The Miraculous and Unexpected Happened

August 15th last year, I found myself on a table in a fluoroscopy lab as a resident, assisted by a lab tech, took directions from another doctor yelling from the other room on what would end up being the 4th or 5th attempt at a spinal tap with my body barely responding to the local anesthesia they were using on me.  To be fair to the resident, most of those jabs weren’t his, and he would have gotten it his first time if they’d realized I needed a larger needle than most people.  The pain shot and burned around my rib cage, following the nerves there like electric wiring; it pooled in my hips and ran down my legs over and over again.

I’ve been meaning to talk about that day before now, to talk about how the pain I experienced was nothing less than ordeal work that has changed me forever.  I no longer fear pain like I did before.  I no longer worry if anything they do to me medically is going to hurt (though I still am not that fond of having my eyes touched, which happens regularly enough that I know I can get through that, too).

What I remember, though, is that my God was there for me, and in that moment of agony, I felt his hand tightened around mine.  I heard his voice tell me that everything was going to be okay, but it was important for me to experience this.

A month later He would drop the bomb that He was leaving.  Somewhere in there I handed the management of my healthcare (note: not my health, but healthcare) to Odin, who promptly lit a fire under my ass and forced me to stand up for myself in a situation where I wasn’t getting heard.  The day I saw my new neurologist, I spotted a valknut hidden on the side of some hippie van covered in flowers in town.  I knew things would work out the way they were supposed to…  I was still skeptical.

I had another follow-up about my pseudotumor cerebri two days ago, and the days leading up to it were horrifically stressful.  The only thing they’ve found helps take some people into remission is weight loss, and since I have a history of eating disorder this has been the part of this experience I’ve struggled with this most.  And to make matters worse, I had managed to gain weight instead of lose it, though to be honest beyond worrying about getting lectures from well-meaning doctors, I haven’t cared.

My appointment on Monday came with me not being able to see one super subtle thing on one of my visual test.  There were some extra beeps on my visual field test.  I was absolutely certain that my vision was going, which is the big fear of the disease.  I was sure I’d gotten worse.

I commented to my mother that what I really, really wanted to hear was that there was no sign of pressure and that it was time to wean me off the diuretic that has started to effect my autonomic nervous system and give me more heart issues than usual.  But I’ve been at this chronic illness thing for 30-some years.  I said that I didn’t expect to hear any of that; I no longer hope for the best but accept that things may not change.  That is a hard thing for someone to understand who doesn’t deal with this level of illness, but it’s the very best place one can be in coping-wise as long as they don’t let the darkness of it all swallow them…  Because that’s the danger of it.

My doctor came in, read all the tests, and checked out my eyes.  And then the very last thing I expected to happen happened…

He said the words, “I see no signs of pressure today.  I think, despite your weight gain, that your neurologist can trial tapering you off the medication.”

I started to cry the moment I got out of the clinic.  Yesterday I was prone to weeping in joy.

But as the shock has worn off, I started to realize something…

Last January my friend acting as Volva yanked something off of me in the middle of seidr, and it was terrifying.  My friend who very obviously was introduced to me in a way that I still can’t entirely believe wasn’t orchestrated in part of this story by the Gods.  But what was even more terrifying in an exciting way was that I felt something open up and start to drain at the back of my head that night.  And while the process has been slow, looking over all the reports from doctors between then and now shows that in the last 7 months the pressure in my head had started to wane where before it had been getting worse.

I rarely share publicly words from my private journal, but I feel compelled to here.  What I had asked that night in seidr was what it was that Odin wanted of me.

The answer was knowledge, knowledge, knowledge (by the end she was yelling the word).  She said she saw me with a black veil over my head.  She saw the iridescence of black feathers.  My left hand was a raven’s wing, and in my right hand was a rock.  I was standing on a labyrinth that had been smoothed by water.

It was at that point that I asked where I was to start.  First, she screamed and doubled over in pain, which…  Everyone that has ever looked into my wyrd has had this sort of reaction, or they’ve at least spoken of pain.  Much pain.  It’s pretty fucking terrible to understand that the pain I feel reaches out that far.  Someday I may get enough bravery gathered about to ask why that is…

But she told me the labyrinth was my brain…  Not my mind, but my brain.  She said something was at the back of my brain blocking “it.”  It was effecting my arms.  Then she yelled, “Careful!  Careful!”  She proceeded to feel for me, and climbed onto the ground.  She found the woman next to me, and grabbed onto something in the air and yanked.  However, I knew she was aiming for me, because when she did that I suddenly felt something dislodge and pull from the base of my skull.  I felt the pressure in my head drain.  Later she said it was like a parasitic worm that had been wrapped about my chest. – from my personal journal, 1/13/2015

I hadn’t thought much about that night in my living room where I had my first experience with seidr until this morning over coffee.  The skeptic in me is hard-pressed wonder if this was just a coincidence, but the believer in me will win out in the end.  Checking over my neuro-opthalmology notes, in January the signs that I had pressure in my head had lowered slightly just a 2 weeks after this experience.

Now those who know me in my personal life know that when I talk of the Gods, it is with belief and all the conviction that goes behind it.  There are layers there, though, where somehow I didn’t believe as much as I do now.  My utter avoidance of all things Team Heathen turned into a brilliant line of where Odin (Woden?  He’s preferring Woden lately) tipped one domino stacked against a hundred more, setting off a chain reaction to reveal that He’d always been there.  Always.

Always.

I am a mystic.  I am a believer.  And I am a woman of both science and faith…  And perhaps that “and” is sometimes more of a “but.”  While the medicine and modern science was 100% necessary and the right choice, I know that in the end this disease that has no real treatment, no cure, no explanation as to why it happens is/was in the end is managed and treated by Odin.  I may not be in remission.  I may not be able to get off some of my pills…  But part of me rests in the comfortable place where Odin has this.

