And Finally...

Final Prompts from HWAMC:

 You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned?
 Describe your HAWMC experience in one word!

Recap: April has been an extremely transitional and often uncomfortable month. I transitioned away from two months of dog-sitting in a comfortable, large, somewhat remote home. My grandmother, who is very important to me, died--age 93 and ailing, but suddenly nonetheless--and I found myself dropping everything, including an enormous amount of money, and flying to Israel. Then I returned to AK, spent less than two weeks alone in the water-less cabin that has been my home for several years and is no longer, and thence out to Athens, GA, where I am now. Even without the extra trip provided by those few days off my meds, the month has been a whirligig of displacement, recollection, keen emotion, and uncertainty for the future. Nonetheless, there have been some glimmers of optimism toward that future also. 

Additionally, I finally got my own domain and started this wordpress blog, as I'd been talking about doing for about two years, thinking I'd have time this month to learn/teach myself how to do all sorts of things to make it just how I wanted it, as well as migrating the original blog over here.

Was I crazy? I don't even have my blogroll in my dashboard, let alone the comments set up, such a big reason for me to move... -- But therein lies much of what I've learned in this month. Life is full of ironies, and:

• No matter how pretty or not-pretty it looks, the blog comes with me everywhere.
• Sometimes having a prompt helped get me to write a post even when the day was basically over; other times the prompt was a turn-off to my creativity.
• Paradoxically, I think I may have lost readers during this process. I don't think anyone has come over to my blog from HAWMC either. Paradoxically, I'm not feeling too hurt right now. As I breathe life into this new blog, I draw on my new sensitivity to and understanding of audience/readership and feel I'm honing it even when I suspect no one's reading at all and 24 out of the 24 comments I receive are spam trying to make my nonexistent readers buy sunglasses, solar panels, or penises.
• Despite being a constant companion, my blog hasn't taken over my life, not remotely. But I think I only skipped one day the whole month, this past Sunday, despite all that long-haul travel.
• I'm learning how to talk frankly and openly about having bipolar disorder and beginning to recognize that if I am willing to be frank and open, my eloquence as a writer may turn out helpful to others. May turn out to be helpful to me, too!
• I'm (back) in the "Well, I don't really have anorexia" frame of mind. Do you think I do?

Prompts: I liked the "day to day" prompt because of how it invited us to look at our conditions integrated into the rest of the world and life, as they in fact are. Adversity the day before got me going, so perhaps I liked it in that sense. I didn't like the prompts about social media and making compilations of those. I'm simply too ignorant.

The HAWMC experience in one word? Sidewinder.

Huzzahs and Back Slaps; My Trifecta of Talents (?!)

HAWMC Day 29 Prompt: Congratulations!

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

I just slipped up and failed to produce a post at all yesterday, because I stayed up working instead. The night before, I had to leave my post unfinished because i was asleep. To be fair, I had just flown to Georgia overnight (hey from GA, btw!) and had brought work with me and worked late.

Then I slipped up again. I determined almost a month ago that I need to give my body a break from chocolate. When it goes in my body, it's only producing compulsive, out-of-control feelings as well as self-destructive urges and physical discomfort. This happens every now and then with chocolate, I know it, and the solution is simple. Don't eat any chocolate for a couple months, dummy! So, what did I do this evening? Ate the small remaining amount of chocolate I'd self-sabotagingly brought with me, having eaten the rest of it previously. Yes I know I was running a cal. deficit, which made me vulnerable to the chocolate siren (what an image that is). But it's hard for me to forgive myself when I do that.

And having failed as a blogger and as a self-disciplined restricter, I'm supposed to toot my own horn? Where are the beans???

Well, nonetheless, I'm always game. Okay, three things I love about myself, am great at, or just want to share. (That last one's a cop-out, isn't it?)

1) Today was my first day interning at the Georgia Review and I loved it like it's what I'm meant to do. I spent the day looking at manuscripts that had been submitting for consideration at this wonderful literary journal. I got to see what kinds of things were getting submitted and also what kind of reader I am in this context. I love it. I'm excited for the next two weeks; I can already imagine I won't want to leave!

