Crawling through the tunnel 8.30.19

I’ve been going back and forth with my organizer (Elise Hay she is amazing and open for business!) about which supplies to get. This has been a source of anxiety for a loooooonnnng time. How do I organize all my thoughts? Per platform? Or topic? Or medium? These notes all over the house, driving me batty. I found this contraption on sale and thought YESSSSS and NOW I finally have a system. Too many years. TOO MANY YEARS. She loves her label maker as much as I love them so once the categories are confirmed, it’ll look so good and I won’t have pieces of paper all over the place!

I’ve been going back and forth with my organizer (Elise Hay she is amazing and open for business!) about which supplies to get. This has been a source of anxiety for a loooooonnnng time. How do I organize all my thoughts? Per platform? Or topic? Or medium? These notes all over the house, driving me batty. I found this contraption on sale and thought YESSSSS and NOW I finally have a system. Too many years. TOO MANY YEARS. She loves her label maker as much as I love them so once the categories are confirmed, it’ll look so good and I won’t have pieces of paper all over the place!

After last weekend’s terrifying discovery - I’m still reeling it, “anxiety hangover” seems like an apt term - things are clicking into place. I’m wary, of course. Always wary.

But dang, I figured out an organizational system, I’m feeling ok about going out of town - which is a huge relief, I never know how I’m going to feel right before, I was such a stress case before that California trip last year, leaving my cocoon for any significant amount of time sounds scary these days but I can’t stay here, I refuse to have a phobia slowly creep up on me just like I refuse to become an addict (in full disclosure: I AM dependent on benedryl for sleep, I told my former California doctor who treats addicts, but thought it was an addiction at the time, he smiled and said that’s the one thing that you can’t get addicted to, you’re what’s called dependent, so I have trouble sleeping without it, but I won’t have withdrawals when I stop it, I’m looking for a recovering addict to come on my show, fyi, anyone out there? Anyone? - I said this week: I don’t want to get sicker and sicker and think, oohhhh I should have gone to my favorite place on earth (NOT Disneyland, have I mentioned here how I met a Versace model on the plane years ago to Orlando and CERTAIN FRIENDS MESSED IT UP good thing I LOVE YOU AIMEE GOOD THING, I completely forgot about that, Disneyland is so not my jam, we discovered it too late that her and I were not a good match for that amusement park, I get so much motion sickness, it’s ok our friendship has survived that incompatibility, I will definitely have to share that plane story some time, such a flying-out-of-new-york-city story).

Relief.

The wind is calm. The sky is clear. I’m looking around, nervous, always nervous. Too much trauma to not be nervous, but it seems this latest storm has cleared.

FUUUUUUCK that one was a doozy (the biggest? The worst? Will the worst EVER be behind us? Or is the lead-up to death always a challenging thing, how do we make death less scary and chaotic? These are the things I think about, especially since my dad died, the pain of that wound…not for today).

I fully recognize that another tornado could be on the horizon.

I’m just fucking happy that this past one has subsided.

Now. Left surrounded by the debris, exhausted from the stress, looking around to determine the new landscape. Ha I just saw a tweet come through where a little black girl tells fuckface that he is a disgrace to the world.

YESSSS say it sister. (black girl magic!)

These kids. How little foresight people have when underestimating children. As if they won’t someday be adults, and one day grow into the most powerful demographic with significant purchasing power.

So. Little. Foresight.

So the big epiphany that came through last night that’s helping me feel better besides finding out that I can somehow keep my intestines inside of me for the time being though I can NOT put off The Hunt for help, no, I should post that on FB lord knows if I only have the gossip girl readers and a few fans on here, asking people to help me be accountable. Growing myself can’t be the main focus - I have to keep coming back to the real focus which is staying ALIVE - pushing my story out further is merely the medium to get medical answers and to help others through their pain. The ego.

It’s so easy to let ego take the driver’s seat.

It gets to sit in the way, way back, facing backwards, maybe feel a little motion sickness, while the healthier side takes charge.

I haven’t shared the epiphany yet - see how freaking distracted I get?

I’m a health educator DUH. OMG why did this take so long to download into my brain and being.

