I subscribe to news feeds regarding Lyme disease, and people are always sending me the same articles. I keep reading headlines that Avril Lavigne released a worship song. Avril Lavigne’s new single crossed over into the Christian markets. Avril Lavigne crossed over into Christian music. Avril Lavigne is now a Christian musician. Avril Lavigne prays to God. Avril Lavigne is God.
If you care to look beneath the sensationalist headlines and vague click-bait, you’ll read the real story, and like Lyme itself, it’s ugly. The media and industry spinning the utter destruction of disease and Avril’s resurrection from the grave can make you more nauseated than the last round of Flagyl.
The story behind the song, “Head Above Water,” touches us deeply. We’ve all been there. (If you have tick-borne diseases and haven’t been there, grab a floatie, the water’s about to get rough.) In her own words:
The first song I am choosing to release is called “Head Above Water.” It is also the first song I wrote from my bed during one of the scariest moments of my life. I had accepted death and could feel my body shutting down. I felt like I was drowning. Like I was going under water and I just needed to come up for air. Like I was in a river being pulled in a current. Unable to breathe. Praying to God for Him to help me just keep my head above the water. To help me see through the stormy weather. I grew closer to Him.
(original letter on avrillavigne.com, since removed)
Amen, sister. You’re not a real “Lymie” til you’ve spent the night gasping for air and staring the Grim Reaper in the face from your sweat-drenched bed. Forget being brought to your knees - they are cut out from under you, and you have no choice but to fall on your face before God and beg for mercy. You are broken, useless, and drained of all life but that which only the Creator can impart. It’s a terrifying, humbling, beautiful experience to meet your Maker on this side of heaven.
But the story continues: “A single bug bite can f*** you up hard”… “I’m taking my life back into my own hands.”
Now, I’m not here to wax theological on whether or not Christians can or should swear, or give an interview so distasteful that I won’t link it to my page, or pose for a magazine shoot wearing no pants (it’s from Billboard, October 2018, for credit’s sake), nor whether it’s wise to take your life into your own hands after desperately throwing it into the Savior's.
Rather, I’m here to point out, to any other Christians who noticed this strange dichotomy, that we have a quite perfect example of what Lyme is doing to your brothers and sisters; you need to be aware of it, and you need to show us grace for it. If we don’t have you to bring us back to reality with open arms, we’re in danger of jumping ship for good. This is not about me and Avril Lavigne, this is about me and myself.
Tick-borne illnesses mess with your brain. Lyme spirochetes cause inflammation and can attack the central nervous system. Bartonella is known for causing rage and psychosis. Babesia destroys your red blood cells and makes you feel like you’re dying. As if that isn’t enough, the sheer isolation of having the disease, of your life screeching to a halt and crumbling around you, of everything you love and enjoy being taken, contributes to Lyme victims spiraling toward suicide, possibly homicide, and at the very least, severe depression.
I’ve told people that Lyme disease is the reason swear-words exist. Sometimes no other words will do. I love the way travel blogger Jeremy Scott Foster puts it:
When you tell someone you’ve been diagnosed with Cancer, the universal response is, “oh f***, Cancer. Cancer. YOU HAVE F***ING CANCER.”
When you tell someone you have Lyme Disease, the response is usually, “Oh no, I know somebody who had that. I heard it sucks. I hope you feel better soon.”
Look, I know—the C word is a sensitive subject. But it’s the only disease that I know of that elicits the visceral “oh f***” reaction that I wish people had to Lyme Disease. When someone tells you they have Lyme, your response needs to be, “OH F***.”
This quote spoke to me. It’s raw, it’s real, it’s how we’re all feeling inside but too ashamed to say it. However, since this type of language is frowned upon in my circles (and my mind), I was happier when I discovered a less crude word used in Chinese Medicine: gu.
I found chronic parasitism reflected in a huge area of classical Chinese medicine that was called Gu zheng, or Gu syndrome, which essentially means “Possession Syndrome”…
Gu syndrome actually means that your system is hollowed out from the inside out by dark yin forces that you cannot see. This not seeing often includes Western medical tests that come back negative for parasites. So from a certain perspective, AIDS falls into this category, with body and mind being hollowed out from the inside out, without knowing what is happening. Gu syndrome originally meant “black magic.” To the patient it felt as though someone had put a hex on them, without anybody—whether it’s the Western medicine community or, in ancient times, the regular Chinese medicine approach—being able to see what was really going on.
