Category: Uncategorized

work/life balance. 30 August, 2018

I will say something here about the differences in the way that two separate work families have treated me when it came to me needing to be away to take care of my husband.

My current work fam, the literal best I’ve ever had, when confronted with an 11pm text the night before a worknight that said, “hey, I’m with Gary at the ER, he got shocked last night and they’re admitting him and I have no idea what’s going on and I really don’t think I can make it in tomorrow” responded with grace and care. “Yikes! No worries, take care of Gary and just keep us updated when you can. Don’t worry.” I ended up taking off work from September 8 – October 2. I mean, it’s a 30-hour a week “part-time” job so I didn’t have sick pay but still. Zero issues. When I did go back on October 3, my boss was lovely and solicitous and said, “You can take as much time as you need.” I can’t afford to, I said. No life insurance. No nothing. Everything is on my shoulders, now.

The workplace I thanked in the attached post, well that’s a different story. I was blamed for spending so much time away from work. Blamed for attending to my husband in what was up until that point, one of the most terrifying times in his life. Belittled and shamed for insisting on being with him. Made to feel as if they were doing me a favor. That workplace never made me feel valued as a human with a life beyond their doors. Not ever.

So here’s the thing: if you find a place to work that doesn’t value your health and well-being and that of your loved ones, find any way to leave for a place that does. The added stress of feeling like I needed to cut time short with my husband IN THE MOTHERFUCKING CORONARY CARE UNIT led to more problems for us and made me resent going to work every day and trying to manage to give a shit. It’s difficult to want to help overmoneyed couples with their wedding invitations when your own husband is gravely ill and more than anything else? Needs you and your care. But you desperately need the $14.65/hour and shit health insurance they provide.

So when I get to work tomorrow, I’m going to hug my coworkers. Write a note to my boss. Thank her for really making me feel like I am valued. Like I am family.

Because I am worthy. I am valued. I am family.

From 2014:

Gary has eaten lunch from Mint, snuggled kitties (very delicately), watched a bit of tv, napped, and showered. We’ve ordered and are waiting for sushi, and are watching an episode of Mock the Week with Dara Ó Briain. The kitties seem very happy to see him; Mojo didn’t even hiss at the hospital smell.

He’s got what sounds like kennel cough, ostensibly from the three hours on a BiPAP machine with no humidifier from Hudson Valley Hospital.

Other than that, he’s got Lipitor, Sotalol, and some Tylenol 3 for later.

Thank you Amy, David, Alex and Valerie, and Carol and Craig, for coming out to visit. Thank you Lynn, Philip, Uli and Jennifer, Alex and Lera, and Dan and Laura for the Google Hangout chats, video and otherwise. Thank you *everyone* for the support and well-wishes that you’ve shown me and Gary this week. It has really helped to keep our spirits up during an excruciatingly difficult time. Thank you Maria, Shay, and my staff at Paper Source for pulling together so quickly and efficiently and allowing me to be by my husband’s side while he’s needed me so much. I’m looking forward to being back at work Tuesday.

With much love,
Lysa

29 August, 2018

I still have the socks I knitted for Gary, that first pair of hospital socks. Like everything about my husband, writ large. He had self-described “Hobbit feet”; size 10.5EEEEEE. Kinda like having tissue boxes for shoes. I had finally convinced him that handknitted wool socks would neither be itchy nor uncomfortable. I let him put ones that I had knitted for my ownself on his hands so he could check. He never trusted implicitly, never believed anyone at first glance because you know, he was smarter than everyone else.

The colorway I chose was called The Audacity Of Hope. I bought it during President Obama’s 2008 campaign, part of the money from my purchase went towards the campaign. We were audacious for hoping, audacious for thinking that this could solve our problems. And it did for a while.

The Audacity of Hope, gorgeous #bfl#bluefacedeicester #handdyed #superwash #merino#wool #sockyarn from #blackbunnyfibers soon to be made into #handknitted #socks for my husband.

28 August, 2018

I’m having a really hard time. 
Four years ago tomorrow, Gary got his defibrillator/pacemaker. Four years and fifteen days later, he didn’t need it anymore. I have it, now. It’s sitting in my kitchen, atop the box of his cremains. Its alarm fires every four hours, thirty-four minutes past the hour. It has lost three minutes over these past nearly twelve months.