Out of what feels like a million novels about the Gods and Spirits stepping into the lives of others that I feel like I’ve read, I didn’t see this coming.  And perhaps that’s what this situation has taught me the most…  There are degrees of belief and faith in the Gods.  Sometimes those beliefs don’t have to be tested.  Sometimes the Gods metaphorically pull the tablecloth out from under the dishes without them breaking over dinner, and you’re left in quiet shock, eyes bugging, because your life has suddenly became the makings of fiction.

And your heart explodes with love for Them.  You can never go back to the way things were before, but no matter what happens you also realize that doesn’t really matter anymore.

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“Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase

(Update 1/6/16: As of today, this post has been read almost 80 thousand times.  It was originally written for the Pagan and Polytheist communities and those who regularly read my blog, but very clearly it struck a chord with a lot of people.  I’m actually still pretty shocked by that.  I have made the decision to move any more writing on disability to a new blog, Wunderkammer by C. Laurentine, which will document living life as a disabled artist and activist.  So if after reading this you decide to follow me for my writing on disability, it will be over at the new blog.  Thank you.  Thank you a million times over for reading this.  Thank you. – Camilla)

A friend posts an article on Facebook about how the United States’ medical system does not meet the needs of those with chronic pain. This is a reality that I have experienced. This is a reality that I regularly speak to others who experience chronic pain have also experienced. About a month ago when I was at the doctor’s office for my annual exam, I overheard 2 medical workers talking about how they hate when patients say they’re in pain, because they know they’re over-reacting. I was horrified, but it wasn’t the first time I’d heard someone in the medical field say something like this.

When we talk about chronic pain, and disability in general, inevitably someone pops up to say something like the following:

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach. Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests. Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body. Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

This is an actual response to my friend’s post about chronic pain. I’m being kind and not putting names up. Some of you out there might be nodding your head to what is being quoted here right now. I am not exaggerating when I say that this was the second time in the same day I’d seen these sentiments said by 2 different people, and I’d not spent much time on social media yesterday. Being active in the chronic illness and disability communities, I see these statements on a daily basis.  I see the effects on those who it’s said to that don’t live their lives out in the public.

I expressed in a frustrated moment on Facebook that when I hear the words “Big Pharma” I stop listening, because I assume it’s going to be filled with a bunch of unscientific nonsense. And that got challenged, because obviously I’m making assumptions that aren’t nice. Yet I encounter the same situation day in and day out, and I have many friends with chronic illness and invisible disabilities who also express this same sort of experience happening to them regularly.

So let me take a big deep breath here as I calmly say this: I am sick of being nice about this shit, and I’m horrified that those fighting in the social justice realm are constantly ignoring what disabled people are telling them about their experiences.

As a community, we’ve risen to the occasion (somewhat) appropriately, trying to confront race, sexual orientation, and gender in social justice, even though I realize it’s not enough. We fall behind a little more in discussions on class, but we also have a very epic conversation going on about capitalism currently. But over and over and over again I see people fall short on the conversation about social justice for the disabled down to the point where able people regularly tell us we’re taking care of ourselves incorrectly or not doing everything imaginable to treat ourselves.

So, allow me to begin with why the above quotation is a big old line of shaming BS line-by-line. (Please do your best to remember that this is a disabled person telling you about her experience, and don’t come back with a “not all people” statement. Because derailing.)

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach.

Stop and ask yourself three questions here… Do I suffer from chronic pain, which would allow me to actually be speaking from a place of experience? If so, did it help? If yes to both of these things, great! I’m genuinely happy for you, but please remember that everyone’s body is different (never mind diseases vary from person-to-person) and may not respond in the same way. But try not to use sweeping generalizations and talk from a place of your own experience.

If the answer to the first question is no, then stop talking. Just stop. As a white person, I wouldn’t try to tell a person of color what racism was about. As a cis-gender person, I wouldn’t tell a trans person how I think they should navigate their lives. Disability and chronic illness is no different. If you don’t experience, stop, listen, and learn. Your place is as an ally if you choose to be one, which means you need to stop and realize that you do not experience what a disabled person is talking about.  I hope you never do.

Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests.

Okay, so here is where I’m going to get into why as an ally, I really wish you’d stop using the term “Big Pharma…”

First of all, I want to show you what my medicine box looks like as a person with Ehlers-Danlos Syndrome Hypermobility Type, Idiopathic Intracranial Hypertension, 3 types of migraines, tension headaches, Hyperandergenic Postural Orthostatic Tachycardia Syndrome, Dysautonomia, severe environmental and food allergies, probable celiac (a comedy of errors cut out the gluten before I could get tested properly, and I’m unable to challenge because my reaction is documented as very severe), an immune deficiency, and Mast Cell Activation Syndrome. Add to that social anxiety disorder and panic attacks, because my body thinks everything is a threat to its life. Add onto a couple more suspected illnesses that I just don’t have the energy at this point to get tested for, because I spend at least one day a week in a doctors’ office. Add to that a few other things I’m just too lazy to type out, because they’re common but fucking painful all the same.  And I am one of the mildly afflicted EDS cases out there, which the Ehlers-Danlos is to blame for all the rest.

A white box filed with 20 different pill bottles and boxes

Hopefully you notice I take a mixture of prescription medication, over-the-counter medication, and supplements (Valerian, garlic, vitamin D, and vitamin C for starters, but my tea cabinet is rather epic since I am a bit of an herbalist).  None of this is making me sick, though it’s taken me over a year after diagnosis to balance it properly, and it has to be adjusted every few months.

Secondly, here is the fist full of pills I take every night before bed on a good night. On a bad night, it’s more.

