my chronic disease secret

Most of the time, I try to be of the voice that life with chronic disease can still be awesome.

But that doesn’t mean chronic disease doesn’t suck.

A couple years ago, my friend Chris launched My Diabetes Secret. An innocent question from him lead to a discussion, and then… to this:

My Chronic Disease Secret.

“A safe place to share your chronic disease secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.”

I like this a lot.

Huge props to Chris for investing his time in setting up these projects.

Share your story. Even if nobody knows it’s yours.
Or if that’s too hard, share. Just read, even.
And keep going. If you need them, there are resources, people, who can help—even if you just want to type.

I hope you’ll check it out.

stories from the past: faith, mental health, hope and being alive | #BellLetsTalk

when i said good morning, i was lying
i was truly thinking of how i might quit waking up
He pointed out how selfish it would be to kill myself
so i keep waking up.

[…] You grip my wrists,
i let go. 

—much like falling, flyleaf 

This past week, a few things have happened. 

1) Today is Bell Let’s Talk Day  to bring stories of mental health to the forefront and decrease stigma around mental health issues until we end them. This post is being triggered by #BellLetsTalk, but it’s a story I would have told this week anyways.
2) I hung out with Richard, a conversation which brought forth a lot of reflections on my own faith story.
3) I read The Reason: How I Discovered a Life Worth Living by Lacey Sturm. It made me think, a lot, and reflect on a lot of my own testimony and beliefs.
4) The previous two points, and other conversations throughout the week, prompted me to start taking a look at the Bible again—something I have not done in over a year.

What do these things have in common? Everything.

The summer of ’05 was probably the worst time of my life. For a host of reasons, I was constantly in a state of emotional shakiness—and then, depression and numbness. I was fourteen. I spent a week at a Bible camp after declaring myself an atheist a few months earlier. I resented slowing down each day during cabin time/bible exploration. I sang during worship each night—sometimes—but mostly just enjoyed the music while blocking the words out. I didn’t need God, because God did not exist to me. I struggled the rest of the summer—I contemplated ending my life, but I wasn’t yet at the dangerous step of contemplating how.

A month later, I couldn’t run anymore. I still didn’t even really believe in God, yet I threw myself at Him saying “If You’re real, please show me what to do.”

Around 10:30 PM on September 7th, 2005, I changed. I changed in the fact that I no longer wanted to stop being here.

seven years.

Still doubting—He made me believe.

Yet He loves me despite it all.  He loves me enough that He opened my heart that September day in 2005 by telling me that I didn’t have to end my story then and there.  That He alone could get me through everything I was facing–lighten my darkness, take the depression, and heal my grandma of the cancer that invaded her for a few more years.

I’m living a life that six years ago I’d have never dreamed.  I’ve had amazing ups, and I’ve had huge downs.  I’ve learned, I’ve grown, I’ve danced, I’ve cried.  I’ve reached my arms to the sky in worship and fallen to my knees in desperation.

I’ve created new chapters of the same story that God is writing.

I am ALIVE.

six years.

Did I have clinical depression? At that point, I don’t think so.

Would I have gotten to that point? I don’t doubt it.

Mental health issues need to be treated in partnership with someone who is adequately trained to address them. Medication is not the only solution: but not talking about what you are facing is never a solution. I dodged a bullet: just because I began to believe Jesus, believe in His healing, though, does not at all mean that I should have continued without a support system around me.

Even though I didn’t know it then, I have ADHD: 20 to 30% of people with ADHD will experience depression or anxiety alongside their attention problems. After starting ADHD medication, my psychiatrist noted that I seemed to be less anxious—I didn’t think I was anxious (I’ve experienced that alongside a very mild case of disordered eating when I was sixteen, and this was not at all like that), but she continued on to note that it was likely the ADHD symptoms creating the now less-present anxiety. I do not at all doubt, or disagree with, this.

For me, these things all go hand in hand. My life, my faith, my mental health—my story. The person I am today is different because of all of the above—yet, I would not want to be the person who I’d be without facing my past.

 

Rock version or acoustic, the words in the two versions of Red Sam below are pretty much the same—the message definitely is. My story is a lot like Lacey Sturm’s. I have a post coming up on worship (soon!) and these both exemplify so, so strongly the way I respond during worship

I’m still alive. The world needs YOU to continue your story, too.

