Ten Hard Lessons I’ve Learned About Being Chronically Ill

February 5, 2014 at 1:14 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , )

I’ve been struggling with chronic pain and illness for over six years now. In that time, I’ve come to some difficult situations and choices, and for the most part had no source material to turn to. Being without a specific diagnosis means that there are less places to access wisdom by those who have gone before – I read some that share symptoms or challenges with my reality, but even those who have a name for what’s going on find that there are times when your only choice is to struggle through and make the best choices you can. Sometimes we choose wrong; we do something that makes things worse, or we choose a doctor who treats us poorly, or our behavior during times of stress alienates the very people who want to support you the most.

These lessons are by no means definitive, or the only lessons I’ve learned, but instead I’ve chosen these because in hindsight I really wish someone would have given me advice (or even a clue!) in hopes of avoiding some of the inherent pitfalls involved.

10. There is a difference between someone who wants to help you, and those who want to solve your problems.

The people who have been the most supportive in times of difficulty are the ones who chose to assist me specifically so I could do more for myself. The ones who end up burned out and resentful are the ones who chose to do things in hopes of either doing things for me, or doing things with the expectation that things will get better in some form of permanent fashion. I could continually ask people to scratch my back, or someone could buy me a backscratcher. (And here’s where I thank the anonymous person who did exactly that.) You could volunteer to take dictation when I can’t type, or you can help me find dictation software I like or suggest another way of sharing my thoughts (like a podcast). This lesson taught me not only how to tell what a person’s intentions are (to help or to solve), but how to phrase requests in very specific ways so even those who are inclined towards solving end up doing things that make us both feel good. If I know you’re a “solver”, instead of asking for something nebulous (like, “I need a way to move my legs more without causing pain”), I take a little more time and ask for something more specific (“I need one of those cycle bikes that rest on the floor and have a motor, here is a link to a few I like on Amazon.”)

If I’m unsure of what the specific need is, that’s when I turn to the helpers. Because they are focused on supporting my independence as much as they are focused on the challenge at hand, their brainstorming will naturally drive itself towards choices that give me more freedom and less reliance on others.

I’m not saying one is bad and the other is good; I’m saying that in order to lean on my support system without burning everyone out, having a general sense of how someone feels helpful can expand and strengthen your team. Just like you go to Joe when you want to gossip, and choose to go shopping with Pat because they have a style sense that matches your own; knowing who is best qualified to get your through a hurdle makes it easier to ask and receive with the least amount of guilt. Which leads me to…

9. People generally want to help as much as they can; those that won’t or can’t will make themselves known.

It seemed somewhat obvious to list “Asking for help is hard”, because you don’t need to be chronically ill to know that. What I’ve learned about opening myself up to receive help when I need it is that sometimes the “obvious” choice isn’t the right one. One of my people who drive me to doctor’s appointments comes from 3 hours away to do so, usually coming in the night before and leaving that evening. They’ve done this even when my appointment is less than 20 minutes from my house. I have tons of friends who live closer, but many of them have legitimate reasons why they can’t help out. Before I figured this out, I would totally freak out when I thought I knew the absolute “right” person for the job, only to have them decline or just not respond to my requests for help.

Another facet of this lesson is that although it can be downright frightening to be honest about something you need – especially if it requires large amounts of resources like time, money, or commitment – it’s better to be forthright. Even if someone can’t solve the whole problem, they may be able to help you by breaking the ask down to smaller chunks and delegating it to a larger pool of people. It might be difficult for someone to drive to my house, then drive to a doctor’s appointment two hours away, take me home, and then go back to their house. Instead, maybe one person picks you up and drops you off; another gets you at the docs and takes you halfway home, where someone who normally makes that commute can take you the rest of the way. Or if you need to clean house because you’re having a party, instead of asking one person to come the day before and help you out, you can throw a “pre-party meet-and-clean” so your shy friends can both do something helpful and get to know a smaller group of people before the throngs show up.

Before I learned that, though, I would frequently ask not for what I needed, but for what I thought people wouldn’t be offended by when I asked. I had to learn the very hard way that although it might be easier to ask for someone to drop me off somewhere and I’ll just use my walker to get around; if I wake up that morning and my arms aren’t up to the walker, I’m totally screwed unless my friend is physically able to deal with the wheelchair and has the time to stick around for my whole appointment. Or if I needed money to cover some over-the-counter medical stuff, I would sit and agonize over what I “really needed” and what I could “live without” or “make due”. Usually, someone would find out that I was using duct tape to hold bandages on or stealing alcohol wipes from the doctor’s office. They’d sit me down and remind me that people generally want to help, because knowing that their friend is in a bad way makes them feel helpless. Giving them the opportunity to make a difference makes them feel like they’re really doing something.

I also had to learn that there are people who will tell you many times that you can call them anytime if you need anything, but they are only being polite. In fact, I think one of the reasons that chronically ill people usually dismiss vague offers of help like these is because we’ve learned that there’s a good chance they won’t come through. Not necessarily because they don’t care or don’t want to (although there are people who don’t), but because they don’t have the resources or ability to help in the ways you need. You just get to a point where you know asking is a waste of time, even if you think they might be a good choice for one reason or another.

8. If your friend has stopped inviting you to fun group things, it is sometimes okay to check in and ask why.

If you’re wracking your brain to remember what you might have done to offend someone, because all of a sudden you’re no longer “on the list”, it could very well be because you weren’t able to attend enough other events because you didn’t feel well. Or maybe because the place where the party is a fourth-floor walkup. Or maybe because they know you don’t drink and so inviting you to the bar seems mean. And honestly, sometimes they’re worried about reminding you about all the cool stuff your friends are doing that you can’t participate in anymore.

I tend to tell people that these days, I see an invite as a way of saying, “We want you to know you are wanted”. Even if it’s obvious that I can’t participate, just knowing that when they were thinking of the top 25 people they want to go skydiving with, you’re number 23. Sometimes, I use the opportunity to see if some sort of adaptation can be made so I’m included – my friend has an upcoming birthday bash, but her apartment is up several flights of stairs; I asked her if maybe a day-after brunch could happen in a wheelie-friendly restaurant. Done! Other times, people are being too cautious about what I can and can’t do; I might have to bring a chair and take lots of breaks, but I am able to go to the bonfire in the woods given enough time.