He never liked celebrating ICD Day; at his core he knew that the average lifespan after ICD implantation is seven years. Never mind that he was only 43 years old when he got his and the average age of implantation is mid-seventies. He knew this and still, it mattered not. And with so very many things, on this final thing? He was right.

I know he’d much rather have been wrong. I wish he had been, more than any other thing I wish he’d been wrong about.

From today, four years ago, a still-hopeful, still-scared two of us.

And now there is only one of us.

From 2014:

So this is where Gary and I have been since Tuesday. My husband has a great big heart which likes to go on adventures without asking permission. He had an electropulmonary study this afternoon which surprised the doctors in that more than one arrhythmia came to the dance party. So ablation/cauterization came off the table while Gary lay on it. He’ll have his ARC reactor installed tomorrow and with luck, he’ll be discharged Saturday (it’s really a defibrillator but I’m dying to make him an Iron Man costume).

There is basically no cell service whatsoever in the CCU, so no phone, SMS texting, voicemail, etc. The WiFi works like a charm though, so anyone that wants to hit us up on Google Hangouts is welcome to do so. Even video! It’s like FaceTime Android-style.

More Than Two. 25 August, 2018

More data is always better. Telling is always better. Being told is always better than finding out, discovering secrets. Especially when there are such deep truths that once uncovered, need the light of day, need to breathe and be nurtured. Knowing is always better, even when the truth seems impossible, unwieldy. Polyamory is real, is valid.

To my partners; past, present, and future: the answer is always more data. It is why I always present my self in my entirety, the whole ride through Adventureland: my pitfalls as well as my heights, my topography and menu, my as-yet-unknowns. No unwelcome surprises, nothing unexpected, yet there always is the promise of much to discover. While I am complex and sweet and tantalizing and addicting, you will always know where you stand with me. Always.

If you recognize yourself, this is for you. If I love you (and I do) you can tell me anything. Everything. Always.

Read the words. Listen to the music. Read the book. Accept yourself as I have. Love, and love more.

24 August, 2018

It’s finally cool enough and dry enough for a godsdamn cup of coffee in my backyard before the rest of my day begins. Thermostats in the house haven’t read below 80°+ for months.

On a more serious note, with the cooler, Autumn weather comes much more clarity and sanity, as it always does. It’s amazing and terrifying and a lot of not-fair feeling. And sometimes, sometimes has me thinking that I should do like the snowbirds do but instead of fleeing the cool weather, I should fly towards it; live in places where it’s always autumn and winter. But then I would never get to see the cherry blossoms and that just makes me too sad to think past that initial thought. The Kanzan Sakura that Gary and I planted in our tiny, yet fairly private backyard. The Weeping Snow Fountain we planted in our equally tiny front yard.

This heat, this homicidal weather, this constant barrage to my bipolar brain from the outside in, it conspired with so much shit already going on right around the eleventh thirteenth. So much so that I found it impossible to process a bit of writing on or even near the day.

Things are clearer, now. 
Relationships are clearer.
My brain, clearer.

So for beauty, my kanzan sakura and my weeping snow fountain and every other sakura blossom that gives me strength, I stay in New York.
And if I remember, perhaps when I get home from work tonight, I’ll spend a little time enjoying hammock life.

reflections. 6 August, 2018

This is what fifty looks like. 
This is what a widow looks like.
This is what bipolar disorder and chronic pain and grief looks like.
This is what an artist looks like. A potter, a printer, a spinner, a knitter. The smartest girl in the room, almost always.
This is what a cisgender, heteroflexible, polyamorous woman looks like.
This is what a woman who loves, is in love, and is loved in return looks like.
This is what the day after the day after a major depressive episode looks like.
This is what finally being comfortable in my own skin looks like. This is what the beginning of accepting that I deserve to be treated with love, care, and respect looks like.
This is what not taking anyone else’s shit anymore looks like.
This is what broken and damaged looks like.

This is what healing looks like.
I am perfectly imperfect. More beautiful for my flaws.

Gary, I wish you could see me now. You would be so proud.

“…though she be but little, she is fierce.” WS

4 August, 2018

I am just so tired.

I am tired of everything. Tired of sleeping. Tired of waking. Tired of trying. Tired of being.