Stay. Be here. There is HOPE in finding help. (usa)

here i stand
empty hands
wishing my wrists were bleeding
to stop the pain from the beatings
there You stood holding me
waiting for me to notice You

but who are You?

You are the Truth
outscreaming these lies.
You are the Truth
saving my life.

the warmth of Your embrace
warms my frostbitten spirit
You speak the Truth and i hear it
the words are
“i love You,
and i have to believe in You.”

my hands are open, 
and You are filling them
hands in the air
in the air, in the air, in the air.
and i worship
and i worship
and i worship
(Jesus)

red sam, flyleaf.

2014 soundtrack: from there to here.

Through a series of songs, 2013 could briefly be described as “from the resolution to the avalanche”. It’s both accurate and backwards to how the year actually played out—here’s to chaos. Last year, I began the journey of compiling a “life soundtrack”—a project sparked by my friend Jay that aims to capture core moments over the course of a year through the resonance of music. 2013 captured many moments I’d just as soon forget: they are as much a part of me as any other, but I cannot listen to several songs on that soundtrack without intensely flashing back to places I was in that were not what I had hoped.
And yet, I think that is the aim of this kind of project, really. To not lose those moments that help shape where a journey began and remind you of where it progressed to—positive or negative, this is my life. And try as I might I can’t—and shouldn’t—forget those stories.

2014, however, rose up out of “the resolution to the avalanche”—New Horizons is the title of the first track on 2014’s list, and, the title is strangely reminiscent of a phoenix emerging out of the flames. I wrote in December that the themes of the final set of songs in last year’s soundtrack shifted more into a theme of recovery—if this is true, then 2014 became a theme of revival, knit in with recovery to an extent, but also a completely separate entity.

 
(The real track 11 is Without It by Mutemath, unavailable on Spotify) 

New Horizons – Flyleaf. January 2014.

so you’re tired, but you’re alive
so open up your eyes,
and you can get your sleep when you are dead
kill the clock inside your head

bring your normalcy to the edge and watch it drown
in new horizons.

“So you’re tired but you’re alive” was much a reflection to the shell of a life I spent much of 2013 living in; “you can get your sleep when you are dead” was the huge, forceful attempt to transition out of that. It was the attempt to remember that I did not have to continue living in my past, that it was done, and if it wasn’t, I had the right people with me. Despite this, I spent a lot of time reminding myself this year that I am okay. That every weird thing that happened to my body was probably just that—a weird thing. That started as soon as that clock ticked over to January 1st. It becomes hard to separate the reflection of attempting to separate myself from the intensity of what I lived through in 2013 from what unfolded in 2013 itself.
The killing the clock thing was actually all too real to me—there was another song by Andrew McMahon (I Need You [feat. Tommy Lee]) that had the line “and this ticking clock isn’t for me”, and around this same time, I had to really grapple with discovering that yes, I’d just gone through a bunch of shit that could have killed me, except it didn’t. And because of that, it was evident that the self-percieved metaphorical time bomb over my head did not kill me, and nor did it have to in the revival.

you said i’d only have to wait until i died
new horizon
there is no such thing as time,
inside this moment, no sun rising
wait until i fly…

when the times keep going wrong and we go right…

Shit happened, I lived, and I don’t believe in coincidence. That means something.

 

Circa ’46 – The Rocket Summer. January 2014.

This one actually has to be started a bit reversed. Monday, January 27th, I used this line from Circa ’46 as my mirror mantra—I had recently begun round three of anatomy, and in the process of trying to regain control of my life, this was especially resonant:

life will write the words, you choose your own melody 

On January 28th [after a discussion about hockey the day prior, I might add], my grandpa passed away—subtle signs preceded, perhaps, but, nothing that would have foreshadowed the quickness of the actual event to many of us. I was in the gym with my friend Sam when I got a call from my mom to come to her office, where she told me.

i started moving so i could sleep at night
i figured exhaustion would shut my eyes. 

