"Those who are unhappy have no need for anything in this world but people capable of giving them their attention." —Simone Weil
Someone pitched a story today about having an autoimmune disorder—not what I have but similar—and how the methotrexate makes her sick and the neurontin makes her stupid and she can’t see and the steroids make her fat and everyone was like blah blah poor thing and I felt like I was having one of those near death experiences where you float above and listen to everyone talk and are like wow this is all bullshit. Then I had class but—I should have thought about this—it’s on the third floor, and I was already having a bad pain day, and then there was nowhere to sit and I was in so much pain I thought i was going to throw up or cry so I just walked out which is incredibly rude.
hahaha this is the best passive-aggressive index for a book ever
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
This is my life.
A wonderful, vivid family portrait of the King family.
Stephen King literally pretty much saved my life. I had been sick for over a year, unable to work (plus the crash killed freelancing for the most part right then) about to lose my apartment, on all kinds of assistance, and after I got a small grant from the Writer’s Guild Emergency Fund, they suggested I apply to his foundation, which I did —it’s specifically forartists and writers with catastrophic health setbacks, I think he set it up after his accident. I was packing to go who knows where, possibly to live with Colleen’s parents (this was seriously discussed as an option which is semi hilarious now, although now that they live on the Cape I totally would!), and they called to say I had gotten the maximum amount. What was incredibly kind was their support of me as a writer, they had clearly read everything I sent, and they kept saying they wanted to get me back on my feet so I could keep contributing and I just like died crying. Of course now I don’t write for a living! But I will again at some point, and I try to remember Kara’s encouraging (slightly hyperbolic) note:
the most important thing you are doing (well, to me) is showing people that there is this way. its super-feminist. it gets other people through the day. its important to your tumblr followers and random people you know and marie calloway! etc.
Anyway. I will always support Mr. King!* And trust, I realize that, as bad as it was, and as bad as other times have been I was waaaay ahead of so many people in terms of ability to navigate SNAP benefits and all those kinds of bureaucracies, and am so lucky to have a background that looks good on paper to grant-type people.
*Even though Salem’s Lot scared me so much when I was young I didn’t sleep the entire time I was reading it. I had snuck it out of the books in the main part of the house, and just the cover was terrifying.
I would hide it under my bed and just lie there in fright. But like I said, I’m cool with him now.
You may all continue to say nice things to me. Anna and Kara are on email duty.
Adalimumab looks like a mall food court.
abatacept, adalimumab, azathioprine, etanercept, golimumab, infliximab, leflunomide, methotrexate, rituximab, sulfasalazine.
At least the drugs sound like a spell.