I Have Lyme Disease, and That's OK

I’ve written very few personal posts recently, mostly because I’m overwhelmed trying to finish a book proposal and get it submitted, but also because I don’t really know what to say. I’m sick of reading ignorant people talk about all that they don’t know, and since I’m spending all my time writing for my book, the blog has tapered off—I refuse to add to the cacophony (def: racket). But today I’m adding to the racket because, well, I’ve got something to say that’s worth saying.

What I’m trying to say is I’ve been paralyzed by (multiple) debilitating diseases, the main one being, as we’ve just found out, Lyme disease. And that paralyzation has creeped in to change me, deeply—more on the inside than out.

The life of a chronically ill person is always ironic, but even more so for those of us who aren’t in wheelchairs. Because day by day we struggle just to exist, but when we come out of our holes we look and seem 100% genuine human and so everyone treats us as such. But when the lights fade and everyone goes home, it’s back to the recliner for some cryo-sleep: aka staring at the ceiling trying to control your breathing, slow your heart down, and recover.

And I’ve just given up trying to communicate that to my friends. They can’t identify, and really that’s totally OK. This isn’t some contest where we all show off our battle scars and pull rank on each other—that’s what sick, narcissistic sufferers do, and there’s no place for that here.

But so the reason I’m writing is to communicate what I can’t communicate. To tell you that things happen behind the scenes of my poor little life which would shock you, and it happens all the time. I’m writing to tell you to stop believing the lie that life is about protecting yourself from pain, about curating your best life now, about expressing yourself to everyone, always, as if life were literally about you. About selfies and the beach and vacation (no, you don’t deserve it, you just tell yourself that to stop the nagging feeling of your inadequacy, being that you need a break while everyone else in the world keeps digging trenches for pennies). I’m writing to give voice to my friends who are even more sick than me, who need you to treat them with love and respect, who need you to know what you don’t know.

A college buddy of mine was diagnosed with brain cancer a few months ago and has 3 years to live. He’s 23 and he spends his days throwing up. Another friend has been through cancer 3 times already, but it’s come back. The same day she found out, her Dad died. Another girl has lupus and lives every day in pain and worry—maybe she’ll break out, maybe her trip will be ruined, maybe life won’t ever be kind to her again. Some girl in England I found on Instagram has CFS and lives in a wheelchair—her parents feed her, brush her teeth, and bathe her. One guy killed himself because he lost the meaning of life when he lost his ability to work.

I don’t know what it’s like to know I only have 3 years to live, and I don’t pretend to. I call my buddy and cry with him, talk about Jesus, and listen to him go on and on in his gangster-swag about His Savior, slurring his words through chemo-brain. And I listen, with fatigue-brain, and we both know. We both realize that we can’t claim to worship God sufficiently, because we can’t even do His thoughts justice. Our bodies are so weak and incapable, we can’t know Him like He deserves to be known.

But he and I, we know that. And we know God loves us anyway—weaknesses and all. But when my buddy steps out of his house, he meets a bunch of smiling self-worshippers who try to tell him all the great things that they know (the main being how awesome they are). He watches the sun set over the Pacific and realizes, with deep pain, that he will never be able to communicate to his lost neighbors what he feels. He can never convince them that this beach, this California coast, isn’t golden; it’s doomed to die, just like him…just like them.

So I think it’s a life mission of mine to humble the proud and bring levity and reality to The Illusioned. To stand up after my buddy is gone and say, The world needs a Savior and only a fraction of you know it. I’ll say it if nothing else but to rescue them from the lie, to break them free from their pitiful distractions, their little pleasures which curb their passion for eternal bliss as if on little candy bars (sometimes, literally).

Let me stand up and say, as a small voice on a little blog, that Life isn’t what it seems. You don’t know what you don’t know, and if my buddy had his way, I’d preach this to my death, because this is the message of the Gospel. What you don’t know can kill you, and if it isn’t killing you, it’s killing your humans around you.

So stop drinking the kool-aid and open your eyes. Ask yourself questions and be ruthless with yourself. Think. Challenge your thoughts and listen to the way you treat yourself. You may find yourself conversing with yourself, reasoning with yourself about things that don’t matter. Stop the flow, and step back, and ask yourself, Why do you do what you do? If you were to die tomorrow, or worse, if everything you loved were ripped from you, and love itself were removed from you, what would you do?

You don’t know, do you? Of course you don’t.

So take that humility into life and love others with the Love you feel from God. Because He loves you, and He shows you every second of the day in good things. But it’s your obligation to stop ingesting cake and ice cream every now and then and turn to Him, and ask yourself the hard questions. Stop eating for a few days, then ask yourself why you’re not happy. The answer will be: Because I require sugar to make me happy. Therefore, is God your heart’s all-in-all, or do you just say that? Is it not true that your heart’s all-in-all is God + food?

Of course our hearts are divided. Always will be. But my buddy will tell you, the closer you get to death, the purer your desires get. The more you value suffering and the more you actively avoid intoxicating, flashy pleasures because they feed the lie. But it’s not that you desire less, as if saying no to distractions were an act of masochistic discipline, but you desire MORE—far more than American consumerism can give.

And so you do things like weep over the Bible, preach to lost people who bump into you in the grocery store, blog on the sad internet, carry other people’s burdens, doing the work of ministry. You seek out the pained and broken hearted and try to experience it with them. Because life is about the drama of redeeming evil, not about bolstering your personal brand. You actually, truly begin to value pain, and become thankful for it, because you see your need for it—you need it to realign you, to straighten you up, to break you down and build you back up with Truth.

Because then, when you value what is truly valuable, eternal life starts to break through the time-space continuum…and it’s addicting. Everything fades and He becomes central, and you’ll do whatever you can to make that vision clearer, even deny yourself food and distractions.

This is eternal life, to know You (John 17:3);

Pure and undefiled religion in the sight of God is to visit orphans and widows in their affliction, and to keep oneself unstained by the world (James 1:27).

1 Peter 1:13-25

13 Therefore, prepare your minds for action, keep sober in spirit, fix your hope completely on the grace to be brought to you at the revelation of Jesus Christ. 14 As obedient children, do not be conformed to the former lusts which were yours in your ignorance, 15 but like the Holy One who called you, be holy yourselves also in all your behavior; 16 because it is written, “You shall be holy, for I am holy.”

17 If you address as Father the One who impartially judges according to each one’s work, conduct yourselves in fear during the time of your stay on earth; 18 knowing that you were not redeemed with perishable things like silver or gold from your futile way of life inherited from your forefathers, 19 but with precious blood, as of a lamb unblemished and spotless, the blood of Christ. 20 For He was foreknown before the foundation of the world, but has appeared in these last times for the sake of you 21 who through Him are believers in God, who raised Him from the dead and gave Him glory, so that your faith and hope are in God.

22 Since you have in obedience to the truth purified your souls for a sincere love of the brethren, fervently love one another from the heart, 23 for you have been born again not of seed which is perishable but imperishable, that is, through the living and enduring word of God. 24 For,

“All flesh is like grass,

And all its glory like the flower of grass.

The grass withers,

And the flower falls off,

25 

But the word of the Lord endures forever.”

And this is the word which was preached to you.