12:29am March 8, 2014

I hope I can keep these vows.

Never again will I allow anyone’s thoughts into my head, who tells me that:

My symptoms aren’t real.
I’m imagining things.
My symptoms are psychosomatic.
My symptoms are fake.
My symptoms are caused by laziness.

Never again will I participate in my own oppression in this way.

Every time I am tempted to take such thoughts into my mind, and think them at myself, thereby doing that person’s job for them?

I will remember the time I got up after six years of bed rest and started doing jumping jacks. And I was able to do them. And I did not get fatigued. And I did not get pain. And I did not collapse. And I did not get palpitations, shortness of breath, or severe muscle weakness. Because I was finally under treatment.

I was finally under treatment for a real disease, that had real lab tests that are recognized everywhere as legit, that had real medications that treated it in real ways causing real results against my real symptoms.

Oh I knew, all along, intellectually, that it was real. I knew, all along, that I was in severe danger. But all those people over the years who have treated me like crap for being disabled and chronically ill, all those people who have told me all the things I described, they got into my head, and I let them into my head because I hated myself so much that I thought maybe they were right.

I can’t hate myself like that anymore.

I can’t do this anymore.

I can’t live anymore with this constant repetition in my head of mind-tapes that run in endless loops telling me everything the worst parts of the world want me to believe about myself.

Because living this way would kill me as surely as this disease could have.

I can’t do this anymore.

I shouldn’t need lab tests to tell me that my body is doing something real. I may not know what my body is doing, but knowing that it is doing something, is enough. And I need to fight back when people treat me like a hypochondriac or a faker. I have a track record better than most people with chronic illness when it comes to having a symptom and then having the symptom validated by laboratory tests or surgical procedures or other ways of measuring what is going on. I don’t need any more proof that the symptoms are real.

And from now on I’m going to fight back.

I’m not going to roll over.

I’m not going to, anymore, “look guilty” because I feel guilty because I half believe that these things aren’t real because I’ve been as indoctrinated by this society as anybody.

I will remember what it felt like to learn that exercise is supposed to make you feel invigorated, not sapped of all your vitality. And I will remember that this is as real as it gets. And I will not let this happen again.

And failing that, I’ll do my best, and I’ll screw up, and I’ll get back up again and keep fighting.

Because I’m done laying down and taking some of the worst bullshit society has to offer to people with chronic illnesses.

I’m done with “If you really have gastroparesis, why are you still fat?”

I’m done with “If you couldn’t walk yesterday, why can you walk today?”

I’m done with “You talked twice in ten years so you could do it whenever you wanted.”

I’m done with the ignorance, whether the ignorance comes from “friends” or medical professionals or outright enemies.

I will educate, where it’s needed, but I won’t lie down and take the level of disrespect I have been lying down and taking all these years because I thought I deserved it because I deep down thought they were right.

They were wrong.

Because exercise is invigorating. And it has never been invigorating until I had cortisol. And I didn’t have cortisol before, not enough of it. And that changes everything.

And you can’t take that away from me. You can’t take away my physical direct experience of the world. You can’t destroy that. You can distance me from it, you can put a smokescreen in my face, you can confuse me, you can try to make me forget. But you can’t take away that experience. And somewhere deep down it will always have changed me on a level more profound than your ignorance can imagine.

I am finding my fire again. And my fire is not anger, though it can cause anger at times. It is my passion for goodness. And the best you can do, at your strongest, is deceive me. You can’t take my fire away.

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