2) I am so grateful that I'm such a great traveler. My psychiatrist said it's probably one of the only good effects of being bipolar. I hadn't made the connection but I'm sure she's right (except "only" seems pessimistic). I don't get jetlag. Yes I'm anxious by nature, but usually when something goes wrong on a flight I'm the one turning it to funny or reassuring other passengers. One time a flight from Amsterdam to Athens, Greece, was delayed when we were all on the plane already, and a lot of Greek passengers were panicking and others were going in the toilet to smoke and the poor Dutch air stewards were wringing their hands. I ended up interpreting--the Dutch folks couldn't speak Greek and the Greeks couldn't speak English, but I could speak Greek and the Dutch ladies could speak English...and we worked it out. 

And actually that last anecdote is 3) I am so grateful that I love languages so much; that even at times in my life when I haven't played with language as much, it's been there for me. Nowadays, I'm even more grateful that I'm taking lithium, so that I can know there is a felt world beyond language. Until then, language and words were all there were for me, they held the place of parseable emotion. Now, the world is velvet-richer.

Dear readers, please tell me your three!

Needing Some Extra Prompting...

Today's Prompt:

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health.

When I first saw this prompt, I couldn't imagine what I might write about it. All I could think about was that just like blind and deaf people sometimes have service dogs, some epileptics have a service dog that can sense if they're about to have a seizure and prompt them to get to somewhere safe. All I could think was that I should have something like that too. Well, as we tick-tock past midnight even here in the far far west, I'm going to run with that idea. The mood-stabilizing meds I take were even developed originally as anti-seizure meds, and funny Dr L. at Foie Gras Farm thinks bipolar--and other conditions too--are really seizures, as mentioned before.

And it turns out I received two indicators today that I really could use some sort of seeing-eye dog gizmo--on my phone, on which I rely a fair amount, or somehow implanted in my psyche. I received two messages today that I need some better moment-to-moment oversight and reality check. Namely, I had negative feedback on my work from two different employers today, both of them on work I'd done precisely when I was off my meds last week.

The translation job was no big deal, not really about quality of work. Translators submit work done in batches, and I had accidentally submitted several entries I hadn't actually done. So those got sent back to me, I translated them, submitted them, and all was well. But it was still a boo-boo.

Worse was my editing work, where I had missed some stuff I'm paid to notice and fix. Which then reminded me of a mistake I'd made in another document as well. It's extremely important to me to be meticulous with my editing, both because it's extremely important to me that my client have a flawless product and (obviously) for my own self-esteem and sense of worth. It's not okay that I provide a service that's inferior in quality. What makes it even worse is that this particular editing is work I'm subcontracting for a friend. Working for a friend, having a 'boss-employee' relationship superimposed on a 'friends' relationship, is an act of faith and courage for both of us. When I fall short of my high self-imposed standards, I'm letting down a friend as well as a boss. When my friend, who is extraordinarily good at what she does and also has extremely high precision standards, receives substandard work from me, she has to avoid judging me as a person as well as an employer. Thankfully, my friend is one of the best people I've ever known at compartmentalizing, but I still have the fear of showing up in a bad light.

What should I have done? Should I just have not worked while I was crazy? I'd have had the long journey as excuse, even though everyone knows I don't get jetlag and am a phenomenally good traveler. Obviously, I should have stayed on my meds. 

As I've been gathering together my things for my semi-long trip to GA coming up so soon now, I found in a drawer a sticky note from my naturopath from years ago reminding me that everyone with bipolar decides to go off their meds and that it's a bad idea. So, some sort of seeing-eye dog that forces on my awareness the content of my naturopath's note and follows through on it. And then if I still go off them, or if I have an episode even when I'm on them (as happens), this gizmo, this virtual seeing-eye dog, will remove me to a safe place, away from old beat-up vehicles, sharp knives, work I won't be able to do to my standards, and other dangerous objects.

