On Moving Again
This evening, walking along the long field
My eye was drawn to a living shimmer in the sky:
Three aspens alone alive in a world of almost motionless
Cottonwood and willow and Chinese elm trees.
The breeze that barely stirred the others
Sprang it free, spangling leaves like light on water,
An electric flutter, the secret energy
In the heart of the world revealed. So free.
An aspen leaf might believe itself inordinately busy
(especially comparatively) and certain therefore
It will expire prematurely, useless, stupid, failed.
From where I stood, it was the most beautiful thing to see.
My life could be similarly pleasing to God.
I guess this could be service enough for me.
From Her Faithfulness by Liz Waldner.
Miami University Press 2016.
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[Thank you for your kind donations to Poet, Liz Waldner | Medical Fund.]
I begin in a time-honored tradition: friends have urged me to revisit/reinstate my (yech) blog, so although the word for it is repugnant to me (I call it ‘bog’), me voila. Please bear in mind I have only an hour or two a day out of bed/functional, so intermittent are us.
I am ill enough to be mindful daily of the fact that I might not get around to telling my stories in another way, nor to have the ability to tell them here, either. Hence, “On Moving Again.” Hence, info here rather than poem:
Like all of us, I am dying of being alive. However, I am dying in particular of poverty, of homelessness, of the growing problems in our health care system esp. relating to the pricing of drugs, and of chronic diseases I might have managed better with had I not had those particular challenges.
None of the doctors I’ve seen over the last ten years mentioned that, although little testing has been done on my genotype, being rare in the US, anecdotally it seems one can limp along like all Hep C patients, tracing a roller-coaster on a gradual decline–but then, 25 or 30 years in, for some reason, there’s a tailspin and you crash. That’s what’s happened to me, my doctor guessed in March.
It’s a doctor I’ve only seen once and had to travel further than I can drive to get to. Continuity of care impossible when rootless.
For a dozen years, good medical centers had declined to treat me, saying my health picture precluded the drugs available and my disease was mild enough I could afford to wait for the new class of drugs expected in ten years or so.
That time is now.
However:
Unless you are a renter on an income below poverty-level, you may be unaware that since the housing melt-down, many who lost their homes have become renters, by necessity or prudence, and many “millennials” who might have become home-owners previously lack the savings or credit to buy: it’s difficult to rent and more so to find an affordable rental.
My Social Security disability check is about a thousand a month and about $150 of that has gone to my Medicare plan. Another $150, on average, goes to medical care co-pays, co-insurance, deductibles. Like many, I forgo treatment that would help because I cannot afford it. Medicare is much more expensive than ‘Obama-care’ which I can’t get, being Medicare-eligible: I’d have neither of those expenses.
So I’d be at least $300 richer a month. That’s an important $300 at this income level, since it leaves me $700/month to live on for rent, food, medical, dental, rx, transportation, utilities, phone, internet. Clearly, I have to forgo some things on that list. Discipline, y’all. Necessity. (Cf swimming pools, movie stars…)
I have the same basic need for shelter as anyone else. I am resourceful, independent, frugal—and poor. So I was happy be able to apply to ‘affordable senior housing” for the 55+. Until I discovered affordable meant roughly 650-950 month, across the country, and my low income disqualified me. HUD housing, with 33% of your income as your rent, is mostly closed–can’t even get on the very long wait lists–a predicament I had cleverly addressed (in the words of several of the affordable housing places where I’ve been on wait-lists for five and six years) by becoming a professional house-sitter.
What I hadn’t foreseen was not only that owners might return 3 weeks early without warning in a place I knew no one, or that I’d arrive to find no bed or filth or unexpected animals or members of owners’ families but that eventually I would, in effect, know no one anywhere. If you move enough, becoming ever sicker and less mobile as a result, sooner or later you lose touch with people. It is very hard to explain to someone who last saw you when you were well that you have entered a kingdom invisible to them where it is now impossible for you to cross the border after noon on any day and where, on some days, after nights of no sleep, you may not cross at all.
Since it’s the web of connections that best finds for you places to live, jobs, love, and, especially in difficult markets (like the west coast, which I used to call home), a place to live, after some years of living at large, moving every 2,3, 6 months all over the country, nowhere was home. It is nearly impossible to find a decent place ‘cold,’ via Craigslist (though it is good for sublets, the next thing I turned to).
And so, in the game of musical chairs/abodes, I had nowhere to go when I was felled by Rocky Mountain Spotted Fever en route to a housesit, catalyst for a series of debilitations, including a C. difficile infection (acquired in the ER while being seen for RMSF–I guess; the Dr. had to look stuff up online and left it up to me whether to take a liver-damaging antibiotic), a thing I’d never heard of in 2008. Bye now, 20 lbs of me. (Another thing not thought of: an HMO limits one to ER care out of area–and may be that’s crucial: in that C. diff infested hospital with its ‘wash your hands’ signs everywhere, no one did.)