The first line from the track quoted above, though, was really the one I clung to through this—once again, I don’t believe in coincidence, and that line enough was a very quick reminder of the less-tangible things I learned from my grandpa—and, of course, that I would love little more than to be a likeness to him when I’m old :). This song was not one that summated the entire experience [see next track] but one that I kept coming back to as one that more truly reflected my reflections on the experience—the good of being lucky enough to have him in my life for twenty-two-and-a-half years, and spending a lot of time with him, learning how he chose to create his own story in the midst of his circumstances for nearly seventy-nine years.

i said, life will write the words, you choose your own melody
yes, life has given me hurt, but i choose my own melody

and sometimes it’s that sad, sad song i’m singing all the day long
i’m just trying to find the right notes…


Light – The Rocket Summer. January / February 2014.

all i needed was a light in the darkest place
i’ve ever been in all my life as i try to find my way
in the changing seasons of my life, and my eyes don’t see
the things i love have run their course
are they done? are they just beginning? 

I remember putting this song on while driving to my grandparents’ house from the hospital. And on the way home with my dad that night. And on the way to the funeral home a week or so later.

i’m old enough to know time doesn’t move slow

I am, and have been for the last several years, at somewhat of a standstill with both any semblance of a relationship or real understanding of where I am at with God. Yet, I very intensely felt the resonance of this song and the surrender involved in it, and attempting to act on that surrender to make sense of . . . everything.

and i’m young enough to know
that i can’t ever be old not to trust You

higher and higher, i wanna go there with You
some say Your fire, Your fire is through
and i don’t wanna think that way… 
 

[Note the potential for duality there of simply un-capitalizing some God-representing Ys and simply recognizing that a person who is “gone” is really not gone so long as we remember what we’ve learned.]

I still feel like I am at much of a standstill in that regard above, and it’s also one that I am not sure I want to rectify, or when. I still don’t understand religion, I know I want a relationship and I do not want religion, I know I believe in both Jesus and God, and the connection but possibly not the sameness. I remember opening my arms several times and wanting to feel different while embracing these words, and yet, that block in me is still there, and I think it’s self made. [And no, I don’t believe in Satan or religion or biblical infallibility, and nor do I think I’m wrong in what I believe or how I choose to worship, and nor do I think God doesn’t think I’m not trying hard enough, so this is a reflective tangent but I don’t want to read any of that in the comments…].

i am Yours, do what You wish.
i am Yours, i am Yours, and i know this
whatever happens next, is in Your hands 

Yet, I still believe this as strongly as anything:

everyday there is a choice
and through the joy, through the pain
i will rejoice
.

And in the struggle, I chose this as much as I could without rejecting the reality of what was going on around me.

 

Guts – All Time Low. February 2014.

If a single song had to summate 2014, I think this would be it.

shooting for the stars
desperately reaching for something in the dark
pictures of memories buried in my heart
lie awake and dream of the endless possibilities
catch my breath and go for it
take apart everything that’s holding me down
make a point to pick a new direction,
to make a new connection.

Anatomy tried repeatedly to suck the life out of me. It felt like all of these things: unattainable; scary; determination; adaptation. My new connection, of course, was that with the associate dean of kinesiology who worked relentlessly with me to figure out a way to make this thing work. This also took the term self advocacy for me to a whole new level. I am, to an extent, used to advocating in terms of my health, but when it came down to having to work with explaining my learning issues to people, this was a big challenge.

is this what it feels like finding out
that i’ve got the guts to say anything?
feels like breaking out
when i can give up my reputation
finally i can see, honestly
i’ve got the guts to say anything.

bold enough to fall
flat on my face when i walk as they crawl

slowing down is just a waste of time to let go
tapping my fingers
to the rhythm of a metronome
counting opportunities.

take apart a gravity that’s holding me down
make a point to find a resolution
to be my own solution.

Through the whole process, though, I was freaking out that I was still not going to make it out: knowing that could have been the outcome even with all of the people helping me was beyond scary—because I needed my work to pay off not only for me, but because other people were giving so much to help me be successful. And on both sides there’s a kind of responsibility there.

if i’m gonna go down just let me go down
let me go down alone… 

Fear – Creed. March/April 2014

I think this song picks up, really, where Guts left off: working with and changing our own variables, and creating our own outcomes—regardless of what obstacles are in your path—for me, much of the time from January through April was focused on just making it through those last four months of my degree… to graduate. This was also a really intense period of self-acceptance surrounding my learning disability and ADHD diagnosis and reframing success and getting there—

the cradle of civilization sparks my fascination
truth ignites a generation to change what’s been programmed inside the mind […]

stay on top if they let you
‘cause the change is permanent.

