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Showing posts with label 2017. Show all posts
Showing posts with label 2017. Show all posts

Wednesday, July 12, 2017

Today I Threw Away a Shirt, and other stories

[Content Warning: suicide, depression, & the cursey words. Take good care, friends.]


Today I threw away a shirt.


Two days into my 29th year riding this globe, I threw away a shirt.


I’ll tell you why this is significant. It wasn’t just a shirt.


It was the shirt that I was wearing on a day back in February 2017 when I intentionally overdosed on prescription medications.

Most people do not know about this. Most were told I was hospitalized for a GvHD flare-up. Generic, fit the bill. It was really the first time I was not transparent about what was going on. 

I have not been able to write about it. I knew that in time, the impulse would come. This is part of my story. I am still living it, but I am afraid if I wait until I’m ready or wait until it’s over I may not be around to tell it. That’s the truth of it.

This past year has been record-breaking. I’ve never struggled so much in my life. I had already been through what I thought was hell. Turns out I was wrong.

There are much worse things than a life-threatening illness. There are much worse things than chemotherapy and Hickman lines drilled into your chest and javelin ass needles burrowing into the back of your hip. There are much worse things than wiping out a rogue immune system with a life-threatening treatment. And there are even worse things than eleven months strict quarantine from the whole world. 
I honestly didn’t think that a possibility.

But there are worse things. It’s called aftermath.

After all these things--and more but I honestly cannot list it all, and you don’t want to read that shit anyway. (includes literal shit, too. Like when you contract a weird meningitis-ish thing that Infectious Disease never figures out one month post-transplant, almost die in a negative pressure room, shit the bed and get hosed off in the corner hospital bathroom like a diseased factory animal waiting to be slaughtered. But I don't want to overwhelm you with TMI or anything... After all these things, one more thing after another after another after another: I kept thinking I had hit the bottom. Rock bottom, here you are. Okay. ...Oh wait--the floor broke through--falling falling falling--SLAM This. Is. Terror. No? The ground gives way again THIS is Terror right here. And...holy shit THIS IS TERROR!? The repeatUntil I can no longer make a stupid exclamation, just wordlessly paralyzed laying on the floor with every useless fiber wanting to just melt into the earth like I never happened.

And so it goes. Another depth I didn’t think possible. Over and over again. This is depression, I am (still) learning. I have dealt with depression for most of my life, but nothing before now has been anything like the past year. And I can’t put a date on it because everything's a blur. Dates, faces, names, to-do lists, memories, vocabulary, words at all… it’s a blur. Every day slips into the next one, vaguely linked together with bouts of sleepless, painful nightmarish hours of darkness between times when the sun is lighting up the part of the globe I happen to be sitting/laying on. For many people with depression, sleep is the escape. Bed is the safe place. For me, it is a battlefield. This disease caused by the stem cell transplant causes me to not sleep, and (so much) more. I wake up 3-15 times a night with excruciating muscle spasms. I’ve only just come to realize that they haven’t gotten easier. I’ve just...gotten stronger, or something. Or I’ve gotten used to the pain to the point that the intensity of the pain and how long it will last are commonplace enough just so that I don’t have full mental breakdowns in the middle of the night as often anymore. Often I lie awake surging with anxiety about trying to go to sleep that before I know ot's 4:30, 5, 6am, the birds are starting to sing and the sun is rising. It does not bring me joy, and that makes me even sadder, to know I am numb.

My personality has once again -and worse this time- taken a nose dive off a cliff into unknown sea depths and my pockets are full of stones. I feel broken, intrinsically. It’s hard to put to words, but if I don’t try now, I don’t know that I ever will. I’m terrified to post this, and I almost never feel that way about anything I write. Not like this.

Because I’ve been hailed a “warrior” Strong, brave. I’ve even crowned my body as the Greek Goddess in times passed. But she’s dead. Or hiding very, very well. Maybe that’s my glimmer of hope peeking out. Didn’t know I even had that, so there’s something.

