Well that's $50 down the drain...

Chalk up another expense to exhaustion...


We had to board my cat for two days, to let the pest control chemicals evaporate for a bit. (I seem to be the only one amused by instructions begging you to keep your pet away for two days, but you can come on back after three hours. I swear PETA writes these things.)


When it was time to pick her up, I was so addled with exhaustion, I couldn't remember where her carrier was. So I just drove slowly/carefully for the mile and a half back to the apartment. And was rewarded with a big ole crap in the backseat.


I removed the actual offenders, but was too fatigued to actually organize a cleaning effort. My malaise continued until Sunday night, at which point I had to clean it up because I was picking Tim up the next day. So I opened up the back door, doused it in cleaning stuff and left it, as the instructions demanded.


The problem? I'm about 99 percent sure I didn't lock the door.


First thing we noticed was the remote was gone. It was a $25 deposit. But we thought perhaps I had just brought it in the apartment with me by accident. Then we went to get the office chair out of the trunk. The one that had been there for, like, a week and we just hadn't remembered to bring in. Except now, it wasn't there anymore.


I think someone noticed the door was unlocked and that the back seat pulls down. That exposed the office chair (still in box) and they helped themselves. It explains why no one took the small bag of miscellaneous office supplies up front: Accessing the trunk from the back seat, the bag wouldn't have been visible.


I'm pissed, too, because we waited for a good mesh chair to go on sale. (In case Tim needs to do phone work from home, the mesh will keep air circulating and prevent his skin from breaking out unduly.) I guess it's back to watching Staples sales.


Meanwhile, two $25 items are gone. Irretrievable. All because I just don't have the stamina of a normal person.


Don't get me wrong, my fatigue costs us in tons of ways that I've accepted and dealt with. I don't hit as many sales as I would like, because I have to apportion my energy to be sure other things get done. I sometimes pay a little bit in library fees because I'm too tired to get a book back on the due date. Little stuff.


But this one is new -- and pricey, at that. Especially considering that I'm normally a door-locking zealot.


I'm off to go stare at the empty spot in the office where a chair should be.

Bad wife! No biscuit!

Photo by Regenia Brabham

It only took me three and a half years to get a clue.


For three and a half years now, I've been yelling at Tim. Well, sometimes yelling. Other times, it was a rant or even a conversation. A lot of crying too. All of it trying to figure out why we kept having the same problems over and over. We'd figure out a compromise to a situation, but it wouldn't stick. Tim would still buy on impulse. He'd forget to tell me important things. And plenty of other instances. And I couldn't understand why.


Now that I'm reading some books on ADD -- right now, I'm working on a Thom Hartmann book, which stresses that ADD shouldn't be viewed as a disease or illness, just as a fact -- I see Tim in these pages. The traits described in the book practically paint Tim's portrait.


So many of the things I got angry about were listed as characteristics of ADD. It made me start thinking. About all the times I lectured and ranted to Tim, furious and exasperated over yet another misunderstanding. Or the times I angrily told Tim I couldn't deal with it anymore, had tried to compromise, and now he needed to come and meet me in the middle. And all the times he sat there, miserable and penitent, promising he'd do better.


It made me feel pretty terrible. I feel like I failed him in some very basic way.


Tim says that I'm overreacting -- though he certainly appreciates my apologies -- because there was no way I could have known. Except that I have known for years that he has ADD, and I've made very little effort to truly understand what that means. I figured it just meant he was impulsive and forgetful.


And it's not like Tim could have corrected me. Thanks to a lot of factors, he really doesn't know much about ADD either. I asked him if/how they explained ADD to him, since he was only about 10 at the time. He isn't too clear on the specifics, so he just remembers a general feeling of, "This is why Tim can't sit still."


So they put him on Ritalin, which was a resounding failure. Lacking other options (this was back in the late 80s, when Ritalin was more or less the go-to med), his parents put him in Special Ed. There, he learned a few classroom coping skills -- mainly how to focus by blocking everything else out. After a year and a half, they were satisfied enough with the results to put him back in his old school.


And then? Nothing. His parents never tried new medications. They never tried to find out more about the condition. They never took him to a doctor for it again, or had him see a therapist (psychological or occupational) to help deal with it. He was just expected to pick up and move on.


So, really, how could Tim know what sprang from ADD and what didn't? How could he have told me when I was making unreasonable demands? Neither of us realized just how thoroughly ADD affects everything.


But we're learning, that's for sure. As I read, it's becoming clear that ADD pervades most of his personality. In other words, he's spent most of his life beating himself up for things that are hard-wired into him. Not to mention all the time other people were giving him grief.


His parents would tell him to clean the kitchen and get angry when, hours later, he was not finished. They'd accuse him of slacking off. In fact, Tim sees every item in the kitchen as a separate task. Looking at the kitchen that way, it's no wonder he feels overwhelmed at the prospect. No wonder he never knows where to start.


Our solution? I'll get him started. If I want him to clean the kitchen, I need to write a list of what I want him to do, and then we'll decide together on which task to start with. After awhile, the list may become ingrained in Tim's mind. If not, he'll have an iTouch around the end of January. He can make lists for various chores, errands and other situations.


It'll be a lot of work. And it will involve more misunderstandings, I'm certain. Plus a lot of trial and error. But at least we'll be working together instead of butting heads. I'm kind of appalled to look back and see how much time Tim and I have wasted by trying to undo basic personality traits.


And yes, I understand that we have the rest of our lives ahead of us. I also know hindsight is 20-20. Still, I feel like this should have been a priority long before now.


I guess, in the end, what matters is that I'm making it a priority now.

What lower prices?

It's not just economists who are insisting the recession is over. As many of you have probably heard, Social Security recipients won't be receiving a cost-of-living adjustment (COLA) this year. This is a first in 35 years.


So what heralded this change? Why, it's simple: Prices are going down. Or so says the equation that determines the COLA.


My only question: Where, exactly, are these lower prices?


Looking through the grocery store, I don't see much of a change. All that packaging that got smaller, while prices remained the same (or worse)? Still small. The prices? Still big.


There are plenty of food sales that make prices seem lower. And if you can catch those sales, you can definitely eat cheaply. But most of these tactics were around during boom times, as well. They just had fewer fans.


So where are these lower prices that made the COLA equation believe that seniors and people with disabilities could get more bang for their buck? Simple: Non-necessities.


Sure, you can get a great deal. If you go shopping, the stores practically roll out a red carpet. Everything's on sale, all the time -- because it has to be. People have finally clamped their wallets shut on a lot of unnecessary spending. They are occasionally lured in by a good sale, but they're wary and ready to bolt if things get too pricey.


Merchandisers aren't the only ones clamboring for people, either. Restaurants are flogging meal specials -- usually in the realm of 2 for $20. It's hard to walk past a bar or club without tripping over a happy hour special. Salons and spas are in on the act, too. Not many people can find room for $60-70 massages (plus tip). So there are introductory offers everywhere. Anything to get you in the door and familiar with their level of service.


So, yeah, there are great opportunities for specials that will stretch your dollar. But -- and here's the acid test -- how many of these places are patronized by senior citizens and other people on restricted budgets?


