I survived outside my cocoon! 5.19.19

These are the scary stairs at my airbnb. Fortunately, all went well, but I was definitely super careful - I can’t get cocky about this stuff anymore.

These are the scary stairs at my airbnb. Fortunately, all went well, but I was definitely super careful - I can’t get cocky about this stuff anymore.

I wish I could find better words to describe what it’s like to go from able-bodied to disabled in a relatively short amount of time - and at mid-life.

First, let me explain a few things. I’ve had issues with my GI track since I was 17 years old. I’ve had to be careful about what I eat for several decades. Even during my “healthy” years, I still didn’t eat a lot of things. I’ve never tolerated dairy and wheat very well - though a little here and there is ok. I can tolerate sheep and goat milk products much better than cow (it has to do with the size of the animals but that nutrition explanation is for another day).

However, when it comes to my physical strength - and not the functioning of my organs - I’ve been really, really lucky. I’m very chill about when and how I share this kind of information. I’m the last generation that believes in being humble! I used to read Miss Manners for FUN.

Plus, I’ve spent enough time about hardcore athletes droning on and on about their workouts and whatever else, that I’ve made a point to keep my athletic experiences mostly to myself.

But as I grow my online presence (this is just the beginning - even though I am feeling the urge to share a post on Facebook to clarify that I’ve never wanted this job - being out in the public SO much about so many personal things is not exactly a dream come true - and to fight evil? That may have sounded appealing during my healthier years, but now I’m fucking tired and older. And the whole thing sounds exhausting. I want to do what my peers are doing! But alas, I took the job. So now I will do it. And do it the best I possibly can), I will be sharing more exercises I’ve developed in order to improve poor motility function, and prevent injury.

I spend roughly 2-3 hours each day walking, dancing, and stretching (some yoga, some regular stretching). Some days, I do none at all if I’m too tired! But that means I can’t eat any eggs that day. If I’m going to eat eggs, I have to do at least an hour or I’ll be in pain when I lay down.

I’ve always been a pretty naturally strong woman. I’ve always had more muscle than most of my female peers. When I used to mountain bike with my ex and a bunch of dudes, the guys were impressed I could keep up. Apparently, I have fast twitch muscles? I can’t remember what it means but I know I have them! Once, when I was at the Seattle Science Center with the (now teenage) kids, I did this thing where they had men and women kneel. Then you’re supposed to wrap your hands behind your back and touch your nose to this red button on the ground.

Women were supposed to be able to touch their nose to the button because their upper body generally didn’t weigh as much because they generally have less muscle (oh gd I hope they’ve gotten rid of this as i think of Serena Williams and her amazing athletic build!). But (some) men could not touch their nose to the button because their center of gravity was different.

I could not touch my nose to the button, I kept falling over.

I had a lot of curves and mushy upper arms, but it was all muscle underneath.

So I’ve always been strong! That’s a very long round about way of saying that! I’ve mentioned that both my parents are super naturally strong. My mom used to arm wrestle with my brother and his friends when they were teenagers and she could kick their ass.

I also have really good balance. I like to think it’s a special attribute but it’s most likely because I’m barely five foot tall and wear an 8.5 shoe, sometimes even a 9 in European brands.

I’m basically shaped like an L!

It’s been really, really challenging for me to remind myself over and over again that I need to be super careful about getting out of the bathtub. Or walking up the stairs when I’m half asleep. The stairs at my home are carpeted and I know them well.

Staying in an airbnb with unfamiliar terrain is nerve wracking. I’m actually considering advocating to airbnb that they include filters that include things for disabled folks. We’re 50 MILLION strong. We’re one sixth of the United States.

Businesses are going to have to listen.

I’ll make sure of it. I’m late to the party, but I’m not going anywhere now. Well, I hope not to.

My last airbnb had these rocky, uneven steps from the living room/bed area to the kitchen. Every night, I was worried I was going to fall off them. I think the owners kept the original stone floors?

This past weekend, I stayed in an old house as well. The stairs are so narrow! My feet are so big, they don’t even fit on the step when I’m wearing my boots or sneakers.

So when I had to go up and down the stairs when I’m woozy or sleepy, I made sure to hold onto the railing with BOTH hands. Yup. That’s what I have to do now. The last thing I need to do is fall and crack some bones. (At least they are strong bones according to my recent bone scan - fuck you prednisone, you took my adrenals but you didn’t take my bones bitch!!!)

It’s a strange phenomena to feel so capable and so strong and so even footed for most of a life, and then to have that taken away along with so many other things we take for granted….I realize that as we age, these things happen.

