Tuesday, December 30, 2014

How Much Does a Spoon Cost?

A friend asked a question in her own space about how people manage their spoons (if you're not familiar with 'spoon theory' when dealing with chronic illness or other conditions, please read this).  As I started to answer it, I realised two things: how much the answer has changed since I acknowledged the combination of chronic depression and anemia that saps my energy, and how much difference money makes.

Ten years ago, a skipped lunch on Monday would set off a declining spiral of energy and options, putting me in the position by midweek of trying to find a way to eat with an empty bank account because I just could not get the energy together to fix a lunch either the night before or in the morning.  I was working jobs with no paid leave where every time infraction was documented and enough of them would mean being fired, so something as simple as "I couldn't afford to get gas until my paycheck had cleared, so now it's 7:51 and I'm at the gas station eight minutes from work hoping the two gallons I can throw in here now will be sufficient, and also not mean I clock in late," was a serious source of anxiety, complete with "If I managed my life better I wouldn't be here right now.  I am such a fucking loser."

Today, if I eat out every single day in a week, I make a mental note to go to the HEB over the weekend, seriously, and at least get some canned soup or something, because I can't afford to do that permanently.  The difference between "I can't afford to eat out every day" and "I can't afford to eat today" is profound.  The lack of crisis, the lack of urgency, not having that feeling of despair when you fail at feeding yourself, completely alters how I approach my condition.  I allow myself much more leeway, much more weakness now, and sometimes just the moment when I can be gentle enough with myself to say "I can't walk four blocks from the free parking to the restaurant where we are meeting.  I will pay to park in the garage downstairs," is enough to renew part of a spoon I'd spent trying to manage my emotional wellbeing.

I'm not rich, not by any means.  But I am no longer living paycheck to paycheck, and have enough for any reasonable emergency expense (car repair, insurance deductible) in savings.  What this means is that often, in the *short term* I can prioritize self-care over saving money, and then at another point I can prioritize saving money over self-care, when I have an extra spoon or two, so that the pressures of balancing my life are spread over a greater area.  High energy day?  Obviously a grocery 'buy the stuff on sale' run, followed by prepping some freezer meals for the future.  Or clearing expired food out of the pantry and replacing my fast-and-easy crock pot staples.  No worrying about whether there's money in the bank for the groceries, so I can take advantage of the moment.

But the real difference is in *choice*.  Normal people, people who don't have to manage their energy and abilities carefully, have a constant choice of "Shall I do it myself or pay to have it done?"  They have only one immutable variable: can I afford it?  And, depending on where you are on the socioeconomic level, "can I afford it?" isn't a restriction that comes into play on every decision.  Whether or not you can do it yourself is a matter of free time and skill set, and you have some control over those.

A chronic condition that saps your energy or makes your daily activities painful adds a second limiting variable, one with fairly immutable boundaries, and it adds it to *every decision* from "Do I wear pants or a skirt today?" to "Do I pay $100 more for the ground-floor apartment with reserved parking spaces close by?".  The body will not do what the body will not do, and the more you limit one variable, the more you need of the other to balance a decent quality of life.  If you've got five bucks and unlimited spoons, you can make a pretty decent steak dinner and clean up after it.  If you've got 100 bucks and two spoons, you can have a nice steak dinner delivered to your house and throw away the plastic ware.  If you've got five bucks and two spoons, you can...eat bean and cheese fast food tacos or make a peanut butter sandwich, and either of those puts you short of resources on one side or another.

For too many years, I had to operate on a razor-thin margin of both spoons and money, so that a shortage of one cascaded to a shortage of both, derailing my entire life if I wasn't lucky.  The stress of that, plus my inability to afford the things I needed to be eating, exacerbated the depression significantly.  Now I'm in a place where I can build safety nets for the harder days, in the form of a freezer full of reasonably healthy ready to cook food, the ability to schedule buying gas and running errands when I have the energy for them instead of waiting to get paid, being able to pay people for things I'd otherwise have to do myself, like moving. 

How did I get to a place where I can afford to 'buy a spoon forward'?  

I could spin this tale of self-sufficiency, how I budgeted carefully and spent wisely, how I was willing to do without nice things while I maintained my single-minded focus on digging out of my hole.  And I did those things.  I also had a lucky few years where I was able to build up a little reserve of money and security because I didn't have to dip into my meagre savings to cover an unscheduled day off or unplanned expense.  But the most important thing was other people.

Friends made sure I ate when I was feeling low, buying the food for me if they had to.  Family helped me financially when the reality of figuring out how to manage all the things was too daunting.  People helped me figure out time management in a way that wasn't "Make a schedule and stick to it."  I was gifted my first crock pot (I have since bought a second one to replace it when it broke, because Energy Badger can put a roast in to feed Anemia Badger for several subsequent days) and a cookbook with 'fast and easy' recipes as well as 'prep ahead and freeze' ones.  Almost all the things I needed to turn my own efforts from 'treading water' to 'gaining ground' were gifts and kindnesses from others.

