I just got off the phone with a friend, my best friend from college, I love her in the very center of my heart.
She’s sick, really sick ~ battling Lyme Disease for over 10 years, it’s such a sad story, hard to tell, think about, share.
She lives up north, I live down south, distance is our truest separation.
Her life is one of confinement; she cannot do the simplest things of life, she is wheelchair bound, eyesight ravaged, hands that use to create magic, now lie uselessly by her side.
She spends endless hours alone, confined to her room, unable to do anything more than wait for her caretaker to arrive to move her from bed to chair, chair to bed, bed to chair, to me an endless cycle of sadness. Her strength to continue inspires me on every level.
For several years she refused to speak to me, I kept trying, finally she relented only to tell me that she didn’t know who I was in her past, no idea of who I would be in her present, her future.
When she whispered, “I don’t know who you are…” my heart froze in pain, my mind searched for reason. We spent years together, she was my roommate, my sister, my family as Lyme erased our history.
It taught me not to take things personally, it wasn’t that she didn’t want to reconnect with me, it was that she couldn’t connect with memories of her past.
On May 6th, 2018, Bob from Big Bob’s Burgers allowed me to hold a fundraiser for her at his place (Bob also suffered from Lyme Disease and is now running a restaurant in heaven). With the help of my friends, we played music, had a silent auction and raised money to send to my friend. It wasn’t so much the money, it was the act of strangers coming together to help her that mattered.
I call my friend at least once a week, usually every other day, just to say ‘Hi” and check in, to let her know that she’s loved. She’s kind enough to listen to my songs over the phone, it means a lot to me.
Today, was tough, she says she’s lost her confidence in life, that she can’t even help herself, let alone others.
To this I replied, “when things in my life are tough, when I feel lost, when I need hope, you are the one that I call. You are my Jiminy Cricket, my voice of reason. So, if you think that you are powerless, know that you have power, for in my darkest times, my frustration, impatience, my failings, you are the voice in my head that guides me towards always being a better person, you are the voice in my head that keeps me from being a dick” (she loves that saying, “don’t be a dick!”)
Then I told her a story of how I bought a ceramic elephant, because I love elephants, the way they care for each other, their high levels of emotional connection, their loyalty. She said to me, “Then you’re an elephant”
Nothing, I have read about Chronic Numerological Lyme Disease paints an accurate picture of my friend’s life. It’s a disease that few talk about, know about or care about, but let me tell you that it’s taken a beautiful woman’s life down a lonely, dark back alley.
Perhaps this is why I feel bothered when people complain about the simple things in life. If you’re stuck in rush hour traffic, at least you have a car, if you don’t like your job, at least you have one, if you’re fighting with your kids, at least you have family.
The words, “I’m not happy” ring empty against my wall of experiences. I held my mother when she took her last breath, lost a nephew who was only 8, played my guitar for the dying, always honored to bare witness, always humbled by my generous share of healthiness.
I’m sad, that’s it, simply sad. As I said to my friend on the phone when she said, “All I can do is cry” and I said, “well, let’s cry dammit!!!” I have to say to my self, it’s okay to be sad, “well, let’s be sad dammit!!!”
Why am I sharing this? I suppose it’s to hopefully inspire us to reach out to those who can’t reach back. It’s to say, “well, let’s be Elephants, dammit!!!’
I hate few things in life, I hate Lyme Disease, the lack of government funds to find a cure, the lack of understanding, the lack of information, the lack of help.
If you want to learn more about Lyme Disease, check out this website: https://www.healthline.com/health/lyme-disease-chronic-persistent
If you want to help my friend, say a pray for Marcia (make sure you also say a prayer for your self)
Today’s Musing: “In times of darkness, the only light one might see if yours reaching in” ~ Katrina Curtiss #girlwithguitar