My first podcast with @handiscoverworld and its host British Paralympic judoka, Jonathan Drane. Handiscover World is an accessible travel podcast that discusses what travel is like for people with a wide range of disabilities as well as our stories and background.

We have been led to believe it’s just one person or one party creating the demise of our country, it’s not. It’s systemic. The system is riddled with poison and both republicans and democrats have been putting that poison into their pockets for decades which results in our current system that deeply lacks morality, fairness and justice.

For weeks I've had dozens and dozens of bug bites all over me from sleeping at night (Jason has zero) and during the day. I'm sitting here working while mosquitos and bugs are feeding off of my legs and feet and there is nothing I can do about it because I can't move my legs nor reach them. 

You don't realize how much you need your neck until you're forced to realize how much your neck does for you and what happens when it starts dying. I will push myself to draw until I absolutely cannot, but why must everything in life be so difficult? Why am I constantly saying goodbye?

“A human body is a conversation going, both within the cells and between the cells, and they're telling each other to grow and to die; when you're sick, something's gone with that conversation.”

-W. Daniel Hillis

Today is international Rare Disease Day; a day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

A rare disease is any disorder that affects a small percentage of the population, therefore has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Basically, not profitable enough in a multi-billion dollar sect of high profit drugs.

I loved interacting, especially with those who felt open and vulnerable enough to share what they were going through. I feel privileged when people approach me with their struggles and share how they relate to my story. 

One of the unexpected side effects of sharing my story is it has given permission to everyone around me to share some of their most darkest, deepest struggles and secrets, and this art show was no exception. Strangers came up to me sharing their stories of illness or depression. They shared stories about their loved ones struggling with illness and what that is like to watch. What I have learned is most everyone is struggling with something and people desire authenticity.

Yayoi Kusama + Ai Weiwei Marciano Foundation, LA, Exhibition.

“If my art has nothing to do with people’s pain and sorrow, what is ‘art’ for?” - Ai Weiwei

Roadtrip to Eastern Sierras.

“You expected to be sad in the fall. Part of you died each year when the leaves fell from the trees and their branches were bare against the wind and the cold, wintery light. But you knew there would always be the spring, as you knew the river would flow again after it was frozen. When the cold rains kept on and killed the spring, it was as though a young person died for no reason.“ - Ernest Hemmingway

Soon after receiving my new wheelchair I was noticeably melancholy.

"Another milestone", I thought. "Why must this disorder continue inching until it has everything?"

It was mixed emotions. On one hand I was nothing but grateful, on the other hand the future keeps bearing in closer. I quickly picked myself up and remembered to relish in increased mobility. This is good news. While it's difficult to approach another milestone, receiving this chair has been the highlight of an extremely difficult 2018 and past one and a half years, really.