"Safety Net"

The view from my bed on a clear day (aided by the zoom on my camera)

MAYDAY Magazine: "Safety Net"

I have been lucky. Frighteningly so.

Not health-wise, of course. But once my health deteriorated to the point that I had to access our medical system and social safety net, I managed to eventually land in the parts that still work. 

And welfare does work. Conservatives want to disappear it--we all get that. But reporting that only fixates on how welfare isn't working plays into conservative talking points that government can't help, that government is the problem. I'm a shut-in, but in a comfortable apartment because of Section 8. I have primary care that makes housecalls because of Medicaid. It also pays for the caregiver who picks up my prescriptions and does my laundry and helps me take a bath. I have enough heat in the winter and A/C in the summer because of the Low Income Home Energy Assistance Program (LIEAP). I have a fridge full of healthy food because of food stamps (SNAP). I have phone service because of the Lifeline program. And I have Supplemental Security Income (SSI) to cover the expenses that these programs do not. I have little disposable income, but thanks to government programs, my needs are met. Being sick, in pain, and mostly bedridden is awful. But it would be so much more awful without welfare. 

Chronic Illness Management Specialist

Demolition of Montgomery Hall, Portland State University, September 24, 2026. Photo from the NW Examiner.

It has always been a day of mourning. 

I'd see "Sep 25" in the upper right corner of my computer and remember that day in 2001, sitting in a small, square, fluorescently-lit office in Cramer Hall typing out my resignation letter. Remember the night before curled up on the floor of my dorm room, too weak to climb the ladder of my loft bed, feeling the familiar rawness in my throat, the limpness permeating my limbs, the sickly chill that said I was going to be too ill to teach the next day, the first day of the school year. 

Remember the shock upon hearing my therapist two weeks earlier say "it's time we talked about you going on disability," like a frigid riptide from childhood days on the Oregon coast that left me snorting, choking, and fighting against its pull. 

Remember the teary walk to the Aging and Disability Services office after handing in my resignation, more fluorescent lights, a SNAP EBT card, and then a further walk to the Social Security office. Remember standing at a window answering questions while a woman typed my answers into a computer, told me I had not worked enough to be eligible for Social Security Disability Insurance but there was the welfare program, Supplemental Security Income, that I could apply for. She handed me the 23-page application and told me it would be a minimum of 4-6 months before I would hear back. In fact, I would not get my first SSI check for 20 months---and I was lucky.

And so began my new life as a disabled welfare queen. 

Letting Go of Easter

All my talk about mysticism and writing at the end of January had me groping for my dormant liturgical traditions to see if their structures and rhythms might inform my approach to writing as spiritual practice. And since Lent was nigh, I figured I might as well start by taking a stab at observing it for the first time in many years. And since much of the mysticism of the Western Church began in the East—indeed it was the emphasis on mystery that drew me to the Byzantine tradition—I figured I might as well start by attending Divine Liturgy. Or watching it, rather. But I’m in good company. According to St. John Chrysostom, the angels, too, are mere spectators at the “celestial theater” of the Church. 

***

In 1999 I became a catechumen in the Orthodox Church, a sort of student studying to convert. It meant leaving evangelicalism and a lifetime of distinguishing myself as the AWANA champion, Miss Conservative Baptist of Oregon 1986-87, and Jesus Nerd par excellence, teaching Sunday School and leading bible studies and worship music all the way up into grad school. My family never had the money to create the hermetically-sealed environment of private or home schooling but I certainly tried to shut out as much of the storm of secularism as I could with daily personal bible devotions, youth group, and Christian music—and tried to ignore where these spiritual and intellectual tarps leaked. In graduate school, my academic speciality was American evangelicalism and the Israel-Palestine conflict, which meant spending a lot of time in the bowels of evangelical history and theology. The growing leaks finally became a flood. I could see how flimsy and tenuous the materials of not only my cognitive coverings but even those seals that were airtight, allowing the solipsism and literalism inside to fester into something noxious and idolatrous. Evangelicalism had made graven images of the individual, the text, and even the nation-state. It was also deeply unsatisfying. I wanted God to be more than just my invisible daddy or bestie. 

Midwinter Spring Is Its Own Season

Silly blueberry bush, it's January!    

It is not uncommon to have a break from the seemingly interminable Portland rain in mid to late January. After months of dim, gray-white skies, the sun feels almost aggressive, with a glare that is blindness in the afternoon even as we all luxuriate in its heart’s heat. Sometimes we even get temperatures in the upper 50s, teasing the bulbs with spring only for the most gullible daffodils—or blueberries (such as mine above)—to bloom and then die in a February cold snap. 

