It’s Not About the People, Lesson 1

November 18, 2013 at 1:17 am (Death and Dying, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , )

This post has been brewing in my brain all year. I guess I was sort of waiting for a specific moment of inspiration or insight to commit it to an essay, but since my task was to contemplate what it means, not figure out what it means (both for me and in general), I’m going to share some places my year-long project for Hel has taken me.

This simple statement – It’s Not About the People – has been one hell of a koan-like puzzle for me. And merely sitting with my confusion, rather than trying to find my way out, taught me the first of many lessons that I have since tried to apply to my life.

Lesson One: Your Job is not to make people happy, or tell them what they want to hear, or do things for them so that they will like you.

I will admit, I am a people pleaser. Growing up, I compensated for my lack of charisma and attraction by being the friend who makes you happy. If you need to laugh, I have funny jokes and stories. If you need someone to help you move, I was there and brought three friends. If you need a rare-edition book for your master’s thesis, I will devote time and energy to find it. Nowadays, I joke about my “magickal rolodex” being my superpower, in that I know such a diverse number of people who also have a wide range of skills, collections, and interests, that no matter what you might need in your life, I probably know someone who has it or can help you do it or someone who will do it for you.

But these things carry a price, something that I have to stop ignoring and come to terms with. As I am losing mobility, having fewer and fewer good spoon days, and my resources are dwindling, I just cannot afford to be all things to all people. Sometimes I can’t even afford to be one thing to the right person – looking at some of my recently failed relationships, it’s obvious to me that there were parts where I just didn’t show up and engage enough. And I’m not deluding myself into thinking that it’s all related to my physical health – I’ve been pretty depressed this year and sometimes my ability to engage with others was extremely limited because of my depression. I am taking steps to at least face how bad my depression has gotten, but right now I don’t see an immediate burst of sunshine on the horizon. My counselor reminds me that sometimes the true observation is “Things fucking suck right now.”

As I explored this facet of the koan, I really began in earnest to think about and enact some much-needed boundaries in my life. There were definitely areas that were sapping my resources fast and dirty, and it will not surprise you that most of those areas reacted with the biggest and more painful responses when I tried to stifle the flow a little. There were some people/places/things that had come to expect me to jump when they called, to never ask for compensation for my time and efforts (and in some cases, even refusing to reimburse me for monetary investments). It has cost me at least one friendship, which broke my heart. But at the same time, it gave me an intense sense of clarity as to how some people define what it means to be a friend – that for some, if you’re not actively adding benefit to their life in a tangible way, you’re not worth a phone call or email once in a while.

I also had to turn this part inside out, and I will admit that I am still a work in progress on this. I had to look at how I deal with the vast amount of relationships (not just romantic/sexual, but all different kinds) I consider important and detail to myself what levels of effort these relationships need. The obvious example is my relationship with email – I have a reputation of never answering my email, or not answering it in a timely fashion. I tend to hide behind physical excuses, although they are sometimes legitimate, about my inability to sit and type for long periods of time. (I have tried dictation, but it doesn’t work as well for reasons that I won’t get into.) But I’d be a big fat liar if I said that was the only, or even the most common reason why I don’t respond to emails, return phone calls, or other forms of communication. I did a lot of meditating on the whys and wherefores about this, and two flaws I have decided to work on. One is feeling overwhelmed too easily. It would be embarrassing for me to admit how small a day’s itinerary can be before I throw my hands up and freak out. Like most people, I have days when I am more or less productive, but the days I am less productive have become to far outweigh the more productive ones.

Part of that is a honest coming to terms with how much actual energy I have on an average day. Although most people have days where they plan much more than they can actually accomplish, that has become almost a daily occurence for me. I’m either wildly optimistic about how much I can do, or I’m overly pessimistic and do very little. The problem becomes that there are rarely days where I land somewhere in the middle – once I fail to accomplish one or two tasks, I throw in the towel and spend the rest of the day goofing off. It also has the effect of beating myself up over stuff I failed to accomplish, as well as a slowly increasing backlog that becomes really overwhelming (vs. my anxiety driven feelings of overwhelm, which may or may not relate to the actual amount of stuff I’m supposed to be doing).

This leaves me in a pretty obvious quandry: If I make “make people happy” or it’s corollary, “Do things so people will like you”, my first priority; but I am coming to stark terms about exactly how much I can expect to accomplish on a regular basis – something has to give. And although in a dream world the solution would be to find the power-up magic pills in my real-life video game and suddenly have more stamina/less pain; the harsh reality in my real-life documentary is that I can’t always make people happy if their happiness is contingent on me keeping up with correspondence or doing other forms of work (especially for free – but that’s less about money and more about reciprocity).

Hel comes to remind me, or maybe just school me, that my first and most important priority is serving the Gods, and the work that They ask of me. So learning how to create better boundaries and knowing my limitations when it comes to “the people”, helps me be a better shaman and God-employee because They get my best. Many, if not all, the people in my life give lip service to understanding this, but I can probably count on fingers how many really grok how that has transformed my life. It has been difficult, because obviously what I would like to do with my life and my time is sometimes at direct odds with what They want from me. And in some cases, I have been tasked with doing the same thing over and over again until something happens (that is outside my control), and it feels downright wrong to spend time on something that has a high chance of being shoved back in my face, rather than spend time answering email and being social. But this is only one of the harsh realities of the price I paid to live in December, that although I had already forfeited my Will to Loki, that the deal with Hel included forfeiting most of my Life. This is compounded by the other, less obvious “benefit” that I have several Divine Bosses, and even a few that just Boss Me Around, and the tangible web/chains of the many oaths and Relationships I have developed over time has made me very circumspect about my own cavalier attitude I once held about accepting the offer of Whatever God Showed Interest, rather than really sitting and figuring out if I had the time and energy I would be asked for.

In short, I started acting with the Gods the way I acted with my schoolmates when I was in Junior High School. I didn’t care if you were a Jock, a Prep, a Freak, a Stoner, a Bad Kid – if you showed me the least amount of attention, I would do almost anything you asked as long as you continued to be my friend. I mean, I had more than one person say, to my face, that they really liked being my friend but they didn’t want the people at school to know (because then they would become secondary targets to the teasing/torture I got on a regular basis), and made me agree to keep our friendship a secret. I am not quite so desperate when it comes to Gods, but I know people who have been, and continue to be so. They are just so happy that Someone, Anyone is paying them attention, that they don’t really think through what the consequences might be. Loki may be showing you some attention, but don’t come crying to me if your life gets completely upended and you can’t seem to make heads or tails of anything anymore – invite a God of Eternal Change into you life, you get exactly what’s on the tin. Odin may propose marriage to you, which sounds romantic and important and satisfying, until you learn that He wants you to abstain from human relationships, or decides that you should quit your only-means-of-financial-support job and travel around the country helping the homeless and doing ritual for Him. There are lots of stories like this, and they tend to be the stories that you don’t find on the Internet – they are the ones told around campfires, or after rituals, or during pastoral care sessions.

This is where lesson 1 bleeds into lesson 2, so I will let you know what lesson 2 is as foreshadowing for my next essay:

Being a shaman means that you work for the Gods, not for your clients.

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How Do You Mourn?

October 31, 2013 at 2:23 am (Death and Dying, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , )

I read an article today about a photo-Tumblr that is solely comprised of “selfies”- pictures one takes onesself, “duckface” optional  – at funerals. Some of the images even had the dearly departed in the background. The author of the article used this to make the point that we, as a society, no longer learn how to mourn.

Historically, when a person died, they were kept in the house for a few days so people could come by, pay their respects, and mourn with the family. Death was a tangible thing, and in some cultures families or other groups of people (not professionals) would wash and dress the corpse in preparation for burial. Then, the funeral services became a thing, and once Aunt Tilly dies, she is whisked away to a mystical place where they make her look as alive as possible (if you have a viewing), or put her in a container where you don’t have to see her dead body.

On top of this, most families are wishy-washy as to how to explain death to children. There’s this express notion that you shouldn’t upset them, which seems a little odd to me. Losing a loved one is inherently upsetting, and eventually that kid is going to grow up and realize that Grandpa isn’t off having a very long nap, or is on the longest Disney vacation ever. We are so afraid of the mysteries of death and afraid of not knowing the answers to what children may ask about what happens after death.