Source: http://www.myaudioschool.com/wp-content/uploads/2009/06/FLS-Drop-of-Water-falling-from-a-piece-of-ice-photo-released-to-public-domain-by-its-creator-Jonas-Bergsten.jpg

So, how about some context and compassion? I am leaving tomorrow at 7am. I'll be in Anchorage for two days, floating around, and then will fly to GA for three weeks plus. When I get back here, I'm moving. So I've been tidying, gathering, consolidating, packing, shopping...and also had a therapy appointment, a meeting, and several important errands. Additionally, I've been working on two editing jobs, one in MLA, one in APA, two different computers going. It's been crazy. I have done so well not melting down. I have done so much today and am not done yet. I may make one or two mistakes I wouldn't normally make in my editing, although I cringe to think that. I will do my best. And at 6 tomorrow morning--this morning by now--I will have had some sleep, and I won't have more than twenty minutes of stuff to do before I'm out the door and on the road. Don't I deserve some compassion? And a sensing gizmo?

Celebrating Everyday Precarity

 Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked,

that fuels your activism.

Today’s prompt was recommended by Abigail of http://hiddencourage.wordpress.com/

Something simple and everyday that's inspiring to me...something most of us, well or sick, handle almost every day...something that flows; ebbs, too...something many of us worry about inordinately...Today I'm going to take a brave step (yes, I say so myself) and give thanks for something I'm about to step into huge uncertainty and precarity around: MONEY, and specifically HEALTH INSURANCE!

I've never been close to wealthy; in fact, in Hawaii I lived on next to nothing for a few years. And yet, no matter how much I've felt precarious and fearful, I have always been provided for. This, I know. Of this, I remind myself when I feel like the bottom has dropped out.

When it comes to healthcare, I am so grateful I have been provided for. I am sad that healthcare in this country is so monetized--perhaps one of these prompts will get me started on the sickening, sometimes life-destroying monetization of eating disorder treatment centers; the callous, sometimes warningless spot decisions of insurance companies who couldn't see the patient at all... (okay, I just deleted a bunch there for a different post, was starting to get heated about something other than my theme for today.)

As I prepare to leave for my next trip and make gestures toward tidying up this cabin, today I went through a pile of health insurance paperwork Phil had left out for me to check. Various appointments, hospitalizations, ER visits, all the way back to last Fall. Some of the figures made my eyes ache. They simply didn't mean anything in the context of people's lives. Especially non-wealthy people's lives, and people with mental health conditions are often not wealthy. There were two health insurance company decisions I need to query and one bill that needed paying; otherwise, these tremendous sums were taken care of!

This reminds me both to feel immense gratitude and to advocate for healthcare for everyone. No one should have to worry about the bill when she comes out of a psychotic episode; no one should have to drop therapy sessions because his insurance decided he doesn't need it. No one should have to pick what meds they take based on whether there's a generic or not.

And here I am, about to lose health insurance within a few months as our marriage (through which I'm insured) dissolves. My mom said yesterday that it would be a different matter if I could just "pull out of all this" and not need the insurance. Yes, wouldn't that be lovely? When I pointed out that my previous attempts to do that had not worked out well, she agreed.

Yes, I have felt, will feel, scared, worried, frightened about this. Precarious. Do you know what precarious means at its root? It means a situation that merits praying over. So, I choose to surrender, pray, trust I will continue to be taken care of, that getting my meds and other healthcare taken care of is part of the magic that comes from outside the dominant paradigm into which healthcare is dragged.

Am I crazy? What do you think?

Bonus Post from Yesterday

In case you missed it on the new blog--sorry I didn't cross-post, but I did put up a post non-HAWMC-driven yesterday, as promised.

Today's coming up pronto.

Please see yesterday's:
http://ulteriorharmony.org/blog/2013/04/18/106/

Thanks for coming with me.

Wordless Wednesday (Slog Slog)

Also at http://ulteriorharmony.org/blog/2013/04/17/wordless-wednesday-slog-slog/

Sorry I couldn't make this bigger.