My employer provides me with the twin blessings of health insurance and sick days (without demanding a doctor's note or explanation!) and a couple of years ago I took the risk and told my boss, "Hey, in addition to the anemia I keep having infusions for, I've suffered for almost 30 years with chronic depression.  So I am struggling, but I wanted to let you know that I'm doing my best, I really am, right now."  It was a huge risk, in an at-will employment state, and I advise anyone considering it to be cautious, but it turns out I work for a pretty decent and compassionate human being, who never questions the fact that I don't look sick every single time I come back from a sick day.

My partner has been a huge help.  Just having someone who doesn't consider it a terrible imposition to pick up the slack on housework you can't do is a tremendous difference, the difference between 'to clean up I must put the plate in the dishwasher and turn it on and I think I can manage that' vs. 'to clean up I must unload the dishwasher I haven't had the energy to unload any other night this week, load it, run the first load, unload it, start filling it again, and hand-wash the pots and pans so I will sit on the sofa and cry instead.'

This is not a how-to for people who have to carefully manage spoons and money, who are living on that razor's edge, because it's incredibly cruel of me to suggest that the answer for them is "get a better job, a partner with the time and money and inclination to support you, and supportive friends and family." 

It's much easier for me to say to friends who've asked how you can 'give someone a spoon' when a loved one is really struggling, that there is a way.  Text them, "Hey, I'm heading to the grocery store.  Can I pick you up anything while I'm there?" to save them what can be an exhausting trip.  Offer to help them with housework.  For holidays or birthdays, ask them what *services* they need (deep carpet cleaning, help washing drapes and curtains, once-a-year cleaning/organizing tasks that the daily allotment of energy just won't cover).  The next time you're going to be near where they work, call them up and ask if you can drop some lunch by the office for them, or better yet, treat them to lunch.  Maybe they had a sandwich in the fridge, but maybe you're also the week's salvation.  If you borrow their car, give it back washed and completely full of gas.  Offer to walk the dog.  Mostly, just let them know you're available to help on their terms, and demonstrate that you're not interested in judging whether or not someone 'should' be able to do a thing.

Advocate for living wage jobs, especially for those with chronic physical or mental health issues, and for paid time off and universal health insurance.  Speak out against employer policies that require a doctor's note for a sick day.  Speak out against people who treat invisible illnesses as 'all in your head' or 'made up' and suggest that people should just lose weight, get out more, stop whining, or eat better.  That argument takes energy, believe me, and I have had to make the choice between engaging someone in it and having enough energy to drive home from work.

You can't make the lupus, or the depression, or the fibromyalgia go away.  You can't fix what's wrong or give your loved one your share of the energy.  But I remember a time when I'd spent literal MONTHS staring at my disorganized books, thinking "I love my books.  I hate so much that my books are in disorder, that I can't find them when I need them, that it looks like I don't respect them.  I wish I could organise them, but I'm just so tired."  A friend came over and spent two of her precious days just going through them, ordering and organising them with me, and at the end of it, even though it was hardly a life or death difference in my life, it was like a huge weight lifted off my shoulders, that I didn't have to come home, every day, and feel ashamed at the reminder that I couldn't manage such an important aspect of my life.

That single gesture, over the following year, amounted to handing me hundreds of spoons, one every single day that I didn't have to spend convincing myself that tomorrow, really, I was going to do something about it but it was OK to let it go for one...more...day...

Sunday, December 21, 2014

The Longest Night...Again

Blessed Yule, my loves.

To those holding vigil tonight, thank you.  To those who hold your vigils in a thousand different ways the year round, thank you.

Tonight we honor the idea of holding through the darkest times.  Of watching the sun go down, as the nights get longer and longer, and keeping faith that someday the night will be shorter than the one before it.  While the solstice marks the formal Longest Night, so many I know have been keeping their own vigils against fear and despair this year, independent of their place on the wheel.

'Getting better' is a long process, and one that happens by degrees.  From the bottom of the wheel, we do not magically run up the spokes from darkness into light; we embrace the slow transition from hardship to bounty, from isolation to community, from grief into celebration.  And always we know, as the year is a wheel, that even as we face our darkness knowing light will come, we must also know that the darkness will come again, and we will need those lessons we are now learning.

Tonight many people make much of "without the darkness the light cannot shine, you cannot appreciate the stars, you cannot embrace your joys."  To most people I know, darkness is most valuable when its contrast gives meaning to the light.

This is true, but for me tonight's contemplations run much more to "Learning to embrace and accept each turn of darkness as it comes to me gives me tools and lessons that help me survive the dark to come."

It's my nature and my honor to burn brightly through the darkest times; what is hard for those who do not do that to understand is that the light of your own burning means that sometimes, all you see when you look out is blackness, because you're blinded by the flame you tend.