I'm sure that some seniors and people with disabilities pop into Chili's, Outback and TGIFriday's, but those folks aren't exactly the target audience, are they? People living on truly fixed incomes -- under $20,000 per person per year -- aren't going out to eat much at all. And how many seniors do you know who go to bars and clubs? Meanwhile most SS disability recipients are unable to work more than part-time. (If you earn more than $980 a month, you stop receiving benefits.) That means they're probably not healthy enough to go out a lot either. Trying to work around a disability, I can assure you, takes a lot out of you.


Yes, everyone needs clothes and shoes at some point. But these are people who know how to make do and how to do without. They shop at thrift stores or, at the very least, huge sales -- and they come armed with coupons. There are always cheap shoes to be had at places like Big 5, Target, Wal-mart, or on various store clearance racks.


But what about things you can't avoid? You can be careful about utilities usage -- turn off the lights, use the thermostat less, take quicker showers -- but you can't avoid it completely. And I've yet to hear about those prices lowering. (If anyone does know of a case, please feel free to correct me!)


In some areas, rents have lowered overall. But mostly it's just a proliferation of specials. While this can help minimize rent, you still have to be free of a lease and have good credit. In addition, the better offers are usually from the nicer communities. If you're just going for affordable rent, you won't get much of a break. And all the recent foreclosures mean a lot of renters on the market. It's a mixed bag. Oh, and let's not forget that you have to be able to save up a deposit -- if not first and last month's rent plus deposit. Could you do that on $1,000 a month?


If they're lucky, seniors will have their own homes. Then they are only responsible for insurance and property taxes. Both of those keep increasing, although some people have at least gotten a tax break as their house values plummet. If you rely only on Social Security payments, that could easily account for 1/3 of your income. And you better hope that no events cause you to need your homeowners' insurance. That will just increase your premiums.


Meanwhile, gas prices are back on the rise, assuming you have a car. If you don't, you can get discount fares on buses -- assuming the transit is any good where you are -- but even those costs will go up, especially as gas prices keep increasing.


Groceries can be gotten cheaply, of course, if people shop the right sales and stock up whenever possible. Of course, if you do this by car, it can mean more gas, as you shop at various stores for what you need, and perhaps make multiple trips to truly amass a full pantry. If you have to do it by bus, you're looking at a lot more problems and a lot more physical work. And all those sales are still based on smaller packages and/or higher prices.


And let's not even get into all the doom-and-gloom predictions of runaway inflation -- which would mean we actually get less for our dollar, not more. Even if the dollar does recover, there's absolutely not guarantee that the recovery will last. In fact, it seems that every proclaimed recovery -- in dollars and stocks -- is followed by uncertainty or even reversals. So what if the dollar plunges in the last half of the year? What do seniors do then, besides wait for the next COLA determination?


So, to recap:

• There are lower prices -- but almost exclusively in items that most seniors and people on disability do without. There are food and drink specials, but most of the Social Security population don't make it out to bars and clubs, or even too many restaurants.

• On the other hand, basic costs of living, such as groceries, rent/property taxes, utilities and transportation, keep increasing.
  

• The dollar is fluctuating and a lot of people are predicting inflation -- runaway or otherwise. Any recovery that does happen, may not last.
  

• Seniors and people on Social Security disability are getting more for their money, which is why they don't need any cost-of-living adjustment in the coming year.
  

Can anyone explain this to me? I don't speak bureaucrat.

Murphy's Law: 1,764. Us: 0.

This may be a tad disorganized. I'm sleep-deprived -- Restless Leg Syndrome kept me up til 4 a.m. and then woke me up again at 10:30 a.m.


Suffice to say, it's not been a good couple days.


Saturday, I checked our bank balance, and had a nice little heart attack when I discovered we were negative nearly $200.


After a minor bout of apoplexy, I checked the transaction history and found that Tim's health insurance had taken out $502. This was news to us, given that last month the premium was $336.


Sure that it was a mistake, I went to the website to check premiums... And discovered that Tim's rates had been raised by $60ish because he just turned 30. Combine that with the new, 2009 rates ($100 more than last year) and voila, you have an impeccable charge that nevertheless screws us over big time.


Luckily, a relative recently offered us a no-interest loan -- with payments not starting til June. So I zoomed over to the bank and threw the check in the ATM, thereby avoiding about $90 in overdraft fees for that day alone. (Another $60-90 for Sunday/Monday, too.)


Okay, fine, so (more accurately) the title should be Murphy's Law: 1764, Us: 1.


Point is, now we don't get to put the full check amount toward debt, which was disheartening to me. Also, $100 of mine that was in the bank from Christmas, waiting to be spent, was sucked up by the $502 charge.


Meanwhile, on Monday, Tim ran a couple of errands, including going to the bank for quarters for laundry. (He'd used the last one that morning. I skipped a shower so that he wouldn't have to.) Turns out, despite the fact that our relative also banks at WaMu, the check is still being held. According to Tim, they said something about it having to go downtown, since I put it in the ATM and not the night drop box? I don't get it. Nor do I care to.


The upshot is that we have nothing in checking, despite having a ledger balance of nearly $2000.


So I woke up today not just sleep-deprived and seriously considering leg amputation, but also desperately in need of a shower. Seriously, it's a good thing my cat's part Persian, so she can't really smell much. Otherwise she'd be scampering away, yowling in odor-agony.


I went and borrowed some towels from mom so that I can stand to be in the same room as myself. (Yes, you read that right.) And we will probably have to borrow some quarters from her too -- which we can pay back along with the cash I had to borrow from her yesterday for my therapist.


See, it turns out that we're out of checks. Of course, I didn't know this last Monday, when I messed up on the check to my counselor. In case you're wondering, you can mess up a check several ways -- which I have proven in the past -- but this particular time it was by writing the amount of the check on the "Pay To" line.


So, having promised to mail her a corrected check, I get home to discover that's impossible. The next day, Tuesday, we went to the bank and ordered new checks. But, of course, they didn't make it here by yesterday evening. And my balance was rather high, given a few missed sessions from snow and icy conditions. (I grew up in Anchorage. I can drive on snow and ice. But Seattle drivers in those conditions? Terrifying.) So I begged some cash off mom, promising to pay her back as soon as WaMu stops being an idiot. Or, at least, once the check clears.


So, just to recap briefly:

• Out of towels
• No laundry money to do towels
• Very stinky Abby
• Very exhausted, grumpy Abby thanks to RLS
  
• No checking funds available
• Ledger balance of nearly $2000
• Check being held, despite being drawn on a WaMu account and being put into another WaMu account.
• Health premiums up by $156 in the span of 30 days.
  

The only moderately hope-inducing item in this tale of woe is that the Washington State Health Insurance Pool has a low-income application. If you make sufficiently little, they will give you a discount on your premiums.


I had Tim call and find out whether there was a distinct cut off or if each case was evaluated individually. The operator said they hadn't yet been told the 2009 income cut-offs, but 2008's was $2900.


Given that this is what I thought we were making, I did a little happy dance. Then I froze mid-dance.


