I have been disappearing for a long time.
Not all at once. That would have been easier to name. It happened the way summer comes in the Deep South: gradual in February, then suddenly all at once by official Spring. A word I couldn’t reach. A sentence I lost before it was finished. A conversation I’d drift out of mid-stream, like a boat with a cut rope, floating somewhere no one else could follow. Random long rants in texts or on social media, none of which made real good sense.
Two years ago, I was triple diagnosed. Lupus. Rheumatoid arthritis. Systemic sclerosis. Three diseases stacked like stones on a chest, and I’ve carried them while watching the image. I hurt all over, all time for so long, I stopped remembering what it felt like not to. Also holding on to keeping on keeping on. Because, you have to. People need you, people depend on you. So. You adapt. You grieve quietly. You keep going.
But this past year was different.
The forgetting got worse. I’d open my mouth to say an ordinary word, a word I’d used ten thousand times, and find nothing. Just white space where language used to live. My personality was changing in ways I could feel but not stop. I was there, and then I wasn’t. Present, and then somewhere dim and far away, even in rooms full of people I love. My eldest daughters began to worry about my ability to even hold a grandbaby.
My hands quit on me. I couldn’t grip a pencil. I, who have written my whole life, who have built something real and lasting out of words….I could not write my own name. Two weeks ago, I tried. I could not do it.
I hadn’t applied makeup in months. That sounds like vanity. It wasn’t. It was a signal. When a woman who has always cared for her appearance no longer has the motor control to brush lashes with mascara, something underneath has changed. I knew it. My husband knew it. We didn’t say it out loud.
I’ve seen a lot of doctors over the years. Good ones. Ones who genuinely tried. I am not writing this to indict the medical profession wholesale because that would be unfair, and I don’t deal in unfair. But I will say this simply: our medical system was not built to find what I was looking for. It was built to treat what it already knows how to treat, and to bill for the rest.
I had a gut feeling for at least two years that something else was going on. Something underneath the diagnoses, or hiding inside them. When I have a gut feeling, I have never once been wrong. I felt what was wrong was something no doctor had entertained in my questions and concerns. More MRIs and CT Scans than two hands can number. And nothing. I brought the question up again, because that is what my entire soul kept silently screaming. Parasites. I know how that sounds. I know the eye-roll it invites. I sat with that instinct for a long time before I trusted it, long enough to watch myself diminish, long enough to exhaust every other option that was offered to me.
When your doctors have done what they can do and you are still disappearing, you start listening to yourself differently.
I ordered human-dosed Ivermectin.
I want to be careful here, because I say this with absolute care for anyone reading this: I am not telling you to do what I did. I am not a doctor. I am not making a medical claim. I am not prescribing anything to anyone. What I am doing is telling you the truth about my own life, in my own words, because I was given a voice and I intend to use it honestly. Because I have been slowly and silently in a very loud manner, dying. Two weeks ago, I was ready to give up completely and recuse myself to a ward so my family didn’t have to bear the weight of fading away me. That is where I was as of two weeks ago. It was either try Ivermectin or die. That is how dire this has become for me.
Nine days ago, I took a compounded dose of Ivermectin.
Within eighteen hours of one dose, I was back.
Not better. Back.
There is a difference. Better implies progress along a continuum. What happened to me felt like a door opening, or rather, like walking back through a door I hadn’t realized had closed behind me.
My mind was clear. The words were there. I could follow a conversation from beginning to end and arrive somewhere with it. I could think. I could move my head from side to side, up and down. I could kiss my husband without crying out in agony for angling my neck a few degrees.
My husband looked at me across the church parking lot last Sunday, his eyes filled with tears. “You’re glowing,” he said. He said it the way a man says something when he’s been afraid to hope.
He’s lost me for so very long. I can’t even begin to imagine how hard this has been on him.
I hadn’t realized how far I’d gone until I came back. That’s the thing about this kind of slow disappearance; you don’t see it clearly until you’re standing on the other side of it, looking back at the shape of where you were.
I don’t know exactly what happened in my body. I have theories. I have that gut instinct, now confirmed in the way that felt confirmation does, not loud, just settled. I believe I had a parasitic load that was interacting with my existing conditions in ways no one was looking for, because no one was looking for it.
Parasitic infection is underdiagnosed in this country. That’s not conspiracy; it’s a gap in the system, partly because testing is inconsistent, partly because it doesn’t fit neatly into the autoimmune framework most rheumatologists work within, and partly because there is very little financial incentive to investigate it.
Follow the money. It won’t always lead you to the truth, but it will usually show you where the truth wasn’t followed.
I’m not asking you to follow my path. Every body is different. Every situation has variables I don’t know and can’t account for. What worked for me may mean nothing for you, and I would never want someone to make a dangerous decision based on my story alone.
What I am asking is that you trust yourself.
Not blindly. Not recklessly. Not in opposition to every doctor you’ve ever had. But as a co-investigator of your own life and health — someone with data that no chart captures, with a history that lives in your body, with instincts that have been trained by years of paying attention.
You know yourself. Doctors know medicine. Those are not the same thing, and the best outcomes happen when both kinds of knowing are in the room.
Two weeks ago I couldn’t write my name.
Today I wrote this.
I don’t take that lightly. I don’t share it casually. I treasure it. I share it because I spent two years half-absent from my own life, and if anything in this story gives someone else the courage to keep asking questions — to keep listening to the thing in themselves that says this isn’t everything, there’s something else — then telling it was worth every word.
I’m still here. I came back.
And if you’re in the middle of your own disappearing, I want you to know: so might you.
This essay reflects personal experience only and does not constitute medical advice. Please consult a qualified healthcare provider before making any decisions about your health or treatment.
Glad you are back