And...She’s not dead, not all the time. There are moments when she is okay. I suppose if my bed was a refuge it could possibly be worse -which is hard to imagine- just because I’d be there all the time. But it’s not an escape. Sleeping is not an escape for me. It never has been I don’t have an escape. I feel isolated, alone, sad and broken everywhere I go. I feel I don’t belong anywhere. My myriad problems are so far reaching that no one knows wtf do do with me. I don’t fulfill anyone’s checklists, only parts of them; so I get passed off and passed over. This is true. I wish it wasn’t and it’s hard to write this. I am letting people I love down. And even worse, I am letting myself down.

I wanted so much to be the woman who fucking burst through cancer like Wonder Woman, came out the other side with gnarly scars but tales of wisdom and a flash of wit. But I’m just not.

I want to stop writing now, but I am going to keep going to see what I discover.

I wanted to be the superhero of my own story, but the actual truth is that my mother, Joy, is the superhero of my story. She is my best friend, the only person in this world who has seen everything, including hosing off my shitty butt for literally 29 years now. Thankfully that skill hasn’t been needed since I was 24, but still. She’d do it in a heartbeat if it meant helping me in some way. She is the most selfless person I have ever met, and will ever meet. Most days when I still want to disappear and cease to exist, she is the reason I can somehow crawl through.

So, if you’re still reading, you probably have some questions. Maybe not questions you would ever ask in person, because mental illness and suicide is so taboo that no one knows how to talk about it. I don’t either. I’m just trying to tell a bit of my story.

I was hospitalized with a very bad bout of pneumonia at the very end of last year that knocked me on my ass. It made every other pneumonia I’d had (which are numerous) feel like seasonal allergies. They told me it would be months of recovery. Every hospitalization comes at great mental cost. Less autonomy, less ability to function, less alive. January 1, 2017, I decided I was going to either shave my head or kill myself that day. It seems extremely unreasonable, even now, but it’s true. I shaved my head.

And I finally looked on the outside how I felt: like a terrifying ghost sent to haunt some girl’s life. I have a picture from that day. In it, I look like I am dying.

I remember thinking about it days afterward, regretting shaving my head and how, had I chosen the other option, there would be no space for regret. I found some solace in that. It didn’t last long, I guess. I started a partial program, but I hated it intensely so I stopped going.

Fast forward.
End of February finds me dully staring at a handful of pills saying aloud It’s so easy. It’s so easy. Apathy. I don’t remember too much after that.

I remember my mom bursting through the door I had sealed off. I remember vaguely the EMT dumping and counting pills on this desk that I am currently writing on. I have flashes of being brought down the stairs, them not being able to get an IV in the ambulance, the fluorescent lights of the ER, police officers everywhere, asking how many pills, passing in and out of consciousness- was I dreaming or awake? Is this what dying feels like? This is what dying feels like. This is what dying feels like. My mother holding my face, Not today, sweetie.

I am in ICU for several days, four I think. I won’t go into details here but it is horrifying and confusing. No other words grasp it, really.

When I am finally more stable, I move to a hospital floor under 24/7 supervision/1-to-1/babysitting. Some of these folks are much MUCH better at this job than others. I could talk about mental health treatment for days, but I won’t.

Then I go to my first psych ward. Transferred at 1am. This one doubles as a geriatric ward (??) and so my exposure to diarrhea is immediate. The next morning I discover that I have, in fact, slept in a bed with feces on it. I am told Oh honey I’ll clean that up for you. As if it was mine. I can't fathom what is happening to me.

I get out relatively early because I have an apparently common burst of vivaciousness after an unsuccessful attempt. I am glad to be alive.

Fast forward.
I go to a scheduled check-in with my psychiatrist and it ends with a very distressing admittance via ER to another psych ward. Cue Terror of a busy ER. People screaming, crying, bleeding; the sickening laughter of nurses amid the chaos and the squelch of wet shoes on dirty hospital floors. Apparently it is raining. When I’m finally transferred, again at 1 or 2am, I’m put in a padded room and only later find out that it doubles as their intake room and is not, actually, be where I will be staying. The first words I hear at 2am from a night-shift worker who looks like he’s in a shitty nu-metal band is, “What’s with all the transgender bullshit? You're one or the other, can't fucking pick.” This is a direct quote. He is talking to a coworker who agrees. For all they know, the emaciated depressed girl lying in the padded room three feet away is trans. Thankfully I am not a trans person in a psych ward to hear this but it cuts through me like ice. The world is cruel. I want to cry but I am too shocked at everything. This stay is long. Terrible. Dehumanizing. Weeks go by. My mind goes numb, buzzing like a flash-bang has permanently gone off.

