Chronic Pain

This is one of those topics I don’t talk about much because it’s fairly personal.  But… it’s a very prevalent and important part of my life so I don’t want to entirely sweep it under the rug.

My reluctance to talk about my daily doses of pain stems partly from the fact that it makes other people uncomfortable.  I’m trying both to protect them from feeling the things it makes them feel and to protect myself from their reactions.

When I talk about my pain people usually try to give me suggestions, tips, ideas.  Based on their own experience.  I know that they’re trying to be helpful and that they think that what they’re telling me *is* helpful.  That’s not how it feels.

It feels invasive and dismissive and patronizing.  And I can’t respond to them based on that, because I know they don’t mean it to feel that way.

“Have you tried ‘x’ supplement?” Probably
“Have you tried applying heat?” Yes
“Cold?” Yes
“Eat healthier.” I eat in a very healthy way
“Eat less red meat.” I’ve tried that, it makes me feel worse
“Exercise more.” I exercise in ways that I can accomplish without making my life worse
“” …thanks.  I’ve probably tried it, or researched it and dismissed it.

It’s exhausting just thinking about it.

Part of the problem is that *because* it makes people uncomfortable they want to FIX IT.  NOW!  (believe me, I’d like nothing better)  They don’t want to hear that their suggestion isn’t valid *in this case*.  It worked for their acute case of pain and therefore it should work just as well for my chronic pain.  Those are entirely different beasts.  It would be something like treating chronic depression as though it were a fleeting sadness.

The main issue is that the suggestions are for ways to “get through it” and that is an invalid premise.  Getting through something implies experiencing it and then getting past it, being done with it.  Finishing.  That doesn’t apply to chronic pain.  There *IS* no “through” it.  It will remain, it will be back today, tomorrow, next week, next month, next year.  It will remain, one of the most steadfast facets of my life.  The BEST I can hope for is that it stagnates.

When I open up to someone and tell them that I’m feeling crappy and I’m having a bad day, what I really want from them is acknowledgement. “That really sucks.”  I don’t want you to fix it, I don’t want you to tell me something to try (unless I specifically ask you for your thoughts or advice, of course), and I *guarantee* that I don’t want you to try and make me feel better (because no matter how you mean it, it ends us making me feel like you’re dismissing how I’m feeling).  I’m sharing a valid feeling with you, I just want you to sit with me and let me feel it and tell me that it’s valid.  That’s it.

I know that I’ll survive, I know that you wish I could just feel better, I know that I have good days, I know that I will have good days in the future, I know….  I know.

I’m just having a bad day and I’m reaching out for another human being to share my feelings with.

Wow, I feel much better.  Just saying all of that helped.  And you didn’t even have to say anything in return!  🙂

Edit: I was done here, but the fine folks at SciShow posted something that made me think and I wanted to share it.

In my own experience, swearing when I’m in pain is an aggressive act.  Sometimes I’m angry at my body, feeling like it is betraying me, sometimes I’m angry at life, sometimes I’m angry at whatever just contributed to my pain (I’m looking at you, sidewalk!).  When I’m channeling that emotion and swearing, it does end up hurting less than the times where I try and clamp down on my desire to let loose with a few choice words.  In those settings where I feel like I can’t use yell out a couple of well-chosen profanities I am definitely feeling more pain.  Or when I’m feeling more defeated by the situation, more sad, and thus don’t swear, it somehow feels worse too.

I was an unhappy teenager, a lot of the time.  I didn’t fit in, I didn’t understand *why* I didn’t fit in.  I had no idea what I was doing wrong, or why it seemed to come so naturally for everyone else.

That probably explains why the majority of my poetry was dark and/or depressing.  …Actually, I’d go so far as to say 99.9% of it, through my early 20’s.  I, of course, wrote very angsty things but a few of them still resonate with me, even if they’re a bit heavy-handed.  I was looking at one and it hit me just how relevant it is to the current US presidency.  I wrote it when I was 17.  …I find that somewhat discombobulating.

 

The needs of the many

outweigh the needs of the few

yet the whims of the few

control the lives of the many.

Are we the people

so inconsequential and irrelevant

that we need not be considered?

