This is going to be wildly unpopular. Usually I would express this to a close friend, but I feel at times that just makes both of us more miserable and heaven forbid anyone catch us being pessimistic. That's the ultimate sin, if you haven't heard.
So I guess I'll just be publicly pessimistic.
I saw this message on an Evans Syndrome group I'm in from a young woman from Venezuela. Evans Syndrome is a rare autoimmune disease where the body creates antibodies that attack red blood cells, white blood cells, and/or platelets. It is not well understood and can be difficult to treat (please see: Eli's entire physical demise). This message was posted in Spanish and automatically translated to English, so it is not perfect.
"My husband takes 7 months dealing with this disease. Its values are going up and down. Looks like a roulette wheel that we don't know where you are going to stop. We live in Venezuela and we are in economic crisis. Political and social. You can't get meds. Now he's taking prednisone but we now have very few and in the whole country is not achieved. We are in the hand of God. All his words we provide guidance because we still don't understand this disease. A thousand thanks"
I watched a little boy die last week the same way Eli did, in the same place Eli did, from the distance of social media.
A boy we met at Duke, who had a painfully long and bumpy journey through bone marrow transplant, had two seizures today very unexpectedly. He's back in the duke bmt unit tonight because he needs very specific and specialized care based on everything his body has already been through.
And this woman is desperate for medical care she has no access to for her husband in the middle of chaos and unrest.
There is no safety net. There is no plan or exit strategy. This is just the unfairness and suffering of life. This is why I can't pray and why I think healing is a response to medical care not supernatural intervention. This is why I think your #blessed life is mostly just your privilege to be born in a stable and developed country. Shit, I'm so privileged I took every opportunity to ruin my life in the pursuit of saving my son's life. I mean that sincerely. I had the opportunity to disrupt my family, quit my job, lose my certification, financially ruin my family, and drive myself to some level of insanity. I made most of those choices because I had the opportunity to do so. I'd do it all again. But this woman in Venezuela does not have any privilege to mortgage her life for better medical care for her husband.
I cannot stand manufactured problems. I am also paralyzed in awareness of suffering and lack of reprieve from it.
I'm less angry at God and more frustrated with people who believe God actually does anything. That's probably not fair. Neither is the real and endless suffering that people are enduring out of lack of privilege.
