May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day. After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.
I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.
Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.
If you make a mistake, press star
As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.
(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)
I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.
I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.
“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”
Press 1.
“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”
I am pretty sure pressing star will not help me.
Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.
Press 2.
I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.
It makes sense if you have chronic disease!
move from the past to the present tense: you can start over again.
start over again, addison road
2014.
I am usually not big into anything attached to a new year—it’s another overhyped occasion that literally means nothing—in the words of Bryce Avary, “Who says it has to be a new year to start a new year?” I try to start again every single day—because each time I do, I hopefully find myself farther away from where I was and closer to where I’m going. Unlike most years, I didn’t do a recap post on December 31st—I know I still will in my head, but I refuse to re-live last year again in writing.
I’m starting over. Again.
I’m alive.
The original post in this series can be found here—the recap of that discussion can be found here. The second set of tracks can be found here.
Previous tracks: The Resolution – Jack’s Mannequin, Even if it Kills Me – Motion City Soundtrack, Feeling Good – Muse (cover), Typical – MUTEMATH, Workin’ it Out – Hilary Duff, The Year of Discovery – Tess Dunn, Caves – Jack’s Mannequin, Twenty Two – Millencolin, Diane the Skyscraper – Jack’s Mannequin, Weightless – All Time Low, Watch the Sky – Something Corporate, I Swear This Place is Haunted – A Skylit Drive.
I cut the last post off in July—from the point of August on, even though the battle had yet to begin again in September and was nowhere near over, the vibe of the tracks shift to recovery.
Rise – A Skylit Drive
I wrote in mid-July about feeling like a grenade. Rise was a response to that–
some days i feel like a loaded gun / i paint a target on everyone […]
some days i feel like i’m fucking done / i’m waging war against everyone / it’s killing me, like it’s killing you / what’s done is done, what will you do?
–but also to freedom from that feeling, even if briefly. From February through September, August was the only good month—the only month that I felt healthy, like I could do what I wanted. Like things were falling into place. I went through August with no ER visits, no blood transfusions, and only scheduled doctors’ visits. I started Concerta for ADHD, and I could feel my world changing for the better as a result. I went to Vancouver—I left my surroundings, I felt more free than I had in months.
run / you think you’re running away: i think you’re running in place / i’ve never seen you this way.
do not pray for an easy life / search for the strength to walk the line / i see a hope that’s hard to find / so don’t run away.
this is the end.
Things were better, it could have been the end, things could have gone back to a better semblance of normalcy—I re-ignited the hope just to go into another battle.
Cars and the Pixies – The Rocket Summer
can i be honest? / i’m ready for this year to die. / can’t help but notice / every corner where something ain’t right / i’ll be honest, i’ve got the kind of mind right now / to not be modest / i’m sick of walking on eggshells / and i believe that life should be epic.
the cars and the pixies / and the cure ain’t gonna fix me.
September was when I finally realized that I needed the chaos that had been 2013 to this point to end—“ready for this year to die”. I knew that, slowly this time, I was on another decline health-wise and there was nothing I could do except wait—the hormone meds weren’t working and I was being told surgery to remove the fibroid was 2-3 months out—at the rate I was going, there was little to say I’d still be alive in 2-3 months. It was like being in a medical-system crapshoot.
the coin you call it / if heads we’re going back to the heartland / if tails it’s falling, you know, i think i could care less where it lands / i’m exhausted, and overwrought / i’m a message in a bottle, tossing, turning here out in the sea / i’ve been swimming so long, come on / i’m ready for you now to read me.
After nearly dying in September, after surgery… this was what became true:
this is the year we start living (the cure ain’t gonna fix me…) / who says it has to be a new year to start a new year?
Word Forward – Foo Fighters
goodbye, jimmy / farewell youth / i must be on my way, i’ve had enough of you […]
years that i’ve wasted, these i-owe-yous.
they’re just fucking words. / this is life or death. / it’s time to clear the air / you’d better save your breath. / say have you heard, the poison in my heart / the voices in my head? / years that i’ve wasted, these i-owe-yous.
i meant every word, for word, for word, for word.
but it’s only words. / i meant every word / they’re just fucking words.
“This is life or death” is among the only way I can represent what September was. There really is no single song that can do that moment justice, because that same moment where I was lifted off of the ER bathroom floor and wheeled into resuscitation was the same moment that the good started happening—and with the recovery, the return to life, came the real battle. (There were many times where David Grey’s A Moment Changes Everything felt appropriate, but really, it was the collection of moments that lead to the resolution, not a single one).
