The Hidden Blessings

June 27, 2012 at 11:42 am (Disability, Living, Living With Chronic Illness)

Sometimes being chronically ill is a good thing. And it can be bigger than being able to park when the lot is full otherwise, or not having to wait on the long line, or having people respect your need for a nap. There are some life experiences healthy people never get to have. This Cracked article sums up five great joys of being sick very well:

5 Great Joys In Life that Healthy People Never Experience.

I invite you to add your own in the comments. What blessings do your challenges bring you? What experiences would you have lost if it weren’t for disability? What lessons have your illnesses taught you that you would not have learned any other way?

For me, I learned how to accept help. I used to hate when people offered to carry things for me, because it made the assumption that somehow I was unable to do so. I would always get up and get my own drink so I didn’t have to trouble anyone. But over the last few years, I’ve learned how to accept and recognize gifts of service as being just as wonderful and heartfelt as physical gifts. Having someone come over and do my laundry is sometimes nicer than getting something physical I wanted. It took me a very long time to see that, and to love it, but now I not only receive service well, I give better service because of it.

 

 

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Letting Go, This Time For Real

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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When I Die: Two Services

June 11, 2012 at 1:30 pm (Death and Dying, Spiritual, When I Die) (, , , , , , , , , , , )

As I have been involved in the planning of two separate services for my friend’s death, it made me think about what I would want. My friend actually got three; one for just his family and close family friends, one that was open to anyone who wanted to come, and one for his religious contemporaries.

Since Ninja and I had a “Renaissance wedding” in order to hide the more pagan elements from my in-laws, I get why there might need to be a few different celebrations of life.

I am making it clear that I want 2, and only 2, services; I want a proper funeral, and I want a celebration of life. Anyone and everyone can self-select as to which ones they attend, but they should go to either being ready to face whatever they may learn about me from those who attend.

The funeral will be a somber affair. Its primary goal is to give people who are grieving my death a place to gather and support each other. It will happen shortly after I die, basically as soon as my ashes are obtained. I’d like it to be in a sacred indoor location, but no appropriate ones spring to mind. Someone’s house would also do. It should be officiated by Hugh Eckert, Wintersong Tashlin, and Raven Kaldera. I know they’ve never worked together before, but I’m sure they’ll come up with something appropriate. It should be in line with my religious and spiritual beliefs – don’t make my in-laws smother on the Paganism, but don’t hide it either.  (I figure at that point I’m already dead and therefore what does it matter anymore?) It should be family appropriate and solemn. Ninja’s religious views should also be taken into consideration, and if he feels strongly that he would like a rabbi involved, I say do it. After all, the funeral is more for the living than the dead. I’m sure we can find a rabbi who can work with Hugh, Winter, and Raven.

The second service should be a celebration of life. This will be more for those who wish to memorialize me through story and song, who want to recount the crazy adventures I’ve had through this life. There should be alcohol in horns being passed around and bawdy stories of how great I was in bed told. No holes barred. People should be warned that if they’re uncomfortable with any aspect of my life – my trans identity, my Invisible People, my kinky sex life, my poly partners – they should stay the fuck home. This is me in full technicolor, for all to celebrate and bask in. I want the movies I made playing in the background. I want Raven to sing Skullcrusher Mountain. Nick Nigro has to be there, and has to tell at least one crazy Del story. There should be a division of my sex/kink toys – maybe even a raffle to donate to a charity I would have liked. I’d want this to be in an outdoor location where day turns to night and frivolity turns into drunken, tired people surrounding a campfire pouring libations to me into the fire. If it’s appropriate, I’d love it if it were at either Cauldron Farm or at Ramblewood. This celebration should be officiated by Elizabeth Vongsivith (whose last name I can never spell right), and she should wear her Fools dress. She knows which one. Also starring Rebecca Proch, for which the only funeral I can imagine her officiating. She will decorate it to the nines!

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My Achilles Heel: Answering the Call

June 6, 2012 at 11:47 pm (Living With Chronic Illness) (, , , , , , )

I  was talking to someone tonight, and he said something that really disturbed me. I couldn’t react at the time, but it is wiggling around in my brain and I have to let it out. Also, I realized it’s time for a new blog post this week and well, I haven’t written one. So here is a completely impromptu blog based on the idea of communication.

