Wednesday, August 26, 2009

Visualize Clear Vision

We need a car and a place to live, my kids and I, and preferably not a car that's a place to live.

My magical mathematical friend, Bette, reminded me to visualize. She suggested I blog my vision, putting it out there to see if the right thing comes in response.

My problem is, I can't see clearly what it is we need.

Maybe we actually should nest two birds on one twig, as the kids' Daddyman nonviolently resets the metaphor. Maybe we should have a vehicle to live in. A good sized motorhome, with low gas mileage, could get us by until things improve.

Except that we are too ill to drive from campsite to campsite as we reach the limit in each. We are too ill to travel and actually enjoy a nomadic life. Besides, who knows when or even if our health and finances will improve?

A car and a home, then.

The car isn't too tough a vision. Low gas mileage, roomy for kids 6' tall and up, with a roof rack to transport a bike or kayak for the kid who is still well enough to peddle and paddle. In reasonably good shape, with okay tires and no major repairs expected any time soon. A stereo would be nice. AC optional. Must be automatic transmission because of my bad knee. Something decent, I'm wishing for: not rusty and ready to fall apart.

Our needs for living space are harder to define. With two teens, it would be good to have 3 bedrooms, but we could squeeze into two. With four cats and two dogs it would be best to have a house, not an apartment. But how can I make any stipulations beyond a prayer that the cockroaches not be piled above knee-high, with only $300 to budget for rent?

It's a ridiculous amount to offer anybody, but it's nearly half of my current income. Subsidized housing (site-specific section 8, for those with a handle on the jargon) would charge me one third of my monthly income. We'll need something left over to pay minimal bills and buy food and clothing.

How can I visualize an ideal situation, within such narrow restrictions? I know that I need to try, but so many variables just confuse me. In the country? That's good for our health. We get more ill if exposed to lots of noise and bad air. In the city? That's good for convenient access to doctors and shopping. Ride a country bus and carry heavy groceries up a country hill and you can find yourself idealizing a convenient life near a mall.

Can we be close to some of our old friends or new friends? Do we have to move to somewhere completely unfamiliar? What if we have to leave the state?

There's what we like, what we prefer, what we need, what makes sense, and they're not always the same.

Once we get a place, I'll confront the question of how to actually move there with no energy and no money, with nothing but aches and hopes. But the where is first. The how will have to wait.

I'll try again to do some visualizing when I'm a little less stressed. For now, I'm trying not to panic. I'm visualizing visualizing.

Friday, August 21, 2009

You Don't Look Sick

No, I don't look sick.

When you see me, I don't look so bad. So is anything really the matter with me?

First of all, "when you see me," is an important qualification. You only see me when I am able to get out.

The three out of four days, roughly, when I'm too ill to go out, you won't be seeing me. I probably won't get out of my pajamas some of those days, might not take a bath, might not get out of bed on the worst days. So many days I plan a two-mile bus trip to get groceries, only to have to put it off, too sick to do the walking, riding, carrying, and even the small amount of thinking and planning involved in a grocery run.

Second, even when you do see me, I'm not feeling as well as I look.

How well do I look? If you knew me before I got sick you might notice the lack of spring in my step, the absence of my usual bouyancy, and the stress of pain overlaying the former looks of humor and caring in my eyes.

If you don't know me so well or look so closely the pain might not be at all visible, but it's there, just like your pain is there when you have the flu.

Remember the last time you woke up horribly sick, on a day when you had something important to do? You probably got up anyway, ate, took a shower, got dressed, brushed teeth, hoping all the while that you would feel better once you were ready.

If you were really sick, you had to admit defeat, cancel your plans and collapse in bed, one huge ache.

What if you woke feeling that way every single day?

What if this continued for over two years?

That's where I am right now. I can't stay in bed every day. I have to go on taking care of bills and cooking, laundry and shopping, doing what school things I can with my kids, finding a way to clothe and house and feed us all. Nobody is taking care of any of that for me.

