Forgetting when pain was scary

November 13, 2017

A friend mentioned that it’s frightening to wake up in pain. I paused, not sure what she meant for a moment. Then I remembered back to when waking up in pain was scary. That feels so long ago.

Don’t get me wrong, sometimes it’s still scary. It’s just that that feeling has become rare. After all, when I’m in pain all day every day, why would it surprise me to be in pain at night?

My friend was referring to a different kind of pain. She is pregnant, and sometimes wakes up with horrendous leg cramps. Before the pregnancy, she only had pain the way most people do: if she injured herself. So this is unusual. And we humans often respond to the unusual with fear. It makes sense from a survival perspective. And pain is a bad thing – it’s telling us that something is wrong. So again, it’s natural to have a negative reaction to it.

The thing is, when you’re in pain all the time, your survival instinct learns that this isn’t a threat. You can’t be always worried that something is wrong because it will wear you out.

Occasionally I have a burst of scary pain in the middle of the night. Usually, it’s a new or uncommon pain, and that’s what makes it scary. More often, it’s my same old pains. At their usual levels, I sleep through the pain; I learned to do that when I was 17 years old and thoroughly exhausted from the sleepless nights.

When the pain gets worse, I often wake up, think “that sucks,” move to a less painful position (if possible,) and go right back to sleep. I’m aware of it, but I don’t think much of it. It’s not scary at all. Even when the pain is bad enough that I can’t get back to sleep for a while, I don’t feel fear. Annoyance, frustration, and sometimes anger for sure, but not fear.

It has been so long since pain itself has been scary, that I forget what it’s like. Now when pain scares me, it’s not the pain that I find frightening, but the unknown cause and the fear that it could last the rest of my life, as so many new pains have. Will this ever go away? Will it get worse? Will it stop me from doing things I love? Those are the fears. But when I know the cause and that it will end, there’s no fear. My body’s instinct has shut down when it comes to pain, and I wasn’t even aware of it happening.

It’s easy to see the many ways that non-chronically ill people don’t understand what we go through, but it’s also true that we don’t understand what they go through. I don’t want to diminish my friend’s experience simply because I am in pain more often and have learned to deal with it, because my pain comes with a bunch of other (arguably worse) symptoms, and because mine pain will never go away. Yes, I would rather be in her position, but that doesn’t make it easy for her. Her natural instincts are still intact, and possibly heightened because she is pregnant. She is dealing with changing hormones and a changing body. That doesn’t sound easy to me.

My point is simply that it’s easy to shrug off what others go through as being no big deal, but I still try hard to have sympathy and empathy for them, as much as possible. Just like I want others to have for me.

This conversation happened weeks ago, but it has stuck with me: the confusion I felt (people wake up feeling scared of pain?), the realization of how much my perspective has changed, my instinct to shrug off her situation, and the awareness that that would be a crappy thing to do. Writing this is my way of reminding myself to keep that awareness. Because everyone’s pain is a problem for them, and that’s something we can all relate to.

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Defining “affordable”

November 1, 2017

Only a few people know that I live in “affordable housing.” It’s not something that I want to publicize because of the stigma involved. One friend recently asked me what my rent is, and was shocked at the answer.

That’s because it’s not all that “affordable.”

And it’s about to get worse.

There are different types of “affordable housing.” The kind I live in works like this:

  • I live in an apartment complex.
  • At least 10% of the units need to be part of the “affordable housing” program so that the developers/owners get tax breaks.
  • The rents are set by the state, based on my region. It’s based on a percentage of local earnings or housing rates or something. I’m not sure, and it doesn’t really matter, because it works out the same way.
  • Every year, the state determines how much rents will go up in my region.

As my lease is coming up for renewal, I filled out the 25-page questionnaire that reminded me of the colonoscopy I once had. They need A LOT of information. I have to account for every deposit into my bank account so they know my income is within the affordable housing limits. Cash a check from my parents? That counts as income. Get a job? That counts as income. Sell shit from my apartment? That counts as income. It’s invasive and unpleasant, but I do it so I can live here.

When they gave me the form, I was also told when next year’s rent will be. It’s a lot. Cheaper than what my neighbors in this complex pay, but a lot. Over $1400, not including utilities. Now I live in the Boston area, so rents here are high. Still, this is tough for someone who isn’t able to work full time. (Actually, my income is below their minimum requirements. The only let me move in because I have enough money in savings so assure I can cover my rent. Sadly, a lot of people earn too little to qualify for “affordable” housing!)

The increase bugs the hell out of me for one simple reason: it is a 5% increase! Yes, my rent is low compared to my neighbors, but 5%!

Rents in the area have been skyrocketing for years. My social security disability payments will not go up at all this year. I get the maximum SNAP (formerly food stamps) benefits, and this year they went down by $2 per month because the maximum amount was lowered. None of my other benefits are going up. And let’s say I was working. I might be lucky enough to get a 2-3% raise. Maybe, and I mean maybe, a 4% raise. Maybe. But no one gets a 5% raise.

The cost of food is going up. Housing costs are going up. And benefits are going down. Politicians are saying that these programs cost too much, and they’re right. But instead of finding a way to fund the programs or fix the system, they are reducing benefits to people who need them.

And I am one of the lucky ones. I have enough money in savings to cover my costs for a while. My part time work covers some of my expenses. My parents help out a bit. It all works out. Sure, I almost never get to spend money on fun things, but at least I’m getting by.

I was telling someone that the waiting list for Section 8 housing is now 8-10 years. I am told I should expect to wait another 3-4 years to get into the program. Of course, I was told that when I signed up 4 years ago. She asked what people are supposed to do in the meantime.

And that’s the catch. The “safety nets” only work for people who aren’t truly desperate for them. Yes, people who are homeless get moved up on the waiting list for Section 8 (which is one reason why I get pushed down the list.) But it’s not enough. Someone shouldn’t have to be homeless before they get help.

These things are decided by people with good jobs earning steady paychecks. They presumably can pay for housing and food from those paychecks. So maybe they simply don’t understand what “affordable” means? I’d rather think they don’t get it, than that they don’t care.

Because raising rents based on what the community is earning or paying might sound good in theory. But a 5% rent increase is a lot for someone who wasn’t making ends meet before, and isn’t getting any sort of increase in their own income.

And I’m one of the lucky ones. What does that say about our system?


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