So much running through mind these days. It jumps from one fear to the next. One memory of my dad to the next. Round and round, over and over, images, pictures, him in the hospital at the end, him in the kitchen this past winter.
I felt Death all winter. I know this will sound strange but I’m writing it anyway.
He and I both felt the grim reaper or whatever you want to call it. It hovered for months, a shadow in the background while we prepared our strange meals.
His tiny versions of what he used to it. He had no stomach so he could only eat small portions. I still can’t believe he lived as long as he did, as well as he did, for nearly seven years after losing his stomach. He lost most of his colon in 2014 while I was going through chemo.
It was awful. I was stuck in San Diego - you can’t fly on an airplane while going through chemo because the white blood count is too low to fend off illness.
When the wound became infected, I had this dream that he died. My mom and I were crying with my friends down in San Diego. I was hysterical when I woke up and insisted my mom make sure the antibiotics were working on the wound properly. When it still didn’t go away, that’s when I figured out that he needed antibiotics through IV or shots because he wasn’t able to properly absorb the antibiotic pills without a stomach.
Finally, the wound healed.
So many near misses. I think I’ve lost count now how many times my parents have almost died. I mean legit almost died.
When my mom had carbon monoxide poisoning from sleep apnea in 2012 - right before they found my dad’s stomach cancer, THAT was a fun winter (sarcastic just in case that doesn’t read right), it was horrible. She almost didn’t make it that time.
She didn’t want that mask on her face. But she was so bad by the time I got her to the hospital - sleep apnea is defined by having a number, please don’t ask me what for, above 5 - hers was 91. The doctor said the highest he’d ever seen was 115.
I’ll never forget those numbers.
She was a vegetable. I remember her sitting in a chair in the hospital unable to talk or carry on a conversation. I thought she was gone for good.
The CPAP machine still hadn’t shown up. I went out to the nurse and said: where the heck is the machine, my mom can’t have another night without it. This was the Sunday of Thanksgiving weekend. I’d taken her in for a kidney stone on that Friday night and they’d given her pain meds. Apparently, those mess with the oxygen somehow?
They sent her home even though I begged them to keep her. I remember yelling after the ER doctor, wait, please do an ECK! I’m worried about her heart!
Both her parents died of heart issues.
He kept on walking.
The next day, at home, she wouldn’t wake up. When I tried, her eyes were all buggy and both hands were doing this attempt to snap is the closest way to describe.
Strokes tend to be on only one side of the body. But I didn’t know what else it could be.
My dad had been recording her sleeping for years and begging her to get checked. There were multiple seconds she wasn’t breathing in between each breath.
She wouldn’t go in.
By the time they figured out she had sleep apnea that Thanksgiving weekend, she was in bad shape.
I was so wrecked by two ER visits - which I did by myself. My dad wanted to eat his spaghetti and meatballs, how I remember this, I don’t know, but I had to get my mom in the car by myself the second ER visit. Nobody believed me that something was really wrong with her - that by Sunday evening, I could barely stand.
And this was well before my surgery when I was “healthy” whatever that means.
Medical stuff is incredibly draining, mentally, emotionally, and physically.
The nurse that I begged the machine from said: well this is what happens when people don’t take care of themselves, they get really sick in their 60s.
She says this and just stands there. Not so young or thin herself, I was like: so you’re not ordering the machine because she ate too many cookies all these years?
I didn’t say that but I was thinking it.
So I went around her and paged the hospitalist overseeing my mom’s case. I pretended like I was calling from outside the hospital and asked to have him paged.
He was like: oh oh yeah the order is in for the machine. It was 6pm on a Sunday.
I said: well it better be here before night time because I’m not sure she won’t stroke out or have a heart attack at this point.
He said: it’s ordered! It’s ordered.
A few minutes later, the nurse found me and gave me a hard time. She was pissed that I went around her. Nurses are the ones who are supposed to contact the doctors.
I was like yeah whatever I’ll keep my mom alive thank ya very much.
This was in 2012 well before the ACA. A lot of people don’t realize the law is actually called Patient Protections and Affordable Care Act.
A lot of the law implemented protection measures that didn’t allow hospitals / doctors to do lame shit.
This is why I started fighting for the ACA so hard so early.
I knew how fucked the system already was, and what it was like before the law.