For so long, I’ve felt like I lost so much, and kept asking myself WHO AM I NOW? I invested so much into my career - I forgive myself for this but I don’t recommend it now, hard lesson learned, keeping things more balanced in life, investing in human beings and community is crucial for so many reasons, the healthiest way to live, for sure.

Since I had that excellent education appointment - that’s how I’m looking at it now, the practitioners are educating me and then I can organize it for others - I love learning from them and this woman was particularly good at the education piece, not all of them are or will take the time, but generally PT is a field that’s good about this, just depends on if the patient and practitioner are a good fit - I’ve been thinking: ok so I’m going to educate people, like my PT, about something that nobody talks about, that’s in line with the podcast, that’s in line with my former career as a health educator and it all felt integrated after feeling separate for so long.

Hell I’ll probably have her on the show to explain how to properly poop - there are wrong ways to do it! I didn’t know little kids can do it incorrectly and that can cause partial relapse issues. Poor bunnies. Not everyone can get to this woman! She’s one of those rare finds, I’m lucky because I have lots of excellent contacts, and people funding it, and it’s Seattle with really, really good practitioners, IF you can find them.

I AM A HEALTH EDUCATOR. That’s what I’ve been doing for 20+ years - I’m just adding in pelvic floor health, pooping health - why can’t that be it’s own topic? EVERYONE does it - and sexual health and mental health and suicide awareness, this is who I AM - a teacher. I couldn’t change that if I tried.

We can’t heal until we understand what’s going on inside of us - on all levels. Damn that fucking HURT to get here. Morphing at lightening speed hurts like fuuuuuck.

But what a powerful shift. Reframing things - rewriting the narrative.

So much rewriting lately.

Shit damn fuck that was not easy.

It’s like I had to truly lose myself, in order to find my real self.

We really are there underneath. Just gotta dig through the untrue narratives, and the shame and the pain and the trauma and it’s like Oh yeah, I do health education. Who cares what people think about pooping, if they’re not into hearing that content, they’ll they tune it out. Not my target audience OH WELL.

I like to educate! And I’m willing to talk about uncomfortable things! That’s what I love to do. My topics aren’t just food and nutrition anymore, I have some additional topics!

Branding is more clear but still quite fuzzy.

OMG. What a relief.

I was folding laundry late last night thinking about how things were feeling more clear and my medical team is slowly coming together, and I thought: now if all my little white sports socks all matched in this load, then I know something has definitely shifted.

It drives me mad! How do I ALWAYS end up with an odd number of socks? This has baffled me my entire life. My mom puts all her socks into one of those mesh laundry bags because she refuses to deal with that annoying little aspect of regular life.

I like to live life on the edge. So I don’t use a mesh bag. I’m so wild.

I finished folding and there at the bottom of the basket, not one extra sock.

OMG.

WHAT IS HAPPENING.

What has happened to my mental outlook?

I don’t even know how much or what has shifted - I’m still sorting through so much of the wreckage - I only that it has shifted.

How am I seeing things from such a different angle now? Because so much shame was released when I shared my latest medical share? Sharing often does lower the shame, which is in large part why I share it - that and I’m hoping it might help one person, that’s what motivates me - but also the way that PT went over everything so jovially and matter of fact, I thought: dang, how sad would it be if I let shame get in the way of finding help, of sharing my content? Why would I HANG ONTO (yes I’m seeing the analogy to my health problems) to a way of thinking or interacting with the world when it will only cause me more pain? And could shorten my life?

Why? Why would I let shame and fear hold me back?

FROM STAYING ALIVE?

Ugh. UGH. Ok I need to let it go that it took so long to let it go.

It kind of defeats the whole purpose if I’m shaming myself for taking so long to shift!

I just hung up with one of my FAVORITE people. She is a very busy woman so I feel lucky when I get to have a great conversation with her. She’s a teacher in my old neighborhood in New York City. We talked about the differences in philosophies at schools. Apparently, some teachers aren’t into restorative justice even though the population they work with requires that mindset (or not, in their case).

I said: let me guess, they’re my age or older and white.

