When There Aren't Enough Spoons In the World: Helping a Friend Dig Out

Photo copyright Wings, 2014; all rights reserved.

On Friday, a member of the community at the GOS posted a diary. It was a very quiet, unassuming post, one that clearly sought not to be the center of attention even though it needed to be: So. Um. I need some help.

It reminded me of how I felt as a child, when I needed something but was afraid to say so, sitting at my schooldesk and barely raising my hand, then putting it back down again promptly and sort of hoping against hope that no one had noticed. It's a horrible feeling. It's what happens when you live in a society that doesn't take care of its own, and when circumstances combine in the worst ways to leave you hanging off the ledge by two fingertips, no safety net to break your fall a hundred stories down.

First, the important part: At the time she wrote that Rachel had admitted that she needed a good $1,900 to get her electricity back on (and keep it on). It's the middle of November, for heaven's sake; she can't head into winter with no power. I'm sitting here right now looking at four inches of snow, all dropped since 10 PM last night; tonight it's supposed to get down near zero. It's probably a bit milder where she is at the moment, but that won't last, and she certainly can't depend on the good graces of the weather to keep her warm and safe.

But yesterday, DallasDoc wrote a diary on her behalf, and it became clear that he'd wormed more of the real situation out of her. He set a goal of $4,500, which probably lowballs it a bit, based on her subsequent comments, it looks like something approaching $6,000 is closely to what she really needs to get completely caught up, forget about having any sort of breathing room. It appears that they were able to raise something over $1,300 toward that goal yesterday, but more is obviously needed.  

You can donate via PayPal here:  tiarachelgordon [at] gmail [dot] com

If that's all you need, you're set; you've helped someone in a very real, very tangible way. But if you need to know more about why her situation is so complex, so vexedly difficult, follow me over the jump, because I think this is where I come in.




Rachel has more than enough to deal with times are easier, much less when they're like they are now. She talks about a little of it in her diary, and I can only imagine what that cost her. When you deal daily with conditions that most people not only don't face but don't understand — more, don't want to understand, because to do so is not only inconvenient but upends all their pretty little notions of inherent personal virtue — simple existence becomes much more difficult than it needs to be. Add a severe financial hit to that, and it becomes damn near impossible.

I think part of my role here is to try to make people understand what she means when she talks about her health, and spoons, and what is doable and what isn't, despite what the people in charge of this country's policy as it relates to disabling conditions think. Because I'm there, every day of my life. 

Now, to be clear, I'm not projecting my own particular experiences onto Rachel. Hers are her own, and while I'm sure there are commonalities, I'm equally sure there are differences. But my readers here know me, and I want to try to help them understand what may be the broader dynamics of Rachel's situation by relating them to my own.

Here's what Rachel said:

Backdrop: I've got an assortment of health problems (fibromyalgia, chronic migraine, autism-related anxiety, depression, etc...). I was getting worker's comp (long story), but they started requiring me to look for 'appropriate' work, but define 'appropriate' as related to that one specific problem, not all the others. I just don't have the spoons to do customer service/retail, especially for what it pays. 

So A) I need leads to work I can mostly or entirely do from home, probably writing/science related (but not journalism), which pays in more than $5 or even $20 per assignment. And something that doesn't require me to hustle for each micro-job. I can also code a little, & could probably pick up some programming given the breathing space & a carrot at the end. (I could probably also do some sort of social media work, or something activism-related that isn't predominantly interactive. Dealing with people is one of those autism-related problems I've got -- I can do it when prepared, but not routinely. hence no retail/customer service). And of course the kind of thing I was doing with the Daily Show/Colbert diaries, when I was doing them: gathering lots of info and summarizing it into a brief narrative (with more time than I usually gave myself for those posts, I can even polish it up. So proofreading/editing/etc might be a possibility, too).

And again, I can only imagine what it cost her to write that, to lay that out there for anyone and everyone to read. When you deal with these kinds of issues on a daily basis, you get so accustomed to trying to get through the day, to blend in, not to call attention to your needs, not to exacerbate the difficulties of navigating life that you just simply don't talk about it. You learn early on, in childhood, that whatever it is you're feeling, nobody cares. Not in any sort of affirmative sense, anyway. Oh, they care, all right, when it comes to the negative attention, and so you learn fast not to draw that attention if you can possibly help it.

Any one of her health conditions would be enough, potentially, to make what the world considers "regular work" impossible. I should know. I've had the fibro diagnosis for years now, although no one's been able to identify why I also have symptoms that, no matter how hard they try to shoehorn them in there, don't fit into that particular trashcan diagnosis. [No, don't argue with me about that term; FMS is an actual diagnosis, yes, but the medical community also loves using it as a trashcan so that they can avoid dealing with more difficult, less easily compartmentalized presentations.] But no matter; they've given me the fibro diagnosis, so they can focus on that (which means mostly telling me how it's all on me to fix it), and they can forget the rest. Just once, I'd like the doctors and nurses to have to live in our shoes for a week.