The change this time was really that of mindset surrounding circumstance, not of circumstance or of mindset themselves: it was the combination of the two really gelling in the right environment, with the right people around—people who genuinely wanted to help me how they could to make it through the term—from anatomy, to the flexibility of my Health in Antiquity prof on a few occasions. All I really wanted was to get out of there, but get out of there as strong as I could. It was, however, knowing—or learning—that I was the one in control, and I can ask for help when I need it (“‘Cause I can see, honestly, that I’ve got the guts to say anything.”)

don’t you turn a blind eye: change what’s been programmed inside
staying silent is a crime

[…] change stops in your mind
leave the past behind, forget everything you know
make a change, let go

And that asking for help and redesigning my world to fit my circumstances… is totally okay.

Revival. Late April/May/June 2014.

Let’s get out of here
Walking outside, everything is feeling right […]Flashing by your brand new eyes it’s the first time
in so long, that you see, that you see you in the mirror. 

Six months after the completion of 2013, I finally regained some semblance of balance that I’d lost pretty much completely in the preceding year.  The day after my final exam of university (since I’d learned I’d passed anatomy), I got on a plane to San Francisco: a rectification for having had to cancel my trip to California in 2014 in exchange for hospitals, surgical procedures, and blood transfusions. And yet, I was still searching for clarity—trying to process what that year really taught me, since I cannot find reason for why it happened.

It’s been a bombs and guns and fire kind of season,
Oh, I need a reason for all of my bleeding tonight.
I’m gonna break it out, I’m gonna make a scene if I’m right
The electric light, we are tonight. 

We’re gonna make it.
I won’t forget this place 
No, I won’t forget you.
Let the revival rattle me
and open my eyes, and open my eyes
it’s so good.

Revival was much the theme of 2014—I will fully admit that I was stuck in processing 2013 until August 2014 (bleeding out and having my entire blood volume replaced by donors in the span of six months might do that to a person—I also found out in July that I have another fibroid and unless it starts trying to kill me again, we’re not change that). This was a piece of that process, knowing that I’d made it through the real shit—and I could make it through the rest—even if it was a process in itself; even if the revival rattles me and is an emotional process, it is still a revival.

 

After the Fire – Andrew McMahon. July/August 2014.

For the second half of the year, I have awakened to this song every single day: it is both triumphant and cognizant of struggle and chaos—and appreciative of the good things that can sometimes only be realized out of a clouded lens.

why dream? we’re breaking out of this machine
we’ll bathe the walls in gasoline and watch the fires go
we’ll burn this house, then raise the fence that keeps us in
the cabinets and the medicine, beds like boxcars in a row.

and when the wave comes sweeping,
the cold blood sleeping in your veins,
after the fire
the sun comes crashing through
a cloud so black and full of rain
after the fire 
i swear one day you would forget them locking us away
after the fire

Forgetting is a big part of it: not that I can forget the year that I left behind in numeric form, but more that I can for days at a time simply not think about it, not flash back to doctors offices and emergency rooms and IVs intensely. It took months to finally realize that no longer was I fighting my own body (well, or at least realize I was back into the capacity of not fighting my body AND the medical system to prevent death on a regular basis… my asthma didn’t get cured or anything).

locked in, the days will end as they begin […]

This line, and the first verse lines about fences and medicine, actually speaks to the daily theme of chronic disease—that it may affect many aspects, but not all, yet it is still present every morning and night… but unlike spending the previous year having too many waiting-game experiences edging closer to death than life, my daily reality is a coexistence—as in, I no longer feel threatened by my own body on a daily basis. Yet, the overarching theme of After the Fire, of course, is perspective.

we were dancing with the ashes falling
we were singing by the open flame
let it burn: tomorrow is another day.

I am blessed: Today, I get to try again tomorrow.


Burn Out Bright – Switchfoot. August/September 2014.

Driving through Minneapolis and the East Bay/central areas of California, I have clear memories of Burn Out Bright playing on my iPod while in Minneapolis, and going through my head driving with my friend Steve in Santa Cruz. Interestingly, once again, that the chronic disease journey above, the asthma and the blood transfusions, are the reason that I returned to the Bay Area twice in 2014—the second time, being for Medicine X at Stanford University—reminding me about the huge value that sharing our stories, sharing my own stories, has; reminding me of the people that I would not have ever encountered had I not been placed into this crazy story that’s unfolded in my 23 years that is my life.

