June 11, 2013 at 2:06 am (Disability, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , )

When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing

Wind that makes the tall trees bend into leaning
Suddenly the snowflakes that fall have a meaning
Sprinklin’ the scene, makes it all clean

Maybe there’s a chance for me to go back there
Now that I have some direction
It would sure be nice to be back home
Where there’s love and affection
And just maybe I can convince time to slow up
Giving me enough time in my life to grow up
Time be my friend, let me start again

Suddenly my world has changed it’s face
But I still know where I’m going
I have had my mind spun around in space
And yet I’ve watched it growing

~”Home”, The Wiz

I’ve been spending a lot of time here in the Apartment at the End of the Universe, as my current health situation requires it. I’m still healing a wound from the inside out, in hopes that by doing so it will create scar tissue where I’ve been developing these abscesses. I’ve been attached to a machine called a Wound VAC, that basically sucks out the fluid from the wound, helping it heal faster and keeping any pockets from forming. I have a nurse who comes to my house three times a week to change the bandage and check the wound, and in order to receive that service I have to remain “homebound” – which has been explained to me as “a state in which leaving the home is very difficult or a major effort”. There’s the practical side of it – the nurse comes here three times a week, so I have to be here for those visits, and can’t make arrangements to get the same service somewhere else (which was the opposite of what I was told in the hospital, but whatever). As I didn’t know that the home nurse could be taken away if I am no longer considered “homebound”, I mentioned to her an upcoming weekend trip, and that’s when I learned that I can’t even discuss with her leaving the house on a regular basis for anything other than a family emergency or somesuch. So I’ve just been having a few “family emergencies” lately.

It is a hard thing for me to accept, this idea that I’ve been classified “housebound”. I mean, I am deeply grateful that the nurse comes here, rather than me having to make arrangements to be driven to the local wound care center three times a week. Right now, my only means of transportation during the “work day” is a woman I pay an hourly wage to drive me places, supported by a few incredibly awesome friends who drive long distances to take me to appointments when my driver cannot. I flat out could not afford to pay to go to the wound care center three times a week; they have a van they could pick me up in, but then I’d have to use either my walker or cane to get around as there would be no one to push my wheelchair around, and the layout of the center would mean a great deal of walking. Walking has become more and more difficult for me, as my legs have been both swollen and very painful to touch, much less walk on. There are days I use my walker just to get around my house, which isn’t very big.

I also have been adapting to living in Hagerstown, which is in western Maryland, not close to either where most of my friends live, or a major urban center. It’s about an hour and forty minutes to Baltimore, and two hours to DC. I don’t have any friends who live close enough or who have open enough schedules to get together to do anything fun; there’s not a whole lot going on in the general area that could be done between the time Rave gets home from work and we go to bed without a significant amount of driving. We really feel like the “…at the End of the Universe” part of our house’s name has turned out to be more true than even we originally thought. We can’t jaunt out to a Tuesday night BR class or a Frederick munch without significant planning. There’s not a whole lot for non-drinking weirdoes to do in Hagerstown outside of going out to eat, which we can’t really afford.

This happens to intersect with a lot of other pondering I’ve been doing about the concept of “home”. The last few weeks, since I’ve been trapped at home a lot (save for a couple of weekend events), I’ve been spending my solitude doing a lot of mental processing about the divorce. It sounds ridiculous, but even though I suspected something was amiss in our relationship for months before the shit hit the fan, I was completely unprepared for the reality of our separation. Added to that, I really expected how he and I would deal with our separation completely differently. He continually swore that he wanted to remain “friends”, that he would uphold his oath to be my “family”, but other than terse emails about logistics (mostly money), he refuses to talk to me at all. I’ve offered to meet him face to face, talk to him on the phone, or even trade emails, but he doesn’t even say “no”, he just refuses to respond. Any time a conversation turns from logistics to anything personal, he cuts off correspondence completely and/or only responds to the parts of the messages he wants to. I find it so ironic, because I would never have guessed that it would be me reaching out and trying to start the reconciliation conversations; I am pretty honest with people that I am very, very rarely (if ever) friendly with my exes. This is not the first time that my partner tells me that they want to be friends with their exes, but then when things end they actively ignore me and pretend I don’t exist unless they absolutely have to deal with it.