7. If you’re feeling left out of fun things, make fun things happen in places and ways you can handle.

There are lots of times when I’ve been home on a weekend night, mooning over all the cool things people on Facebook are claiming to do that I can’t for one reason or another. And it’s not always about health/ability; I might not have the money, or couldn’t find a ride, or required me to RSVP too far in advance. Honestly, it didn’t occur to me right away that the answer was to take charge and plan fun things that were tailored to my needs. Now that I live in a completely-accessible place (thank the Gods!), I have been hosting more stuff. Not only do I know the place is accessible, but if I need a quick breather or if I get a bout of nausea/vertigo/pain/etc, I can duck into my room for a little bit and let my guests entertain themselves. And if I need to check out of the festivities completely, it doesn’t mean everyone has to leave. I just elect someone to take over hosting duties and disappear into the Del Cave.

And if the fun things that I want to do are location specific (like going to the Drive In), I can do my homework to make sure the place is accessible. I can also set up somewhere to be the Temporary Del Cave, whether it be in the car, in a friend’s spare room, or even the handicap stall. I tend not to carpool, so if I need to check out early no one else is inconvenienced (except whomever’s driving). If food is going to be part of the fun, I can call ahead to see if the food on premises is Del-safe; if not, I can usually find a small thing to pick at and bring food to eat on the way home. Even if I am worried that I will have to cancel last minute, I can make sure that people are as invested in doing the fun thing as much as seeing Del at the fun thing, so if I have to back out I know people are still having fun.

Even when I’m at my sickest, I’ve still entertained guests. I just make sure they’re informed up front that I’m not doing well and they should bring things to entertain themselves, or maybe even make plans to go be a tourist or go shopping at the Outlet Mall, so I don’t feel like they’re sitting outside my bedroom door breathlessly waiting for me to feel social again. That way, we both get to spend some time together, and no one feels mislead or guilty if I need a nap. It doesn’t hurt that we have wi fi and an off-brand Roku device, as well as tons of odd books to read. The town we live in has a few cool things to do, and we’re pretty close to places like Gettysburg and Baltimore if you really want to get your tourist on.

6. Needing a lot of down time, alone, can be spiritually enriching.

At first, any time I had bodily-enforced down time, my gut reaction was distraction. What book can I read, what show can I watch, what silly online game can I get lost in? Those are still good stand-by distractions, but when I’m experiencing more down time than up time, it can feel like I’m wasting my life. It only emphasizes all the things I wish I could be doing, or things I expected myself to be doing at this age that have been replaced with this stupid reality I did not want nor asked for. I start slipping down that greased slope towards the maw of depression. Depression brings it’s own symptoms and challenges, and it complicates your health situation that way. I struggled a lot with depression last year, but what became the rope ladder that got me going in the right direction was finding purpose in my rest. I re-started my meditative practice. I found some great online videos of seated yoga, wherein the guide repeatedly tells you that if a pose or stretch is painful, to just breathe and wait for the next one. I began sitting in front of my altars and just letting my mind wander. I began writing for the sake of writing, instead of feeling pressured to cater every word towards a goal – a new post, a new class, a new ritual, etc. I started a personal diary.

The more I found the usefulness in stillness, the more I began to see bodily-enforced down time as something to look forward to. It let me choose to slow down, even if I didn’t have to, which helps keep me from overdoing it. Even if I’m away from home, being able to find a quiet place to sit by myself and just listen to the nature around me can help me enough so I don’t have to run home at the first sign of discomfort.

It also helped me clear out some cobwebs in my Godphone pipeline. Whodathunk it was easier to hear the Gods when you weren’t constantly doing things or thinking things? It also gave me the joy of feeling the presence of my Gods when I didn’t need them; to be able to sit and commune with them without any goal or purpose other than to be. It fills my heart with joy when I have the distinct pleasure of sharing my life with my Gods, even when all I can do is lay in bed and open myself to them. It has definitely strengthened my bond with Hel, who quite enjoys my company and a cup of tea from time to time.

Just finding ways that make stillness productive in its own way, while still being relaxing and stressless, makes me appreciate that my body reminds me to do it from time to time.

5. Be honest, with yourself and with others, about how much time you can spend with them, and how you want to spend that time.

Maybe I’m in the minority, but I would rather have one incredibly long and windy phone call a month than seventy billion text messages a day. Not only do I know it is very likely I can find an hour to commit to said phone call, but it just feeds me better. I see text messages as a tool of necessity – I’ll be there in 20 minutes, Do you know BobJo’s phone number, Are you free for a phone call tomorrow, that sort of thing. This is also why I am rarely signed on to any online chat service. It feels too demanding – answer now or I will ask you sixty times if you’re still there!

It also means that if I’ve just spent a whole weekend with you in person, I can guarantee that I will spend the next week in lots of down time. I value in person time quite a bit, but I’m also content if it only happens once or twice a year. I understand that we all have busier lives now, and the convenience of immediate communication in McNugget sized bites is undeniable, but it just doesn’t feel right for me. I know this paints me as a luddite, and I don’t care. I care so much more about the quality of the time we spend together, doing things that we will remember and that matter to us, than trying to live up to demands of being always accessible and immediately responsive to all of the people who matter to me, all of the time. I am one of a few people I know who not only shuts off my phone from time to time, but I also leave it at home! Aghast, I know! (It may sound a bit crass, but now that both of my parents are dead, I no longer worry about there being an emergency I need to know about right away. I figure there’s nothing I can do about an emergency that can’t be done when I turn my phone back on, or check my email, etc.)

I know that I’ve been shit about answering email, but I’m making a real effort to get better about that. It’s not going to happen overnight, though. I get a lot of email, and the majority of it is the kind that implies a timely and personal response. I am also working on organizing my inbox so messages don’t fade into the abyss that is “the next page”, buried under reminders that Barnes and Noble is having a sale this week. I decided to focus on email because I enjoy exchanging written words with people; and email no longer comes with the expectation of an immediate response (unless it says so). I find that even if someone assumes everyone answers email in 24 hours or less, as long as I send them a thoughtful response that shows I took my time to think about what I wanted to say, I’m usually forgiven.

