Thursday, March 31, 2016

Letter # 3: Casey - "All is Quiet on the Western Front"

Dear Readers;

It has been a while since my last letter - and a lot has been going on. While Chris and myself are rather private and not apt to post photos or videos on any details of these times - we intend on being vocal on the battle itself. And, since I am experiencing all of this from the perspective of the friend and partner who is not ill, and the healthy messenger who intends on fighting and seeking truth -- being vocal is something I CAN do.

We have made some healthier lifestyle adjustments, with more to come. This all isn't something that can be prescribed, but comes highly recommended and we are taking on in a gradual manner.
In the end, Chris ends up being the "guinea pig" of sorts; the most frustrating thing remaining to be not only the lack of solid solutions, but the lack of emotional/mental/philosophical response from our culture.

(This surprises me, as we have made some incredible strides in medicine...And I am NOT saying things aren't being done....but more needs to be spoken of and acknowledged for serious actions to be taken.)

It is too quiet.

Even now - I have spent many hours at the library... combing through book after book...
At home, we go through source after source, site after site...
He and I suck up any new information we can find to use to connect the dots; to fill in a billion-piece puzzle with deformed the point of frustration, where we just want to hammer them in until they fit.
We still press on together - through the vague shadows of thoughts, scenarios, suggestions, attacks....but most of the time--- silence.

It is too quiet.

I was that ignorant once; so was he.
I still am -- We both still have so much to learn.

I think with so many things, people remain this way....Ignorant or indifferent -- it's a survival tactic.
And it makes sense. Shut it out and it can't hurt you. I understand that.

But, there must be a balance (something I admit I have always struggled with).
We as people, have the capacity to learn and take action....
Call it whatever you want-- In this scenario, I don't particularly care what you believe in -- We are a creature who has the brain-power and creativity to improve our MANY ways. It is NOT perfect; there is no such thing.

Everything we have today, is because someone kept thinking and doing-- beyond the penciled-in lines provided.

Good medicine -- is this capacity -- to think, learn....and also, to love. Not trying to sound all wishy-washy or whathaveyou, but compassion is a powerful thing.

Be vocal.
I am.
He is -- he is continuing to make the most incredible music of his life. He isn't going anywhere quietly.

We're in a strange time with a plateauing system....

....Let's make mountains and then sing from them.

Love & Cheers,


Friday, January 15, 2016

Letter #2: Casey: "To Whom It May Concern....(Everyone)"

Evenin' Everyone;

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.


Thursday, January 14, 2016

Letter 1: Chris: Not a "Rich Man's" Disease...

Good Evening, folks.

The first letter on this blog will of course be the first letter that sparked the idea.

Chris had written this in response to a person who kept claiming that Lyme disease concern was a falsity; a "rich person's disease" (I believe "Trump" was used...)-- Saying that it is "responsive to common antibiotic treatment, non-fatal, non-communicable", etc...It goes on. Someone rather confident in the nothing-ness of this illness or the people it infects, despite the fact that people have actually died from complications, after suffering for DECADES....To have any hope of curing it-- the window is tiny, the proper diagnosis never within easy reach, and beneath the skin, the bacteria flourish...undetected....No wonder it's doing so well and has now been detected in not just ticks but mosquitos...

...This person was rude and disrespectful. Moreover, an example of someone with rather cruel intent, going on to a forum where people discuss and try to figure out their lives and situations..peacefully. This person's posts on this community's forum were in bad taste.

Chris wanted to take a stance for himself and others in his condition...And his voice came out:

Thank You for Reading--

Hey there. 
 I don't know who you are, but I wanted to reach out, to just give you an alternative perspective on Lyme — and all that that entails.

I'm Chris, I'm 33 and I live in New York.  I am a musician, an artist, a science lover and thinker.  I'm secular (in fact, almost anti-theist), and I have no patience for pseudo-science, conspiracy theories, and the like.  I've lived in many places, including LA, Virginia, NY, and Salt Lake City and have developed a keen eye for socially-inspired, superstitious philosophies of different groups.

I was a hard worker.  I had perfect SATs and perfect grades.  I studied commercial music and jazz piano in college, went on to be signed to a label in LA, and eventually toured the world (I had a mini hit in Japan).  As the indie/alt rock industry started to change, I was in advertising in NY and was finally making "adult money"...for literally one year of my life, I made over $28,000 in a year.  For the first time.  Before that, I was always working one crappy side job or another while working hours a day writing music.  I've written thousands of songs; it’s my life, my art and love.  I was always broke as hell.  Because I got lucky and someone at a famous ad agency in NY loved my band and hired me, after two years of pitching ad music, I finally won some huge campaigns and made an average-to-low income for the first time, but to me, I was living like a king.  I could afford new microphones and a decent Korg keyboard.