Fast forward.

I’m out, but not about. I am trying to put together a play with my theatre company: the one place I feel safe.

I go to MGH to attempt to address another piece of the problem; the "cycle of doom" as I am calling it. Chicken or the egg: Depression-->Chronic Illness-->Not Sleeping-->Not Eating-->Muscle Atrophy-->No Autonomy-->Chronic Pain-->Anxiety-->Depression. It never ends. Maybe psych meds aren’t the answer...they haven’t been working for me. I think there are just too many other factors and just modifying brain chemicals isn’t working. GvHD and/or depression, who knows, all of the above, has my body weight dropping. I’m trying to stop the shriveling but it’s proving nearly impossible. I weigh in under 100lb. My fatigue level is astronomically high. I still can’t sleep. I have no appetite and swallowing is physically difficult as my throat and tongue muscles have inextricably atrophied like the rest of my body. Depression descends like a shrinking grimy dented metal cage from which I see the entire world.

I leave MGH floating on a slightly elevated hope, somehow. Everything is not terrible. High praise from me. 

Fast forward.

I cancel/postpone/whatever verb makes you feel better about yourself The Play; for several reasons but I realize that pushing myself to do this show even for the next two months will actually kill me. I had written the script. I had already scheduled auditions. I had put down a sizable deposit on the space (which I still haven’t received back), I had started a GoFundMe for the production. I pull the plug.

I fall further into the hole.

Every morning I wake up and I cry. I don’t know why, it’s all I have. Sleep is for recharging. But for me it is a nightly battle of my body and I always fucking lose. I try to sugar coat these experiences to make them more palatable for my loved ones. But I cannot shake this dark feeling that it’s just other people’s selfishness that keeps me from taking pills again.

But the truth is, I don’t want to die. I don’t. I don’t think I am worthless, intrinsically. I believe humans are important, worthy of love, worthy of forgiveness and compassion. I am one of them, on my best days. But this body I am trapped in is more than a shitty cage. It’s a shitty cage that talks. It can’t eat, sleep, climb stairs or lift anything over four pounds. I’m wasting away. I say over and over it’s like my body is slowly dying. That maybe I’ve done my part already, and I’m not supposed to be here anymore. I’ve cheated death several times now. I’m in pain all the time. I can’t do this anymore. I can’t do this anymore.

Then something lovely happens: a day at the MFA with my mom, a road trip with a friend, watching movies, a new art project. For few moments here and there, depression fades slightly. It gives false hope to both me and the people I love, because depression always comes back, rearing, and I’m always facing an empty bed like I’m going to war every night. I am more afraid than I have ever been.

I want to talk about this solely because I don’t think I’m alone. I feel alone. God, I feel alone. I feel so fucking alone. But we humans hide a lot. From others and from ourselves. I am trying to not hide. This is really hard to write; I’m still struggling. But perhaps there is still a glimmer of a human spirit in here, who can say. All we want is to not feel alone.

The heaviness of every day. The self-hatred when I can’t force myself to eat, when I can’t leave my house because Panic has taken over and I want to disappear. I want to be in a body that works, that doesn’t want to cease to exist. I want a brain that doesn’t wish so deeply that I had never been born, telling my mother this on my 29th birthday. Watching my mother cry. I want a life where I am free.

I want a life where my Terror turns to Beauty. I want to believe it’s still possible, but that hope is more faint than it has ever been. I can’t find the words. Having a failing body, mind included, is baggage no one wants to carry around. The burden of how much this world has gone to shit the last few months; I can’t even begin to talk about it. I cry for the world: how I am unable to change it, not even in a minor way. I watch people get hurt, hurt others: and I hurt with them, and I can’t take it any longer. I watch BBC baking shows because for those 45 minutes I am anywhere else but here.  