The point I’m trying to make here, though, is that no one has the right to dictate how you spend your time but you. Obviously, some kinds of relationships will want more time than others, but even then I consider quality over quantity.

4. “Go to the doctors” is not a solution of any sort.

Often, when I write about my symptoms, especially when I am worried about what they might mean, people tell me to see a doctor. On the outside, it makes sense. But the part that makes me want to pull my hair out is when people expect that a single doctor’s visit will somehow provide anything resembling answers. No matter how much information you bring with you, no matter if you write down your symptoms and questions beforehand, no matter if you’re self-educated about your condition or what tests might be necessary to figure out what’s going on, doctor’s appointments are rarely about answers. It only seems to apply if you’ve been seeing a doctor on a regular basis, have limited discussions to a certain subset of your symptoms, and have undergone tests and studies and what have you; then, maybe there might be some sort of resolution like surgery or treatment. 90% of my doctor’s appointments go exactly the same way; I come prepared to discuss my symptoms (including how they are limiting my ability to live life), and the doctor orders tests. The tests come back, and if I win the doctor lottery the first round of tests *might* show something treatable. Most of the time, it’s the beginning of a long road, where you are referred to several specialists, who all start from ground zero (because they don’t rely on prior doctor’s thoughts or opinions).

One of the biggest issues I’ve faced with the “go to the doctors” conundrum is along the way, someone will find an actual problem. In fact, I’m willing to bet that the more doctors you see, the higher the likelyhood that they will find something. This sounds like a positive thing, and in a way it is. It was good to know I had a giant abscess in my abdomen that needed to be removed. But it also meant that for the next ten months, it was the only thing I saw doctors for. Time and money being limited, it meant that I failed to follow up on tests from my neurologist, endocrinologist, and all the other specialists that weren’t related to the abscess. When I finally have the time to go back to these other specialists, I am always chastised for the lapse. Some tell me that I’m obviously not serious about finding treatment, and tell me to see another doctor.

On top of all of that, when I’m brutually honest with a doctor about the time issues involved, they act like they should be my only focus. I had been cleared for an uterine ablation three years ago (and I really need one), but the problem has always been that I have to schedule it four or more months in advance. By the time the surgery rolls around, I’m almost always in the hospital or about to be, for something completely unrelated. I have cancelled four ablation appointments so far. When I tell my OBGYN that the only way this will happen is if I can get it sooner, they act like I am asking for VIP treatment.

Another example: I saw a new neurologist last week, and I’m pretty excited about working with him. But I told him up front that I’m in a time where I can chase tests and make appointments and such, but that time is finite. I already know I have a new abscess growing in my abdomen, and there are a few other medical situations that are getting more serious. I explained to him one of the reasons I haven’t been able to get a diagnosis is because the doctor takes too much time to order and review tests and by then I have something more urgent to attend to. So what did he do? Schedule a test for a month from now, and a follow up two months from now. As I’m seeing my PCP this week about some stuff I am pretty sure will be determined to be more urgent, I might as well not bother.

Even with excellent insurance, there is a financial cost to all of this test chasing and multiple appointments too. I have to have money for gas, parking, and sometimes have to pay my driver. I frequently have to pay a fee so I can get copies of the results for other doctors (although this has gotten better since concentrating most of my specialists and my PCP through Johns Hopkins, since they have an electronic patient folder system where they can see what everyone else is doing). There are other kinds of costs, too, like spoons. I am worth absolutely nothing on a day when I have a doctor’s appointment, and doubly so if there some sort of test. Although Rave helps me a lot, I still spend time making the appointments, finding someone to take me, figuring out what I need to bring, if I need to fast or not eat certain foods, knowing and bringing what I need for comfort, etc. And none of that even covers the times I do all of this only to find out I can’t be seen, or if the machine won’t accomodate me, or if there’s no point to the appointment because the doctor hasn’t received the results yet. It’s ridiculous.

So yeah, when someone suggests I “go see the doctor”? I just laugh quietly to myself.

3. You are the only arbiter of what you put in your body/what you do with your body, and you don’t have to answer to anyone about it.

I can’t even begin to tell you how much shit I’ve been given about choosing to take opiates for pain management. Or about taking antidepressants (even though I take the kind I do because it also helps with nerve pain). Or about not eating healthy food every single minute of every day. Or about having an alcoholic drink (a single one) once every six months or so. Or about which supplements/vitamins/homeopathic remedies I should or should not be taking. Or people sending me articles about new medicines or treatments with the expectation that I will immediately talk to my doctor about it. And as those who have read the rules of this blog already know, I get tons and tons of people recommending alternative therapies, from yoga to acupuncture or reiki to magnets.

It can be difficult, because most of these people are legitimately concerned about your health and well being. They’re not trying to be obnoxious or naive. It is something they can do that makes them feel helpful. And oftentimes, they actually do know someone personally who has benefited from these choices in some way.

My decision has always been about quality of life over quantity of life. When I found myself breaking down into tears because the restrictive diet I agreed to try denied me the pleasure of having ice cream when I wanted it, (and this may sound juvenile but it is absolutely true) that I didn’t want to live if it meant I couldn’t gain what little comfort I can. I have been weaned off of opiates, and my quality of life went to zero (and doctors made the decision to put me back on, and chided me for agreeing to go off in the first place). I’ve tried to be open minded about alternative therapies, but especially now that I’m on a fixed income, I don’t have a ton of money I can invest in something that only has a small chance of making a difference. I can’t afford to shop in exclusive, trendy supermarkets in order to stick to a nutrition plan, especially if I don’t like what I do get to eat.

I make choices that don’t take my health into consideration. Everyone does. Whether it’s opting to forgo an exercise regimen, or getting tattoos when it may increase your chance of infection, or eating something knowing full well your body will hate you for it tomorrow,  or skipping a meal every day in order to fit into that killer dress this weekend, it’s not hard to find examples of people making personal choices about how they treat their bodies that we might not agree with. Just because I am chronically ill does not mean I surrender the same right. I have to pay the same piper everyone else does. A life that is devoid of pleasure, comfort, and the occasional indulgence is practically inhumane, in my honest opinion.

