People don’t see that the person who is wry, sardonic or frustrated aren’t addicted to looking at the dark side but people who hope over and over again even when they don’t want to and that’s where communication breaks down. This practice of blowing sunshine up peoples ass as a form of lecturing, as if the person hasn’t already given themselves all these pep talks or gone through these motions, is so condescending and pretentious and the new age of “I’m ok. You? Not so much.” behavior. It’s whistling in the dark, a way of pretending we never have felt that way, never can relate, that nothing the other is feeling has any grain of truth to it.
When someone is being force-fed a shit sandwich, telling them to focus on the perfectly toasted bread and stop crying may not be helpful.
— Yes, I’m her. (@excitablegirl) January 4, 2017
Often dry jokes are my way of blowing off steam. We all feel frustrated and laughter can lighten that load. Poking fun at myself is one of those ways to cheer myself up, to show myself my knee jerk reaction in its skeleton, to step away and see it for its silliness, the ridiculousness or childishness of its core. It doesn’t mean I don’t have hope, it doesn’t mean getting up isn’t an option or that seeing the sunshine isn’t possible.
Those of us with serious health problems, especially rare or chronic ones, get up every day and do it all over again. Sometimes we aren’t even getting up, we’re still up from the day before while others have slept. We still hope, we grab hope by the balls as it tries to run away and say “Ah ah ah, I don’t think so li’l fella.”
You know what’s great about having epilepsy?
Jesus, no. Nothings great about it, stop guessing.
— Yes, I’m her. (@excitablegirl) January 5, 2017
Having Tuberous Sclerosis with all it’s glorious manifestations (brain nodules and tubers -one that’s four inches long- with kidney, lung, spleen and other manifestations), Chronic Idiopathic Urticaria and all it contains with its treatment (and possibly just spontaneously) leading to Cushings Disease, causing huge weight issues and other health problems which cause more health issues (metabolic syndrome, high blood pressure, high cholesterol, degenerative bone disease anteriorly in my spine, thinning skin and so on) it took until I was forty-two and became assertive enough for someone to even listen to me to begin to find it. Even then, when the first spots were found on my kidneys, I was told “This isn’t cancer so we aren’t going to pursue this. Do NOT go home and Google this.” by my then doctor. Needless to say, I did a great big mental “Fuck you.” and began researching and not just through Google. So you can say I had hope for a long, long time and didn’t give up for a long, long time. Lectures and blowing bullshit my way with spoken inspirational meme-like statements will get you level-eyes, a straight face, and flat affect from me. Don’t tell me about not giving up as if I have done so. Getting discouraged, annoyed or even pissed is ok. Giving up would mean leaving this world and I’m still here, aren’t I?
If my tumors were people I’d set them on fire but only for a minute or two, put them out, then throw alcohol on them to teach them a lesson.
— Yes, I’m her. (@excitablegirl) November 18, 2016
Having two surgeries, first, the gastric banding which failed (it’s been found to work only in about 5% of cases) then having a revision to a verticle sleeve gastrectomy changed much for me. I live off, at most, a thousand calories a day with the average being eight hundred. That’s not normal but it’s what must be for right now. It’s made it possible, with my issues, to lose almost ninety pounds (I had lost almost twenty between pre surgery and having the band) I am off one of the two blood pressure medicines, though with my kidneys, I may never get off the one. The discovery of epilepsy has answered many questions clearing up many of the mental health questions that have lingered for so long and showing that, yes, I have worked hard and done the footwork so the lectures of hope and not being lazy can stop now. The discovery of the many allergies and idiopathic urticaria has cleared up the comments about me worrying myself into life-threatening hives (one of the stupidest homemade diagnoses). The discussion of phantom pains, hypochondria, neurosis, faking symptoms, exaggerating symptoms or pain have all fallen away but they would still be there if I hadn’t kept trying so giving up isn’t really part of my nature. Everything has boiled down to the root causes of three things because of continuing to walk even when others, the same people popping out the inspirational lines about not being negative and stop looking for the dark clouds et al, were saying to stop making excuses and accept it was all in my head.
When someone invaluable looks up from the dust and says “I’m not ready to give up.” while holding your hand, you crack.
— Yes, I’m her. (@excitablegirl) August 22, 2016
I find my taste buds becoming accustomed to sugar again and a type of dumping syndrome (although that is controversial in the VSG literature, I still get the symptoms without even thinking about it if I over do it) when I eat sweets. I want to eat more than three ounces of meat but even that will make me have to lay down. I get frustrated if I have seizures and become sad when it reminds me that I’m not driving like other adults. Napping isn’t a luxury, it’s a necessity. You just get up and keep going because the alternative isn’t a possibility, it’s ludicrous. You get tired but that doesn’t mean you don’t see the good most of the time. Jesus, Mary and Joseph, cut us some slack.
Talking, screaming textually, dark humor, blowing off steam; they’re all ways of getting through. If you’re concerned, ask us. Treating me or anyone like we’re incapable of thought or reasoning will usually simply put a wall up. Usually, I will get very dry or so subtly sarcastic we’ll be skipping down the garden path before you know what hit you. Try being an equal.
Even better yet, get to know us. It’s not contagious.