Privilege. This force affects our lives every day though we may not consciously notice. My own life has crossed back and forth across this line. My child self longed for some of the things we have been able to provide for our own children. As a very active child I spent hours upon hours ice skating, doing gymnastics on the front lawn and creating countless drawings (many of horses!). I loved doing these things and imagined being the next Olympic star if only I could participate in the figure skating or gymnastic lessons like my friends. I wished with all my heart to take oil painting lessons at the art studio with the beautiful paintings in the window on Main Street. My parents worked hard to make our life easier than theirs had been and I know they felt badly that lessons simply did not fit in the budget. But we were blessed to always have food on the table and our parents love which as an adult we learn is often more important than money.
When our children were young I worked as a social worker with “under-privileged” families. The Christmas season always brought up a swirl of emotions for me. I took great pleasure decorating our house, making cookies and crafts with our son and daughter and tucking gifts under the tree that I knew would make them smile. At the same time I felt a deep uneasiness because many of the families of the children I cared so much about had to rely on donated food baskets and toys. What does that feel like in a mother’s or father’s heart?
Then there were the months of panic when our children were in middle-school and our lives were turned upside down by an accounting decision (someone else’s privilege to make). With a stroke of a pen our family’s primary income and health insurance coverage was gone when more than 100 jobs were unceremoniously eliminated over night when a holding corporation decided they no longer wanted to own the company, sold off the patents and closed the facility. (The machines are still being made today.)
But what hits me most in the gut right now is the role of privilege in getting adequate treatment for persistent Lyme disease which I have been in treatment for over the past year. Without income it can be nearly impossible to get proper care leaving people to struggle with overwhelming pain, loss of brain function and sometimes disability or even death. Many doctors shun Lyme patients and don’t want anything to do with us or simply don’t have the knowledge or patience to treat this complex illness. Many Lyme doctors charge cash for their services for a variety of reasons too complicated to go into here. The Lyme-literate doctor I see charges $200/hour. I am grateful for his expertise and willingly pay for his services but am keenly aware that the “me” 9 years ago whose family was in financial crisis could not have paid for this care that is getting me well. What would we have done? If I had no insurance to go to the doctor’s at all or to cover the costs of the labs that monitor for potentially dangerous side-effects from the medications or no cash to pay for someone like Dr. S, what would I do? What would happen to my health? What is happening to others?
So, I’m curious. Do you ever think about the role of privilege in your life or in the lives of others? I would really love to hear your thoughts on this topic and invite you to leave your comments.
About Lyme Disease – Lyme is an infection caused by the Borrelia Burgdorferi bacteria commonly spread by a tick bite. When caught early it is highly treatable. When left undiagnosed for months or years or when treatment fails (like in my case) it spreads deep into the body in nerve tissues, joints, the brain, eyes and heart and can mimic other illnesses such as MS, chronic fatigue, fibromyalgia, lupus or Lou Gerhig’s Disease. Once it becomes a persistent infection, it can take months or years of treatment to heal.
Like you, I feel incredibly lucky. If I had gotten sick at any other point in my past I would not have been able to pay for treatment. I know of a couple of people in my country who can’t get treatment funded by our healthcare system and cannot afford to pay privately. They’re left in limbo, completely incapacitated and out of options. I find it very, very difficult sometimes to reconcile how bad I feel for them, with how grateful that I am in a better situation. I feel desperate to help them, but I can’t, and that’s hard to live with.
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Having compassion and an openness to the suffering of others is a strength. Suffering is especially hard to see when it is based on inequity and seemingly avoidable. It is a delicate balance to be aware but not let it consume us and trust that the universe will show us the things that we can influence.
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