Tag: amwriting

cannabis diaries, 913p 25 november, 2019

So I think this might be the best, most visual way to explain this.

My illness, ultradian or ultra ultra rapid cycling bipolar disorder type 1, is something I was most likely born with. One flavor or another of bipolar can be traced in at least one of my parents’ genetics, if not actual, confirmed diagnoses. It is the main reason I chose to remain childfree. My illness is a living, vibrant thing.

I look at it as a plant, aged and strong, rooted deep, entwined. Resilient. It consumes resources, sometimes more than I have available, leaving me in deficit, leaving me empty.

There is no brain; it is not sentient. There is no arguing with it, no reasoning. It lives, and breathes, and consumes.

Imagine you had such a plant, a green, growing thing. You were told it needed water every day.
So you water it, every day.
Your plant drinks the water, consumes it. Grows.
But one day, the soil is dry, even though you watered your plant that morning.
You add more water, hoping to not drown the poor thing.
It perks up, her leaves shiny. You relax.
The next day, your plant has collapsed, as if dead.
(she was fine the night before)
You water her, and watch, and wait.
Your plant seems to not be dead after all.
More water, but the soil is dry again. More water.
Your plant rallies, for a minute; an hour. More water.
(d r y)
More water.
More.
You are exhausted from keeping watch over this wee thing
(how can she be so thirsty?)
and yet watch over her you must if she is to live(if
you are to live).
how is it that she consumes everything you are giving her? all your aid,
all your care.
All the tools you have seem useless (and yet you know they are working)
You understand that the only way to save her is to drown her
overwhelm her
keep drenching her with water until she is overfloating
and then floating,
f i n a l l y
water as medicine, filling her veins, finally darkening the soil
as cannabis smoke fills my lungs, my bloodstream, finally lightening my mood.

Some days there isn’t enough water to slake her thirst.
Her soil dries, her leaves wilt; she droops.
she sleeps.

Cannabis sativa is the only medicine I have ever taken
where I am comfortable controlling my dosage.
Where I know that no matter how much I need, that I will be safe.
That I don’t have to wait out some interminable half-life
to take another dose.
That self-medicating is no longer a dirty word.

10:21a 28 october, 2019 (10:53p 14 november, 2019)

intellectually i think i can wrap my head around it but my heart
my heart feels left.
i know he’s not leaving me
i know he’ll be back
but i do not know this protocol
can i not even communicate?
(not anywhere near, no)
i don’t know that i can do this
(yet i am,)
communication is so much a part of us
of who we are
and how can i just shut that off?
(i can’t. it appears he can.)
i know that my illness is tempering this.
amplifying this.
(yet without communication,
without the comfort that i had not yet reached in our relationship,
there is no solid ground on which my shaky legs can stand)
(i cannot ask)(yet i have asked and asked my friends and they don’t know either.
there is no way to know)
(and i see that i used “us”
i see that i used “we”.
i don’t feel that comfort now, those words are lies.)
my brain lies to me.
hates me, often.
less so lately, but still.
breathe in, and out.
get some sunshine on my face.
(harder still, now)
fix my makeup.
(again)
go to work.
(go to work)

9:16a, 14 november, 2019.

okay so you know when i wrote to you and said,

“now that I’m on the other side of your being away,
I mean, you’ve been gone longer than what’s left,
it’s feeling easier.
I’m excited for your return, but not in a desperate way any more.
It doesn’t feel so empty.
Or at least, not right now. Hope is a good thing💜💜”

remember?
and then the next day
and the day after, now

nothing.

and now it feels desperate again.

I have none of the answers, I’m just guessing at them
i don’t even know what the questions are anymore.

It is the silence that I cannot bear.

cannabis diaries – 845p, 6 november, 2019

what this drug allows me to do (you numbskulled, pretty-faced idiot) as you postulated isn’t done by taking away my pain. not at all. what it is doing, however, is turning down the volume a little bit. to a more manageable level of chaos. to separate the noise from the signal. it is allowing me to filter out all of the extraneous thoughts (oh and they are Legion), just flick them away like they were smoke rings. leaving no trace. no impact. just distapeared into the air. it allows my nervous system to not be quite so nervous. to actually be calm. be calmed. to remember kellen’s voice as if it lives in my head now. to comfort me when i need. am needful. am unwell.

my nervousness is so much not a thing any more that i am shocked by its absence. shocked, but quietly so. it seems to take a lot more to get my anger up now, and that i am much slower to even want to. that i more want to turn the feeling over and over, inspecting it, finding its flaws. taking them apart. fixing them, or discarding what i don’t need. moving forward.

(and this is the very last time that i will think of you in relation to my wellness. since i know that you don’t read my work it won’t make a whit of difference to you but it makes all the world of difference to me.)

8p, 6 november, 2019. conversation derailment.

i feel everything
all of the time.
everything. Everything.
EVERYTHING.
Some days, minutes
some times the sound is turned down? From here, to here
(10 to a five)
so I can get through the day with a modicum of effort,
none enough to stop me much less slow me down.
other days? others try to kill me
slowly, quickly, whatever it doesn’t matter
but I’m learning
l e a r n i n g
what works, what my diagnosis is currently what i need
what I need to make me sane
sane enough to breathe.
i keep saying don’t i?
i keep saying i am able to steer this ship now,
i am able to keep her off the reefs and out of the deeps.
sometimes the trip to safe harbor takes longer than budgeted for
i am learning
to let go, to give up and let the medicine do its work
that i am the medicine
the sum of my experiences is what will save me
i am the hero of my own story.