I'm just setting up my personality.  
I'm obsessed with naturalism, objective reality.  I was in doubt about lyme for months when I first had nervous system issues and never-ending flu symptoms.  I too thought I was living in a world where such diseases were impossible, and it was more likely that rednecks were being hypochondriacs.  I hate superstition.  I thought my way out of christianity as a 12-year old.  I was brought up to never call in sick; I’m the kind of guy that would just pop a Sudafed and drag in to school or work if I had a cold.

Without boring you on my hellish journey through Lyme disease the last two years, I want to paint you my current situation.  I can fill you in on all the details if you need them, but for the sake of this message, I ask you to believe that I'm competent, intellectual, open-minded..... and I believe strongly that I am infected with Lyme disease.  And remember, two years ago: living my dream, finally successful after a decade of struggle as a musician, and zero health issues.  ZERO.  I ran daily; I worked out and loved it.

Here's my life now:  I wake up in the morning with a feeling of a hangover (no drinking anymore, of course).  I wonder if its 3 AM — nope, 8:30.  I wonder how I'm going to make it through today.  My wrists and ankles twitch in protest (charlie-horse-like muscle spasms).  My neck, just above the site of the tick bite two years back, feels strange, tight and painful... there's been a new sensation of squirming happening too (please, you may be calling my competence into question this very moment, again, just assume you can trust me like a good friend.  We probably would be if we knew each other.  I'm describing this as straightforward and real as possible). I stand up, dizzy, steadying myself.  My vision swims - this dizziness and visual strangeness continues through the day, although it lessens after an hour or two of being awake.  

My ears are making high-pitched noises.  Sometimes, my left ear makes an even lower-pitched sound, sometimes my right.  But always, the high-pitched whine is there.  I'm starting to not notice it anymore, but when I listen, it’s there (again, you’re thinking, like many docs I’ve seen, “Well; this guy’s a musician”….. Remember, I've asked, for the sake of this message, just trust me.  It’s not an effect from loud music.)  I know my ears intimately as a mixing engineer and producer, I've always been obsessed with ear plugs - I buy them in bulk.  I received frequent hearing tests and had perfect hearing, and all these symptoms showed up at the same time as my many, many other neurological and flu-like lyme symptoms…

…OK, ok, I'm going to stop justifying every possible symptom and just assume you can believe me from here-on-out….

The pain is in my stomach, and throbbing in my head.  I don't really notice the headaches anymore.  I try to get going; after some coffee and meditation and reading for two hours …Only then, I finally feel somewhat like I'll be able to drag myself into work.  I teach music in Queens.  I take the antibiotics and supplements “required”, though I have no idea if they're even working.  Keep in mind, however, when I’ve given up the antibiotics in protest, weeks later I can’t even move or get out of bed..... Clearly, there is a pathogenic element to this.  And it feels like a disease.  A person knows when he/she is sick - Again; just gotta trust me here.  
Or, ask my girlfriend/partner - She could probably convince you even better.  

I am tired all the time.  Not tired, like depressed or fed-up; it feels like this god-awful combination of a hangover, the flu, and as if someone beat me over the head with a frying pan.  It’s hard to focus and finish things.

My singing voice, my life, my bread and butter, has all but disappeared.  It's a very neurological thing— to sing.  It's very hard to summon the energy to sing, and even then I sound different.  Seeing an old friend lately, she ran up and embraced me, and then frowned, looked sad, and said.... "you sound different, your voice is different."  My playing and songs have become slower.  My gait has become different, I struggle to keep balanced.  

Because Lyme is such a controversial disease, everyone just assumes I'm full of crap.  Do you have any idea how nightmarish that is?  Think about it.  
Think about being held down in every aspect of life by this obviously pathogenic weight, and not even getting credit for it.  
Think about the daily struggle to go to work and still barely being able to afford medicine or my bills.  

  My only saving grace is my girlfriend, who believes me 100% - She’s gone through having a cavernous angioma— a malformed blood vessel/ tumor-esque brain condition, which caused her to have seizures . Before this happened, she had a frightening, uneasy feeling, and “medical experts” just thought she was full of it; no one knew or understood and wrote it off as something not worth worrying over …Until, of course, she was found purple-lipped and unconscious from one of several grand-mal seizures.  She received a “simple” brain surgery procedure and it’s fixed now..... 

 …But I think it’s why she didn't judge me when everyone else, even old friends and family, did.  We started a relationship, and now she's seen every aspect of this disease.  I woke up this morning to her in tears... She said I was twitching and writhing in my sleep.  I have intense dreams, unlike any I've ever had - they are full color, visceral, nightmarish and they are full narratives - they go on and on with consistent characters; it’s hard to convey here. 
  I didn't dream often after being 12 years old.... Now, this has been occurring every night.  I've lost significant bladder control, libido is all over the place (some weeks I'm over-horny and some weeks I'm an asexual little frog).  Cold and heat treat me like a 90-year old man.  I shiver uncontrollably in brisk conditions.  I have strange bumps and red lines (a symptom of Bartonella..... very well documented) appear on my back.  I have strange red bumps on my ankles.  Small cuts don't seem to heal very well.  Two years ago, a cut was healed over in like a day.  I felt like Wolverine from X-Men..... I often bragged about my super-healing ability.