Between melting and freezing, my own soul’s sap is quivering with a tentative spring. Though at 53 years old I’m more in the autumnal time of life rather than winter. Still, a spring time out of time’s covenant. My pedometer may continue reading only 300-400 steps/day (especially since starting the Estradiol patch in August 2024), but I seem to be doing more with those steps. A bit more cooking in the kitchen. A bit more trimming and planting in the garden. An hour or two more out of bed here and there. 

Blogging Like It's 2004

Why, hello there. It’s been awhile. Such a long while that you’re not even here (yet?). It’s been over a decade, after all. A lot has changed on ye old Internet. 

Ah, but not Blogger. It’s still here and almost the same as it was when I started blogging in 2004. Sure, like any long-neglected place it's required a bit of cleaning up. Changing the template. Getting rid of sidebars full of dead links. Reacquainting myself with the interface (now including such luxuries as a function to view the site in both desktop and phone view). 

But, like, don’t you know all the cool kids are on Substack now (and the even cooler kids are on Ghost and beehiiv)?

Yep. I’m aware. My inbox is a daily gauntlet of newsletter posts. And that’s all from just the free tiers. 

But, like, don’t you wanna make money from your writing like they do? 

Nope. Not unless I can make mountains of the stuff. And we all know that almost no writer is doing that. 

Here’s the deal. I’m sick. Like, really sick. Like, so sick I spend 20-21 hours a day in bed. Like, so sick I only leave my home a few times a year when I need health care my primary care provider—who makes housecalls—can’t provide. And I’ve been that way for nearly a quarter of a century (though for the first few years I was a little bit more functional and less homebound). 

Needless to say, illness means I can’t provide the dependable labor that makes lots of surplus value for capital. In 2001, the Social Security Administration concurred (though it took them until 2003 to do so). I was economically useless enough to require the beneficence of taxpayers in the form of a disability benefit. Because I had the temerity to become disabled before I had racked up ten years of work credits/FICA contributions, and because I had no other financial resources (a trust fund, other residual income, a working spouse), they would support me through a welfare program known as Supplemental Security Income (SSI). 

SSI is heavily means-tested. I have to report income above $85, at which point they deduct from my monthly check a dollar for every two dollars that I make—that is, a few months after I fill out forms reporting that income. Plus I also have to notify SNAP (and fill out more forms) so they can reevaluate my monthly food stamp benefit. And notify my building management (and fill out more forms) so they can reevaluate my rent because I live in low-income housing. As you can see, income for me gets complicated quickly. 

And frankly, all my needs are met. Yes, SSI is notoriously parsimonious (the monthly benefit for 2026 is $994 while the $2000 resource limit—which includes that monthly benefit!—limits my ability to save). But I am lucky. I have subsidized housing in which I cannot pay more (nor less) than 30% of my income. I have the aforementioned SNAP benefits that pay for much of my food. I have the Oregon Health Plan (OHP Plus), our state’s Medicaid program, which pays for most of my medical care at no cost to me. I get help with electricity through a program for low-income customers as well as an annual grant from the Low-Income Home Energy Assistance Program (LIHEAP)—though for how long is anyone’s guess given that DOGE fired every single person in the federal LIHEAP office during its blitzkrieg last year. CenturyLink gives me low-cost (and very loooww bandwidth—10 MBPS) internet. My Obama phone keeps me in touch with Social Security and my case manager, along with friends and family so that I can receive frequent texts from my aging mother that are either incomprehensible or reporting yet another fall. 

Are there things I wish I could have if I had more money? Absolutely---both prosaic and extravagant. Camborzola cheese, smoked salmon, or fancy loose leaf tea. Luxurious silk or muslin pajamas. Paid Substack subscriptions (I know! What am I thinking?!). A leather chesterfield sleeper sofa. Writing workshops. Door Dash. Indian bone-inlay furniture. Raised wooden planters and ceramic pots for my balcony garden. Antique fixtures for my apartment. Plane tickets for Long-Distance Lover to visit more. Books (always). But do I need any of them? Not really.

Though perhaps a good case might be made for the plane tickets. Tucked into a parenthesis a few paragraphs above, I noted that Social Security considers working spouses to be a financial resource. If I marry, I lose SSI. Quite likely Medicaid (or at least the fully-funded OHP I have now). Possibly housing. Complicating it further, Long-Distance Lover is British. To get a spousal visa, I would have to prove on the application that should my Beloved be unable to work, I would be able to support him without him being a recourse to public funds. Which would be a tad difficult, what with being a recourse to public funds myself and all ("legal" immigration is a lot harder than many people think). And so for nearly twenty-four years we’ve made do with Yahoo Messenger and outrageously-priced phone cards and Vonage and Skype and now Google Chat along with plenty of plane tickets. That would be the reason I would want to make mountains of money: to be wealthy enough to not only not need SSI but to be able to sponsor a spousal visa for my Beloved. But unless the Magic Health Fairy sprinkles a lot of pixie dust on me, that is about as likely as watching the earth rise while sitting on the moon. 