All the while reminding me… that I am basically designed to be discontented—because I think once I’m content, I’ll stop growing.

does it have to start with a broken heart
broken dreams and bleeding parts?
we were young, the road was clear
young ambition, it disappears
i swore it would never come to this,
the average, the obvious
how i’m still discontented down here
i’m still discontented.

if we’ve only got one try,
if we’ve only got one life,
if time was never on our side
before i die, i wanna burn out bright.

a spark ignites, time and space
limping through this human race
you bite and claw your way back home,
but you’re running the wrong way.

the future is a question mark,
of kerosene, electric sparks,
well there’s still fire in you yet,
yeah there’s still fire in you.

[…] i can’t clean up the mess i’ve made […]

before i die, i wanna burn out bright

And yes, maybe the discontent leads me to do some minor risk-taking [nothing really too new in that department this year, though I still get in vehicles with people from the internet and share hotel rooms with fellow conference attendees I’ve never met :)], but I don’t know a better type of discontent than the kind that leads to connection.

Of course, as always looking back, I find some foreshadowing in this song (and also references to the past—“before I die, I wanna burn out bright” is a pretty good reference to leaving 2013 behind).

 

 Bruised, Jack’s Mannequin. Late August/September 2014

Of all the songs on my phone, this is the one that I have listened to on every single flight in the past two years.

I’ve got my things, I’m good to go,
You met me at the terminal,
Just one more plane ride and it’s done
[…]Sometimes perfection can be, it can be perfect hell,
Perfect…

This speaks so well to the end of adventure. Of going back home after spending 12 days living out of a hiking backpack, of 11 nights in hotel rooms and a night on an airplane. Perfection, well, what is it, really? Maybe for me it’s coming back down to discontent—returning home is bittersweet. There were good things on the horizon when I hit ground back at home after 12 days on the road, and of course, that desire for some sort of stability. Yet, the buzz of Minneapolis, then the chill of hanging out with Steve in California for a few days, winding down each night by myself in a hotel room, and then the constant stimulation that followed with Medicine-X at Stanford was the type of challenging discontent I’ve discovered I thrive on—challenging me to think bigger and explore wider. Among the most thought provoking aspects of the California part of this trip was just meeting so many people with their own battle scars and bruises, who are striving to create better things in their own worlds, and the lives of others.

I swear, I didn’t mean for it to feel like this, like every inch of me is bruised
Don’t fly fast, oh pilot can you help me, can you make this last?
This plane is all I’ve got, so keep it steady now,
‘Cause every inch you see is bruised.

I returned from MedX exhausted in the best way possible—in the span of 24 hours at the end of the trip, I went from the Wellness Room at MedX in deep reflection, to Google and Facebook, to find some sweet potato fries at the hotel, to catching a ride with Joe and Marie to SFO, nearly leaving my phone in SFO, getting three seats to myself and extra snacks from SFO to MSP, laying on the airport floor for two hours with a free Delta blanket and using the aforementioned hiking backpack as a pillow, and then finally falling asleep on my hour flight home. And, damn, I love that chaos.

I lace my Chucks, I walk the aisle
I take my pills,
the babies cry
All I hear is what’s playing through the inflight radio
Now every word of every song I ever heard
That made me wanna stay
Is what’s playing through the inflight radio

And I, 
And I am finally waking up.

 

Without It, Mutemath. October 2014.

A subject I haven’t written at all about is that I left my job—as of October 1st, 2014, I’ve been basically unemployed. It was an unfortunate circumstance, and leaving work itself was not the worst part: I also managed to lose multiple friends in the process. I completely understand the aspect of not knowing what to say, and I did no better trying to communicate through the circumstances. Three months later, I’ve basically shaken it off and am finally seeing new things on the horizon after three job interviews leading to no action, but the initial transition has been rather rough, even though the process of actually leaving went way more smoothly and amicably than it could have—because more than anything, I was from day one blessed by a team at work.

Here we are
Isn’t life bizarre?
It likes to take from us
and throw it out…
We’ll carry on
What’s done is done

Yeah, we’ll do without it somehow.

The world is gone
Don’t think about it […]They say the road is long,
Don’t think about it,
‘Cause life is short,
We’ll do without it.

We can move on from this
Don’t worry: the best we’ve known is yet to come
We can move on from here
Don’t worry: the worst won’t get the best of us.

