Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.
In September, I had the honor and privilege of giving a TEDx talk just two weeks after my father died from Ankylosing Spondylitis, a disease I inherited from him. I am so grateful for having this platform to share via the Sacramento TEDx Changemakers series.
I hope you’ll watch and share this video to raise awareness about living with chronic illness, but I also hope you’ll take something away for your own journey.
I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me. This walk felt like something else to fill up space on my calendar. I could be doing…something else.
It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.
I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”
It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.
I didn’t want to start this blog. I knew it would get me in trouble. The kind of trouble that puts me in front of a crowd of 200 people from around the world to talk about what it’s like to live with Ankylosing Spondylitis. I’m in trouble. Big time.
I didn’t want to dive into something bigger than I could handle – something that had the potential to amplify my voice into something like…well, like this conference I’m going to in San Francisco the first weekend in November. I’ve really done it now.
Rachael died the day before her daughter was due to be born.
But baby Ruth was already over four months old when Rachael died. She was born so early she weighed less than a pound – 0.95 pounds, to be exact. That’s less than the weight of a four-stick package of butter.
Our physical bodies are on loan to us. They will die. It is our spirit bodies that are unique and will never die. It is our spirit bodies that fall in love; our physical bodies only transmit it through touch. It is what we leave behind of our spirit bodies, our love, that becomes our legacy. Continue reading Remembering Rachael, Raising Ruth→