But the predictable thing that happens after death is mourning. Even if the person who died isn’t someone you were personally close to, knowing that person won’t ever make another movie or write another book or show up at Christmas dinner ever again is a sad thing. You’ve invested some amount of energy into that relationship, whether it’s your father or your favorite musician. Knowing that you have to move forward in the story of life without the unique contributions that person, that relationship brought to your life and the lives of those around you can be a hard thing to face. Of course, on top of that, it calls into question our beliefs about what happens after death – whether you believe they’re just a decaying food source for the earth or drinking flagons of mead in Valhalla – I know that every time something ends, I wonder what happens to the entity that was.

This goes even further into our every day lives, because it’s not just people we love who stop existing in the form we’re most accustomed to. You might lose a job you legitimately loved, or have to leave the town you grew up in, or decide that your relationship is no longer working and needs to end. Perhaps these things, too, have some sort of afterlife? Maybe you start to collect photographs of your hometown, or write emails to former co-workers, or in some other way try to keep some energetic tie ennervated even though it isn’t as direct as it once was. I know that every so often, I google ex lovers just to see what they’re doing with their lives, what happened to them after they were a significant part of my life. I notice if they’re still listening to that band I introduced them to, or have kept the hairstyle I told them was sexy. I like to know that I’ve had an affect on them, even though our connection is severed or different than it was.

But when things, people, places, situations, come to an end, often we have no idea what we’re “supposed” to do. We feel confused and lonely – and that’s unfortunate. My family, being both Irish and WASP-ish, was one where you did not engage in big shows of emotion outside of the family house. No matter what was going on in life, once you walked out the door you were happy, healthy, and well-adjusted. So when we rushed to the hospital because Mom was sick, or when my father sat us down and blamed each one of us individually for why he was leaving (even though he came back about 5 hours later), I was taught that you didn’t discuss this to outsiders. Eventually, an exception was made for therapists, and maybe pastors, but that’s about as far as it went.

So personally, I never really learned how to mourn. There were no rituals or ceremonies that gave us free space to truly feel and express our emotions – maybe a tear or two at a funeral, but everyone looked askance if you started to sob – and if you chose to redirect your sense of loss by being sullen, difficult, rebellious, or detached, that was grounds for punishment. In the end, I was shown the only response to loss is to bottle it up and wait until you saw your therapist.

It’s only been the last few years that I’ve really started thinking, writing, and talking about emotional catharsis around mourning. I’ve had clients and friends come to me after someone they love has died, feeling lost and confused because they feel like they should do something, but they don’t know what. Sometimes, or especially, it’s after the funeral is over and they’ve had a few days to really think and feel and process, and by then you feel like you lost your chance because that’s what the ritual was supposed to be for. When my father died, I did the majority of the planning and execution for his funeral, so for me, it was difficult to dig deep and really figure out what I was feeling and what I wanted to do with those feelings, because I was busy finding the right music and figuring out where the funeral would take place and writing programs and delivering my eulogy.  It wasn’t until months later that I realized I had truly shut off any sort of emotional response to his passing, and I found myself feeling guilty for not “doing more” to memorialize him, and to process the complex emotions that I was having.

This is one of the reasons Samhain is one of my favorite Pagan holidays. It is a time and place where people are encouraged to truly mourn their dead, in whatever way feels right, and allow themselves to have whatever emotional response they need. And there’s no rule that says you can’t mourn your dead every Samhain – you don’t just have to do it the year they die, you can do it as long as you want, as long as you think you need, for decades if need be – in fact, that’s the way the holiday is set up. You don’t have to bury your loved one once and then move on in life; you can ritualize their passing, and the grief associated with that passing, for as long as you need to.

Another way I have incorporated open expressions of mourning into my life is by volunteering to mourn for others. When a friend or family member suffers a loss, I usually offer to mourn for them when I do my Rituals of the Dead. My “death altar” has items, pictures, tokens, and the like of friend’s fathers, mothers, high school buddies, as well as some from people I’ve personally known. And when I am feeling overwhelmed with sadness, as I do sometimes while dealing with depression, I put on all black and take out all the tokens and cry. I say their names, if I know them, and I hold their tokens close to my heart and just let out unadulterated grief. I figure if I’m going to suffer from uncontrollable crying jags due to depression, I might as well put them to good use.

I also build little mini-altars for my dead, by first burning a seven day candle until it is completely evaporated, usually lit as soon as I hear of their passing (or if they are very close to death and all indications say that’s what will happen). When the glass container is empty, I gather small items that make me think of them – a ticket stub from a movie we saw, a drawing of a brand I gave them, poems that make me think of them, etc – and fill the glass. I’ll also use “traditional” things, like rue, dried rose petals, lavender, fall leaves, and anything else that’s somehow connected with the death/decay/mourning part of the cycle. Sometimes I leave these at the gravesite, or I bury them somewhere appropriate, or give them to someone who is suffering and might find comfort with it. And sometimes I leave them on my altar, a way to create and maintain a connection with them (either symbolically or energetically).

What’s great about these things is that they don’t require you to have any one singular belief about the afterlife. This is not what these rituals and symbols are about. You can still write your loved ones letters after they have passed and still believe that they are mere wormfood. Or you can rest in your certainty that you have no friggin’ clue what happens to us after we die, and burn a candle in someone’s honor. These things are about you, your grief, your loss, what you need to do to allow yourself a significant moment to fully embody and express what this feels like to you. They don’t even have to look like traditional funeral tropes – if your friend was a drag queen, you can get dressed up and dance to Queen, go to a local drag bar and tip the queen that you think they’d be most impressed by, or maybe even get your ass on stage and do a drag number dedicated to your friend.

You can also use these things to help when the thing that passed was not a person. When my marriage ended, I found a piece of jewelry that was handmade for our wedding, and I placed in on the “death altar” while I spoke aloud about the end of my marriage, the death of the dreams I had when we got married, and the death of myself as his spouse. When I leave a house I have bonded with, I usually keep a token (most often a key, as I like keys) and when I feel nostalgic or sad that part of life is over, I’ll take it out and let it direct my memory fugue. Heck, there are still girl clothes I own that I can’t get rid of, because they’re too sentimental to me, even though I’ll likely never wear them again.

Samhain can be a time for these kinds of grief, too. It is the symbolic end of the agricultural cycle, where the crops have been harvested and now the plant matter left over is used to seed and fertilize the soil for next year’s harvest. We get ready for the dark of the winter by recognizing that which has served its purpose and needs to metamorphose into whatever’s next for you. You can use this symbolism to quit a bad habit, end a hurtful situation, let a part of you go that no longer serves you, recognize who you used to be and prepare for who you are to become. You can take a moment and allow the sadness of all the changes that have happened in the last year (or whenever) to flow out of you, in hopes that when you are ready to meet new and different experiences, you can draw from these memories without feeling the pain and loss. You can make Grandma Jo’s apple pie for your friends without sobbing through every bite. You can tell funny stories about when you used to work a corporate job, or when you used to be a girl, or when you used to only date boys. This is a great crucible to allow embarrassing, sad, hurtful, frustrating, and hellishly difficult situations become fodder for those stories that are only funny in retrospect. Or maybe use it as a story line for your novel, or inspiration for your next play, or to create a new RPG character.

So this is what I leave you with this Samhain: it’s okay to grieve. It’s okay to not know how to mourn, and to just open yourself up in a place you feel safe to do so, and sit with your feelings. Express them. Find rituals and symbols that facilitate this unburdening. Tell funny stories about your dead. Get rip roaringly drunk on your granddad’s favorite whisky. Go to the restaurant where you had your first date with your ex, and order the same thing you did then. Cry in public. Go visit a cemetery, find the oldest grave, and leave them an offering. You don’t need anyone’s permission to feel whatever the hell you feel about people and things and situations that are no longer part of your life. It’s also okay not to feel sad about these things – maybe your parent was abusive, and with their passing you have a better sense of safety and support. Maybe that job was holding you back from starting your own business, or living in a state you’d prefer. Mourning doesn’t always have to be all black lace and tissues – sometimes it’s a selfie taken in the funeral home’s bathroom.

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What about it?

February 18, 2013 at 4:03 pm (Chronic Pain, Disability, Living With Chronic Illness) (, , , , , , , , , , , , , , , )

“What about Dying for a Diagnosis?” Winter asks, in that way good friends, or sometimes shamans, ask someone about something they’ve been overlooking for longer than they should have.