A hand holding 10 different pills

Those of us with disabilities who are on medication regularly depend on “Big Pharma” to stay alive. The reason I wish people would just stop throwing the phrase around is that they are only looking into a fraction of what’s wrong with the medical system when they talk about it. And even if they’re not about to spout off some unsolicited advice or some shame to any disabled person happening upon them, they are in a minority of those who don’t use the phrase to shame people for doing what it takes to survive. And it is one of the disability world’s derailing “not all (insert majority)” statements if you try to argue that not all people talking about “Big Pharma” do these things.  The vast majority do, and I’m not the only disabled person out there saying this.

Do I think the pharmaceutical industry is corrupt? You bet I do. You know what else is corrupt that you’re not talking about when you say “Big Pharma?” The state governments in places refusing to reform medicaid so that poor adults are still going without medical insurance. I had a friend break her foot recently who didn’t want to have to go to the ER, because it was too expensive and she had no health insurance. The fact that medical insurance is so damned expensive that, before Obamacare, I could not afford to pay for it, I couldn’t afford to get diagnosed to prove I was disabled, and I went years suffering with absolutely no treatment at all while going into extreme debt every time I had a medical emergency, which with my diseases happens pretty often.

That ignores the fact that the entire medical system is an industry, meaning it’s meant to make money.  It is broken.  The entire thing is broken.

I am not saying that the pharmaceutical companies in America aren’t corrupt. I have a disease 1 in 100,000 people get. There is no approved treatment. There is no cure. I will never in my lifetime see either of these things, because it’s a rare disease that won’t make money for the pharmaceutical company if they spent tons developing it. Trust me, I have a very vested interest health and medical reform.

But I depend on medication to live and function in a relatively normal manner (most days). I take a diuretic to keep my brain from being crushed by my cerebral spinal fluid. I take a beta blocker to keep my heart from going into tachycardia just because I sat up or, Gods help me, stood up instead of laying flat on my back constantly, but also to make sure that my aorta doesn’t get any bigger than it already is by keeping my blood pressure down. If it does, I run the risk of it dissecting from my heart. I take an old school antidepressant to try to prevent a constant headache instead of just wanting to die from horrific head pain and various other symptoms any time a storm comes through.

And so, even if you aren’t about to spout off how I’m not taking care of myself in the way you feel I should be when you say Big Pharma, you are 1 in probably 60 people I encounter in a given month not using this term to lay some shame on me not working hard enough to not be sick.

You’re hyper-focusing on one part of a much larger problem when you use the term “Big Pharma,” and to put it bluntly, you’re using a term that is steeped in ableism the vast majority of the time. Which, my allies in social justice for the disabled, I know you’re not intending to do. So please, listen to those of us in the actual fight, and as an ally please stop talking about “Big Pharma.” It’s a buzzword that needs to go.

Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body.

First of all, again, this is blaming the chronically ill. Obviously we are just not willing to deal with our emotional problems, and if we did we would no longer be sick or in pain. We’re not even aware of the fact that we could be without pain…

Let me lay down some more anger and swearing here. (And YES, I have a RIGHT to be FUCKING PISSED OFF ABOUT THIS BULLSHIT. It’s ableism! It’s privilege and blaming the victim!)

I don’t know a single chronically ill person out there that doesn’t fucking know that emotions play into how they’re feeling physically. I have a disease that is literally triggered by stress or whatever my body perceives as stress, and I fear the day it becomes the disease that’s the next health nuts latch onto as the source of everyone’s problems like gluten currently is and everyone decides (again) that I’m a hypochondriac (which in the wrong situation could kill me). I don’t know a single chronically ill person that doesn’t know that there are people out there that 1) are so steeped in their privilege that they don’t realize they have absolutely no idea what it’s like to be in chronic pain, and 2) have all the answers and yet aren’t a medical professional of any kind.

Not only are you singing your able-bodied privilege here, but you’re coming off as a total dick.

Trust me, I’ve been in therapy for 20 years. My therapist regularly tells me that I’m the most well-adjusted chronically ill person she knows. All of my mental health issues have been proven through testing to be due to physical causes – Those being anxiety, panic attacks, and PTSD.  My celiac disease looked like bipolar disorder, but I hate mentioning that because I don’t want people to latch onto the fact that I’m in a minority of people who actually had something fixed by dietary changes and apply it to every other bipolar person out there.

Not everyone handles this stuff like me, though. That’s perfectly okay. Some chronically ill people have developed emotional problems because they are constantly being told there is nothing wrong with them. Some chronically ill people do have mental health issues, because they’ve gone years upon years without a diagnosis or being diagnosed incorrectly.

I have been at this so long and have heard it’s all in my head so many times from friends, strangers, doctors, and loved ones that, despite having a ridiculously long list of diagnosis and more specialists than I care to admit to, I still sometimes genuinely worry that I’m a hypochondriac.  Or worse, maybe I’m suffering from what used to be called Munchhausen’s…  Maybe I just want attention.  The worst part of this phenomena?  I’m not the only chronically ill person who struggles with this.

I have PTSD, because I spent decades in the medical system with doctors telling me I was a drug seeker, a hypochondriac, mentally ill, and (my favorite) lacking in a strong spiritual foundation. Which, if you really want to get down to it isn’t just ableist, but it’s sexist. Think of the Victorian woman diagnosed with hysteria. We’ve really just changed the name to hypochondriac. Women are more likely to get this label slapped on them, after all. Point in case: It took me decades to get a diagnosis; it took my husband 2 weeks to get the same diagnosis.

I could rant on this forever. Just understand this: We know. You are not more informed than the chronically ill people you are shaming. Some of us regularly have to deal with the fact that we know more than our own doctors about the diseases we have. Your skimming of WebMD and Natural Health News does not make you an expert.

Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

Might I suggest doing some actual shadow work to the person who said this, because what you just laid out was a giant heap of privileged bullshit. You may want to dig deep and examine why you feel so enlightened on other people’s lives that you have the right to judge what they are doing, holding it up to your personal standards of health.

