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!