I Find It Hard To Tell You Cuz I Find It Hard To Take

September 26, 2011 at 11:33 pm (Spiritual, Uncategorized)

Hide my head I want to drown my sorrow
No tomorrow, no tomorrow
And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
‘Cos I find it hard to take

-Mad, Mad World by Tears For Fears

I’m dying.

This is true on many levels. On the simplest of levels, all living organisms are in the process of decay, and the natural end of that process is death.  So yes, you and I, Aunt Tilly, your next door neighbor, your spouse and lovers, your pets, even your favorite plants are dying right now. It may be a slow process that takes 30 or 40 years, but it’s still happening.

I grew up with a parent who was always dying. Because of that, at a young age I took a good look at the idea of mortality, of the cycles of life and death, and the process of dying. What’s miraculous is that parent is still alive, but just like when I was a child, it would never surprise me to learn of her death. Every time I get an unexpected phone call from my sister, I have a moment where I accept that my mother could be dead.

But this isn’t about my mother. This is about me. I could tell you a couple of stories that have lead me to the conviction that I am on a timeline, a shorter one than originally expected, but some of these are still a bit too personal to share with just any ol’ stranger that happens upon my blog. I will share that I feel it in my body, when in deep meditative conversations with my physical being, it tells me that I am definitely in the process of decay. And I trust my body.

No doctor has given me some grim “you-have-six-months-to-live” talking to, but honestly, I wonder if it’s because no one knows what’s wrong with me. When we were talking about cancer, I did get a little “be prepared for anything” talk, but I’ve been prepared for anything since six months into this journey.

For the last five months, I have been doing a great deal of soul searching on the subject of death and dying. I’m a Libra, and we like to “rehearse” what we think is going to happen to us in our heads so when the time comes we have a better understanding and have already made decisions based on our projections. It’s also something that I need to do spiritually, because like a lot of people, the concept of my death scared me. As someone who prides themselves on continually pushing emotional, mental, physical, and spiritual boundaries, learning to come to terms with my own demise is definitely on that list of ‘shit I should be dealing with.”

Part of me can’t wait to die. It’s not that I’m suicidal, although I get very depressed sometimes. It’s more that my body has been through so much pain and stress that the idea that one day it will come to an end is a pleasant one. I’d be a liar if I said that getting up and being a human every day is an easy thing for me; on really bad days, I’m sure you can imagine what it might be like. Since I have a strong faith that some part of my essence will be re-created once this body is done using it, I’m kind of excited to see what that experience feels like.

On the other hand, there are parts of my life that I feel strongly attached to. I have absolutely no desire to leave my spouse, and want to spend as much time as humanly possible with him. I have put a great deal of work into my girl, and I don’t want to leave that project unfinished. There are numerous things on my “bucket list” that I have yet to accomplish. I love my ability to help people with their spiritual lives, and I just don’t know how much of that I can do from the Other Side. And I like eating and sex and touching things and hugs (sometimes) and all those other things you sorta need a body to do.

Wrapped up inside of all of this is the knowledge that I am chronically ill, and as the weird symptoms keep coming, I become more sure that I am destined to die without knowing what happened to me. I mean, it will probably be something simple like a blood clot, heart attack, or stroke; but the years of illness that lead up to it will still be a mystery. I hate that I will likely die with no closure on whatever was attacking my body. Even a renown healer shaman took a look at me and told me that Something is blocking their ability to diagnose what is going on with my body. I accept that it’s meant to be a mystery; I just don’t like it very much.

Part of my work with Baphomet as the God of Rot is facing the brutal truths about my impending death. But there’s something full of grace, of spiritual necessity, when you accept the role of the Dying Man. I can take your secrets to the grave, for starters, which makes me a great confidant. I have the ability to share this energy on a small scale, to eat away at energetic blockages, or help heal infection, or to work with cancer treatments, because my own personal energy is rife with Decay. I’ve been tasked with bringing more awareness to the part of the cycle of life that most pagans avoid – we love talking about springing from the earth, and taking in the sunlight, and the eventual harvest in the fall, but we get very silent when it comes to the grain rotting into the earth, to make it fertile for the sprouts in the spring. We talk about an Earth Mother, without acknowledging how much death and decay play a part in what makes the earth able to sustain life.

You need me as much as I need you, says Death.

Or, in better words, “There is no away,” says Lee Harrington. We talk about throwing things away, that our loved ones have gone away, but really, there is no mythical land of “Away” that is full of garbage and dead people. All of that is rotting (except for the stuff that ain’t), stinking, masses of decay that we desperately try to hide from.

So I just want you to know that I’m dying. And if my intel is right, it will be sooner rather than later. And that I’m mostly okay with that. The dreams in which I’m dying are the best I’ve ever had.


