Today is that weird line in the song “It’s the Most Wonderful Time of the Year,” that inserts “scary ghost stories” in the middle of holiday greetings and hap-happiest seasons. It’s going to be a Grinchy week.
Have you seen or read “A Christmas Carol”? (Read synopsis) It’s creepy. It’s not a holly jolly story. It’s dark and petrifying, full of chains and ghosts and graveyards. It’s enough to scare bitter old Scrooge senseless… almost. Even in this nightmare, he is in denial, until the frightening climax when he sees his own name, and future, on a gravestone. In a panic, he begs to know this is not his sealed fate. It’s only at his own end, terrified and on his knees, that that he truly transforms into a new man. The pure joy he has waking up on Christmas morning to find life left in him, time left to change, doesn’t come from cartoons or muppets telling him he’s a bad person. It only comes from being rescued from the brink of death, from the utter horror of facing his own ghost.
And so it is with Lyme.
Ask anyone with Lyme-MSIDS and they’ll tell you the same thing: Lyme is hell. You constantly feel like you’re dying. You’re terrified of everything. You are in physical, mental, social, and spiritual torture, completely helpless and hopeless. And all alone. No one can see what goes on behind the scenes, no one believes you, no one supports you. The doctors and scientists deny your reality, deny your humanity. You lose everything: your career, your hobbies, your personality, your friends, and way too often your spouse, your home, your savings, and your life. It is the epitome of loneliness and loss – the consequence of your invisible illness. But we have a saying: "You don't get it 'til you get it." You just can't imagine how critical prevention is until it's too late.
It is impossible to describe the sheer terror of Lyme-MSIDS. Hell becomes very real to you. First in fear of this physical pain lasting for the rest of your life, second as you become trapped in your own mind with a brain full of bacteria. One night I was rocking myself in bed, enveloped in pain-induced panic and three nights’ insomnia. I felt trapped in my illness, trapped in my fear, and trapped in the bedroom trying not to wake anyone up. The anguish behind my tears felt like it was going to explode my face. You’ve never seen an ugly-cry like a Lyme-terror ugly-cry. I felt so alone. And in that moment, I thought, “God cannot hear my prayers. He is not here. This is what hell is.” I expected to start hallucinating at any moment, to see demons crashing through the doors and windows.
Eventually they did. Later I was having another bad night, so I went downstairs to cry it out on the couch. I knew God often used my worst moments to teach me great things, and I prayed and prayed for hours for Him to comfort me this time. I was curled up, face buried in the pillow, crying, “Jesus, BE with me! Be HERE!” I felt a presence, a weight across my shoulders. Was He here? Somehow it wasn’t the peace I expected. The presence surrounded me, as of several figures. Angels? Were the angels protecting me? It still didn’t feel right. I didn’t hear voices, but rather sensed a communication. The beings told me that I could end my suffering right now. If I just gave up my will to live, it would all be over, and they would take me away. Away to where, I didn’t know and I hardly cared. For a moment I considered. Just let go. You can finally be free of this torture. Just exhale your last breath and let go.
One image came to my mind: it was my husband, up in bed, asleep, oblivious, and all alone.
What would happen when he found my body?
No, I thought, I can’t leave him. I won’t leave my pain with him. Terrified, I ran upstairs and buried myself in his arms.
After living nightmares like these, it’s incredibly easy to become a “Lyme evangelist.” When you’ve stared death in the face and watched your entire existence fall apart, you are positively euphoric over signs of remission, even the slightest relief of symptoms. You can’t help but to blurt out warnings against ticks and the medical system and the importance of good health. When your body stops working, you want to shout at everyone not to take theirs for granted. The danger is so real, and so close, we’d be selfish not to use our second chance to warn our loved ones of the epidemic.
And so it is with Life.
I’ve felt convicted for a long time that my priorities aren’t straight. The zeal with which I study, write, and drone on endlessly about Lyme is the passion I should be feeling for the Gospel. But I don’t. It’s easier to be armed with books, medical journals, conference notes, and my own records as "proof" of imminent danger. Sure, it invites a lot of backlash and eye rolls and most of the time I feel like I’m talking to a wall, but Lyme changed my life, and almost took it. I can’t shut up. But religion is even more dangerous than confronting the CDC and IDSA. All I have is a book of dubious authorship and invisible faith. And a lot of hurting people with short fuses.
My biggest drive in Lyme evangelism is that I’ve been there. I’ve seen it with my own eyes and felt it in every cell of my body. Few people can say that about hell, especially those raised in Christian homes where the reality has always been that we’re saved from it, so we don’t have to worry about it. It’s way too uncomfortable a thought (and theology!) to dwell on something that isn’t our destiny.
But can we really appreciate salvation, can we be truly thankful for Jesus, if we don’t see our own names on the gravestone? Can we be changed, fully and to the core, like Ebenezer Scrooge, if we’re not scared senseless by our impending doom? It was only in experiencing a true hell on earth – a place where I felt God had abandoned me in every way – that I can appreciate the horror it would be to be stuck in this forever, and the relief that I am not. The eternal consequence of the Invisible Illness is death.
Hell is misunderstood much like people misunderstand Lyme; they think it must be nice to not have to work, to stay at home all day watching Netflix, to go out in your pajamas, to do whatever you want, but nothing is further from the truth. It’s pure misery. Fatigue. Boredom. Sickness, loneliness, guilt, insanity. They have no idea.
People treat hell the same way: it must be nice to do all the things Christians say we can’t do: one big orgy of sex, drugs, and rock-and-roll, a party with all the people you want to see again who you know didn’t make it to heaven; but nothing could be further from the truth. The Bible says it is darkness, eternal fire, and worst of all, complete separation from God. It is therefore also separation from all of God’s good gifts: love, companionship, peace, laughter, and yes, even sex. It is worse than we ever dare to imagine.
And so it is with Christmas.
While I want to be very clear about why Lyme is torture and to be prevented at all costs, I try not to dwell on that fact when speaking with a newly-diagnosed Lymie. They are likely already feeling the heat of the flames, and it tends to scare them even more to walk into a “support” group full of people telling horror stories. It’s a fact they need to face, sooner rather than later, but mental health is so critical that I would prefer to fill their mind with the hope they’re going to need to fight the fire, rather than tell them just how much of a burn they’re in for. However for those still in denial, I’m tempted to carry a flamethrower. They need to get help now.
Christianity is also a delicate dance around the reality of hell. Most people’s first encounter with an evangelist is with the fire and brimstone guns blazing. True and important? Yes. The right approach? Maybe, maybe not. I don’t enjoy writing a post about the horrors of hell in a Christmas series meant to encourage the downtrodden. But if you’re going to truly appreciate the cure, you need to know what you’re being cured of, and the death you’re being spared. If you’re going to be filled with Scrooge’s unbridled joy that ignites actions of singing, giving, and loving, you need to be visited by the Ghost of Christmas Yet to Come - a dark and terrifying place - so that this is a gift you: we will wake up on Christmas morning with a second chance, to treat this Illness and take the Cure.
Read: Luke 12