Schooling And Being Schooled By Chronic Illness: The Sometimes Glamorous Art Of Disclosing

In the same day, two seemly unrelated events occurred. 

The first was a student disclosing to me that they had been dealing with a serious illness.  I immediately felt for and empathized with this student.  I wanted to reach out and give the student a hug.  But I didn’t.  I listened.  And I did something that maybe I shouldn’t have done. 

I disclosed my illnesses.  I tend to do this when students disclose illness to me, because I want them to know that they are not alone, and that others have been successful despite seemingly great odds.  I don’t do it to steal their thunder, saying “Hey, I’m sick, too!”  I do it so they know that I really understand.

I really connect with these students.  This is confirmed for me every semester I teach, and makes me realize that wanting to work in higher education, specifically with chronically ill students is my calling.  It’s what I was meant to do.  

I’ve encountered very few people who have made my life easier, as far as being a graduate student with chronic illness is concerned.  But rather than be one of those people who is bitter and decides to make others’ lives miserable because theirs was made to be, I just don’t have that in me.  I’m not that kind of person. 

So I connect with the student on a personal level.  Because I understand them in ways that others just aren’t capable of because they haven’t experienced it themselves.

On top of that, I broke another rule.  Maybe a more important one this time.

I went on a first date and I disclosed my illnesses.  Maybe I was feeling ballsy because I had “outted” myself to the student a few hours earlier.  But it didn’t feel that way.  It felt like it was something I needed to do, so we could either get past it and move on, or stop right then and there. 

Because the reality is that chronic illness has impacted all facets of my life.  It’s the first thing that enters into the equation.  It has to. 

So maybe I made a mistake.  But my gut and my heart tell me that I didn’t.  They suggest to me that I did the right thing, in the right place, at the right time.  

This just proves to me that there is no book on disclosure.  Who you disclose to and when is ultimately your choice.  I have prided myself in the past about the “third date rule” on several occasions.  But now I’m not so sure.  If it makes sense to disclose, disclose. 

Maybe people have other views on this and think that I’m crazy for disclosing on a first date.  But honestly, what a relief it was.  We made it over that hump.  Doesn’t mean that it won’t come back to bite me in the ass, but right now things are holding steady. 

So, disclosure is a complicated animal.  I think we’ve all discovered that pretty early on in the chronic illness experience.  In some ways, disclosing forces us to live our everyday lives in full relief.  Every time that we admit to others that illness is happening to us, we have to live all that, that means for our lives; which I think we sometimes forget in the daily slogging along. 

Maybe it was easier for me to disclose in this situation because at the moment, I truly don’t look sick.  In some ways, that’s kind of tease because it puts people at ease.  But for me it has always been more about the “what if” th

When Illness Slaps You In The Face

When Brittney posted her theme for PFAM, my reaction was great topic, but it doesn’t really describe me right now. 

But oh how the mighty fall.  I was totally wrong.  Her theme fits my life perfectly right now.  Here’s why. 

I’d been feeling pretty good, despite having a busy travel schedule and some ups and downs. 

But then school started.  And the weather was cold and rainy. 

And the fatigue, the fatigue has come back full-force.

And it was Thursday afternoon last week.  I was exhausted.  I spent the afternoon on the couch.  But the biggest part of my week was still ahead.  I had to teach on Friday, three one-hour long classes, back-to-back.  

Last year I was on fellowship, which meant that I didn’t have to teach.  I got to cruise and do mostly what I wanted, while still receiving my stipend.  In theory, last year should have been uber productive.  But it wasn’t, for many reasons.  Mostly there was some serious family stuff that went on and then my breakup, which really brought life to a screeching halt for awhile. 

So I should have accomplished a lot last year, and I didn’t.   

And I honestly believe, and in fact now realize, how much teaching takes out of me.  It’s crazy because with attending the professor’s lecture (three hours a week), holding office hours (two hours a week), and my actual teaching time (three hours a week), that’s only eight hours a week that are completely spoken for. 

Then there’s my two hours a week of volunteering and my hour of kickboxing.

So that’s not really a lot of my time that is actually spoken for.  But then there’s teaching prep, which can take a while given the dinosaur of a copy machine that I have to deal with. 

I know that a lot of times I take on too much, and my days are filled with meetings and other commitments that come up throughout the year.  But I don’t feel overcommitted right now.  I just feel like I am not capable of handling what I’ve taken on, which right now, is at the bare minimum.    

In the past, I’ve been taking classes and teaching.  And with the way I feel lately, I honestly don’t know how I ever did it.  Maybe because I was already not feeling well, I pushed through, and didn’t pay attention to the fact that what I was doing was contributing to my un-wellness.  But this time, I went from feeling relatively well to feeling pretty awful. 

 

Ironically, illness’s way of slapping me in the face, of telling me to wake up and face reality, is by making want to sleep all the time.

I didn’t realize, or maybe I didn’t want to realize, that teaching is something that puts me more into illness mode than I was before. 

But it’s not as if I have a choice.  Right now, this is my livelihood. 