I was very hesitant to get married a second time. My first marriage was pretty much a huge disaster, where I suffered emotional and mental abuse, and the relationship-I-call-spousal-even-though-we-never-got-married wasn’t much different, although to be transparent I feel that relationship was bad for both of us in hindsight. I also constantly struggled with my ability to trust my STBX, knowing he had a history of cheating on his partner and not much relationship experience under his belt. But what happened to change my mind had nothing to do with love or romance (especially since neither of us are particularly romantic people). I really had begun to feel that he and I had created a family unit; my love for him was as much familial as it was erotic.

I have a complicated relationship with my birth family. I love my mother and my sister very much, and I talk to them on a semi-regular basis. But that’s about all I have in my corner – I never really met anyone from my father’s extended family, so I don’t have any relationships there, and my maternal family…well, “black sheep” doesn’t even begin to explain how they treat me. I mean, they try to be friendly when we’re forced to be at a family event together, but none of them call me or know anything about my day to day life at all. And this lack is something I have keenly felt for a long time – I have a whole composition notebook I filled with angsty prose and poetry back when I was 24 or so, most of which was directly about my lack of “home”.

One of the terrible things I had taken away from me when I went through my shamanic transition was that the town I grew up in, the only place that really had any nostalgic magic for me, I lost that connection with it. I used to go there from time to time and go to places I used to hang out at when I was a kid, and I would get a sense of deep love and belonging from the place. I could “fill my cup” of having a place that fed my need to have a place I knew intimately, a place where I could find my way around without a GPS or a map or Yelp or anything like that. Where I could speak to the land spirits without much difficulty, on a regular basis, and knew what kinds of offerings they liked and where to leave them. When I left NY for MD, it was like someone went back to my hometown and turned all the spirits away from me; I describe it as “tasting like ash”. It feels like it belongs to someone else, someone I used to know, but isn’t accessible anymore.

When I married Mike, we were also making a commitment to live in Maryland for at least 10 years. We had discussed it at length, considered buying a house and creating roots. Before then, we weren’t sure if we would go back to NY (since we were both natives there) or maybe hang out in MD for a few years, or what. No, we made the considered decision to created family-of-choice ties with our friends and lovers in Maryland. That’s why our wedding was less focused on us declaring love for each other, and much more focused on the concept of “creating a family”. For me, this was so incredibly important and emotionally satisfying, because it gave me something I had been looking for; a sense of “family”, and a sense of “home”.

This year, due to a lot of little and big reasons, I decided that I would start looking for new-to-me events to teach at, and maybe take a break from some events I have attended for many years. So far, it’s been pretty good; but tonight I’m dealing with an unexpected consequence of that decision. Due to the “housebound” stuff, as well as some other medical stuff going on, I am home on this night for the first time in at least seven years. This week is Free Spirit Gathering, a Pagan camping event in Northern Maryland that I have attended since 2003. This is one of those events that I don’t even contemplate when I make a year’s calendar; I just know I’m going to be there. The last few years, I’ve been the department head of their mobility and roving security department, as well as teaching a few classes. It was the first big event I attended after moving to Maryland. I know probably more than 50 people who attend the event, and most of them I consider to be friends, if not family-of-choice. I stay in the same cabin with my Leather family every year, and we all know which beds are for which people. It’s not even discussed or thought about, it just happens.

Over the past month, it became clearer and clearer that I couldn’t go, at least not for the week. I tried very, very hard to change that, because this depressive funk I’ve been stuck in would definitely benefit from being around my family of choice, being in a place/time that feels homey to me. I love the campground where this event takes place, and feel connected to it as many others do. And there is an energy that awakens the land during this particular event that I do not feel when I am there with other groups.

At the same time, many of the things that make the event feel homey were starting to fall apart. My partner Winter decided not to attend; this was the one event we attend together where we spend a lot of time just hanging around each other (rather than running from one thing to another). I understand why he decided not to go, but then we got into a very strange place in our relationship where we stopped talking. I’ve reached out to him and told him I would really like to talk, and, like the STBX, I just get silence. I decided that must mean he needs time to deal with this strangeness, so even though today is his birthday, I decided not to call even though I very, very much wanted to. I feel the lack of our connection deeply; not just the lack of communication, but like I do not matter to the Clan we both belong to – another family I have tried to make my own. I feel like decisions are made without even thinking to let me know, much less asking for my input. I don’t understand where I stand in the structure, so I have decided not to push the issue and just let things happen as they do. But I can’t say I’m happy about it.