Further episodes of Life As A Sitter Of Houses And In Unavailable Chairs may be found in my two most recent books, Her Faithfulness, Miami U. Press, and Little House, Big House (Now How I Am An American), Noemi Press, both 2016.
Where now shall I go?
Etc.
What, to return to the place I began, I want you to know is that I have excellent rental and housesit references but my income is ‘too low’ so most companies and some private owners refuse even to show an apartment. It matters not that you can show you’ve paid the identical amount or more without fail for years, albeit 80% of your income; it matters not that you can pay 6 months up front (it was not utterly pointless to have saved for a downpayment).
And so, having become too ill to drive long distances to unknown house-sits (or sublets: arrive to find mold over three rooms floor to ceiling (assured this compromised immune system would not find mold, never has been mold), broken sump pumps, missing air-conditioning, no toilet seat, no heat, bales of animal fur) to continually stress over where to go when this 3 or 8 week stretch of housing ends, I decided to use the last of my savings to buy a trailer in a retirement community in Florida.
However. I’d developed severe heat intolerance after my tick-borne illness and subsequent C diff: faint and puke at 80 degrees, no margin, with bizarre heart arrythmias, a word I cannot ever spell. Since I’d headed to the Northwest to housesit after this event, I didn’t know till I got South that FL would not be a good place to call home 8 months of the year, climate-wise. No big trees for shade means mighty hot cars means have to live like a nocturnal creature–except I’m in bed by 2 pm.
Because I get 2-3 hours of sleep a night at best, noisy motels are not my friend, and since I could only go a hundred or so miles a day, life included lots of overnights, so I’d gotten a small pull-behind camper for a…and ended up living in it.
Campland! Where I found a hidden world of solo women in their 60’s and 70’s living in campers—and in a couple instances, in tents. Casitas and Scamps greatly favored. Geranium on the picnic table. Usually a dog. Or two.
an army corps park campground, fl/ga border. the elderly ‘hosts’ did not mention the infestation with ants; curious about strange comet cleanser colored outlines left on the camp pad but never guessed. (used as deterrent wherever camper met pavement) 4 am next morning, felt crawling… thousands of ants, sheets, curtains, hordes of ants. had to haul everything out of camper. behold, worldly possessions in camper land. (though fishing poles not mine)
urban county fair campground with faithful dumpster rescue chair
I, too, learned that Army Corps and a select few Forest Service campgrounds are the best: clean bathrooms, by and large (although best not be squeamish about insect-life); hosts on site (being raped/robbed a constant concern in those without real walls and doors); usually beautifully kept and scenic surroundings—and often, wonder of wonders, at Corps parks, both electric and water at your campsite. If you are 62+ or disabled, discount!
Unfortunately, you have to move every 2 weeks. And campgrounds fill up on holidays and weekends—who knew everyone camped on Easter? Who knew RVs now come with tv’s on the outside, as well? And I had no Internet, nor reservations…and discovered I have no tolerance for campfire smoke: 72-hour migraine anyone? So 2 nights here then hunt for the next ‘there:’ not what I had in mind.
And then I got too sick to do that. I’d been physically strong and resourceful for almost all my life, and self-sufficient/reliant, to boot, so continually over-estimated what I could cope with. And ended up unable to drive more than an hour without getting too dizzy and nauseous to proceed.
A dear friend has been my driver. Driving Miss Lizzy.
I find telling facts taxing and hope you will bear with me even if you are feeling bogged down, too, because here’s a big one:
access to the drugs I need to get well has been rationed because the cost is astronomical. Other countries treat everyone who needs it; other countries negotiate with Big Pharma and have reduced this cost by up to 99%. If I was not Medicare-eligible, I’d receive a $5 coupon/co-pay for the RX portion (or could pay nothing, as mentioned above.) The Pharma lobby has prevented the government from requiring that Medicare and Medicaid negotiate prices.
Few doctors are willing to see Medicaid/Medicare patients. They close their practices at 10 percent of these; in some areas, I had a 7 month wait for a primary care doctor (who prescribed ginger tea and refused to order any labs for what proved to be serious electrolyte imbalance, autonomic neurpoathy, and a cardiac condition down to a genetic defect)– without whose referrals (not forthcoming) I could not see the specialists I clearly needed.
My own insurance co., under investigation by the NY state attorney general’s office like all the rest, has been the most punitive in the state, denying authorization for treatment until sufferers have sustained such unnecessary damage that they have a foot in the grave that they are unlikely to get out even after treatment. (this from a doctor, then verified by me via the company’s pre-authorization form.)