3. If all you talk/write about is being sick, then the only thing people will know about you is that you’re sick.

Being chronically ill or in chronic pain is a very lonely thing. It is full of complex emotions and challenging moments that one really needs social support to endure. It can be liberating to express your inner dialog – your fears, your frustrations, your sadness, your oddly funny moments – so people might better understand what it’s like. It can help when your words encourage others to share similar stories, or even just leave a “I feel that way too” comment on something you wrote in a moment of despair. I would never, ever discourage someone from finding ways to communicate their struggle that ultimately help them face their illness with more resolve.

But before I started my second blog, most of my friends and acquaintances used this blog as their sole source for keeping in touch with me. As I consider this a blog – a place where I have a general topic and all of my writing ties into that topic in some way – everything I shared related in some way to either my personal experiences being chronically ill, or my insights about chronic illness and spirituality and the intersection thereof. However, many of those friends thought this was more like a journal – an accounting of my day to day life experiences – they began to think that I was consumed by illness and did nothing but go to doctor’s appointments and sit at home in pain. They didn’t call or write or visit because they were afraid to impose themselves, what with me being sick and all. I even had some professional issues because of this blog, where people refused to hire me or offered me smaller contracts so as to not overtax me. I realized that the blog had become a real issue, and I had to do something to remind people that I am still a dynamic, passionate, and lively person who has a lot of life to live yet. One of the solutions was to start Sex, Gods, and Rock Starsand take some time to promote it and build a following of folks who were only reading this blog because it was my sole expression online. It has been a real challenge, as making sure I am writing enough to keep both projects worthwhile (and to fulfill the Purposes for both – including my spiritual agreements about them). Sometimes I write more here, and sometimes there, and sometimes neither site gets updated for a while. But in the end, it has helped tremendously in creating a more realistic image of who I am as a well rounded and vital person who happens to also have chronic pain/disabilities.

2. It takes time to accept that the likely hood of “getting better” is not that great; not only do you need to accept it, but those closest to you need to, too.

Obviously, this is not applicable to every chronically ill person in the whole world; you may have relapsing-remitting MS where there will be periods of time where you feel pretty healthy. Or in a year from now, scientists will make a big discovery about your illness and there may be better treatments or even a cure. It’s possible that after years of not knowing what was making you feel so poorly, the right doctor will stumble onto a diagnosis that has known treatments to alleviate your suffering.

But for me, I’ve radically accepted that I don’t know what tomorrow will bring. At the same time, I have no delusions that it will take one thing to completely treat my suffering and sickness. Even if I got a diagnosis, the chances of it being something curable are pretty slim at this point – I’ve been tested for most of that stuff already. When those closest to me string their hopes on a someday cure, it makes me feel like they are not only ignoring the present but that they aren’t paying real attention to my journey thus far. There’s optimism, and there’s self-delusion. I’m optimistic that someday doctors will know why I feel sick/pain that may lead to more targeted treatments, but I also accept that if that happens some of those treatments are things I’m already doing (like pain management) and others will almost definitely take time before they work. I mean, knowing you have cancer doesn’t mean that in a week you’ll be completely cured.

I need people who can dig in and see the reality of today alongside me. I can really only deal with this in small chunks – maybe not quite “one day at a time”, but close – and if all you want to talk about is some nebulous future, I can’t relate to that at all. Deep inside of that optimism, too, there are crunchy bits of judgement (if you only took this more seriously, you’d already have a diagnosis/treatment) and denial (it’s not possible to have these symptoms and there be no singular cause). I have lost important people in my life because they failed to accept the reality of what is, rather than keep their eyes shut tight, hoping for the pipe dream of tomorrow.

It also subtly communicates that the lack of a panacea is my fault – I’m not choosing the right doctors, getting the right tests, chasing the right diagnoses, talking about the right symptoms, etc.

One of the relationships I had to end because of this kind of thinking was my therapist. I sought him out to be someone I could work through my feelings about my medical situation with, but by the fifth session he was so frustrated that my doctors had failed to diagnose my “obvious case of MS” that I had to ask him to stop yelling. The next few sessions comprised of me gently encouraging him to be patient with the process, and when I finally realized I had become his therapist, I ended the relationship.

1. Do whatever you have to do to survive. 

I mean this literally and figuratively. Even if you hate taking daily medication (or in my case, testing my blood sugar four times a day), if it makes your life an easier place to live, it’s worth it. If you are starting to hate or mistrust your doctor, get a new one. Ending relationships that only complicate your life and cause you more stress and pain may be difficult, but if it will eventually make it easier to get through the day, do it. Taking a break from seeing doctors because you need to save the money you usually use for co-pays in order to pay rent/buy food/pay bills can be a legitimate decision. Telling your doctor that a medication is on your insurance’s third tier (the most expensive one) and that you need a less expensive option is completely understandable. Finding plans or cards from pharmaceutical companies that will net you discounts on your meds might make your doctor sigh because OMG paperwork, but ignore their huffing and bring it anyway. Asking your friends to remind you of cool memories so you can read them when you’re in despair is not selfish or self-centered. Saying “no” to a doctor is always an option. So is “I want a second (or third, fourth, fifth) opinion”. Refusing to settle for a physician’s assistant and wanting to see the MD in your doc’s office makes sense if you’re medically complicated. Late night trips to the ER because you are in excruciating pain, or having a symptom that is scaring you (like chest pains or not being able to take a full breath) are not wasteful.

Don’t let anyone ever make you feel bad for making the best choices you could, given your resources and knowledge. 

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Contemplation and Dedication

December 30, 2013 at 2:18 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health, Spiritual, The Panniculectomy, Uncategorized) (, , , , , , , , , , , , , , , , , , , , , , )

Today will be a year and a day since my ordeal. It has been a very difficult, draining, painful year. I have suffered so many different kinds of loss that I don’t know if I can cleanly separate one from another. They have come at me from every direction, from places I would have never suspected, and in ways that only made any sort of sense in retrospect. I spent a lot of time mourning. This should have surprised me a lot less than it did, having struck a complex and winding deal with Death herself, but I’m still a Fool who bumbles forward ignoring all the big “Dead End” signs along the way.

