During the summer, when I was a kid, I’d create all kinds of activities for my younger siblings and cousins. There was my younger brother and sister, my four cousins who lived across the street and THEIR three cousins who lived kitty corner to both of us. The youngest were very small for much of my childhood, but I would still often be in charge of at least five or so kids.
I’d create haunted houses (wet cotton balls were supposed to be eyeballs - not bad for a 70s kid), camps, waterslide park (in the backyard), library (for years, every book in the house had fake library slots in the front), and my FAVORITE of ALL TIMES: SCHOOL.
I hosted “school” for my poor little kids the MOST often.
To this day, my cousin STILL gives me shit about making him do math in the summer time.
He’s done well in the business and is an all around great guy. I don’t feel bad. A little extra homework never hurt anyone.
I’d give myself homework! I have…forever. I created new programming when I was in a youth group in high school. I started preparing for grad school not long after graduating from college.
I’ve always been planning, preparing, organizing. My entire life. I think it’s both how I am, and also my default for when I’m freaking out about anything.
Well, if I make lists and create business projects, then I can’t just die and disappear! I have to finish what I started!
When my dad got home from the hospital, I dug up my whiteboard from when I was in chemo.
I’m sure other people have found more modern / digital ways of dealing with these things. Though, the hospitals still use whiteboards as well. They are important when you’re tracking meds, what time you’ve been given one nausea or pain medication, who has taken care of which tasks, etc. All of this is near impossible for a patient to track without having it written down somewhere.
When I pulled the board out, it looked like the photo above, but had a bunch of notes on it as well.
Ha! I definitely have been thinking about the podcast for awhile. Crowd-sourcing my medical case is obviously not as new of an idea as I thought.
That often happens for me - probably for a lot of artists / creatives - I think I have some new idea! Omg! Can’t believe this new idea!
Then I look through old papers, or notebooks, and I’ve been writing down the SAME concept for years.
My lists are how I function. I can’t live without them. As I’ve mentioned, it’s taken me many, many years to figure out how to organize the content hurtling through my mind, especially now that my memory is so fuzzy.
I think that the fuzzy short term memory has allowed new channels in the brain.
If the mind has something like roads and pathways, my short-term memory doesn’t move through a major channel anymore. So in some weird ways, losing the short term memory has given me this entire new freeway in my mind to process other information.
It’s not always relevant information, or necessary at the moment. And that’s the toughest part for me these days.
Bucketing. And my intuition. Sometimes I have a writing idea that seems SO urgent, but the idea sits on a piece of paper on my counter for awhile, then it moves to the filing section. If I ever get around to the niche filing and it doesn’t feel like it’s time yet for that concept to be written about, then there it stays.
Now, at least, I know what to do with the info. I’ve been organizing them in a Google doc and then I’ll print them and put them into notebooks. Whether I use them ever, is now irrelevant, I’m realizing.
What’s more important is that it calms me to write the ideas down and organize them. Even if I don’t use those methods to find that writing idea again! It doesn’t matter. My brain knows it’s somewhere SAFE.
I’m sure this is tied together with trauma in some way.
Safety is a huge factor when recovering from trauma. I’m no expert - so don’t quote me - because I’ve only been studying trauma since my short term memory doesn’t work anymore!
I only know that safety is a really important thing for people who are going through a trauma and/or recovering from a trauma.
It makes sense. But before I’d gone through the really horrific last few years, I would not have understand the depth of what trauma can do to a mind, to a psyche, to a heart, to a soul.
It alters it. No question. Whatever cellular make-up, or energy frequency, atoms firing, whatever the fuck - all those things are altered by trauma.
If you have repeated trauma, like I have had in the medical system, or others do in war, or being assaulted or abused in some way over and over again, all those levels and biochemistry and synapses CHANGE.
My nervous system no longer works the way it did prior to 2014. It’s so maddening when people say such stupid, ignorant stuff about people who have been assaulted or traumatized in some way.
To think that Ford-Blasey was SO traumatized from what happened with that…caveman Kavanaugh, that she studied trauma and the brain for her entire career! And still. People dismiss her. Ph fucking D.
I’m still figuring it out. What pieces of me from my old self remain. Which new ones are gaining strength. It’s scary, but less scary than it was a few months ago.