When I say I’ve been on this path for 20 years, don’t you think that maybe I’ve done some actual shadow work? Because when you say “doing some actual shadow work,” what I hear is “You’ve been fucking around on your spiritual path, and if you would just buckle down and do the work…” This is steeped in puritanical judgment and is saying “If you don’t work hard enough, it’s your own fault you are sick.”

You may be well-meaning, but this is, once again, putting the blame on the victim. It is saying that they are not working hard enough to fix their suffering. Period. End of story.

I need to break this down more, though, so you hopefully examine it…

I will be the first to say that, in my own life, meditation helps me. I have been doing it since childhood, and I do it even when I hate it. Offering, prayer, and meditation are the first 3 things I suggest to someone wishing to embark on a spiritual path. If meditation was going to fix my disease, don’t you think it would have by now?

Secondly, you have no idea what a person’s body is doing, so you need to stop suggesting things like yoga. Let me explain why… I have a connective tissue disorder. This makes me really, really flexible. Like freaky contortionist levels. I have had absolutely no training, but my joints are loose from the disease I have. If I did yoga, I run the risk of making my joints even looser, which puts me at higher risk of spontaneous dislocations than I’m already at. Now if I had a yoga instructor who 1) I could afford and 2) knew what Ehlers-Danlos was, maybe I could do yoga safely.

But the point here is you are not an expert in my body. I am. I am not just sitting around wishing I had a magical pill that made all the pain go away. Okay, actually I am, but reality tells me that’s not going to happen, because that magical pill would also be free of side effects. I would like my pain and suffering to go away with a single pill, and you know what? If you hurt like me? You would, too. But since that’s not going to happen, I deal with pain in the best manner for me.

Yoga, my friends, would actually make that worse, but since you’re not a medical expert you don’t know how to treat my condition. You don’t know what I’m doing. You’re laying a lot of judgment down, because for some reason people in the holistic health community believe that the chronically ill are just sitting around doing nothing for their own suffering and simply want a pill to take it all away, never caring about addiction, side effects, or any other thing.

Check. Your. Privilege. Your ableism is showing.

And finally, to me one of the most important things is this concept of “right diet.” What is right diet? Vegan? Paleo? Local? Gluten-free? Grain-free? What is right for you is not right for me. As someone with multiple food allergies, food intolerances, and more than one disease that requires a specialty diet, I am begging you to examine your opinions on food in general.

Do you think that, as a chronically ill person, I am completely incapable of knowing what makes sense for my body? That’s what I hear when you say “right diet.” You know, as opposed to what poor people eat, which makes them fat, lazy, and diseased… Or, wait, is it the poor person’s laziness that makes them fat which makes them diseased? I can never keep classist food arguments straight, because I’m too busy rolling my eyes back in my head and screaming internally at people not realizing what they are saying.

I’ve been to a nutritionist, because I’m genetically at high-risk for diabetes II. This isn’t some new disease in my family. My grandmother, who was stringently organic and health-focused, had it. My father has it. It’s just something I’m probably going to get at some point, though so far so good! And I do everything in my power to delay that. That includes making sure I exercise regularly, and I eat a pretty protein heavy diet because it makes me feel better than refined carbs. The nutritionist didn’t understand why I was there, because my diet is shockingly healthy.

I also am incredibly allergic to eggs. I have a documented gluten-intolerance that is likely undiagnosable celiac disease, because I can’t gluten-challenge but have the genetics and symptoms for it. I cannot eat melon or sweet peppers without becoming violently ill. And I have an anaphylatic reaction to anything with nutritional or brewers yeast in it. I live in a house with a wheat allergy, a millet allergy, citrus sensitivities, and either a mild dairy allergy or lactose intolerance. We have 2 adults who on top of all of that should be on a low-histamine diet, and when one of our stomachs slows down (because EDS can cause poor stomach motility among other things) we have to be mindful of that as well.

We also have to have a high-sodium diet for POTS, which includes drinking electrolytes to stay hydrated on top of drinking an ideal of 2-4 liters of water a day.

Since I’m on a diuretic, my diet has to be high in potassium. Since I have IIH/pseudotumor cerebri caused by EDS, I have to have a low vitamin A diet, because vitamin A increases CSF… You know what the health food movement taught me? That white potatoes are bad for you, and instead you should have sweet potatoes… Except for me it’s the exact opposite. If I eat a few sweet potato fries, I get a headache.

If I haven’t driven my point home with this, let me be concise: What you deem as the right diet is not going to be the right diet for everyone.

Did you realize that a lot of disabled people are poor? So when you decide they’re not eating the diet you would like them to be eating, that you assume is making them sick, you’re not only making an ableist judgment, but you’re making a classist judgement as well. Maybe they can’t afford to be eating 100% organic, local, grass-fed beef on a gluten-free coconut bun.

Yeah, poverty and chronic illness sucks.

Any time my fatigue is so bad I only have the energy to fix mac and cheese, I have to shell out $2-4 for that box of processed convenience food, since it has to be gluten-free. Or I have to drain my energy more by fixing something else, which could take me out for a couple days. Or drain my wallet more by ordering food, which is basically impossible to find something we can eat out that also delivers… And since I don’t drive to keep everyone around me safe, since I could randomly go blind or lose depth perception, I have to rely on an equally fatigued husband to drive and get food.

So when you see your chronically ill friend drinking that Ensure that you’ve decided is loaded with toxic/dirty/wrong food, or you see them eating a hamburger from McDonalds, which might be the only thing that sounds good amidst endless waves of nausea? Stop fucking judging them for their food choices. Take some time to read what others are saying about the social injustice behind the food shaming diet and health food industries, because, yes, it’s there, too, friends.

You, my able-bodied friends, are only in charge of your own body. Not anyone else’s. And your “well-intentioned” judgement come off as privileged assholery to those of us who are living a daily reality with chronic illness or disability.

So in conclusion, please stop using the term “Big Pharma” if you consider yourself an ally to the chronically ill and disabled. Please?