My Bear Family, another family-of-choice I love dearly, has also declared that this year is the last that they’ll attend FSG. I completely understand this decision, as the FSG community has been very negative (and at times, downright nasty) to some of us, and it’s just best that we leave places where it’s clear we’re not wanted. However, there isn’t another event that we all attend en masse. In fact, we haven’t all been in the same place since the STBX left us. I don’t know what the future of our family will hold, as we used to have a clearer vision as to who we were and what we wanted to do, but we don’t spend enough social time together to talk about it or actually make anything happen. I’m hoping that maybe, if we mutually decide to skip FSG, that maybe we can all decide to go somewhere (an event or not) together once a year, if not more often, just so we can all hang out together.

So maybe you’re beginning to see why I feel so…divorced…from feeling like I’m at “home”. The place I live in is nice, I love this little house, but it feels so much like a “landing pad”. I don’t want to put down roots here, because I don’t like living so far away from any of my close friends or any semblance of a social life. I’ve been openly thinking about moving to Massachusetts, but I don’t know how I’m going to afford that, or deal with many of the issues that I’d have to settle before I could do that. I’d have to find a completely new medical support system. Granted, I do have a group of friends who live within a two hour radius of each other, so at the very least I wouldn’t feel quite so solitary in the sticks.

I remind myself that this is supposed to be a year of contemplation, and living in a place that feels temporary does contribute to that, as well as being forced to stay home more often. I’m just having a terrible time keeping “contemplation” from becoming “rumination”, where I start to think about all the things that have gone wrong in my life in the past two years and how I ended up where I am now. A lot of my current situation was not by choice at all – I did not choose to move to Hagerstown, it just sorta happened. I did not choose for my STBX to completely cut me out of my life. I did not choose to develop new illnesses that make leaving the house even more difficult than it was before. I did not choose to have my financial situation tank quite this badly. I don’t want to sound like I was just standing there while all these things happened to me, as though I had no control at all; I know that’s not true, but that’s another contemplation/rumination issue again.

So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve? Is anywhere ever going to be “home”? Am I ever going to look at a mountain, a river, an open sky, a horizon and know that this particular place sings to me like no other? Am I ever going to collapse into a bed and really feel 100% comfortable to be myself in that space? What do I need to do to make these things happen? Is it worth it, if I think I don’t have much time left?

I have this (pretty standard) desire to die “at home”. I absolutely do not want to die in a hospital. I want to be somewhere I feel totally comfortable, where I feel loved by both the people and the vaettir of the place, where I can release my attachments in the safe knowledge that the love I feel will go with me to the other side. And what I’ve realized this past month, is that I don’t know where this place is, or who will eventually end up being in that circle. It’s tempting to look at the people I hold close right now and know they’ll be there, but if you asked me eight months ago, I would have given you a much, much different answer than I would today. Nothing is permanent, everything is possible. I’m starting to wonder if I should just embrace the idea of dying alone, so I don’t have to worry about all the drama and heartache that goes into finding these things. I’m so tired of it. I’ve put so much work into making so many families, only to have to leave them in ruins, or be asked to leave as they outgrow me, or find out they never took it as seriously as I did, or whatever. Maybe this is why when I reach out to my ancestral line, I get crickets. I belong to no family, I have no line, I have no home.



  1. Elizabeth said,

    Speaking from my own experience, being “homeless” isn’t necessarily the yawning abyss that it might seem like at first. There’s a certain kind of freedom in not having too many attachments to places you might have to suddenly and unexpectedly leave, anyway. I’d rather not feel homesick for years over a place I lived in and let myself get too attached to, which is what happened after I left Colorado 😛

    But that’s just me. I’ll be the first to admit that the concept of “home” as you’ve described it is pretty foreign and somewhat unwelcome to me. I won’t even go into why “family” seems like an even more alien idea in my world. I really just wanted you to know that I’m listening over here.

  2. Kate said,


  3. Heather Freysdottir said,

    I dunno what to say, other than I’ve wrestled with similar issues myself – my health things are a little different than yours, but there are times when I’m stuck inside, too delicate to travel. My friends are launching a new Pagan retreat, but it’s not disability-friendly enough for me to stay there, and it’s too far from home for me to go, have a respiratory emergency, and get safely to medical attention or even to just get home in time. You have my sympathies.

  4. Monster Alice said,

    I sympathize with you about missing FSG. I got cut on the sharp edge of the employment conundrum; when one is employed, money is available, but the employer controls your free time; when one is unemployed, free time is plentiful, but lack of money controls what you can actually do.