The ridiculous thing about medicine is a lot of it happens based on words—it’s based on your ability to articulate a situation, and usually it’s based on the fact that they care only about your symptoms, not your feelings. I left an appointment where I dropped an f-bomb in my primary doctor’s office vowing never to return (which I did, three months later after a terrible experience with a potential new doctor), because it didn’t seem to matter that I’d almost fucking died that I wanted a new gynaecologist—or that I needed a new one. It didn’t matter how I felt–I’d wasted nearly a year of my life, I’d almost fucking died and I wasn’t into the excuses. A week later I did a less-fabulous job reaming out my now-former gynaecologist, because he was so sincerely apologetic. I gave him a bit of a diatribe, I meant every word, and I left. Which is huge when the past five months of my life had basically revolved around this man especially. The thing is, I’ll never know if my story will change any of his patients’ outcomes—because they’re just fucking words, on my end and his.
New Skin – Incubus
Recovery, the healing process, is largely metaphorical based on a physical concept. It’s not physical, it’s all in the perception of the physical aspects. There’s little I can really articulate about the process, other than finding myself again—which is where this song comes in.
at first i see an open wound / infected and disastrous / it breathes chaotic catastrophe / it cries to be renewed: please renew me! / its tears are the colour of anger / they try to form a scab / to the touch, it’s stiff and resilient: underneath a new skin breathes.
it’s all been seen / with the exception for the right parts / but when will we be new skin?
as outwardly cliche as it may seem / yes, something under the surface says “c’est la vie” / it is a circle, there is a plan / dead skin will atrophy itself to start again / look closely at the open wound / see past what covers the surface / underneath chaotic catastrophe / creation takes the stage
dead skin will atrophy itself to start again
it’s all been seen / with the exception for what could be / when will we be new skin?
[…] fallacious cognitions / spewed from televisions / do mould our decisions / so stop and take a look / and you’ll see what i see now.
Not Right – The Rocket Summer
In more than one situation, but the medical situation that was 2013 being the prime example, it has occurred to me that the true impact of something doesn’t hit me for two months. That was early December (or, the very end of November if we want to be technical). It’s the point where I can’t distract myself any longer from what happened and I have to figure out a way to deal with it that works. I’m still figuring it out. I’m “blistered but I’m better”, I don’t know what it is, but off and on? I’m just not right.
But I’ll get there.
I found this song literally last week on iTunes and those moments where oh my God, this is my life? I had one.
sundown’s coming / don’t let it stop you from nothing / cause ahead i see that there’s a light on, a right on / break down in pieces / tell me all your secrets / you won’t get lost, i promise / there’s a light on, right on / there’s a light on, right on.
lately, been meaning / to let you in on some feelings / here i am, do you see them? / shine that light on, right on / there’s a light on, right on / a safe place to admit . . .
that i am not right / i don’t know what it is, i’m just not right / i need someone to untangle a couple wires inside / if we’re honest, i am not quite right
shine your light onto my weaknesses.
something cut me / there’s bitterness in my bloodstream / been holding on to dead things / shine that light on, right on […]
so heaven help me / meet me as fast as you can / of the corner / of the state and the maze in my head.
Avalanche – Sons of the Sea
There are many things that bring experiences full circle—the fact that in writing an e-mail to Jay, who encouraged me to engage in the soundtrack project, I was shaken by Avalanche (oh, literality…), was that full circle experience. This happened a couple months ago, however, it never really left my head. In a way that needs little explanation, I’m closing off December of this hell of a year with Avalanche.
I saw none of it coming—most of it is just debris that I want to leave behind, but memories that will never leave. An “avalanche in the blink of a year”.
avalanche / in the blink of a year / tidal wave of debris / unrelenting and free / on my heels and i fear / time, like an arrow in my chest / sent across salty air / as a child i didn’t care / now i bleed like the rest.
but there’s art / in that wave of debris / most eyes will see a mess / but good things coalesce / when yeasayers can see
so i’ll stand / face that liquefied hill / what i fear now the most / is the spectre, the ghost / of my past it hurts still
avalanche / an emergency / hence the chance to emerge / i’m a seed on the verge / of becoming a tree
And that . . . was 2013.
From the resolution to the avalanche . . .
It’s good to be alive.
