CMML-2 is giving the ol' college try. But in the end, the home team is going to win. Here's some musings and updates of my expedition through preparatory chemo, a stem cell BMT, and a year of living in a bubble: henceforth to be known as the Spaceship Coupe.
...and now 4 years later, dealing with a refractory autoimmune disease cGvHD caused by life-saving cancer treatment. Still recovering. Still surviving. Or something.
Today is full of contradictions
running up and down my arms
shivers and bumps, stinging my tearless eyes
I'm so proud of what we accomplished, this theatre project
was exactly what I needed, in so many ways. It is
life. It gives me life. When I have almost nothing else
But it's over now, and I'm left
with this crushing thing of a body
a mind furrowing its brow
trying to figure out how to pick up
back to wasting away, watching my dreams
turn over into ugly brash metaphors of my life:
broken teeth on my garage steps, not just in my crumbling
dreamspace. It is lack of control. Everywhere.
I never thought myself as fragile. I hate this thing
I'm trapped in
A body that won't heal
weak and small, skeletal, with
a small circle of people saying
"it will get better"
how much time? how much longer?
will it ever end? will I ever be able to climb stairs without
having to stop to breathe will I ever regain feeling in my legs
will I be able to reach the bowl on the third shelf
will I be able to hike a mountain
will I be able to dance
will I be able to outstretch my arms with abandon
will I be able to cry again
Two days into my 29th year of 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 I was wearing on a day in February 2017 when I intentionally overdosed on prescription medications.
Most people do not know about this. Most people were told I was hospitalized for a GvHD flare-up. I have not been able to write about it; but I knew 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 entire life. I’ve been through what I thought was hell already. 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 ass needles the size of javelins burrowing into the back of your hip. There are much worse things than killing a rogue immune system with a life-threatening treatment. There are even much worse things than eleven months of quarantine from the world. I honestly didn’t know that was a possibility.
But there are. It’s called aftermath.
After all of of these things, and more, because honestly I can’t list it all and you don’t want to read that shit anyway (it includes literal shit, too. Like when you contract a weird meningitis one month after your transplant and almost die and shit the bed and are hosed off in corner the hospital bathroom like a diseased factory animal waiting to be slaughtered. But I don’t want to overwhelm you with TMI anything.) After all of these things, one more thing after another, I kept thinking I had hit the bottom. Rock bottom, here you are. Okay. Oh, this is Terror. Oh, no I was wrong, THIS is Terror right here. Holy shit, THIS IS TERROR? Until I can’t even make a stupid exclamation anymore and I’m wordlessly paralyzed lying on the floor wanting with every useless fiber to just melt away into the earth like I never happened.
And so it goes, another low depth I didn’t think possible. Over and over again. This is depression, I am 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… 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. My autoimmune disease from my transplant causes me to not sleep, and more. I wake up 3-15 times a night with excruciating muscle spasms. I’ve only come to realize that, they haven’t gotten easier. I’ve just gotten stronger. Or something. Or at least, I’ve gotten used to the pain to the point that I know (usually) the intensity of the pain and how long it will last that I don’t have full mental breakdowns in the middle of the night as often anymore. Often I lie awake with anxiety about trying to go to sleep that it is 4:30am before I know it and 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 an unknown sea depth 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 as a “warrior”. Strong, powerful; I’ve even crowned my body as the Greek Goddess in times passed. But she’s dead. Or hiding very, very well. I guess that’s my glimmer of hope still, peeking out. Didn’t know I even had that, so there’s something.
She’s not dead, all the time. There are moments when she is okay. I suppose if my bed was a refuge I would possibly be even worse off than I am, which is hard to imagine, because I’d be there all the time. But it’s not an escape, sleeping is not an escape for me. 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.
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.
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, 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.
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.
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.
Warning: some harsh language ahead. But, yeah. Life is [insert harsh language].
Still at MGH; been here since Monday. I just went
down to the second floor to have a swallowing test; as I seem to be aspirating
things when I swallow. It's not apparent from looking or feeling
externally, but since I keep choking they waned me to take this test to have
the X-ray to look at for comparison.
I did not
sleep last night; maybe 3 ½ hours. I was up late talking with my sisters. To be
frank: life is fucking hard. There’s no other way for me to describe it right
now. Life is hard. God Damnit. And it’s so fucking hard in so many ways; you can’t toss a
pebble without breaking glass.