But, like, Blogger doesn’t have the SEO reach of other blogging platforms. Don’t you want people to find your blog?

Sure. Though it’s not my primary concern. Those other blogging platforms either have quite the learning curve or a monthly fee or are located in a certain country currently engaged in genocide. 

I like the idea of returning to my roots. Of having my own semi-hidden space on the Internet to experiment with a quirky variety of recipes, playlists, gratuitous shots of hummingbirds and Mt St. Helens, and medium-form writing that’s more crafted than a journal entry but too informal to submit to lit mags. Perhaps even chart my cognitive resurrection, if not a physical one (I am surely tempting the Fates just typing that). You know, the way blogging was twenty years ago when I first joined Blogger and we were all just making friends and writing about our obsessions and monetizing content was gauche. It was so the dream of the 90s but alive in blogging. 

Because, of course, I have no idea if and/or for how long I’ll be able to stick with this blogging thing again. 

So, like, why are you starting to blog again now? 

My last post here, back in 2014, was titled ever so hopefully “Hiatus.” After a few years, I began to accept that it should have been “Goodbye.” I was getting sicker and my ability to write erratic to non-existent. Besides, who wanted to read the ramblings of some shut-in trying to give hot takes that were not especially original? There was so much better, more amazing writing online (if even far more that was mediocre or worse). And there was also micro-blogging, i.e. Twitter. Which is where most people were spending their time rather than writing and reading blogs. 

Over the last seventeen months, I've begun to be able to write again for reasons I do not fully understand (menopause? iron-infusions to treat long-standing anemia? having interlocutors again thanks to Zoom? Magic Health Fairy dust?). I'm even starting to write stuff that involves devoted attention to craft, that grapples with big philosophical and spiritual questions, that requires cracking open lots of books (even though my eyeballs are still saying "audiobooks, please!"). You know, pretentious shit that tries to be all artistic. 

But maybe I never did give up on “hiatus.”

I’m also dipping my little piglets into various social media platforms to see if any of them feel social to me. Basically 2026 is the year in which I try to Rip Van Winkle myself back online. Perhaps I’m too late to social media (to say nothing of blogging). Maybe everyone else is rushing for the door to “touch grass” now that the AI apocalypse is nigh. 

“For us there is only the trying,” says T.S Eliot in his poem “East Coker.” “The rest is not our business.” 

This is me trying. The rest is not my business. 

But, like, now I want to keep reading your blog. How can I get it delivered to my inbox like a Substack newsletter?

Still going on about Substack, are ya?

Well, dear reader, I’m flattered. Both that you made it this far and that you wanna keep hanging out with me. I'm trying to give an email newsletter a go, sending out new posts via EmailOctopus that you can read from the comfort of your email app. 

I fear there will be some construction on this blog in the coming months. I hope you won't mind the dust and disorientation. 

Hiatus

No, I'm not returning to blogging. At least not yet. I'm still far too ill (though slightly better than I was when last I posted). But I have been doing a little housekeeping off and on over the last year. Several months ago I put every one of the 500+ posts into draft status until I had time to sort through them all and decide what I might want to keep. More recently I chose to return to published status many of my "greatest hits" so that anyone new stopping by had an idea of what this blog -- and me, to some extent -- have been about. A couple of posts were re-published as if I had only just published them rather than simply returned them to the state in which they had already been, perhaps causing some confusion with RSS feeds.  I do apologize.

 Most of all, I hope you have been well, dear reader. I have missed you and hope I may return soon.

Imagine...

(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.)

Dear Dr Collins,

I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.

Now imagine that flu never goes away.

Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.

Now imagine you have that hangover all the time.

Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.

Now imagine having jet lag every day.

Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.

Now imagine that burning pain for years without end.

Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.

If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.

You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.

You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.

Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.

When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.

When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.

At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).

While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?

$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).

This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...

You would want someone to help you if you had this disease, wouldn’t you?

Thank you for taking a moment to imagine what my life is like.

Sincerely, etc.

(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)

(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)

How sexism gave men a "woman's disease"

There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In his post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease."

Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.

Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.

So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.

If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.

Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.

__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.

The ME/CFS advocacy conundrum

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.

____________________

*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.

Cousins among the medically oppressed

Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated

Stigma also played a part in denying mental patients treatment for physical illness. An Australian study found mental patients with heart disease were less than half as likely to receive surgery for their condition and were 80 per cent more likely to die from it than unaffected patients.
"We have missed these links [between mental and physical health]. Without them we fail to capture the full impact of mental illness," Professor Prince said.

Um, ya think?

Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people with ME/CFIDS because it will create "dependence." Or that people with ME/CFIDS do not have neuropathic pain, gastrointestinal symptoms, and chemical sensitivities. Because, you know, we're mentally ill, not physiologically. Seriously, I can't believe this is STILL going on but I read the linked article today, which deals with the discussions concerning the recent guidelines the British National Health Service (NHS) put together for physicians regarding ME/CFIDS. Grrr...

In an online group about ME/CFIDS that I read sometimes, someone posted a few months back about how even though our disease is not one of mental illness, the language a lot of us use regarding mental illness is often highly derogatory. Mental illness is very real, even if physicians use psychology to invalidate our suffering. I thought it was an important point. I don't want to be diagnosed with depression because it's incorrect, not because I dislike the diagnosis.

And how many of us have, say, heart disease but it's missed because doctors think we, like patients with mental illness, are just hysterical and need a bottle of Prozac and a shrink? Instead of pushing the mentally ill away as far as possible from us, we should be embracing them as our cousins among the medically oppressed.

The gifts of illness

It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick.

My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.

An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.

I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.

It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.

I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.

I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.

My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.

I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.

I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...

Obviously, there are some personality qualities that have been enhanced through illness including:

I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.

I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.

I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.

I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.

Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.

Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!

Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.

Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.

The list of loss

Yesterday was CFIDS Awareness Day. So I thought that I would list the things that CFIDS has taken from me. You know. For awareness sake.

Hiking

Singing -- I used to sing all the time. In the shower. In the kitchen. Around the house. I even use to cantor at my parish. Just a couple of weeks ago, a woman from my parish mentioned in an e-mail to me that they miss my sweet singing voice. I miss it too. I still sing a little bit every now and then, but since it's so energy intensive, I don't sing nearly as much.

Dancing -- Sometimes when I'm feeling good I boogie a bit to Shakira or Amr Diab. But boy does it wear me out after a minute or two.

Career

Being reliable

Going to church

Motherhood -- I always used to think that the term "biological clock" was a myth. At 33 years old, I'm appreciating that it's very real. And I'm starting to come to terms with the fact that I may very well never be able to bear children. First of all, there's my history of deep vein thrombosis and pulmonary embolism. And then hemorrhaging on the anti-coagulants. And then having to be hospitalized a second time for the pulmonary embolism. Even if I was healthy these would be serious barriers to safely giving birth to a baby. But add chronic illness to that, as well as the fact that each passing year I'm sick decreases my fertility, it looks very unlikely that I will be a mother.

Playing with my nieces and nephews

Reading and processing complex information (See "career" above.)

Riding a bike -- I have recurring dreams where I'm riding a bike. Symbol of being healthy I presume.

Friends -- It's not like any of my friends have stopped being my friend because of my illness. Indeed, for months after the surgery that ended in the DVT and PE, I had at least one visitor a day -- sometimes two -- for several months. It's just that, they all went on with their lives and I couldn't.

Gardening -- Hopefully at some point I'll get a nice little container garden going on my balcony.

Independence -- I depend on the government for my income. Meals on Wheels to cook for me. My caregiver to clean my apartment. My mom to drive me to the grocery story and anywhere else when I have the strength.

Privacy -- As a recipient of SSI, I had to provide all my bank statements to my case worker when I first signed on (after waiting 20-months to be approved for benefits). I'm required to keep all of my bank statements to provide to my case worker when my case is reviewed sometime this year. So, you know, don't wanna make any kinky purchases with my debit card.

Ability to earn a living

Ability to spend time with my boyfriend -- As a UK citizen, he's only allowed to be here for roughly six months (well, technically there are no specific rules but according to the State Department, you're not supposed to "abuse the rules"). If I were healthy enough to get on a plane, I could go and spend up to six months in the UK (and that is a definitive rule). Though because I'm on SSI, there are also limitations on how long I can be out of the country (no longer than 30 days or one calendar month -- I haven't gotten a definitive answer from Social Security).

Interacting with people I can see -- Yes, I chat with people online and if I had a web cam I suppose I could see them too. But it's not quite the same.

Getting out of the house on a regular basis

There are probably things I'm forgetting (what's new, right?). But it's a pretty sobering list nonetheless.

The Dying Days

Healer of my soul
Heal me at even
Heal me at morning
Heal me at noon
Healer of my soul

Keeper of my soul
On rough course faring
Help and safeguard my means this night
Keeper of my soul

(John Michael Talbot)

There was an episode of the X-Files -- one of the later ones -- where the villain was this guy who would kill his victim by sucking the life out of them. He'd open his mouth and you could see this gaseous form, the person's spirit I presume, slowly come out through of the mouth of the victim and then suddenly they'd collapse dead.

That's what having CFIDS is like.

Yeah, I never die, though there are days when it feels like I will -- the Dying Days. Like someone is sucking the life out of me just like that guy from the X-Files. Like someone missed something somewhere and now I'm going to slip away.

