So I’m here in Disneyland wearing my awesome Minnie Mouse hoodie by myself on the railroad. Literally nobody else was in my car and the train stopped for awhile at Main Street USA. Conductor comes up to me and asks me how I’m doing I say great and say I moved here from NJ and want to see everything even what the railroad looks like.
Him: Have you seen our show?
Me: Which one? Fantasmic? I saw the smaller version in Florida when I was blind but not this one yet.
Him: Wait. What?
Me: Yeah it’s whatever I got my sight surgically given to me in 2016 and moved here. I could sorta see it but it was all messed up. I was blind from birth.
Him: I think you should get off at the next stop.
Me: Is this the whole railroad? I really wanna see if there’s more dinosaurs.
Him: You can get off at the next stop and get on again to go around the river and there won’t be a wait. The show is going to start right when this train arrives there.
Me: Ok I think I’ll do that. Thank you so much! Have a great rest of your night.
I got off at the next stop.
There was a CM there who led me to the front rail to see Fantasmic.
You guys I saw a dragon. And I keep forgetting fireworks aren’t bright smears they are defined fire dots.
I recently took Iris Sparrow’s amazing Chair Slink class at my pole dancing school, The Vertitude in Los Angeles, California. The class was GD awesome (seriously, check her shit out) but my ligament laxity and nerve damage from a botched surgery to fix it literally made it impossible to finish. I can’t pivot on my knees or stand and kneel without pain. I can’t land on the tops of my feet nor point them well enough to be able to sit on my heels.
To say that I was crushed is an understatement. I was so angry with my body – I’d wanted to take Iris’ class for over a month because she’s amazing. I discovered mid-class that almost every pivot point in Chair necessitates pivoting on either my nerve damage or my bone fusion. I’d have to spend days isolating the moves to figure out how to not dislocate myself, and the bone fusion absolutely prevents me from most of the pivots on my feet. She did a great job trying to help me modify, but my body just couldn’t handle it.
I tried to get through the class – because I’m a big fan of always starting what I finish. Several joints tried to dislocate but then a a back bend I had never done before caused my shoulder to pop out of it’s socket (since I hadn’t programmed into my muscle memory how to brace that one) so I went into the bathroom, cried, and then vomited from the pain.
The first thing that goes through your mind is that you want to quit. Why is your body like this? And how was it fair that you became disabled like this?
But the thing is that problems are opportunities and disability is a super power.
Opportunity 1: I’m able to take skeletal damage that would put most people in the hospital and bounce back from it quite immediately because my ligaments are flexible. After the pain swell it calmed down and I was visibly ok. I’ll be in class tomorrow. I’ve survived what you have broken someone else’s ankle or worse and walked normally the same day, just minutes later.
Opportunity 2: I’ll have to isolate all of these moves and figure out what muscles to tense to brace each joint, and then I can probably approximate it. This will take days – days other people don’t have the gonads to devote to something like this. I’m going to be super powered by my own body’s necessity.
Not going to lie – I considered quitting dance. But 5 seconds later I began to think like this post. It’s ok if when you face something upsetting that you have that flight reaction. We can’t control how we feel – but we can control how we respond to it.
I’ve conditioned myself to quickly flip the switch on my internal dialogue and think like the above. It’s freeing, its powerful, and it always leads to better things.
FACE DOWN, ASS UP that’s how we fail well at being a stripper but win at having tacos in our epsom salt bath so we can go to class again tomorrow because we are superpowered (but sore)…
Cuties is one of my favorite places and it’s not just because their iced mocha is total fire.
Cuties is a safe space that creates programs for the queer community in Los Angeles. While we’ve come a long way from the Stone Butch Blues days, this is so important. If you don’t understand why, I highly recommend this book.
But I digress. I’ve always felt most comfortable in places like this because I have never fit into any sort of box and I love the good energy here. To be just blunt about it – Cuties is a fabulous coffeehouse even if you don’t care about any of this. I’d say that this type of tasty, unique coffeehouse is one main reason WHY I moved to Los Angeles.
My work with PotterVerse and (Re)Generation Who has always been about elevating people in our communities, so ethically I immediately got it. And just look at how amazing the food is:
I was sitting in The Beehive on East Carson Street and I met you. I can’t remember how. You just walked into my life – probably fabulously.
I never saw you in drag, only your male persona. I wasn’t old enough to get into The Pegasus because I was only 17. I remember the day your Mom bought you that Chanel dress. I remember how proud you were. You came to me, your black skin glowing with happiness telling me how it was a once in a lifetime thing – you got a Chanel dress. Most Queens in Pittsburgh couldn’t afford a Chanel dress. You must have gushed about it for at least 15 minutes because my latte was gone by the time you were done. Your dress sparkled – just like your name.