Clearly, I will have to find a balance so that I am able to get the things done that I need to accomplish. 

Leaving campus at 5:30 p.m. or later puts me at a deficit.  I really start to lose energy consistently around 4:30 p.m. on days when I haven’t had a chance to nap.  By the time I get home, it’s all I can do to make dinner and then sack out on the couch. 

I think the thing that makes teaching so exhausting is that it’s a performance.  You have to be on all the time.  You can never let your students see that you are having a bad or an off day.  And as someone with a chronic illness, I tend to have those kinds of days more than most.

But the thing that I forget the most, it isn’t the pain – although I’m certainly glad when the pain is gone or lessened – but it’s the emotional toll that pain and not feeling well takes.  It’s the laying on the couch on Friday night, my head is pounding, my ears and throat hurt.  I’m curled under a blanket, alone with myself and my thoughts and my pain.  And that just sucks!

You can’t be complacent.  You can’t let illness get ahead of you.  But then again, you can’t also get too confident or cocky, because when you let your guard down, when you least expect it, illness rears its ugly head, and slaps you in the face.

So when illness slaps me in the face, privately I mourn the period of wellness that is now gone, but in public, I plaster a smile on my face and act like everything is fine.  To not do that would mean opening myself up for an endless onslaught of student complaints.  It would mean making myself vulnerable to student disdain and dislike.  And that’s worse than feeling like shit.

The Soundtrack Of My Life (Or The Music That Gets Me Through Illness)

For the next edition of Patients For A Moment, Phylor asks us to offer up the songs that help us make it through.  I was totally up for accepting this challenge because it’s something that I’ve been thinking about for a long time.

Coming up with the soundtrack of my life is one of the things on my bucket list.  That might sound lame, but…

So, here goes.  In some ways, you can see that this list sort of works chronologically.  For the most part, these are all songs that I really came into contact with after I got sick.

“The Story” (Brandi Carlile) – “All of these lines across my face/ Tell you the story of who I am/ So many stories of where I’ve been/ And how I got to where I am/ But these stories don’t mean anything/ When you’ve got no one to tell them to […] You see the smile that’s on my mouth/ It’s hiding the words that don’t come out/ And all of my friends who think that I’m blessed/ They don't know my head is a mess […]”

I think this song is so true.  If there’s one thing that illness has taught me, it’s that I have a story to tell, a story that is unique and important, and that is what I have tried to share with my readers over the last few years.  The thing that I think a lot of people in life don’t realize is that we all have pasts.  Some people can conceal their pasts, and others of us wear them right out in how we look or the way we act.  We all have something.  And just one of the many things that are a part of me is chronic illness.   

“Closer To Myself” (Kendall Payne) – “Digging deep, I feel my conscience burn/ I need to know who and what I am/ This hunger jolts me from complacency/ Rocks me, makes me meet myself […] I've been everybody else now I want to be/ Something closer to myself […]”

This song is so important to me because it’s where the title of my blog came from.  And I think in many ways, it’s one of my life’s projects.  I’m trying to evolve and become the best person I can be.  

“Butterfly Girl” (Jalene Johnson) – “Do you only remember the way you used to be/ Full of fear and doubt and insecurity/ Taking things that people said to build a web around you/ Thinking you’d be safe in that place/ I know your frightened and your wings are frail/ But summer’s here and you’ve outgrown your silky veil/ The walls of your cocoon have left no room for breathing/ So break free…break free/ Butterfly girl/ Don’t you know your beautiful by now/ Too long in hiding/ Free to shine girl/ Time to spread your wings/ And show your colors to the world/ Butterfly girl/ Don’t you know that you’re a precious miracle/ Suffering transformed to something wonderful/ All the things that had you bound have only made you stronger/ So trust me and fly/ Trust me and fly”

This song really speaks to me.  Obviously the butterfly being the symbol for lupus.  I just think that this song encapsulates a lot of the thoughts and feelings I have about my life. 

“Everybody Hurts” (R.E.M.) – “When the day is long and the night/ The night is yours alone/ When you’re sure you’ve had enough Of this life […] Don’t let yourself go, ’cause everybody cries/ And everybody hurts sometimes […]”

When I’ve been at my most down and out moments, I have listened to this song on repeat over and over again.  It makes me feel less alone, even when I’m by myself and in pain. 

“Bravedancing” (Rachael Sage) – “You came to me like / Lightning upon a picket fence/ Shattering my illusion/ With shockingly bad sense/ And I may never feel the same/ But I won’t always feel this pain […] So let faith fall on me now/ I’m gonna be my own best friend/ And if you do not see me bend/ Then you will know I have been/ If you do not see me bend/ Then you will know / Where I have been/ Bravedancing”

I listened to this song a lot when I first got sick.  A friend left Rachael Sage’s CD in my mailbox, and this song really spoke to me about my experience with illness.  First shock, then anger, and eventually, acceptance…

“F**kin’ Perfect” (Pink) – “Made a wrong turn, once or twice/ Dug my way out, blood and fire/ Bad decisions, that’s alright/ Welcome to my silly life/ Mistreated, misplaced, misunderstood/ Miss, no way it’s all good, it didn’t slow me down/ Mistaken, always second guessing/ Underestimated, look, I’m still around” 

This song is both for me, and for all the haters out there, who have doubted me, especially after I got sick.  I’m still here.  Despite them, despite me, despite everything.  