Part 3. To the very last.

Gary is gone.

He was pronounced dead at 5:09pm, 13th September, 2017. 

I never got to say goodbye to him, to see him respond. My 46-year old husband of nearly eleven years, my partner of fifteen, is gone.

In the forty minutes​ I spent trying to get to him that morning, trying to park, screaming at anyone I could, driving around the hospital campus like an unhinged lunatic, he was taken to neurology for the stroke. Fifteen minutes before I finally made it inside the hospital.

They were successful in getting the clot in his brain. While he was recovering, he began to crash. They found a massive pulmonary embolism, a huge blood clot in his lungs that would not move. It’s something that could have just happened or been there for ages undetected. The doctors kept me updated every step of the way. 

I went into the room, he was sedated and intubated. I held his hand, stroked his face. I talked to him while the doctors got things ready. I told him that I loved him, and that he was safe, and so very brave. I told him that I had him. That he didn’t need to be afraid anymore because I was there. That he was safe and that I loved him. I told him that he was going the right way, that he was fighting the good fight, and that we have so much more to talk about. I know that he could hear me and that my voice helped him to calm down. Knowing that helped to calm me down.

They put in a central line near his right clavicle, to add medication to try to bust the clot. The line went in fine but the clot would not move. They tried chest compression. He crashed, his heart rate and blood pressure bottoming out. He coded, they tried resuscitation. They kept on trying. He coded again, and they kept on trying. They gave him drugs normally not recommended to try and help because he was dying and who cares if he goes into VT if they can get him back. His ICD kept on shocking him. They tried bypassing his heart, his arteries. I know I’m getting some of this wrong.

The neurosurgeon came in, told me that Gary was crashing, that they were trying everything, working as hard as they could, that there were a hundred people in the surgery suite. I believed him. My mind clear, eyes wide open, I told him that Gary was an organ donor, knowing I needed to tell them. He looked at me, his eyes just as wide, and nodded, a grim look on his face as he pressed his lips into something approximating a smile.

They tried more. They finally stopped the chest compressions and he died at 5:09pm.

Because he coded for so long, because his entire system was shutting down piece by piece by piece, most of his organs could not be harvested. I understand that and am okay with that. Gary would have wanted to try, but if it didn’t work, oh well.

I got off the phone with LiveOn NY somewhere north of midnight, and what we could donate was his corneas, his bones, his skin, his heart valves, and his veins. He would continue to help others.

He had finally, in his last two days on this planet, after over fifteen years in our relationship, just begun to understand me, to be able to empathize with what I deal with with my illness. He recognized how much more we had to talk about, how much work we now had in front of us, and was eager to begin. That’s what I’m holding onto. Not the angst and anger, not the frustration and picayune bullshit of a very difficult marriage, but the final understanding and desire to work on us, on making us better.

I have lost the smartest man I know. Someone who, for all his faults, for all our mishegoss, always expected the best of me, from me. Who didn’t know how to show that most of the time, but he was learning. He’s stubborn that way.

Thank you to everyone. I love you all. I feel surrounded by love and light.

Part 1. 13 September, 2018

This is how I began my morning one year ago today. Texting with Gary, who was waiting for the Klonopin to kick in. I never heard his voice that last day, never saw those beautiful blue eyes of his.

I have tried to imagine what was going through his head as he composed that last post. As he wrote one of the most beautiful things I’ve ever seen. My husband was a writer, but normally his work was infused with snark and sharpness and cleverness. Not that day. That day it was pure, and true.

I don’t know if he had already had the stroke; I’m imagining he must have done, otherwise why would he be going for a CAT scan? What I do know is that if in fact he had already had a stroke as much as I would have liked to see him wink at me, as much as I would have liked to see his face, as much as I would have loved to hear his voice telling me one last time that he loved me more, I am happier for the fact that I can remember those things in my head untarnished, not tempered by the damage that the stroke would have caused. I am truly grateful for my supervisualizer memory, that these things are as clear to me as if they happened a second ago.

The last bit of my text to him, the unfinished bit, it was me being so incredibly frustrated that I couldn’t find a place to park. The hospital was under construction, there was an enormous event going on and it took me 40 minutes to park. During those 40 minutes he had been taken in for neurosurgery and I never saw him conscious again.

One year on, I’ve gotten nothing done, nothing that I was supposed to have been doing. I don’t know how I’m going to keep my house and I’m pretty sure I’m going to lose it. I have just about nothing left, no strength, no energy. But I have my memories of him.
I love you more.

I’d recorded Teaz’ka purring and sent it to Gary

Well-deserved relief. 10 September, 2017

Gary Hoffman is feeling optimistic. 10 September 2017 · Valhalla

“I feel so much better after a whole lot of sleep. Took Xanax to get to sleep around 6:30 (cause I know hospital day starts at 5), but none since. Very wobbly and having lots of trouble rembering [sic] things due to meds. Probably Lidocaine which is powerful but bad long term. Thanks so much for all the well wishes and support.

Will decide about yet another ablation Monday.”