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Emergency Room as Microcosm

September 23, 2011 at 3:41 pm (Medical)

All day yesterday, I kept thinking, “This experience is exactly what my whole struggle with healthcare has been, from day one.”

So Wednesday night, I experienced a new, sharp, intense pain in my right side, approximately where the kidney is. I had a hard time sleeping due to it, so in the morning I called my medical advocate/adviser and asked her what I should do. She advised calling my primary care doc and making an appointment.

One of the reasons I like my primary care doctor is because it’s really easy to get an appointment quickly, which is a real currency in my world. (I have had to wait upwards of four months to see some specialists!) The receptionist told me I could come in that day, in a few hours. I had to do some logistical juggling, but was able to get there.

The doctor examined me and decided that it was possibly too dangerous to do this the slow and steady way. He advised that I go to the local hospital ER, which is what I was really hoping to avoid. Due to the inactive TB, every time I go to the ER they have to put me in an isolation room, which means it takes forever (and a lot of poking from my advocates) to see doctors and nurses.

But with random guesses of kidney stone, nephritis, or even the TB metastisizing in my kidney, I didn’t have much of a choice. I went, and straight to the isolation room I went. They started out with all the obvious tests, looking for “horses”* like a UTI, or a blood clot, or a kidney stone. I had a CT as well. All of this came back with no result. Once again, I am having a significant medical experience (pain, nausea, difficulty breathing) and they have no idea. In a last ditch effort looking for zebras*, they gave me yet another chest x-ray (they happen a lot when you say “TB”, although they were also looking for things like a collapsed lung or some other weird thing). In the end, they debated keeping me for observation overnight, but instead decided to send me home, with random suggestions to see my primary care again, or maybe an orthopedist (?!?).

It’s pretty easy to read that paragraph and it seems like no big deal. But as those of you who have been to a busy ER might have guessed, this ordeal took almost eight hours. I went home, dejected and still in just as much pain as when I woke up that morning.

The Gods have told me that I’m not allowed to just surrender and stop seeking out medical care – and I think my loved ones would probably disown me if I did. But it’s experiences like yesterday where I did everything I was told, and in the end got very little for my troubles. And in some ways, it only made things worse. Now I have this pain that I cannot explain or treat (my normal course of narcotics doesn’t help) and no real usable suggestion as to what to do. (I will probably make an appointment for said orthopedist if it doesn’t go away on its own in a few days, but I don’t hold any hope that it will do anything.)

This is really a microcosm of what the last four years have been like for me. I complain of symptoms, the doctors are sure it’s one of these three things, and then it turns out it’s not, and then it’s not options four, five, six, or seven either, so they throw their hands up and tell me they don’t know, and either throw drugs at me (usually narcotics) or give me a reference to yet another kind of doctor.

Let’s see. I have been seen by three neurologists, a rheumotologist, two primary care physicians, two infectious disease doctors, a cardiologist, a pulminologist, a sleep study expert, a bariatric surgeon, a pain management specialist, a hemotologist/oncologist, an endocrinologist, a gastroenterolgist, and that’s only what I can think of from memory.

I guess soon I can add orthopedist to that list.


*”Horses and Zebras”: In medical school, there’s a saying, “When you hear hoofbeats, think horses, not zebras.” It means that no matter what the situation, when first diagnosing a patient, consider the most common ailments before you start looking at more exotic reasons for the problem.

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The Test

September 21, 2011 at 7:56 pm (Spiritual)

So one day, Satan approached God and challenged Him to a little game. There was this devoted servant of God named Job, and Satan wanted to prove that, given the right circumstances, Job would curse God’s name. God decided to play along, and set a rule: that Satan couldn’t physically harm Job. So Satan killed Job’s family, bankrupted him, and outcast him from his community. When that didn’t work, Satan asked God to change the rules so that Job could “really” prove his devotion to God. God agreed, and Satan went to work giving Job a host of diseases.

If you know the story, you know how it ends – Job never turns his back on God, but he does question Him about his circumstance.

When a person is suffering, it is common to think of it as a test. I know I do, as I once frantically posted to a spirit worker email list asking if anyone knew what I had done to piss Loki off, since I was so sick and Loki had been pretty quiet on the subject. In my heart, I knew that my affliction had nothing to do with Loki, but there’s some programming (maybe because I was raised Christian?) that one of the reasons humans suffer is to test their faith.

When I think about tests, I think about walking into a quiet hall with nothing but a number 2 pencil. There’s some proctor up front, who looks pretty bored unless you make noise. You take a seat, are handed some papers and a bubble response sheet. The proctor tells you how long you have to complete the test, and then you begin.

Some tests are easy, and you finish way before the time limit. Sometimes you have to sit quietly in your chair until everyone else finishes, but the better times are when you get to leave early. Some tests are challenging, and you find yourself scribbling the last few answers as time is called. And I remember some math tests (I really, really suck at math) where you could have given me the rest of my life to finish the test and there was just no way I was going to, so the end just came and I had to comfort myself that I had did the best I could.