I was toast by then. My brother had come to visit. He doesn’t need much sleep. He’s the kid that is always healthy, the lucky one. I’ve taken the majority of the genetic shit luck.
I said: you’ve got to make sure the machine shows up and then make sure mom keeps the mask on, ALL NIGHT. CAN YOU DO THIS TASK?
He said: sure yes I can do that. I’ll just work on my computer.
He does this until the wee hours and still can get up the next day and function just fine. I’ve always been jealous of him not needing much sleep. I can do a ton all day long, but I’ve got to have my 9 hours of sleep. I got that from my mom’s side! My dad also didn’t need a ton of sleep. He likes to go to bed early and get up at the crack of dawn. My mom and I are the night owls.
The machine finally arrived. My brother has a very soothing energy to him. Very calming, one of the few men on the planet who almost never irritates me. Don’t know if it’s just him or if it’s because he is one of the babies I helped raise. My male cousins are the same way. I also think they know how to not push me over the edge!
I couldn’t complete the mission without him. I had to go home and crawl into bed. I was on edge all night, but too exhausted to stay awake.
She kept moaning quietly and trying to take it off. He said he kept telling her in a soothing voice: mom you’ve got to keep it on.
Why am I telling this story? No idea.
Anyway, she kept it on all night. The next day, she was like a new person. Wait, why didn’t they have her on oxygen the day before? Maybe they did. Weird which details I can remember.
She was like a different person the next day. She was talking and able to eat.
The next night, she kept it on again and we were in the clear.
Now she loves that machine. She says she can put it on and the world falls away.
Team effort over here.
What if I’d been able to get to my dad’s doctor appointments in the winter? What if I’d been more insistent that he see an oncologist after the lung surgery? What if what if what if…
Nothing I think is going to bring him back. I didn’t even tell the story about how my dad had his stomach surgery a mere week after this episode with my mom. Thank goodness I was freelance back then.
Then a month later, my mom’s gallbladder got blocked and she had an infection throughout her whole body. The doctors told us to make arrangements for her death.
I stood at her bedside, grabbed her feet, with the palms of my hands on the bottom of her feet and said: you will survive this. Mom, FIGHT.
And she did. She is a tough cookie. The kind of woman who could have birthed 8 kids in Greece, and still worked the fields.
One friend pointed out last night that another family friend who passed away not too long ago, had nine lives. She said: your dad was like that. He had so many lives, sometimes you hit the 9th.
Another friend’s dad - and forgive me if I already wrote this one, my memory is whacked - your dad has been shot at for years.
A bullet finally got him for good.
I know! I know. I know. He’s luckier than most. He got a lot of good years. My mom and I him never had a desire to travel (no idea where I got my bug from, some family members travel for work a lot, but nobody likes to travel the way I do, with just a bag and hang with the locals). She said they lived exactly as they wanted.
That’s the thing about grief, I’m finding.
I can create whatever narrative I want. But other ones intrude and pile on top of the others.
He was robbed!
He was lucky!
He had a lot of good years!
His never got a retirement!
It’s a weird thing, discovering that as a writer.
We can write whatever narrative we want in our heads. Something I do too often. I know I’m sometimes creating a narrative that may not exist in reality. Shit, look at our country. Lots of people do.
That came up with someone who picked a fight with me recently. I was proud of how I stayed fairly calm through this one. At one point I said: if that’s the narrative you’re going to tell yourself, there isn’t much I can do to change that.
The person responded: oh so we’re living in two different realities.
This person voted for T fyi.
I said: yup. That’s exactly what’s going on.
It actually moved the conversation to a healthier more productive place.
I’m so tired of being tired. I made it to my dinner party which was lovely.
A woman from my mom’s generation, who is wonderful, but always always comments on my looks / body. Has for years.
The woman can’t help herself, even 2 weeks after burying my dad says AS SHE LOOKS ME UP AND DOWN (she will never in a million years read this blog so I feel it’s safe to tell this story) and says: “BUT you look good” which is code for “at least your thin!” Ugh, the “but” really bothers me. “Your life completely sucks but at least you’re thin!”
I had a doctor family friend say that to me a couple of years ago as I was freaking out about my diet shrinking.
“At least your thin!”
