The original post in this series can be found here—the recap of that discussion can be found herePrevious 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!

well, i started this story in the middle of the page . . .

sugarbuzz, marvelous 3

The day before my birthday, I shared the first four months of the 2013 soundtrack—an undertaking you can read more about the origins of in the original post. On the eve of twenty-two, little did I know how much differently I would perceive not only the year, but the soundtrack that had been already created as 2013 closed off. The dawn of a new year is the subject of an upcoming post, so while you can read the original responses in the post linked above, I am starting the journey again from scratch—same songs, new songs, fresh slate as the story continued taking on life.

The Resolution, Jack’s Mannequin.

This song has woken me up nearly every day for the past year. Originally a call to self-change, intentionality and hope, as the year progressed it became more of an anthem as Andrew McMahon from Jack’s Mannequin had perhaps intended it—an anthem of survival; and an ironic foreshadowing.

there’s a lot that i don’t know, there’s a lot that i’m still learning / when i think i’m letting go i find my body it’s still burning / and you hold me down, and you got me living in the past / somebody pick me up: somebody clear the wreckage from the blast.

Line two: “when i think i’m letting go, i find my body it’s still burning”. These were among the last words moving through my head as I was medicinally lulled to “sleep” with two IVs in my arm and a mask suffocating me, mere hours after being pulled off the ER bathroom floor and into resuscitation. These thoughts are the ones that reverberate in my mind: the survival is what has me preoccupied with rewinding these moments.

i’m alive, but i don’t need a witness to know that i survive / i’m not looking for forgiveness—i just need light, i need light in the dark as i search for the resolution.

There are very few songs that the next piece hits me as hard as the first: The Resolution is among that rarity. I’m not looking for forgiveness. As I’ve written about, guilt is not uncommon being sick. It’s not just recovering and getting back to life physically. It’s realizing that despite having no control, the things that happen to us as individuals affect many people around us. Figuring out how to shed that guilt—or decrease it—is huge.

I still need that light: I’ve found the physical resolution, but the emotional one is a harder obstacle to climb over.

and the bars are finally closed so i try living in the moment / till the moment it just froze and i felt sick and so alone: / 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.

This—this is the aftermath. No longer being able to find distraction encompassing enough to escape the reality constantly following me—unlike most situations, I simply can’t take a step back from my own body. Every quirk, oddity, and even normalcy after having this fairly sudden resolution to months of medical turbulence can be extremely confusing.

it’s a long way back from hell / some stories i will never tell / and i’m almost home.

This resolution: it’s not a goal, a wish, a hope. It is a process. I am living the resolution.

Even If It Kills Me – Motion City Soundtrack

Simply the title of this track is really reminiscent of the medical aspects of my year, but it made it to the soundtrack sometime in late January at about four AM being the only sober person at a party. It was also sometime in the span of time I was having the psychoeducational assessment done. There’s a lot of aspects I can’t really speak to, but so many pieces were just very, very relevant.

i’ve got a lot of things to do tonight / i’m so sick of making lists of things i’ll never finish […] / since early 1995 all my shit has been in boxes / but if i had a little more time to kill / i’d settle every little stupid thing, yeah you’d think that i would. / but i’m too tired to go to sleep tonight, and i’m too weak to follow dreams tonight: for the first time in a long time i can say that i wanna try to get better and overcome each moment in my own way.

That last line was a big one: overcoming moments in my own way. Which once again became a really important thing to underscore after my ADHD/LD diagnosis.

winter is a killer when the sun goes down / i’m really not as stubborn as i seem, said the knuckle to the concrete.

i’m not saying that i’m giving up, I’m just trying not to think as much as i used to: ‘cause never is a lonely little messed up word—maybe i’ll get it right some day. 

i so wanna get back on track, and i’ll do whatever it takes: even if it kills me. 

 Feeling Good – Muse (cover)

I can’t paint the original picture of this song choice any better than May’s post: “There was a span of time that I allowed certain people to control my thought process, and I expended far too much energy on this–I struggled to let go of something that I had created that had become not what I had visioned and out of my control, trying to help people change who did not want to change. As soon as I was forced to let go of it . . . my life, my thought process, improved further in so many ways. And for that, I am grateful. Each day is new–and that makes me feel good.”

The new moment that unfolded, however, was when I had my final meeting with my former gynaecologist, the man who “oversaw” my care through three blood transfusions. I truly believe tried his best, but thank God somebody else’s best was better. 

it’s a new dawn, its a new day, it’s a new life for me: and i’m feeling good.

