On Goodbyes

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At 12:04pm on Saturday, May 13th, my mother drew her last breath while my father and I held her hands. She died at home, did not suffer or feel pain at the end, and was lucky enough to say goodbye to many people who loved her over the past few weeks. She will be missed, but it is a comfort to know that she is finally free from the pain she’d lived with for 25+ years.

She lost her 6 month battle with cancer that day. The flowers I’d brought home for her for Mother’s Day (which she did not make it to) bloomed the morning she died, their timing both heartbreaking and beautiful.

Goodbye, mom. I love you.

Living with Yet More Dying

My mother is dying. It won’t be long now. Maybe a month, probably not more.

She developed some severe neurological and memory problems about 6 or 7 months ago and ended up in the hospital for almost 60 days to address this. What little muscle mass she had wasted away on bed rest and she was not longer able to walk or stand or care for herself. She came home, lived in her rented hospital bed, and had nurses and caretakers watching her pretty much 24/7/.

We figured that she’d come back from this, eventually, to some degree. Physical therapy and occupational therapy and regular doctor’s visits would heal her. It would take a lot of money and lot of time, but it would happen.

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Then she got cancer. The initial prognosis was positive and the treatment was chemo by pill – a gentle, targeted version thereof that wouldn’t cause much fatigue or hair loss or any of the normal symptoms. A few months of that, some radiation therapy, and then surgery to remove the tumor once it was dead. Simple. Nothing to worry about.

Except that they did remove the tumor and found that it had metastasized and spread to other organs.

My mother has stage 4B colo-rectal cancer and it is killing her pretty quickly.

She is 57. She is young, really. And I’m only 32 and didn’t expect to have to say goodbye to her any time soon. But it doesn’t matter what should be because this is what is. She’s not in much pain anymore, not now that they’re hitting her with dilaudid every few hours, but she used to be. Like me, she has lived in chronic pain for years – since I was young.

So while I’m not ready to say goodbye (who ever is?), I’m grateful that, at least, she won’t be in pain anymore. Thank goodness for small favors. But the toll that all of this death and mourning in my life takes is massive. It’s a huge expenditure of energy just to keep moving forward. The psychological stress of grief, experts agree, can be devastating.

So there’s nothing to it but to march forward. Where do we go from here? Not sure. But it must always be forward, never back.

Brain Games

Send help. I’ve decided to study more languages to keep my brain fit and healthy. Right now, I’m working on:

  • French (I took a few years in high school, so I’m brushing up and cementing conjugations and grammar and stupid, stupid gendered nouns)
  • Japanese (again, I’ve studied it before and I lived there for a year, so this is just trying to stop the hemorrhaging of knowledge that comes from lack of practice)
  • American Sign Language (I studied it for a few months about a year ago and need to start over from the beginning to get fingerspelling and common phrases down)
  • Russian (this is the doozy – I’m having a really hard time with both pronunciation and learning Cyrillic)

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For French and Russian, I’m using the free crowd-sourced language-learning app DuoLingo on my phone. It lets you set goals of as little as five minutes of study a day and rewards you for meeting your goals as well as for logging in every day. It’s a gentle way to learn languages that use the Roman alphabet with some game-like opportunities to learn and practice reading, writing, listening, and speaking.

It’s much harder with Russian as it often gives you a long and complex word one to two times and then expects you to be able to type it out from memory. This doesn’t work for me; I’m not a good memorizer and never have been. It also doesn’t provide any flashcards or practice ways of familiarizing yourself with the Cyrillic alphabet outside of the exercises (and you get penalized up to five times for wrong answers before it won’t let you practice anymore that day), meaning that learning a new reading/writing system can be overwhelming.

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For Japanese, I downloaded the app Mesmerise (just today) and started back at beginner to make sure that my base skills are strong. I probably could have started at a harder level, but I’d rather cement what skills I have and work up from there. It’s also very gentle and, in the case of learning kana (the phonetic Japanese “alphabet”), provides flashcard-like practice with the new characters. I notice that they also offer Russian and I may try using this to learn Cyrillic instead/allow me to tag-team my learning.

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For ASL, I had some success last year watching a series of YouTube videos called Learn ASL in 31 Days by Rochelle Barlow. I believe I made it to Day 20 and, with a few repeats of the videos each day (and sometimes going back and re-watching the ones form the previous few days), I felt like I was making steady progress. To get the basics down, I’ll probably return to this teaching tool.