My Social Security went up by $46/month. And I had been rounding Tim's unemployment down a bit in my head calling it around $1200 instead of what I now realize is $1364. Add $1364 and $881, you're up to $2245. Now realize that I make $900 a month for my contract work. We're up to $3145.


Of course, since the premiums went up by around $100, chances are that the cutoff rose by around that much. But that would mean I may still have to earn $145 LESS a month, just to save some undetermined amount.


You have to love bureaucratic math.


So, we're going to go ahead and apply, with a letter attached from me saying that we have these debts and list them. Then mention that my work may be getting cut down to $750 or $800 a month. If that lets us qualify, then I'll just have to invoice for less. Assuming the premium goes down by a sufficient amount.


Don't get me wrong, if absolutely necessary, we can pay $502. But it's really a big chunk out of our debt-reduction budget.


And there's always that fun experience of being just over the arbitrarily-determined bureaucratic cut-off. $2899 a month? Sure, of course you can't afford the premiums and here's some help. Poor thing. $2900 a month? Pssht, you'll be fine. Whiner.


Okay, okay. I know the government has to draw the line somewhere. But it's still a very strange concept, when you get right down to it. One dollar either way and you're either indigent or middle-class.


The only thing keeping me going is the idea that, even if we are over the cut-off, there are sometimes loopholes in the system. Provided you appeal enough to the right people. Which I plan to do -- as much as necessary.


For example, when Tim went into the hospital while we were dating, the financial aid people could only count me as a dependent if we were married. So we fibbed a bit and said we were engaged. (A couple of months later, we actually were.) It still didn't really count, since we weren't actually, legally married.


But once we explained that I was on disability and that Tim covered pretty much all expenses other than rent for the two of us, the lady agreed to take that into consideration. We ended up paying nothing for the hospital stay -- which, by a lucky coincidence, is exactly what we could afford at the time.


This kind of stuff just reinforces my very basic belief that there's generally a way around the rules -- so long as you ask repeatedly and are stubborn enough to wait until you get the answer you want.


So, we have had a veritable cavalcade of bad luck, lately. We have a plan to move foward, which helps a little. Meanwhile, we're just trying to get through it and shrug off most of the bad feelings.


I wish I could say that, at the time this all happened, I handled myself with quiet dignity. In fact, I had a mini-meltdown. Just one of those straw-the-broke-the-camel's-back moments. One of those straws being that I lost $100 of money I was supposed to spend on myself. Since the only money left in the account will be loan money, which is supposed to go directly to debt, I was having trouble with the idea of still spending as planned.


Both the lender of this money and Tim have scolded me. They told me it's not my fault the premiums went up. (Perhaps if it had been as a result of my actions, such as an overdraft, they might feel differently. Now they're just telling me to shut up and indulge myself.)


So, I have that to look forward to. In addition, I can always look backward, meaning I can take comfort from the fact that I have been in far worse situations. For example:


I was earning $1200 a month working at a part-time job (quickly digging myself into the hole on energy, no less). My part of the mortgage had just gone up to $600, since I had kicked out a no-good boyfriend. And in a three month span, I experienced the following:


Had the ex threaten me (in the hearing of tenants who then called the cops.) In Washington, if you've lived together, a threat is enough to be arrested for domestic violence and get a one-year restraining order slapped on you.


Three major appliances died. First the stove in the Mother-In-Law apartment downstairs. Replaced for around $350. Then the dryer. Around $300. Then the wall oven/stove top in the main house. That was a little pricier. Had a guy rip out the stovetop/island and put in a stove; take out the wall oven and put in more cabinets. Why, you ask? Because wall ovens start at around $1100.


Right at the end, I secured a full-time job. (I, of course, ended up having to quit from fatigue a couple months later, but at this point I was securly entrenched in denial.)


The last day of training before officially starting the job, I came home to find everyone standing in the street. There had been a fire and everyone had to be evacuated for what turned out to be over a month.


I just listened to the news, shrugged and said, "Well, we were running out of appliances to have break, after all."


It's all about keeping that bitter, ironic sense of humor, I tell ya.

Do I need an attitude adjustment?

I was perusing The Wisdom Journal, via Twitter (yes, I have finally taken a sip of the Kool-Aid) and something he wrote was both thought-provoking and immensely irritating.


Under the subheading "Choices," the author wrote:

Where you are today is the result of the choices you’ve made, the experiences you’ve felt, the associations you’ve cultivated, the words you’ve spoken, the ideas you’ve had, the beliefs you’ve clung to, and the habits you’ve created. You are more in control than you give yourself credit because 99 percent of the time, your attitude determines the choices you make, and your attitude is the only thing you really control.

Okay, most of this stuff is deep and basically true. Except for that whole big part about choices.


Here are the choices I have made:

1. I chose to go to University of WA rather than graduate $100,000+ in debt from Cornell. So you can either argue I might not have been exposed to Guillain-Barre out in Ithaca, or that I'd have died when my respiratory systems failed, because it's in the middle of nowhere.
2. I chose to keep working. Kind of a misnomer, actually, since it was pure denial and stubbornness more than active choice. But it meant I didn't get disability early on which may have caused some extra debt.
3. I chose to marry Tim. I knew that, between the two of us, we needed our own little bubble, we're so sickly. So I knew paychecks would never be for sure. And, a month before the wedding, he was fired. So I definitely had a clear view of the uncertainty in our future when I said, 'I do.'

So that it's, really. Those are my choices. Sure, there are lots of smaller ones in the day-to-day stuff: whether to have a drink with friends, whether to fling myself off the couch and cook or admit defeat and order pizza, etc.


But by and large, choice hasn't had a whole lot to do with the last decade or so of my life. I chose to seek therapy, which was certainly better than suicidality. I chose to get medicated (see the last remark). But I doubt my attitude determined my being in a hospital for 4 months. Or any of the fallout from that.


Does my attitude shape my decisions now? Yes -- for better and for worse. Some days, you just can't be chipper. I don't care how many optimists you throw together, when you have a long-term, debilitating illness, you're going to have bad days. If not, you're still in denial.


There are days when you need wail and gnash your teeth. Cry that it's not fair. That you didn't ask for any of this. And then you can get up and get on with life. Except maybe watch some TV and eat a little junk food for comfort. Theoretically, mind you.


But I guess my point is that I've been stuck in a more or less reactive state since the age of 19. Most of my decisions have been made based on a narrower set of choices than healthy people.


And I don't say all this to make a big pity party in my honor. I'm working on making peace with my limitations. Slowly. But I'm working on it.


My point is that, reading personal finance blogs, you'd think Tim and I were out on European vacations and driving two SUVs. We've certainly discussed the fact that most PF blogs are targeted at a very specific audience. But it still gets pretty exhausting when you are looking for support and still leave wanting.


It's not that the tips and ideas are bad. Just that most are completely non-applicable to our life. I've gotten some good ideas off PF blogs, certainly. If I'm lucky, 10% are applicable and perhaps 2% are things I haven't already thought of/tried.


In a way -- actually, scratch that, in every way -- it would be so much easier if Tim and I were the target audience for these debt-reduction blogs. I don't love admitting when I'm wrong (luckily, I never am, right?) but if it were simply a matter of our flagrant over-spending, how much simpler would it be?


