Trying to accept reality 7.16.19

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This photo of my dad and nephews was taken and posted on my Instagram on May 5.

He was gone 8 weeks later.

That’s how “fine” he seemed up until late May when his lungs gave out and he spent a week in the hospital. I found out later that he had only a 3% chance of coming out of the hospital that time. Of course, he’d be in the 3%.

He was still working, walking with his buddies on Tuesday, spending time with the kids, running errands with my mom for most of May.

He did all that WHILE HAVING STAGE IV LUNG CANCER.

That’s how fucking strong the guy was.

So it’s a bit challenging for me when people don’t understand how a person can walk around doing so many things like I do, or he did, and still be gravely ill.

You can run errands and be dying at the same time. Sad, but true.

Certainly, his fitness routine kept him out and about longer than most patients that are at this point in their illness.

However, it stills serves an apt example of how someone can be so sick, but look just fine.

For me, there was nothing more terrifying than hollering this winter about how bad things were inside of me and people acting like I was being dramatic or exaggerating.

These are both very able-ist things to do. I’m still learning about ableism - the discrimination of the disabled - I have a loooooong way to go. There are so many nuances to each disability and there is a very wide range of disabilities.

My dad would have been considered medically fragile, for sure, and probably even disabled with his missing stomach, most of his colon gone and then part of his lung.

But that didn’t stop him from living his life until the very end.

I wish…

So many things.

I wish I could go back in time and do so many things differently. But would he have just left us a little later? Is it better for HIM that it went quickly?

I think so.

I remember when he got the news that the cancer was bad - the same day I had my colonoscopy, which thankfully came back clean, though I do need to follow up with my doc about the redness he saw in my stomach, for others that would probably be a major source of worry and focus, but I always have so much going on, I can’t afford to do that unless there is a solid and urgent reason to give it attention - he sat on his little couch that I shared yesterday and made phone calls to all of his friends to let him know he was dying and to say goodbye.

That’s how practical he was. “Yep, the cancer is killing me” we heard him say.

My mom and I were both wide-eyed in the kitchen, scared and uncertain of how things would play out.

He was dead a week later.

I’m going to skip my IV vitamins this week because I have two big appointments tomorrow and Thursday. This always makes me nervous but I tend to go only 2-3 times per month due to things junking up my calendar. It would be so much easier if I could give myself them at home! I’m so close! But I’m scared it’s going to take forever.

Sigh….

I should clarify something I wrote about yesterday since these days, it’s important to do that and I never know when I’m not going to be able to write in here for awhile. Or, you know, ever.

My Bestie, who I jokingly and lovingly refer to as my wife - is married in real life to her husband who she’s been with since we were all 18 years old. He tolerates our long-ass phone calls like a champ, that guy! But my joking is not based in anything real, we have a very typical bestie friendship and have since we were very little. We’ve been friends since we were 7 years old but we’ve always wanted to be related!

When her dad started dating my brother’s best friend’s dad when we were about 13 years old - the “greek god” guy who sweetly showed up at the funeral, shit I almost typed wedding, I wish it was a wedding - we got all excited. I remember which phone I was on! It was in the treadmill room on a phone that I only just recently removed from the wall. My dad got very upset because he pointed out that it was the only landline that wasn’t cordless in case of a power outage.

Hmmm…good point Dad. Though, I think these days, a problem with wi-fi would likely be a bigger problem. I worry about that. The grids…

Anyway, we got all excited and said to each other: omg we’re finally going to be related! We’ll be cousins! No, wait, we’ll be…

And both at the same time, said: just friends.

So my joke is based in a long-standing wish to be actual family, and this way, she knows that I think of her as family, because she is and has been for a very, very long time. I have very few memories in my life that don’t include her in some way! We used to have sleep overs all the time as kids, and later as teens, where we’d be huge dorks and eat frozen cookie dough (never liked dough, I have no idea why I went along with that one, damn peer pressure!) and walked to 7-11 to pick up more junk food.

She was the youngest and her two siblings were out of the house a long time by the time we were in middle school. I LOVED her empty house and spent as much time as I could during middle school and high school. Our house was always so chaotic (which of course, she liked). Her mom went onto live with the dad of my friend, so that house was eventually sold. But damn, lots of memories there!