“I know, I know…I just don’t know what to say. ‘Things are going the way you’d expect’ doesn’t make for an interesting blog post,” I reply.

I’ve made several fairly popular and viral posts over at Sex, Gods, and Rock Stars lately, and have three or four posts sitting in my word processing program, unfinished. (I tend to jot down ideas as they come to me and then develop them in small segments until I reach a stride in my writing and finish a post. Sometimes, either possessed with a strong opinion or a timely matter, I will conceive and write an entire essay on the same day, but most of the time I work in starts and stops as spoons allow.) But none of them are for here; and there are more reasons than merely not having anything earth-shattering to say about my current roost in my medical journey.

And it’s not untrue: things have slowed down incredibly since the surgery. I assume weekly posts that entail mostly of “I’m still healing, still dealing with post-op pain, and the doctor visits have been pretty routine.” Other than one of the surgical drains developing a crack and having to be removed at home (by me, not knowing that there was a significant amount of tubing inside my body – I just knew that the drain was no longer holding suction (which is how it works) and the stitch had blown, so it was going to fall out eventually anyway) and a bit of swelling around the center of my scar that I plan on having checked out by the surgeon’s office sometime in the next week or two, there hasn’t been a lot of dramatic action in our hero’s story.

It’s also not entirely true, either. My chronic pain has shot through the roof, with more days finding me in bed doing the bare minimum I need to get through the day than days where I spontaneously decide to do something like catch a movie or go out on an errand. I was also doing something I call “spoon banking”, where when I have a commitment coming up that will require much more energy than normal, I will spend the week(s) leading up to it getting extra rest and being judicious about what I really need to do, in the theory that if I don’t use the energy now on less important things, I will have (a little?) extra when the time comes. I attended my first teaching gig/event in six months this past weekend, and I think that the practice paid off, as it really wasn’t until Sunday evening when I started “feeling it”.

It was good to get out like that. Not just because it was an important personal step in healing from the separation, but because too much introversion makes Dels depressed, and depression comes with its own tangible consequences in levels of pain, sleep disturbances, and mental health symptoms that only muddy the waters in terms of figuring out what the heck is wrong with me. It wasn’t easy, as it was one of those events where I felt like I was running from one thing to another, rather than leisurely enjoying my first large-scale test of my constitution by giving myself liberal amounts of rest between commitments. It’s a side-effect of being one of the programming director’s right hand men as well as his roommate; should something come up where he needed someone with skills I possessed to fill in, it’s hard not to turn to your lovers and say, “Um, hun, is there any way you could…” Of course, this is not how Winter tends to ask me to do stuff: it’s more like, “Dammit! I still can’t find someone to invoke Water or Fire at opening ritual! And it’s in two hours! What am I going to do?” And like most decent people, if there’s anything I can do to ease his stress and make him feel good, I’ll do it. So my “workload” at the event shimmied up from teaching two classes, to three, to also helping produce a ritual, to being in a second ritual, to judging a contest, to helping him find other people to fill in where I couldn’t, and so on.

But this entry is not about that. It’s about my avoiding this blog, and knowing damn well that Baphy only let me start Sex, Gods, and Rock Stars if I promised not to forget that this was my first and most important commitment. It doesn’t help that I was offered a book deal last week, a collection of some of my more spiritual blog entries, and when I submitted links from both SGRS and Dying for a Diagnosis, most of the DfaD essays were relegated to the category of “Cool Things Del Has Written”, which was to say “Not Really Meant for This Book”. Now, I’ll say that the publisher has offered me a few options, including providing formatting services should I want to put out a collection of blog entries that fit this category (but not carrying it under their watermark), and I find myself once again feeling like I may be neglecting this blog, not just in the writing sense, but also in the sense of it being considered part of my voice on the Internet (and beyond, when/if the book(s) come to manifest.

It’s also true that when I was praying about whether or not I should (or could) start the second blog, I bargained that whereas reading about my frustrations with the health care machine and/or my funeral arrangements and/or the spiritual revelations being chronically ill has given me weren’t exactly going to get me international stardom (or many blog subscribers – I had always assumed that the majority of DfaD’s readership was made up of people who already knew me, plus a smattering of other spiritual folk suffering from chronic conditions who found solace in what I had to say on the subject), SGRS was much more in my personal wheelhouse. I already have a reputation and/or following from my vocation as a kink and spirituality educator, as well as a shaman and spirit worker, and the bargain included the idea that once people found SGRS, they might wander over here to see what else I was writing. And sometimes that’s true; but I definitely have twice as many subscribers on SGRS than here. When a new post goes live here, I get something like 150 people clicking links on social media to see what’s up; on SGRS, it’s almost double that.

It’s not surprising; there are many more people interested in, well, sex, Gods, and rock stars than they are about death and dying. This blog is much more personal, and so it may not be of interest to those who don’t know me personally. But it doesn’t help when I use my essay-writing spoons on developing things for SGRS and only waiting until something major (good or bad) happens in my life to blurt out something on DfaD. I could very well be doing more research, thinking, and praying about the spirituality of illness, pain, death, and dying; which would, in turn, inspire me to write more essays here that aren’t so reliant on knowing the particulars of my medical situation or my history with terrible surgeons/lazy doctors/pain management techniques/etc. In fact, I felt bad when I saw that a small handful of people, upon seeing that I had a new blog with much snazzier and less agonizing essays on it, unsubscribed from reading this one in favor of the other. I’ve also seen a decline in how many people bother to click on a social media link to read what’s here, whereas more of them are inspired to give me a few moments of their Internet browsing time when I’m writing about spirit work or devotional practices.

It doesn’t erase the fact that I still don’t have a diagnosis, after almost eight years of suffering. That one of my primary spiritual identities is that of the Dying Man, the person who speaks for those who are much more aware of the limited time we have on this planet, and the messages we desperately wish those who patently ignore this impending deadline (ha! pun!) would pay attention to. I’ve had “The Five Top Regrets of the Dying” essay a friend emailed to me sitting in my bookmarks for probably a month now, meaning to write something about it for DfaD, but instead I’ve been spoonbanking to go to a spiritual kink event and enjoying the blush of a book deal.

What it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave behind will only be linked to the fact that I’m chronically ill, when in fact I’m a much more multifaceted and vivacious person who just so happens to also be chronically ill. It lets me taste this feeling of being a rock star, even while I’m being pushed around in a wheelchair and sleeping rather than partying late into the night/early into the morning. It comforts me, and those around me, to know that all the information and experiences in my head will be passed on to the next generation, so they won’t find themselves having to rebuild a modern form of shamanism/ordeal mastery/spirit work/ritual creation/etc from the shreds of those who were too sick to take a moment and write it all down. One of my mentors and friends, Raven Kaldera, churns out book after book, not taking any time to promote one or the other for very long, because he too feels this need of getting all the information/experiences out there before his chronic illness takes him (or, since we both believe in the concept of being able to communicate after death, at least makes it harder for us to get the point across).

So here’s the skinny on what’s going on with me medically: I have noticed that I am losing weight at a scary rate again; not only the 40lb weight loss I had on Dec 28th, but more than that. And yes, I’ve gotten my handful of “you look great” compliments, and it’s hard to sift which ones mean “You look really good for someone who had major surgery a month ago” from those that are really saying “You look thinner, and thinner for you always means healthier, right?” I’m still wearing supportive garments over the surgical area, although now I do it more when I’m going to be super active or if my abdomen hurts, rather than every day. There’s a growing swelling around the center of my abdomen that is causing the scar to heal inverted (dipping inward rather than keloiding), and I’m going to see Dr. Sacks about that sometime very soon.

