body betrayal

living with chronic illness and disability is living with a body that is constantly betraying you.

i only speak from my own experience, which is that of someone who went from relatively healthy with a few weird but livable issues, to disabled, in constant pain, always fighting the truth of my own flesh.

because of it i’m stranded in between believing fully in the social model of disability and knowing that no matter how much we improve society, i’m still going to hate being this way. it will always suck for me.

there are people for whom the social model of disability fits completely, and that’s fine. but for those of us for whom it’s only a factor — well, it gets frustrating talking about it. because it seems like you’re saying nothing matters, we shouldn’t fix anything, things will always suck. or that you’re saying disability means being inherently broken or having something wrong with you.

when the reality is, you’re only speaking for yourself. and while no, being disabled doesn’t mean there’s anything morally wrong with me (something i still struggle to believe because of that great protestant work ethic hammering away at my psyche), the fact remains: i am broken.

Continue reading body betrayal

Praying for Wellness for Wolffy

You know what’s terrifying?

Hearing that your mom “might have cancer again” 6 months out from your wedding.

Putting it that way seems selfish, I guess, but I’m not trying to say that I care more about my wedding than I do my mom. I’m saying that having my wedding being so close puts things in starker perspective than the first time I heard my mom had cancer.

A young woman with short ash-blonde hair holds an infant with dark hair. The young woman's face is pointed away from the camera; she sits cross-legged and is dressed in a white dress covered in colorful embroidery.
Me and Mom.

The first time I heard my mom had cancer, my radar was clear of any major life events that I wanted her to be part of — so the bone-deep terror that struck me, paralyzed me, didn’t get a chance to really extend to “What if she won’t be at my wedding/see her grandkids?” beyond vague thoughts of such far-off, seemingly fantastical events. The only event that I thought she could possibly miss would be my graduation from University (though, honestly, if she’d died 5 years ago I doubt I would have graduated last year, or at all).

I remained worried, terrified, until she recovered from surgery. All her assurances of “They caught it early; it’s just a few polyps at this point. They’ll just snip them out and I’ll be fine,” did nothing to calm my fears. All I could hear was “Mom has cancer. I’m going to be alone.”

I have abandonment issues. They’re deep-seated; I’m aware of them; I don’t have the money to get therapy to try to work through them right now. I have coping skills to get through the common triggers.

There are no coping skills for hearing “Mom is really sick and we’re pretty sure it’s cancer again.”

And the thing is, it’s even scarier this time. *This* time, we’re not sure it’s cancer, not right now. *This* time, we are waiting for a firm diagnosis. *This* time, mom is _visibly sick_ in a way she wasn’t 5 years ago. 5 years ago you never would have guessed cancer was setting up shop in her colon. Now? I look at her and feel icy claws close around my throat because she’s definitely ill and _we don’t know why_.

Two women smile at the camera. One is older, with short ash-blonde hair and a toothy smile. The other is younger, with a closed mouth smile and red hair. She rests her chin on her mother's shoulder, and it's clear she's holding the camera for both of them.
A more recent picture.

All we know right now is what’s working and what’s not. Mom’s taking a bunch of her supplements to deal with the weakness, which is caused by iron anemia (supposedly probably related to cancer “somewhere in the gut”), and the pain. She’s sleeping a hell of a lot more than she used to, and down in the library, on the guest bed that has a remote to lift her partially upright in the morning. She’s unable to work. She’s lost so much weight she doesn’t really look like herself anymore — not like the woman I’ve known my whole life, who raised me.

I look at her and my heart skips beats, my breathing becomes short, and the terror descends. I have been paralyzed with this terror for almost two months now, feeling helpless and out of control.

The truth is, we have no idea what the next few months hold. I’m trying desperately to keep it all together, to keep our lives going as normal as possible, but it’s the most difficult thing I can think of right now. All my spare energy is twisted up with praying that she’s okay; that it’s not as serious as they think; that in a few months she’ll be back to her old self. But I don’t let myself cling to those ideas, because that sort of hope can be deadly.