I remember defending you when Yinzers would try and hurt you. Body blocking you. I remember not caring if I got hit.
I remember the day you convinced me to get on the table with you and sing Christine’s part in Phantom. “Ruby – I don’t know Phantom that well.” It didn’t matter. You sang to me. You got on your knees and serenaded me – me in my mini skirt, 7 inch platform boots, and spiked collar – as I stood on a table in that dingy coffeehouse with everyone looking at us.
We used to smack the shitty vending machines and get free Red Hots between lattes and my favorite – Italian Soda with lime.
I remember the day you collapsed in my arms. I think you had drank too many screwdrivers. I remember picking you up. I remember that something bad had happened. I remember holding you while you cried. I picked you up off of the floor at least 3 times that night and I sat with you, wanting to destroy the guy who hurt you. .
I also remember the day you left. I remember all the pain you suffered.
I hope you are alright today.
You always did sparkle.
Needless to say, Cuties is a great coffeehouse with fresh food, tasty coffee, and they also work to get folks housing and more (see that on their site) and very worth your time. GO HERE.
Without any other issue, making a cross country move without knowing anyone before moving is one of the hardest things you’ll ever do.
Without any other issue, being blind, gaining your sight, seeing that nothing was what you expected it was and you also lack the tools most women developed in college to deal with certain social situations – or simply the ability to know how to feed yourself and run your own finances – is the hardest thing you’ll ever do.
Without any other issue, a divorce while running your own company and also a day job is the hardest thing you’ll ever do.
For some reason my path decided to hand me all 3 of these things at once. I am one of the top people who do what I do and on the east coast companies constantly fought over who would get me. The girl who was picked last in gym class in school is now the one picked first. I can build a company, manage 3 billion dollar+ projects for major corporations – I even was one of the main people who launched the iPhone in America – but benign things all people do like laundry or handle a drunk man hitting on you in a bar when you are a serious music student and not there for that?
I don’t know how to do these things because I’ve never seen them before.
I’ve already had 1 Weinstein – like incident, been stabbed in the back by supposed friends on both coasts more than once since I got here, been through a serious health scare, fixed several lingering medical issues, and literally had to rewrite and reinvent my entire internal programming to be able to take care of myself.
For awhile, my programming was on high alert and I wasn’t afraid to be rude to protect myself. Then I settled down somewhat, got screwed again, and now I may have found a balance in my internal security system.
On the east coast I can ask around to find out who is and isn’t legit to limit that somewhat. Here I do not have that luxury. The truth is that I am a very gentle and sweet person who wants to believe the best in others. You may see me as powerful because my job is to make declarative statements online but I am just seeking light in others because it makes me happy. There’s a spark in me that seeks good and see good and I can’t stop it. It’s like a disease.
No matter how many times someone may slam me in the skull with a tire iron, it seems I am too stupid to give up on the fact that there might be goodness and light somewhere and that I will eventually find my people here to create art and music with.
This is why I always try and do more to welcome a new person to my groups. I know how shitty it felt when I moved to college back in the day. And unfortunately I’m experiencing it again with magnifiers put on that experience x1000. It’s easy to think that nobody cares about me even though factually I know that’s not true.
Depression lies. And mine tells me I am worth nothing.
However – never before have I loved where I live more. California is my home. That was the correct decision for me. No matter where I moved I’d feel this way. But adjusting? If I cry myself to sleep only 3 days out of 7 it’s a good week. This is what bleeding to death every day looks like on social media:
It’s made it hard to work on my projects like usual. Up ’till now I’ve posted on social media the happy bits. I’ve omitted this part – because I figured who wants to hear this? Nobody. Nobody wants to hear about a woman who appears massively successful crying herself to sleep.
But over on my Patreon Betsie asked me how to handle fear when starting a new project. At the same time someone sent me another message saying how they thought I had it all figured out and I’m so great at what I do…so heyyyy…fuck it.
Let’s do this.
This is one of the realest posts I have ever made in my entire life. I’m starting an entire new life and project(s). The pain and fear is just as real as my smile on the other end of it.
How I Manage My Fear so that I Can Work On Projects:
1. Shift to a personally emotive or satisfying thing even if it’s embarrassing – like this post: This is not a a technical whitepaper. This is a vulnerable piece of my spine.