God is either Love or all powerful. God is not both. This is also terrifying.

A couple months back something traumatic happened and it ended up with me walking alone over two miles home, mostly through the Beverly cemetery. I'm not actually sure how I managed that. Two miles. I cried over dead people I didn’t even know. I fell down a hill and cried because it took me a really long time and a lot of effort and pain to crawl to the rock wall and get up because my muscles are so weak. I touched every headstone I could. I finally asked myself out loud Do you want to end up here, silent? Is this all you are good for now? The fact that I cried while I asked myself this told me No, it’s not what I want.

I need to at least tell this story before it’s too late. Depression is a life-threatening disease that no one talks about. It can kill at any time. Sometimes there are tons of warning signs and symptoms, sometimes none at all. But I need to stress that this is a disease. In one, frightening moment of clarity right now, I am able to see it as something separate from my true Self. Something I am unable to do most days. Most days it feels like it’s all I have left, it’s what’s driving this thing. Everything else about me has died and I’m doing a really shitty job at faking being alive.

But today I threw away a shirt.

It’s a(nother) start.

Tuesday, April 4, 2017

Operation GSD


Today I started physical therapy again. It’s been far too long, and my body has degraded again down to the functional mechanics of an 85 y/o. This year has been discouraging for so many reasons, some of which I am not ready to talk about yet. In time, I will, but it’s not time yet. Suffice it to say that physical ailments and mental health are very closely connected and affect each other greatly. And I still feel like the fixing needed to get my body back is so extreme it feels impossible. Pneumonia really knocked it out of me. I can’t reach my arms up to get a plate off the shelf. The idea of walking a few blocks sounds exhausting to even try. I get mad when I realize I left my phone upstairs and have to retrieve it when I’m already running late and I can’t just jaunt up the stairs.

I am apprehensive. I have hated this body I’m trapped in; it’s been a constant uphill battle that never seems to cease and desist, or even plateau. I’d take a plateau, honestly. But nope, pneumonia and seasonal depression etc. etc. have set me back to square one. Do not pass go, do not collect 100 dollars.

But I’m starting small. Very small. As in, take a deep breath, right now. Do it. Just pause everything, and do it. Done? No? Do it. Close your eyes and do it.

Okay good. We default to exist in such a small amount of breathing space. But there is something cleaning, refreshing, manually calming, that ‘turning the corner’ feeling that happens in that brief moment when you allow yourself to do nothing else but take a deep breath.

So, I’m starting there. Again. And I don’t know how many more times I will start again. But I can. Even if I’m faking it until I actually believe I can.

My life path has been divergent, to put it in one word. And I do struggle with feeling disappointed in myself, and generally not feeling like I exist at all or for any real purpose. Depression is an unruly animal. But I’m starting again. #OperationGSD. aka, Operation Get Shit Done. Whatever it takes. Here we go. Again. Goals, I’m coming for you. #GSD!

I am learning so much about myself and why and how I work (and don't work). I am trying to take every bit of knowledge, every insight, every critique, every hope and dream, every disappointment; and turn it into something beautiful. That's what this means to me. It's not easy. But I hear my Self say: Take a deep breath, right now. Now, get shit done.

Monday, March 20, 2017

Spring Equinox: Her


This is a quick piece I wrote last night during my Sunday night writing group. It has not been edited and it is not finished, but as it is Spring Equinox today I figured I would share it anyway. But enough of these apologies. Here.

---

Her legs grow up from underground, her spine is the equator;
Hot and electric,
each vertebrae stacking
and un-stacking as she spreads herself across the globe.
 Her brain stem the core of the world.
The tectonic plates of her shoulders press together
when she’s worried or upset;
relaxing into deep waters when she sleeps.
Each limb is an ecosystem
And she has many;
More than you can count
Each arm emergent and bustling with busy lives
of bees and inchworms, katydids and whales
half of which are dying out
as she watches, giving all of herself but losing it all the same.