She said: YUP.

She is much younger than me, one of my millennial friends, not even an “elder millennial” which is a hilarious term - check out Iliza Shlesinge’s comedy, fucking funny, that’s the first time I’ve heard that term used and now some other friends and relatives have used it too. It’s so interesting to have two sibling - they’re really my cousins but they’re more like siblings because we grew up across the street from each other for so many years, baths, dinners, holidays, all of them were spent in each other’s pockets, cousins are a special relationship for sure - be millennials, I find it fascinating.

My old friend and I talked about the WHY behind this clash in philosophies at a school where you’d think they’d be more woke (why are they working in a school where the kids who are having trouble in high school go to HER school, some of the kids have double strollers, and they can stay until they’re 20 years old, I love it there, it’s an amazing place, the kids are so sweet, I’ve done nutrition workshops for the young mothers as a favor to my friend).

I said: let’s do a podcast on this!

We’re meditating on it. The right angle will show up. (see? see I’m thinking more optimistically than I have in awhile fuuuuuck that was a long road.)

Is it even worth trying to wake up a demographic that insists on staying asleep? How do they not see the tide is turning?

How do you wake people up that benefit the most from the old ways? How do you get them to SEE that they’re outdated? Behind the times?

I’m not an easy person to get my mind to change about something.

How do we do that for others?

I think that’s been part of the epiphany lately too.

Who cares if the picklebutts aren’t on board with what I’m saying and doing on the Internet?

They want to keep their head in the sand and pretend like all is well! So be it. I have to accept that this will be the case for a lot, let’s hope not all.

I’ve been the weirdo for SO many years, it’s hard to not stay on the defensive, and ready for a metaphorical hit. I also keep forgetting that so many people are seeing the bad things for the first time EVER and I don’t look so weird for saying what I’ve been saying.

I’ve always been seeing things a certain way, especially regarding climate change and corruption, so I forget that the zeitgeist is catching up, and that I don’t need to worry so much. It’s been such a challenge to choose what I should say when! Always asking myself: what are people ready to hear? How are they ready to shift?

It’s leftover from my days as a food educator. If I didn’t tap into WHERE the group or the individual was at, my lesson would become moot. I’d see it happen! I’d be talking and the eyes would glaze over.

Shit, I’d think. Back it up, slow it down.

Now that the planet is literally on fire and democracy is imploding left and right (apt terms), me saying hey concentration camps, kink, poly, racism, spirituality, poop, whatever isn’t so shocking anymore. Or maybe it is.

But I need to let it go, and realize that I just need to say what I need to say. How it lands is not on me.

I’ll take the risks. And see where the chips fall.

If I only have a short time left on this planet, why not speak openly? Why not use this voice to at least wake people up?

What a gift! What a gift to have this out in the open.

Ok my nurse is coming soon and a kid is coming to visit! A busy Friday for me after a busy week. I have decided to take that fluticasone ONE more time (ha! I’m editing now and this is reminding me to take, I just went and took it, this writing and sharing is helping me in so many ways, I can’t believe my friend has a list of therapists for me to try because I shared that I needed one on my podcast, what a gift) so that my trip is a little easier next week.

I haven’t taken it in over a week and feel so much better. It makes me so edgy! Like I need more of that in my life. So I have to be prepared to not be sleepy tonight. I need to just do it. I was dehydrating so quickly while running errands yesterday and it was about to rain! I felt a lot better after it actually rained. My body soaking up the moisture in the air. I don’t know how to explain it.

This past tornado…. Excruciating. I’m trying to tap into myself right now to see: do I still feel like I can’t continue?

Sometimes I’m getting all my supplies ready, moving around quickly, everything must be done quickly these days because there is such a finite amount of “good hours” in this body, and there is always so much to do to take care of it, so if I want to do anything BESIDES take care of it, I must move quickly. Taking so many supplements per day requires time, getting my IV bag ready requires time, injecting vitamins into my IV bag takes time especially since it’s new for me now that I’m getting three doses per week for my IV bags - did I share that? That I finally have those little vitamin vials THREE times a week, I think I did, it’s still a miracle for me that I have that now - I messed it up yesterday. I kept injecting air into the needle, it’s going to take awhile to do it as quickly as the nurses. I ask them each time for tips, and they always have a slightly different angle on the best way to do it.