When you see me, I'm making a huge effort to be up on my feet and out in the world. Every minute, I'm wanting to go home and lie down. No matter what medicine I try, my head is aching, my whole body aches as if I have the flu, and sharp pain presses my chest. My mind is slowed down too, just like when you're so sick with flu you can't think clearly.

I don't look sick, but I can't do my left-brained writing work anymore. I kept trying until I reached the point where it was a huge effort to squeeze out four hours per week and I had to choke back pride and tears as I told my last client I couldn't take on another job.

I don't look sick, but when I have had to do some manual labor---just carrying moving boxes, or whacking weeds, or even toting those grocery bags up the hill from the bus stop---I stop in the middle often, wincing in pain, I push on through and do what has to be done, and I pay for it with several days of mind-numbing pain and exhaustion.

On those days, those ones where you don't see me, I hit moments when all I can do is cry.

Tuesday, August 18, 2009

Alas in Wonderland

There have been a lot of surreal moments in this little journey, but few as strange as today.

True, it was very strange that back when my home was foreclosed, despite my being in constant phone and mail contact with Queen of Hearts Mortgage, the Queen sent a messenger to my door with a thin slip of paper. It looked scissored from a xeroxed sheet. Maybe fifty two such slips could be made from one standard piece of copy paper. On it were the Queen of Hearts Mortgage Company's phone number and a command that I contact the Queen immediately. Curious, as I was already in contact with her, but it was curiouser that the phone number printed there was incorrect. Curiouser and curiouser, they did this not once but twice. A messenger again drove for at least an hour to reach me, handed me the thin scrap, and again the number was wrong.

That was weird, yes, but maybe it was a weirder shade of surreal to drive for six miles behind the White Knight, honking my fool horn off, trying to let him know that the moving truck he was driving had its rear roll-up door wide open. It was already clear that Queen of Hearts Mortgage, which lost its head not long afterward, was gardening with painted flowers. But I had credited the White Knight with at least the presence of mind to pull over when a following driver honked for ten minutes while flashing their headlights.

Then again, I should cut a lot of slack for the poor White Knight, who after all had spent a couple of grueling days helping with the packing of the cluttered three-bedroom house we once shared, and had slept there on the floor while I went home to our two kids. We three had already moved into the house-sitting gig where the three of us still sit, looking for another house. I'll hand it to the White Knight, he knocked himself out---well, yeah, clearly he had knocked himself silly---taking time away from his own homeless and underemployed shambles to help pack and move our former mutual shambles. He had more excuse for an absence of mind than had the comfortably overemployed Queen of Hearts.

Less clear was the reason for the lack of clarity in the Mock Turtle, a psychologist I saw for one session, and the Gryphon, her office manager who had let me see the Mock Turtle before realizing my insurance didn't cover her help.

The Mock Turtle told me that what I needed was to practice Mindfulness. She knew some books which would help. I explained that while I can still write sometimes, a little, reading was really hard for me.

Perhaps the Mock Turtle's mind was too full of her own sorrows to hear mine? She sent me off with a xeroxed copy of a complete book on Mindfulness. Also, she asked for my snail mail address so as to recommend another book, as email was to her as slippery as a lobster in a quadrille.

A few days later I got some mail from the Mock Turtle. The envelope was stuffed tight as a whiting with a sheaf of 19 sheets of paper, with a yellow sticky on top. The sticky told me the title and author of this other recommendation, plus expressions of pleasure to have met me etc. That was really all the Mock Turtle needed to send, had I been in any shape to read a book. But the top five pages of the sheaf turned out to be the first five of eleven pages on Amazon related to the book. She had printed it all out for me. I have the title and ISBN number, editorial reviews and product details, all right here at my fingertips and nearly as convenient as the internet. That's okay, I can deal with a paperful system. But what were the additional 14 sheets? Blank paper.