The original post in this series can be found here—the recap of that discussion can be found here. Previous tracks: The Resolution – Jack’s Mannequin, Even if it Kills Me – Motion City Soundtrack, Feeling Good – Muse (cover), Typical – MUTEMATH, Workin’ it Out – Hilary Duff, The Year of Discovery – Tess Dunn, Caves – Jack’s Mannequin
To recap: I published the first (and most recent) post in this series the day before I turned twenty two. Naively, of course, I thought the chaos was over: by 4.5 months into 2013, I’d been assessed for ADHD and a learning disability and given some non-specific diagnoses, and had been digging through medical chaos with an unisolated cause, which resulted in a blood transfusion culminating two weeks to the day i turned twenty two. I had to drop my Spring course, but otherwise bounced back quickly—this is where we continue.
Twenty Two – Millencolin
Given the circumstances surrounding my twenty-second birthday, uncovering the Millencolin song Twenty Two was a bit unnerving—but chillingly fitting:
i’m one year older now since the last time i saw you / in case you want to know, i’m about to say what i’m up to / first of all, i’m a sluggard, moving slow in a clumsy way / some peace of mind is what i want, but that will be the day. / i’ve been going without fault for so long, and this must end / running around in circles, i’ve been so far from myself / searching for the energy and the time to make a change / to make a change in my life instead of watching it pass by: do something now while i’m alive.
If we take a step backwards to January, the theme was Make Yourself, based on the Incubus lyric from the song of the same title. Twenty Two became a huge response to attempting to get back to that, helping me identify where I was really at: “i’m a sluggard, moving slow in a clumsy way” grabbed me as a response to the last week in April/early May, when I could barely get out of bed, where simply moving made my head pound and I could hear my heart beating in my ears. “I’ve been going without fault for so long, and this must end”, was not necessarily about blaming myself for what was going on, but admitting something was definitely wrong with my body—and had been for months. “Searching for the energy” is of course self evident, and the rest about returning to life—but having the desire to actually process what had just happened. Since then, a lot of my twenty-second year has been very much about being “so far from myself” because of, for months at a time, being literally unable to change my own circumstances—which is exemplified here:
twenty two, don’t know what i’m supposed to do / or how to be to get some more out of me—i’m twenty two, so far away from all my dreams / i’m twenty two, feeling blue. // i try to activate myself the best i can […]
afraid that i will be weak forever, i can’t stay in this shape any longer, my life’s just another cliche.
Diane, The Skyscraper – Jack’s Mannequin
can you tell me how this story ends? […] but i don’t have the energy, so she plugs my machines back in. / and the late night tv talks to me about God, but God why can’t i sleep? as she plugs my machines back in–
i’d be lying if i said this was my plan […] see i’m trying, but i just don’t understand why i can’t predict the weather past the storm
On the same day as I was supposed to have been on a plane to San Francisco to spend a week with my aunt and cousin exploring the city and hanging out with one of my favourite people ever, I was in the emergency room with a heart rate of 165. How I was feeling is pretty indescribable: the day before I was supposed to fly out, I briefly spoke to a WestJet representative allowing my mom to cancel my flights—i was feeling okay but I knew I was bleeding way too damn much. The icing on the cake was that despite the fact that I had 8+ vials of blood drawn on Thursday with a great hemoglobin, by Saturday prior to receiving a few bags of IV fluids, my levels were down to the high 70s—the week I was supposed to be in sunny California, I was instead in the ER on four occasions (visit 1: fluids, visit 2: monitoring and scheduling a transfusion for the next day, visit 3: transfusion, visit 4: night of the transfusion when I had another bad bleed but left the ER without treatment) and then enduring a D&C in my gynaecologist’s office and being forced to start hormone pills because I had no other option despite having a potential contraindication.
Of all the shit that has happened this year, the crushing feeling of having a trip I’d looked forward to for years ripped out of my hands is the piece I haven’t gotten over—and there was no way I could have predicted the intensification of the storm to come.
Weightless – All Time Low
In June, I dug Weightless from the depths of the iPod shortly after not going to California; instead of in the sun, I’d spent the same weekend in and out of gurneys in the ER and the week recovering from minor surgery and having significant doses of hormone medications dumped into my blood. The optimism of the song was catching–buying in to the and somehow I made myself believe things were better—for good. There are few things better than having two additional units of someone else’s blood put into your body to make you thankful, regardless of circumstance, regardless of everything.