There was one test I took in early high school where the proctor, wanting to up his passing rate, walked around secretly giving advice to us test takers. He would look at your wrong answer and give you a look, and maybe even suggest that you look at the question again. He never outright gave us the right answers, but he did a lot of shady things to help us pass.

It’s funny, as I think about it. I think about what that teacher did as “cheating”. He clearly abused the fact that he was proctoring a test that he had a vested outcome in, and did what he could to make it look like we were more prepared for the final than we really were. (As I remember the class, we did a lot of talking and hanging out, so his worry that we would fail the test was probably reasonable.)

When it comes to spiritual tests, however, we hope for the cheating proctor. As we are afflicted and in pain, when things are more difficult for us than they once were, when we cannot access joy or happiness about our lives, we find ourselves looking to the Universe to give us a sign that we’re still doing okay on our test, that our choices are the right answers, and that we are still on track to a passing grade. Maybe we pray to our Gods that if they could just ease our suffering for a little while, to give us a break or a breakthrough, that it would prove that our experience had purpose, had some meaning.  We’re afraid of meaninglessness in our worlds of faith. I know that I scan for signs and omens that I am on the right track when I get new information from a doctor – is this going to lead to an end of my suffering?

I don’t know if it makes me lucky, or unique, or just like everyone else, but my Gods are not cheaters. I know that they are present throughout my suffering, sometimes even making their presence by my bedside known, but if they give me the answers, it will lessen my personal experience, which is the only thumbprint on the world I get to make. I’m not saying that I suffer because It Is The Will Of the Gods that I suffer, but I see my suffering as no different than anyone else’s trials and tribulations. Mine are physical now, but in the past I have had spiritual and mental afflictions that were pretty damn bad, too. I grew up poor and neglected; I struggled with mental health issues throughout my twenties; I had dedicated my life to Christ when the church found out I was a freak and kicked me out and made most of my friends shun me. None of these times were better or worse than what I’m going through now – it’s just another leg in my personal journey of life.

What I have come to hope for, and to have faith in, is to make my proctors proud. I do my best to read and re-read the instructions to the test through divination, meditation, intercession, prayer, and intuition. I accept that my test has purpose (not just something thrown at me by a substitute teacher to keep me busy while the teacher is on maternity leave), and that in the end, my passing (pun intended) will be proven by the fact that I have lived out my purpose – which is to help others grow and maintain full spiritual lives.

I know you feel like you are being tested sometimes. Sometimes it may even feel like two forces are playing a game to see if you can stand up to the challenges being thrown at you and not becoming something that you’re not. It’s easy to have faith in what you believe in when things are easy – when you’re blowing through the questions – but I think those are the times we tend to take for granted, and they don’t leave any scars on your soul. I think I am most in my faith when the test is just challenging enough – a little sweat on the brow, a little trembling of my pencil – to prove how strong I am to myself. Those are the moments that change me, that make me a better human being, that throw me into the alchemical crucible and turn me into gold. And I do my Gods proud when I continue to push forward through difficulties, and I am rewarded with moments of inspiration and joy. I know in my heart that even in the darkest moments when I feel like someone is throwing everything they can at me (and maybe even changing the rules along the way) that I make a good devotee when my faith remains strong.

That faith is a well. The more I pour into it, the more I trust that I am doing the best with the resources I have, the deeper the well becomes, the more it can hold. The blessing comes when I can share what’s in that well with others who need it, like I did when I wrote that email to the spirit worker list.


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Where We Begin: As Much of the Story as can be told.

September 20, 2011 at 7:03 pm (Medical, Spiritual)

Dying for a diagnosis. It sounds like the beginning of just about every House, MD episode. And there’s a reason I watch that show with religious fervor. If I could meet Gregory House and his team for an hour or two, I would be willing to go to the brink of death to find out what it is that has plagued me for the last four years.

The short story goes something like this: about four years ago, I started showing a variety of symptoms and started seeing a multitude of doctors to try to figure out what was happening to my body. Some of them included severe chronic diffuse pain, aphasia (the inability to produce words on command), difficulty moving my limbs, tremors, memory loss, bouts of extreme nausea, confusion, fatigue, a marked drop in stamina, unexplained weight loss, fevers of unknown origin, and probably other stuff I’ve since forgotten.

Right now my “official” diagnosis is fibromyalgia, although even the doctors know this is a crock. I do not show the recognized symptoms of that disease, but rather fall into the category of “someone who has legitimate pain issues but we have no idea why”. Without this fake diagnosis I would not be able to receive treatment from my pain management doctor, so we all play along. Other diagnoses that have been tossed around include MS, lupus, HIV, cancer, Cushing’s, and “something wrong with your CNS”. However, none of them have been seen in a positive test.

