It’s as easy as breathing…
I am so sick of that phrase. Literally. (And yes, I understand what “literally” means.)
Breathing is supposed to be easy. When it’s not, the medical community runs tests, assigns diagnoses, and prescribes treatments. Allergies. Asthma. Chronic Obstructive Pulmonary Disease. Cystic Fybrosis. Emphysema. Lung cancer. Steroids to prevent airway constriction. Anti-inflammatory medications. Vaporized medications. Breathing therapies. Medical bracelets. Chemo. Surgeries. Transplants. Supplemental oxygen.
I would like to start out by assuring you I am in no way marginalizing the above chronic pulmonary issues. I have known and loved people who have struggled with such conditions, some of whom are no longer with us. That having been said…
I. Am. JEALOUS.
Not of the conditions themselves. Absolutely not. No, what makes me jealous is that their foe, their albatross if you will, has a name. It is widely recognized and understood amongst the medical community. The general population has a general understanding that the condition exists and don’t question its validity. There are a set of approved treatments. People know what to do in the case of an attack or when someone suffering from one of these conditions is experiencing some type of medical distress. How do they know? That’s right, I’m even jealous of the medical bracelet they get to wear. I’m even jealous when I see someone carting along an oxygen tank on wheels.
No, I don’t have some weird psychological disfunction that makes me want to have a potentially debilitating condition or disease. The thing is, I have a debilitating condition. But you’ve never heard of it.
Don’t feel too bad. Most people haven’t. It’s so unknown that even I don’t know its name. (Ha ha.)
DEEP BREATH IN
Let me start from the beginning. I haven’t always had respiratory problems. I may have had other issues, but my lungs were good. Until bronchitis took me down pretty bad in high school. Sophomore year, I believe, 1999 for those of you keeping track.
Bronchitis sucked, but I got over it eventually with lots of rest and the help of some drugs. You know, the kind that kill everything in your body, whether or not it’s supposed to be in your body. But my lungs were still…sluggish. They took longer to recover than the rest of me. I had these completely random and completely terrifying episodes of not being able to breathe. A followup with the doctor labeled me as asthmatic, I got an albuterol inhaler, and I was on my way.
It was all well and good until my first episode after the diagnosis. In the panic of not getting oxygen, I gulped in two puffs of chalky albuterol deep into my lungs and…nothing. I still couldn’t breathe. No change, except the steroid made my throat feel weird (and the little bit that hit the back of my tongue – GROSS!), and afterward I felt very shaky.
Nevertheless, I continued to faithfully use my rescue inhaler as directed. After all, I had asthma; inhalers treat asthma. Junior year I started to realize that the episodes – I now refer to them as “reactions” – had a specific trigger: cigarette smoke. Yes, standing next to someone smoking was out of the question. But I could tell you who every smoker in my class was, based solely on who I couldn’t sit anywhere near in any given classroom. Risidual smoke lingering on their clothing was enough to give me trouble, whether or not I could smell it. Inhalers still did me no good. Life was pretty terrifying.
DON’T HOLD YOUR BREATH
By senior year I’d had enough. I hated how jittery the inhaler made me so I just wasn’t using it. I had begun to explain my condition as being “allergic” to cigarette smoke. My parents sent me to an allergist to try to get this figured out.
Interesting side note: I am severely allergic to grass and dust, fairly allergic to pollen and mold, and somewhat allergic to cats. I’ll use that as an excuse to get out of mowing, dusting, cleaning, and generally spending time in nature…but I refuse to let a little cat allergy get in my way of enjoying cat cuddles. Not ever.
Scene: Allergist’s office. I’d just gotten the results of my scratch test. My back and one arm were pretty itchy. I was a frightened teenager who just wanted some answers already. My mother was in the room with me, also wanting answers, because the only thing more frightening than not knowing why you can’t breathe sometimes is not knowing why your child can’t breathe simetimes.
The allergist (allergy doctor? um…what is the correct term for this type of doctor?) came in to inform me of my obvious allergies. When I explained my reactions to smoke, she immediately dismissed me. “Oh, no you can’t be allergic to cigarette smoke.” Her exact words. She tested me for asthma using some breathing tests, and…I passed. I did not have asthma.
I repeat: I did NOT have asthma. This was great, albeit obvious, news!
I asked the doctor what this might be, if it wasn’t asthma and it wasn’t an allergic reaction. Her response – to my mother, because she never acknowledged me as a human person the entire time – was that it was all in my head, that I was having a panic attack from smelling the smoke.