While I was getting all my supplements ready the other day, I’m thinking: how do I keep doing this? How is this my life now? How am I going to keep opening a refrigerator and know that I have such limited options (and yet I still do the, open the fridge and stare inside thinking there will be something new and exciting to eat, why do we all do that? That would be a good Seinfeld-esque bit, I’m always thinking of bits now, great just what I need, another track in my mind, yet there it is and I can’t ignore it, at least I have a little drawer to store the ideas now!).

But as I’m thinking it, I’m DOING the very thing I’m questioning I can do. OMG that’s a terrible sentence.

I can’t help that line go through my head, in a loop, like a little kid’s toy train, I like that analogy:

How do I keep doing this? How on earth can I keep doing this? With no end in sight?

(I can’t eat chicken and rice for TWO WHOLE WEEKS WAH WAH WAHHHH my life is SO HARD CHICKEN AND RICE and A BUSY FULL BEAUTIFUL LIFE)

There’s always a little voice in the back of my mind during these conversations with myself responding to the question I’m asking:

You already are.

YOU ALREADY ARE.

YOU ALREADY ARE DOING ITTTTTTTTTT.

Ok I really need to get up. I didn’t get all my supplies prepared for the nurse to come into my room which means I need to be upright and put on a bra. YES these are the things I’ve been wanting to write for so long. I kept chuckling to myself about mentioning how I woke to that annoying woman at the infusion center and realized I’d drooled all over the pillow. THAT’s the funny shit. THAT’s what makes people laugh.

If I could educate people about things like pelvic floor and how to poop properly AND make it fun and funny?

The dream.

The long awaited dream.

To entertain and educate at the same time. Without going through a zillion hoops or begging producers to take my ideas. Now. The technology is in the palm of my hands. For the young people, they don’t understand how this feels like a miracle to a 70s kid like myself.

Ok one quick story, I need to share a vignette, it’s so fun for me.

When I was 15 years old - I’ve decided that this age goes in the same category as 7-9 years, gd bless the two kids that just turned 10 years old this month, love love LOVE them so much but not a fan of that age bracket, so snotty - I had my wisdom teeth extracted. No biggie. Did it.

Except that part of my chin stayed numb after the procedure was over. I remembered that the dentist said in LESS THAN 1% of cases (I could be remembering this wrong so don’t quote me on a 30+ old medical memory, but this is how I recalled it), the feeling never comes back to parts of the mouth or chin after they do something to the nerve to numb it for the procedure. My sentences are terrible today. I’m so tired on Fridays, and a little extra tired today. I really tried to get to bed early too, but I get on a roll organizing and cleaning and worried I won’t have the energy again soon, so I do as much as I can while I have a burst.

That summer I was 15 years old, wait, no I must have still been 14, I went to Israel the summer I was 15, I’m always off by a year, it’s weird, I went to camp. I think I was still a camper, the last year. Man those were fun times. Camp…I always feel a bit bad for people who never had the camp experience. I don’t know what it’s like to be a non-Jew going to a regular camp, but Jewish kids camp is such a huge part of our life experience. The person I called the day after my dad died? Camp friend. The person who ended up driving me to the funeral? Old camp friend. Many, many of the people who have stepped forward were people I knew BEFORE we went to camp, through our synagogue / Hebrew school / family friend, but going to camp solidifies the friendship.

Forever friends man.

Oh! I had veggie broth delivered on Wed CAMP FRIEND. And homemade almond milk delivered yesterday CAMP FRIEND. I knew them both through other ways, but we still did that camp thing too.

That summer, must have been 1985? I went to camp with half my chin numb. It was pretty bad right the months after the procedure. Some of the gum was numb too.

SO.

Yes, you can guess where this is going after my napping / drooling story.

