I have this thing. You may know about it already or you may not. It’s a thing I talk about in very controlled settings, or more accurately, settings that I can control. I’m still working on my vernacular surrounding this thing, so bear with me.
For the sake of clarity, I have a disease. I don’t like to say it’s mine, even if it is, as I loathe the diction behind that. It’s taking ownership of something I never asked for: my disease. I could apologize now for what’s to come, and for its nonsensical nature. Although, perhaps I intentionally leave you with the inconclusive so that you can attempt to grasp the inconclusive nature of my condition.
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It wasn’t mine for a really long time. At first, it wasn’t anything, as if it had never even been thought into existence. Eventually, it was my sister’s. A year or two after it was my sister’s, it was suddenly mine too.
It’s been four, maybe five years since my initial diagnosis. I could go into detail about my recently ended drug trial, how my sister wasn’t a part of it, and the consequent guilt that rots inside me as I am the lucky one, even if my luck was short-lived. I won’t though. It represents a potent stagnancy that doesn’t seem necessary to resolve at this moment.
I want to stop here because I don’t know how you’re going to read this – I can’t control the narrative of this thing. I can’t urge you with the power behind my voice that I’m okay and this disease was secretly a blessing in disguise. I can’t read your reaction – whether it be apathy (there are worse diseases to have) or pity (worse than apathy if you ask me). And I can’t adjust accordingly. It forces a level of vulnerability that has been dormant in me for quite some time
I know I am being melodramatic and should take some time to explain that I’m okay right now. It’s called Stargardt’s disease. It means blindness. Not right away blindness, but eventual blindness, probably before thirty blindness, maybe by twenty-five blindness. The type of blindness that attempts to sneak up on you and demands relentless subconscious self-examination. I may stare at you with scrutiny as you approach me – know that I am not judging you. I am simply trying to assess if somehow, your face has miraculously changed overtime, become more vague. Or, if instead, my eyes are betraying me and you are the same and I am becoming different. I forget what my vision was like at its clearest and my new normal is constant doubt. I can’t tell if it’s more difficult for me to recognize you from thirty, twenty, ten feet away, or if I always had to squint to make you out.
That’s the first lie of many because I know it is becoming more difficult. You’re the only one I’ve confessed that to. I haven’t even told my doctors yet. I’m aware that seems stupid and reckless but in my defense, they do not communicate often. Regardless, even if they did, I’m not sure I would immediately admit the changes in my vision I have sensed thus far. It feels like I’m failing and keeping it to myself offers the delusion of limited control for the time being.
I present my disease as pretty. I make it seem put together in hopes that it reflects the same onto me. But it’s not pretty. It’s not anything. It is bitter, hopeless, hopeful, anxious, guilty, cheerful, imaginary, realistic. It becomes so convoluted, each emotion and response contradicting the other, that I can’t tell if I feel everything or nothing at all. Sometimes one emotion will eclipse the others (usually anger or oddly enough gratitude), though this is always fleeting. More often than not, I am left with the incessant and paradoxical emptiness of overcrowding. My mother calls it denial, but I think my interpretation is more poetic.
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If I have ever talked to you about Stargardt’s, I have lied to you in some capacity. I’m sorry, but it’s true. Maybe that’s a lie too, at this point I’m not sure. I can’t explain how I’ve lied to you, but I just know deep down that I won’t ever feel comfortable sharing the weight of this with anyone. Not even you.
I’m lying again.
Everything I have written is the truth but it’s not true. There’s no way to articulate how I feel and by even trying, I am being dishonest. It’s not that I don’t trust you. I want to trust you. I want to trust anyone. I want someone to help me carry this load more than anything because I’m tired. I can’t ask you to do that, as I’m famously bad at asking for help, especially when it comes to this. I won’t burden you with the responsibility of searching for answers where there are none, a responsibility that even I have yet to confront. There is a chance they find a cure in the next however many years, though that likelihood is, excuse my irony, unforeseeable. I don’t want to prepare myself, or you, for the worst but simultaneously, I don’t want to get our hopes up.
And even if you tried to help, I would just lie to you more. Accept your aid to make you think that I am alright, I am pretty. I am put together.
That said, the times I do break down, your comfort is not futile. But after your kind words of encouragement, or after you wipe away my tears, I will go back to being tired for me, and better for you. Tired of lying, tired of thinking, tired of my fear but better for you. That sounds resentful. It’s not. Your solace is always a respite.
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I’m holding back. I’m being honest on the easiest front, just the surface and as a result, I am lying about everything else.
I want to trust you, but above all, I want you to trust me.
So please, despite all my lies, and my awareness of them, don’t pull away. Please burden me. Give me the heaviness of your problems, your pains, that are far more tangible than mine. Give me something to solve, or at least try to solve, as I am tired of pondering my perpetually unsolvable.
This entry was originally four pages long. I cut it all out. Forgive me.