My chronic pain has been a devil to me, and my muscles have been locking up, misbehaving, or cramping painfully much more often than they did prior to surgery. My pain doctor was…I was going to say “less than thrilled”, but it was much more like “really pissed off”…at the drug combination I was given by Johns Hopkins (although I did mention that JH tried to contact his office many, many times, both to get his consult on what to give me, as well as to secure that it was okay to release me on that combo, to no avail). And it’s not helping as much as you’d think. I mean, it is helping with the surgical pain for the most part, but my chronic pain eclipses it. I’m very worried, because there are three tiers of pain management – think of it this way: there is “have some occasional Vicodin for when things get really bad, but mostly rely on NSAIDs to get through it”, there is “okay, here is some OxyContin, and have this other narcotic when things get really bad” (which is where I’m currently at), and then there’s “We need to start talking about permanent pain management options, like implants or lifelong narcotic plans”.  Basically, I’m at the place where if I get anything stronger to help with my pain, it will be considered going from tier 2 to tier 3, and there’s nothing above that. So if I accept going to tier 3 now, if things get worse as I age, or if I grow a tolerance to the tier 3 treatments, there’s nowhere else to turn but learning to accept a very painful reality. So there’s really nothing he can do to help manage it, except offer up lifestyle changes.

I am looking into getting a mobility scooter (y’know, rather than a Vespa) in hopes that by the summertime, where I do a lot of events at a local campground, I will be able to get around independently rather having to rely on golf carts to get around. (Renting a golf cart just for my own purposes is rather expensive, even just for a weekend, and hoping that one that is being used as the camp-wide “taxi” will get me around in a timely manner has been..less than optimal, as a teacher/presenter/busy person. There are also places a golf cart isn’t allowed to go, that I’m hoping I may be able to access on a personal scooter.) It will also mean that I won’t need someone to push me around unless wherever I’m going makes bringing a scooter with me impractical or impossible. This weekend really drove home how dependent I am when I’m using a manual wheelchair I can’t self-propel; twice I was trapped in my hotel room because the person I relied on to get me around was unable to do so. It wasn’t their fault – in one case, poor Rave had been running herself ragged and really just needed a nap, which was completely reasonable – but it is a somewhat terrifying feeling when you really want to go somewhere but you can’t do it because no one can help you. Having a scooter would make both the camping events easier, as well as the hotel ones, as the model I’m looking at is built to handle both. I just need to hope my insurance will cover it – which it probably will – and I can get it settled in time.

I’m also thinking about alternative forms of pain management, but it’s hard. I really feel that acupuncture didn’t help, and the therapist I was seeing is someone in whom I have full faith in their abilities. I’ve been told that sometimes you need to shop around to different “schools” of acupuncture (there are several different techniques), and maybe a different one would be more useful. I’d give my left arm to find a massage therapist, but as I’ve said earlier, current none will treat me because of the infection issues. (Which I still find incredible on a long-view basis – since all the ones I spoke to, I told I would just have to rely on amateurs who were willing to rub my muscles, and who wanted to learn better techniques so they could help, and they were fine with that, but they weren’t willing to work with me professionally – but I totally get it from a smaller-view, as it was a ‘cover your ass’ move on their part.) I’ve been working on learning some basic stretching exercises, and moving around a little bit each day with intent, in hopes that maybe something like chair-yoga or chi-gong might be useful in loosing up my spastic muscles. It’s just difficult because I’ve tried so many of these ideas before, in a variety of ways, and they’ve never done more than given me a few hours relief, if that.

Okay, I’m out of blogging spoons now. I’m half-slumped over and my hips hurt from sitting upright. But there, Winter and Baphy, I’ve written a Dying for a Diagnosis post. Now let’s just see if I can keep finding interesting things to say.

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Remote Support for Surgery: Part II

December 27, 2012 at 12:12 pm (Death and Dying, Living, Spiritual, The Panniculectomy) (, , , , , , , , , , , , )

This is for people who are more inclined to working with Deities and spirits rather than physical healing.

Here is the core of the visualization, written by my friend Hugh:

INTENT:
to convince Her that Del can, will, and should be healed and strengthened in body and in spirit by this process (making him more useful to Her on both sides of the veil), and that his work while embodied has been valuable and effective, and will be supported by his tribe. This is something to be laser-clear on, and should hover over/pervade everything.

1. Ground, center, create sacred space. Do whatever you do to get into a prepared and safe space for working.

2.Visualize the lock and hold the image in your mind throughout the working. I’ve put the pic up on Flickr for reference: http://www.flickr.com/photos/19489165@N00/8299095150 I will have the physical lock with me. Start the chant I came up with earlier and keep it going through the working if possible:

This is the lock and Del is the key
Safe is what we need him to be
Safe return to flesh and bone
Safe return to hearth and home
We need his work, we need his art
We give him aid from hand and heart

3.Respectfully address/invoke Hel.

4.Visualize the rune Ehwaz and the journey that Del has taken and is taking (both spiritual and health-wise).

5.Visualize the rune Ansuz and the ordeal/trial that Del faces.

6.Visualize the rune Sowilo and the valuable and powerful things that Del can do only if he is incarnate in a physical body. If he’s done such things for you or friends/loved ones/etc. in the past, that’s good to include.

7.Visualize the rune Fehu and what you are willing to do to support Del’s Work; how you will help Del to want to keep living and do the Work in spite of everything.

8.Cycle back to step 2 as many times as needed.

9.Thank Hel for Her time and attention; release sacred space and ground and center again. Do whatever you need to do to come back safely.

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Remote Support for the Surgery, Part 1

December 25, 2012 at 12:45 am (Living, Spiritual, The Panniculectomy) (, , , , , , , , , , , , , , , , , )

There are two things happening to me on the 28th; on this side of the veil, I’m going through the physical act of having a risky surgery. On the other, I’m going to be facing a challenge about whether or not I really value this body and life I have been given, and whether or not I am willing to commit to making my Job my first and most important priority. (And for my community and family of choice, the second part is about committing to being of assistance and support in helping me do what I need to do, as well.)

Because these are two fairly different goals (surviving the surgery vs being able to move forward doing my Job), I’ve asked two separate priests to construct rituals/visualizations that people can participate in. These are the same visualizations that will be lead in the hotel room we’re calling home base during the surgery, and it will be happening around 10am that day.

Part 1, written by my friend Raven, is for those who feel more comfortable sending energy and Will towards making sure my body survives the surgery. She asks that you use this bindrune as a focus:
bindrune

This is what she writes:

Restoring The Temple

Basically, We are focused on strengthening the body to endure and survive the surgery, and helping
create the best “vehicle” for Del to continue on with his life in. We are the team who had found the
rundown temple/humfour/peristyle/stone circle/church, and wish to restore it to functional sacred
service.

The sacred structure must be cleansed. That which is harmful or rotted must be removed, and the
structure must be repaired and shored up.. it must be made strong so that it can endure and last to fulfill it’s purpose. It must be solidified, from the ground up… made free of what does not belong, and made ready to receive back its spirit.

Whatever faith-path one practices, the idea of a place that is sacred is not an alien one… it gives us something communal to work together on.

When I built the bindrune, my partner, looking over my shoulder, said “That looks like scaffolding”, and
when he did I knew I had gotten it right. The bindrune can be carved into a candle, inscribed with ink,
drawn with chalk, or merely held in mind.

A word of caution to those who may not be familiar with bindrunes:
Please do not ADD other symbols to this bindrune. If you wish to use other symbols as additional foci, like pentacles, crosses, veve, etc, have that symbol separate from the bindrune. Adding to a bindrune can “accidently” add in runes you did not intend, so of which might be at cross-purposes to this working.

In addition, I wrote some elemental correspondences for the various challenges I face during the surgery and recovery:

1. My heart. (fire) I tend to have low blood pressure when I lay down, and even slower when under sedation. I need it to beat strongly and regularly, but not so strong as to cause excessive bleeding.

2. My lungs/breathing. (air). I have sleep apnea, and also laying flat on my back makes it very difficult for me to take deep breaths. Also I have a mass in my lung, and there’s some concern it could cause a blockage at the wrong moment.

3. Fluid cross-contamination (water). With all this pus and old blood and infected tissue, there is grave concern that in the process of getting rid of this crap, some of it will leak or osmose, possibly causing a more systemic infection, or Hel forbid, cross the blood/brain barrier. It may sound like a remote possibility, but three different doctors have stressed how dangerous this could be.

4. Immune strength (earth). I have a weak immune system, obviously, because that’s how I got here. I need my body to be strong enough to survive the shock to the system of losing a very large removal of tissue and mass – the amount of flesh/fat they plan to remove is about equal to losing an adult leg from the hip. I need my immune system to keep me alive while the rest of my body adjusts to the loss, and then I need it to keep me from picking up new infections while the wound heals. I also need the healing process to move at a healthy but quick pace…I really don’t want to spend
more than a month in the hospital, but if the going is slow or challenged…

Oh, and 5. The surgical team. Dr. Sacks (plastics) is the lead surgeon. Dr. Rushing (aka Dr. Awesome)
(general surg) will assist. Dr. Haut will oversee my convalescence. Two of my favorite nurses on
the surgical floor are Pearl and Ashe.