God bless my mother. She could have taken what the doctor said to heart. She could have told me to work through my issues mentally to get over it (the doctor’s advice). Instead, she told the allergist she didn’t know what she was talking about, that my reactions were not “all in my head,” that they happen whether or not I could see or smell the smoke. I was beyond grateful to know that Mom believed me over this doctor. But of course she did; she had witnessed my reactions firsthand, this doctor never had.
I was disappointed that I left with more questions, but at least I knew it wasn’t asthma. Or, I guess, allergies.
I headed to college with no proper diagnosis and very little information. College presented its own set of challenges. For the first time in my life, I lived among smokers. Every trip outdoors posed a danger. Leaving a window open in my dorm room was done at my own risk.
I had mild reactions at least a few times a month. I was getting pretty good at holding my breath in anticipation of exposure to smoke while leaving or entering buildings. Not the best solution, but it helped a little.
And then I had multiple reactions within one week. I went to a clarinet lesson already experiencing difficulty, but my professor could tell right away something was very wrong. I was disoriented. I had breathing problems. I couldn’t focus. She arranged for someone from my floor to come get me and take me to a nearby E.R. I don’t know who drove me and sat with me in the waiting room – maybe my RA? – but I’m glad she was there. I was completely out of it. The doctor didn’t know what to make of my symptoms. I remember asking for oxygen a few times. Eventually he set me up with a nebulizer and an oxygen mix. After being released, I was deposited in my dorm room, where I slept for at least twelve hours. I kept the wristband from that visit for years…a reminder of just how serious this nameless foe could be.
I missed class. I had some other close calls. We had a fire drill during which all students were to gather on the lawn between residence buildings. Students packed closely together during mandatory outdoor time and some of them lit up cigarettes. College was probably the scariest time in my life, thanks to fellow students. But what could I possibly tell them? I didn’t know what was wrong, and if it doesn’t have a name, it doesn’t count as a medical condition.
WHAT’S IN A NAME
My college campus sat in view of one of the best hospitals in the Midwest, Froedtert Hospital. After the emergency room scare, it was decided that I needed to see a specialist and we needed to try to find some answers. If treatment wasn’t an option, maybe I could at least get some answers.
The pulmonary specialist at Froedtert looked a lot like my seventh grade teacher. (I think it was the thick mustache and big glasses.) I remember shaking I was so nervous for the possibility of getting answers, or of being told by another medical professional that it was “all in my head.” There were tests. I breathed into too many different machines to count. I don’t remember most of my time at the hospital, but I do remember meeting with the doctor when all the results came back.
Reactive Airways Disease.
Three little letters. It had a name. Well, sort of. At the time I was diagnosed (circa 2002-2003), not much was known. But it was clear to my doctor that my lungs responded adversely to specific stimuli, causing a harmful and dangerous reaction. He confirmed that I did not have asthma. I only cared that he acknowledged my symptoms!
What is R.A.D., you ask? Well, here’s the problem…Reactive Airways Disease is actually a catchall term for an entire family of respiratory conditions, asthma among them. Fun fact: as of a few years ago, it was the fastest growing health problem amongst children, thanks to secondhand smoke, caused by children’s exposure and/or expectant mothers’ exposure. In other words, SMOKING IS BAD FOR YOU AND WORSE FOR EVERYONE ELSE. In case you weren’t aware. You’re welcome. PSA done.
TO MY LAST BREATH
Armed with a (sort of) diagnosis, info on the dangers of smoke, and a growing knowledge of state laws regarding smoking regulations, I returned to campus on fire – forgive the terrible pun – to make the school safer for me and for my classmates. I lobbied for a campus-wide smoking ban, which was laughed away. However, existing rules stated in the student handbook regarding distance from buildings were no longer overlooked and ash cans were moved to the correct legal distance from doorways. Small victories. I wasn’t very popular among smokers. But hey, a girl’s gotta breathe…
Senior year I was cast in an all female production of Waiting for Godot. Yes, I’m sure Beckett was rolling over in his grave; you do not mess with Beckett. Still, I was so very proud of that entire production. Our cast was a joy to work with. The director Jay was crazy enough to pull it all off, plus he was our set design professor, so the set was ridiculous (I mean that in the best possible way!!!). I played Pozzo, the self-centered jerk. I had to learn two skills to play Pozzo: crack a whip (yes, I learned), and light a pipe. Jay knew of my condition, so he bought a brand new never-been-used pipe and taught me how to actually light it. Every performance I “lit” the pipe like a pro, causing mild heart attacks among friends and family in attendance.
EVERY BREATH YOU TAKE
Now that I live in the “real world,” I continue to have run-ins with smoke, though it happens less often. The trouble with my condition is that it is degenerative – as in, it won’t go away and it will continue to get worse.
