Tag: 2018

13 January, 2020. Two years, four months gone.

Two years, four months.
It hasn’t gotten any less than this. Has not eased up.
no.
Has intensified,
solidified.
And that, I believe, is a good thing. Yes.

I’m fairly astonished that I had this much clarity only four months out.
In fact,
I am damn sure that this was my brain in ultra survival mode.

It is exactly the entirety of my body
my psyche
my soul.
It is exactly what I have been settling into for the past
eight hundred fifty-two days

no longer so foreign so
alien.

I am learning how to meet people where they are
and also to recognize that no matter how much love I have for someone
how much hope
sometimes it just isn’t enough to be sustainable.
not without harm.
I don’t want to be in pain over love anymore.
I can’t.
I won’t.

It begins again. 7 September, 2019

The difference two years makes.

The girl on the right has no idea that a few hours later, she’s going to watch her husband get his life saved by his defibrillator/pacemaker right in their living room. She has no idea that the trip to the emergency room that night will be the last time she takes her husband there.

That it is the last week on this planet for her husband.

The girl in the middle, a year out from that night, operating on sheer mania and lack of sleep. Fucking up everything, it seems, though people are quick to tell her, “no, no.”

The girl on the left, today. I honestly have no idea how I’m even breathing but for the unending care and tenderness of some truly spectacular humans. Still fucking everything up that isn’t life-or-death and refusing to give a single shit about it any more. Loving deeply and intensely with no regard for those who fly too close to my flame and get burned. Indulging in ink and sex and cannabis and embracing everything good. Dismissing anything less-than.

I no longer settle. I no longer feel less-than.

I miss you more, Gary. I miss you so goddamn much.

I have so much to tell you.

What a difference a year makes. 7 September, 2018

side-by-side photos of myself, one year apart.
7 September 2018 / 2017

The girl on the right has no idea that a few hours later, she’s going to watch her husband get his life saved by his defibrillator/pacemaker right in their living room. She has no idea that the trip to the emergency room that night will be the last time she takes her husband there.

That it is the last week on this planet for her husband.
I miss you more, Gary. I miss you so goddamn much.

This is me, twelve months ago today, mere hours before the very last car ride to Westchester Medical Center with Gary. I was feeling confident in the way I looked, not as confident as I do now, but confident all the same. We had made great strides in our troubled marriage, great strides to understand each other, to try and see and feel where the other person was coming from.

These past 12 months have been incredibly difficult, so hard, so unbelievably hard. I still don’t know what the fuck I’m doing, how I’m going to be able to survive the rest of my life.

What I do know is that I was as strong as I possibly could be for him, for us. I remember everything that happened as if it happened yesterday. The sound of him coughing from the living room, attempting to avoid being shocked, attempting vasovagal maneuvers is etched into my memory as if it were in the next room right now.

The girl in this photograph is at work, feeling cute, wanting to remember how she looks for the future, when maybe she doesn’t feel quite as cute or as confident.

The girl writing this now is getting ready for work, not feeling confident at all, but knowing that she has to get through another day. All the days. Until she can’t anymore.

3 September, 2018

Missing my husband something fierce. 
It’s coming up on a year since he died at age 46 from a pulmonary embolism and I am still no closer to knowing what I’m doing. 
He remains the smartest man I’ve ever met. And he loved me; finally began to understand me that last year, especially those final six days.
From 2002, on the bleachers at Harrison High School. 

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.