Finally, a word about Reiki. I’ve written before that I do not react well to Reiki. However, I know it is a healing modality that many of my friends and acquaintances are well versed in. I would ask that if Reiki is what is most comfortable to you, that you focus on sending it to the people who will be the most active in supporting me – namely Rave. Wintersong Tashlin has built a “redirect”, so if someone who doesn’t know about my Reiki thing, or who inadvertently sends it to me anyway, it will bounce off of me and go to whomever is wearing the receptive amulet. So if you don’t know who in my team might need it the most, go ahead and send it towards me and it will be redirected to whomever needs it at the moment.

I will try to post Part 2 soon, which will deal much more with Hel, the Norse Goddess of the Underworld, and is a little more complex. I ask you to choose whichever visualization/ritual that is more attuned to the sorts of practices you are used to; failing that, prayers are always a good choice. You can pray to whatever Deity you typically work with, or to Loki (in order to be compassionate about the contract negotiations), or to Hel (to allow me to return to Midgard to continue my Work).

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Assaulted by Gratitude

November 29, 2012 at 2:44 am (Living, Spiritual) (, , , , , , , , , )

I tend to be a pretty misanthropic person. I’m incredibly jaded when it comes to the sweetness of humanity, and in my work as a shaman and an ordeal worker, I tend to see the parts of people that don’t really emphasize their, uh, better qualities. I’ve also been through a lot of experiences, especially recently, that could easily make me give up on other humans and go live as a crazy cat gentleman somewhere in the midwest. I’ve been attacked, both physically and emotionally, just for daring to be true to myself and to express that to the world. I’ve had places I thought to be safe and accepting, turn out to be viper’s dens of backbiting and lack of consideration for those who are hurt or outcast by their thoughts and actions.

In short, life has given me every reason to sit on my front lawn and shake my cane at the youngin’s.

And yet.

Every day this week, there have been deliveries from Amazon. Today there were five packages in a neat little stack on my porch. I get updates from Rave about how generous my friends have been, individually and communally, in response to my request for aid. People have shown such kindness and willingness to be of assistance in ways I would never have dreamed. I think when Rave saw the initial numbers on WePay, she almost passed out.

I was struck with this feeling. It feels foreign to me, this odd sense of a weight being lifted off my chest, of feeling like things are going to be okay, even if just for a minute or two. That if I was every stranded at Tijuana at 3am, I could find someone who would pick my broken ass up and take me home. I was literally assaulted by gratitude.

I almost feel like there’s really no way to express this immense sense of connection, of thankfulness, of reassurance; if you’ve ever been through a divorce, you know that there is this very normal period of feeling like not only are you no longer loved by the person you thought loved you unconditionally, but as your friends all take a step back and try to figure out their own responses to what happened, you can feel kinda abandoned. I know this feeling well, as unfortunately this is the third time I’ve been in such a situation. (I’ve only been married twice, but in between I had a long term relationship that might as well been spousal, that also ended abruptly by me being dumped.)

It was hard for a while there. I honestly didn’t know who I could trust. I reached out to someone, just to talk, only to get a whip-fast response that they were not interested in hearing negative things about my spouse or his new poly family, and if that’s what I wanted I could take it elsewhere. I don’t know how to explain to them, or anyone else, that it’s basically impossible for me to discuss the separation without speaking my truth, and obviously that truth includes negative things about my spouse, because if there was nothing negative to say, the divorce would be a somewhat random event, no?

And so I circled the wagons. I only really spoke to those closest to me, the ones I knew had my back no matter what. I didn’t reach out much beyond this safe space. It didn’t help that the STBX was repeatedly telling me that we had shared friends who were telling him what an awful, terrible person I was and how wonderful it was he was rid of me. I had no idea who these “friends” were, so I couldn’t tempt fate by accidentally taking one of them into my trust.

I am also not one who easily asks for help. Ask Rave. I can be downright annoying, trying for ten minutes to do something she can do in less than one, but goddammit I want to do it for myself. Sometimes that’s important, and absolutely the right thing, but sometimes it can be almost ridiculous. Watch me try to propel my current wheelchair – it’s a great visual example – the one I have is not meant to be self-propelled at all. And yet, I will frequently bat her away and try to do it myself, only getting a few feet before I give in and let her push. I know this, and yet I keep doing it over and over again.

I didn’t want to ask. I was terrified of checking the website and seeing nothing. Proof that my deepest fears were true, that I didn’t have anyone I could count on beyond my tightest circle of family-of-choice. But I got to the place where I didn’t have a choice – there was just no way we could do the things we needed to do without help.

And the help, she poured in. Not only were we shocked by how much, but from whom. People I haven’t seen in person for years, sending gifts of love. People who have very little of their own, giving a portion of what they do have. Volunteers coming out of the woodwork to take on tasks or projects, like moving my piano so I don’t have to hire professionals, or finding a masseuse to donate a massage to me because it would help. People I don’t think I’ve ever had a real, significant, out-of-LARP-character conversation with. People I don’t even know their real names. People who have already done so much. People I haven’t ever met. People’s mothers and sisters and friends. People I’ve only corresponded with on the Internet. People who read my blog. People who heard about the situation from someone else and decided they wanted to help. People we don’t even know who, because the gifts came with no indication of their sender.

And it’s timely. I am holding onto this surge of love, of support, of caring, as I prepare for my surgery. I know not everyone can be there in person, but I consider every single person who has come to our aid to be there in spirit, one way or the other. Without you, I wouldn’t be able to march forward, face what the future holds.

There is still time. There is, unfortunately, still need. Although we have seen an outpouring that we never expected, we still have needs that have not been met. We need to locate a place to live, and have enough money to pay first/last/security. We still need lots of wound care supplies for when I come home. We still need a little more to help out our friends who want to come visit, and need gas money or airfare in order to do so. We, by no means, are asking for more than you can give, but maybe you can send out a message to your friends? A tweet, a status update, an email to those you know with an open heart?

But for now, I am grateful. More grateful than I thought possible. I’m sitting here wearing a shirt, pants, underwear that were all gifts. I smell of lotion that was a gift. I’m drinking tea that was a gift. I’m about to lay down and go to sleep with a pillow that was a gift. I am blessed. Everything I use or touch or see that came in because of our clarion call, is a reminder of that blessing.

And it drives me to get well as best I can, so I can get back into my community and do more good works. Help more people with their spiritual woes. Write more meaningful blog posts. Do more volunteer work. Do more to make my Gods happy, to fulfill my Purpose-with-a-big-P, to bring happiness and peace to everyone I touch, one way or the other.

I am blessed.

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Looking Towards Surgery: The Plan

November 15, 2012 at 7:43 pm (Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , )

I am happily writing this post from the comfort of my bedroom at The Squat. I was discharged today after my “two to three” day stay that was actually six. But a lot of good was done in those six days; the abscess was repunctured and all of the infected fluids that had collected inside was drained out and cultured. I found out definitely what kind of infection (or at least one of them) resides in my pannus and was given a strong antibiotic that will help clear up some of the immediate threat. I was able to start my course of Isoniazid while being observed in a medical setting to make sure I didn’t have any negative reactions to it; and I got a much better understanding of what I face when I go back in the end of December for my panniculectomy.

The biggest goal between now and then is to keep the infection(s) as low as possible. It’s unlikely I will be completely infection-free before the surgery; after all, that’s a big reason for the surgery, to remove not only the pockets of abscess, but all of the infected and necrotic tissue that has built up in my belly since the hernia repair in April (and who knows, maybe before). I have been chastised to take the bedrest “suggestion” much more seriously, so other than some low-key social gatherings (like going over to a friend’s house for Thanksgiving) I will be spending the majority of my time in my bedroom being a big ol’ slacker.

