as I can. In order to stay ahead of Cystic Fibrosis, I have to keep up-to-date with Cystic Fibrosis research constantly. And, in this day and age, a new article about an exciting new treatment surfaces nearly everyday. Similarly, I find articles about people with CF doing treatments I've been doing for a long time, written as though those treatments are brand new.
If I opened my mouth for once, perhaps there'd be a lot more news articles and medical journal entries with my name on them. But I know better than to open up to people in the world, because of how insufferably stupid and naive so many people are. I don't like explaining my condition to people who will never understand, or will never admit that maybe they are wrong about some things. I don't appreciate being belittled for not looking sick enough or refusing to participate in medical quackery. At the same time, I don't like to be raised on a pedestal as if my fight with CF is something to be celebrated. When I was younger (and dumber), I let the CF Foundation put my face on their website next to some cute little paragraph congratulating me for fighting Cystic Fibrosis. But now that I'm older, I've refused their attempts to put my face out there for the world to see next to an article elevating me as the hero I don't see myself as.
Like I said, I have no pride in the fact that I have CF. There is no pride to be had. I didn't ask God to have CF. In fact, if I had the choice, I definitely would've begged Him to give me a normal body, rather than the one that I have to continuously maintain to prevent it from being ravaged by Cystic Fibrosis. But, it's an uphill battle, and only gets harder with age. I know one of these days, I will start to really lose my grip. And that is honestly my worst fear. The fact that my decline is almost certain only makes that fear so much worse. Even worse, that decline could kick off next month, or won't start to happen until I'm 90 years old. Either way, the uncertainty is real, and I've had to accept that I only do my treatments to maintain a dying illusion of control. Well, that's not entirely true, but there's only so much I can do to keep CF from rearing its ugly head. Sometimes, like a real horse, it will rear up anyway despite the chains and bits I've forced on it, and I'll be helpless against it.