It has happened. Casey Fero of Wisconsin, who had been diagnosed with CFIDS, died in his sleep last summer. The autopsy showed that he died of heart failure from a long-standing infection of unknown etiology. When I take into account that the high blood-pressure problem I started having last spring disappeared once I started taking doxycycline (an antibiotic), there are moments when I'm good and truly afraid.

The last few days have been the Dying Days. I tell myself I'm being incredibly hypochondriacal, which is the last thing I should be with an illness like this. But what if my fear of seeming hypochondriachal is keeping me from expressing to the doctor just how seriously ill I am?

Nightime feels particularly frightening. Normally when I have the Dying Days, I tell myself that yeah, I've felt it before. And I woke up the next morning. And I'll wake up tomorrow morning. And then I go to sleep. But every since this last fall after the experience with the doxycycline and the story about Casey, that no longer works to allay my fears.

Last night I found myself afraid to close my eyes. Insisting that nothing is going to suck my spirit out of me. Thinking of that old prayer: now I lay me down to sleep, I pray the Lord my soul to keep. And if I die before I wake, I pray the Lord my soul to take. Then I thought about a lot of the Orthodox morning prayers from St. Basil and other early Church Fathers in which there is some sort of thanksgiving for living through the night. Superstition may have played a part in that, but I think it also reflects what living was like before EKGs and MRIs and sophisticated lab tests. You never really knew if you had something that might kill you.

Again, sorta what it's like having CFIDS.

There are no blood tests to tell you if you have it or not. There's not a machine they can hook you up to that says there's something wrong with your heart (or is there?) or your brain (well, fMRIs do show that we process pain differently). We just have all these little signs here and there saying something is not quite right. And, of course, living on the inside of it you sure as hell know something is wrong.

I find that all I can do is simply acknowledge that I have no control over this situation. That worrying will not change whether I'm dying or not. I simply surrender my need to know. Focus on each moment I have right now, though at times even that is frustrating because, well, it's hard to live life to the fullest when you're laying flat in bed. But then, usually the assumption there is in doing stuff and while I suppose I need to work on the being -- whatever that may mean.

And maybe I should make sure my mom has A.'s email and phone number in the U.K.

The born again feminist

I'll admit it. I'd never really thought about feminism much.

Not that I haven't known that I'm only able to not think about it because of the sacrifices many women before me have made. When I went to visit my great-grandmother before leaving to go to my freshman year of college, she grabbed my hands and remarked wistfully about how I have opportunities she never did. I can tell you at that moment I tingled with gratitude from my toenails to my split-ends.

Yet, those days of discrimination and oppression were over, right? I was never told I couldn't be anything I wanted to be because I was a woman. I was never treated any differently by my professors. I was accepted to top graduate programs in my field (Middle East/Arab Studies). The only time gender ever came into anything was when I was having my period or got the unsolicited lecture about "don't you know how they treat women over there?" when I would state what my research field was (because, you know, though I've studied three Middle Eastern languages as well as visited the region, I wouldn't know ANYTHING about that...).

Sure, I was aware that women were still significantly underrepresented in the academy. That the same struggle to gain tenure that our male colleagues faced also just happened to coincide with the time we were most fertile. And they were points I argued with those same male colleagues who would try to assert that they had to make the same choices about family during that time too.

But was I a feminist? Well, perhaps in a vague sort of way. It certainly wasn't the first label I'd give myself. I mean, feminists were those bra-burning, abortion-obsessed, Ms. Magazine-writing man-haters from the 1970s.

So I had to laugh with Germaine Greer when a Vatican letter in 2004 excoriated feminism. Seriously, had Ratzinger not left the Vatican in thirty years?

And then several months back I was surprised when, during an email exchange with a guy from a Usenet group that I participate in he described himself as a feminist. People still called themselves that? Yet that time I also felt rather sheepish. If a guy was taking feminism seriously, why the hell wasn't I?

Now that I'm no longer on the academic fast track and instead spend my days painfully aware of how little control I've had over my body for a very long time, feminism has begun to make a lot more sense to me.

My feminist awakening has come via my study of Orientalism, something all good little grad students in Middle East Studies do their first year. We trudged our way through Edward Said's fifty-word sentences and learned that the Orient was a concept created by elite Europeans in order to dominate them politically, militarily, and economically. These elites then became the authorities on the Orient, rather than those who actually lived there. Indeed, Orientals couldn't possibly be experts on the Orient because, well, they were Orientals and therefore weak, emotional, misogynist, sensual, and violent. In other words, incapable of being experts. At best they could be taught, like little children, how to have democracy and a market economy.

While I struggled to make enough sense of Said to write my paper in grad school, I suddenly understood Orientalism as a patient. If you've ever been in the hospital when residents are doing their rounds, you know what it's like to be imagined and objectified. You are simply there for them to learn about. They are the experts about you. Indeed, you can't possibly be the expert because you are the patient, the constructed.