I not only have to go to a few follow-up appointments to make sure the infections are doing as well as they can, but I have to see a pulminologist to assess my strengths and weaknesses where a long surgery is concerned. I want to get my daily life in a place where I can convalesce for a month or more at Johns Hopkins without a lot of worries back home. This includes doing what I can to help Rave get the search for a more permanent place to live into full gear, getting my meager belongings that are here ready to be moved in my absence, and making sure that I have little to nothing to stress about so I can fully focus on getting better.

In an odd way, I feel that this unplanned trip to JH turned out to be a very good thing. I was feeling a bit at loose ends about the upcoming surgery since there was really nothing planned until my pre-op appointment with the plastic surgeon on Dec 14th. It gave my doctors a chance to think and experiment with pain management post operatively that really takes my (somewhat high) tolerance for opiates into consideration. (A regimen that actually brought the pain related to all of this down from a 7 to a 4 on a regular basis, that did not require IV access was put together the day before I was discharged. Because it increased some of the meds I already take by quite a bit, the chance to “try it out” before I was home and on my own not only to make sure it addressed my pain, but was something that didn’t leave me a drooling nonfunctional mess was appreciated.)

It also highlighted some weaknesses I need to address before the surgery. Rave busted her ass, like she always does, to be as available to me as she possibly could, but at the cost of enough repairative sleep to allow her to be fully functional at work without having to rely on her wakefulness drugs or caffeine, which in turn gives her migraines. When I go in for the long haul, it will be better for both of us if we can figure out a schedule that allows her to feel useful and be available to me when I need her, but also gives her “nights off” so she can get the sleep she needs. This means we may need to find other people who have evening/nighttime availability to spend time with me, but also make sure I have occasional daytime visitors who can help with some of the needs/tasks that I can’t ask a nurse or tech to do.

I think it’s important for people to understand that although visitors who come purely to socialize are nice and appreciated, it’s not the only reason I may want friends and family around. For instance, I had a really difficult time this visit getting the nutritional team to understand and meet my basic food needs, so having people bring me supplemental food and drinks can assure that I’m not going without. I may also want someone I feel completely comfortable with assisting me with things like hygiene, rather than having to ask a stranger, especially since the inpatient experience forcibly strips you of a fair amount of privacy and autonomy already. Being able to run down the day’s meetings with various doctors and other medical professionals with someone else not only helps solidify my own recollection – which I have issues with due to some of the neuro issues – but brings a fresh perspective and alternate points of view that may hold important answers for difficult situations. Sometimes, having someone else present while meeting with a doctor can help remind me to ask questions I may otherwise forget, or bring up subjects that those who assist me might benefit from knowing. Even something as simple as watching as a nurse dresses a wound in a particular way can then lead to having someone who can teach those who can’t be present when it’s demonstrated (but who will eventually be in charge of doing the dressing).

And it’s worth mentioning that this trip was incredibly emotional for me. Admittedly, part of the problem was that I got my period two weeks early (practically unheard of for me) so I’m sure my hormones were all messed up trying to deal with that. But I had two days where my anxiety was bad enough that the nurses were suggesting I take some of my anti-anxiety medication, and not having someone who could serve as a touchstone to reality exacerbated issues. I am, by no means, trying to guilt people about not being able to visit, especially since this trip was unplanned and happened to fall almost entirely during a work week, but more to share something Rave and I learned about the power of visitors.

One of my fears about how the planning for the upcoming surgery is falling out is that I have plenty of friends and lovers who are coming from out of town to be there directly before and after the procedure, but most of them will have to return home once I am stable. That leaves me with several weeks where I will still be stuck there, so it might behoove me to reach out to friends and family and set up some planned visits during that time. It can be anything from a local friend making the commitment to come “every Wednesday afternoon”, to other long-distance friends making a trip down to spend the weekend. If you’d like to volunteer for this important service, please email me at awesome.del@gmail dot com so I can start putting together a calendar. If you aren’t local and want to come for a visit, we have lots of resources not only for crash space, but also for people who can lend you a car, or drive you around, or provide meals so together we can minimize the cost. In that vein, if you have those sorts of things you could offer others, or skills/talents/abilities that we might be able to put to good use during this time, please let us know.

That being said, I think it’s okay to mention that in the next few days, Rave and I are beginning to collect funds specifically to help defray the costs of those who have the time and/or inclination to visit, but for whom money is an issue. It’s not the only reason we’ve decided to pass the hat, but it’s one of the most important ones. We’ll also accrue some costs that come with a long term hospital stay that medical insurance doesn’t cover – gas and parking costs, comfort items, etc. Most importantly, my insurance doesn’t cover any of the sorts of things one needs once home again, like bandages, tape, cleaning supplies, and the like. The nurses usually throw together a “care package” of items to help me out, but when I had the first drain in, we eventually ran out and had to source a lot of this kind of stuff on our own.

When the announcement goes out, there will also be things that people who live too far away, or for other reasons cannot contribute time, resources, or money, can do to be of assistance. For example, we will have a phone/email tree set up so people can be kept up to date with how I’m doing without having to clog Facebook (or share intimate details about my recovery with people I barely know) or having to wait until there’s enough for a blog post. We will need a few “captains” who can be in charge of a list of three or four people; make sure everyone gets information and also to collect questions/observations and aggregate them so the “home team” can address them without having to compose the same response several times. (You know, this sounds so complicated, but I’m actually kinda flattered that there are so many people who care about me and my welfare and want to be kept in the loop. When I stop worrying about the details and look at the bigger picture, I’m always humbled by how much affection there is for me in the world. Really.)

Finally, I have “appointed” my friends and (somewhat unofficial) clergy persons Hugh and Shelly to undertake the spiritual support side. There will be a post before the surgery that will help coordinate all the wonderful prayers, energy, and will-working that people have so generously offered.

For now, I’m very glad to be home and in comfortable surroundings. I’m pleased that I have a pain control plan that actually makes things tolerable, and can be proactive about fighting off some of the infection to make the surgery’s success easier. This was a welcome eye-opener on how Rave and I can better plan for what’s coming to minimize our stress and help distribute the work so no one person is overtaxed and everyone – me included – gets the care they need to get through this.

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Book Review: Dion Fortune’s Book of the Dead (Crossposted)

October 25, 2012 at 7:26 pm (Death and Dying, Living, Spiritual) (, , , , , , , , , )

I am crossposting this on both of my blogs, since the subject matter is germane to both of them in different ways; I have different subscribers on both blogs, so I wanted to make sure no one missed it.

Dion Fortune’s “Book of the Dead”
published by Weiser Books
Amazon link: Book of the Dead

This book, which is probably better called a “pamphlet” at it’s very short 77 pages, was originally published in 1930 under the title, “Though The Gates of Death”. It’s not usually listed among her works due to its brevity, but I was lucky enough to stumble upon it while searching for new books to read on my Nook. This version was originally published in 1995 by the occult group she founded near the end of her life, “The Society of Inner Light”.

You’ve maybe heard of her before, because she was a strong influence on authors and occultists who created the Pagan traditions and thea/ology that we take for granted today. Diana Paxton and Doreen Valiente both credit her writings as a go-to when they were beginning what we now call Wicca. She’s also written one of the best books ever on the subject of psychic self-defense, titled “Psychic Self-Defense”. That is a book I frequently make students read and digest.

She was very active in the burgeoning occult underworld in the 1920’s and 30’s. Interesting to me, she had a nervous breakdown and went into a psychiatric institution right before she began having psychic and other magical experiences (madness path, anyone?). She studied various occult systems, including Crowely’s Golden Dawn, the Freemasons, and the hottest parlor religion, Spiritualism – a form of Christianity that held strong beliefs about being able to contact and interact with spirits of the dead and astral travel. She was also a “lay psychotherapist” (not far from what I do, sometimes) who had taken classes on the roles of psychology and psychic phenomenon from the Theosophists. And if that isn’t cool enough, there is scuttlebutt that she was one of the occultists the British government employed during WWII.

Needless to say, I was thrilled to find an E book version of her Book of the Dead. Working with spirits of the dead, and traveling to various other planes of existence, is something Ms. Fortune was very well known for. I was eager to hear what her thoughts were on the process of dying, and what the living can do to assist the dying in their crossing over.

These are the two things that the book focuses on the most – what the body and soul go through when one begins to die/what the soul can expect upon severing itself from the body, and what the living can do to assist the dying in making a gentle transition from life to death.