manage me, i’m a mess / turn a page, i’m a book, half unread. […] i wanna feel weightless, and that should be enough. but i’m stuck in this fucking rut, waiting on a second hand pick-me-up, and i’m over getting older. […]
maybe it’s not my weekend, but it’s gonna be my year / and i’m so sick of watching while the minutes pass as i go nowhere / and this is my reaction to everything i fear / cause i’ve been going crazy, i don’t wanna waste another minute here
[…] i wanna feel reckless, wanna live it up just because. / i wanna feel weightless, ‘cause that would be enough.and i’ve been going crazy, i’m stuck in here…
I was still emotionally a mess: I was upset and angry (and, I still am). All of the words above could not have been truer: I wasn’t feeling free, I was going crazy, I wasn’t getting anywhere, I was sick of standing still, and just being able to be healthy? That would have been the weightlessness: enough. And of course, if I weren’t growing I wouldn’t be alive, but I certainly was “over getting older” considering that the fibroids discovered to be causing the problems are typically attributed to age—hormone mediated, but in my case, very genetically influenced in their onset.
The most interesting, of course, is “i’m stuck in this fucking rut, waiting on a second hand pick-me-up”. The weird thing is that I always would say after transfusions “yeah, I’ve got [x] units of new blood”—it’s only new to me: in reality, it is the greatest “second hand pick-me-up” ever. The recovery comes with a lot of mental battles—especially in the limbo of not knowing when [or if] a more permanent-state of better is going to happen. Regardless, i left June with optimism, but even now: weightlessness, yeah, that would be enough.
Watch the Sky – Something Corporate
Depending on what circle you’re in, it’s either a little-known or well-known fact that guilt can be a big theme in living with chronic disease. In July, I started having problems again and while I was attempting to deal with it on my own by seeing my doctor, my parents came in from the cabin after just starting their holidays—two days later, I was in the ER again with a heart rate of 155 and needing another blood transfusion after a 20 point drop in hemoglobin in two days. Though, the next song actually interjects into the actual hospital portion of the story, two days out of the ER, I had this massive emotional breakdown (finally?), and this song basically just made all the shit feel not normal but at least okay to be dealing with—and that there is good ahead.
i’m lost at sea / the radio is jamming, but they won’t find me / i swear it’s for the best, and then your frequency / is pulling me in closer until i’m home. / and i’ve been up for days, i finally lost my mind and then i lost my way / i’m blistered but i’m better, and i’m home.
i will crawl / there’s things that aren’t worth giving up, i know / but i won’t let this get me: i will fight. / you live the life you’re given with the storms outside / some days all i do is watch the sky.
[…] this guilt feels so familiar, and i’m home.
i think i could use a little break—but today was a good day. / its a deep sea in which i’m floating / still i seem to think that i must crawl.
There is just so much in this song that nails it, however, the fact that unknowing of what would come next I wrote the words I will fight on my arm the night before I ended up in the ER—those words were with me through my sixth and seventh units of blood, and the days following: so was the guilt. Fortunately, the desire to keep fighting lasted longer.
I Swear This Place is Haunted – A Skylit Drive
is there something beyond science going on here? / in the dead of fear, fear / rise up willingly and confront us / this is the last winter: part of a change for better.
i’m moving forward now, the thought of a ghost brought me to life / i’m moving forward now / turn all of this white, the creature at night / you said it would never find out where i rest my head at night.
let us be the ones who block out the sunlight / light projects through myself
what have i done to deserve this? […] / build it up, break it down, we built this: it’s ours.
I seem to have a song of choice that gets put on repeat during ER visits: this was July’s. However, five months later, I used a lyric from this song as my mirror mantra this past week. This song not only moved through the ten hours in the ER with me, but also spoke to finally being told the following week that my ultrasound had revealed a fibroid as the probable source of my bleeding and, consequentially, the cause of my “chronic anemia”—I had anticipated it, but your doctors can’t treat what they don’t know: I was “ready to go to war on this shit”. The song also really spoke to me of the psychological aftermath: you said it would never find out where i rest my head at night is rather reminiscent of the lines from The Resolution, “i can hear the sound of your voice still ringing in my ears / i’m going underground, but you’ll find me anywhere i fear”: it’s about though the battle is done, it stays with you. Even when I was asleep, sick or in an intermittent state of healthiness, sleep was only an escape, but laying awake in the dark can be the hardest part of a day.
Like Feelin’ Good, I played this song after I released myself from my former gynaecologist’s care—moving forward, the thought of a ghost brought me to life. It was at that moment, four months after this specific ER visit, that I realized I was that ghost. I was not myself; the light was around me, but not in me. A more tumultuous process than anticipated, recovery has been about recapturing that light so that not only can others see it… so that I can feel it.
Part three of this post will be up in the coming day or two—stay tuned!