And then, a few days ago, a very small light was lit. I spoke to Hel directly, and the best way to describe what happened would be that I got my “annual review”. We spoke about times when I truly contemplated in the way She had asked, and times when I did everything I could to avoid said contemplation. She showed me in that transpersonal yet compassionate way how each distraction from my Purpose had been removed. It sometimes felt like a student of meditation getting wacked on the knuckles every time they were obviously not focusing. But I learn the best lessons through pain, both emotional and physical, so it’s not like She was speaking a foreign language.

After we went through the Year of Contemplation, I asked if my failures and misdeeds meant that I had to Contemplate for another year again. “Oh no”, She replies with a slightly amused grin, “It’s not like when a new lesson begins, the old ones end. It just means you are building upon the foundation, and contemplation was the first layer.” Oh yippie skippy.

The next theme came to me slowly. I saw some opportunities start to swirl and manifest around me, and having learned some of my lesson, I wondered if this was a test to see if I would give in to another diversion. As quickly as I could, I went back to Her and asked for clarification. I’ve made enough terrible mistakes already; I was willing to risk being told to figure it out on my own if it meant She might share more insight.

That’s when 2014’s theme was given to me, much in the same way that 2013 was the Year of Contemplation. This year is to be the Year of Dedication. I will still spend much time, likely even more than last year, in spiritual contemplation, but I will also be taking on the responsibilities of sorting out what people/places/things fall within my calling, and which ones only serve as distractions or hidey-holes where I can run away from the difficulties of my station. Some of the plans I have for 2014 have already shown how they are part of my Dedication, and other plans have already been deemed unfit.

I am still sorting out one aspect of Dedication, and I think my confusion is because I really want Her to give me a straight answer, and She wants me to find the right answer on my own. When I first was in preparation for the ordeal, I knew that She wanted some form of oath or promise that would bind me to Her. I had first toyed with the idea of becoming Her consort or spouse, and honestly the reason I didn’t explore that further was because I listened to someone I shouldn’t have who had big stakes in the outcome of that decision. But now I am unfettered (for the most part) and the question lays on the table again. For now, I am offering her my celibacy, which is going to be a very big challenge for me. For I am not only forgoing sexual contact as part of this experiment, but I am also consciously not looking or even really fantasizing about finding a new lover. (Right now, I have a mostly non-sexual relationship with Rave, and a few romantic relationships that are not only long distance, but that I rarely ever see; so the temptation has been present to try to find a new dating situation of some sort.) What I understand as the long term goal of this experiment has less to do with establishing a sexual or romantic relationship with Hel, and more about accepting the reality of my life at 40 years old.

I have tried, more than a few times, to establish a “family”. In some cases, I married or created a partnership with a person whom I felt was able and willing to establish a family unit with, only to have the relationships fall apart and with that, a complete cut-off from their life. Other than that, I have tried starting covens, communal families of choice, and other group dynamics that focused on a long-term familial devotion to one another, but most of them (really, save one) have all eventually given in to entropy. I know this yearning for family is partially due to the instability of my childhood; and that has become even more of an issue with my mother’s passing early in December. I have never met my father’s extended family, and my maternal one has become estranged from me over time. The feeling is even stronger and sadder now that both of my parents are dead; even my brother voiced his concern to me that without my mother, we may all lose touch with each other.

I also have always wanted children. I had the opportunity once when I was much younger, but I opted out thinking that I would someday reach a more stable relationship in which to bring offspring. I have tried, both in the unofficial “hey, let’s just stop using protection” path, as well as with a more formal “let’s track my ovulation and basal body temperature and have sex when things look ripe for it”, and other than a few miscarriages it just never happened. Now I am having unmistakable signs of perimenopause, and I don’t have a fertile partner of the right biological sex in order to give it one last try. And even if I did, my life is just not conducive to the responsibilities inherent in having a child, which is why adoption is not an alternative. My best hopes is to try to remain an active part of my godson’s lives, and accept my childless lot.

It’s a lot to give up. When other people were dreaming of stellar careers and fancy trips, I’ve always had a far simpler vision of what I thought my life would be like. I just wanted a stable family life wherein all of the people involved had made a lifelong commitment to love and respect each other, and work collaboratively in raising some kick-ass children. I never really cared about what I would be doing or how much money we had, just that there were both adults and children in my life and that we had a loving, fun-filled home.

Then again, when I surrendered, first to Loki and later to Hel, I never asked for the family package. In fact, I consider myself lucky that I have been able to have the relationships I have experienced in the last fifteen years, and I have fond memories of all of them, even the ones that ended on bad terms. I know plenty of spirit workers who have been denied the opportunity to have mortal lovers at all, so I know they were a blessing. And there’s nothing written in stone that I won’t be able to have them in the future (yet); it’s just that I need to take this time to dedicate myself to the reality I am in, have been given, and to stop pining and/or trying to create a reality that is not mine to have. So the celibacy is less about not having sex (I am still allowed to masturbate, thank you Hel), and more about letting those dreams slowly rot on Her altar. If I were to take time to find and pursue a new lover, it would very much distract me from that process, and rekindle my hope.

And She has said that this is not forever, and that any changes to that I will have some say in. If Mx. Perfect-for-Del shows up, then part of that perfectness will have to be the understanding that sex is not on the table right away – not that it was with lovers in my past, either – and that my calling as Her shaman-and-sometimes-consort takes a huge precedence over any mortal, any day. It means that the tasks and responsibilities I take on this year as I begin to hone-in on what I am dedicating myself to are very much more important in terms of time, energy, focus, and availability. I will have to be very clear and unrelenting in my communication about what I am able to share with a lover, and if they can’t accept that, it’s better we know that up front, than spend a long time both hoping that things will somehow change.