Because I couldn’t feel half my chin - right side - I’d sometimes have drool come out of my mouth, and I’m laughing my ass off right to myself, so fuck it if I share this kind of crazy shit, it’s not really that crazy, it’s just personal and things most people don’t share, which is what I meant when I’ll share crazy shit, the stuff most people don’t talk about, which is what makes it so freaking entertaining, I loved Ali Wong’s second Netflix comedy special because she WENT FOR IT. Another millennial, being honest about being a parent, and sex with her husband, and being pregnant. All this stuff, is up for grabs. Picklebutts need not apply.

My nickname at camp that year?

Droolie.

Yep.

True story. I’ve had a lot of nicknames - some I didn’t love like Casper the White Ghost, other ones were Bam Bam (after the Flintstones - how interesting that squarespace has the word “Flintstones” as a real word, but only capitalized), Red, what else? I was always given nicknames.

My first email address was negrinator@hotmail.com because my friend Raj called me The Negrinator. I should ask him why now.

He’d probably say something similar to Sean. Because you’re Jules, you can conquer anything.

Dang. That’s a LOT of faith.

It’s good. It’s good for me to have so many people believe in me.

That must be why the support network is so crucial - there are so many layers to it, of course - but I’m always looking for the root, right? I’m always looking for the etiology - a medical term to identify the root “cause” of an illness - what is the core? What is the thing that keeps someone going when they feel like they can’t make it through?

When they are on their hands and knees for far too long and the pain won’t stop and it doesn’t feel like there is any light whatsoever at the end of the long tunnel, just more and more darkness, and horrible smelling mud, and more pain, and demons whispering throughout the dark caves so that their words echo and you can’t tell what direction they’re coming from and all you want to do is curl up and sleep it away, or never wake up at all, just make it all go away, make the pain stop, please let it stop (I’m not feeling this way right this second, I’m just expressing how it FEELS when I’ve felt like this which, unfortunately, has been a lot of the time lately).

What is it that gets someone to perk up their ears? What do they need to hear down the long dark tunnel? To counter those demons? To whisper to them? To help them pick themselves back up again, and keep crawling and pulling their broken body, or their broken mind, or their broken heart or their broken soul or all four, to an unknown destination that seems impossible to get to?

I believe.

Is that the words?


I believe in you.

Omg I’m drooling right now. For real! I’m crying too, just the slow tears down the face but certain animals has me awkwardly typing so I’m leaning hard to the right side, and there is that numb chin shit I never finished the story, it’s still numb after all these years later! I can feel if there’s food on there, but couldn’t for a good year or so, but I still can’t feel if there is liquid rolling down my chin so I’m almost always “eating” and drinking with a napkin and wiping my chin frequently, one of the best “snapshot” memories I have in my head is my grad school friend Jan who I’ve looked for on social media for years because I loved her but I can never find her, I found an old xmas card of her and her family recently and searched again, but still can’t find her shit I heard a door slam where my nurse would park and it’s noon so she is due but this is such a good thing for me to be typing, anyway, we were in that awesome cafe - one of the first “cool” coffee shops in Seattle, I can’t remember the name, shoot - I remember when bestie went there in high school which was “in the city” and such an enviably hip thing to do.

In my twenties, while I was eating soup with my friend, Jan, I must have had soup dripping down my chin.

The look on her face!

HAHAHAHAHAAA priceless.

I got in the habit of telling people after awhile so that I would feel less embarrassed if I did it. Shit, I guess I’ve been doing this for a long time - sharing the things I feel shame about so that everyone is in on whatever I’m experiencing and I don’t have to feel so much embarrassment.

Turned it into something fun and funny at camp. Droolie!

Make the hard stuff fun and funny (while being respectful of the seriousness of the situations of COURSE), release the shame, educate and entertain, maybe help a few people.

I can live with that new way of living and being.

These typing fingers. They know how to tie everything I’m writing together better than I could if I planned it for days.

I gotta go.

Nurse is here.

Should I post? YESSS. In improv you’re never supposed to say No. It’s always “YES AND….”

New life code?

I keep on crawling.

I don’t know how.

No, I do now.

Because so many people believed in me.

Even when I couldn’t believe in myself.

They believed.

Thank you for believing in me.

Your optimistic friend,

Jules