The first place that felt like a slap in the face (there were a few) is that she very strongly felt that there was no way that “natural death” could occur before “three score and ten years” (70). She explicitly states that dying from disease was not a “natural death”, because it meant that you were less than vigilant with your body. I believe this, like some of the other things I strongly disagree with her on, is a product of her era. This was before cancer was really known or understood, and although there still lingers some attitudes that some cancers are the patient’s “fault” (lung cancer, I’m looking at you!), I think our society’s view on those who contract terminal illnesses has radically changed since the 1930’s.

She describes three stages that a soul goes through after the last breath is released. The first is the disentanglement from both the “clay body” (your physical form) and the “etheric double” (how you envision yourself when you’re not looking at your body, basically). This can be assisted by those present at this stage by attempting to connect telepathically with the dying and give them permission and encouragement to move on. Also, having a source of prana (energy) present is useful – thus, the tradition of lighting candles and spreading flowers for the dead. Otherwise, the dying may use the prana from someone present, which she says explains why loved ones who suddenly feel tired shortly after the last breath have no explanation for it. I don’t know if I buy that entirely, since I know there’s a release of stress and energy when you know someone you’ve been sitting with is finally dead, and that might be confused for “stolen prana”. But it can’t hurt to have a good source handy if you’re sitting vigil for someone.

The second phase she calls “Purgatory” (remember, she was still seeped in Christian framework, even though she was an occultist). Supposedly, the soul is shown visions of their unrealized or unsuccessful desires. She talks about Karma a lot in this section, but I wonder if she only uses this term because it was the one accessible. The soul either has to overcome its attachment to these desires and failures (and thus move on to become a Master on the Higher Planes) or be reincarnated in order to live out another life to learn how to overcome them. Interestingly, Fortune states that while souls are in this phase, which starts “a few months after death”, they are not contactable, and cannot hear the summons of their loved ones on earth.

The third phase, “Heaven World” depends on what the disposition of the soul is – it can either ascend and become a “higher being” – a soul that assists in God’s work, or works with other freshly dead souls, or some other purpose – or you prepare to be reborn into a new incarnation. There is a time between phase 2 and 3 where a soul may be communicated with again, but Fortune warns that if you continually contact a soul in this phase, or bring them to mind/heart on a regular basis (like on their birthday, or an anniversary), you may be inadvertently keeping them from moving forward. If the departed does not feel like their old life is sorted, and their loved ones can move on and live their own lives apart from them, they cannot either ascend or be reincarnated. This meshes with some of my experiences working with dead who have been trapped due to similar circumstances.

I found many of her insights incredibly interesting, especially her thoughts that those who are psychically or magically aware have a much different death experience from those who are unused to fairing forth from their earthly bodies. She gives very veiled references on some exercises one can do to make that transition easier, and to retain consciousness during these processes. She attributes that most people cannot remember past lives, or what the after life is like, because their souls were “asleep” during them, and they attribute the experiences to a dream. She points to those who have a good handle on who they were in past lives as being more magically gifted in one way or another, because they are closer to becoming “masters”.

However, there was some stuff in there that I just found wacknutty. As I posted on Facebook, she states forthrightly that if a soul is severed from their body traumatically, like in a car accident, that soul will find itself inside the body of a baby about to be born. She claims that it is old midwives wisdom that if a baby is born with “old eyes”, it will die prematurely. Yes, she says that the traumatically severed soul jumps into a baby’s body so it can die properly, shortly after birth. I really wonder if she had a friend/friends who had lost children and were looking for some occult reason for it, and this was what Fortune came up with. Otherwise, it just seems too cruel, even for me.

I found this to be a really great read to get me in the mood for Samhain, which I will celebrate this weekend. It made me think very hard about what it must be like for a soul to leave a body and find out that it is more than the flesh, and gave me much to think about not just about where we go when we’re dead, but how we get there. It also gave me some incredible insights on things I can do should I find myself sitting vigil next to someone who is terminal. Some of it is definitely a product of the era it was written in, and there’s a lot of Christianity to translate to your own belief system, but the translation isn’t that hard. (She might have even been using it because it made it easier to publish in that time.) I suggest giving it a read, and it’s super short (77 pages). If you are a Nook user and wish to borrow my copy, complete with my own notes and thoughts, drop me an email and I’d be happy to lend it out.

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Letting Go, This Time For Real

June 26, 2012 at 11:32 am (Death and Dying, Living, Spiritual) (, , , , , , , , , , )

I’ve been away for two weeks and therefore I apologize for not having an update recently. However, while I was away, I was inspired to write down some ideas that will be shaped and formed into the blog post you are about to read.

I have lost people I cared about to death. For a long time, Death avoiding touching my heart directly. I had lost friends-of-friends, or people I had met but not loved, but as time moves forward your chances of losing someone you love to the reality of endings gets incrementally larger until it’s impossible to avoid. You wake up one morning, or awake in the middle of the night, or get a phone call at work, and someone you cared deeply for is no longer conscious on this planet in any functional sense.

During the immediate grieving process, mourners are frequently implored to “keep them (or their memory) alive in your heart”. This is supposed to bring solace by saying that the person is not erased, but that through the act of loving them beyond the veil and telling their stories to future generations we can keep a part of them with us, to comfort us when we’d rather reach out and feel the warmth of their hand or the wisdom of their unique perspective. When we look at the moon and think about his love, or when we eat candy and think about his childlike wonder, a little piece of him sits with us still.

However, there is a time and a place for this. And like everything else in life, there is a time and a place for it to end. There must come the transition from keeping your favorite jeans that bust a seam irreperably to admitting that they are now just tatters and are meant to go back to the soil. There comes a time where our grief is resolved, our lives have moved forward, and to keep someone so prevalent in our thoughts and hearts becomes more of a burden than a comfort. As someone who works with the dead, I have also heard this from them.

There is something beyond this place, they say, but I cannot get there. I am held here by all the people. They speak my name with longing. They call out to me in times of distress. They hold yearly rememberances for me in the same place. I feel as though I cannot leave, that I cannot progress to the next place, the place I am meant to be, because their need is a chain that binds me here.

Let me be clear, here: I am not saying that once someone dies, we should quickly kick dirt on their grave and move on as though something momentous didn’t just happen. We should not take time to speak the names of our beloved dead in a time and space that is appropriate for them. We should make room on our ancestral altars for those who have shaped our lives and made us the people we are. What the dead are telling me is about energy, about the difference between desire and need.

This difference, and learning to discern it, was a unifying theme for me these past two weeks. (Although I was in the same physical location, I was at two events run by two very different organizations with very different foci.) In the context of this entry, desire is good. Desire is an ephemeral thing, a thing of the spirit, of energy. It lets someone (alive or dead) know that their existence matters to another person, that they have made an impact on the world around them. Desire is something that can exist with or without cultivation -that is, I can harbor my desire for an ice cream sandwich for decades without actually having one, and no one will be harmed by my desire. Desire is good for people – it reminds them of that which connects us, and makes being a human a pleasurable thing.

Need is different. Need is not inherently bad, in and of itself; we all need things. However, it’s when desire turns to need – when the ephemeral becomes physical – that it gets complicated. I don’t want anyone in my life to need me, because that implies that if I cannot meet that need (for whatever reason), their quality of life is absolutely dependent on me in some small way. I look at this difference a lot when I ask for help – is it that I just don’t want to do a thing because it is undesirable for me to do so, or am I physically unable to perform said task? There is a world of difference, both in the mere determination of which is which, but also with what one can reasonably expect assistance with over time. But I digress a little.

For some people, the act of “keeping a memory alive” becomes aneed. They feel they cannot move on in life without constantly talking to the person who has passed, even if that person cannot respond. They cannot experience something once shared with them as a solo experience, even in a reclamation sort of way. In the dark, quiet moments of sadness, they call out to the one who has left, and pull them a little closer. Tie them a little harder. Keep them in their hearts in a way that doesn’t allow for growth and change.

I mean, it’s not all that dissimilar from relationships between living peoples. Part of what’s great about the human experience is that it is one of constant change. Today I am afraid of talking to strangers, tonight I talk to a stranger and find it is not a scary thing, and tomorrow I am less afraid. When I look at forming a long term relationship with someone, I do my best to commit to the journey, not the person. The idea is that I like them so much that I’m willing to ride the tides of change with them, to be open to not only little expected changes (they grow older, their boobs sag, they start wearing plaid pants, they want to move to Florida) but the big unexpected ones, too (they want to change genders, they want to reframe the relationship in a different way, they want to change jobs, they want to take on a new lover). I’m in the boat, through smooth sailing and rough waters.

