I should be sleeping.
It’s been days now of one hour here, another there, with a lot of breathless wake ups. They’re quite different than waking up from nausea or worry or just because you have to pee. Waking up without breath is true, vivid, Hell. You’re sweaty, you can’t talk, you’re afraid of disturbing the people around you so you try to tiptoe to the washroom to spit up all the gunk in your lungs without a sound. You try tea, doesn’t work. Try sitting up, distracting yourself, doesn’t work. Try puff after puff of a rescue medicine that just makes you gittery and anxious until your heart is beating so fast and you’re almost unable to stand when you use your last bits of energy left to shout or whisper, more like it– “I have to go to the hospital,” and only you knows just exactly what that means – days of being convinced that you have no idea what you’re doing, being taught and re-taught about an illness you’ve had all your life. Begging them for days to please send you home after they’ve doped you up with the goods so you can get a calm, peaceful night’s sleep once and for all.
The woman next to me turned out the lights early. I’m fairly used to the hospital rhythm, though. She’s the wise one, I’m the young fool watching reruns of Grey’s Anatomy because somehow shows about hospitals – watching fiction about people who have got it way worse than you in an atmosphere you absolutely detest – it’s just enough to make you comfortable in your sweaty, static hospital sheets. She knows better because in a half hour or so, one of the nurses is going to burst in anyway and wake us both up for one of us for the regular temperature, heart rate, oxygen level tests that make it all but unbearable to spend a night locked up in a place that’s supposed to provide relief. Sure, of course I’m happy they’re taking my vitals, that they’re keeping an eye out for me and making sure I’m not getting worse but it’s hard to drift off knowing that everyone’s waiting for them to bottom out. It’s hard to sit up straight with the lights on to take an aesosol for 30 minutes every couple of hours so that you make it through the vitals checks. Then, it’s hard to watch the lines go up and down and the numbers plummet when you know exactly what it means. It’s hard to have another doctor say, “You could have died. We’d like to keep you here for a while.” It’s hard to get last night out of my head so I can’t close my eyes. I can’t. Anyway, they’re all wet tonight.
I know, I know, it’s not that big of a deal. It’s a stupid illness that affects almost everybody. I don’t know many people who don’t know someone: a brother, a sister, an aunt, a best-friend with asthma. I hate watching people shrug and roll their eyes at me like it’s the easiest thing in the world to deal with, like they’ve got a clue what it’s like to lie down in their beds and feel like their breathing through a skinny straw. The fact is, they don’t and there are very different varieties of this illness that make it difficult for people to understand the severity of your symtoms.
Most people also don’t know what it’s like to be ashamed of themselves for being the one who wrecks a party by leaving in an ambulance just because someone brought their dog or the looks you gets if you want to have a couple cigarettes with cocktails (like everyone else around you) and look upon you with scorn when you then needs a hit of ventolin to get through the night. They don’t understand how much it hurts to avoid people you care about when they’re sick with respiratory illnesses in fear of catching something or how traumatic it is to fall in love with a man who dreams of owning a dog or a horse. Nobody gets how depressing it is to know that for the rest of their lives, they’ll need to work extra hard to afford the medication they need to get through the workdays or just how grueling it can be to try to go for a leisurely jog through a park despite being a relatively fit young person. Most women don’t shop for purses that must fit their ventolin, atrovent and aerochamber. Most people don’t know this stuff because it’s not their job to know this stuff. Still, today I encountered a respirologist who didn’t seem to get it one bit.
Every time I am hospitalized, it’s the same story. They send some resident to my bedside to lecture me about the way I’m controlling my asthma. That I’m not taking good enough care of myself if I’ve ended up in a hospital so many times. That I don’t take it seriously. They teach me AGAIN how to breathe better, show me a peak-flow metre as though it’s the first time I’ve encountered such an object while I secretly imagine my childhood collection of them on my dresser. Eventually they start asking the details, trying to pick apart my life to find the one and only reason why I’m still in this state, making me feel guilty for every choice I ever take.
“What floor do you live on? Do you have cockroaches? Have you noticed any mould in the building? Why didn’t you come to the hospital sooner? Why didn’t you increase your medication? Why don’t you have steroids at home?”
Sure, let’s address these, bitch. I live on the first floor of an apartment, the cheapest, most affordable one I can find in Paris. I don’t have cockroaches but it’s Paris and the place is old so sometimes I’ve got mice and I’m not allergic to insects but I am allergic to rodents. Sure, I’ve noticed mould in the building. Have you got a better place for me to stay? A better job? A better visa? Pass it along, I’m in! Why didn’t I get here sooner – well, that’s my favourite question of all. I have been waiting 8 months for health insurance in this country…8 months of taking days off work so I can get this magic number. 8 months of waiting in 2 hour+ lineups to be told that I need another piece of paper they forgot to tell me about on my 6th and 7th visits, yet another piece of paper that’s going to cost me yet another 30 euros. I should tell my government that our birth certificates are insufficient. Yeah, I’ll get right on that if you can afford to buy me a ticket back to Canada on the less than minimum wage job I’m able to get in this frickin’ country despite my University degrees, fluent French and genuine effort to immerse myself in the culture. Why didn’t I increase my medication? Because the stuff is like gold to me – gold given to me for free by a very generous doctor in my hometown once my respirologist retired and my pediatrician passed away and I had no one else who quite understood the predicament I was in. Because I’ve only got one week of the stuff left as it is and I’m trying to make it go as far as possible because I don’t have 400 euros a month to pay for the stuff and NEVER EVER will. I haven’t got steroids at home because to get them, you need to pay 30 euros to see a doctor and even then, they won’t likely trust you because they don’t know your history and they don’t just hand out meds like candy anywhere, even if you know as much about your illness as any doctor by now. They don’t know how many nights you stayed up having treatments as a little girl, making midnight tea parties for she and her stuffed animals with a plastic mask strapped to her face to get her through it. They don’t know what it felt like to be a teenage girl on so much medication that it made her face bloat out like a chipmunk and her skinny jeans fat ones. They don’t know how much it sucked to have to sit out an inning or a period because there’s not enough oxygen to stand straight and you’re already seeing stars. In short, they don’t know a God Damned thing about me and I’m sick of being brought to tears by complete strangers who don’t think before they open their fat overly-textbook-educated mouths.