I still can’t believe that river story came out of me yesterday, I guess Death will do that. Draw out old stories, old scars, old memories.

The reason I rarely write about that time in my life is because there is so much context and each vignette connects to a larger part of a complicated story. Not just with him, but with several storylines from that era of my life.

I feel like if I start unraveling one story, I’ll lose track of which thread leads to where. Most of my classmates in my writing class were writing memoirs, and I get now how complicated it can feel. Where do you start?

Who do you share as part of your life story? What is fair to share?

It’s been so interesting to reconnect with old friends due that have shown up since my dad passed - I forget how many of my peers knew him and had their own relationship either through business, sports, the JCC, or some other connection.

I’ve loved it. It’s been awesome to “feel” the community I grew up in.

It’s going to take a village. I’m so tired all of the time. I fell asleep for hours yesterday, well into the evening, and was still able to fall asleep at 1am, though I did wake up for a couple of hours. That’s not atypical for me. I just lay here and hope I can fall back asleep.

My body so tired, but my brain active - it’s been the bane of my existence for as long as I can remember.

I used to be an excellent sleeper!

Bestie’s mom would find it so odd, because I would sleep until noon, even at their house. She’d ask: you sure she’s ok and Bestie would just laugh and say yes, she just sleeps in.

It wasn’t until my thirties that I developed insomnia. It was when I got that Director job in New York City, and there was always so much to do, especially at the beginning. I’d have trouble turning my brain off.

Oh! I just remembered an idea I had! There are meditation classes - for free - right near my house on Tuesday evenings. I took a photo of the flyer awhile back, then hung a post-it on my bathroom mirror for MONTHS. That’s how I get information to be stored in my long-term memory. And it works!

It came to me while I was falling asleep last night, I have a free Tuesday evening, which is uncommon, so I thought maybe I could go tonight.

I need something like that in my life, something calming for the brain. I didn’t make it to improv last night, I couldn’t get out of bed all day. I’m even tired now, though it’s hard to say if it’s my regular fatigue or if I get low energy from eating too little because I was forced to lay flat for so many hours.

This brain. So hard to shut off. It’s hard to not think about my dad.

I can’t believe he is gone. It’s not surprising to me that I’m having even more trouble sleeping now than usual. I rarely discuss going into menopause at age 42 but it’s taken it’s toll on my sleep the most. Thankfully, I’ve got my hormones mostly lined up.

Every once in awhile, a doctor gets nervous about the hormones since I had ovarian cancer, but I always tell them: this is a quality of life issue for me and my ND is managing my levels, and I’ve sourced all my hormones very, very carefully.

For example, my ND checks to see what my levels of ESTRONE are, not just estradiol. Estrone is the version of estrogen that can lead to cancer. More on that another day.

I’m careful! I’m as careful as a person can be though I shouldn’t have taken the oral estrogen pills for so long. I should have moved to the patch a long time ago. I wasn’t absorbing those pills for far too long so maybe that’s why they didn’t hurt me.

I keep meaning to remind people that if I’m crying on the Internet, to remind me to get my estrogen checked. It’s almost always synced up - very low estrogen and not feeling like I can continue on and being super depressed.

Unfortunately, I can’t blame the estrogen these days.

Bestie and I have a little plan to get out of town, but between her kids and my health, it’s not been easy even to find one night. So many variables. It’s a lot of work for me to go out of town for even one night! Maybe we should try for two, I don’t know. I don’t know what I can and can’t do.

I don’t know anything. I feel like so much of my world view has been wrecked. The river analogy is such a good one, I’m almost annoyed that it got side tracked by that story. It’s weird how the words just come, and I’m typing and feel like I can’t stop them for writing a story I didn’t know wanted OUT.

If anyone is following a good majority of my writing and stories, it appears as though I share so much.

But I know the truth.

There is so much I have not shared, from different areas of my life. I summed up an entire five years of working at that director job in only one story when really, there are at least twenty? More? The partying that went on during that time in my life alone could cover…shit, I have no idea.

