“I don’t know what it’s like to live your life.”
Driving home from work tonight, my thoughts bouncing from what’s for dinner to Lyme strategy to CRAP–I can’t see in the too-early dark! I was half-listening to an NPR segment about a young woman who is considering becoming a nun. I was struck, particularly, by a statement made by the older nun who was recruited to talk with the young woman. She was recalling a conversation she had had with a female inmate while working as a nurse in a prison.
“I don’t know what it’s like to live your life.”
I had to let that sink in at the stoplight.
With abandonment being one of the most frequent, hurtful outcomes of having a disease that’s shrouded in lies, that statement rang true. Ridiculously unfair, but true.
Nobody can ever understand what it’s like to be in our rotten bodies, and we make ourselves crazy trying to convince others of how awful it is. People will never know what it’s like to live our life. NEVER. So why do we spend so much of our precious energy telling our “personal stories” in the name of awareness?
I suspect that one reason is the potential told-you-so factor. Those of us “on the inside” (yes, Lyme is cool, and mysterious!) know how easy it is to get the disease. You don’t have to be Ranger Rick tracking bear deep in the forest, or Johnny Appleseed traipsing across the tick-infested countryside. You could be a toddler playing in your own yard, or a kid on a school trip, or a corporate executive enjoying lunch in a city park. So telling our story is like saying, “Hey, jerkoffs who don’t believe me, you’ll rue the day!” It’s a way of placating our own hurt egos.
I’m not trying to gloss over the fact that sometimes people totally suck. A lot of times, in fact. Especially when you feel like you’re dying and your own family tells you that maybe if you quit having such a negative attitude you’d feel better. Those people suck. But again, those people can never know what it’s like to live our life. Do they deserve a modicum of grace in their ignorance?
We have an illness that’s fraudulently denied by the medical establishment, and we understandably need emotional support from loved ones to validate our feelings of betrayal over the injustice. But to add insult to injury, the very people we turn to for support end up siding with the disease denialists. Then we think that by telling the story of how sick we are, how we *almost died*, how our family and friends dumped us, how we can’t afford treatment, or a home, or food, we will somehow convince other people that our family and friends were wrong.
People inherently believe that they are good and righteous, and the unfortunate truth is that they are mostly too self-centered to realize that they actually suck. Still, if we put ourselves in the abandoners’ shoes, would we have passed the same judgment, or would we have been a comfort to them in their illness? I believe that in most cases we would have done the exact same thing as they have done, because after all, we can’t know what it’s like to live another person’s life. We earn humility in our suffering.
Enter Social Media. What happens is, we tell our personal stories, we do the “Faces of Lyme” thing, which, for 20 years has never worked, and our message ends up circulating around the Facebook Lyme groups with nary a view by an outsider. (Nary–never thought I’d use that word, but there you go.) If anyone outside of the Lyme circles sees your “Face of Lyme,” it’s probably somebody who sucks–who hasn’t lived your life, or earned any humility. Someone who’s likely to abandon a loved one at her time of need. They just don’t care.
I GET that we need validation. I GET that many of us have no family or friends to whom we can turn for emotional support. I GET that we all want to do something to change this horrid situation, despite many being disabled or bedridden. You want to be an activist but are unable to protest or lobby? Here’s an idea.
Who said “I don’t know what it’s like to live your life”? A nun. A woman who devoted her life to the service of people in God’s name. She knows that she cannot possibly fathom the depth of your suffering, but she believes that you are suffering very deeply. She believes you.
I propose a spiritual awareness campaign.
If you’re a person of faith, tell your priest/pastor/nun/rabbi/guru/preferred religious leader that this injustice is taking place in our country and around the world. Tell OUR story to the people who believe other people because that’s what they do. And magically, other people BELIEVE THEM. Tell OUR story to those who have not only a moral obligation, but a spiritual obligation to do something about it, even if that means simply praying for us. There are well known studies on the power of prayer.
Stop telling your personal story and only tell OUR collective story. Show them that this is not about you, but about the millions upon millions who are affected directly or indirectly by a pattern of scientific fraud within the government, and the subsequent fleecing of the entire medical establishment. Tell them that our fellow Lyme comrades have it worse than you do. That many are unable to work, yet are denied disability due to the falsified Lyme case definition. Tell them that families are financially devastated and people are being left to die alone in their cars, in the woods. We know it happens. Tell those stories. I guarantee it will make you feel better inside than telling your own.
Tell OUR story to the people who don’t know what it’s like to live our life, but who will admit it openly instead of lashing out in fear. Tell them we need reinforcements of both the physical and spiritual varieties. Tell them that you know they will believe you, and that it brings you great comfort, but the others still need help. Amen.