And sometimes, when it's at its very darkest, and your flame is hard to keep going, you have a moment where you're afraid you're going to lose it all, that the light you hold will go out, and you'll be there, alone, in perfect pitch blackness.  Because, well, you know that theoretically there are other people out there, tending other fires.  But what if they're not there, what if your flame goes out and you were...the last one burning?

Coming to peace with that fear is one of the hardest things, to say "I will burn as long as I am able, and when I can no longer burn, I will embrace the darkness."

For the last ten years, when my own flame has faltered, in the dimming of my light I could make out others, holding flame to help me rekindle.  I have not yet failed in my winter burning.

But I have, several times, come to peace with the prospect of my light failing entirely, of being lost, alone and blinded, and that willingness to embrace the darkness not as a foil for the good times, but in itself, has given me a strength and an understanding I never really imagined I could have.

Thursday, December 4, 2014

Innocent While White is More Privileged than Criming That Way

I've been sort of contemplating how to put a real explanation to my own understanding of privilege as I experience it, and today during a conversation with a friend, this memory came up:

During college, I worked in a gas station, and there had been some isolated robberies of local stations.  One night, due to an electrical malfunction, the silent alarm went off.  I found out about it because my district manager called to see if I was Ok, and then the 911 operator called.  She asked me if I'd pressed the silent alarm.  I said, "Oh, I just got off the phone with my district manager about that; he said the alarm company called him.  No, I didn't push the button.  I'm not sure what happened.  No one's robbing the store."  She said, "Just yes or no, is there someone there in the store with a weapon?"  I said no.  She said, "Is anyone listening to you?  Is anyone at all there?  Are you being coerced?"  I said, "No, nothing like that.  I haven't had a customer for ten or fifteen minutes, even.  It's pretty slow tonight."  She said they'd send police.  I said, "Sure, if you want."  There was also a discussion about how I couldn't come out the 'front door' because there were doors on opposite sides of the store, but I would come to the east door.

Somehow this got communicated to the responding officer as 'suspected robbery in progress, employee may be hostage.'

Over the next ten or fifteen minutes, I continued stocking the cigarettes (pulling cartons out of the cupboard and stacking them up), dropped money because the alarm call had reminded me to check the drawer (opened the register, took out money, counted it, put it down behind the counter out of sight), and did the nightly liquor count (crouched down behind the counter out of sight, occasionally popping back up with a bottle in hand).  Meanwhile, a member of the police department arrived on scene and watched me do all these things, through a western window that didn't allow him to see any of the rest of the store.  I was not wearing a uniform, a company shirt, a nametag, or anything else to mark me as an employee.  Flannel shirt, baggy pants, combat boots, concert tee.

I eventually noticed the police car in the lot, and went over to the western door to wave at him and tell him it was OK.  There was no one in the driver's seat, so I stepped out to look around.  A hissing noise to my right caught my attention, where I found a cop, with his gun drawn, motioning me over to him.  He kept hissing, "Ma'am, are you all right?  Who's in the store?"  I told him, "I'm fine, there's no one in the store."

He had no reason to believe that the person who'd been pulling out cigarettes and liquor, and cash from the cash register, worked there.  But when I told him I was fine and there was no one else there, he got back in his car and drove away.  Didn't go in.  Didn't look around.  Didn't ask for any proof that I worked there.  Didn't call my boss and ask him to confirm my identity.  Didn't even ask my name or to see my ID.

At the time, I thought the overreacting cop with his gun out was just funny.  But in recent years, looking back at that experience, i understand just how differently that situation might have gone down if I hadn't been white.  How the fact that he was standing there with his gun drawn wasn't scary because it never occurred to me that he might shoot *me*.  How I didn't immediately think, "I should put on my company shirt so they don't think I'm a robber."  How it just plain never occurred to me to consider that 'not being a criminal' is not always a shield.  How easily I assumed that no one would ever think I might rob a convenience store by looking at me.  How somewhere, in the back of my own head, the perception of 'who robs a convenience store' was fueled by TV images of black gangbangers with their guns held sideways, and no one could possibly think that was me, so I felt safe.

Whether that particular cop would have reacted differently isn't the issue; the full set of experiences I had that dictated my expectations in my relationship with law enforcement is.  The words 'unjustly accused' or 'police brutality' belonged in tidy one-hour chunks of Law & Order or NYPD Blue, because those were a fiction I'd never seen personally.  In my world cops had mostly been, if not strictly helpful, at least benign.

There's a thing floating around that is 'criming while white', people talking about getting away with various crimes because of their white privilege.  I think that's probably less effective than understanding that inequality in justice and enforcement is not about whether I can get away with petty theft or assault without police treating me like a criminal, it's about how I can 'get away' with the daily experiences of my life that way.