(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.)
Showing posts with label CFIDS/ME experience. Show all posts
Showing posts with label CFIDS/ME experience. Show all posts
Tuesday, November 08, 2011
Saturday, October 30, 2010
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."
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.
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.
Friday, September 04, 2009
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.
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.
Thursday, September 06, 2007
Cousins among the medically oppressed
Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated
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.
Um, ya think?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.
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.
Friday, May 11, 2007
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.
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.
Saturday, May 13, 2006
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.
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.
Sunday, March 19, 2006
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.
Tuesday, February 28, 2006
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.
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.
Sunday, November 20, 2005
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
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
Friday, May 13, 2005
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.
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.)
Monday, March 14, 2005
Wholeness of being
“...In this here place, we flesh; flesh that weeps, laughs; flesh that dances on bare feet in grass. Love it. Love it hard. Yonder they do not love your flesh. They despise it. They don't love your eyes; they'd just as soon pick em out. No more do they love the skin on your back. Yonder they flay it. And O my people they do not love your hands. Those they only use, tie, bind, chop off and leave empty. Love your hands! Love them...You got to love it, you! And no, they ain't in love with your mouth. Yonder, out there they will see it broken and break it again. What you say out of it they will not heed. What you scream from it they do not hear. What you put into it to nourish your body they will snatch away and give you leavins instead. No, they do not love your mouth. You got to love it. This is flesh I'm talking about here. Flesh that needs to be loved. Feet that need to rest and to dance; backs that need support; shoulders that need arms, strong arms I'm telling you..." (Toni Morrison, Beloved, New York: Penguin, 1988, p.89)
I've been doing a lot of emotional house cleaning of sorts lately. I mean, that seems like a good thing to do during Lent. And one of the things I've been thinking a lot about lately is my body.
In the Byzantine Church we believe that worship should be a sensual experience and not just an intellectual one. We kiss icons and light candles. We chew the squishy wine-soaked bread the priest drops into our mouths during Communion (or cruchy bread if it's during the Pre-Santified Liturgy). We chant (sing) the entire Liturgy or listen to others chant. We stand and bow and during Lent do full-bodied prostrations. We breath in the heavy scent of frankencense that the priest incenses throughout the church several times during the Liturgy. We gaze upon icons of the Holy Mother, the Pantocrator, and various events in the lives of the two of them. Frankly, as someone who has a difficult time processing sensory input because of CFIDS/ME, I'm often exhausted by the end. But in a happy sort of way.
It was this sensual element that drew me to the Byzantine Church from my evangelical Protestant upbringing. And it has helped me in my journey to integrate my body into my identity. Shown me that God loves my body so much that He becomes bread and wine that I injest so that He can become part of the very mitochondria of my cells.
Of course, that is not the message I had growing up. In the last few weeks, I've begun to appreciate the unrelenting attack upon who I am as a physical being. The more I think about it, the more I understand how my body and my mind/soul became separate. My body was clearly bad. It was fat and therefore clearly not reflecting the "victorious life in Jesus" my evangelical Protestant upbringing said I should have nor the healthy body my doctors bullied me about not having. It developed sexually too early when I finally had to start wearing a bra when I was nine years old because my breasts were large enough to fill a C cup. It was ill and hurt in ways laboratory tests could not explain.
But in my heart I was desperate to be a good girl. To follow the rules. Since my body was bad, I had to separate it from me. There was my deviant, disobedient body and my ever so obedient mind/soul craving what I understood to be "normal." There was my heavy, broken, hurting flesh, and my active, dynamic, bubbly mind/soul longing to be free from what has become, in many ways, my own Abu Ghraib.
As I’ve begun to appreciate the cultural, familial, medical and sexual violence done to my body, I’ve been able to integrate it into who I am as Michelle.
Who is fat.
And short.
And has a beautiful smile.
And soft, luscious skin.
And voluptuous curves.
And large, droopy breasts.
And a jiggly ass.
And a heart that breaks.
And hands and feet that hurt.
And a brain that thinks too much.
A body I want to protect. And nourish. And feel. Not be drafted into, or even actively enlist myself into hating.
A body that, like Baby Suggs, holy, in the above quote from Beloved, says, I got to love.
Each day during Lent we say a special prayer by St. Ephraim of Syria that includes the line, "Grant to me, your servant, a spirit of wholeness of being..."
And indeed, during this Lent, God is answering that prayer in profound ways.
Sunday, January 16, 2005
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...
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...
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