I know that this year of dedication will be a lot of work. Not only personal work in the same way contemplation was, but also actual “must be awake, alert, and able to engage” types of work. My pain has been bad enough for the last two months that my doctor is very concerned, and I am also showing some early signs that I may have a new abscess. But part of what She wants from me is to find the balance between making time to do the things that allow me to be as functional as possible – like going to doctor’s appointments, seeking out therapies, eating well and getting what exercise I can tolerate, etc – but at the same time, not falling into another dark hole of counterproductive nothingness just because I feel shitty. I don’t know where that balance is quite yet, but I will sure be trying to find it.

I have so many other things to write about – obviously, my mother’s death being one of them – and honesty, I’ve started six or seven different entries and I eventually realize that I’m just not ready to share so openly yet. Another sad consequence of 2013 is that I had to learn to be much more circumspect about what I share online, as I have found more than once, someone using my words, my experiences, my life, etc as a way to attack, belittle, hurt, shame, or punish me. Some of the entries that I have deleted were purely emotional responses to such things, and I know that sort of pettiness does nothing but make me look like a jerk – I know this, because the people who did these things sure looked like jerks when they did it first. Instead, I am taking some time to note important thoughts, feelings, and insights, and when I am able to write from a less tumultuous perspective, I will get back into the swing of things.

But for now…

Hail Hel, Lady of Mercy and Patience.

Hail Hel, Who is as Warm as She is Cold.

Hail Hel, Who Loves Silly Fools Who Take Too Long To Learn.

Hail Hel, Giver of Life and Death in Equal Measure.

Hail Hel, Entropic Transformation.

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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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This is a Sacred Space

April 20, 2013 at 8:21 am (Spiritual) (, , , , , , , , , , , )

I’ve been doing this balancing act for a few days now. I don’t feel comfortable sharing all the details of my medical situation on the Internet any more, not even here. That feeling defeats the purpose of having the blog to begin with. It’s all garbled up in my head and I am trying to tease it out into a long, single strand that makes sense all around.

When the Regretsians first found my blog and started making fun of me and the stuff I write (and the stuff I believe in), I was a little hurt. Eventually, I put on my big boy pants and fucking dealt with it. I posted to the forum and I addressed them here as well. The story ended very well; even though I don’t really read or post there anymore, I still go back and can always find some person I knew (oh so many years months ago).  It’s worth noting that Loki was proud of me, proud enough that He had me mark the occasion permanently.

There will always be people who will take whatever I write on my blog and use it for their personal enjoyment. I think it’s despicable and low to mine a blog about my medical condition and chronic illness for such things, but my opinion doesn’t count and I’m okay with that.

But there is real harm happening. There are people who subscribed to this blog because they really do want to know what’s going on with me, and I find myself hesitant to write about anything at all.

I prayed about it, and this is what I was Told: This blog is a sacred act. It was, is, and will be a sacrifice on Baphomet’s altar. She wants me to delve deep into the places that hurt, that are vulnerable and scary, and bring them to the fore. He thinks that my journey is important to others, not just because they care about me and want to know I’m okay, but many people read these words because it gives them comfort and insight into their own journey with chronic illness, disability, pain, and death. They need to know that their suffering matters, that their tiny prayers whispered from inside the MRI tube are being heard, that when they awake in the middle of the night because their pain is so bad they can’t move Someone is still there for them. It may not be Baphy, but it will be someone.

Baphomet also said that the sacrifice is only more blessed, bigger and better and more holy, when part of the sacrifice is continuing to post in the face of ridicule and humiliation.

This is a sacred place. This is a sacred place not because I say so, but because the Gods do. So this is the last time I will be addressing my fear of posting. This is a sacred place because the people who come here say it is so. If you wish to defile my sacred space, you act against the Gods and people who have worked to make it what it is today, and what it will be tomorrow.
SMIB.

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I Want It As Much As You Do

January 18, 2013 at 12:15 am (Death and Dying, Living, The Panniculectomy) (, , , , , , , , , , , , )

I get the gentle reminders, the emails, the comments in conversation. I hear them and I feel kinda guilty. I sit in front of my keyboard, the ragged notes hastily jotted down in the ICU by my side, and I try to describe the experience I had in the Underworld on December 28th.

Part of the problem is that I’m still remembering, bits and pieces hit me at the oddest times. I’ll be drifting off in thought and then another memory, in full technicolor, will hit me, one that I haven’t had before. I try to write it all down, try to make it fit into clunky, odd looking words, for myself if for nothing else.

The first challenge, I recently figured out with help from my friend Hugh (a wonderful writer and poet in his own right) is that there is no narrative to my experience. I cannot draw a timeline in which things happened in a precise order. I can try to force the images, the blocks, the pieces of patchwork into some sort of made up fictional narrative, but it doesn’t seem to want to be locked down like that. How does one tell a story without the sense of linear time?

Secondly, as I’ve said before, parts of it are deeply personal. It would take me more paragraphs to explain some of the symbols and images I saw, because you don’t live in my head, know my entire life story, or have the same reaction to certain archetypes/images/thoughts/feelings as I. It don’t know if the story wants to be weighed down in lots of explanations and footnotes, because it loses something in the process.

I don’t feel ready. One of the bigger messages I got is that this is a year of contemplation, and it may be that I’m supposed to go over these notes, try to recreate all the little scenes and memories over a much longer period of time. I am pretty certain some things that I remember will only make sense once I’ve had a chance to go a little further in this journey, like when an author drops a seemingly random piece of information about a character in chapter 2, never mentions it again, and yet it’s that tiny little factoid that solves the whole plot. In some ways, part of me is still down there, sitting on a rock having a big think, hoping that if I give it more time to marinate, it will make better sense to me.

I feel like I owe you a story, something, some piece of wisdom that came from my experience. So here’s something I feel like I can talk about, but ask me any questions and I’m likely to crumble.