I’ve just had so much take away at a relatively young age.

I loved the house! As I did the apartment in San Diego. So I put up with these things. But I’m wondering if I should be more careful about the places I choose. The cool thing about this place was that it had an old shower - no bathtub. But it had this handy little faucet at the bottom of the shower - and had a removable shower head which is important for people with a PICC line! Or any needle in the body. We got so drenched between the ritual and walking on the beach in the rain, I needed to clean up a little!

It was a big space so I was super happy that I was able to have new friends come over for tea on Saturday. It felt so good to “entertain” in my own space and feel like a regular person. These little brief visits to the “regular” world, especially with people who are so kind and understanding of my situation, help my mental health in so many ways.

It is extraordinary to me how millennials - not all but a lot - and men of color can apply their own knowledge of the world to my disability issues. And yet, a family member near my age asked last night - such a sweet man too, very open minded - what it means to be “woke.” I took a deep breath and did my best to explain. Then I sent him a link to Hasan Minhaj’s show on Netflix! I think he’d really dig him, and also, Hasan helps wake me up, in such an informative way.

I can see why people of color get so tired of explaining things to white people, and are like do your own homework. I’ve only been doing this for a short time, and I’m already exhausted. But if I can help prod some good people awake, then I will!

Now, the question is: do I ask #disabledTwitter what filters they wish airbnb had? I will. I just need to be prepared for the two things. Nobody answers. Or, they do and I feel like I need to do something with the information. I hope to just tag airbnb and see what happens.

I am very nervous to consider myself a legit disabled activist because I’m such a rookie in the disability world! I still say shit that’s not ok all the time, just to myself or Bestie, but still.

It still takes me a beat to realize someone else is saying something really able-ist (like when someone - a white dude - said if he ever got that sick, he’d want his wife to take him out back and shoot him). When the horribleness of that comment hit me, I was like ahhhhhahahhahahah pain pain PAAAIN. Waking up hurts.

If you don’t see it yet: he is essentially saying to disabled and medically fragile that we’re not worth keeping around. I know he was personalizing it, but that’s the messaging behind it. That’s the sort of thing that takes me a second to “see.”

I still don’t see it ALL. It will take time. Waking up can’t happen overnight. I mean, I guess it could and maybe does with some intense spiritual work.

But I think that most humans would have a circuitry overload - it would melt down their faculties and possibly even cause a psychic break in their mind.

I know what I’ve been going through the last couple of years, the pain and the realizations and the downloads about which content to share, and when, wow. It hasn’t been easy. Definitely felt close to breaking my mind, but maybe not. I don’t know what that would feel like. I’d rather not find out.

At least I figured out a system for managing all the content running through this mind.

I’m excited to fix up the space so that I can possibly start playing around with self portraits and video. It sounds so narcissistic to focus so much on Self.

But that’s what I’ve got to work with. And my friend that I was visiting this weekend keeps reminding me that I’ve got an important story to tell and lots of things that help people to wake up, and let’s hope, heal.

I used to feel such joy at the idea of being considered a Healer when I was young.

Now, I worry I’m not up for the task. I worry I’m too jaded now, not pure enough heart. I get so angry! I road rage! I’m so impatient. I especially feel this way after meeting with my new wonderful Native American friends.

They were so awesome to me. Took such good care of me. And so lovely about telling me how brave I am, for even coming down for the weekend. I’m not sure what my friend told them exactly, but I do have a cool story from the summer I made my pledge to refuse medical treatment if the ACA was repealed. This man pulled me aside and told me something, he said he was a descendent of Chief Seattle….

It’s been interesting spending time with Riall when he came over to do my podcast and then spending time with Native American dudes. There’s so much to learn from their culture, and our boys need it so much. They’re losing the toxic script that so many white men have been given.

They need something positive, nurturing and compassionate to replace it.

So much happening these days. The earth shifting beneath our feet on a daily basis.

At least my support network keeps growing.

I’m listening to Ingrid Michaelson’s song, Breakable (I LOVE HER - I think this was the first song of hers I ever heard - on MYSPACE - no I didn’t have an account but I loved that you could choose a song to play when you visited a profile).

The right song to hear as I wrap up the post about being happy I didn’t break anything going up and down these stairs. Once I have my herbal sleep concoction in me for the night, I’m pretty wobbly!

But I did it! Wobbly or not. I did it. I drove myself several hours away and back, and feel not only ok, but really good!

Thanks to my wonderful new friends, I get to keep learning about these healing rituals!

I really have to work on my podcast outline!!!

Much love,

Jules