Melancholy set in last week, so we took a spontaneous road trip to Joshua Tree. Saturday was my dad’s birthday. He died last year. When your parents die it’s easy to feel deserted, and I feel robbed of having one more moment with him that didn’t include saying goodbye forever.
The last time my dad visited California we took him to Joshua Tree, right before his double lung transplant. Doctors marveled how well he received the transplant, especially for his age. For two years he did well, and I remember thinking he sounded good in the summer of 2021 while he talked about his next visit to California after the pandemic. But by September, I felt in my heart that dad sounded different (and not good) every time I spoke to him. By late December we learned he was dying. He quickly declined.
There is no burial site or place for his remains for us visit, so at the last minute we took off to Joshua Tree in an attempt to form some kind of connection. I wrote down a lot of things on this trip but choosing not to share. I will say, I always wished my parents would have achieved the dreams they wanted but maybe too stuck or afraid to—who they wanted to be and things they wanted to do and see. This has been one of the biggest lessons my parents unintentionally taught me before dying: that living by our fears and insecurities equals not taking chances on what we most want from life and even loneliness. As a kid who observed her parents, I soaked this lesson in and have always feared this common human transition.
At 43, I’m beginning to see why those who were once aspirational at a young age, succumb to the humdrum of just surviving, not living. I’m fortunate I chose to live my life no matter how scared I am or how atypical the goal. I continue to push despite most of the time, in this stage of the disease, preferring to give up and stay indoors where I can’t be bothered or hurt by the world.
I’m tired. So tired. Most people can’t see this just by looking at me, and when people tell me how good I look, I secretly die inside because I feel like a fraud, as if all my shared woes are dramatized because I “look fine”. No one can truly see how hard it’s been and how my body can be this constant shell I’m fighting in order to thrive (not just survive). It’s not sympathy (or pity) I’m after, but as a rare disease patient who traveled two decades with this disease, including a long time when no one believed or helped me, it’s easy to want to be validated and seen.
I’m not only living against a body that is constantly getting weaker at will, but the possibility that my life may be shorter than most of you (it is possible to die from a severe muscle debilitation disease, a Korean patient my age died from this disease). My mind is always stuck in the past, present and future, but I push my body to live in the moment, to understand this isn’t going to last forever. I’m not going to last forever.
The stubbornness my parents once dinged me for when I was a child is the one trait that has served me well through this ultra rare progressive muscular dystrophy, and something that Jason says pushes my ambition. I’ve done my best to avoid the pits of despair with walls too high to see the light, and what has rescued me is finding freedom where I can. But I’ve actually become quite the hermit since the pandemic. I’ve gotten used to not seeing people as much and being safe, stowed away (I’ll share more later). This hasn’t been good and I’m doing my best to push myself against these tendencies.
My dad loved western films so that’s why we took him to Joshua Tree and Pioneertown. In the 40s, a bunch of filmmakers and investors, like Roy Rogers and Gene Autry, built a movie set in the desert near Yucca Valley. Hundreds of films were filmed there. If you visit, definitely hit up the legendary (women owned) cantina and music venue, Pappy & Harriets, who have hosted music greats from Paul McCartney, Iron and Wine, Rufus Wainwright to Lizzo and Robert Plant on their tiny wooden stage. Thanks for coming on our road trip this weekend, dad. It was good to “see” you. I hope you're proud of me. Happy Birthday, love you. #KamsWheelsTravel @ Instagram.com/kamredlawsk
