Autoimmunity and Role Models

I’ve accomplished a few things in my life, raised a kind and wonderful daughter, learned how to be a journalist without the benefit of college courses (I was a hotel administration major) learned how to program a computer with the benefit of two-year’s worth of college courses (thanks to my community college) and learned how to land a job. Much of what I’ve learned has come from reading and doing my own research, following my curiosity.

When I got a sudden onset of debilitating Rheumatoid Arthritis on Jan. 21, 2019 (in hindsight, it wasn’t sudden, it was long in the making), I decided to do what other people weren’t doing. While many people landed in online forums, trading on how each was in an enormous amount of pain, and in many cases, trying to one-up the other, I decided to find a way to get healthier in a way that aligned with my values. It can be valuable to commiserate with others who are in pain, but you don’t want to get stuck there.

I put in a great effort to learn about rheumatoid. I looked for other people who were living in harmony with their diseases, and I found there are people, with many kinds of diseases and health conditions, who are living fulfilling lives. I sought out people, mostly on youtube and social media, who had all kinds of physical and mental health conditions. One of my favorites is Shane Burcaw who is a funny person, an author, and an advocate for people with SMA, spinal muscular atrophy. Shane has SMA and he lives a full, creative, and productive life. He and his wife, Hannah, do a podcast together and advocate on behalf of others with disabilities in a playful and fun way. They’re an effective team.

Another favorite of mine is SBSK, which shows that love truly does conquer all. It shows people can be full people, even with a serious condition that might kill them before they get to be a teen. It shows the unconditional love they give and get.

All of these people are my role models. From them, I learned a mindset. I still have three autoimmune conditions, but they don’t stop me from living a full, productive, and creative life. It took effort to get here. A quiet effort. Studious effort. Concerted effort. I’m always in progress but I’m living a life free of pain, for now, and one of the reasons why is I decided - actually decided - to take a path of my own making. I discovered that most people are looking for a pill to get out of the pain, whether it be physical or mental. And you may need pills. I may eventually need pills. I’m sure all of these role models of mine are taking pills, but there’s more to it than taking medicine. Medicine is one aspect of healing.

Anyway, these are thoughts I had today. I was inspired by a passage in a book on writing, Bird by Bird, by Anne Lamott. In the chapter on Perfectionism, Lamott said she had her tonsils removed, and the following week it was so painful that she could barely open her mouth. She ran out of painkillers and called the nurse, who told her she didn’t need painkillers. The nurse told her to get gum and chew the gum vigorously. When we have a wound in our body, the nurse explained, the muscles around it cramp to prevent more infection. And so she chewed the gum and it relaxed the muscles. Within minutes, the pain was gone. Think about that. That anecdote says so many things. Sometimes, you have to open the aperture of your mind and see things in a new way.