How much better would it be to simply bite the bullet and cut back? Not that changing a lifestyle is easy, of course. But it's a hell of a lot easier than already living bare-bones and still being in debt.


If Tim and I could just work more, hell we'd both be thrilled to. (Okay, the joy wouldn't last long. But if it were a short-term solution to getting out of debt, and we could actually effect change? Hoo-boy, you better bet we'd be covered in papercuts from all the job applications we were handling!)


But not everyone gets the same choices in this life. And while, as The Wisdom Journal notes, attitude is very important, it's not determinative. In fact, where you are in life isn't always the result of your choices. Sometimes, your choices are the result of where you are in life.


I'll leave this chicken-and-egg question for the philosophers. No PF blog can be relative to everyone all the time. And I hope I don't appear to be suggesting they should.


Still, it would be nice if generalized statements could take into account more lifestyles than the writer's when they are made. Whether that's a fair expectation, I couldn't tell you.


It's just my attitude on the subject, I guess.

Why aren't we a target audience?

I'm in a mood.


I sat down at the computer this afternoon and caught up on some PF blog reading. Unfortunately for those on my blog list I was a little easily rankled today and left a few slightly snarly comments.


The one that really got me going was the review of the book You're Broke Because You Want to Be.


I get that the vast majority of Americans reading PF blogs are the ones who got there through overconsumption, etc. But, man, I just get tired of never being in the target audience.


This guy's book has a catchy title and attitude sells. I get that. But what about those of us who did (almost) everything right?


I'm not claiming to be perfect. I chose Tim, knowing he was impulsive by nature. That manifested itself in a lot of small purchases that added up fast. And I even chose to let myself get carried away in that spirit from time to time, so that I could justify a few shirts or whatever from Macy's.


For the record, I consider a shopping "spree" to be, well, anything over $20. But the instances I'm referring to were around $100-150 each. Still irresponsible. But the inner-grouch in me points out that lots of people spend that much each month on coffee drinks.


At any rate, we're not well-off. Anyone who has read any of my posts about our life know that. We're living on $3,098 a month, and Tim's insurance (which is lower than his COBRA) is $336 each month. Our rent is $700. Then there are doctor's visit co-pays $15 each, at least two a month. And the $500 deductible the new insurance has. And medications (my energy pills are $107 per month when bought in 3-month bundles).


Still, we're doing our level best to chip away at the debt, even as more expenses pop up right and left.


And since I spend so much energy on not going stark, raving mad from the sheer, endless onslaught of life's steady progression, well... It is easy to get sick of these books' bland blandishments. Catchy phrases sell books, but there are no pithy summations for people like Tim and I. (At least, none that I can think of at present.)


Perhaps the worst part about these books is that you start to feel so universally left out. You're told to cut your coffee drinks. Never had a taste for the stuff. Downgrade to basic cable. I was already there. Shop supermarket sales. Doesn't everyone do this anyway?


You start to feel so alone, because these books ignore that some people aren't in debt from the choices they make. Unless the uber-conservatives want to go a step further and start calling disability a lifestyle choice.


Yet I know there are lots of people in this country on disability. Or low-wage earners who have to fight to stay out of debt. But all we ever seem to hear are the sob stories from reformed spendaholics.


What about those of us who never got to have that fun in the first place? What about those of us who are just struggling to survive life, rather than survive our own personal-finance blindness? How do we keep going? How do we find corners to cut?


Why isn't anyone speaking to us?


Well, the answer is simple: We never so much as clear our throats, much less ask a question.


Until we start getting ticked off -- okay, so I'm already there but I was always a fast learner -- and start making ourselves a target audience, of course the sector will be overrun by spoiled spenders.


So far as I've found yet, I'm the only disability/PF blog combo. And I only started because I was pissed off that no one else had!


Why aren't we talking to these brilliant PF gurus? Why aren't we saying, "No, we're not lazy! We're not spending stupidly! Now what else have you got for us?"


I don't even think they've much considered our situations when they write their books. Because, really, why would they?


Suze Orman said that she rewrote her rules for Young, Fabulous and Broke only after a friend's daughter told her point-blank that her advice didn't apply to the current generation. That the rules were different. Orman thought long and hard and then started writing for this new population.


We're never going to get answers until we ask a question. And my voice shouting into the void of the blogosphere probably isn't enough to do it. Even with nepotism and intrigue, I'm still a newbie blogger who has a ways to go before she can be called "popular."


So what are we to do, folks? Or, rather, since I'm doing my part: What are you going to do?


Because if I have to read one more debt book putting the blame on my indulgent lifestyle, I may actually have to start screaming.

Confronting the past, facing the future

I know I've been a tad reticent. Here's why:


Wednesday night, Tim started complaining of a sore muscle in his chest. Apparently, it had been present for a couple days. But suddenly it was so bad, he felt like he couldn't breathe properly. And so off to the hospital we went. (Though, until he went into more detail, I was the kind of delightful caregiver that sneered he needed to take an ibuprofen and get in a hot shower. Sometimes my healthy skepticism is a little too robust. And, ironically, about the only thing in this marriage that actually is healthy.)


Anyway, we showed up at the ER around 11:30 p.m. and got out at 5 a.m. Delightful.



The past


An added fun element was that we were stuck going either to UW Medical Center (where I myself went and so have all sorts of fun Post Traumatic Stress associations) or Harborview (the hospital you go to when you don't have insurance, so the staff is jaded, the wait is long and it's generally awful).


We went to UWMC. Most of the time I was fine. But near 2 a.m. I ended up going out and pacing awhile, tearing up and just walking off some minor-level freak-out.


Tim was given three nebulizing treatments in a row (plus a steroid) to open up his lungs. The docs figured the crud we're both getting over had hit him harder. The extra coughing and extra gunk in his lungs had seriously strained some muscles to an extreme.


We went home and tried to sack out. (Tim's meds all have stimulant effects, so he was up pretty late.) The next day, I woke up at 3 p.m. and had just enough time to shower, get dressed and grab a quick bite. Then we were off to the much-anticipated preview for Quantum of Solace. It was awesome. I'm usually pretty wordy, but that truly is the word. Jam-packed with action, very no-nonsense. If you liked Casino Royale, you'll be very happy indeed.


All that excitement, plus the activity of the day before, meant my body decided enough was enough. We fell asleep somewhere after 2 a.m. (our schedules still off a bit) and I slept until 3:40 p.m. I think it's fair to say that I stressed my system out a wee bit.



The present

Anyway, as I'm finally approaching a normalized schedule again, I find myself staring down a lot of anxiety-causing things.


For example, Tim's check to the insurance company still hasn't cashed. Monday morning he has to call and make sure they got it. (The last thing we need is to find out that he wasn't covered. Obviously, we'll qualify for financial aid, but it's a huge hassle we really don't want to go through if possible.)


Even so, that ER visit will be at least $75, probably $100 in co-pay, plus whatever part of the deductible may apply ($500). Then, Saturday, Tim went and filled a prescription from his doctor for an expensive steroid medication. It is helping him use his current inhaler less. And, to be fair, it's making him feel better overall.