I was not devastated when The Gryphon discovered that based on my insurance plan I couldn't be seen by the Mock Turtle after all. I felt I could learn my mindfulness from someone whose mind was not quite so full. I accepted the kind wishes along with her gift of 20 pieces of paper and 90 cents postage, and I moved on, to see what else Wonderland might have to offer in the way of astonishing people.

At Wonderland Affordable Housing they told me that they no longer do housing. "Why are we still listed in the pamphlet you were given?" they asked in astonishment. I couldn't answer. They referred me on to Looking Glass Housing.

When I phoned them, however, Looking Glass asked, "Why did Wonderland send you to us? They know we've never done housing. But call White Rabbit Homeless Services and they will help you."

The White Rabbit did her best to help, going through all her listings. "Have you dropped in on Wonderland? Yes? Well, then, you might look into Looking Glass."

I told her again to whom I had already spoken, and reiterated my situation in brief: no home, nearly no income, two children, and myself and one of the children disabled, with no car to live in.

"Tut tut, that is a shame," the White Rabbit fussed. "Well you know, you do have somewhere to stay, for now, that's the trouble. It's much harder to get help unless you're already on the street. If you stay in a campsite for a few months, you'll probably get something."

Yes, she told me that my sick self and sick child and well child should all three pack up our nonexistent car and go camping. There are affordable housing complexes. I can see the garden, but I can't get into the garden.

Still, all of these Cheshires mean well. Their paws point Here and There at once, but those smiles, unfading and bizarrely broad, are nevertheless sincere. Consider the kind people who I contacted when I needed to find something labeled Eat Me.

When at my wits end to get groceries up the hill without a car and still find energy to cook the damn things, I phoned Hatters and Hares For the Hungry. They told me that yes, they did indeed deliver nutritious meals to the chronically ill. Was I dying? No? Ah, too bad. They could only deliver nutritious meals to people who were actually dying.

This condition, Myalgic Encephalomyelitis, requires adjustment to a new reality. Today I have moved on from that particular problem with a resolution that I will not overtax my energy by expecting to shop, cook and eat all in one day. Monday is laundry, Tuesday is shopping, Wednesday is cooking and Thursday is eating. On Friday I feed the pets, on Saturday I sweep, and on Sunday I take out the garbage. All very reasonable. A mindful adjustment to my new reality.

Today however, I found myself back in Wonderland.

I have applied to the Red King for Disability Benefits. These Flamingo Benefits for Disability, from the Red King will, if awarded, exactly cancel out the Hedgehog Benefits for Poverty which I am already paid by the White Queen, so I will if approved by the Red King have a net gain of one square forward, one square back.

Today, the Red King sent me for a psychological assessment with a Ms. Dumpty.
The Red King spent over $150 on the taxicab alone, to get me there, plus whatever he pays Humpty Dumpty. The goal, it seems, was to find out if I am aware of very general reality and can follow extremely simple instructions.

The first part of the test consisted of questions like, "What floor of the building are we on?" I could not resist a glance toward the window as I answered that it was a one-storey building. Ms. Dumpty made note and asked, "Who is President?"

The second half required me to respond to such commands as, "Write a sentence," and, "Fold the paper in half and put it in your lap." I did these things.

I could probably tell you who the president was and draw two linked pentagons even if I had eaten from the wrong side of the mushroom. If this is all that is required to be found capable of gainful employment, and such trifles as my pain and exhaustion don't matter, then I'm afraid my application for Flamingo Benefits for the Disabled will be denied. Perhaps, however, other measures of my fitness will be taken into consideration. If I am left sitting on the wall for much longer, I will surely crack.

Probably the most revealing portion of today's exam was my blood pressure test, solidly grounded in the digital readout of a sphygmomanometer from this side of the looking glass. My blood pressure was something like 96 over 63. I probably need more pepper.

The nurse thought that couldn't be right so she spoke severely, beat me a bit, poured pepper everywhere, and retook my blood pressure. It was lower still: around 93 over 61. She peered at me. "Can the poor thing be alive?"