Are our lives

and the lives and futures of our children

to be callously used and tossed away,

All for a whim?

They say they care about us

and about making us happy

but when it comes down to it

they follow their ambitions

and we must follow blindly

like thick-witted cattle,

waiting to be milked dry

or slaughtered to feed the rich.

 

The good of the many is being sacrificed

for the good of the few.

 

See what I mean about heavy-handed?  But seriously, how could this possibly describe one of the most powerful countries of our world?  This should describe a country known for their human rights violations and their horrific barbarism, or some dystopian story, not “the leaders of the free world”.  It should be a melodramatic rendition of things rather than practically a syllabus.

Things are dark out there, and they keep getting darker.  We need to keep looking for the light.  Looking for the helpers, like Mr. Rogers said.  Better yet, be one ourselves.  We will find others to stand beside us.  We must stand.  We must speak.  We must not allow the past to repeat itself this time.

Kiva.org

So over the past few weeks I’ve been working my way through the Vlogbrothers YouTube videos.  I’ve covered almost five years so far.  …I may have a tendency to obsess over new, shiny things…  O_O

*ahem*

At any rate, I found out about this really amazing organization called Kiva.  What it is is a place where you can search around and find all sorts of people and groups around the world who are looking for capital in order to start a business, improve a business, or in some way improve their lives.  You can loan them however much you want in order to help them.  They repay the loan(s) as they can.

I decided to give it a look.  I certainly don’t have much, but I have a great deal more than many in the world and it makes me feel good to help and feel like I’m giving back to the world.  I found this request and decided that I really liked it and wanted to support it.  I mean, what’s not to like about people trying to better their lives, support themselves in a meaningful fashion, reduce their impact on the environment, and invest in green energy??  These are all things I support and care about.  Win/win!

Once that loan is repaid I will find someone else to help.  Giving gifts is something I really enjoy, it brings me a great deal of pleasure.  I may not be able to see this person receiving the money, they have no idea who I am, but it still gives me a warm feeling that I am contributing to making the world better, in a tiny but personally significant way.

Project Common Voice

I found out about this thing where you can help with open-source voice recognition software.  Partly that’s awesome in and of itself, but they’re also really hoping to get people of all ages and genders with as many accents as possible so that it works better and can understand people more reliably.  They also encourage you to not find totally silent areas in which to work so that it can also differentiate the human voice from background noises and such (and we all know what a pain it can be to try and speak clearly, enunciate in a way that programs understand, and escape the ever-present background noise!).

It’s called Project Common Voice, and is being done by Mozilla.  There are two different ways in which you can participate.

The first way is by reading given sentences in order to give them more data to work with.  The second way is by validating *other* people’s submissions.  You see the text they are supposed to be narrating and you listen to them say it.  So long as they say all of the words correctly, you click to accept it as correct.  If they say it incorrectly, you click the button to say so.  I have found one person who says completely and totally wrong things, clearly on purpose, which irritates me, but for the most part it’s people honestly just trying to help.

I’ve heard many different accents, as well as people for whom English is clearly not their first language.  Being a native English speaker, it never really occurred to me how difficult it must be for someone who isn’t fluent with the language and still has a strong accent to try and use voice recognition software.  I’m really enjoying hearing the soft, uncertain voices speaking these phrases.  I’m enjoying the feeling that I’m helping people, but also that I’m not the only one who cares.

Also, just for entertainment value:

 

chalk art

The thing about unconscious assumptions is that you don’t realize that you’re making them.  That seems obvious, and yet it surprises me every single time I realize that I’ve done it again.

I try to question my assumptions so that I can continue to stretch and grow as a person, but that is complicated by the very nature of assumptions.  You don’t realize that you’re making them.  For me that means stumbling over them and landing in a messy pile, looking over my shoulder in confusion as I try and figure out what just happened and why.  That used to lead to an angry reaction from me, a kind of denial that I could have been wrong, I guess.  It took me a long time to start to be able to question my own ideas and examine how I came to have them and how valid they may or may not be.  It’s certainly not a comfortable thing, so much easier to just stick to what I “know” and obstinately defend that “truth”.

Except sometimes what I think I know is wrong.  And I hate being wrong.  I used to think I hated appearing wrong, but I’ve learned that what I really hate is *actually* being wrong.