I tried to review party stories with one friend while she drove me to an appointment recently. Between the two of us, we could only remember a few even though I know there are way more than that!

It’s partly why I like to record so much of my life here now, if only I had some better stories besides my dad dying and my body breaking down! I do want to write more life stories. I want to write stories about my dad, which I can feel are coming.

I have all these great photos of him throughout his life now, that I have digitally stored. I love that. It’s been a dream of mine to archive all of my life photos and family ones too. Thankfully, I could probably have a young person sit and take photos of a few hundred in a matter of a couple of days, and get them all online.

Maybe it will happen.

Maybe something bad will happen instead.

When I reread these posts trying to make sense of how and when my dad started to get so bad, I felt so so relieved that I had recorded so much of what was going on. It helped me piece it all together and helps me process it.

Maybe that’s why the old stories want out. It helps me process things that I buried so long ago. Maybe my therapy over the next couple of months will be in the form of storytelling. My dad now, though I will have to see if other stories come out.

I don’t want to get into certain eras of my history. Yet, if I share my medical story, there is so much tangled up in THOSE stories. I think I mentioned that I have an entire outline, and recently, I even matched photos to each story.

It’s ready to go.

But so many of those stories are baked into the other things going on in my life, whether it was those relationships when I was young and was dealing with inflammatory bowel disease. Or explaining how I was first diagnosed right after partying in Mexico in 1989 (and no, the partying didn’t cause the disease, it was already there, but it certainly made the symptoms a lot worse). Or, the stress I put myself through while trying to publish my cookbook. Or my psychological state when the melanoma happened.

How do I tell those stories, without revealing more context around how those medical things arrived in my life. I don’t blame myself for getting sick over the years.

That took a long time though. When I started researching healing my body in my twenties, I had to go through a very painful period of self-responsibility and recognize what I was doing to at least contribute to the onset of symptoms. Whether it was my emotional well-being or what I was eating, those things are part of the story. But I now recognize that it’s ok that I’ve made mistakes or was struggling emotionally and it may have manifested in my body.

Because if we recognize how we are part of the problem, then we can begin to heal the problem.

Something America is going to have to learn the hard way, it appears.

How do I tell my real life story?

I realized later, hours after I posted yesterday’s entry, that it sounds like the river accident caused the break-up.

It hit me how easy it is to rewrite history. A dangerous tool that can be weaponized, as we’re all seeing on the Internet these days. No publishers in the way, we can all write our own stories and narratives to highlight whatever it is we want.

I’d like to be as honest as possible in my writing. Though I probably often fail. It’s why writing can be so powerful, though. Because sometimes we NEED to rewrite a narrative. For example, I can decide that I wasn’t an unlovable woman in my twenties, but instead recognize that we were all just immature kids trying to figure things out.

Now that the oldest is nearly out of high school, I realize how incredibly young I was when I went through so much heavy shit! I was a child. They hate being considered kids still, of course. Teens that age want to think they are adults.

Sigh.

It was not the accident that led to the break-up, rather like lots of relationship problems, the river merely exposed the cracks in the foundation.

It’s especially tempting to rewrite history when the other person isn’t around to refute it. Sometimes I can’t remember if I’ve been somewhere in WA state, and the only other person who would be able to recall that is gone.

I keep needing things around the house, little things, man, was my dad the master of little things. He’d do all these small tasks that made everything go so much easier. The stapler and tape dispenser are empty in the kitchen now. It’s so silly, but I miss those little things.

I lived on my own for so long, I’ve been appreciative the past few years that he would break down the Amazon boxes and take them to work. Or, carry heavy things down the stairs for me.

It’s a strange thing, grief. I’ve experienced so much of it for so long, but of course, this is an entirely different grief than anything else I’ve ever felt.

He should still be here. Planning his bike rides. Oh man his friends and him loved their long summer bike rides so much. I want to write an official story about how after my melanoma surgery when I was NOT in good shape, we biked around the island together. It took me a full hour - it’s about 13 miles. There’s still no bike lane which is maddening. People come from off the Burke Gilman trail and ride around these winding streets like there are no cars that need to get by.

You can always tell the pros from the newbies, simply by the way they share the road.