Edit: Someone contacted me to ask if I’d change my usage of “cis-gendered” to the correct “cis-gender.”  I went ahead and changed it to reflect correct usage, and I wanted to publicly say thank you for doing so.  Not only do I consider myself an ally, but I’m also a language nerd who wants to use terms correctly.  If anyone else is interested in the explanation as to why, here is the link I was given: http://www.democraticunderground.com/10024810648

World Rare Disease Day 2015

image
Chronic illness selfie.

Today is Rare Disease Day. I was going to record a video, but ironically my rare diseases got the best of me the last couple days.

In the middle of a dental emergency gone medical, I have been to the dentist, the ER, urgent care, and the cardiologist in a little over a week. By the end of this week I will have been on 3 types of antibiotics, 2 narcotics, had a shot of morphine (or as I like to call it, worthless), and received a new diagnosis or two that I already suspected I had, since it’s related to the other 3 rare diseases I have.

I have dysautonomia and hyperandergenic postural orthostatic tachycardia syndrome, which means that my autonomic nervous system flips out when I not laying down. The autonomic nervous system controls all the things your body does that you don’t have to think about: blood pressure, heart beats, breathing, sweating, digestion, fluid regulation, and so on and so forth.  Something about the infection in my jaws and teeth along with the stress of it all set it off this time in an obvious enough manner that got me diagnosed. I’ve gained 10 pounds in the last week due to swelling. I’ve been in a constant state of tachycardia (fast heart beat) and palpitations (noticeable heart rate) along with high blood pressure as well. 

I get sweet old lady compression stockings to go with the cane I use to stay upright. My health insurance doesn’t want to pay for them, much like they don’t want to pay for an ultra lightweight wheelchair I’m trying to figure out how to get so going grocery shopping doesn’t take me out of play for 4 days afterwards due to fatigue. Let me tell you, compression stockings that go up the entire leg? Pricey. Like pair of quality jeans expensive.  Meanwhile I’m also wrestling with the state over SNAP benefits, because we can’t afford the multiple food allergy and celiac (medically suspected but not diagnosed) diet otherwise that keeps us all healthy… Which is also low in vitamin a while high in potassium and sodium.

So my rare diseases, which all but the pseudotumor cerebri my husband also has… Every day is rare disease day for us. We live with Ehlers-Danlos Syndrome Hypermobility Type, Dysautonomia/POTS, Wolff-Parkinson-White Syndrome, Pseudotumor Cerebri, multiple food allergies/intolerances, fibromyalgia, and other things I’m too foggy to remember every day.

But we manage and we smile. We have as much joy as sorrow. And we even have some good days.

I’m going to talk more about these conditions this year, because it’s part of my truth and story. I’m a disabled person. I’m not going to stop talking about it… Well, okay, I’ll probably hold off on until recovery after getting 6 teeth removed on the 10th. I don’t plan on blogging while on narcotics (except, you know, today…).

Deathwork Training Update

Slowly but surely, I am getting further along in my death midwife and home funeral certification.  However, my health is still incredibly unstable, and I’m finding myself at an average of 3 doctor appointments a week.  I’m seeing 8 specialists in various disciplines along with a cognitive-behavioral therapist, because who wouldn’t need a therapist when suddenly medical care has become a full-time job?  Yesterday I got the news that brain surgery to place a shunt in was onthe table if medication didn’t keep my symptoms stable.  And that, if I don’t go into remission, I may end up with a shunt anyway. Meanwhile, despite every doctor I’ve seen telling me what a good attitude I have about the fact I have 2 rare diseases and basically the body of a 60-year-old in my 30s,  along with my therapist saying she wished I could go to her group sessions in order to be an example of managing things in a healthy manner, I keep getting told to remain hopeful and positive I will get better by others.  One of my diseases is progressive and will actually get worse as I age.  The brain disease, idiopathic intracranial hypertension or pseudotumor cerebri, has no medication, no treatment, and very little research done specifically for it.  The word idiopathic means they have no idea why my brain is producing too much spinal fluid.  I am pretty resigned to dealing with this my entire life; it’s a better place to be really surprised and happy when things get radically better than to expect the best and have none of it go that way.  When you are 1 in 100,000 people to get a rare disease with no cure, it really is best to go with realistic but willing to do whatever it takes than to be seriously depressed and angry with the universe when suddenly you find yourself headed towards the option of debilitating pain and blindness or brain surgery that doesn’t always fix a problem.  I smile.  I laugh.  I do my best to find fulfilling things to replace my old passions I can no longer do (large-scale gardening, for instance).

I get into this here, because a lot of people donated to me and in turn allowing me to do this training.  None of this current brain-related health issue was in my life when I signed up for the educational program I’m taking, and I’m still dreadfully behind on things promised as rewards for those who donated generously to my education because of it.  There’s a lot of guilt there, because I hate not being able to carry through with it at this point.  I feel like those who donated should be made aware of where I am with all of it…  Which is not as far as I hoped to be.

However, I am pushing through with what I am capable of doing…  Reading, writing, taking the class modules I have to get through, and researching.

After NaNoWriMo in November, I will be setting out to really dig into writing a book on postmortem and funeral rites for the Polytheist community.  I plan on trying to give a summary of historical practices in various civilizations, covering body care and resources for those wishing to embark on a complete home funeral, helping the reader create a funeral that meets both their religious and secular needs inside or outside of a larger community…  Along with an idea for inter-faith help within our local communities and resources for legal questions or further help outside of a religious community.

I am hoping to have it fully ready for publication by the end of next year, though depending on how things go in my own life that’s really a pretty ambitious deadline.  It’s where I am right now.