(UPDATE: see link in article published May 5 on AlterNet.org: “How I Got the $84,000 Hepatitis C Drug For $1500 By Buying It From India.” NY state commercial insurance companies now required to follow new guidelines/not automatically reject 30-70% of HCV drug requests. List of those reaching an agreement with the state; mine not on it; does not affect government-funded plans, alas. Good luck getting treated if you are on Medicaid—even worse than Medicare.)
Which is to say: our share-holder and lobby-driven society/economy punishes patients for profit. (For years, though I asked, no one would test me for Hep C—I didn’t fit the profile (and the PCR test was expensive): I was not in prison, I was white, I had no drug habit. And I wouldn’t have known to ask if I hadn’t met at an artist residency (o if i cd live there now) a composer from Vienna who suggested it…thank you!)
My Medicare plan, alone in the state, required (along with pledge not to do drugs and to commit to treatment) that one have a fibrosis score of 3, where 4 is the top and often correlates with cirrhosis. Other plans require a 2, which is bad enough. The score measures actual damage to the liver.
Fibrosis is most accurately measured by biopsy. I had 2, five years apart, standard of care. In 2006, I was ‘almost’ a 2. Progression is supposed to take about 10 years, so I’m likely a 3 now. However, a cheaper method of ‘scoring’ has appeared: Fibroscan. It’s a bevy of lab tests and an algorithm. Most insurance companies prefer it to an expensive hospital procedure, of course.
And patients like me might be happy to have it, too: my last biopsy, the dr. handed off the procedure to a colleague who handed it off to a resident (without telling me) who botched it in let me count the ways: punctured an unanesthetized part of my liver (despite ultrasound guidance), whereon I went into shock whereon she panicked and flooded me with fluids, which could have killed me (you can’t eat or drink for 12 hours prior to avoid fluids). Then, told I needed to stay 4 extra hours for observation, I was made to stand up—time to go!—an hour later and fainted. They’d confused bed numbers…
I got the Fibrosure test a couple months ago and it showed zero fibrosis—despite the fact that my liver function tests are the worst they’ve ever been. Turns out the test is notoriously inaccurate at both low and high levels of fibrosis, so much so that Aetna, one of 2 companies that the NY investigation noted for good practice in HCV drug policy, disallows it as medical evidence.
Furthermore, most companies, mine included, require you to ‘fail’ at the older, brutal treatment, which includes ribavirin with the newer drug, Sovaldi. For me, even if they approve treatment, with a low white count that might be a blood cancer which up to 30% of HCV sufferers develop and no one knows why, Ribavirin is risky since it lowers yr white count. You also shouldn’t take it with cardiac issues. But you have to try it first! But then, if you can’t tolerate it, they are not happy to pay for another go with something else obscenely expensive.
So, although I need to be treated yesterday, my doctor thought waiting for the new Gilead combo, a sort of Harvoni for everyone/the rest of us (it’s used for geno 1, the most common in the US—go where the money is!) advisable. My job is to live until treated.
Which would be easier if I lived somewhere.
Why should I be homeless? Because I am ill? Because I made too little money all my life? I worked from the time I was 16, supported myself from 17 onward—and only 3x made more than $30k a year. My average was under $20k. She’s poor and had bad luck in the family department this lifetime so let her be homeless?
Is it merit-based?
Because I am too sick to live with housemates? Because I don’t think positively? Because I don’t believe I deserve a home, having been humiliated, harmed and finally booted out of ‘mine’ as a teen-ager?
Maybe.
However, there are concrete social and economic injustices at work, and I am literally sick of people refusing to acknowledge them and their power. A person’s luck and health and class may make one immune to them. However, it is wise to be aware that there are very large numbers of our fellow citizens who are invisible in their plights and their plights touch us all, even when we aren’t aware of it, now more than ever.
I am grateful for Bright-Sided : How the Relentless Promotion of Positive Thinking Has Undermined America by Barbara Ehrenreich.
I am mindful of the story of Job.
I’d rather be writing poems but haven’t managed more than a handful in four years. (The last time I had a desk or saw my books was in 2013.) Or making the art and the video I used to. Or petting my non-existent cat I’ve wanted for 20 years (landlords almost never let you have a pet anymore). Or doing anything besides using my last ounces of myself to try to find a place to live.
I’d rather be well–and thank those of you who have contributed to the GoFundMe campaign for moving me in that direction. I am moved to tears, a kind of moving helpful (esp now when about to move again, and sleepless as a result). Thank you. Thank you.
I hope this provides information about a world you might not know and some background for the GoFundMe campaign.
Bye, now.
[Please visit Poet, Liz Waldner | Medical Fund.]
Learn more about Hep C drug pricing:
The New York Times: How Much Should Hepatitis C Treatment Cost?
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