  5. Divine Twin Diversions said,

    The one-year anniversary of my second divorce just occurred Friday. Your questions and ponderings sound very familiar. I don’t have answers; hell I don’t even have all of the questions. I’m just trying to muddle through myself and keep life interesting and meaningful in some way.

  6. panoptical said,

    I’ve wandered from place to place and floated in and out of social groups so many times that it’s become part of my identity. That, in itself, is comforting – the idea that I can learn a place, and adapt, and make anywhere home just by imparting some part of myself onto it.

    Not to go too far into it, but this has been the case since I was 17 and my parents moved into a new apartment without listening to my input or taking my needs into consideration (it added considerable time to my commute to school and work, for example, so these were not trivial teenage whims). Partially because of my anger, I just never really felt at home in the new place, and have spent basically all of my time since then actively avoiding living there at all costs – whether it was crashing a dorm for semesters at a time, moving in with girlfriends, or going to Georgia. It weighs on me, but it’s been almost half my life now and I’ve figured out a way to make it work.

    In retrospect, the places that were most like a “home” to me were the places where I was most able to express myself – the places where I was safe to be who I wanted to be without having to be on guard all the time or always having to please somebody else. Having friends, connections, shit to do to alleviate the boredom – those are all good. But having autonomy and creativity is my gold standard. It seems like the lack of autonomy is a big part of what’s getting to you, too.

    Here’s something funny: I haven’t really felt at home over the last year in large part because I have had to wear house slippers. It’s just a Georgian cultural thing, but now that I’m back in New York I walk around my house barefoot, or in socks, and that makes me feel more at home than anything else.

    I think you can find a home. Maybe it won’t be a river or a mountain, but a habit or a mode of thought. A ritual. While you’re contemplating, maybe introspection will yield some set of little things that you can do to really enhance your sense of being home.

  7. EVCelt said,

    I wish I had answers to your questions. But I am here and listening at least.

    It was good seeing you at FSG- both having a (far too brief) chance to talk, but seeing you teaching one of your new workshops… with a large audience rapt on your words, and your engagement and enthusiasm showing.

  8. Hillary said,

    “So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve?”

    You are not monstrous and you are not non-human. My impression is that your brain knows this, but you’re speaking from that deep-down, small child who’s afraid of abandonment place. Maybe it would help to have rational adult-you sit down with scared-you and reassure them that you are loved, that you are lovable, that you are as human as any of us and less monstrous than many humans (giant blood aside).

    As for meant to have a family, families evolve. Sometimes there’s more people, sometimes there’s fewer. Creating an intentional family is great, but when that changes, you feel a sense of loss. It’s not a dichotomy of yes/no family, but who and where they are at any given point.

    And Del, there is no way that you will die alone. You may not know who will be there, but you have so many connections and people who care, even if you can’t always feel them. Even from here, well outside your life, I can’t imagine a world in which all support abandoned you.

    • Del said,

      I understand the tone in which you meant it, but I have to take exception with anyone who denies or belittles someone else’s self-identity, especially when they don’t know the person well enough to really know if it’s a matter of self-denigration or a hard earned title. To me, telling me I am not a monster is exactly the same as telling me I am not queer. Both words are primarily used as insults, meant to make the person feel bad about a part of themselves that isn’t acceptable to the mainstream. As a child of Loki, I am as much a monster as Fenris or Hel. I look at them and see beauty, and purpose, and power. That’s what I see when I use the word “monster”, as well as most of the nonhuman Sesame Street gang. It’s the qualities and judgements that *other* people put on the word that make it an insult.

      As for being nonhuman, again, would you “reassure” someone who identifies as otherkin, like an elf or a dragon, that actually they are really human? It comes across as condensending, with an added layer of “I know you better than you do.” Again, I can see how you might have thought that I was somehow putting myself down with these terms (like when I call myself “fat” and someone jumps to say, “Oh, Del, you’re not fat”), but as this is my blog, a place where I have written about my identity as a monster before, I feel a little hurt that you felt the need or right to correct the words I have struggled long and hard not only to accept, but to love about myself. Being a monster makes me a better shaman, a better ordeal master, a better friend. But it is a part of me like my queerness, my transness, and all the other parts of me that make me uniquely qualified to do the Work that I do.

      • Hillary said,

        I apologize – I completely misinterpreted your points and where they were coming from. I haven’t read all your blogs or seen you use those to identify with so I didn’t realize they were positives. You’re right, I wouldn’t “reassure” someone in those contexts. I was completely off base and you’re free to delete the comment if you like. I assure you I did not intend to patronize as i deeply respect you and any identity you claim.

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