On Spiritual Emergency, Shamanism, Mental Illness, Therapy, and Anti-Psychiatry Sentiment in the General Pagan/Polytheist Community

Alternative Title: I’m Gonna Keep Talking About This Until It’s a Generally Accepted Thing…

It happened again. Someone posted another article on mental illness being a sign of a healer being born on the Local Pagan Facebook Group with the general overarching but not direct message being that all native and ancient cultures saw it as this. Now I don’t deny that mental illness can be the birth of a healer. I’ve known too many people who have struggled with a history of it, myself included, that haven’t found themselves called to help others dealing with similar problems.

However, these articles tend to stress how society is actually the sick one, and how we need to stop shoving pills at people to fix all their problems.

Anyone who has ever been on psychiatric medication will probably tell you that pills don’t solve all the problems and most professionals are pretty upfront about that fact. Chronic illness medication isn’t meant to cure diseases. It’s meant to treat symptoms. Mental health issues fall under the chronic illness umbrella most of the time.

Today I’m not going to rant about this playing into the Noble Savage stereotype of indigenous cultures that is out-and-out racist. This rant is saved for another day.

Today, I’m going to dig through Wikipedia and summarize some ways that ancient societies handled mental illness in the past. Since we romanticize and glorify ancient cultures, we might as well take a good look at what our spiritual ancestors did for those suffering from mental health problems, right?

And then I’m going to dive into my own experience and what I’ve learned about our community, healthy boundaries in medical relationships, and my own personal journey with mental illness, spiritual emergence, and spiritual emergency.

(And yes, I am using a single Wikipedia page to illustrate how easy it is to challenge these harmful ideas that are keeping people from getting the help and relief they need.)

Here we go!

In Ancient Egypt and Mesopotamia, the Ebers Papyrus suggests lots of things from applying bodily fluids to painting to hysteria treatments involving fumigating the vagina. (Actually, I’m tucking this back, because it looks like an interesting paper.)

Ancient India tended to believe that mental disorders were spirits or witchcraft. Maybe you angered the Gods, a teacher, or other superior. Maybe your three bodily fluids were unbalanced due to inappropriate diet or something in your body generally being off whack. They used herbs, charms, prayers, moral and emotional persuasion, and emotionally shocking the person to treat them.

If you add in acupuncture, you’ve summed up Ancient China for the most part, too.

But it’s Ancient Greece and Ancient Rome where the foundation of our modern concept of mental health come from… Socrates did indeed find that there were positive aspects to madness. Prophecy, mystical initiations, inspiration, and induced hallucinations were accepted, but you notice that those things fall within controlled parameters and not just people wandering down the street left to freeze to death in the cold.

Hippocrates came around and classified mental disorders into paranoia, epilepsy, mania, and melancholia.

Then the Romans took on what they’d learned from the Greeks. Asclepiades threw out the humors theory and advocated for humane treatments and allowing those who were mentally ill to not be confined. They were treated with diet and massages. But then it kind of swung back into other types of treatment.

These cultures treated mental illness like real diseases, because they are real chronic illnesses. Even if there was a point where they noted a positive trait to it, it was still considered something that needed the negative aspects kept under control. And this is where my voice of genuine experience as someone who has completely walked through madness and managed to come out alive and stable comes in…

There are mental illnesses that can teach us an infinite amount about the way the world and our own minds work. I have social anxiety disorder that’s kept me from living life to the fullest at times, and you know what? It’s not Gods-sent. It’s not here specifically to make me stronger, but it has taught me a lot about how strong I really am. It’s caused by how I was raised, a biological propensity towards panic, and a brain disease that causes me to have sensory overload super, super easily. There is therapy for it. And when therapy doesn’t work, there is medication that helps me control the panic attacks.

I have experienced Spiritual Emergency, which is a term that the New Age and general Pagan community have picked up on. But it seems like no one has actually read the literature put out by the people who coined this term… Spiritual Emergency, the shaman’s initiation for instance, is exactly that: an emergency. It’s the point where a healthy and natural spiritual emergence situation turns into something that causes a person to no longer function in a way that is healthy for themselves and those around them. It’s a crisis. These people in spiritual emergency need help. For me it was a slow build of Bipolar II, which it took psychology and psychiatry almost a decade to catch up to what was I was telling them I was experiencing to get that diagnosis.

That spiritual emergency that came with it, though, was hell. It was a hell I never, ever want to go back to, and at the time it was happening I was not only terrified of what I was experiencing but I was also convinced I didn’t need help. Part of my fight against getting help for the mental illness component was that everyone in this larger alternative religion community told me that medication would only dampen what needed to happen in order for me to become who I was meant to be.

You know what happened while I wasn’t on medication? I couldn’t hold down a job. I dropped out of college twice. I drank in an attempt to take myself out. I ran myself into debt I’m still paying off. I engaged in all kinds of activity that was solely set on destroying myself.

And yes, I would get messages. During that time, I learned a lot about the way the Gods worked. I developed what is referred to as my Godphone. I took the steps I could on my path to getting my spiritual health together.

But my life was a mess. I would be up for days writing. I would smoke 2 packs of cigarettes a day. I would starve myself. The list goes on.

Would having a person around who could have seen the spiritual component to this situation around helped me? Yes, it would have, but only if that person was also trained in what mental illness actually is and took an integrated approach. For me spiritual emergence was tangled up with mental illness, and there was no untangling the two to be done.  That person wasn’t going to be wandering around the local occult shop offering soul retrievals and telling me that medication was only going to make this situation worse. Much like a psychiatrist not listening to my concerns and complaints about medication I was put on was also not helpful.

Eventually I got to the point where I was so exhausted, I was so broken down that I finally realized something had to change. I went years in this cycle, fighting medication. Fighting the mental health community. Not trusting them, because I knew they’d just think I was crazy…  I thought I was crazy.

But in the end society’s view of who I was or how they wanted to medically treat me wasn’t destroying me. The thing destroying me was myself. And, yes, I do believe the Gods put me on this path to become a healer, but I couldn’t walk down that path without regaining some balance. No amount of meditation, diet changes, prayer, or letting me ride it out would have gotten me to that point of balance at that point in my life. You know what did? Medication.