But imagine my extreme displeasure at the surprise: He had paid $200 for it. While I'm glad he's feeling better, he told me this after he had purchased it, so there was no recourse. I couldn't check into cheaper alternatives, samples or company-provided medication for low-income individuals. That's just $200 out the door. Or, more correctly, on the card.


And since his insurance hasn't gone through yet, we've already shelled out $73.99 for another prescription this month. We will have to apply to the insurance company to be reimbursed.


Then there's a certain amount of anger and resentment that stirred in me Saturday. We had a long (tense) talk about the state of the union, as it were. Apparently, Tim has been far more stressed than he let on about the Dept of Vocational Rehab. (Imagine that, a man not talking about his feelings!) It's bad enough for his sensibilities to be asking for help, but as a safety net he has to apply for disability. I think that was the proverbial straw.


All this stress meant he took up smoking again. Behind my back. So, he lied for three weeks and didn't talk to me about some pretty big issues. That creates some feelings of betrayal on my part. On the financial side, these actions are adding up even more:

• He was coughing more because of the smoking.
• The coughing led to the pain.
• The pain led to the ER ($100 co-pay, minimum)
• When he mentioned this and his using more than one inhaler a month (which he only does when smoking), the doctor urged him to give the new ($200) prescription a try.
• The other $73.99 prescription was for Wellbutrin to help him quit smoking.

In other words, in addition to actual cigarette costs (around $50 for three weeks), Tim's falling off the wagon has cost us nearly $400.


I was not thrilled.


That said, I have been known to let things slip through the cracks when my depression takes over. Never quite to the scale we're looking at here. But I wasn't expecting perfection when I married. God knows, Tim wasn't expecting perfection. (I know this because he has yet to run screaming from the apartment.)


This is a tough time, but I look back at the terrifying time that I had when I was applying for disability. Until we lose it, most of us never realize how much of our identities are wrapped up in our ability to earn, to bring in a paycheck.


It's a basic issue of self-sufficiency. We know that, whatever happens, we can always work harder, take a second job, or something like that. And there's a sense, as you approach the dreaded term "disability," that you are only as valuable as your monetary contribution.


I know I wondered who would ever love and accept someone who might never be able to earn a steady paycheck. I also wondered who I was, if I was someone who didn't work. It's a major identity crisis.


And all this angst was without the added strain of macho-BS that pervades our culture: Men must bring in a paycheck. Women can choose whether to work, but any man not working is automatically a drain or a mooch.


So, as I get angry and as I see the bills mounting, I have to remember just how badly I dealt with all these issues myself. I had just sold my house so that I could pay off my student loans. I wasn't working, I was applying for disability, and, at age 25, I was living with (and being supported by) my mother.


Suffice to say, I burned through a couple hundred dollars pretty quickly before I yanked myself back to reality. I had been going out, drinking (cheaply, but still self-medication is not a good idea) and just avoiding the very unpleasant reality that my idealized life was shattered, lying on the floor in front of me.


It was up to me to roll up my sleeves, grab a broom and dustpan and take care of the mess. And that only happened slowly over time and with a lot of therapy and even more support from friends and family.


So, in and among my anger at him, I do understand Tim's actions. He's been going out and playing Magic or talking about Magic. He's always got energy to go out, but not to get basic things done, like researching ADD coping skills. He basically withdrew from the ugly bits of life. And who can blame him?


But I can call him on it, which I did.


I told him his actions were understandable. But I was angry and hurt and tired. He is a married man now, and however unpleasant and scary some of these things are, he can't just pick and choose reality.


He hadn't even realized he'd been doing it. (Do we ever? Some things are only diagnosable in retrospect.)


Moreover, I was crying and just so angry overall. I told him about how much time and energy I've spent trying to sell things and otherwise bring in money. Yet even with the extra funds, we're barely making a dent on the credit cards.


Every time we turn around, we're confronted by more unexpected expenses. It's exhausting and discouraging.


Two weeks ago, I made an $800 payment on a card. But the total debt was only $100 less than the last time we made a payment. (Tim's realignment had to be done before his dental insurance ran out; I buy my medication in 3 month increments. Between the two, almost $700 went on the cards.)


This week, a $426 payment brought the total down by less than $100.


And this is while we are trying to pay for more items with cash!



The future

So what are we going to do?


Well, there's only so much we can do. Until time travel is perfected, we can't stop him from having smoked and all the fallout from that.


What we can do is look toward the future.


Since Tim and I have very disparate financial styles, we've been trying to work individually on change, with moral support coming from the other. Clearly this isn't working all that efficiently.


Instead, we've decided to think of it as presenting a united front. That means that our spending goals have to be the same. In the past, in deference to his spender-ways, I've allowed Tim a little more latitude than I give myself. In addition, I've become a tad lax.


Now I have to hold both of us to the same standard. We have to work together to keep each other on the straight and narrow, which, until now, we've often been too distracted to do.


Tim has to call me on my excuse-making for the occasional indulgence. I have to remind Tim that even little expenses like an Auntie Anne's pretzel is too much (especially when you add in two cheeses and a soda!). Essentially, we have to find a positive form of nagging each other. It will probably sound a lot more positive when I find a word other than "nagging."


One thing I'm suggesting is that Tim make things into challenges. I think this will appeal to his sensibilities more than strict, unending edicts. He's considering the idea. I told him we can start small: one "no spending" day, and if that's successful, go for two next; or try for a solid week of eating only at home. Anything that makes it more a test of will (he, like me, is very stubborn) than straight-up deprivation.


We bought two Rachel Ray cookbooks at Sam's club (yes, I know, spending to save seems so ironic!) which should give us less excuse to eat anything besides what's in our cupboards. We're going to severely pare down the groceries. I told Tim we will be sticking to lists when we go to grocery stores. We'd been moving toward it, but he's very impulsive and will often not know what he wants until he sees it.


The new deal is one special item each per week. Today at Sam's Club he got a package of 3 beef jerky bags for $9. I got 3 bags of crispy mint M&Ms (my latest addiction) at Grocery Outlet. Those have to be it for the week. We stick to no-nonsense groceries and only those.


In addition, we're going to make more simple, cheap foods rather than trying to be too interesting and new. Right now, we need to view food as nourishment, not entertainment. It'll be healthier for my wallet and my body.


Part of what has been standing in our way there is Tim's stomach. It's more sensitive than anyone I've ever known, except for one guy with Chrone's disease. Just trying to eat something he's not interested in can make him retch. I finally convinced him that's not normal. He and his doctor are taking some steps to figure out whether it's something in his diet.


Tim has redoubled his efforts to find ways to cope with his ADD symptoms. One avenue we're currently pursuing is using an electronic organizer. This should help him be less forgetful.


Until recently, he was using his Razr, but we think that may be why a big chunk of data randomly disappeared from the phone.


Instead, we're going to try to find something designed more for his needs: a calendar, complete with alarms, a to-do list and a place to write notes and memos to himself.