Then there are the newbies in the fancy outfits with the fancy bikes who WISH they looked like the pros.

But their lame riding habits always reveal themselves. That, and the really hardcore riders often ride early in the morning when there are few cars. Not 3pm on a Saturday.

When we finished the bike ride, I was wrecked. I had put on a bunch of weight when I had the melanoma because it was in my leg and required three different surgeries spanning three months to remove the entire thing. I spent an entire winter on the couch - when I wasn’t working or hobbling around New York City with a cane, I was on that damn couch on 98th off Broadway - eating whatever I wanted.

It took me a loooong time to get in shape after that. I realized my dad was right: always stay in shape, even right after surgery, never stop moving.

I asked my dad: so how long does that bike ride usually take you guys?

He’d never answer things simply - except I’m realizing when it involves feelings or philosophy, then the answers are short and sweet - but anything else, there was always some convoluted answer. So maddening, but of course, now endearing. (Dad: how do I get to the stadium Well let’s see if you take this road, it’ll take you too far south, by the old Rainier factory, but if you get off on that exit, it may lead to the parking lot. DAD! Please just tell me where to go!)

Always mindful of coaching his out of shape comrades, he said very gently: about an hour… I beam, so excited I was able to make the same time AS MY DAD. And then he finishes the sentence: …for us to go around the island twice, he says with a sly grin.

I’m sure I was so annoyed with him but he gave me enough kudos for even doing the ride that I forgot about how slow I was. That’s why people must love being coached by him. He’d say stuff like that so subtle, so…not alpha like look at me king of the jungle, but in a very pragmatic and gentle way so that you knew you still had a looooong way to go before you’d come close to keeping up with him, but also somehow you feel badass for keeping up at all.

We were used to it. My siblings and I. Having a dad that was better than us at most sports and could kick our ass when he had 20+ years on us. My brother has some great stories of how his friends were in disbelief at how easily he’d kick their asses, even in their prime. I want to tell so many of them!

I don’t know how to do this. I don’t know how to mourn my dad. I wasn’t ready yet. I’m not sure anyone ever is?? He wasn’t sick for years, or even months, at least not in the traditional sense.

I don’t know how to do this next chapter. I don’t know how I’m ever going to do the next chapter.

But especially now.

And the outer world falling apart worse and worse every day. I feel so helpless. I’d usually be out doing something, hollering about something. Instead I sleep, and cry.

I’m going to have to make peace with having visitors come to my bedroom. Makes me feel like an old invalid lady, but it’s so nice to have some company while I’m laying flat - sometimes I just need to lay flat and rest this body, sitting doesn’t cut it, this is about 3 days a week these days. It’ll be good to have people come around.

I’ve been thinking about how I wrote about that urge to isolate. This is why writing in here is good. Keeps me honest, with myself. With others. I may even disclose it on Facebook and ask people to make sure I’m visiting enough.

It’s so easy for me to isolate. I lose track of how many days in a row I’ve spent on my own, or in bed.

It’s good for me to announce these things. Tell people: make sure I have you really come over! Make sure I don’t eat X!

I’ve been craving those awful trader joe cookies (which are quite delicious by the way, the only reason I call them awful is because I know they aren’t good for this body), but because I wrote in here how bad they are for me, I feel an extra responsibility to not get any more.

At least until I’m certain whatever has caused this recent painful episode has abated. I don’t know. I feel like they should be on the never list now. I stopped eating chocolate bars a long time ago. That was a tough one for me!

Now, I don’t crave them at all. I had some little chocolates at the shiva and was like: ok I do see why I love it! But I can get chocolate pudding or chocolate ice cream and still get a fix for that.

My problem is that I can’t seem to stop at one or two of the meringue cookies, which should dissolve just fine, even though they are dry. I’m too hungry. When I was drinking the protein smoothies - which I stopped because of the pain over the weekend - I noticed I craved less junk. No surprise there! Protein balances blood sugar so beautifully. One of many reasons I need to make sure my protein intake stays at a decent level. It’s been terrible the last few days.

Those trader joes cookies are sounding so good….

The crunch, however….that’s a tough one for me to let go of.

I looked for the main scar on my ankle last night, from the river boat accident.