Fear is often generated by internalized toxicity that has been given to you by your life experiences. The person who body shamed you, the person who told you that you were stupid and would never amount to anything. These messages poison us in our live via many paper cuts. They take hold inside us in the form of our Toxic Self.
How to neutralize your Toxic Self? Go home.
“Home” can be something familiar and have nothing related to family.
If you draw, try and do a portrait of a favorite actor, flower, or something that gives you joy. Don’t worry about it ever seeing the light of day. Just do something that makes you feel good while you are doing it.
I was overthinking it and thus, created less posts than I wanted. The second I sat down and decided to shoot the shit with you like buddies, this post came in minutes.
Don’t try to play for the gallery.
If you are a musician, learn a cover song that isn’t hard but makes you happy. Don’t worry about it being silly, plebeian, or weird. When I get crash boom fuck all depressed, 4/4 is the only thing that doesn’t stress me out even though I’m a huge prog / jazz / fusion fan with timings so complex it’d make your math teacher vomit. I love everything Allan Holdsworth ever did. But in some dire cases, I’m able to sync my breathing to 4/4 easily so that I don’t panic attack like crazy.
Yeah that means it’s your cue to bust out the Gaga, Taylor Swift or Cvurches. Just breathe and don’t worry about the plebeian nature of it as long as you don’t hyperventilate. create a safe zone. Nobody needs to know what it is.
Unless you are me. Now everyone knows that I get half-naked and sing “Marry the Night” in my room occasionally.
The very act of what you are doing should make you feel whole, safe, and happy – not upset. The idea is to disconnect your mental self from your judgemental self. Usually these are voices put into your head by people in your life who have been toxic to you. You are neutralizing this poison.
Understand that your internal taskmaster may be telling you that you are lazy because you aren’t producing like a factory but the most important thing creative people tend to neglect is their own biological and mental ability to produce and it leads to burnout.
Don’t try to live up to other people’s expectations of you. Just play around like if you are 5.
2. Give Up…for now: Go outside. Go to the mall. Visit a friend. Get some ice cream.
Completely don’t do what you think you should be doing and get your brain into a hedonistic place where you just be kind to yourself. Go have a drink. Get a burger. Buy a new dress. Take a nap.
Break the feedback loop and be lazy for a day. Or a week.
3. Look at the data: We often assign emotional idea to our work and that can be ok, but I see so many people fail because they look at things too emotionally and not enough by the data.
Make a list of the steps you need to complete the project. Review them morning and night to keep your mind in the game. If your brain starts panicking, just know that once you write it down it’s captured – safe. Just refer to this task list like you would manage and big project – like cleaning your car. Oftentimes we get overwhelmed and then stop moving forward and it help just to have that note there and obey the mighty to do list. It kinda simulates having a boss for those of us who self manage and could use some management.
4. Gratitudes: Every night write what you accomplished today and/or what you are grateful for. Perhaps you have a great dinner, could afford to buy a nice pair of shoes, or you had an awesome cookie for dessert at lunch. It doesn’t need to be a big deal. But it’s something that you could have today that you are glad for. Remember – some folks are dying of diseases and can’t even get out of bed. Keep that perspective. For example, even if someone screws you over – what are you glad you learned form that asshole? Did it empower you to help another person in the same situation later? There’s something good in every experience – even very bad ones.
Review these whenever you start to feel like you have nothing. Even when my life was a dumpster fire, I could find things that I was grateful for – like the roof over my head and my job.
Most of us fear starting new projects – or new entire lives – because we are afraid to fail. But if you use these steps to break it all down I think you’ll find that it helps you accomplish whatever you are trying to do.
Most importantly – don’t be too hard on yourself. You aren’t a machine. A nap or a cookie or a Netflix binge or a trip to the gym is perfectly fine. That’s a lesson that California is teaching me – strive for 80% – not 150%. Really it was the missing piece in my life that’s helped me – even though I don’t quite have the hang of it yet – and I hope that it also helps you.
The most frequent question I get is, “Were you really blind?”
Yes. My eyes did not work. I was worse than a -20. This means that my vision was a microscope. I could tell you what angle the shears cut 1 hair if I brought it an inch from my eye. I could count threads in fabric. But I was unable to see to live my life without help. My eyes are deformed like footballs and my retinas are dangerously stretched.
The joke on Scooby Doo where Velma drops her glasses and literally can’t see? That was me for real. My glasses looked like this:
I could only see out of the very center if I did not move my eye at all. Contact lenses actually corrected me better than glasses for this reason.
I made some photoshop approximations of how I was seeing.