Unfortunately, electronic organizers are not all that common, and PDAs are giving way to smart phones. Both cost hundreds. And to get a smart phone down to an affordable price, we would have to sign a 2-year contract somewhere. I'm not eager to jump back into a commitment, plus it's no longer my decision. It's my mom's account, now.


We have a few tricks left up our sleeves: ink cartridge trade-ins could give us substantial credit at Staples/Office Depot/Office Max, and MyPoints offers gift cards to a few good stores. to several PDA-selling stores, including Amazon). Still, I think a solution is going to be at least a month in coming.


The really big change, though, is that Tim's agreed to try a therapist. This way, he'll be able to talk to someone about his doubts and fears regarding disability. I can prattle until I'm blue in the face that I love him and, regardless of work-status, he's a person worthy of respect and love. But it's kind of like your mom telling you you're cool.


This lady can help him see -- just like my therapist did -- that disability isn't a life sentence. It's just another adjective. It's an unpleasant one to be sure. But it's just another way to categorize yourself. It doesn't have to define you or your career (which is what he most fears).


Well, it's far too late. I need to get myself into a shower and into bed. I am trying to set up a more normal schedule.

I hope this post wasn't too long, but I had some catching up to do.

Crying in a supermarket

It's amazing how uncomfortable people get when you are crying in public. Very strange, really. We all feel so awkward, don't we?


I mean, it's not as though any of us are new to the concept of bawling. But it's as though the person just became highly contagious. People are afraid to approach you.


As you may have guessed from the title, I had a minor breakdown today at Albertsons. And the only reason I was even able to get my butt into Albertsons was because my mom drove me. Talk about feeling mature.


I was so tired that the new layout confused me. It's been this way for about three months, but I'm still adjusting to it. And today I kept looking for things in their old spots.


We'd only made it about three aisles over -- having successfully added milk to the cart -- when I was looking at salsa. We needed some. But Albertsons charges $8.49 for a big bottle of salsa. About two blocks up the street, at Sam's Club, the same stuff is under $4.


So I stood there, looking at the list, looking at the price, list, price, list, price. And all I could think is that I didn't want to take another step. So how could I make it up to Sam's Club? But I also couldn't pay almost $5 more when the cheaper stuff was two blocks away. And I couldn't get it another time: We needed it for that night's dinner.


I went to look at pasta, because it was too depressing to be looking at salsa I couldn't buy. And that's when the waterworks started. I was exhausted, I wanted to be at home, and I couldn't even get something as simple as salsa.


Part of this reaction was simple fatigue. Between the contract work, the blog and Tim's job stuff, there's been a lot going on. The lack of job weights heavily on Tim, as does not knowing what he wants to do.


Partially because of the stress from this (my opinion), his ADD has been worse. He keeps getting very single-minded. He's been more impulsive, which means I have to put the brakes on more often and keep him from buying when he's in these modes. It's just a lot to handle.


Also, it has meant that he latches on to ideas and won't let go -- until the slightest snag shows up. Then he's ready to quit. The snag, of course, has to be something he discovers. My comments don't penetrate. So, he went off half-cocked about medical coding; a month later he's finally finding some logistical problems. Like, he hadn't realized that he'd have to take anatomy courses to do medical coding.


It's all a tad maddening; but I am trying to restrain my temper and be supportive. I remember how painful it was when I first stopped working. It's hard on the ego.


If you think about everything that is tied into careers: We ask little kids what they want to be when they grow up; one of the first questions people ask is what you do (not even for a living, just what you do); we ascribe certain traits to certain fields of work and certain income levels.


So anyway, I've been trying to learn to be the patient, good wife. Especially because in the past I've certainly not been patient. But it really does take a toll, doesn't it?


We had a couple long talks today and I think we've reached a point where he's going to try to be more conscious of his impulsivity.


And we're going to wait to hear from the vocational rehab center before we do any more planning. Those people can help him find a career he can do. And frankly, all our attempts just end in exhaustion, depression and general malaise.


Still, it's all very frustrating. I get up, do some of my work, take a break for breakfast, then go back. Suddenly, it's the middle of the afternoon -- even though the work is only supposed to take about 2 hours it actually takes 3-4 -- and I've only done a bit on my own blog. No errands have been done and we still have to figure out dinner.


And so I found myself bleary-eyed and at the grocery store. I didn't want to take another step. Not even to go sit down. I just wanted my bed to magically appear and cushion me. But I couldn't. Because we didn't have salsa. Or a magical, teleporting bed.


It's so exhausting trying to act like a normal person. I've even scaled my expectations way back. But there's still things I don't get around to. Lately it feels like I blink and the day is mostly over, along with my energy.


Most of the time, I let this roll off my back. I remind myself that I can't change it. But once in awhile, it just hits me, how relentless this is all is. It's not going to stop.


I know this sounds silly, but I'm still a little shocked that it's been a decade of this and I'm still so far from acceptance. More silly: I sort of half expected I'd get a break at such a big milestone.


I know it's illogical, ridiculous even. I knew it wouldn't really happen. But it still seemed so plausible. I keep thinking that if only disability were a relay race, I could handle it. If I knew that I only had to go to a certain point, I could make it there.


But there's no end in sight. No one will come up and take the fatigue for a few years.


If they did, I would come back. Not gladly, but I would. If only I could have a few years of good, old-fashioned wage earning. If I could actually affect my financial future. Then I would come back for another long haul.


I think the impetus of this particular mood -- or perhaps just the proverbial straw on the proverbial camel's back -- was reading an article on Friday about science. The article said a scientist has determined a way to get muscles to better stave off fatigue.


This may very well be pertinent to me. To condense what I understand of the articles on Guillain-Barre, essentially some nerves were damaged and regrew quickly, rather than properly. So they are inefficient and make the muscles have to work harder to compensate. So something like this could actually have some promise.


I felt so hopeful for a minute. Then I realized: This was still in a lab somewhere. Not even a pharmaceutical lab. Just a university.


Even assuming they could miraculously come out with a medicine from this compound in the next five years, there would still be years of getting FDA approval. So likely it will be at least a decade before anything is even available.


After that, everything has seemed a little harder.


So what does this all mean? I wish my ramblings had some deep import or conveyed an important message that everyone could take heart from.


In this case, though, I think it's just that it really sucks to be disabled.


It's funny: you don't ever really think that you expect life to be fair -- until it dumps a bunch of "unfair" all over you. Then you just bleat out the injustice of it, even if you know there's no point.


I wish I could say that I accept my limitations with a quiet, dignified serenity. But the truth is, I often come home and hide under the covers, hugging some stuffed animals, until Tim comes and talks me out. (Why do we think that covers protect us from monsters, let alone wordly affairs? It's a mystery I've never sorted out. But I do feel awfully safe huddled up.)


So I'm not the epitome of grace under pressure. I'm a depressive with energy limitations, which means double the emotionality and grumpiness. It means that I'm often quite a handful to be around.


It means that my limitations don't make me into some Lifetime movie with a happy ending of triumph over a disability. I won't win gold medals or even a local race. I will be lucky to be able to work steady part-time work.


And, sometimes, that just has to be enough. Because it's all I have. It's far from perfect. It's nothing like what I pictured as a kid. But it's a life and it's the only one I've got. So I pick it up and make do with it -- even if I don't always make the best of it.