And you know who was waiting for me as the tornadic chaos of hypomania and mania died down with His hand held out to me?

Apollon.

With each pill I took to gain equilibrium, His voice and the other voices coming from beyond my own head got clearer and clearer. I had to relearn a few skills, but those skills came back easier and stronger than they had been.

When we moved to Missouri, I lost my health insurance and couldn’t afford the $800 a month it took for the pills I needed, but I had learned to carefully monitor my own actions. I sat down with family and came up with a plan. And I found that, at that point, things seemed to be under enough control that we were going to trial off the medication… There wasn’t much choice.  If I was going to flounder and fall, it was going to have to be in such a manner that the state considered me disabled and would allow me to be on medicaid.  Which sounds easy, but I’d discovered Missouri’s laws were more complicated than Iowa’s had been.

I struggled some, honestly, until we learned that most likely I have Celiac Disease that was causing some of the mood swings but not all. So I went strictly off gluten, and as soon as I got insurance back (Thanks, Obama! No, really!) I immediately went back into therapy to work on what I still needed to work on… Impulse control, for instance, and being kind to myself. I’m human. I am flawed. I’m not ashamed to admit that, but I’m also proud that I can say I’m working on it.

It’s that whole Maxim of Know Thyself again.

However, with that said, I also have a written emergency plan in the event I ever need it, I want to be hospitalized and medicated. We’re not in denial that this might be a rare remission, because they do happen from time-to-time. In that case, I have no problem being on medication for the rest of my life… I mean, I already am on plenty of medication for other life-long diseases, including an old school antidepressant for migraines. So why not? Because mental illness is illness. It is something many people respond to treatment with, and if they find a doctor they can work with (like any other chronic illness out there) then why are we shaming people for getting help that works for them?

Why are we scaring people away from exploring things that might help them?

Because a few people who have never actually read anything on contemporary psychology and psychiatry have decided you can’t take pills and be spiritually enlightened? Because the vast bulk of the Transpersonal Psychology literature was written decades ago when, yes, psychiatric medication sucked?

And this fear that if you actually talk to your therapist about what you believe, they’ll think you’re mentally ill? Were you aware that there are actually people out there that don’t do that? Therapists are just like any other healing professional, and you’ve got to find the one that fits you. I’ve not talked about all of my religious life with my therapist, but at the same time my religious and spiritual life aren’t causing me any problems currently. She does know, however, that I believe in some pretty non-mainstream things, and I laid it out for her at the first appointment knowing that if she couldn’t handle it then I would need someone else to work with.

I’m not saying this is an across the board thing, but if you’re going into a relationship with someone you’re paying to listen to you and help you work out your issues and you find yourself hiding large chunks of who you are… Well, it’s time to evaluate if it’s a healthy relationship or not. Granted, I know there are some really deep, personal, on-the-fringe experiences out there, and maybe it will take you some time to build trust to talk about that. Maybe it will never come. But if you can’t talk about your religion and beliefs at all… If it’s a huge part of who you are… If the person you’re talking to can’t challenge what you’re saying about the situation, not in a Hey, I think you’re psychotic! but in a Hey, this might be reinforcing this unhealthy thought pattern you’ve developed from crap you dealt with as a kid. Let’s examine that, shall we? way, what good is this person going to be in your life?  You’re paying them to help you, so you might as well give them what they need to know to help you, right?

I’m not saying stop therapy, obviously, but really evaluate if this is a you not wanting to trust a person issue (I’ve been there more than once) or a this person isn’t the right fit for me and maybe someone else out there will be type of situation. But, please, if you decide it’s the latter, stick with the therapist you have until you find a replacement, too. There’s no point rowing yourself out to the middle of the ocean only to throw the oars out before you get to an island with new ones to buy.

I really, truly, deeply hope that in my lifetime I’m able to see professionals trained who understand mystic and alternative beliefs. In fact, I’m starting to feel like that’s the overarching space my life’s work is meant to fall into that I simply can’t avoid anymore.

But I’m starting to realize that we, as a community, just don’t talk about our dark nights of the soul or where mental health and illness falls into place in our stories when we’ve been touched by it. Maybe we’re afraid of the stigma. Maybe ignorant people from all camps will say “Hey, you’re not legit. You’re just crazy.” So let’s prove them wrong, shall we? Let’s talk about this stuff! Let’s not tuck it away like it’s some weakness…

Let’s challenge those trying to act like it makes us weak. Let’s challenge those who shame us for doing whatever it takes to find what helps us, medication included.

Spiritually-based, biologically-based, or anywhere in between, do you know what the mental illness label makes you in my eyes? Fucking warrior strong.

You may be struggling, but you’re here reading this right now. I know how hard it can be. I know the veil depression puts over your eyes that distances you from those around you. I know the peaks of euphoric mania that are followed by the deathly crash. I know the terror so deeply ingrained in your mind that your body goes into flight-or-fight mode when forced to make a phone call or walk into a room late. I know what it’s like to just want to give up and to think constantly about how you’re going to get around to doing it. I know what it’s like to not know if those bugs you’re seeing or the voices you’re hearing are coming from inside or outside of your head.

But you know what I know even more about?

Having an illness is not a weakness. It’s not something to be ashamed of. Seeking out help is a show of strength. And there’s a certain grace to the person who finds themselves having to do this over and over again in an attempt to find the key that will unlock relief for them.

Let’s stop romanticizing the dangers of things like shaman sickness sending a person out into the wild to freeze to death. Or, at the very least, if we’re going to pretend that we’d be better off in tribal society, let’s look at how our society, our little religious community, treats those who are sick… We still send them out into the cold to freeze to death. Only we do it with shame and perpetuating the myths that modern medicine is never the answer. We do it with turning our eyes away and not speaking up when we’re worried about a friend who seems to be having a particularly hard time…

Let’s be warriors and fight for those who are too entrenched in their own inner-battles to stand up for themselves when the bullies come along saying that they need to get off their psych meds and go live on the outskirts of our society in order to be healers.

