Last night, I shared Chris's original letter to the masses....And tonight, I share with you my letter that was inspired by his.
I wanted to do something from the perspective of the loved one witnessing the pain of their lover/partner/friend suffering....and the utter feeling of helplessness that comes with it.
We are all susceptible to this illness; we are all human -- We can't forget that. We need to acknowledge and convey compassion when one is suffering, so that we may solve it together.
I hope you enjoy.
Thank You for Reading -
To Whom It May Concern — (Which should and would be everyone reading this);
My name is Casey Davenport. I’m a 28-year old illustrator living/working in New York. Those details aren’t really important, so I’ll skip the rest of the formalities.
I’m writing this “letter to the world” to inform you about a disease known as “Lyme Disease”.
It’s a disease most of us have heard of, but have never really understood…This would either be due to the fact that you’ve never experienced it first-hand, or second-hand, or read articles that are actually quite out-dated and sugar-coated.
While I am a hopeful, positive person — I will not be to the point of dishonesty: Lyme is a problem. A BIG ONE.
I was one of those people who didn’t think much of it until almost 3 years ago — when someone I loved dearly was stricken.
My boyfriend/partner, Chris Merritt — was and is an accomplished musician, writer, composer — a triple-threat. He’s a pure artist, through and through…World-traveled, experienced, and brilliant on levels I didn’t know were humanly possible — And he has contracted this life-dissolving illness.
We met in NY, right around the time when the symptoms started to appear…. That’s the secret tactic of Lyme; it’s mimicry….You run around to doctors who will misdiagnose it, and never receive the proper-treatment…Only giving the disease more time to embed itself deeper…
And that’s just what it did.
I watched our conversations go from “sinus infection”, to doctor-to-different-doctor (all giving a “drink more water” -type answers), to moving back to his home, hundreds of miles away, hoping to heal with his family… I watched, and listened, and tried to understand. I missed him terribly, but was hoping he would be safe and able to heal.
I’ve been through medical hell myself, suffering a caverous angioma bleed-out, grand-mal seizures, and emergency brain surgery. I “lucked-out” to say the least…But my perspective changed more than my brain physically did afterwards….
…This perspective, combined with my extreme adoration and admiration for my best friend, led me to journal everything. After we started our long-distance relationship, I logged day after day our conversations, his pains, conditions, doctor visits, treatments….Pages upon pages….All ending with the same result: A big, old question-mark.
I watched family and friends abandon him physically and/or emotionally; similar to the way I watched friends stop reaching out me after I had a seizure relapse in 2012….They don’t understand. You stop being social, even though a part of you wants to be…But the body is devastated. It doesn’t seem that this is possible until you experience this for yourself; it is all a taken-for-granted path we lead whilst healthy. But I assure you, it takes a toll on the patient more than you could ever imagine.
We found our way back to each other and now live and support each other. I have never been more happy in my entire life to find what I’ve found with him. I wasn’t any firm-believer in “soul-mates”, but Chris’s existence has certainly changed that. We continuously inspire each other, even when it comes to medical treatment ideas and thoughts of getting the word out about Lyme. The experience has turned this small-town little girl, into a grown woman, eager to help, love and understand the universe.
You meet someone like that, no matter what the circumstances, you want them in your life.
I remember thinking — “I’ll do whatever has to be done. I’m in this. “
And I refuse to relent. Our lives are more entangled and tighter with each other than this godforsaken disease is.
The battle of Lyme is truly a war.
When Chris would tell me how he was feeling, I envisioned a boxing match inside his body— In one corner, the borrelia burgdorferi (Lyme bacteria)— and in the other corner: the antibiotics.
And no matter which opponent threw a punch, he would feel it. He felt the entire fight going on…and it’s a match that has been going on for several years now.
The towel has not been thrown in.
Days are rough. Nights are rough. Like a cancer patient, you appreciate the “good days”, more than anything. I thrill at his smile and laughter; it’s infectious in itself to see him happy.
I’ve seen all of the side-effects myself. Chris can elaborate in detail, being the one experiencing these terrors; I can only describe them from my point of view— SEEING what he describes. Since most of you may be in the realm of my perspective, let me give you that perspective as an on-looker:
Imagine this: You are in bed with your husband or wife, you are sleeping rather peacefully— then to awaken to your partner violently kicking, turning, sweating, as if in a fever-fit.
They aren’t awake and they don’t always awaken. You watch; you place your hand on their damp forehead as they scream out something unrecognizable and yet frightening…And in that moment, you get a glimpse into the vibrant nightmares they are experiencing. You feel helpless, regardless of whether they wake up or not. You can’t stop the nightmares.
Now imagine this happening every night.
Imagine this: You’re massaging your partner’s back gently and notice strange dark-reddish squiggled marks…They were not there the other day.
Then more strange lesions, or bumps in random areas; they keep appearing, then disappearing, then reappearing…like some horrific magic trick.
Imagine….after driving with them from doctor to doctor, pharmacy after pharmacy, inching closer and closer and feeling ready to kick this, to then watch your partner
succumb to the most overwhelming sadness and fatigue.
They can’t get out of bed when you do; they want to…but they can’t. They are feeling excruciating physical and mental pain that you can only see in their eyes…Again, you are helpless to it. You have to breathe with them, hold them, wait for the pain to pass.
This is only a glimpse of what I’ve seen…And I’m being slightly kind to you.
I love Chris and I love my life with him. We’ve read stories of husbands leaving wives, girlfriends leaving boyfriends, entire families abandoning their sick ones…I know his fear of this. I ran to him as soon as I heard the Lyme was worse— not away from him.
I felt that way then; I feel that way now. I know what it’s like to feel both abandoned and loved. I want him to feel as much love as I feel for him. I wouldn’t trade this adventure for anything in the world. We want to teach people about this, while continuing to grow and learn ourselves.
Don’t mark me as a wishy-washy type (though yes, I’m all heart) — but love is truly one of the greatest things human beings have to offer each other. It can help us progress.
I’m sad only when he his sad; our minds are both creative and scientific — We know this is a dark place and these are dark times. We know of the “chosen ignorance” and indifference the world seems to have projected onto everything. We are neither cut-throat pessimists nor optimists at this point.
We are ever-curious, and anxious for REAL answers.
I encourage all people to start to at least consider thinking this way.
I wish you health, strength, courage, and love.