I got a bit short with this woman and said: I hear that but I just want to remind you that I’m really struggling right now, emotionally and physically, and it’s not much fun to look this way when I’m trapped at home so much of the time.
I shifted to my teacher tone as quickly as possible and said: I’m trying to educate people about how my outsides might look fine, but I could easily have happen what happened to my dad.
That wiped the smile from her face and she nodded seriously.
I know I’ve been so annoying these past couple of years. Hollering, hollering, hollering.
It’s because I’m terrified. I’m so scared at what’s happening.
And then it happened to my dad.
We both felt Death hovering. For months.
When he was in the hospital that time when his lungs gave out and he required 24/7 oxygen. I said: Dad you can pull this out! You’ve done it so many times.
He gave me the saddest look I’ve ever seen. I can still see it in my mind.
He knew. You can tell when your body is dying, breaking down. That’s why I was so upset this winter when some acted as though I was being “dramatic” when I said i was dying. I wish I was…I wish I was so much. I’ve GOT to get a handle on my case.
He knew. I think he knew all winter. I think we all knew when he was diagnosed with the lung cancer.
Never smoked a day in his life.
I took a photo of these workout pants because I’m finally giving them away. Until I lost my ass, I could roll over the tops and they’d stay on.
But still I lost that shelf part of my ass, they slide right off.
I didn’t get rid of a lot of clothes that were too big this entire time because I thought: I’ll get better, I’ll put weight back on and I’ll be pissed at myself for getting rid of the clothes.
Living in NYC for so long, I’m very good about getting rid of crap, especially clothes.
Now. I hardly go out. I have no job. But I do wear workout clothes a lot. I’ve known I need to buy new ones. But I didn’t. Because I wondered if it was worth it if I wasn’t going to make it much longer.
I bought new ones from the Nike outlet. I know that 4 year olds probably made them in Vietnam or something. Sickens me. I do want to get better about finding reputable companies.
For now, I need pants that don’t slide down every five seconds.
I don’t know how to convey to a thin-obsessed culture how upsetting it is to have my body go this direction. I’ve been working hard at rotating my coconut ice creams, puddings, and filler foods. I’m making a huge protein smoothie now for my first “meal” of the day which has helped with the hunger a lot. My integrative doc confirmed that the whey protein is a good source for me since it’s got complete amino acids.
Dr. H was the one who told me to do that.
He’s always right that guy. But it was good to get it confirmed by a second practitioner.
I don’t want to keep shrinking. I’ve managed to keep my weight stable. But my frame is still as it’s been the last few months.
I’m going to have to get over it and allow full body photos again. I’ve only posted a couple these past months, usually with clothes covering me up.
It just…doesn’t feel like ME. Regular sized boobs (which is FINE but still doesn’t feel like ME). My arms more normal size, which I’ve never had, even when I was running hard and boxing.
Then I think of my dad shrinking this whole winter. His muscles atrophying. That scared me the most. That’s never happened for him all this time.
I’m obsessively doing my counter push-ups now. I understand now his near obsession with fitness.
I can control it. It makes me feel like one thing I can DO that the medical world can’t TAKE from me.
But then they did it to even my dad. His calf muscles at the end….
Bony shoulders. Omg I can’t think of it. At the very end, his body literally shrinking in bed, from lack of oxygen…
Despite all that, I do think about volunteering in a hospice. I don’t mind being around Death. People can be super cool and enlightened at the end - not always - but often.
Not now. I keep wanting to rev some sort of project up. His friends and I discussing creating a race in his honor. Like my friends do for their mom. I love that idea. Raise money for Lynch.
But right now…my head. My heart. So heavy.
Damn this must be long. Why does writing in here always make me feel so sleepy?
The words no longer in my mind, running laps, are instead inside this computer. Ok small nap before I tackle the day. I actually have stuff planned which I rarely do on Saturdays because I’m so tired. And I did a lot yesterday too.
Sometimes it’s better to not feel the feelings. Feelings. Oh how I’ve tried to avoid them for so many years.
They find you anyway.
They always do, I’m finding.
There’s no way to outrun being human. Feelings. I feel them so deep.
My dad. He must have too, but grew up in a world where he couldn’t let them out.
I think of that tear that came out when I was saying goodbye to him. He had so much he wanted to say then, but couldn’t. I could see it. That’s why…
need to have a good cry