“Live Like You Were dyin’” (Tim McGraw) – “[…] I went sky divin’/ I went Rocky Mountain climbin’/ I went 2.7 seconds on a bull name Fumanchu/ And I loved deeper/  And I spoke sweeter/ And I gave forgiveness I’ve been denying/ And he said someday I hope you get the chance/ To live like you were dyin’ [...]”

Being diagnosed with a serious and chronic illness is life-changing.  And while I may not have done a tone of seemingly crazy things (yet), I have learned to live my life differently, to not hold back, to put everything out there, and to live fully and out loud.

“Brave” (Idina Menzel) – “[…] And I might still cry/ And I might still bleed/ These thorns in my side/ This heart on my sleeve/ And lightening may strike / This ground at my feet/ And I might still crash/ But I still believe/ This is the moment I stand here all alone/ With everything I have inside, everything I own/ I might be afraid/ But it's my turn to be brave […]”

I’ve always considered myself a mature person, but illness made me grow up in an instant.  It forced me to take command of my life in ways that I never had before, and didn’t expect to have to.  Being strong and brave doesn’t mean being perfect, and it certainly doesn’t mean coming in nice, tidy package.  Life is messy and difficult, but being brave means being able to handle things first on your own, and then slowly, letting others in.

“One More Day” (Sinead O’Connor) – “[…] An angel weeps, I hear him cry/ A lonely prayer a voice on high/ Dry all your tears, come what may/ And in the end the sun will rise on one more day […]”

Usually, if we’re lucky, no matter how bad things get, we will get another day…

“Be OK” (Ingrid Michaelson) – “I just want to be ok, be ok, be ok/ I just want to be ok today/ I just want to be ok, be ok, be ok/ I just want to be ok today […] Open me up and you will see/ I’m a gallery of broken hearts/ I’m beyond repair, let me be/ And give me back my broken parts”

I think the lyrics of this song pretty much sum it up.  No matter what, I’m going to be “Be OK”. 

“Weight of the World” (Chantal Kreviazuk) – “I used to carry the weight of the world/ And now all I wanna do is spread my wings and fly/ I don’t know why I was so afraid...all the time/ Memories seemed to bother me…my whole life/ I used to carry the weight of the world/ And now all I wanna do is spread my wings and fly”

Illness makes you take fewer things for granted.  It makes you get rid of all the stupid, little shit you were holding onto.  It makes you let go of the things that really don’t matter and hold dear to all the things that do.   

“Temporary Home” (Carrie Underwood) – ‘[…] This is my temporary home / It’s not where I belong/ Windows and rooms that I’m passin’ through/ This is just a stop, on the way to where I’m going/ I’m not afraid because I know this is my/ Temporary Home […]’

Whether you read this song in terms of something existing beyond physical life, or as all aspects of life being transitory (as I do), this song speaks to me as being hopeful.  Being sick is just one part of who I am.  And how sick or well I am varies based on many factors in my life.

“Unwritten” (Natasha Bedingfield) – “I am unwritten, can’t read my mind, I’m undefined/ I’m just beginning, the pen’s in my hand, ending unplanned/ Staring at the blank page before you/ Open up the dirty window/ Let the sun illuminate the words that you could not find/ Reaching for something in the distance/ So close you can almost taste it/ Release your inhibitions/ Feel the rain on your skin/ No one else can feel it for you/ Only you can let it in/ No one else, no one else/ Can speak the words on your lips/ Drench yourself in words unspoken/ Live your life with arms wide open/ Today is where your book begins/ The rest is still unwritten […] I break tradition, sometimes my tries, are outside the lines/ We’ve been conditioned to not make mistakes, but I can’t live that way […]”

I love this song!  It is the most upbeat song of the bunch.  And it gives me hope.  I think it’s fitting to end where we started, with a story.  My journey is just beginning.  My story is unfinished.  

Some of these songs are rather obscure, so you may not have heard of them before.  That’s kind of what I like about some of them.  They feel uniquely me.  And I hope that these songs inspire you or bring you comfort in difficult times.  I have often cried while listening to many of these songs, but overall, I think most of these songs are rather hopeful.  

Illness has made me very introspective.  Of course there is a different cadre of songs that helped me get through breakups and other things that have happened along the way, as well.  But these are really the songs that I think of when I think of trying to cope with illness, being in pain, and feeling alone.

Now the music I listen to when I’m kickboxing and what I like to rock out to – and is now part of a playlist entitled “Jamz” (you know, ‘cause I’m so “gangsta”) – is decidedly more upbeat.  I am happy to share that if you’re interested.

So what are the songs that inspire you?