I got out of the house 3.2.19

I love Sugar Plum, a vegan dessert place on Capitol Hill in Seattle but it’s expensive and in an odd spot so I rarely get there. I need the calories and I’m sick of my usual foods so I made the trek.

I love Sugar Plum, a vegan dessert place on Capitol Hill in Seattle but it’s expensive and in an odd spot so I rarely get there. I need the calories and I’m sick of my usual foods so I made the trek.

I had a weird day yesterday March 2nd. I’m writing this the next day - I have to be transparent about that - my brain can’t do the usual social media organizing, writing ahead, post this then blah blah blah. I don’t care about any of that anymore. Couldn’t care less about the number of followers, all that bullshit. I never really did. I just have to post and write and say what I need to post and write and say. It’s strange to me that people think I WOULD care.

My needs and wants are relatively simple these days: I want to be able to eat, shit and stay alive.

It was a decent day - I got out of bed and wanted to be in the sunshine so I went to Capitol Hill to get some vegan ice cream from Sugar Plum. It’s an awesome little plant-based dessert place. The young woman was super interesting to chat with.

When I’ve been cooped up and in bed for days, I’ll run a really basic errand to stay connected to the outer world. I never know when I’ll have energy so it makes it challenging to make plans with people. Plus engaging is tiring, so if I’m not in the mood to chat, I can run the errand, feel productive and go home. Sometimes I want a little conversation. I’ll find an interesting person to talk with at a store or coffee place. This woman had a ton of food restrictions at a young age. We had a lot of similarities, which isn’t common because my case is so unusual! (And yes this makes it challenging to find the right support group. Hmmm…which specific cancer group should I attend? So many to choose from!)

She said she often makes her own sorbet, something I’ve been thinking about doing. I’d like to use kale juice or other savory vegetables and puree them with different liquids for non-sweet sorbets. I’m so sick of sweet. I’d do anything to stuff myself with salty popcorn or kale chips. I picked her brain about how I can do it - she had some great tips.

As I was leaving, I said what’s your name? She said it and I didn’t catch it because my hearing isn’t awesome. (I have terrible vision and hearing - a little embarrassing to admit on top of all my other health issues but it can’t be a surprise that I was born with very fucked up genetics.) I said I’m Julie and her entire expression changed. She said that’s my name backwards! My aunt’s name is Julie and my mom wanted to name me after her but wrote the name backwards. What a trip. I left in a lovely mood.

Unfortunately, I then got into a disagreement with a family member. My family is used to me being very independent and haven’t adjusted to the fact that I can no longer live an independent life and require a lot of help. It’s not something I’ve shared much publicly. But I can’t hold it in anymore. Fortunately, my community is coming together and offering their support. Dang! What a huge relief it is to have a list of people that want to help - I just posted the request a few days ago and I feel like I can breathe now. Two years of worsening health and not knowing what I NEEDED. It took me such a long time to figure out how to niche down actionable tasks and learn how to ASK for help.

It came to me this week that learning how to depend on others is part of my dharma. It grates against my independent nature so much. But. I. Must. Learn.

Survival requires it.

I wish I could convey what a hit on my pride and mental health it is to publicly beg for help.

That will be for another post, I’m still processing it.

When someone has been taught to never ask for help, it’s painful to do it, especially late in life. Like really, really painful. I’m afraid that I’ll be told No. Or be ignored. Being ignored is a major trigger for me. I don’t mind if someone says I can’t help, or responds in some way, as long as they are straight up and I know what’s going on. Then I feel safe. Because at least there is engagement and I know they aren’t letting go of me. I’ve had so much trauma now in the medical world and beyond where I’m being blown off / ignored. If I’m screaming heeeeelllllppppp and I hear nothing back, it crushes me. It literally breaks my mental health like nothing else does.

So when a particular family member chose to ignore me for the past couple of weeks as my health worsened - and not for a logical reason like their own health issues or something significant going on - well, I’m not proud of my reaction. At the same time, I get it. I’m a wounded animal that’s super scared and hungry.

I’m already tortured daily as it is. I’ve never been a prisoner of war, of course. But I do experience things they use for torture: starvation, exhaustion, dehydration. I don’t need any additional challenges.

This is why I’m so so protective of others that are being mistreated. I want to be that person that says I hear you. I see you. I feel your pain and I want to help in any that I can if for no other reason than to make you feel less alone in your suffering.

I’m nervous to post this. I still haven’t told anyone I’m writing here. Which feels good for now. I have to do whatever is necessary to keep this mind intact. I told the family member that I need to start sharing this aspect of my story - I can’t share my mental health struggles without including parts of this story - and they said ok. I’m not sure we were both in the frame of mind to be making official agreements, but I have to do what I have to do.

I’ll do whatever it takes to stay alive.

Much love,

Jules