Here is a regular image:
Here is how I saw with no correction:
Here is how I saw with glasses:
Here is how I saw it with contacts, which was my best correction available:
They Discontinued my Lenses:
Up until 2005 I was able to buy some extremely expensive contact lenses that hurt and caused me monthly eye infections, but they allowed me to be corrected to MAYBE 20/90. That isn’t good enough to drive, but they forgot to test me so I had a driver’s license. So I did drive because how else would I earn money? I just was unable to see signs. I am a VERY SAFE driver. GPS was a big help because it could queue me to turn. If I missed a turn I’d just do the safest U Turn possible.
It was dangerous enough that my eye surgeon yelled at me. I’d often not be able to recognize my friends and it caused a lot of embarrassment because I didn’t tell anyone I was blind. I am a firm believer that nothing matters except for what you can offer to the world. We are not limited by our disadvantages as much if we stand up and tell it to STFU.
That’s me. My personality.
In 2005 the lenses were discontinued and I had to use disposables that didn’t fit my eyes and slid behind my eye a lot. They also gave me an obstructed field of vision. I just lived like that and didn’t say anything.
Cataracts: The Dead End and the Open Door:
In about September 2015, I developed cataracts on top of this, which made what little coping mechanisms I had fail. I was slowly losing my sight even worse. They estimated that I had less than a year before I’d notice a severe impact on what was already a poor quality of life. I was a shut in for about 3 years when my job thankfully allowed me to work from home but it was isolating and terrible.
Searching for a doctor was also terrible. Big Pharma enjoys it when doctors sell procedures. One doctor wanted to sell me Implantable Contact Lenses. He wasn’t really answering my questions, but I now know that it would have given me maybe a few months of better vision before they would have to be surgically removed, thus increasing the risk of damage to my eye and losing my retina.
I found another surgeon that seemed to not care about anything and treated me like a piece of sausage in a factory. He wouldn’t even make eye contact with me in the office.
At this point I was terrified, but thankfully I got a recommendation from a friend to see Dr. Tal Raviv at the Eye Center of New York. No, they are not paying me to write this post. I have no financial relationship with these guys other than I paid them for my surgery and they did a great job. To this day I advise people who have problems to go there and/or ask their office for a recommendation if you can’t make it to NYC. These guys are legit.
It turned out that removing my lenses and performing cataract surgery would allow me to have a normal quality of life. The only reason no one had suggested this before was because until your eyes start failing with cataracts, the insurance won’t cover it. The technology has also gotten better and less invasive than it used to be.
Because of my fragile retinas there was some risk. It was not advisable to do the version of the surgery that was fully covered by insurance. I needed to get the laser version.
I posted about this on my old blog and within 3 hours my readers yelled at me to take their money and I had raised close to $10,000 which was more than I needed so I asked people to please stop giving me money and I booked the laser version of the surgery.
I had to do retina checks, surgery, more retina checks, then another surgery and so on. I had my left eye done first and then the right eye done when it healed. For most of 2016 I was doing this and healing.
This is my eye directly after being lasered:
That is not photoshop. My natural lens was cut painlessly under the skin without cutting into my eye at all. All I saw was colored lights.
They then took me into the OR, knocked my ass mostly out and then sucked that out and replaced it with a functional lens implant. During that process I thought I saw leprechauns and long face aliens inside an opal cave and flowers and butterflies. All I remember is heading the doctor say “look forward”. I did my best and asked if that was forward and then he was like…”no”. Which I thought was funny at the time but was too drugged to notice.
I had to wear this on my face to sleep:
I developed secondary cataracts and got 2 laser procedures to fix that. And then after about a year of surgical hell I emerged with -1 vision that is now correctable to 20/25. Yes, my hair was bright red then:
My eyes were so bad we knew beforehand that I would not be getting 20/20. Another thing we knew is that I would lose my ability to focus near and far and need progressive lenses.
Here is a comparison of my before and after eye surgery glasses:
Having this surgery changed my life for the better in so many ways that I can’t even begin to describe it. What I didn’t realize is that being able to see would cause me to have a complete nervous breakdown as nearly everything I understood about life turned out to not be true. I didn’t understand what I looked like until 2016, and now struggle with dysmorphia. I would have to relearn how to live my life, much like a space alien who just arrived here.
So I moved to Los Angeles in August 2017 do do that, because I have always believed that anything worth doing is worth doing in the biggest, most fabulous way possible. I’m studying music and rebuilding myself in an image that serves me and the world the best. I’m also sharing the insight I’ve accrued in my somewhat unconventional life.