This Is Just To Say

I have eaten
the plums
that were in
the icebox

And which
you were probably
saving
for breakfast

Forgive me
they were delicious
so sweet
and so cold


- William Carlos Williams

(my favorite poem, until further notice)

If I Could Have it Back // I'm Moving Past the Feeling

(press play below & listen while you read)

Arcade Fire - The Suburbs Continued

if I could have it back

all the time I wasted

I'd only waste it again...

waste it again, and again, and again

I've got to ask

sometimes I can't believe it

I can't believe it

I'm moving past the feeling again

sometimes I can't believe it

I'm moving past the feeling

....

Arcade Fire lyrics, you have never been more poignant.

I mean, you probably have.  I'm likely lying ("Sleeping is giving in," "Come on hide your lovers underneath your covers," and that's just in one damn song, y'all).  But today, I've been listening to this song on infinite repeat, because it encapsulates the feeling of being left behind.  These are the heated, burned leftovers you microwaved for too long, the Miss Havishams who applied lipstick  outside the lines, just a sad reprise the days of your former healthy self when everything was much sweeter, when you were not only just blissfully ignorant, but when you soared free in doing so.

The ache in your heart to return to your former healthy self is very much real.  That thread snags until the hole is larger and larger, and you'd trade anything to return to have it back, no matter what that trade would entail, even if that means wasting time living a simple life (but wouldn't that life be gorgeous?) when you were disease-free.  When you're holding hands saying some shitty "Gee whiz, everyone go around be so thankful that we're well!" during Thanksgiving dinners in high school and college, my eye roll rivaled Liz Lemon's, because I was selfishly worried about my upcoming paper or the fact that some dude I adored just might not be into me.  And that's ridiculous, because that is shit everybody goes through. When I think about these things now, I almost feel like they don't count as things people can stress out over, because they're so ordinary.  Does that make sense?  The struggle of having Holy Shit health problems is thinking back to petty life issues, and how much they used to matter.
I  shouldn't have been so self-absorbed in certain ways.  I should have been more grateful, done every bit of living.  My body is at war, but I'm more at peace now, and feel like I take advantage of every bit of living I can now, on days when my body allows me, because it robs of so much on other days.  Little did I know that that in a few years I would be so ill, that these diseases would rob me of so much real living.  There are so many days I look in the mirror, when my I'm in a flare and my joints are swollen or my Erythromelalgia is flush, and I'd like nothing more than to DeLorean the hell out of here.

This isn't possible, and experiences make up who a person is, of course.  Another silver lining (can we give them a snazzy name at this point?  Silver lining is so generic.  I'm open to suggestions) is chronic illness draws the line between who will be there, holding you up in the end, and who will bail.  I once had an ex-boyfriend tell me that living with someone who had an autoimmune disease was "so hard for him" that he " often contemplated getting in car accidents on his way home from work so he wouldn't have to deal with it all (aka a sick girlfriend) when he got home."

Sounds like someone needs a DeLorean more than I do, y'all, because no ma'am.

  Back to the badassness that is Arcade Fire, and why this song is ineffable perfection (though it's mostly self-explanatory, so 10 points to Sortie the Sorting hat, because there's no way we're all Gryffindors, guys)

Truth be told, I haven't been able to get into Reflektor album as much.  I'm a bigger fan Arcade Fire's previous album, The Suburbs, and in listening the album in its entirety (particularly the title track and then "The Suburbs Continued," all in one glorious loop).  There's an inescapable culmination of wanderlust and heartbreaking nostalgia (with... I don't know, perhaps little vaudeville, just for good measure?  It's inexplicable).  This is so me right now,  all of that, down to the very last drop.    All of it, aside from the vaudeville part... but who knows!  Maybe someday when they find cures for all my weirdo autoimmune/other diseases, you'll see me tap dancing with Ginger Rogers (she was into vaudeville prior to her movie career).  Can we bring her back now please?  This is definitely one of those right place/right time songs I'll look back on next year and will associate with these feelings of wanderlust and fight or flight.    

"If I could have it back" lyrics from The Suburbs Continued certainly reminds me of the days when I'm not a prisoner in bed, too to sick to even walk to the bathroom when Cyclic Vomiting Syndrome takes hold (ugh, self dignity is out the window), when the Epilepsy makes me seize if I stand or walk for too long, or when I don't wake up having had grand mal seizures on the floor the next morning, bruised and battered and beaten, with rug burns on my face.  Gross.

When I was diagnosed with Endometriosis and Adhesions in 2009, nobody told me that mourning your former healthy life is a huge part of the process of the journey of being chronically ill; It's truly embracing a new side of yourself you didn't realize existed until now.  Friends, family, boyfriends, girlfriends, best friends... you find out quickly who loves endlessly, and who runs.  Another silver lining, perhaps.  It sorts the pretty caring from the fake quite quickly, and I've been blessed (ugh, I hate that I can't use that word without the #blessed and horrible praying hands, but I truly am, let's say, lucky) to have a wonderful support system.  I just hate being so damn far away them all, but again, another story for another time.