Everything is a choice, she whispers. So many people, especially those ‘spirit worker’ friends of yours, makes everything in their life out to be an absolute, it must be this way, the Gods told me so. They speak of it as though this life was thrust upon them and now they’re just following orders. You can always say no. You can always walk away. At any point in time, if you are doing something, anything, and someone asks you why you are doing it, you should be able to tell them about your choice. Not all choices are fabulous and wonderful; sometimes the right or best choice is the drudgery and the discomfort. But it’s still a choice, still something that you made a conscious decision to do. Every single day, you choose to go to work, because you think if you don’t you’ll lose your job and go broke and be homeless and eventually die of starvation. You create this future in your head where the only right answer is the one you’ve chosen, and every other option ends in ruin. But how do you know that if you take today off, you might just run into someone at the Starbucks who’s looking for a new such-and-so, making twice as much money as you’re making now, in a part of the country you’ve always dreamed of living in?

Don’t get me wrong; there are wrong choices. Or at least, choices that have outcomes that are uncomfortable, and steer you away from your Purpose. But even if you’re going to make a wrong choice, you need to do it with an open heart, knowing that part of being alive is that you have complete autonomy over what your body does and does not do. You might have to make accommodations for things like disability and disease, but if you want to sleep 18 hours a day, you can make that choice. If you never want to see the sun again, you can get a graveyard shift job and only shop at 24 hour grocery stores at 4am. Nothing about your life is written in stone – not even what the Gods want you to do. We understand that you always have the right to say no, to choose something else, and then it’s our job to meddle and push and try to convince you to make a different choice, but there are plenty of people we approach for one reason or another who just ignore us, convince themselves we’re just a manifestation of mental illness, or purposefully choose to do something else because who wants to be in truck with an Invisible thing that might tell you what to eat, what to wear, what job to take…it feels like you’re surrendering that choice when you take on the yoke of working for us, but even in that we know, and honor, and are appreciative of, the choices you make that benefit us.

People say they can’t meditate, and you know the truth – it’s more that they cannot find a way to choose to meditate. It’s not like it’s a terribly difficult skill, and it’s easy to get better over time, but it means making that choice, every day, to set aside time to do it. People do this about prayer, about going to rituals, about celebrating their faith – they think that spirituality is a frivolous task, only to be undertaken by force, habit, or boredom. The reason we keep reaching out to people like you, Del, is because you can be living proof that choosing a life that puts spirituality at the top of the priority chain can still be a full and enjoyable life. So when you get together with your friends and gripe about what the Gods ask you to do, you’re working against this very simple Purpose.

This transitioned into talk about my friend Jon, who factored heavily into my experience with Hel, and I’m not ready to talk about that yet.

I want to share it with you. And I will. Over time. In pieces. As I get to better understand them, and glean what needs to be shared from what should remain personal. I am honored that you’re interested in what happened, that you don’t just dismiss the idea that something significant happened to me that day, but I need more time to write it out.

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He’ll Look Around the Room; He Won’t Tell You His Plan

January 1, 2013 at 1:59 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Spiritual, The Journey Towards Diagnosis, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , , , )

Maybe it’s all the opiates, but I keep wanting to say something profound about how this year was full of upheavals for me and sound all poetic and mystical and intelligent. But really, I think it would just be rehashing stuff I’ve already said and done, and after surviving my ordeal I have very little desire to look backwards anymore – at least for now. I am choosing to look towards potentiality, towards the empty status update box, the (mostly) empty Google calendar, the blinking cursor at the beginning of the open Word document, and taking a nice deep breath.

A lot of my recent Underworld journey* put my feet on a very specific path, and the first step, 2013, is about being a year of contemplation – and really, things have all fell in line to make that very easy. I’m moving into a house where I will need much less help taking care of myself; both in that it is all on one floor and therefore I can make my own food, do my own laundry, and the like, but also because I will be living with my full time slave who receives such joy in her service. (And boy howdy does it make a difference when someone who you rely on for assistance does these things with an open and happy heart, rather than a resentful and lazy one.) I have much less teaching commitments, and I’m not really planning on chasing down more. (My plan is to submit to events I’ve never taught at before, just to see what’s out there, and possibly choose to ::gasp:: attend a few new things, too.) I have enough money to pay my bills and just a little extra to have a nice day now and again. I have the ability to focus on doing a little more work from home when I need more scratch, and a little less when I don’t.

Except for the all the follow up doctor’s appointments and the regular medical merry-go-round, I really don’t have a lot of reasons I have to leave the house. I mean, I love my friends and will want to see them from time to time, but there’s something to be said for the fact that we looked really hard to find something in the much more accessible city of Frederick, only to end up in the much more out-of-the-way city of Hagerstown. A casual trip to Baltimore or DC would be much more of a drive now than it was before, and we really only have a handful of friends who live less than 30 minutes away from H’town. On top of that, we found a tiny little complex that’s mostly meant for senior citizens (who were cool with us moving in when they found out I was disabled), so I expect our neighborhood to be quiet and respectful as well.

After the crazypants monkeyhorseplay that was 2012, the idea of spending a year in sacred contemplation sounds absolutely, well, divine to me. I know it scares some of my closer friends and lovers, because I do have a tendency to cocoon away from the world and not notice how long I’ve been gone until someone comes in and pulls me back out again. But I will have to find a balance, because I need this time of quiet, stress-free thinking and feeling if I am going to truly figure out what happened to me on Dec 28th.

I know many people are waiting with somewhat baited breath to hear about what happened to me and why it was decided that I was to return to the land of the living, but unfortunately it’s going to take me some time to piece it all together. Instead of something like having a dream, or even a living/waking experience, it was more like I came to in ICU with a head full of foggy memories that weren’t there before, even though I didn’t have the physical connection to those memories. I am fumbling at words here, and most of the examples or metaphors I would use might only serve to confuse the matter. For those of you who have had ecstatic trance experiences, or dissociative episodes, or perhaps even possessory experiences when you were the seat/horse, it kinda felt like that – like you’ve come back to your body, and you know it’s seen and done things that your consciousness wasn’t present for, but every so often something triggers a memory, a foreign thought, that feeling of being right on the tip of your tongue but not quite there.

Luckily, Rave was at my bedside and ready to jot down notes of the things I remembered in the immediate hereafter, when I was still in ICU and hadn’t yet fully realized what my brush with death was. I just had all these memories that both did and did not feel like they belonged to me. Like I said earlier, I’m grasping at words and failing quite a bit.