Read the history of AIDS, dude.  
People aren't good with disease, especially when its hard to see on the outside.  Especially when its the outsiders getting it.  You said its a “rich person’s” disease; I just wanted to give you the truth of my situation.  
I'm broke and scared.  I don't know what to do. I don't recognize this world, where it seems like people would rather hold it against victims than help them, in line with whatever their bias is.  

I want to propose a bias to you: 
We've been sold a new religion - that we're living in the future, in an age where these kinds of infections are a thing of the past.  We're being sold that times are better than ever; that we've finally 'made it'.  
I want to remind you that these are the times in human history when things truly go to hell in a hand-basket.  Evolution and nature is ever-vigilant.  Vector-borne disease has been a surprise every time.... Humans realize it after it’s too late.  Vector-borne disease is a big deal.  I'm telling you, through years of science research and learning, through years of thinking, philosophy, and books on disease history..... nature finds a way.  It has a unique opportunity right now.  It suppresses the immune system, and stays clinging on in the blood of humans - a population, by the way, which has superseded any vertebrate species in the history of the world.  A population which interbreeds and intermingles with each other globally, on a scale never before seen.  We support more species of life than any other animal has, ever.  This is a unique, novel situation.  

As I mentioned earlier, I despise psudeo-science, and many of the “lymies” really get to me with their BS remedies— rife machines, snakes oils, nonsense.  As far as I'm concerned, this is a textbook example of bias on both sides.  But I've seen teenage girls in wheelchairs, wise older men losing wives…These aren't the kind of people that have any motivation to fake or exaggerate.  
I HATE telling people I'm sick.  I had two bosses begging me not to leave.  I was their most promising new writer, this was everything I worked for my whole life.  
I lost my two bands in NY who were almost done with new records.  I am nothing but an unbridled passion for success, music, and science.  
I've lost everything.  Why?  What has whining about being sick gotten me?  I'm broke and my own family won't talk to me, because its so awkward and no one knows who to believe or what to do.  Why?  Why would I do these things?  
I would give my right leg to be rid of this thing.  I'm not kidding.  It wouldn't even be a hard decision, I'd whip off my pants and say, "Someone get me a bottle of whiskey".

This is a nightmare, man.  And it’s real.  And I'm broke as hell, so don't represent this disease like a “rich disease” — in some strange attempt to create more bias against it.  Is it really a case of mass delusion on a level never seen before?  
Now I ask you - if we're a humanitarian culture, why isn't mental illness just as big of a medical problem anyway?  It’s keeping people from living their lives; they still suffer profoundly.  

The claim of Lyme being psychological is not a justification for hate or flippancy.  Where's the love gone?  I mean it.  I've been to so many doctors who, when I walk in with my claims of Lyme disease, are already rolling their eyes at me.  
Do you have any idea how much that hurts?  
Do you have any idea how much I just want to figure this out and get on with my life?

The bias is real, and on both sides..... but take it from one science-guy..... I'm convinced this is a novel vector borne disease, with the ability to suppress the immune system.  I suspect it also has the ability to release neurotoxins.  I suspect that it works with Bartonella to infect blood cells.  I feel like my whole body is in this weird low energy state.

I want you to notice that your only recourse is to call into question the validity of the sources - to question the people.  That isn't science, or love.  Disease is an ever-evolving, ever inventive monster. 

Wednesday, January 13, 2016

Years After the Bite....

Greetings & Welcome...To our new/latest project...

Casey D. here -- I have a few blogs with this site, all of which are for little art-projects done for fun and exposure....And this one is similar, but with a deeper-vibe. It's creative and intellectual, and raw.

Raw and real...because these letters are real.

My partner, Chris Merritt, I've mentioned several times in my other posts -- about his music, his mind, and his on-going battle with Chronic Lyme Disease.... This un-sung epidemic (and I mean un-sung to it's fullest; it has a voice, but it needs to SING OUT)....

He is suffering; his art is his life and this disease tries time and time again to beat him down.

This blog is to inform you and hopefully teach you...And if you ARE already one of those who understands, maybe give you a greater sense of community....

...You are not alone.

Recently, Chris wrote a very detailed and eye-opening letter to a rather sour post on a forum. Chris wanted to be heard, and his letter is exceptional and lays out everything about him and what he's felt (and still's brutal) He holds nothing back -- He wrote as if he were speaking to this individual.

It inspired me so much, that I thought, "Hey what if I WRITE a letter from the perspective of the loved one watching someone go through Lyme?" --- which really is my position.

We both talked and loved the concept of bringing the word out about this "silent epidemic", by giving it a personal voice...We read and hear personal stories all the time; it's devastating to know that thousands are suffering without any justice, help, or resolution.

Here's our contribution to end the silence.

Stay tuned and we hope you will follow us on our journey.

Love & Cheers (to your health)

~ CD & CM --"C^2"