One might argue that there isn't the same political agenda behind what doctors do. They are not out to colonize their patients and use them to further their empires. They are there to help people. And it's very true that a lot of doctors go into medicine to help people. But patients are the means for their, often large, incomes. And indeed, sometimes even empires -- academic or otherwise.

I keep replaying my experiences over the last several months with the urologist I was seeing for these persistent urinary tract infections. He'd always walk in and call me "kiddo." At first there was an appeal about that. It made me feel sort of young and vibrant at a time when I felt anything but. At the third appointment he slapped the chart shut and said, "alright, I gotta get in there." So, his medical assistant came and prepped some instruments and then I undressed from the waist down and took my position on the table with my feet in stirrups. Then Dr. P came in and stuck something up my urethra. Now, I've felt a catheter in the past and it was uncomfortable, but this was excruciating. I could feel liquid going in and out and when it went out it hurt even more. "Ah, see, that's a sign of Interstitial Cystitis." He left for a moment and came back. "I'm going to do something called a DMSO wash," he said as he inserted something up the tube in my urethra. "Now you won't have to keep going to the bathroom all the time." But...I didn't have to go to the bathroom all the time and had never even said that I did. "And you won't keep having to get up all night to pee." But...I rarely get up at night to pee.

Was he even listening to me?

As some of you may remember, two hours later I was in the ER having to be catheterized because I couldn't pee at all. You are not more aware of how much control over your life you lack than when you're peeing unconsciously into a bag strapped to your leg.

The next morning when he decided to leave the catheter in for a few days, he gave me a sample bottle of Flomax. "This will help things calm down a bit," he said with such certainty, despite the fact that just three minutes earlier in response to my ER visit, he exclaimed, "I don't know what's wrong. I've never had that happen before."

When I got home I looked up the drug to make sure it wasn't going to interact with any of my other medications and found that Flomax is a drug for prostatitis. Um, he is aware that I don't have a prostate, isn't he?

He removed the catheter a few days later and had me come in every couple of weeks to check my pee for infection. I had told him that I usually don't show leukocytes in my urine. You have to culture it to find the infection. He did the first time, though assumed it was clean when he did the DMSO wash only to find out three days later when the results came back that I did indeed have an infection. But after that he never bothered with culturing. And when my urinanalyses were clean twice in a row, he sent me home with a "good girl" and "nice to see you again, kiddo" and a promise that he'd do a biopsy if I had another infection.

I knew something was still wrong. I mean, I was still in a hell of a lot of pain. But all I could think of at the time was what the hell is wrong with my body? Why wouldn't it just show leukocytes like it was supposed to? Why wouldn't the pain just go away now that nothing was apparently wrong with it? Why wouldn't it just be a good girl?

Yet there was also a part of me that kept feeling like the problem wasn't with my body but with him. Was all the "kiddo" and "good girl" a way of reinforcing the patriarchal dynamic in medicine? A way to remind me of my place?

So when the inevitable infection came (this time two separate bacteria at the same time!), I decided I needed to go in there remembering that I'm not a child but a woman with a serious health problem that needs to be adequately addressed. I wore my hair up to try and look as "grown-up" as possible. My appointment was first thing when the office opened. And though he may have double-booked the appointment so that this guy also had an appointment first thing, he saw the thirty something male lawyer wanting a vasectomy first. And though none of my appointments with Dr. P have ever lasted more than five minutes save for that disastrous DMSO wash, he spent 40 minutes shooting the breeze with this guy (I could hear because neither of our doors was closed). When he finally did come into my room, I stated that the infection had come back, and that I was returning to him as he had instructed and that my doctor said I needed to have a cystoscopy. He nodded curtly, slapped the chart shut and summoned the medical assistant to prep for the cystoscopy.

Huh? Everything I'd read about cystoscopies said that they took place under a general or local anesthetic, usually in a hospital OR. When I mentioned this to the medical assistant, she snapped that they weren't doing that today.

I undressed, but kept thinking, with memories of that awful pain from before, Michelle, you can't let him to do this do you.

When he came in, I lied and said that my doctor told me this was supposed to be done under anesthetic. He stopped for a second, then nodded and said, "yeah, let's do it in the hospital."

On the one hand, I was horrified that this guy was going to do a surgical procedure (minor though it was) without any consideration of my discomfort. Yet, on the other hand, it was the first time in my life I think I ever stood up for myself with a doctor. But even then, I did it by appealing to another doctor's expertise, not mine.

