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.
Friday, September 04, 2009
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.
Friday, December 29, 2006
Feast of the Sacrifice
So the US and its puppet in Baghdad are celebrating a twisted form of Eid al-Adha today by sacrificing that most flawed and defective animal, Saddam Hussein, to the god of whatever the hell Bush et al. are trying to do in Iraq (securing oil revenues? a Pax Americana Empire?).
I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.
So then, why do I feel like crying?
A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.
No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.
On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.
Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.
Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.
Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.
Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?
Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.
I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.
So then, why do I feel like crying?
A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.
No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.
Who encouraged Saddam to invade Iran in 1980, which was the greatest war crime he has committed for it led to the deaths of a million and a half souls? And who sold him the components for the chemical weapons with which he drenched Iran and the Kurds? We did. No wonder the Americans, who controlled Saddam's weird trial, forbad any mention of this, his most obscene atrocity, in the charges against him. Could he not have been handed over to the Iranians for sentencing for this massive war crime? Of course not. Because that would also expose our culpability.When Hussein was first found guilty back in November, Fisk asked "Have ever justice and hypocrisy been so obscenely joined?" Now that Saddam Hussein is dead, the justice part feels missing and I think it was the last sentence of his article today that explains why: "But we will have got away with it."
On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.
Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.
Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.
Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.
Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?
Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.
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.
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