Wordle wasn't working, so this came from  http://worditout.com/word-cloud/

I don't know where the day went, but everything is looking up. I still intend to fulfill the promised words post.

Sending love.

Where is the Lie? HAWMC #16

Am I able to Lie? Or is the denial too deep?

Today’s Prompt:

• Tell us three things that are true about you, your condition, or your Health Activism.  Tell us one lie. Will we be able to tell the difference?

On which side of the screen does it lie?

• I believe great art can also be great health activism.
• I believe the purpose of art is to make the audience feel the artist's pain.
• I am diagnosed with two conditions both of which hold a significant freight of denial.
• I believe the effectiveness of a medication or therapy is more important than whether it proves that I (or whoever) have the disease.

Which one is the lie?

HEADS UP: Tomorrow is Wordless Wednesday. On Monday, I promised a post about my "verklempitude" but have so far failed to deliver, perhaps because rather than verklempt I've been verrueckt! (But wait, that was only yesterday?) So, resanified (does that -ify suffix make the re- prefix redundant?), I undertake to add a wordy, non-HAWMC post to Wordless domani.

Turnarounds, Turning Around, a Negative

READ IT HERE: http://ulteriorharmony.org/blog/2013/04/15/turnarounds-tu…round-negative/

• Today's Prompt:
  Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.

I went trawling for inspiration and found several blogposts that consisted of a comment/testimonial about some other blog, as opposed to a copy-paste of a comment the author had made on someone else's blog, as I had thought was obviously the prompt's intent. There were some other creative (mis)readings too. As an editor and linguist, I have a wry appreciation for ambiguity and the ambivalence it often betrays. When I feel cranky about ambiguity's misinterpretation--see it as obtuse, careless or self-serving, that's not a good sign. As we round the turn-point of these thirty days of posts, I'm out of sorts. My recent boomerang turn-point was eleven timezones of bereavement away--one click back from halfway round the world, one click back from halfway around the month also. 

Around a turn-point? Mirror image. Boomerang. Negative. May I be negative and play against the rules just this once? (Often I play by the rules so imaginatively, I neglect to observe that not playing by the rules might be the most imaginative of all.) I plead--I am the MODEL commenter. I plead--I have commented on thousands of blogs with the devotion and attention of a fan. I plead--I have commented with devotion, attention, and generosity, sometimes daily for months on end, sometimes in nurturing an enduring and treasured friendship; sometimes, to be rudely and persistently ignored (I've learned some things--the latter circumstance hasn't happened for years, and I no longer consider daily commenting on every blog I glance over to be mandatory). I plead--as hard as I find  reaching out and being outgoing "in real life" through air with no optic fibers, I am not challenged to go comment, to write out loud, to reach out.

If I fail to comment today, it's out of respect. Listen, I stink. My head's uncovered, which means it's picked raw, like all my fingertips. I'm cramping and tic'ing like a spasmoid puppet. I'm off my meds for the first time in a year (more?). The total absence of appetite is delightful (although my blood sugar still moves, inconveniently), and the almost total unmooring from linear time is soothing (although time still moves, too). The cramps and sweats and tics and halluc's are not soothing. Furthermore, I am not fit to be around people. I snapped at poor Phil-in-Oregon, although to be fair, this was on the third iteration of him calling, saying hello, and then "whoops, gotta go" literally in the same breath as that initial hello, with an intervening "hey, let's talk now" call that happened to come in right when I was trying to force down some dinner. I probably snapped a bit then, too. My wonderful friend who called this evening, and who said so much without too many words, who demonstrated such gorgeous empathy, thank you. The fact I can still track that empathy should in itself be ample motivation for me to get back on that lithium and ride that rock again stat.

If I do so, perhaps I can one day be the person who makes a phone call or leaves a comment at just the moment of grace for the other person. And if I do so, I have best chance of being ready for my upcoming Georgia trip without mishap. More motivation right there. I have an appointment tomorrow. Another provider I was supposed to contact a few days ago. Give me until Thursday, improvements starting even sooner.