I did nothing but my best, but I took responsibility for the circumstances that occurred—part of that responsibility was resigning. We all moved on: I just moved on in a different direction than I’d intended at that point in time.

This section of the song, though, once again reminds me of 2013:

Some memories are crippling:
Don’t let the disease bring us down.
There’s nothing else to know
Just let it go—
Yeah, we’ll do without it somehow. 

I contemplated resigning from my old job when I was sick last September (because yes, being sick definitely correlates with feeling guilty even though that is ridiculous). And now, I am healthy, graduated… and unemployed. Yeah, Fall is an accurate term for how that season went down. I’m rallying, but, there’s something about transitions all happening at once—the still-occuring recovery from the high of MedicineX, no longer being a student, and then, going from having multiple jobs as a student to having one very casual one doing respite a few hours a month.

Crazy. But obviously… a journey. 

(Note that while I listened to Hold Me Down by Incubus on the way to resign from my position on staff, and on the walk home, there was too much animosity within it to use it as a truly reflective piece—“The road is long, the trees are orange and brown, I’m not afraid to leave this goddamn town, I’ve had enough and God I won’t look back, I’ll walk awhile along the railroad track […] I want more than you can offer, I am off to anywhere but here, I keep walking so nobody can hold me down. […] I’ve had enough, it’s too much to live down […] but this place, you see, is trying to hold me down.” Much of it, I think, was trying to rationalize anything, in a way that wasn’t at all rational…)

 

Bridges, Farewell Fighter. October/November 2014

I’ve been continually looking for jobs since graduating (something my former boss, supervisors and coworkers were all aware off and encouraging me towards), so while I let up a little in early October to give myself some recovery time (no matter how good making the best of a tough scene is… it’s still not a good time to make decisions), I got right back on the ball within a few days.

Because no matter what they are, the experiences behind me are bridges to a better path—“there’s no map for this thing” (—Andrew McMahon), but all maps must have been made on trial and error at some point. Because I am still relentlessly optimistic, despite everything. Yet I cannot make sense of anything as of yet.

These red and blue lens glasses won’t assist me any more
Cause all of my third-dimension friends have all ascended to the fourth
And i have been hard at work, believe me,
Searching high and low for clarity
But oh my God, my eyes are so sore
:
I don’t wanna use ‘em anymore.

So is it worth the weight
I’m bearing that’s about to make my back break?
I’m ready to burn this bridge for a better way
And oh, hallelujah, let me go.
I guess I’m only human after all. 

As my friend Dia said once… “I can’t look back every day or I’ll never move forward.” So, I am once again choosing to move forward—and accept my humanity.

I used to have a flag to defend,
But someone just told me that conflict has come to an end
But there’s a new addition, a brand new mission
I’m just too self-absorbed to circumvent
“Well maybe you should just be more like them,”
Well, I guess I just wasn’t cut out to fit in.

[…]

Some may think the worst is worth the best of memories
And some fine day, the chance is high they won’t remember me.
But I’ll get mine:
My heart, my head, my hands will all be fine.
When will I know to draw the line? 
Guess I need a bit more time,
So I can lock it up safe inside my mind.

So if it’s worth the wait,
I’ll feel a little better when the storm breaks
There’s so much left to say.

Oh, hallelujah, let me go:
I guess we’re only human after all. 

There’s so much left to say: I can settle to be discontent—but I can’t just settle. And if I’m not cut out to fit in, I can deal with that—because that means I’m made to create my space not just fill one. The uncertainty will at some point lift, I’ve most importantly learned to forgive myself, and my heart, my head, my hands will all be fine . . . because I can accept my inability to completely control my circumstance—and I can accept I’m human.

 

i believe, Christina Perri. December 2014.

Thanks to To Write Love On Her Arms, I finally listened to/came across this song a few weeks ago (since I struggled to get over the “Hold on, I am still alive.” shirt, but struggled in a good way). And then I listened to it on repeat (because, “holy shit, are you in my head?” kind of happened for parts of it).