A few weeks after the cystoscopy, (which was normal), the anniversary of Roe v. Wade approached and Nate, my fellow editor at SRS, wanted to have an editorial post on abortion. He put together a nice post about consistent ethic of life and social justice and all, but ultimately I found myself uncomfortable with my earlier ambivalence about abortion. With all that I had been through with my body, with doctors making assumptions about it that have left me in the ER with a pulmonary embolism or my knee joint hemorrhaging or unable to pee, I could no longer privilege what might be a life over what is definitely a life. I couldn't agree with men in Washington or the Vatican deciding what should happen to my body. With them not trusting me enough to make the decisions I need to make for my body at any given moment. For the first time, I so got that old pro-choice slogan my body, my choice.

And a few weeks after that as I read through the posts in the Big Fat Carnival, I thought even more about how doctors and lawmakers and insurance executives and ad agencies are telling me what my body should look like and be like and feel like.

After years and years of being bullied for being fat or ignored because my illness doesn't fit a recognized medical narrative, I found myself wanting to scream at those who have for so long controlled my body, ENOUGH! It's my body, not yours. I have to actually live in this damn thing. I have live with whatever assumptions and decisions you make about it. I have to make choices that feel best for me, and I shouldn't be made to feel guilty about it. I shouldn't be shamed into doing what others, who don't personally have to live with the consequences of said choices, believe I should do. I'm the expert on it, not you. I know every little thing it does or doesn't do, even if I can't explain it with whatever terminology you hide behind.

And ultimately, I'm not the first to insist on a right to decide about what happens to me. That's what feminism is for. Why it's still here for me to connect to.

We'd come a long way, baby, indeed in the 70s, but feminism is hardly passe. I'm grateful for it here, right now.

Thoughts while unpacking

Several days of spending several hours unpacking box after box of my life has given me a lot of time to contemplate the changes I have made, both recently and over the course of my life accumulating all this crap. I've found it to be a bittersweet time. A time of lingering grief mixed with relief and even a little excitement.

I'm adjusting to the shift from an academic-centered life to the illness-centered life as symbolized by my replacing the thesis material that I usually keep in the portable file on my desk with folders of Social Security and HUD paperwork. Accepting that since I don't have as much storage space in this apartment, boxes of my old Arabic, Persian, and Hebrew flashcards and textbooks, as well as notes from undergraduate courses can probably find a new home in my mother's storage shed as they will not be readily needed anytime soon. Unpacking novels first and placing them on the most convenient shelves where my Middle East section would have been before. Indeed, those books are still in their boxes waiting until I have the time, energy and money to get another eight-foot plank of particleboard.

But I have unpacked gardening and craft books that remained unpacked in my last apartment. As a student I never had time for them, especially as I was so sick I hardly had time to even be a student. But now, well, when I'm feeling good, I can make a new lampshade or plant a winter container garden if I want to.

And that's when I realized I was so relieved to finally not be a student anymore. Despite all the snide comments I'd hear from people that I was becoming a "professional student," it was not a profession I chose. I wanted to be done. To move beyond the ambivilance that comes with being a student to the permanence of being a professor. No, I didn't end up becoming a professor, but I am done with being a student (at least for the forseeable future). I have the stability one lacks while in school. Which is funny in a way because school was always what provided stability throughout my chaotic childhood (or lack of one) and in having to give it up, I was terrified I would lose that precious structure it brought to my life. But, you know, structure can be so overrated.

There are still a few more boxes to go through, more remnants of my old life to remind me of what it was like to be on the academic fast track. But now there's enough room in this new apartment to live the life of novel-reading and domestic contemplation my illness has brought.


AUTUMN EQUINOX

I feel my body letting go of light
drawn to the wisdom of a harvest moon.
I feel it welcome the lengthening night
like a lover in early afternoon.

My dreams are windfall in a field gone wild.
I gather them through the lengthening of night
and when they have all been carefully piled
my body begins letting go of light.

Indian summer to leaf-fall to first frost
the memories that were carefully piled
become the dreams most likely to be lost.
My dreams are windfall in a field gone wild

now that memory has abandoned them
now that Indian summer, leaf-fall, first frost
have become the same amazing autumn
skein of those dreams most likely to be lost.

I feel my body letting go of light.
I feel it welcome the lengthening of night,
the windfall of dreams that have long been lost
to Indian summer, leaf-fall, and the first frost.

-- Floyd Skloot

Meaningless titles

I finally broke last night.

Actually, I started breaking in the elevator as I went to meet with a professor yesterday afternoon. Nauseous and exhausted and nearly twenty minutes late, it’s like it finally hit me: I can’t handle school. Even just a little bit of it. Just my piss ass 5 credit hours. And if I can’t handle it, I’m going to have to drop out again. And if I drop out this time, I don’t see how I’m going to go back anytime soon. Not only is a Ph.D. apparently out of my grasp, but it’s becoming increasingly clear to me that so is an M.A.

I HATE this fucking illness.