Mom’s sick, so my life is on hold. She doesn’t want it to be, of course; she doesn’t want things disrupted for me. But the very fact of her illness means things are emotionally disrupted for me — and these things are fucking dominoes. Everything else comes tumbling down.

My mom is sick and all I can think about is my wedding, wondering if she’ll be there to down the aisle with me, to give a toast at the reception, to have fun with family and friends, to witness me making one of the best decisions of my life.

All I can think about is my wedding, and all I can feel is fear.


We’ve set up a fundraiser to help support Mom during this time. If you’re able to give anything to it, it’s greatly appreciated. If you can’t give monetarily, we totally understand, and just ask that you pass it on. Alternatively you can give my mom’s blog a read as she chronicles what’s going on in her life.

Day 3

Content warning: emetophobia, depression, thoughts of self-harm/suicide

A week ago I had the flu. I call it the “Angry Badger Flu” because it felt like two angry badgers were fighting in my stomach and ripping up my insides and punching my gag reflex like it was a button that would give them kibble. Luckily, that portion only lasted one night, but the terrible nausea continued for a week.

Consequently I went without meds for a week. Taking pills of any sort often triggers my gag reflex and I always have to be super careful when swallowing pills to make sure they stay down. So when I’m suffering from things like the flu, I often have to stop taking any meds I’m on completely, at least for a few days. Otherwise it’s The Exorcist all over again.

Today is day 3 of being back on my anti-depressants. There’s kind of a night and day difference. It takes about 3 days for the anti-depressants to kick in, and today I am much different than I was this weekend.

This weekend I picked fights with Mr. Katje. I was surly and weepy and angry, so angry I wanted to hurt someone, preferably me. I thought a lot about killing myself, or just driving off a bridge. I had a lot of “What the fuck is the point of anything?” thoughts.

Today, I’m still stressed by the various stressors that didn’t help with my shitty mood last week, but I’m not thinking about suicide anymore. I’m not picking fights with Mr. Katje. I’m not surly, I’m not weepy. I’m even doing housework. (Is it possible to drown in laundry? I think it is. If you don’t hear from me for a few weeks, assume that’s what happened. Or that I forgot to update my blog in forever, as usual.)

I’m posting about this because I wanted to illustrate a very important fact: I am a better person when I’m on my meds. They are not a crutch, or a problem. I believe in better living through chemistry and that means finding the chemistry that works for me. My anti-depressants do a hell of a lot more for me than Vitamin D (seriously, shut up) or St. John’s Wort (though it does have a small effect, so I’ll give it two points for trying) or medical-or-otherwise marijuana (just makes me stupid and really hungry) or any of the amazing new miracle cures people are pushing these days.

Three days. That’s all it takes for me to go from “being suffocated by my own illness” to “functioning as normally as I possibly can.”

And yes, while I did survive years and years and years of having this illness without any sort of medication, so therefore it is possible for me to live without it…the key word there is survive. I did not thrive. I scratched my way through the dirt and broke a lot of nails to get here, to live enough days to get to this one.

I’m tired of breaking nails. I want a shovel. I want to see the light again in more than brief snatches. I want to thrive.

My meds are that shovel. Let me dig my way out.

Am Down and Out with Cold from Hell. Please send assistance.

I am suffering from the worst cold I’ve had in years. I don’t know where I got it, but I know where it came from: straight from the very bowels of Hell.

So my posting schedule and quality may be a little sketchy right now. I am barely able to function at the moment. Just taking meds and sleeping and trying to make it through one day at a time. If you have a TARDIS or something please send a magical cure from the future.

Wherever you are and if you celebrate it, I hope you have a Merry Christmas. If you have to go to a crappy family situation for the holidays, remember their opinion or treatment of you does not invalidate your worth as a human being.

You’re still awesome. Keep on remembering that.

Christmas lights at last year's xmas party. Photo (c) Katje van Loon.
Christmas lights at last year’s xmas party. Photo (c) Katje van Loon.