The state of Wisconsin passed a law about five years ago which bans indoor smoking in all workplaces, with very few exceptions. Bar owners and Republicans fought pretty hard against passing this law, screaming loss of income and individual freedoms. I was pleased to virtually pen a letter to a local representative whom I know (my former high school Government teacher). He had been speaking out against the law; I shared my personal experiences with him, along with some facts gleaned from research into both Reactive Airways Diseases and the harmful effects of secondhand smoke in general. We discussed our points of view, and some of the information I provided struck a chord. He shared my letter with some of his fellow politicians. I don’t know for sure what impact I had, but the law passed. Businesses did not see a loss of income; in fact, patronage increased in most bars and restaurants.
Before you begin screaming “personal freedoms” at me, think of it this way:
Drinking alcohol is legal, if you’re of proper drinking age; you can even get drunk, legally. Where your personal freedom to become intoxicated ends is where your right to get drunk can infringe on other people’s rights. Drunk driving is illegal and taken very seriously. If exposure to secondhand smoke causes as many serious health issues as medical research has shown, how is smoking in public acceptable? Why should his right to smoke trump anyone else’s right to breathe?
BREATH IN, BREATHE OUT
What exactly is a reaction? Not knowing a name beyond R.A.D. has numbed me to the horror of describing it all. So, here goes…
I can breathe normally most of the time. However, when tobacco smoke is introduced into my lungs (this has happened both indoors and outside), the change is immediate. I have a sort of stuttering cough – as my lungs try to expel the undesirable chemicals, I assume. Inevitably I need to take another breath, as I didn’t get the oxygen I needed with the previous breath. I try not to, knowing what’s coming, but if I take a normal or deep breath in, I feel the strange sensation of breathing in “heavy, dead air;” I am able to take air into my lungs normally, but my lungs are no longer pulling the oxygen into the bloodstream to circulate it throughout my body. I’ll admit, at this point I do panic. I have no experience with drowning, but I can imagine the sensation is similar, since our airways can’t pull oxygen from water.
As my blood circulates poorly oxygenated blood, I become lightheaded, my brain starts to feel “fuzzy.” And time slows down. All this time I am gasping and trying to get away from the smoke. If I don’t know where the smoke is coming from and/or if I don’t have a friend or family member with me, this can be particularly frightening. I know that I have lost consciousness from this in the past, and I am afraid what might happen if I pass out and don’t get oxygen in time.
By this point, my breathing attempts are shallow. My entire body feels heavy, sluggish. I can’t focus on anything. I feel an irresistible need to sleep. Can’t keep my eyes open. The panic remains, but my body is numb. If I haven’t gotten away from the smoke by now, I will absolutely need to go to the E.R. and get oxygen.
Once removed from danger, my reaction is far from over. The lack of oxygen – I believe this could easily be considered respiratory distress – has lingering effects. I am exhausted beyond belief, sometimes sleeping for twelve or more hours straight as soon as I get to a bed/couch/chair/floor. The need for rest has become irresistible by this point. For the next week or two events don’t always stick in my short-term memory; I can’t remember words, and I feel like a total ditz. The “fuzziness” in my brain seems to take forever to go away. Physically, the effects also linger. I yawn a lot. A LOT. This lasts for at least a few days. My limbs feel weaker, and I usually find strange random bruises – not from running into or hitting anything, so I really don’t know where they come from. I feel like my heart is beating faster, working harder after the lack of oxygen. It also feels like there’s a lot of crud in my lungs, and I cough/clear my throat more than normal. Sometimes with the more severe reactions I cough up blood. This used to scare me. Now I’m used to it.
NO SMOKING – OXYGEN IN USE
My nameless Reactive Airways Disease is very real, I assure you. I have lived with it for over fifteen years. I may very well die from it, or complications caused by it. I have found myself shifting between the various stages of grief while dealing with whatever it is I’ve got. Sometimes I’m very angry and I hate smokers. Sometimes I’m in denial about it. Sometimes I dwell on what will happen as it gets worse, and I’m sad. Other times I’ve almost accepted it…almost.
But I still want answers. And more than that, I want this condition to be common knowledge in the medical community so that no one else ends up misdiagnosed, misunderstood, doubted, and feeling so alone for so many years. I want oxygen to bring with me the way asthmatics have inhalers. I want stricter smoking laws and I want them enforced. I want people to believe me instead of accusing me of “overreacting.” I want a lot of things, I suppose.
Most of all, I just want to be able to breathe and take it for granted…