Over the next few days, I did some talking to various mystical types who were able to just listen to what I had to say and give their insight when they had any. I know when I get to the new place and set up my altar, some of the images will coalesce. When I get time to journal freely, and to get back into a meditative practice, and do all the shaman/spirit worker type things I have been putting off for a while now, it will all come into view.

So for now, I leave you with two thoughts based on my Journey:

1. Everything you do is a choice. You may feel like you have no say, like it’s the proper thing to do, that it is required of you, but in the end, the only things you have to do is “stay black and die!” (-Joe Clark, Lean on Me) That is, everything that is outside of your autonomic system is a choice. Spend a day being conscious of all your choices, every one. Do you always drink coffee that way, only because it was the way your mom drank coffee and so that made sense to you? Do you have to be someone’s girlfriend just because you slept with them last night? Do you know why you chose not to shower today, why you put your hair up, why you were mean to your coworker? Think about it, and become painfully aware of every single choice you make, and wonder what would happen if you fell out of step, made a different choice, went in a completely different direction?

2. Every time I go into surgery, I get a song stuck in my head. I have no idea why this was the song of my panniculectomy, but it was also heavily used as the background music for my Ordeal. It is “Pumped Up Kicks” by Foster the People. It is about school shootings, so that you’re trigger warning.

I like this second version a little better; and yes, I first heard this song on The Voice. Sue me.

 

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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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Living and Dying At the Same Time

December 6, 2012 at 2:40 am (Death and Dying, Living, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

This is one of those entries. I have a thought, something not quite formed into a fully functional idea, and before I’m even done having it I can feel Mr. Goatypants breathing down my neck, pushing his fingers into my discomfort, and I know in that moment I’m going to have to write another one of those blog posts that I don’t feel entirely comfortable sharing with a public audience. So there’s your disclaimer.

As I’ve said here and elsewhere, on December 28th I am scheduled for a fairly risky surgery that the doctors are being very clear with me that my survival chances are not 100%, or even 80%. I have found it difficult to write about all the stuff that’s been going through my head, because I really don’t want people to think I’m some melodramatic queen with his hand glued to his forehead running around hollering “Oh, woe is me! Woooooe is me!” It’s not like right now, sitting at my computer, I am the typical picture of someone facing death; I’m not sickly pale (at least, not any more that usual for this Irish/Germanic redhead), I don’t weigh 90lbs with a yellow pallor to my skin. I look like everyday normal Del, walking and talking like usual. The only clues you’d have that something is amiss is that I might walk a little slower than normal for me, or I might be using my wheelchair a little more often; maybe you catch a glimpse of the large bandage on my back, or a lump in my pants where my rather large drain is hiding from view. You might see me grimace in pain, or rub my belly to help get through a cramp. But there are lots of days when I could be at a party, or shopping in the grocery store, and you’d have no idea that with every breath, I’m contemplating my death.

I’m also aware that I’m going to feel like a pretty big dolt if I come through the surgery with flying colors, regardless of whatever spiritual journey my soul takes while I’m under anesthesia. I mean, we can all hope that the on-call cardiologist will be sitting there reading the Wall Street Journal (or, if my life is at all predictable, 50 Shades of Gray). Instead of a 12 hour marathon, it has a chance of being a 6 hour jog. With luck, I’ll only have to spend a few hours or a day in ICU to stabilize, rather than the grim prediction that I will wake up on a respirator and take days to come off of it. I will feel incredibly embarrassed if I got all emo about things, only to find out it was a normal day at the office for everyone.

I’ve also been kind of vague as to why something as ho-hum as a tummy tuck carries all this risk for me. I have my reasons, and the biggest one is it’s (finally) a detail that Baphomet has not forced me to share, and I’ve learned to take my privacy where I can get it. I’ve been answering a lot of email, and started a small working group on Wiggio for those who are actively interested in helping out. They get the brunt of my Victorian wailing and detailed outpourings about how I think every single thing that has happened to me in the last four months is somehow of utmost importance now.

So where does that all leave me? Inside my head, there’s this giant grandfather clock, ticking away every second between now and 8am December 28th, when I plan to inhale from that intimidating mask (and this time, they can’t trick me into thinking it’s oxygen…fool me once!) I look at my calendar, and all I see is drudgery – doctor’s appointments, looking at apartments, finalizing my handparting with STBX, dealing with the bureaucracy involved with my shiny new legal name change – and then over the weekend, where I was very much having fun with the Boyfriend, I had a thought…

You know all those awkward conversations you have with people when you’re first getting to know them? Where you ask them questions like “If you could have any superpower, what would it be?” (Paint. That is the superpower I would want. Ask me sometime.) One of those question is usually something like:

If you have 24 hours left to live, what would you do with the time you have left?

Well, I’m pretty damn sure that in all the times I’ve asked someone that question, their answer was never “Go to three doctor’s appointments, make a hotel reservation, and check your bank balance to make sure you have enough money to pay that bill.”

So I started looking at December again. Whether or not I’m actually going to die on the 28th, who is it going to hurt to take a few chances, to get in some fun and enriching experiences, while I still have the time. I started looking at the available days I have left, and daydreamed about the fun stuff I could do.

I won’t list the entire list here, but I’ll give you a taste:

  • Go to a strip club and get a lap dance from the most attractive (or skeevy, depending on the joint) dancer
  • Go to Rocky Horror at least once
  • Make one day memorable in some way for the handful of my closest peoples.
  • Go out to a ridiculously expensive and lavish dinner. (I’m thinking either steak or sushi. Who’s in?)

Then, while I was lost making my mental list, I ran across this very thought provoking post by Ivo Domiguez Jr, on the concept that Life and Death are points on a spectrum, rather than a binary. Obviously, as someone who is a big fan of the idea of spectra vs. binaries, my eyes perked up. Although I find this post fairly basic, I’m waiting with baited breath for part two.

It made me realize, too, that this month I have to find that tipping point on the spectrum being Living and Dying. Although it’s my Job-with-a-capital-J to be “The Dying Man”, I best remember to spend some time this month being “The Living Man” too. So who is up for some shenangians? Email me! I’ll likely say yes to whatever wackiness you’re willing to drive me to!

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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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