But for me, and for my specific experience of the dead in the last two weeks,  part of committing to that journey is recognizing when that journey has ended, or at least when the part of the journey that includes the other person is over. It is just as sacred to say a final goodbye and release a lover to a life without you, as it is to release the memories of a dead beloved and do your best to fill that void with new and interesting memories of your own.

Here’s the woo section. I promise it will be short. I spoke to some dead people in the last two weeks. And this is the lesson they wanted me to learn. That desire and need are different, and have different physical manifestations on the other side of the veil. That journeys end, and that’s okay, and sometimes letting go and moving on is the right thing to do, even with your beloved dead. That holding too tightly to someone means that they feel they cannot fully bloom and blossom, and when desire becomes need that need can sometimes strangle and kill.

I challenge you to think about your beloved dead, those recently passed and those who died decades ago. Make a list of them. Include celebrities whose lives and/or art shaped you in formative ways. Find out if teachers who were foundational to your development are alive or dead, and if they have passed add them to your list. Create a space in your life (an altar, a painting/sculpture, a story or collection of stories, an act [like fixing a car or smoking a cigarette]) and do it for your dead. But don’t do it every day. Don’t do it to fill the holes in your living life. Do it when it is appropriate – maybe on their birthdays, or on Samhain (look it up)  or even on New Year’s Day.

But when that is over, move on. The best thing you can do for your dead is to set them free. Then they can make the choice to come to you when they feel they can, rather because they are forced to. They can teach you valuable lessons when they are free to be themselves, when they can move on to this place “beyond” that they keep telling me about. It isn’t a thing to be done while their bodies are still warm or your grief is still fresh, but it is a thing to be done.

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Eating (Gluten Free) Crow

March 9, 2012 at 10:07 am (Chronic Pain, Living With Chronic Illness, Medical) (, , , , , , , , , , , , )

It seems to be the Del de Dao. A well-meaning person will tell me about how their SisterFriendFatherInLawVeternarian tried [thing] and saw miraculous results. I ask my doctors about [thing], and I get mixed messages. I do a little research, and I hear both positive and negative stories about [thing].

If [thing] is popular, or the hot-new-treatment-of-all-your-ills, I’m about as resistant to it as someone whose favorite indie rock band was just seen on MTV. I don’t know why this is, honestly. I’m not a follower, and that streak in me runs so deep that when something might even be good for me, if it makes me feel like a follower I decide not to do it.

Yet somehow, in the end, there I am, doing [thing]. Sometimes it’s the best decision I’ve ever made, and sometimes I was totally right. Most of the time, the effort to do [thing] is greater than the benefit I see from [thing], and so [thing] falls by the wayside. That even applies to alliopathic treatments as well; if it doesn’t make a tangible difference in my day-to-day, I usually give up.

The most recent example of this was acupuncture. It is something you can’t avoid reading or hearing about if you have chronic pain. The overwhelming messages out there about pain and acupuncture is that it makes a radical difference. Most of my friends who won’t or can’t take opiate medication subsist on acupuncture for pain management. I was resistant to it for a couple of reasons, the biggest being that any kind of “standard” energy work (that isn’t tailored to the client specifically) seems to affect me in a negative way, and from what I understood about acupuncture that was its mechanism. If client complains of X, put needle in Y, regardless of who the patient is and why X.

I made the decision to change my curmudgeonly ways and give it a shot when I decided to go off the Fentanyl. As I’ve said before, Fentanyl is basically legal heroin, although some argue that it’s more potent. I was on a high dose, and I knew the detox was going to be pretty bad, and that I was likely to see a radical increase in my pain levels. I happened to have a friend who had graduated from a well-respected local acupuncture school, who had a good sense of the fact that I was energetically weird, and was willing to work with me to see what we could do. It didn’t hurt that she could come to my house, either.

My general policy on any sort of treatment or lifestyle change that I choose for medical reasons is that I will give it three months. I figure that’s long enough to see a change if a change is coming, but not so long that if it’s having a negative overall effect that I can’t recover. (Remind me some day to retell the story on why only “eating” protein shakes and tofu for eight months was a colossal mistake.) That’s the commitment I made to the acupuncturist; I would do whatever she suggested within reason for three months, and then I’d re-evaluate my situation when all was said and done.

I will admit that in this case, it was a tough situation. Not only did I have all the normal Del symptoms, but I was in deep withdrawal from the Fentanyl and there were many sessions where all I was really interested in treating were the side effects of that. But I did just about everything the acupuncturist suggested; I bought supplements she thought would be useful, I allowed her to try whatever treatment she thought best, even when I was wary of the outcome, I was straightforward about my experiences so she could shape a treatment plan.

Unfortunately for me, and I guess for her too, it didn’t work out. I found that the effects were negligible, both on the withdrawal symptoms as well as my pain. There were a handful of sessions where I felt better for a few hours afterward, but as soon as any sort of “real life” intruded on the feelgoodness, it disappeared. I had several sessions that actually aggravated my pain or had other pretty unpleasant outcomes, including a notable session (during that wacky earthquake we had over the summer) that triggered some of my mental health issues in a serious manner. There was one treatment in particular that I felt probably did actual damage to me. Considering that I let her choose how often I saw her (which turned out to be 2-3 times a week, and I believe in one week it was 4), it was a pretty expensive thing to get such a small return on. In the end, I decided to stop treatment and see if I missed it; I actually found that I was much happier when it was over.

As you might be able to guess from the title of this post, I’m getting ready to undergo another new-hot-treatment that’s been getting a lot of press. I want to make it clear that I’m pretty damn skeptical about it, because eating gluten-free feels an awful lot like the 2012 version of the Atkins diet in 2002 (which I also tried). The “eating crow” part is because I’ve questioned some of the acolytes openly on their celebratory posts, and I’ve argued with people who have suggested this treatment to me in the past. Because caffeine gives me bad side effects, right now I rely on carbs like bread and crackers (and admittedly, sometimes cookies and muffins) for quick cheap boosts of energy and to increase my pain tolerance. I’ve been tested several times for Celiac and they’ve all been negative. However, this time I’ve been won over not by the hype, but by the sincere faith of the person I’m trusting to walk me through this experience. She’s a professional-level CrossFit competitor who has studied the affects of nutrition on the body and is probably the most knowledgeable person I’ve met on the subject, professional or amateur. She’s currently working on coming up with a diet plan that is functional with my current limitations (limited access to my kitchen, mini-fridge, needing a fair amount of ready-to-eat food, not heavily reliant on raw vegetables, with a fair amount of choices for eating out/away from home, and allergies) as well as a few exercises that I can reasonably handle given my body and its quirks.

I’m not looking forward to this, but at the same time, I am holding out hope. That may sound a little paradoxical, but it’s the truth. One of the reasons I am overweight is due to growing up poor; my brain and my body equate restricting my food intake and choices with being destitute, which in turn is a trigger for depression. It isn’t logical and I’m okay with that. Also, being a fat kid, there aren’t many diets I haven’t tried, and each one of them came with their own stories about how great it was and how it was going to change my life. I should be clear here and state that I am not undergoing this treatment to lose weight, although we expect that will happen of its own accord. I am doing this because many people with undiagnosed pain conditions, as well as people with CFIDS, Fibromyalgia, Multiple Sclerosis, and other maladies that have been posited to me, have found some relief of symptoms from eating a gluten-free diet, and because this friend was incredibly compelling in her attempts to convince me to try this. I should also add that the thrust of this undertaking isn’t just being gluten-free; I don’t know the whole plan but I do know that it has some basis in the Paleo diet camp. Lots of meat and veggies, no gluten, “good” carbs, with a little wiggle room here and there as needed. I know that a point she felt strongly about included, “No ‘gluten-free substitutes’, either.”

I don’t have a set start date for this undertaking, as she’s still working on the plan and I assume there will be some discussion and education before it begins. Ninja has already stated that he is happily opting out of going on this journey with me, which may make things exponentially more difficult, but I don’t blame him either. I’ll let you know when it starts, and may give some updates about how its going; I’ll definitely let you know what I decide after three months.

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