My Heart is Heavy

There is, I hope, a thesis in my work: we may encounter many defeats, but we must not be defeated. That sounds goody-two-shoes, I know, but I believe that a diamond is the result of extreme pressure and time. […] I am saying that we may encounter many defeats—maybe it’s imperative that we encounter the defeats—but we are much stronger than we appear to be and maybe much better than we allow ourselves to be. Human beings are more alike than unalike.
– Maya Angelou, from The Art of Fiction No. 119, the Paris Review

Earlier this week, the writer, teacher, composer, filmmaker and exceptional human being Maya Angelou died at the age of 86. I remember watching TV during the 1993 Presidential Inauguration, spellbound as she recited “On the Pulse of Morning.” I was only twelve years old, but I knew I was witnessing something awesome, in the sense of breathtakingly impressive. I now grieve her death, but I also recognize that she has left behind an extraordinary legacy, a legacy that lives on in her creative works and the influence she has had on multiple generations, myself included.

But it isn’t Maya Angelou’s death that makes my heart heavy. It’s the news that two women from the online arthritis community have died, one from heart failure, and the other from an untreatable infection. I want to say that I didn’t know either of them personally, so my grief isn’t one of personal loss, and I do not want to encroach on anyone else’s sorrow. Yet I can’t help but feel the rage and sadness begin to boil up inside of me: these deaths should be preventable. Autoimmune disease shouldn’t have shaved 60 or even 16 years off of these young women’s lives. Yet too many doctors fail to identify early autoimmune disease, and then after diagnosis they fail to “treat to target,” insisting that if joints aren’t visibly inflamed, then everything must be OK, dismissing patients as hypochondriacs when they report symptoms (like fatigue, weight loss/gain, and chest pain) that point to the violent damage that autoimmune disease is doing to internal organs and the vascular system.

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