Funny thing is: I couldn’t find it, at least without daylight.

My skin is the exact color of scars which comes in handy! Though, I sometimes feel like my story isn’t fully recorded on my body.

Most chefs have burn scars on their inner forearms. I’ve always been more of a cutter than a burner. Usually a food person is one or the other. I’ve cut myself and my fingers more times than I can count.

I have a gorgeous Japanese chef’s knife I bought years ago when money was coming in. Stunning piece of art and a utilitarian tool, my favorite combination. Practical and beautiful at the same time.

Like a garden that grows food.

My parents moved it at some point in the kitchen right after I bought it at a knife store in Kirkland and I “lost” it for years! When it finally resurfaced more recently (can’t even remember where it ended up being), I promptly sliced the top of my thumb nail and part of my thumb. Nice clean cut. But a doozy to heal.

I put it back in the cupboard after that for awhile.

I may be a little out of practice. The oldest loves that knife. He’s the one who is going to take the year long culinary course at another high school for all of next year and also do crew. I’m so proud but a little nervous about how he is going to pull that off! Both cooking and crew require so much energy! But I forget that being 17 years old means having the energy to do a schedule like that. I’m proud of his dedication. I will likely just give him the knife as a gift.

Anyway, I used to feel embarrassed because every once in awhile, a chef would comment on my scar-less arms. I’d tell stories of how I HAVE burned them, but the white on white scars don’t show.

They’re still there though.

The scars. We all have them. Inside and out.

Each one telling a story.

I’ve always healed well. My skin, that is. Other people would bruise for days or take forever to heal a cut. But my body heals quickly. I think it’s honestly why I’m still alive.

But now? Now that I can’t eat so many healing foods? Do I heal quickly now? I’m getting some veggie broth delivered from someone today. I’m very excited. Any new broth is an opportunity for my body to get some different nutrients. I’ve been worrying about eating the same things every day.

Unfortunately, I don’t know how scarred I am on the inside. The twists and turns of my digestive system, marred from the surgery, they haven’t figured out a way to image scar tissue. One of my goals is to find someone that’s invented a way - it takes SO long to bring products like that to mass market, there’s a good likelihood that someone has invented one somewhere, especially with technology advancements moving so fast.

The scars on my heart, of course, are even harder to determine.

What leaves a scar? And what doesn’t? Will the stories reveal the scars that I myself haven’t ever fully examined? How do we do it as humans? Have scars all over, inside and out, metaphorical and literal, and continue on?

When my mom and I looked through is phone for photos, we didn’t find much. He was not into me or anyone else taking a lot of photos of him. He was old-school - how I was before - and it embarrassed him to be the center of attention.

But I found one from 2012 where he took a bathroom selfie without his shirt on! He’s a much better photographer than my mom who chopped our heads off every photo from childhood. Before you start making assumptions about WHY he took a shirtless bathroom selfie, I looked at the date and figured out that he must have taken it right before he had the stomach cancer surgery. I did the same thing, back when I hardly took any photos of myself either, before my big surgery. It’s only being sick and feeling invisible that gets me to take the photos now. See me! I’m here! Don’t forget about me! I still exist in the world!

That and trying to figure out how to survive in this world.

One friend keeps calling him hot and wonders why I react the way I do. Does ANYONE want to hear that their dad is hot!? Handsome, ok. Attractive, I can handle. Hot…? Ok think it. But I don’t need to hear it! Nah, I don’t really care, it’s kind of fun to give her shit about it. People have said all kinds of stuff about my dad over the years.

He was 68 years old in the photo but looked like he was in his fifties. When I was healthy, we’d go to a NBA game or something else, just the two of us (he LOVED the Seattle Super Sonics, as did I, oh I’ll add that to the story list), I’d worry that people would think we were on a date. Like it mattered what anyone thought. We probably did! He looked so young for so long.

Maybe that’s what is best in the end: that he is remembered as this super tough, young looking guy who helped people all over Seattle and never, ever expected any accolades. I wish I was as humble as him. I want the validation and accolades! I totally admit it. I don’t NEED it like I think I did when I was younger. But I do crave the recognition.

He was more actualized than I gave him credit for.