I don’t think much commentary is needed here. Just that sometimes it is important to become lower case.

i believe if i knew where i was going, i’d lose my way.
i believe that the words that he told you are not your grave.
i know that we are not the weight of all our memories
i believe in the things that i am afraid to say.

hold on, hold on.

i believe in the lost possibilities you can’t see
and i believe that the dark reminds us where light can be
[…]

‘cause i have been where you are before
and i have felt the pain of losing who you are
and i have died so many times
but i am still alive.

i believe that tomorrow is stronger than yesterday
and i believe that your head is the only thing in your way
i wish that you could see your scars turn into beauty
i believe that today it’s okay to be not okay.

hold on, hold on.

this is not the end of me
this is the beginning.
hold on, this is not the end of me
this is the beginning.
i am still alive.
this is the beginning. 

Believe. And move forward.
Again.

believe.
we are alive.

Full circle:

“So you’re tired, but you’re alive, so open up your eyes and you can get your sleep when you are dead, kill the clock inside your head.” —New Horizons, Flyleaf

“hold on, this is not the end of me, this is the beginning: i am still alive.” —i believe, Christina Perri

Own it—wherever we’re at, no matter the chaos… we are so fucking alive.

 

the aftermath: B[e] positive. give HOPE.

One year ago today, I was in the emergency room receiving a blood transfusion.

A year ago Tuesday, I received my final blood transfusion of 2013, following surgery that [finally] removed the uterine fibroid that had repeatedly caused my hemoglobin [and blood volume] to drop, leading to the 10 units of red blood cells I received in 2013.

This coming Tuesday will be 365 days after I went from crashing in the emergency room, being taken to resuscitation for hypovolemic shock and rapidly being infused with IV fluids, and then into surgery. And it’s a day I am trying to reclaim as my own. Nearly to the hour of when I was taken to resuscitation, I will be once again on the donor end of the process for the second time in my life. And now I don’t just want, but need, to be on that other side again. To bring that hope full circle. To reconceptualize that surreal feeling of knowing the only reason you might live, is because someone who has no idea who you are or what potential there is for your life if you life—when you live—wants to be the difference between hope and the alternative. I need that day to no longer be about me, no longer to be about that I lived, but be reminded B-postive is far more than my blood type, it’s my nature—and because of these things, someone else will experience hope.

As difficult, as messed up as last April through September were, in many ways, it was nearly as hard as the after has been. And once I make that first blood donation, take that first step, I move forward into further reclaiming my life. The first year is a year of waiting—the aftermath is always about waiting. This time, there is less for me to wait for in anticipation. Unlike 2013, a year at risk of abandoning every plan because maybe my body had other ideas for which there was no plan, I was able to embrace 2014. I actually started embracing 2014 in December, when I finally started getting my head together following the aftermath of my five months of hell—which took two months in itself. I think this is probably a process that, though extremely variable in speed, is probably true for most blood recipients: whether you are receiving blood because of “pure” anemia, or cancer, or following a traumatic injury, or any other number of conditions, the aftermath is similar—we remain in limbo, waiting for a potential sign of recurrence, or adjusting to life as it continues on a totally different path than anticipated, yet we owe the fact that we are alive to a person or people we can usually not thank ourselves.

My limbo, is not knowing what’s going on inside my body: an impossibility without medical imaging. I had a follow-up pelvic ultrasound done in early July. I spent a bit over a week, part curious and part agonizing, about the results. I phoned Alaa’s office—Alaa, who had taken me as a patient when my own primary care doctor refused to refer me—and said it was okay for his staff to leave the results on my voicemail. They actually did. July 14: “Dr. Awadalla said it was an excellent report, only a tiny 1.2 centimetre fibroid noted—otherwise a very good report.” That small fibroid, dependent on its location, could be where this story started: or, it could stay that size for years, and remain totally innocent. I am now simply trying not to think about it and live my life—even more true now after phoning last week to figure out the plan. As I anticipated, I simply continue what I am doing. I am not going to get to come off of oral hormone treatment (the inappropriately titled, in my case, birth control pills) anytime soon—I could be on these pills at least another 20 years if nothing changes, and as backward as it seems, clearly I hope this is the case. Yet, if anything does change, I go in to see him right away (and I’m sure they will get me in right away—they called me twice last week to tell me what the plan was, and the second time was at 7:12 PM) and we discuss probably putting a hormone intrauterine device in (specifically, the Jaydess IUD) to, I assume, better target the hormones. So, some of the lingering anxiety has been eased, because I know that getting taken care of isn’t just a front anymore—I know Alaa cares, like all doctors should. The psychological aspects of much of my experience in 2013 is far more of a burden than the physical aspects are: doing what I can, having a team that engages with me as they can to address me as a whole person, is what makes the difference between using the (sometimes hidden) gifts contained in my transfusions, my team, my experiences… and wasting them.