The noble savage myth is sickening to me, but I think anyone with sense should be able to see that someone who can’t integrate on a basic level with the society they were born into is probably not going to do too much good as a healer.

Let’s talk openly and expansively about where our own illness has taken us, because being silent about it is only going to allow this level of idiocy to keep taking hold of our people and keep others from exploring on their own if what is available to them may actually help them.

Ehlers-Danlos, Hypermobility, and Finally Finding Answers to Chronic Illness (Subtitle: Where I’m At)

I have been quiet lately. I have a lot on my plate. I am behind in life and everything I have promised to others. I am sick and tired constantly. This is a flare. The pain is always looming on the edge of my bodily perception. The bermuda grass is taking over my garden outside, and as I continue to find myself sick feeling if outside in the sun too long I’m beginning to pack away the dreams of a farm. Maybe next life.

We’ve traveled a lot in the last couple months. My husband’s mother was diagnosed with a rare form of cancer, so we have been traveling back and forth to see her as she goes through radiation and chemo. We went and visited my father in Iowa for the first time in 4 years. Travel makes me sick. I’m finding as I get older (because 33 feels ancient in this body), it’s getting harder and harder to recover from the pain and fatigue from a long car ride.

After nearly 20 years of trying to find an answer to my chronic fatigue and pain, I was diagnosed last month with benign joint hypermobility disorder. That’s an outdated term for joint hypermobility disorder, which is also likely a full-blown case of Ehlers-Danlos Syndrome Hypermobility Type.

We’d worried I had Lupus. We looked at the criteria for Fibromyalgia and nodded slowly. We found that I was genetically at-risk for Celiac Disease, and considering how we discovered my bipolar disorder was actually a severe case of gluten-intolerance we suspected that I did, in fact, have Celiac Disease. It was just that I’ll never be able to confirm it, because after being off wheat for my daughter’s food problems as an infant taught me that I can no longer eat gluten without getting violently ill. There’s also an egg allergy/intolerance thrown into the mix.

But even with the food issues worked out for myself, I was still in constant pain. I was still sick. I was finally sent to a rheumatologist with a full lab work up saying I was slightly insufficient in vitamin D and had inflammation… And a history saying that my liver freaks out any time I get put on a new medication and starts eating itself.

At the end of 4 hours split between 2 appointments and 5 rheumatologists (at a teaching clinic), I came home angry that all of my problems could be blamed on being double jointed. They might not have spent enough time explaining things to me. When I started googling, though, the final puzzle piece fell into place and I realized that they were, in fact, correct.

I have Joint Hypermobility Disorder, which depending on what expert you talk to is also Ehlers-Danlos Hypermobility Type. This means that I am incredibly flexible, which I could have sworn was supposed to be a good thing. What it really means, though, is that my muscles are weak and fatigued constantly, because they are working overtime to keep my joints from dislocating…

Because my joints dislocate or subluxate (slip in and out of place), or they do anything in between those two things. It’s painful. I’ve dislocated a hip in my sleep. I’ve dislocated my back bending over to pet my cat. My neck is so weak that I recently cut my hair, because long hair was giving me severe headaches due to the weight it was putting on my neck. I am tired all the time, because my spine compresses and causes severe, burning nerve pain up my back down to my toes.

I fall sometimes. My ankle rolls, and suddenly I’m on the ground.

EDS is a genetic callogen defect. Collagen is the glue of the body, and it’s in most of your body. Mine doesn’t work right, and because of that some days I feel like I’m falling apart. This has been going on since I was a teenager, at 14 my knees started going out. I had a doctor tell me at 16 that my sciatica was simply due to being obese and having poor posture, because, you know, sciatica is really common in 16-year-olds.

My pregnancy was a nightmare, but I couldn’t get my OB to listen to me, because she’d had a bit of back pain while pregnant and it was normal…  Except many women end up in wheel chairs and destroying their backs with pregnancy when they have this, and, oh right, epidurals?  They don’t work, because local anesthetic doesn’t work.

The funny thing is that beyond the pain and fatigue, I thought all of this was normal. Despite it being a rare disease, both of my parents have these problems to varying degrees. My grandmothers on both side had problems

With this I most likely have an autonomic nervous system problem, which causes my heart and blood pressure to do crazy things throughout the day making me feel weak, dizzy, ill, and anxious. My heart races. I find myself having a hard time breathing. Apparently this isn’t normal? Apparently it’s not just anxiety.

Apparently it’s normal for a person with EDS/JHS to be diagnosed with a million things, including mental illnesses, because doctors learn this is a rare disease they will probably never see. It took me nearly 20 years to get a diagnosis, more if you count my stomach problems that started at 9.

My husband is now working on getting his own diagnosis for EDS (I would have preferred the odds be used towards winning the lottery instead of us both having the same rare disease, thanks). Our GP looked shocked and said, “I’ve never actually seen this before. I’m going to have to research more,” when he pulled his skin away from his arm and neck to show how it stretches…  Well, after she cringed and gave a very professional “Ew.”

I don’t plan on this becoming a blog about my chronic illness, but I probably will vent from time-to-time about it. This is a personal blog, after all, and I talk about my life here. This is a huge part of my life. Now my life is filled with physical therapy appointments and starting next week cognitive behavioral therapy to help me manage the pain and anxiety that has developed due to pain and what we thought were panic attacks.

Mainly I just wanted everyone to know I’m still here. I’m still alive. I’m working on stuff for the blog this afternoon, including videos! I’m working on getting thank you notes written, but truth be told I’m slow because lately my hands haven’t been wanting to hold pens much… Which doesn’t bode well for my art. Little bit at a time. I will get things done.

More on EDS: http://www.ednf.org/
More on Hypermobility Disorder: http://www.hypermobility.org