He wasn’t much into academics - most of that comes from my mom - or art.

We both loved the same music though. He used to bop around to classic rock while he drove us around as kids. He’s not very effusive but damn, put on some Journey or Eagles and he’d be snapping his fingers and singing along like he was a teenager.

One day, he said: I love that Coldplay song Viva La Vida but I don’t understand the lyrics.

He was old-school. From the: she loves me yeah yeah yeah era. Simply, catchy songs.

I said: dad, it’s poetry, it can mean whatever you want it to mean.

His eyebrows furrowed, I don’t remember his response.

One time, I said a sentence, using the words, let’s see I said something about wanting the whimsical shower curtain to offset the austere gray tiles. I’ve rarely had an opportunity to design a room, but I’m quite proud of how this one turned out. It’ll probably take the better part of a year to finish the two new painted rooms, I’m so tired and overwhelmed so much of the time (I do need curtains! I love the light coming in but hate feeling like anyone can see me walk on the treadmill from the street at night).

He said he didn’t know what any of that meant.

His knowledge base was different. He could calculate anything in his head - I mean four and five digit numbers. He’d do this weird backwards math that none of us could follow. Well, maybe my sister who was a math major and took most of her classes at Columbia, since her actual school, Barnard didn’t have them.

I didn’t even UNDERSTAND what her homework was half the time.

His memory was legendary. He knew backroads all the way out of the city because he biked them so often. He could literally navigate me anywhere back in the day, before GPS, when it was just a clunky cell phone. He’d pull out his Thomas maps, which he loved, and start rattling off roads I didn’t need because he never answered simply.

If I asked him now: how do I do this without you, Dad? I want, no I need you back on the teeter totter, egging me on, showing me how it’s done.

He’d just say: you can do it. You know what you need to do. So just do it.

Simple. But true. I guess that’s the core of his life philosophy.

When I want a simple answer, he gives me a complicated one.

When I want a complicated answer, he gives me a simple answer.

Yup, that’s my dad Marv.

It will take a village to keep me going. I’ve got friends picking up my limited ingredients at random stores. I’m really working on developing a food wish list for my broth cooks. People are excited to try which makes ME excited to get it going.

I’m just so unmotivated. I did record a podcast about my dad dying. No idea what I said. Sometimes it’s better that way. As long as I don’t recall saying anything offensive, I’ll often just send it to my editor, and post it without listening to it. I’ve never listened to the Medical Trauma episode. Ever.

Too hard.

I should stop. I need to get ready for an appointment that I will have to drive myself to.

I could write about him all day long, and not get tired of it. So many stories. So many thoughts. So many feelings.

How do I do this?

He’d say: you just do it.

Dad Philosophy 101. Don’t overthink it - like I do about EVERYTHING - just do it.

Maybe a week before he died, I asked: are you scared?

And without missing a beat, he responded: No.

I said: good.

Twice in those posts in the winter and spring, I wrote that I felt like something very bad was going to happen. Before his coughing got bad. I told it to a friend from improv: I just feel like something really bad is about to happen. And the friend was so puzzled: why? Why do you feel that way?

I said: I don’t know, I just do.

I can feel it on the macro level about the world. Which, obviously, all of us can feel that now!

But this feeling during that time period felt personal. I didn’t know if it was going to be me or him. For a good few months, I wasn’t sure.

If he had a choice, I know he would have chosen for it to be him. Even though I struggle so much. And I’ve been open for a good couple of years that I’m unsure how long I can do all of this. Eat the same thing. Walk off stupid fucking eggs. Lay in bed for days at a time.

There’s an Adele song, can’t remember which ones where she says she wants to LIVE, not just survive.

That’s him, for sure. He would have hated living on the oxygen 24/7. So many men his age wouldn’t mind an excuse to sit on the couch all day, every day.

That would have killed him faster than any cancer.

I think it did.

But now, I feel like I have to live for both of us. Which is a good thing. I know he’d be confused as to why I’d even hesitate about whether to continue fighting or not.

You fight and fight, and you bike and you walk, and you go until you can not anymore.

That’s how we do it in the Negrins.

Until the very, very end.

-Jules