It’s a bit morbid, to think of her there- buried in the ground
sprouting trees from acorns fallen into animal carcasses.
But she is not alone. She has the world to care for.
And as a mother, there is nothing else but your offspring,
to offer. Your womb’s handiwork, your baby blues
blinking at the Sun,
gazing upwards from the oceans--

Wednesday, February 15, 2017

Superhero

And time goes by, and we are halfway through the second month of 2017. There is much to say about the state of the world, but do not fear, I really don't have the energy to talk about it here. Not my platform.

What I can say, however, is that seasonal affective disorder is real; and has been hitting me pretty hard. With weeks without a single sunbeam to sniff at, the all-consuming grey has a certain way to dampen the soul.

Additionally I just got out of the hospital after spending four days in there for the worst bout of pneumonia that I've had so far. I seem to get it at least once every year, thanks to my GvHD and lung damage, but this one hit me pretty hard. It will be months before I'm back to where I was...which was not great to begin with. So that's hard to take. I'm fatigued and weak and sleepy- but have abs of steel thanks to all the coughing. #blessed

I also dyed my hair (the bits of it that are left: I shaved my head on January 1st) a bright crazy purple yesterday and that is giving me a little lift and life in the 50 Days of Grey. #YOLO (am I now going to end every paragraph with a hashtag? Who can say.)
But in addition to SAD (oh aptly acronym-ed...#CRYING) I'm also realizing that I really owe it to myself and to anyone who might find this blog at any point who can relate so they don't feel alone: let me say it loud and clear: GRAFT VS HOST DISEASE IS THE DEVIL INCARNATE.

Not only have you endured cancer and all that shixxxx that goes along with it; you're stuck with an autoimmune disease that almost nothing is known about and can present in myriad ways from mild/annoying to life-threatening. Just as I am typing this my left hand is starting to spasm; one of my more painful presentations- which also makes it hard to do things...with your muscles. Which is pretty much...everything.

---break to calm hand spasms---

I've also been trying to gain weight to hopefully help with a couple of things:
1) being malnourished is just not good for you. My hair is thinning, and it probably contributes to my muscle spasms.
2) I want to be strong. I need to gain weight but I want to gain muscle and get my flexibility back. But this appears to be a very very V E R Y slow battle where there are more losses than wins.

Just these past two weeks with pneumonia, I lost 6-7 pounds; which, when you weight like 100lbs to start is not good at all. It is hard for me to go up even a short set of stairs. I get winded from my crapass lungs and my leg muscles (if you can call them that. I like to pretend like they are built-in crappy leg warmers) are tired and shaky.

Chronic GvHD is a real thing. Even if no one really knows anything about it. It's real. And it's real hard. It's often invisible; people tell me I'm looking great, etc. because I'm so skinny etc. I know they mean well, but can I just say on the record: let's stop talking about people's weight?!?!?!! I don't need to be told I'm skinny and it doesn't make sense to me that somehow that is culturally appropriate to talk about but the opposite would be incredibly offensive. So let's just stop talking about it. Let's make room for people to love themselves without an "affirmation" from you about their body. #rant.

I struggle every single day with cGvHD. My eyes don't produce tears (something I'm trying to work on, but there's just so many meds...), I have weird skin discoloration/hyper-pigmentation all over my body that makes me look like I'm covered in bruises all the time. Weight loss seems to also be a symptom of cGvHD; for unknown reasons at this time (according to several studies I have read). I know I struggle with appetite and nausea and difficulty swallowing, which probably all play a part to some extent.

HOWEVER there is good news, among the grey days and hospital stays... I've decided to go back to school to pursue an MFA in Directing. I've been looking into several different programs: getting the ball rolling early for fall 2018. It's good to have something to look forward to. #excited

Just trying to remain the superhero of my own story. Which is much much harder than I could have ever anticipated four years ago. I want to remain that strong human who beast-ed through cancer and came back with super powers... but it is getting more and more difficult to stay positive. So, sometimes you just gotta start outside in and dye your hair purple.

#kbye