Because I'm human.


Because I'm disabled.


Because I'm the kind of person who cries in supermarkets.

Am I people's worst nightmare?

**Giveaway alert! Read through to the end!**

Okay, so as many of you already know, I wrote a slightly controversial piece about emergency funds and it was... well... controversial.

Almost everyone disagreed with me. Some produced reasoned arguments; some had extenuating circumstances (such as self-employment). A lot of folks just kept insisting that I was leading myself down a dangerous path.

Whatever the arguments, most of the comments contained one cohesive element: I began to realize that these people’s definition of emergency is what Tim and I call our life.

A brief overview

Most of you know, but just for the record, our financial situation is as follows:

• I am on disability, earning $832/month
• My husband in on unemployment earning $1364/month
• His quasi-COBRA (the company is too small for the real thing) is $476/month
• My meds not covered by Medicare are about $100/month
• Rent is $700

I think we can safely say that our current financial situation is not exactly most people’s ideal.

In fact, I had trouble coming up with ways it could be worse. Finally, after some brainstorming, I came up with a few:

• We could have a mortgage
• We could have a car payment
• We could both be on disability
• We could have children to support

Nightmare? Really?

When you’re busy surviving your life, you don’t have a lot of time for reflection. So I was a little shocked to realize we are living out most people’s worst fears.

This comes with a weird mix of emotions. I was oddly proud, vaguely indignant, and, most of all, I was frustrated.

I always got the sense that we fear disability/unemployment because it limits our options and our income. With so much out of our control, we fear that our finances will come crashing down around our heads.

But Tim and I are surviving. We’re even chipping away at debt .

Still, people seem convinced we’ll fail.

Safety first

The thing is, I think I touched a nerve. Emergency funds allow people to believe they can actively insulate themselves from tragedy. They’re a kind of security blanket: They don’t really have magic powers, but just having them around makes you feel safer.

And there’s nothing wrong with needing to feel safe. The world has so few absolutes, we’re practically forced to manufacture some of our own. After all, if we faced the real amount of uncertainty in the world, we’d never get out of bed. (And even then, the roof might fall on us.)

So, people need to feel safe – no crime there. What worries me is when the issue of safety supersedes critical thinking. In the grip of fear, people don’t act so much as they react.

This feels familiar

Anyone who has ever been serious ill can probably tell you how it changes peoples’ mannerisms. For me, it was going out in a wheelchair. Very educational.

There are two main reactions from the public when you’re young and sick. People either can’t look at you or can’t stop looking at you. (I have yet to figure out which is worse.)

It’s pretty awful when people studiously avoid looking at you. Once I got close, people suddenly found store window displays fascinating.

Seeing me meant accepting that the world doesn’t play fair. And while we all know this on some level, I think it’s seen as bad taste to rub it in.

But the people who did look at me weren’t any better. They stared and stared, looking so earnestly for some clue, some explanation.

If we can name something, we have some control over it. Even more, as we name and define things, we are able to distinguish between ourselves and the “other.” And when the “other” is sick, we need to differentiate ourselves just that much more.

Going the distance

And so when you find yourself talking to people about your condition (or accident, or whatever) you find them nearly desperate to praise you: you’re so strong, so brave; they could have never survived the way you did.

By making you larger than life, they can comfort themselves. You’re strong; you could handle getting sick. They couldn’t. So they’re safe.

How much choice do these people think we have? I was paralyzed and on a ventilator. It’s not like I could exactly scream, kick and bite, or lock out the physical therapist.

Moreover, I was constantly being told that mine was a temporary condition. I would get through this, they said. So I did. Mainly because I wasn’t sure what else there was to do.

Stop the world, I want to get off

So all those people who think they couldn’t handle what I handled… I have some bad news. You don’t really have a choice.

Whether you’re laid up in a hospital bed or getting a pink slip, you don’t get a lot of say in life’s major moments. The universe doesn’t bend itself to your needs – even when you think your world is breaking apart, it’ll be going on its merry way. It’ll probably even whistle a jaunty tune.

I understand that it’s hard to think clearly when you feel helpless. But, sometimes, that’s just what you are. You can throw a fit or whimper in a corner. You’ll probably give in before the universe does.

When you get right down to it, you can only have a breakdown for so long. Scream and cry, if you want. Throw things, wail, and gnash your teeth. Be my guest. Eventually you’ll be tired, dehydrated and hoarse.

• So you get up for a glass of water, and you notice the dishes are still in the sink. You're pretty sure that's penicillin growing on them.

• The papers are piling up outside your door. Neighborhood children have built (multi-level) forts out of them.

• The cat's litter box is starting to offend neighboring countries.

I’m not saying you jump right back into life. It’s much slower a process than that.

But, while you sip that water, you realize that no one is going to fix this for you. So it’s either death by dust-bunny inhalation or rolling up your sleeves and tackling those dishes.

A lesson?

So, okay, people often don’t operate well when they base their actions on fear. So maybe we all need to take a closer look at just what we’re so afraid of.

I was terrified of Tim becoming unemployed. But as his health made him miss more and more days of work, I was constantly tense. I was just waiting for the inevitable. And I constantly wondered how we would be able to pay bills.

So when it finally happened, I was actually kind of relieved. When we found out he could get unemployment, we realized we’d be okay.

All that time and energy I’d spent on fear had been wasted on pointless speculation. It didn't help me prepare. It just frittered away my already-limited energy. Not the smartest choice.

So ask yourself: How much is your fear shaping your strategies, in life and in finance?

GIVEAWAY!!!

In this spirit, I’m giving away a hardback copy of Dale Carnegie’s book How to Stop Worrying and Start Living. This book, which has been in my library for awhile, has an interesting approach to stress and fear.

So, here's how to enter:

1. Refer a friend to the site. I’ll need them to leave a comment, including who referred them. (This gets your blog a mention, too, don’t forget. So it’s win-win.)
2. Or you can save this story/blog on any social bookmarking site. Just leave me a note.
3. Link to this story or blog on your own site.
4. If you haven't already, go ahead and subscribe to this blog and let me know.
   

Multiple entries are possible, so do more than one or refer more than one person.

Some late-night ramblings on disability and perception

It is ridiculously late as I write this, so please pardon the slight rambling-nature of this post.


But I needed to work some things out.


It has been in the 90s for the past three days. Tomorrow doesn't look much better. And, being in Seattle, we have no air conditioning. So after a day being stuck inside a stuffy apartment (despite fans blasting) Tim was miserable. I took pity on him and we ran out to see Pineapple Express at the theater four blocks away. (Hooray free movie coupons!)


So, the movie was not exactly Oscar material but it was exactly what we've all come to expect from Judd Apatow/Seth Rogan. While I know I ought to expect a tad more, there are times when I find some comfort in knowing exactly what I'm about to get.


I honestly never thought I would say something so bland -- I was raised to be rather critical of films. Tim has mellowed me out a tad.


Blandness aside...


Whenever we go to this theater, I get angry. Not the theater itself but the patrons.