Brain-Training

I choose to study languages, not because I’m good at them (I’m seriously not), but because they’re a challenge that I also enjoy. I know that math and logic puzzles are supposed to be great brain training and exercise, but they make me so completely miserable that I’m not sure the trade-off is worth it. I’m also one of those people with math anxiety from childhood that never went away and – true story – I can barely subtract in my head and cannot divide numbers mentally pretty much at all. It’s bad.

So, every night, right before bed, I do a few language lessons. And when new, long words pop up in Cyrillic, I’ll swear and ask my phone, “Are you kidding me?” but I keep going back for more.

Living With Dying

“Well, it’s not cancer, so you have nothing to worry about.”

Um. Yeah. No.

Among other things, I have endometriosis. It’s a disease that affects the female reproductive organs and can cause pain, infertility, and nerve damage. The quick version is that the lining of the uterus starts growing outside of the uterus and can bind internal organs together and attach to nerves, causing permanent damage.

I have a lot to worry about. I’m in body-wide pain 24/7, have problems sleeping because of it, am exhausted from the fatigue that comes from constant pain, and have flare-ups in pelvic pain so severe that they land me in the emergency room several times a year.

Nobody gets to police how the sick get to feel about their own bodies.

Nothing to worry about? Start with insanely expensive insurance, PTSD-like symptoms from the pain cascade in the brain, daily medications that keep me functioning and alive, the cost of said medications, the side effects of said medications (drowsiness, weight gain, mental slowness, loss of coordination, nausea, depression, anxiety, osteoporosis), weekly doctors’ visits, surgeries, hospital stays, insomnia – and somehow I still have to hold down a full time job and pretend that everything is okay.

It’s not cancer. Fine. Good. I’m grateful for that. But just because it won’t kill me in 6-12 months doesn’t mean that it won’t rob me of almost everything  that I was supposed to have as a young woman. The life that I was on course to have is gone. A large part of me did die. And forgive me, healthy people, but I am not yet through mourning.

I may never be.

Bloom and Fade

Perhaps my favorite story that I’ve ever written, Bloom and Fade has appeared in the Trapped Tales anthology as well as Wizards in Space Literary Magazine. I want to share it with you here because it seems to resonate with people – and I love to share what I’ve done with the world.

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Art by Giuseppe Cristiano

“Thought you were never coming back, Shayna,” Jackson says. He steps in close and I see that his bad eye has gone strangely milky since I last saw him, what – six? Eight months ago? It’s so easy to lose track the longer we all go on.

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New Beginnings

2016 was not kind to me. Medical crises, surgery, abuse, divorce, and my mother nearly dying. Honestly, I would take a mulligan on it if I could.

But you know what? The divorce, at least, was the best worst thing that ever happened to me. It forced me to strike out on my own and see just what I could do – and it turns out that I can do pretty okay so far. My life hit rock bottom in July 2016 and didn’t start getting better until about December. Since then, it’s only going up from there. Sure, it had nowhere to go but up for a time there, but it’s really improving now.

I’ve got a new job, my beloved birds, a cute apartment, a wonderful support network of friends, and the love of a family that believes in me. I’m going to be okay.

But I wasn’t okay for a very long time.

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The thing about emotional abuse that most people don’t understand is that it is insidious. You so often don’t know that it’s even happening because you’re being gaslighted and manipulated into no longer trusting your own instincts. For years, I was treated like I was only worthwhile when I was bringing any money into the household (no easy feat when you’re disabled and in pain all the time) and even when I did, it was somehow not good enough.

My partner never believed in me. He stopped emotionally supporting me at some point – and I was so busy denying that things were bad that I don’t even know when that point actually was. But I was all alone in my marriage for a long time and it ate away at me like a gnawing worm in my core.

He didn’t believe in me as a writer. He didn’t seem impressed when I completed a project or got something published or learned a new skill. I could never be good enough. Maybe if I had been healthy, maybe he could have loved me. But I wasn’t and nothing can change that. We had already agreed that a divorce was imminent.

When he snapped one night in July, he hurt me in a way that can never be repaired or forgiven. There was no going back from that point – only forward and upward. There was no longer a single thought in my mind of reconciliation – which is good. That was not a relationship that was healthy to be in. I’m almost grateful for the turning point because it meant I would never be tempted to go back to him.

And now? Now I’m almost free. I July, I will be able to close that chapter of my life and begin to write the next one. The better one. The one in which I thrive.