I know this is in large part why I’ve gone on the internet freaking out about something. And able-bodied people that haven’t had serious trauma are like: what the fuck is Julie Negrin freaking out about?
And inside, my cerebral side is saying: I’m not sure! I don’t know what was triggered! Or, why this is happening to me. Something made me feel unsafe (opening up a letter from the government, for example, can cause an entire meltdown, though that’s better now because I realize 90% aren’t saying jack shit in those letters). It’s so much of why I’m so careful about who I surround myself with. I need people I know can stay steady with me if I start to get upset or I read an email from a doctor while I’m with them or something happens to my dad or whatever.
Safety is huge. I have to feel safe as much as possible, when I DO have some control over my circumstances, because so much of the rest of my life is so unpredictable and terrifying and I don’t feel safe.
Think about how unsafe I must feel in the medical system after everything I’ve gone through.
AND, now I have the added trauma of what’s happening to my dad…
That’s just the latest trauma! It’s like Jenga in my mind. I keep adding one trauma on top of another, hoping the whole thing doesn’t come tumbling around and I’m left locked in a small little hole of jenga pieces and my mind jumbled around me.
Now, I’m like the Frankenstein character that’s not running around going omg omg omg what’s happening to me. Instead I’m sitting on the hill, studying my hands, looking at my belly, trying to figure out whats what.
When I see this whiteboard, I just laugh. Of course, I still make lists. Still using productivity as a way to cope with uncomfortable feelings and major anxiety. Sometimes, I find a note from years before! And I write something that I had no idea I thought about during that time frame. It’s weird.
Check out on the board how I thought about traveling around in a Winnabego! I thought that was a new idea in 2017!! Truly I did. I didn’t even require daily IV bags when I wrote that!
That’s what I find the most interesting about reading old notes - because I often end up moving ideas around like puzzle pieces. No, that’s going to be for the podcast, not the blogging. Until one day, it’s birthed into the world and not just living in my head anymore.
On the top left of the board is the powerful statement I wrote: Everything I say , do or feel is presuming I’ll live a long life! That’s my starting point now. For everything.
What the fuck. Sometimes I need a good eyeroll given to myself! No, it’s actually good. It’s good for other patients to understand how crucial this kind of mindset is. It’s actually very powerful for me to say these things and to presume I will be around long enough to do my business projects.
I’ve also made peace with the fact that it could just all spiral down in a matter of weeks/months like my dad.
Or, I could end up with something like pancreatic (a Lynch cancer) and get some time to say goodbye.
Who the hell knows.
All I know is that this way of thinking and planning has gotten me this far, so that part of me is staying!
It’s weird. I keep saying I’m not the same person, even though in so many ways I FEEL like I’m the same. But then I don’t react the same to something, I definitely get agitated more easily, I’m on edge a lot. I don’t trust so easily.
I often don’t feel safe. I don’t feel safe when I’m surrounded by people who in denial about how sick I am, because I’m afraid if something happens to me, they won’t take it seriously. I may get a little extra worried - but so far, people have done ok on my watch. I never feel like there’s any time. I’m SO tired (I went to bed so late last night) but need to walk on the treadmill still and it’s 9:40!! So late to start walking.
But I got some stuff done today which I was happy about. It makes me very happy to create lists, then create the things on those lists and then create more lists and ideas. I will likely die with a list of things I still haven’t finished. My real goal here is to figure out how to start downloading my nutrition info in an organized way.
Usually some scaffolding or organizational concept comes to me - like when I was on the treadmill and the podcast concept came to me, and I saw the cover art for it, and it was very clear. That was only last spring! I move to birth it relatively fast compared to how long it took me to create my cookbook and other things.
This time, though, I can’t see how to organize all this medical and nutrition info. I think I have to get my writing here and elsewhere more streamlined. It’s been a LITTLE all over the place (Liz Lemon sized eyeroll).
I wonder all the time how those actors like Tina Fey keep track of SO many different ideas and writing concepts and projects. Obviously, she can afford staff now. But still. Staff can’t necessarily help organize inside someone’s head. I still need to be the one to say I need help with X, can you help me bucket all these nutritional tips for GI problems?
That’s on me.
That’s for another day. I didn’t leave enough juice to walk on the treadmill. Ugh.
Tomorrow, I will rest. For now, I will walk. So not looking forward to it.
It must be done.