  I can't reiterate this enough: if you are healthy in any way at all, don't take it for granted like my turkey lurkey Thanksgiving self did.  We spoon kids (read what the spoon theory is here) would love to have your once a year flu, your broken toe, your jammed finger, even your broken heart.  These are normal afflictions.  Those of us with autoimmune diseases or the like are dealing with uncharted territory; each disease ravages its hosts body a bit differently, and it's a mistake to compare two people who have Lupus, Rheumatoid Arthritis, Epilepsy, Endometriosis, etc.  Some of our specialists even forget this sometimes.

95% of the time, I can truly laugh about how damn ridiculous it is that I have a veritable pile of trash pile crazy diseases.  f you can't laugh about it, you're lost.  

Still, here are those times when I find myself with head in my hands after a fresh diagnosis with a new disease (which happened a month ago) or my latest (fresh/AWESOME seizure episode where I passed out in a public place and paramedics worked on me in the middle of the floor because I was seizing nonstop,) and I simply can't laugh through it just yet.  There will be a time, in a week or a month where- as Arcade Fire puts it so well - I'll move past the feeling and where I'll laugh at the absurdity of it all,  but I'm not there quite yet.  I have to feel sad, go through the motions, cry my eyes out, listen to Bon Iver or Elliott Smith or something.  It's a constant struggle for me to realize that that's okay.  All I really want to do is get in my car and drive, because with my music turned up and my windows down, because that's always, always been the best time for me to think.  I instinctively go to grab my keys, but then I remember that I smashed my car into a tree head on in December, likely during a seizure, and sadly during the only time I've driven since August -  so I don't have a car anymore, likely during a massive seizure, so.  That was last December, my first and only time I have driven in almost a year.  You have to be seizure-free for 3 months before you can drive again, and I have no idea when that will happen again, but I have to believe it will.  My first seizures were in August of last year, so my goal is to be driving by September of this year.

this is what I plan on driving

I have a neurology appointment tomorrow, and damnit if my doctor doesn't figure out something that stops me from seizing so much + gives me something adequate for emergency situations.  But I'm determined to kick epilepsy ass, because for the past two (yep, two) weeks, I'm in such a bad flare that I can't been able to stand up without having awful seizures to follow.  But damnit if I'm not determined to get this under control.

While I'm working out the specifics of getting better, I admittedly have more time on my hands, though it's a different kind of free time than you would think.  It's not lying in bed with my feet up, watching my stories with my head tossed back as I laugh at the suckers who work their 9-5 job... IT'S BETTER!

No, really, not working and feeling productive is the worst.  It's doctors appointments, being keeled over in pain, vomiting, being admitted to the hospital, but most of all, it's aching for normalcy.  I had hoped I had this under control, because I had had a relatively (for me) better two or three weeks prior to this seizure spell I'm currently under.  And now, nearly 2 weeks of I feeling like a complete trash can.

Fingers crossed for a better neurology appointment appointment tomorrow than they have been in the past.  

June 3 // Explanations & Dream Sequences

Hello blogging my old friend.  I've come to blog you once again.  No promises I won't break your heart, but I likely never had it in the first place, so, there's that.  

This feels good to write.  Chronic illness/disease =  literally fighting for your life.  You feel like expired milk, yesterday's bread, clearance bin reject hell.  It's grim, to say the least.  I've put off writing about this for long enough, even though so many thoughts rattle around in my head about this throughout the day.  I don't always have the chance/capacity to type this out (it's taken me a couple of days to finish this single blog post), but I want to advocate for my fellow brothers and sisters with chronic illness by shedding some light on every aspect of how we live.  I'll do so throughout this summer (and perhaps beyond?).  If you don't know me well, you're about to.  I'm going to explain everything (medical/non medical), and I'll update every couple of days.  I'll try to respond to all comments, and I welcome your questions.  I may take a bit longer to respond, particularly when I start questioning what happens with this season of Orange Is The New Black.  Let's cross our fingers that they don't make another "magical Norma," because what the hell was that last year, and sketchy surprise prison tattoos?  DON'T THEY KNOW I'M SICK AND BINGE WATCH THAT CRAP?  You guys.

So yes, my blogging this summer is going to be like that 600 minutes program you did as a kid, only you can't recycle those minutes for an Accelerated Reader test later on in the year.  Handle your scandal, y'all.

Until next time, stay cool, my babies!

Teasers for the future: Hospital Stays!  First Dates!  What's (Medically) Wrong with Leslie!  Where in the World Carmen San Diego REALLY is!