I have had a lot of practice at being wrong.  My children are tremendous helps in this regard, pointing out my transgressions.  I’ve apologized far more times to them than I have to anyone else in my life.

Being wrong used to terrify me as a child.  I hated standing out because invariably that would involve being laughed at or teased or otherwise being reminded that I didn’t quite fit.  That’s been a very difficult thing to put to bed.  I still don’t like standing out, except on my terms.  “Here is this thing that I’m doing that I feel fairly confident about, go ahead and notice me.”

Things I’ve learned over the last four decades:

Thing 1: If you hate being wrong, and you have a big mouth that is keen on expressing your strongly held convictions, you should either ALWAYS BE RIGHT or learn to evaluate your thoughts and ideas before you actually open your mouth and reveal them to the world.

Thing 2: I have yet to master always being right.

….

….

Ladies and gentlemen, boys and girls! Turn your eyes to the center ring!  For my next death-defying trick, I’m going to learn how to assess my response BEFORE IT LEAVES MY MOUTH!!

….

….

What?  It could happen…

 

consent is mandatory

The older I get, the more conscious I am about how we raise our females within our society.  Female bodies are viewed as inherently public property, in a way.  People, male and female, seem to feel that they have a right to touch the bodies of females that they do not know.  How often do you see a man touch the hand of a woman he finds attractive?  Watch how they interact with cashiers and other service people, people who are paid to smile at them and be friendly.

Almost daily I have (mostly male presenting) customers who feel that it is perfectly acceptable to touch my hand or arm or shoulder.  And as I’ve gotten older I’ve fought my upbringing and subconsciously absorbed societal mores of not offending others, even at the expense of my own comfort.  I now have male customers who imperiously hold out their hand to me, an expectant smile on their faces because they know that our society has taught me that the expectation is that I accommodate them, who become upset or offended if I decline.

I have also discovered that I don’t know how to decline, which just adds to my sense of discomfort.  Not only do I have this perfect stranger who is offended that I don’t want to share the sense of touch with them but I’m feeling anxious because I don’t know how not to make them feel badly about it!  It’s intensely frustrating that I’m still fighting with that subconscious urge.

I want my son to understand the very simple concept of consent.  Our popular media portray the strong man kissing the woman without ever checking in to make sure that she’s ok with it.  Grabbing her into his arms without a thought.  Consent is such a simple and yet profound thing.  I have been completely thrown on the few occasions where I’ve been *asked* if it’s ok to proceed.  I’ve had to process the CONCEPT of being asked before I could even address the question at hand.  So much of my youth was spent going where the wind blew, without a strong sense that I had the right to make sure that *I* was ok with what was happening.

I use the experiences I have at work as diving boards for conversations with him.  I tell him about the various encounters I have as examples of how not to treat others.  I point out that it’s an unacceptable way to treat anyone, not just women.  I want him to grow up internalizing the outrageous idea that women are people too.  That everyone is equal, regardless of gender, sexuality, race, religion, quirkiness, funky clothing choices, startling piercings, etc.

Victim Blaming

We hear so much about this lately, which is a good thing, the more that people are aware of it and discussing it, the more chance we have of changing it.

I find that it’s the more obvious forms that we currently really notice and comment on.

“What was she wearing?”
“How much did she have to drink?”

But what about when it comes to the so-called Islamophobia (which isn’t a phobia at all, but I digress) or bullying or how black people are treated, or, or, or…

We police what religious groups who aren’t Christian wear, what they say, how they pray.  We comment on how black people wear their hair, what they wear, how they walk. We discuss ways in which bullied children can “deal with it”.

Bullied. Children.  Even there?  Even then we focus on what the victim can do in order to stop being a victim?  How they can help themselves to not feel so alone, so ashamed of being themselves?

Our society is so focused on FITTING IN that everything else falls by the wayside.

I was watching an old Vlogbrothers video and was struck by this thought.

 

I’d never really thought about how we victim-blame bullied people. How we always try to give children ideas on how to deal with it.  Because we apparently don’t expect anyone to deal with the bullies.  That’s kind of depressing and it leaves me feeling helpless.