I HATE how much it’s taken from me.

I HATE how much it just keeps taking.

In my moment of profound self-pity last night I exclaimed to my walls lined with books that it’s not right. I’m too smart not to have a PhD. Didn’t my advisor say when I was an undergrad and rattling off all sorts of unique research ideas that I was going to create my own new field and be publishing like crazy? I’m too smart not to have an M.A. I mean, I’ve even published a little. Not even a damn Master’s degree from my piss ass state university?

Of course, there are plenty of people who are at least as smart as I am who don’t have Masters or doctoral degrees. I’ll survive without them as well.

They are just silly, meaningless titles in the long term scheme of things.

But they’ve been important to me.

Important if I ever want to teach.

And I so miss teaching.

Hell, at this point I even miss grading those pathetic undergrad papers where they don’t even understand the difference between a run-on and a fragment, not to mention a clearly articulated thesis.

Well, okay. Maybe not quite that much.

Not that I’ll be able to manage teaching in a classroom anytime soon. I can’t even make it to class as a student regularly enough as it is.

And Monday I have a social worker coming to assess my situation for assistance with housekeeping and grocery shopping.

I can’t even take care of myself by myself.

I remember two years ago when I had my Social Security hearing in front of an administrative law judge regarding my claim that had been denied. The judge asked the vocational expert if, based on my past education and symptom history, there was any type of work I could do. The vocational expert said that because of my poor health there was no job for me in the national economy. My Legal Aid lawyer was ecstatic. I’d won my case. When the ruling came a month later fully in my favor, it was bittersweet. On the one hand I was so relieved that after two years I was finally going to have an income. But I was approved because I was essentially useless.

I know at this point it’s time to let go of those last remnants of my old life. Of that energetic student who could study three languages and pull off “A” research papers at the rate of a page an hour. I know God is leading me elsewhere and that where ever that is, it’s not a bad thing. Indeed, it’s probably quite wonderful in its own way.

But this week it’s been hard to let it go. I miss it.

CHANNEL

In time the fork my life took
as illness changed its course
will wander to the main stream
and there below the long waterfalls
and cataracts I will begin to rush
to the place I was going from the start.
I imagine looking back to see
the silted mass where a huge bend
holds sunlight in a net of evergreen
and the sky unable to bear its own
violet brilliance a moment longer.
Out of shadows where the channel
crumbles comes the raucous sound
a great blue heron makes when startled.
Scent of peppermint rides breezes
from the valley and I catch hints
of a current beneath the surface
just as darkness unfurls.
There I imagine what was lost
coming together with what was gained
to pour itself at last into the sea.

By Floyd Skloot (a fellow CFIDS victim) from his book The Evening Light. (He's got some great poems, so do buy it if you can, or any of his other books.)

Life behind the surface

When I first read the quote in the heading of this blog, it was in Floyd Skloot's memoir, The Night-Side: Chronic Fatigue Syndrome and the Illness Experience. As someone who has this poorly-named condition (also known as Chronic Fatigue Immune Dysfunction Syndrome or Myalgic Encephalomeylitis -- CFIDS/ME), Sacks' comment gave meaning to my life at a time when I was struggling to give meaning to losing my health, career, social life, and financial and physical independence. Even if I was sick, I was still a writer. I still had a mind (even if it didn't work as well as it used to) to make sense of the horror and wonder I was living that my peers were not.

As I thought about titling a blog in a way that would best describe all the disparate parts of me, this quote eventually came to mind. While it refers to the illness experience, the title "behind the surface" could also describe what I do as an academic studying American Evangelicalism and the Israel/Palestine conflict. When people find out what I study, I am peppered with questions and spend a lot of time explaining what is happening behind the surface of CNN or The New York Times.

Being poor and going through the disability process allows one to also see behind the surface of a welfare system set up to discourage truly helping the poor. One that seeks to punish the poor while maintaining the barest minimum of aid a civilized society can give and still claim to be civilized (though I'm not too convinced by said claim). Through my sister Tammy, I get to see a bit behind the surface of black America and just how racist a society we remain, as well as the hope and love in people working to soften its impact.

As a Christian who grew up evangelical Baptist and converted to the Byzantine Rite of the Catholic Church on Pentacost of 2000 (is that not the coolest chrismation date ever?) but who is also learning about Buddhism and Taoism through treatment for CFIDS/ME, as well as spent a lot of time learning about Islam when I studied Arabic and Judaism when I studied Hebrew, I'm trying to learn to look behind the surface of the literalism I grew up with and towards the dynamism of a relationship with God. This is particularly challenging for me as an academic who has been trained to think critically. To deconstruct any text (and you'd be surprised at what I can turn into a "text'). At the moment I'm working at trying to be less intellectual about my faith and to feel it a bit more.

So, here's to life behind the surface...