There are two restrooms on the bottom floor, which are clearly marked as reserved for disabled patrons. The other restrooms are up a whooole flight of stairs. Maybe 20 or so total.


I think you see where this is going


I mean, it's bad enough that people use it on their way out. (Yeah, sure, I doubt someone on the way out of the theater will just happen to be a disabled person who really needs the restroom immediately. But it is just a sore point with me.)


But I often see people ducking in before their movies. Able-bodied people. And I just want to go up to them and say something.


I want them to feel bad about using a resource that is there to help people who can't climb the friggin stairs!



Are things always what they seem?


And it's at this point that I always catch myself. Because, really, I look okay most of the time. So if I were seen using that restroom, someone might assume I was a lazy person. (I try to use the upper level. But there are days when it's all I can do to be out of the house and at the movies. Stairs are out of the question.)


So what if I'm misjudging people who have legitimate, invisible disabilities?


Yet... Disabilities tend to betray themselves, however slightly. When my fatigue acts up, my feet don't pick up as well. I tend to shuffle. Sometimes my legs visibly shake.


These are slight things, but noticeable to anyone who has been through a bodily trauma. You see slight limps, areas of the body that get nursed or otherwise used less. Thanks to a rigorous physical therapist, I even notice pronation (whether someone is rolling a foot outside to inside rather than straight heel-toe).


The signs of illness -- past or present -- tend to glimmer to anyone who knows where to look.



Still, I could simply be assuming that everyone is like me


One time, I did confront a woman about use of the restroom. As I emerged, I remarked to her that this was for people with disabilities. She was very indignant and I beat a retreat. I apologized and said I sometimes forget that, like mine, some disabilities are invisible. She haughtily agreed and basically told me to mind my own business/asked who I thought I was.


And why did I think she was fine?


Because, waiting for my turn for the lower level restroom, I heard an exchange between her and a companion. Noting the line, the companion said there were more restrooms upstairs. The woman replied, "No, I don't want to go up there."


To this day, I remain convinced that no one with a legitimate disability would say "want."


Those who can't make it upstairs -- because of exhaustion or muscular problems or something else entirely -- use words like "can't." The word "want" is bandied around by people who have options.


And yet...



A matter of words?


I still get people underestimating my limitations because I use the word "tired" instead of "exhausted."


But, when you're pretty much always worn out, you don't tend to bother with distinctions. Tired, exhausted, worn out, fatigued, enervated. Whatever.


When you're tired all the time, distinction seems pointless. Your best days are akin to most people's bad ones. So why make a fuss about the degree?


That's not to say there aren't differentiations. There's a whole spectrum of nuances to fatigue that I don't think I ever fully appreciated before getting sick. (Well, I don't appreciate them now, but I see them more clearly.)


But if you meet someone who only knows black, white and maybe a few grays... How do you describe "amber" or "sapphire" or "teal"? Would you even bother trying?



Words or abilities


So, maybe I don't make thorough enough of distinctions. That's an exercise in vocabulary. If I say "I'm tired" instead of "I'm exhausted," the meaning remains: My body has called a time-out.


But, if you are physically unable to get up the stairs, you don't say "want." You say "can't" or "I don't think I'm up to it." You say, "Not an option." You say any one of a million things, but each one will always convey your lack of control over the situation.


The fact is that, even if I was wrong about that one woman -- and I'm still not certain that's the case -- usually the cynic in me is right.


Most of the people who wander into these lower-level bathrooms are too lazy to walk up 20 stairs. Because they have no idea what it's like to have to use the "handicapped" stall.



An ode to a bathroom stall


I sometimes wonder if anyone ever stops to consider just how much I avoid these larger stalls and special restrooms. (The answer, of course, is no. At least, I truly hope that the people in my life -- or who has ever even read the title of my blog -- has better things to do with their time than wonder about my proclivity toward regular-sized bathroom stalls.)


As a kid, I used to love those things. They were huge. And had awesome bars by the toilet. I think all kids find that kind of stuff fascinating.


My mom eventually impressed upon me that I should avoid such stalls, in case I take it from someone who actually needed it. But still I always loved it when all the other stalls were full and I wound up using the big one.



Then I needed one


At age 19, I found myself having to learn how to hold objects. How to write. How to walk. I had to build up all the muscles that had atrophied into disinterest in my three months of non-movement.


And during all that, I had to use a wheelchair to get around. That meant that bathroom time was a special kind of torture.


Even with a nurse and the helper bars, you're still hard-pressed to get yourself onto a toilet. And, by the time they actually get you out of bed, into the wheelchair, down the hall, into the bathroom, lock the door... Well, you're doing it on a pretty full bladder.


I remember being so bewildered at how I had ever thought the bars were "cool."


After that, I hated them with the kind of revulsion that comes only from dependence.


Even now, I can't ever look at one without remembering the pain and weakness in my limbs, how pointless it felt, fumbling to get out of the chair when I knew I couldn't hold myself up.


I can still feel the strong assurance of the nurse's arms. She held you in a rough way that came close to hurting. But she was the vital bridge between the chair and the toilet.


So even though you wanted to scream at her (nurses are always so nice and upbeat about the worst things), even though you wanted to go back to the time when the major hassle in life was finding a stall with toilet paper, a clean bowl and no drips on the seat... Even though all that is running through your mind, you don't begrudge her anything as she bruises your armpits lifting you up with her firm hands.


Because she is the only thing, besides sheer determination, that is keeping you from peeing in your wheelchair.



Spin a mile in their wheels....


It was a short stay in the wheelchair -- probably just two or three weeks. (Due to stress and a lot of various medications, my overall memory of that time is inexact.)


But even after I had graduated to crutches, and then to unassisted strides, I never again felt like like a normal, walking person.


I was always acutely aware that I had been in a wheelchair.



Back to the beginning


And so when I see these people choosing their convenience over others' needs -- over my potential needs -- I rage inside.


But what do I do about it?


Do I confront them, and risk being wrong? Will it really do any good? Especially from someone who looks able-bodied?


I still haven't figured this out. All I know is that, as I join blog directories and end up describing why I started this blog, I become acutely aware that this all ties together somehow.



Us vs them


I started this blog because I was tired (there's that word again) of all these great frugal ideas that I couldn't use.


And, yes, in my more bitter moments there are times when I wish I had the luxury of paying down debt with even one full-time salary, let alone two. (Eventually, I go back to a fairer state of mind. I realize that frugality and debt reduction are never easy -- regardless of circumstance. And that there are a number of people whose circumstances are tougher than mine, who'd view my life as riddled with luxuries.)


I started this blog because I realized that if I couldn't do a lot of this stuff, how did other disabled people -- who are likely to have low incomes and high bills, who are therefore likely to be in debt -- how did these people cope?


But did it stop at disabilities? Does everyone else have it peachy-keen?


What about the people who had a job or two and kids? How much of this stuff can they do?


And this is when I realize that my fatigue is not unique. It is simply exacerbated. It is a worse form of a bad symptom most of us have.


We all have limitations and all have to learn to prioritize and do what we can -- and then learn not to beat ourselves up about the rest.


But that's still no excuse for using a disabled restroom.