Historically, the term Gu was first introduced as a metaphor for stagnancy, debauchery, degeneration and hidden evil. The words… are mentioned in one of China’s earliest historical records as a reference to black magic used to kill or confuse others, “Shamanic Gu practice entails the administration of poison to people, causing them to forget who they are”… The Book of Records (Shiji), moreover reports that in 91 BCE a Gu incident resulted in the annihilation of tens of thousands of people. The unsuspecting victims were reportedly killed by the black magic practice of putting spell-cast wooden puppets into the ground close to them… In this context, the term ‘Gu’ describes a situation where the attackers were in the dark, while the victims did not know what was happening to them. It was this original meaning a type of yin (hidden) evil that is doing harm to people’s mental and physical well being…
Gu. Possessed. Hollowed from the inside out. Poisoned to forget who I am. A dark hex which medicine cannot explain nor cure. Besides my stomach being ripped apart by doxycycline and running out of options, this understanding is one thing that drove me to Chinese Medicine - terms that finally validated exactly how I feel. Western medicine calls it inflammation, psychosis, Lyme disease, Bartonella, Babesia, Epstein-Barr, depression, bipolar disorder… but none of that describes the horror of what I feel. Empty, robbed, and possessed.
One of the symptoms of tick-borne diseases most difficult to explain is the deceptively innocuous “brain fog.” Along with depersonalization, it is, perhaps, the most dehumanizing of the invisible illnesses. It can most easily be described as “spacing out.” You do not feel fully present in the moment, in your mind, in your very existence. While you speak, and work, and carry on with life, people do not realize that every word, every action, feels like a lie. It is inauthentic. You are hearing yourself say the words, and you might even mean them; you might complete a task and do it well; but inside you feel like you put the controls on autopilot, and left yet again to search the deep dark wilderness for your MIA brain. You have little to no recollection of moments in your life, and what you do recall often feels like it was just a dream you had or a movie you watched. Your past, your memories, your very self, begins to fade away.
The other terms that will never suffice are behavioral changes, mood swings, irritability, depression, and rage. Those are symptoms of puberty. Of menopause. Of a million different disturbances in the endocrine system. These are not mere symptoms to Lymies, these are a life of possession. We can watch ourselves melt down, cry incessantly, scream at the ones we love the most, burn with anger at petty things, hurt feelings, hurt others, hurt ourselves. And we can’t stop it. Possessed.
I'm With You
Somewhere in all the mess, I find clearings. Sometimes the demons rest, and I live, and I create, and I write, and I dive for pearls. I could say I hope I won’t be judged by what I do when my brain is inflamed and flooded with endotoxins from dead spirochetes, but I know that’s not possible. Some people will hear my anguish and screams, and watch my life fall apart and wonder how I could praise my Savior with that mouth. Relationships will fail, and people will be alienated.
That four-letter words and demons and ancient hexes are juxtaposed here with my usual Bible excerpts and joy-clamming is not a change, or a mistake, or a sin. It is my life. It is all of our lives, the classic battle between good and evil that will plague us to the end. Seeing my own failures and helplessness played out every day in my own flesh helps me realize that we all have our demons. The people that are hardest to love, hardest to reach, hardest to be comfortable around, all have their own gu. Because God is able to love me in the midst of my possession, I hope I will learn how to love others in the midst of theirs. It’s scary. Sometimes I’ve had enough of my own darkness, I don’t want to venture anywhere near anyone else’s. But I don’t have to make it darker. We all need a little more patience, a little more grace.
So while I was on a good run here, learning all the lessons and beautifying the ashes and whatnot, I went dark for a while, and will probably do so again soon. Most Lyme bloggers do eventually. Once we finally start to feel again, we want to feel it all - see it, taste it, laugh, love, and get out. We want to forget this whole thing ever happened, because it took years of our lives, and we don’t want to give it anymore. And when we flare and herx and relapse, we don’t want to talk about it. We are grieving, and don’t want to mar our own encouraging words with the reality. Lather, rinse, repeat.
Psalm 46 came up in my Bible reading: “God is our refuge and strength, a very present help in trouble.” Though God provides both when we are in need, there is contradiction in those terms. The strong do not need refuge; those fleeing to safety are the weak. Either way, God says, “I’m with you.”
Which Lymie are you meeting today? The warrior fighting for her life with passion and perseverance, strong in the Lord and His promises? Or the hollowed out, possessed shell who’s ready to give up, raging and tottering, weak and crawling for a hiding place? They both need you. Keep holding on.