Because there’s something really kickass about running down three flights of stairs and barely being able to get your earphones in quick enough to make the moment complete with the right song about moving forward.

when the day is done: and this old world is a new world and a bold world for me. stars when you shine, you know how i feel.

yeah, freedom is mine, and you know how i feel.

Typical – MUTEMATH

Even now, as soon as this song comes on, I am quickly transported back to March as I wrapped the learning assessment process and got ‘the verdict’. Rather than deviating from the social typical, it was really about moving out of my own variety of typical—and, as I said to the accessibility services assistant Monday, “working with [circumstance] instead of against [it].” If anything, I just wish I had the process completed sooner, because I think it would have changed a lot of outcomes—but, maybe then it wouldn’t have changed me in the right ways either.

come on can i dream for one day, there’s nothing that can’t be done / but how long should it take somebody before they can be someone? / ‘cause i know there’s got to be another level / somewhere closer to the other side / and i’m feeling like it’s now or never: can i break the spell of the typical?

because it’s dragging me down / i’d like to know about when—when does it all turn around?

Workin’ It Out – Hilary Duff

This one, the cause for a deviation from a five-year Hilary Duff hiatus, was really about persistence and finding answers to questions, and how much that process, which really was defining of my year, sucks—while the implied theme is relevant, the lyrical mediocrity is quite unfortunate.

some days it all makes sense to me / some days i just don’t wanna know why. / i’m not giving up, no. / gonna stand up and shout it: no way / i’m not slacking off, or backing out, or cracking up with doubt: i’m working it out. / sometimes, i’m just surrounded by friends—sometimes we’ve never met.

That last bit about friends I’ve never met? Those are among the most important people in my story this year. I am blessed by so many amazing people who I only know through this crazy thing called the internet—who were among the biggest sources of support through the craziness I have made my through this year.

The Year of Discovery – Tess Dunn

A very fun, poppy tune, this is extremely reminiscent of my year: figuring things out, working with little new but more being uncovered, and taking time to trust the process.

so we’re calling it the year of discovery / but i haven’t found a thing / but don’t you worry, ‘cause i’m not far behind. / i’m not trying to keep up with the times, i don’t really see the point / the new year’s ringing loud and clear…

i searched the whole world to find all the missing pieces of me / but they were already there, not put together properly / i gave my all up and i hoped for something more / and even though everything’s missing, i’ve never been happier before.

there’s always something missing, can’t seem to put the pieces where they belong / but now for once, i don’t feel incomplete / this is my year of discovery.

I can’t say much more to it: it’s about finding answers to unasked questions and ending up more complete because of it—“she had answers to all the wrong questions / it’s funny, these answers are all that i need.” (caldecott tunnel, something corporate).

Caves – Jack’s Mannequin

This song, seven months later, can still actually be really tough to listen to. Eight minutes of piano, melody, and words that fit the feelings of those moments almost perfectly. I spent an inordinate amount of consecutive hours listening to this track on repeat in the darkness of the back corner of the emergency room, achieving little sleep between the atmosphere, my nurses taking vitals and changing my IV bags between blood and fluids, and the constant need to go to the bathroom induced by the Lasix and dragging my IV pump alongside me. Once again: my circumstances and Andrew McMahon’s were very different—but they both came down to anemia leading to treatment, being reborn by donors and doctors. And, the music being what pulled us through…

i’m lost somewhere in between alive and living a dream / no peace, just clicking machines […] the walls caved in on me.

 and she stings my arm in the night, i lay still—still i’m ready to fight / have my lungs, but you can’t take my sight. / the walls caved in tonight. / and out here i watch the sun circle the earth: marrows collide in rebirth […] / the walls fell and there i lay saved.

the walls are caving in as far as i can see / doors got locked for sure / there’s no one here but me / beat my body like a rag doll […]

 The words are deeply resonant: the piano solo is what was most explanatory this chaos at the time. In finding the resolution, however?

 i fought a war to walk a gangplank into a life i left behind / windows leading to the past, think it’s time i broke some glass, get this history off my mind.

 More didn’t hit me until September:

everything’s a piece of everyone. as far as i can see—walls are caving in, doors got locked for sure, but i see these doors have keys.

The blood of the donors that saved my life on multiple occasions? The cells may die out in four months, but my body’s physiological response to it lasts far beyond: I doubt I’d be alive right now without the beautiful people that chose to donate blood, and I cannot convey my thankfulness enough. This song, unlocking those doors, and connection—they persist beyond the hell I spent more than eight months climbing out of: I’m still on that journey.

———- 

Removed track: Stronger – Kelly Clarkson.

———-

i’m alive, but i don’t need a witness, to know that i survive, i’m not looking for forgiveness—yeah, i just need light, i need light in the dark as i search for the resolution . . . 

To be continued.