I outright suck at communicating. It’s not that my words are hard to understand, or that I can’t guide people towards understanding what I mean. No, my problem is more simple than that. I just don’t return calls/texts, answer emails, respond to Facebook messages, and other sorts of reaching out. I have no way of knowing if I actually do get more of that sort of stuff than the average person, but it seems as though everyone else in the world has time to write well thought out emails and call people and whatnot, whereas I just don’t. Honestly, it’s a very high spoon activity for me – I not only have to have the energy/ability to engage in the media (phone/computer), but also enough focus and attention to write a thoughtful answer. Jotting off a Facebook status or a reply to a Fetlife group post takes less than a minute. Writing a well-worded thank you letter can take an hour or more.

What’s frustrating for people is that they have proof that I’m reading the forum of their message – posting to Facebook, writing other emails, etc – yet I do not respond to them.

Admittedly, this is a weakness of mine. I don’t know if it’s a fixable one. I do my best. My inbox is always above 200 emails, not counting ones I’ve actually taken the time to sort into folders (not answer, mind you, but just sort). When I do get on a tear, though, and if I think it’s appropriate, I may answer an email or return a call months later. I do care, and I very much recognize that people have taken time out of their day to reach out to me. I honestly wish I was better at it.

Here are some ways I try to make my communication count:

1. I only answer the phone when I know I am up for a real conversation. I will “ignore” your call when I am feeling crappy, or tired, or stressed, or in any other way that will make our talk less pleasant. This means that I answer much fewer phone calls than I get. I also don’t answer if I’m not in a time or place to have a conversation – like while I am at an event, or spending time with a friend or client. This means that I sometimes can’t return a phone call for several days, or even weeks, in order to meet the criteria. And then I get caught up in the “well, do they still want to talk to me?” conundrum.

2. When I talk to people in person and we decide to follow up via email, I do my best to make it their onus to start the email volley. I know for certain that I will either forget or put it off, so by asking the other person to take initiative it means at the very least that I will get a written reminder of our intent to continue the conversation.

3. If you really want to talk to me in a short time frame, your best bet is to email me and tell me that, and give me your number even if you’re 100% sure I already have it. When I am away from home, I still check email religiously, and it’s so much easier for me to click on your number and have my phone dial it straight away. If things are time sensitive, you also need to tell me what that means. Deadlines are good for Dels. So if you need an answer from me by Friday, tell me so. At the very least, you’ll get a “It’s Friday and I still don’t know, can I get back to you on Monday?”

4. Please understand that I want to give you the best Del I can. This means that there are sometimes long stretches of time that I shy away from general social niceties and the like. I still read my email, and listen to most of my voicemails, even if I don’t respond. For each day I am away from home, it takes me three to recover. And being social, even via the Internet, isn’t part of my recovery.

5. Know that even if you see me posting blog stuff or status updates, I may still be low energy and feeling terrible. I use the Internet for distraction when my pain is bad. I would hate to have to give that up because every time I post a tweet someone whose email I haven’t answered gets a little more depressed. It’s SO not the same thing for me.

6. I do care about my friends a great deal, even when I’m not very demonstrative about it. I read what you write, I try to comment when I can, I peek at your social media, and I like knowing what’s going on with you. Just because I don’t call or email you directly, doesn’t mean I’m not engaged in your life in some way.

7. If it’s been a while and you haven’t heard from me, you absolutely not only have my permission, but my encouragement, to write me again and tell me so. Never, ever assume that I don’t care, or didn’t have anything to say, or am ignoring you. Chances are high that I couldn’t answer right away, and then life got complicated, and I forgot. Reminding me will make me feel better about the situation, not worse.

8. If it helps, you can send me Google calendar invitation to “events” that are actually phone calls/chat dates/email deadlines. That way, I’ll get reminders and know to plan my day around that.

 

If you have other ideas or thoughts about how I can be a better communicator, please leave a comment. If you’ve sent me an email or left me a voicemail and I haven’t responded yet, please remind me.

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