This unusually low blood pressure is quite probably related to Myalgic Encephalomyelitis, as it's described in the Canadian definition. I've always had fairly low blood pressure but this seems ridiculous. Couldn't we arrange for a tilt table test? And wouldn't this make it fairly clear that what we're dealing with, though it does have the psychological impacts of any chronic and debilitating illness, is a clearly defined physical disability?

Maybe this will all make more sense to me, when I become a Queen, or a pig.

Friday, August 14, 2009

Reliable Transportation

If you expect to be disabled by chronic illness, particularly if you have a dependent who will be similarly disabled, plan to maintain reliable transportation. I cannot overstress the importance of this.

A couple of years before we got myalgic encephalomyelitis, I bought a lovely Subaru Forester. Its convenient size for the family, fuel economy and good handling on the winding and sometimes slippery backroads in our rural area all made it a great choice. It was used but in excellent condition and still under warranty. I made the monthly payments on this practical vehicle, kept up its scheduled maintenance, kept it equipped with good tires, and kept registration and insurance current and, against the arising of some unforeseen problem, I paid auto club dues so towing would be a simple and relatively carefree arrangement. In short, I was a perfectly responsible vehicle owner.

When I got sick, inability to work and earn conspired with the overwhelming onslaught of related troubles and all together they made it gradually and at first imperceptibly harder to remain so perfectly responsible. Late payments, delayed maintenance, delinquent registration renewal fees all shuffled in with the paperwork problem pile, to be caught as caught could when each day I made valiant attempts to meet normal and additional responsibilities through the ever-present cloud of pain and exhaustion.

By the time the upkeep of that car was clearly too much for me, I was too sick and overwhelmed to know what to do about it. I tried asking family members, friends, and financial advice professionals associated with charitable agencies. I explained my problem to the bank that held my car loan. Should I sell the car? Could someone take over payments? Should I trade it in? In my illness, when clear thought on what to make for lunch can sometimes overwhelm me, these questions were an enormous challenge. Before I could muddle through to an answer, my car was repossessed.

All I knew was that I needed a car. The hour’s drive to the clinic where we had our regular medical appointments, the far-flung and inconveniently located psychologists and dentists with whom I was supposed to arrange additional health care, even the five minutes’ run to town for groceries all made it necessary to keep a private vehicle. Life in a larger town, along major public transportation routes, would have been different. I keep that in mind as I search for the affordable housing that isn’t available.

(Of course, in a city my insomniac but otherwise well child couldn’t take the night time walks that help her battle her migraines and sleeplessness, so back to wanting a rural home and a reliable car. The benefits of clean air and a caring community increase the wish to remain here, not that beggars are allowed to choose. I’d accept any place we could call our own, anywhere.)

In any case, for now I’m here, and here I face the challenge of hauling a bedridden child to his feet and dragging him through a grueling six hours round trip on jouncing, rumbling buses with his ever present pain—and I mean jouncing, hitting every pothole hard—to make it to one appointment being required of us by the Social Security Administration in order to determine whether we are, in fact, disabled.

There is a solution in the works, thanks to my sister who will help me buy a car, and thanks to St. Vincent de Paul’s Society which sells inexpensive but reliable cars. However, this solution is still some weeks away, it seems. Meanwhile, I get the groceries by bus. The last time, carrying grocery bags up the hill from the bus stop wiped me and my daughter out so badly that even she who I repeat does not have ME was sick for two days afterwards and I went to bed that night in tears, the pain about as bad as it ever has been. I need to go grocery shopping again today and maybe the reason I'm writing this is to help me work up the nerve to phone and beg someone for a ride. I wait to make dental and mental appointments, and pray that the planned car-buying will happen soon enough to get me and my sick kid to our next appointments that can’t be put off.

So you see, it is simply impractical and the extreme of bad planning to be chronically ill, in poverty and carless in a rural area. I do hope all of you will take my advice and plan your lives—or the loss of the lives you knew—with better care.