This time, I cut the bitch off in mid-sentence because she told me I ought to forsee attacks and manage the symptoms before they become issues. Really???? So, for example, how am I to know that someone who’s just seen a cute Labrador in the street bent over to pet him and got hairs all over their coat and jeans. How am I supposed to know that that same person sat on the same chair as me just before me on the metro or has stopped by my place to help with my homework? How am I supposed to know the kids I babysit for spent the weekend horseback riding and haven’t washed their knapsacks yet? How am I supposed to know that if I avoid every possible risk at a wedding of two great friends– arrange to sleep in a van of a friend with no pets, away from the hostel where the rest of the gang are staying which operates occasionally as an equestrian centre, away from other possible problems like rooms in a big castle on a property big enough to have horses and dogs and therefore likely to have had clients who touched them and spread the dander onto the furniture? Should I not go to the wedding at all? Then, I ask you, how can you stop people from resenting you for flaking out one to seven times a week on the day-to-day reality that might end up being harmful to your health?
And finally, you tell me, Lady, how am I supposed to know that the kid I look after every day is going to sneeze in my mouth while I’m changing his diaper and that I’ll catch his bronchial cough on a Tuesday morning, despite washing my hands like surgeon and anti-bacterializing everything? I can’t. I’m not God. I’m not even close. Christ, I can’t even control my lung capacity, let alone the everyday risks that are everywhere and everything.
I don’t take my illness seriously enough? Really? Do you know how many years I spent depressed, wanting to die because I knew that my life was going to end like this, slowly losing breath until there was none left? How much courage it took to play sports knowing that I was playing with fire every time I tried? Do you know what it was like to listen to both my grandparents suffocate to death in just the same way I’ll likely go? Do you know how many hours I’ve thought about not having children out of sheer fear of passing this onto them? Or how I look at donor cards and think to myself, ‘really, could you really give this shitty, broken to another person?’ Do you know what it’s like to lie on a stretcher and have people watch you, stare at you, wondering what’s wrong with you and if you’re going to make it? To have your skin pierced and stabbed and your bone marrow tested, needles broken off in your forearm? To have to try out new medicines in desperate hope without knowing the side effects? To spend a year throwing up because you were on such high doses of meds that you couldn’t swallow properly? Do you know what it was like to take up smoking because it actually made the every day pollutants easier to digest than trying to live in a bubble that doesn’t exist? Do you know what it’s like to desperately at least want the CHOICE to breathe this way or not? No, you don’t. Would you give anything for a body that worked? No, you wouldn’t, because no one has ever threatened to put a hole in your throat so you don’t die.
I’ve been laying here for hours already, crying into my pillow listening to an old man down the hall choke to death. He can only exhale and even that is depleting him quickly. He’s coughing up everything, mucous, blood, tar. Even though I’m not there, I can tell you that his throat tastes like metal. His back is so tense from the motions of the coughing, he’s in agony. Every cough makes his eyeballs want to jump out of his skull and he’s seeing stars. He’s seeing stars because his body can’t take this kind of trauma any longer. He wants to die. I know this because everytime I have an attack like this, I want to die. I want it to stop – the struggle, the pain, the spinning head, the pulsing temples, the black and white hallucinations from an overworked cranium, the pain in my chest, the quickened heart rate from too much ventolin that’s not working and the dry mouth from too many preventatives that haven’t prevented a damn thing. I want to die. I just don’t want to go like this, and definitely not in a place like this. I don’t want this struggle and pain to be the last thing I feel. Just the thought of it and my face is wet with fear. I’ve been scared of this my whole life and every time I lose my breath, I wonder if this is the one. Is this how I go? Are these ceiling panels the last thing I’ll ever see? Do I die alone? Or worse, in a room with a stranger? Does everyone else know how I feel about them? Is this diabetic meal of steamed fish and buttered macaroni the last thing I’ll ever taste? If I close my eyes tonight, am I going to wake up?
Believe me, I take this very, very seriously.
Of course I do. This is my life. Even when I do everything just right, I end up right back here, in yet another blue tie-back v-neck gown, arms filled with needles and bruises, greasy hair, IVed-up tape marks all over my chest from all the heart monitors and yet another lecture from another person who thinks they’ve got me all figured out. And I’m scared enough. I don’t need some healthy bitch to make me cry. I can do that all by myself without any help. I didn’t come here to feel worse about myself. I came here to breathe a little easier.
Wish me luck. I’m going to close my eyes now and try to think happy thoughts.
Lights on. Seat upright. Time for more tests. Meanwhile, there’s a senile old man taking a leak in front of the nurses station. Nothing like a little elderly nudity and endless machine beeps all around at midnight to get me into an REM kinda mood.
Maybe I’ll sleep tomorrow; if they discharge me that is.