Chronic migraine? Oh, I have chronic migraines, all right; my current one has been hanging around more than a week now. The longest one I ever had? I don't know, because on the twenty-first day, I quit counting. But I have "chronic migraines," small "c" and small "m." They stem mostly from an old injury (and now, also from a new one). I don't have what Rachel has, which is an actual medical condition called "Chronic Migraine." As I understand it, one of the diagnostic markers is that you must lose at least half the days of each month (averaged out over time, obviously) to migraine pain. It's a nightmare.

If you've never had a migraine, thank whatever gods or fates you answer to. The pain can be indescribable. And it's all-consuming, at least for me. No matter the amount of pain I have elsewhere in my body (and it's all over, all the time), I can at least adjust my body a bit, choose to stand or sit or lie down, whatever alleviates it a bit, and I can even  get my mind to focus on other things. Not so with a migraine. It's in your head, and there's no escaping it. You can't think; you can't see straight or speak coherently; you simply can't function. And yet, the working world doesn't care; you're supposed to be able to smile and say "Yes, sir," and "No, ma'am," and operate at the same level as you would if it didn't feel every minute that a pile driver was trying to shove your brains out the very pores of the skin stretched across your temples.

I worked that way for years. It's impossible. Artificial lighting aggravates it, sound aggravates it, temperature fluctuations in commercial buildings aggravate it. And there comes a point where the pain is so all-consuming that forget about smiling at clients and customers; you simply cannot think.

Then there's the depression and anxiety. In Rachel's case, part of that goes with being on the autism spectrum. There's so much more that we understand about this now than when I was a kid, but it's still nowhere near enough. And society as a whole doesn't get it. Business certainly doesn't get it, and doesn't want to. For folks on the spectrum, the Internet has been a godsend in many ways, because it provides a place to interact in an environment that each individual can control to a degree far greater than in the physical world. When the external pressures become to overwhelming, disengagement requires only logging off or shutting the laptop or (now) turning off the cell phone).

I was never diagnosed. At this stage of my life, there's no point pursuing it. But now we know that it's a condition that exists on a spectrum of what's regarded as accepted daily functionality. I've worked with people on the spectrum for many years, in two separate contexts: first, just simply as co-workers; and second, as part of a project related to the legal system's (including law enforcement's) understanding of mental health and developmental issues. I went into the latter with only the most rudimentary understanding, which is to say misunderstanding; I came out of it with a mirror. 

At any rate, I finally began to understand why certain interactions had been so problematic. I had learned — forced myself to learn, through sheer willpower — how to squelch most of my reactions, at least in public. Until my autoimmune disease took over my life, and then the depression that is inextricably intertwined with it took over my spirit. I mostly don't mind not having a phone; it means I don't have to talk to people just because they think I need to at any given moment. I mostly don't mind not really being able to drive right now (that whole concussion/migraine thing); it means I don't have to interact with people in ways that require me to be "on." As my physical illness has progressed, so, too, has this dynamic, and it's a very real one. If you've never experienced the psychic pain brought about by forced interpersonal interaction, consider yourself lucky, fortunate, blessed — and instead of castigating as malingerers those who quite literally cannot handle it, thank your lucky stars that it's one thing you don't have to deal with on a daily basis. If you can, maybe do a little to educate those in your own circles about this particular dynamic, too.

When I read Rachel's diary, I felt the painful stab of recognition that goes with seeing parts of your own experience laid bare in public. It was followed immediately by a desire to protect her from what I knew would be the reaction of some who read it: "Just get a job"; "beggars can't be choosers"; "you should be grateful for any work you can get"; on and on and on. It's what I expect in a culture where a lack of empathy is not merely institutionalized, but celebrated. 

But that doesn't mean that she should have that added to her already considerable load. For those of us with chronic conditions that are both disabling and invisible, we already feel like we're reduced to chipping away at it with nothing more than a teaspoon. Add loss of income and loss of such basic amenities of daily as electricity, and there aren't enough spoons in the world to dig out from under it.

So please: Even if you can't give dollars, send Rachel good wishes and moral support. But if you possibly can, please kick in some money, too. Over the last week, we've been blessed anew, and so we're in for a little to pay it forward. We're taking $50 out of a sale we made a couple of days ago, and sending it to Rachel. Can you match it? One hundred people giving $50, and she's out of a very big hole. Even a tenth of that — aggregated together, individual drops fill a bucket fast (as I learned all over again in literal terms when a monsoonal hailstorm knocked out the ceiling vents). 

So here's that PayPal address again:

tiarachelgordon [at] gmail [dot] com

If you don't do PayPal, and if you're a registered member of Daily Kos, you can also contact her here for a snail-mail address.


Chi miigwech.