So I didn’t
sleep well, even after we decided to all go to sleep at 4am. I miss my sisters,
I love them so much and it hurts me to think of all the ways that life breaks a
person down to the bare minimum of humanity. It hurts me so much.
And I’m so tired
of not being able to properly cry I could just scream until I die. My eyes don’t produce
tears (and the same for my mouth/saliva…which is one component making swallowing infinitely more
difficult) and I haven’t cried tears in over three years. I forget what it feels
like. But I miss it all the same. When I cry, my face contorts and my body
hurts- I often get headaches from the tension and lack of release. But there
are no tears.
So I’ve been
(not) crying most of the morning, if I’m honest.
But when I
went down to take this disgusting swallowing test, (I get so much anxiety from
having to put foreign objects into my body; barium isn’t “absorbable” by the
body, but that really doesn’t make me feel any better. I’m still swallowing a soft silvery metallic alkaline earth metal. That’s the
truth. I don’t want it.)--
But when I got down to the waiting room before the test,
this cute technician came through the room I was in; laying on my stretcher,
looking a mess. He smiled at me. And then he turned around to leave and I read
the back of his shirt:
It doesn’t get easier.
You just get stronger.
It washed over me like a tidal wave. I felt everything at once.
I wept, tearlessly. My heart broke. My soul ached like it was leaving my body
It doesn’t get easier. You just get stronger.
That statement drowned me, as I'm sitting lifelessly
on the stupid stretcher covered by a thin blanket. I wanted to believe it. I
do believe it. But it’s so hard to. I don’t feel like I’m getting
stronger. It’s the opposite. Everything feels like it's getting harder. I feel
like my body and soul are just giving up, slowly letting go and letting go and letting go after trying to
hold on for so fucking long. It’s just so hard. I want to believe I am getting
stronger. That I can conquer all this shit. All the physical failures of my
body; rise above. All the weight of my psyche; ascend like a goddamn phoenix.
Own all this. Own it all, claim it as my life, shitty as it is, and just rise.
Wake up, emerge, rebel. Survive. Be better on the other side. Stronger, deeper,
But the truth is I’m tired. I feel more often than not that
I’m just done with all of this. Finished feeling, being, existing like this any more. I feel
like I can’t do it any more. My body withers away, over and over before my
tearless crying eyes. I watch as my mind plays devil games. I feel helpless
against all of it. My auto-immune disease is mysterious and unfamiliar; no one
has answers. And my mind is along for this villainous cycle; riding the roller
coaster from Hell through all the zero-G free falls and it feel like there is
It doesn’t get easier. You just get stronger.
Makes me cry. and I can’t help but admit it’s because I
believe this little anecdote. I want to believe it. That human beings are
fucking phoenixes. We rise from the burnt ashes of our lives over and over
again. I’ve seen it so many times; my heroes, these incredible spiritual
masters who live through unimaginable
horrors and emerge on the other side: stronger, deeper, richer, wiser. And I
want to believe that for myself. I have this sneaking suspicion that hope is
still out there. And it makes me weep.
Life is hard. It’s so fucking hard. There is so much loss.
Sometimes it feels like there is nothing but loss. Loss of faith, loss of
childhood, loss of innocence, loss of life. Heavy things we have to carry
forever. Poverty, starvation, grief, disease, racism, despair, hatred, the
weight of the world. How can a person bear it?
I don’t know. And yet we do, somehow.
I keep thinking, reminding myself: be the superhero you want
to see in the world. Be that person who rises from the ashes and spreads her
wings like a fucking Queen. Be that wisdom, strength, power and resilience.
Embody faith, trust, hope, love. And the greatest of these? Love? Love for
yourself? Love for the world? Love that conquers all the darkness that drowns
the world over an over?
It doesn’t get easier. It really doesn’t.
But maybe we
can get stronger. Maybe I can be stronger. Strength in weakness; the ultimate
paradox. The reason why the story of Jesus and a God who embodied every pain
imaginable makes me weep. Because it was for love. It is for love. There is
profound strength to be found. Even in weakness. I see it, over and over in
people I love and admire and hold in the highest regard. Now I just need to be
able to see it in myself.
This is terror. This is water. This is beauty. This is life.
a bit of barely-edited work I wrote in writing group the last two hours. It endlessly fascinated me how three different prompts yield three different works, but there always seems to be a through-line. I never know my brain until I start writing, and even then...