LA

A note from the Wild West

No doubt you’ve seen the news. Los Angeles has been in the headlines.

Greetings from the Wild West, beautiful RDG readers.

Most readers know, I live in Los Angeles. I’ve lived all over the city in my time here. According to the math, as of this year I’ve lived here as long as I lived in Northern VA where I grew up. 

And I love this place. First and foremost, I love my community. I don’t love some of the depictions in the media right now.

This city is flawed to be sure, but most places have their flaws. 

The people of LA have shown me their hearts time and again and I’m profoundly grateful.

When life turned upside down for us during July’s birth, LA showed up. We were showered with support. I’ve never in my life experienced this kind of love from a community. 

Most folks outside California have the wrong idea about LA. People seem to enjoy dissing on Los Angeles. They see the celebrity culture from afar. They see the power-hungry and the plastic shallowness that is depicted in media. And sure, that’s here. But what people don’t realize is, it’s ALL here. In a population bigger than most states, all walks of humanity are here.

We’re a conglomerate of neighborhoods, dreams, palm trees, avocados, and grit smashed together and threaded by people going every which way at all hours.

And after my many years here, I’ve noticed when it counts  - LA shows up.

As catastrophe strikes, and it always does eventually in everyone’s life, the people here are truly ever-supportive. I’ve seen it during the fires, during COVID, and I see it now.

LA just got over a huge city-wide crisis - many are still coping with the loss from the fires. It’s like everyone is healing from a collective trauma. But in the aftermath, the support was overwhelming. Thousands in lines down the street to help others and donate. 

It was so moving to see. This city is so full of angels.

So fast forward to now, when we see images of masked men raiding our neighbors and innocent people showing up for work, at graduations, elementary schools, their immigration court hearings - families torn apart - LA, in all it’s rawness showed up in protest.

To be clear, there were a few isolated clashes that media jumped on, but there were no riots. We are occupied needlessly by more troops than Syria and Iraq combined. It doesn’t feel like protection. It feels like intimidation.

So, I speak out because my voice matters. Some may wonder why I care so much, generally speaking.  My heart’s capacity to care about other humans grew ten times after almost dying.

Something about being so close to the edge of my mortality that made me feel a vast connectedness to the rest of humanity. I can’t fully comprehend it but I know it’s true.

I feel a calling to help people. And that calling is infused with passion when I see pain and wrongdoing. 

This world is unfair to be sure. I can’t save everyone and I recognize that as fact. But I am an advocate for us all because I believe we are all inextricably tethered to each other. 

Empathy is my superpower. 

I’ve always been someone who cares a lot. Too much sometimes. 

It’s why I tell Zach that I can’t get into sports, because I can’t care about another thing.

I know some might find my caring to be grating, and believe me, I’d love to not talk about that terrible budget bill and saving Medicaid everyday. But I will always speak honestly about the things I feel are right. 

In this climate, it’s hard to separate politics from the functions of my daily life. From our healthcare, to prices at the grocery store, to industry lay-offs, to the rights and liberties we hold dear, we’re all impacted directly by what happens in the halls of the White House and Capitol. 

I’m alive because I have a VERY expensive treatment. Access to that treatment requires the working social safety net. I know what it’s like to surrender to these systems of support. It’s not a particularly comfortable place for me to be - relying on support systems. 

I do believe everyone should have equal access to healthcare. We all deserve it as a human right. It shouldn’t be a reward for wealth and a W-2 job. 

It should be there for us all when it’s our turn to become a patient. And that day will come for us all. 

I guess in the end, I believe in life, liberty and the pursuit of happiness. All are created equal. 

And when life is unfair, I want to be there for people. I want to be a light in the dark.

Inscribed on the Statue of Liberty it says:

“Give me your tired, your poor,

Your huddled masses yearning to breathe free,

The wretched refuse of your teeming shore.

Send these, the homeless, tempest-tost to me,

I lift my lamp beside the golden door!"

I want us all to be a lamplighter for someone tempest-tost on our paths. One day, we might find ourselves or loved ones huddled and yearning for sanctuary.

For we are stronger when we take care of each other. 

LA knows this. LA is not the enemy. LA is full of love, support, and passion.

I almost died here. I was brought back to life here. I healed here. And I’m proud my daughter calls it home.

Have you ever had a question for me? Maybe a burning curiosity or advice on a situation? Click on Ask Rare Disease Girl, ask an anonymous question, and I’ll respond to in a post.

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Are we friends on Instagram ?? Let’s connect there!

Comment of the Week

“it’s not a bad picture - it shows how strong you are” Zach

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If you’re new here and wondering, “what happened to this lady?” read:

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.

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