And in this, also, is my hope. The hope that is only alive in me, because I made it through 2013, because of people. 

If you are an eligible blood donor, please consider donating blood with me on Tuesday, like my friend Heather (who is not even in the same country as I am, so no excuses :]), or any day soon. If you are not an eligible donor, consider volunteering at a nearby blood donor clinic for a few hours: you can still make a donor’s day by being that person to hold their hand through the needle insertion, or being the awesome person hanging out with the juice and cookies afterwards, or providing a financial donation to support the work that organizations like Canadian Blood Services, Hema-Quebec, and the American Red Cross do to help people… like me.

I’ll even buy you a cupcake next time I see you.

Since there are few other ways I can show my appreciation of your gift to others—because that gift is far beyond time or blood or money–

It’s hope.

diagnosis: it’s not a label, it’s a bridge

Seven-plus months ago, I started what was an arduous journey. I’d known in myself that something was off for a long time with how I performed educationally. Until university, I didn’t have any exceptional struggles [unless we count that I could never master the multiplication tables, or that even being tutored through grade 9 math I still came out of there with a C]. Then university came. I’m sure I’ve probably dropped nearly as many classes as I’ve taken–I couldn’t get through the readings for the most part [and, let’s be honest, that C in intro psych could have probably been at least a B had I read any of the textbook!]. When anatomy came, I shrugged off the first F–especially after I found out how many people in med school fail anatomy. The second one? I’d put so many hours in. I’d spent countless hours with a tutor, I’d made a stack of flash cards, I’d coloured the colouring book, I wasn’t leaving labs early. I’d failed or near-failed tons of tests, yet by balancing them with papers, I was mostly rolling out C’s and B’s, with a few A’s thrown in in the classes that really gelled with my learning style, my interests, my quirks, and my academic gifts.

When I went through the educational assessment process last Winter, of course there’s all that associated doubt: I’ve gotten this far in school, why am I bothering with this now? They probably won’t even find anything helpful. But, the what-if’s kept me there.  While they were unable to diagnose or exclude ADHD in me, they did nail down a bunch of things: a bunch of things that had lead me to question my abilities at just about everything.

For me, a lot of it lies in my processing speed and working memory. I can’t say I believe in “normal” too much, but in psychology, everything is about deviations from the norm. My processing speed is definitely one of those–it’s only higher than 2% of females in my age group. It also means I’m probably more inattentive and distractible. My working memory deficits makes it more difficult for me to manipulate information in my head. And you know what? That’s nothing that I didn’t already know. It just gave me more knowledge about myself and how to work with what I have.

In the last several years though, I’ve worked with a lot of kids. I’ve worked with a lot of kids whose parents knew something was different and acted on it to help their kids be the best they can be. And I’ve known some kids whose parents chose the other route.  Are their children struggling more than they need to? Are they being denied access to proper supports, both socially and educationally? Is the fear of a diagnosis hindering the child when having more knowledge could be helping?

Diagnosis: it’s not a label, it’s a bridge. Learning about how I learn, about how I have what might be called a learning disability? It’s made all of my struggles make so much more sense. It didn’t start anything new, it just underscored what we know I’ve always excelled in or struggled with. It’s help me maximize on the things I’m good at. It let me know that I’ve struggled for legitimate reasons with a lot of things . . . and I’m not dumb and it’s not my fault.

I have new plans. I have support at school. I have resources that can help me with my outside-of-school life–because that requires a lot of organization that I don’t rock with, too. I have new determination that I can do this.

But I can only imagine how much more settled I would be, how much more successful I’d have been at certain things, if I’d had this knowledge earlier.

My perspective, and this goes especially to parents: if you suspect you or your child may be experiencing specific struggles involving learning, attention, development or socialization. . . do something. Diagnosis of a learning disability, ADHD or a developmental problem is NOT a bad thing. It doesn’t change who you are, it doesn’t change who your child is. It just helps in acquiring the right resources to maximize success, not only academically, but in creating friendships, cultivating creativity, and reducing stress or anxiety.

It doesn’t define me–it helps explain me.