Tired of all of the upkeep that this requires. Tired of dragging myself through every goddamn day one after another. It is exhausting and I don’t know how much longer I can do this.

I know that right now I am experiencing a massive depressive episode. And just trying to keep my head above it that is killing me. I am exhausted and I just want it to stop.

Here I am once again, in the car. Going to work. Showered and dressed. Looking fairly presentable. dictating this into my phone because I know if I don’t get it down I’ll forget it and I really don’t want to forget this. I need this out.

I’m not always like this, really I’m not. I say this to try and reassure myself, others. Does anyone even believe it?

Kindness is painful. Instead of soothing, it pinches, bites, stabs. It doesn’t do anything it’s meant to. It’s meant to relieve, to destress. And all I can think is that I am unworthy. I know that I am not but it’s all I can think. I know that my brain, one of my favorite parts of myself, I know that it lies and I know that it wants to kill me. I know that it is trying very, very hard to do this. And I am tired, tired of fighting it.

I need a break. I need things to stop piling on top of me. I just need some time. I haven’t had a break since the two weeks I took off work after Gary died nearly eleven months ago. That two weeks that I did nothing but sit in my house and cry. I’m taking I’m taking the second week off in September, the same week that he was in the hospital I’m taking off work because I cannot imagine dealing with other humans. But I need a break. Or I will break.

I am already breaking, broken.

Teaz’ka. 27 July, 2018

Anyone who knows me knows that I am not religious, superstitious, particularly concerned with any sort of luck, or Karma. I believe in coincidence and hard work, not fate and destiny. I believe that things happen. I believe that they happen not for a reason, but just because they happen, that we can push things in one direction or another, that we can make things happen, that we have free will.

All of the above being said, I don’t remember the last time that Teaz’ka had a seizure. It’s well before Gary died, and every time I’ve gone to mention it, every time I’ve gone to say “well, he hasn’t had a seizure in X number of months”, I stopped myself. I don’t say it. That second grader inside of me who heard ghost stories at a sleepover and is worried that I’ll now be followed home by a scary, creepy doll, that part of me is worried about “jinxing it”.

So at about 6:15 this morning, before my alarm went off and after only about 3 hours of sleep, Teaz’ka had a seizure on my lap while we were both still asleep. Mojo got up, concerned, and I woke up, took off my CPAP mask, and stroked Teaz’ka’s fur. I soothed him, calmed him, talked to him, kept him from falling off the bed, kept him from scratching me. He finished seizing, was going into the post-ictal state, and then he began to growl. Another seizure. I kept stroking his little, tense body, murmuring to him that he was okay, held him. He came out of the second seizure more quickly than the first, eyes wide, meowing loudly. I scooped up the blankets and top sheet to launder after I get home from work tonight because I have a first chiropractor appointment before work this morning and can’t afford to dump these in the wash and leave them there for 8 hours to mold.

The little dude is pretty much all calmed down now, having marched around in circles for a while, checking to make sure all his stuff is where he left it as he usually does after a seizure. He’s had stuff to eat, some water, even. I managed to get his pills down him, and he’s purring loudly. His pupils aren’t completely dilated anymore, he’s much calmer. I’m not worried about leaving him alone while I go to work.

A beautiful black cat with golden eyes
Teaz’ka, post-post-ictal state, settling down

24 July, 2018

This is how I know it’s bad.

Even music isn’t soothing to me now. I would say that it’s not fair but nothing is fair. Nothing. No thing.

Yesterday, during an incredibly stressful and dysphoric day at work, I asked for what I needed. And got it. Some desperately needed TLC. Care and aftercare. I came home, stayed up way too late doing god-knows-what, went to bed. Felt awful for wasting what had been an extremely healing experience. Went to sleep.

Woke up feeling wonderful. Took care of the kitties, had coffee, showered. And then everything turned. Every good feeling gone. Disappeared. Swept away. Concentration and focus are impossible; my mind is subsumed with feeling guilty about the way I comported myself yesterday. Wanting to get back into bed and stay there, indefinitely. Didn’t.

Managed my way into clothes and out of the house, forgetting the lunch so carefully packed for me. Forgetting a water bottle. Forgetting myself.

It doesn’t end, this. It just hammers on.