Currently, the big PITA is that I seem to catch infections very, very easily. In the last four years I’ve had over 15 different bouts of infection or disease, and right now I am getting ready to undergo treatment for inactive TB. In order to do that, I had to come off of the most effective narcotic pain killer I had found (Fentanyl transdermals) because the TB meds caused me to metabolize the Fentanyl all at once, causing a dangerous interaction. So since July, I have been going through opioid withdrawal that has been (medically) compared to heroin withdrawal, except in slower steps. I am currently “free” of Fentanyl, but am still experiencing withdrawal symptoms a week and a half later.

So that’s a little insight into part of the reason I’ve started this blog. I have a lot of friends and family who want to keep up to date with what’s going on with me, medically, and having a repository where I can write it down once and have it be accessible to all of them would be very useful to me.

However, it is a standing rule of this blog that anyone that submits diagnostic material (whether by comment, email, phone call, or personal contact) that is not a medical professional, will be given one warning before they are banned/ignored/cursed with boils or turned into a frog.  I have a great team of doctors, medical advocates, and selected people in my life who are allowed to play House MD with me. But outside of those people, I get very annoyed by people who try to diagnose me based on anecdotal evidence (“My cousin Shirley had something like that and she has porphyria”) (Which I’ve already been tested for, FYI.)  I am not interested in unsolicited internet research based on anything I post on this blog. I am not interested in recommendations for non-alliopathic treatments (herbs, energy work, acupuncture, etc).

Onto the other half of the reason for the blog.  As you may or may not know, I am a neoclassical Shaman. What this means to me is that I serve the community by providing necessary spiritual services based on my ability to communicate with Spirits, Gods, Ancestors, and the like. Let me explain a little more about my personal path of coming into my shamanism so that you might better understand.

About eight years ago, I underwent a spiritual crisis of epic proportions. During that crisis, an Entity that did not introduce itself to me said that if I agreed to do His work for the rest of my life, and to surrender my hopes and dreams of what my life was going to be like to Him, he would get me out of the crisis and onto a better life. I thought about it for three days. (That’s how epic the crisis was.) I “signed on the dotted line”, and within a short amount of time my life changed drastically. It took me a while to figure out who he was (the Norse God Loki) and what He wanted from me (to work with those who suffer from mental and spiritual afflictions, to speak hard truths, and to speak for those whom normal people would happily overlook – the disabled, the mentally ill, the genderweird, the queer, the obese, the mulitple, etc – among other things.) As time went on, I also developed relationships with other Deities. Although I consider myself primarily a Northern Tradition Shaman and have working relationships with most of the Aesir and some of the Jotunar, I also work with Hanuman and Ganesha (Hindu), Erzulie Dantor and Maman Brigitte (Vodun),  The White Lady of the Forest Fire (Clan Tashlin), and most recently Baphomet (whose origin can be attributed to many different traditions).

It is for Baphomet, primarily, that the spiritual part of this blog will exist. It was He who told me that my journey had spiritual significance – everything from dealing with disability to suffering from withdrawal to likely dying without knowing what was causing me to die – and that if I was to live up to my duties as Shaman, my devotions had to include sharing my spiritual insights on this process. It’s not just me, either. I have family and friends who are also suffering from various aliments, some of them diagnosed and some of them not, and their stories will likely pepper these pages as well. Baphomet is a God of those who are forgotten and dismissed, and nothing feels like social dismissal like being chronically ill for years, getting worse in front of people’s eyes, and not being able to give a pat answer to the question you hear most often, “So what’s wrong with you?” or “How are you feeling?”

People disconnect with you when you can’t answer that question. They don’t want to hear a half hour legacy of bits and pieces of your experience. They want to hear something like, “Cancer.” or “AIDS”.  Something they can relate to, that they can label and put in a box. Maybe even something they can raise money or awareness for, if they’re that sort of person.

And in a deeper sense, we’re all suffering. And everyone’s suffering is deep and meaningful to them. There is no great ruler or scale that says my suffering is greater than yours. Suffering sucks, it hurts and it keeps us from enjoying life fully. And I have a lot to share from my Gods and Spirits and Ancestors about how to turn suffering into an expression of spirituality.

Okay, I’ve typed quite a lot here (for me). I am hoping to get dictation software soon to make this process easier for me. (Wanna donate? Drop me an email at awesome.del@gmail.com. My birthday is next month!)

I hope you have a sense of who I am, where I’m coming from, and what I’m trying to contribute to my community (communities?) by sharing my thoughts and experiences.

I’ll leave comments open on this post, although it will be my practice to close comments on my ‘medical update’ posts to keep y’all from playing House. Play nice.

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