Inspirations (HAWMC #14)

Today's prompt is a no-brainer for me. We're invited to give public thanks for some of our fellow Health Activists and what they have done, perhaps interspersed with some of our favorite posts of the event so far.

Well, thank you for the opportunity to thank Meredith for her blog! And for so much more. I came across Meredith during last year's event, intrigued by a comment she left on another rather wonderful blog (by a graduate of the MFA program I'm in, not participating this year). We got to know each other with miraculous rapidity. In addition to admiring her lucidity, transparency, and eloquence in writing about life--and life with bipolar--I learned and continue to learn from her courage, directness, and tough questions, of herself as much as of others. Her ability to reflect on her own experiences, to show her positive learning as well as the setbacks, is health advocacy of one of the most empowering kinds, especially related to a health condition as widely misunderstood and stigmatized as mood disorders are.  I so admire the levelheadedness--levelspiritedness--with which she represents both medication and non-chemical ways to help us do better. Our brains are full of electricity and chemistry, and there are so many ways, from the clunky to the fractally subtle, that they can be influenced.

Her list of Resources from day 4 of this year's challenge just blows me away for its comprehensive and smart coverage. When things have calmed down (or when I can't sleep again tonight) I can't wait to check out many of these links, and also to try on myself some of the farther-out-of-the-box suggestions.

All that aside, I connected with a friend wonderful beyond imagining, in a year in which friendships have been the air that keep my self from imploding or bursting, the threads that link my limbs to the big hook in the sky.

There's another health blogger by whom I've been very inspired for years, but unfortunately her blog had to be taken down. She's a celiac vegan raw aficionado, so very much from the same corner of the food arena as I am, and I have always been inspired and impressed with her willingness to advocate for herself, her tireless, intelligent research and engagement, and her passion. Bitt, sending you love.

Finally, obvious as this may seem, I'm thankful for the WEGO Health Blog and community for encouraging me to think about the whole concept of health advocacy in creative and useful ways both in April and beyond. It's a concept that twirls around with my literary aims in a mesmerizing way.

A little more on my own verklemptitude (way to mix a Germanic root with a Latin suffix, eh?) in a separate post later.

Today’s Prompts:

• Thank a few of your fellow Health Activists for what they have done.  Call them out by name or twitter handle.  Share your love.
• Pick a few of your favorite #HAWMC posts so far and share them with your readers!

Acrostics, HAWMC 12

See this also at  http://ulteriorharmony.org/blog/2013/04/13/acrostics-hawmc-home-again/ 

Hey, this is super late, isn't it? I've gone from having early posts to having late posts. Because I just got home to Homer this night, and it's weird. I haven't slept in this cabin for well over two months, am going to have to reacclimate to outhouse/hauling water. I'm a little wired and tweaked.

 Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase)

Funny story--in middle school, we had just started playing lacrosse. A few weeks later in English class we did acrostics. The next day, someone who hadn't been paying attention was getting grilled. Among other things, she was demanded to define an acrostic. She said "It's a stick you play on the field with." I can never hear the word acrostic without thinking of that. But what the heck word do I choose as my acrostic word? Which condition? Or which part of my formal scroll of diagnosis?

Alien in this body, alien in this world, I said

No                                                                                                                                                 

Over and over, too much or too many of me, too                                                                   

Rowdy, too much body; I said Alien no body,                                                                       

Evanescent, ever at the point of                                                                                                  

eXit through the liminal cell-gate to become                                                                              

Illuminated, illusory, not limited by physical positioning                                                          

Acting without favor or appetite

Because sometimes I am huge hugening the world and other times                                         

I am suffocated under the world contracting down from outside me                                   

Perhaps one day I'll learn to quit                                                                                         

Opposing pole with pole; stall at                                                                                                 

Luminous liminal cell-gate                                                                                                   

Acting without favor or appetite, all fall stall                                                                         

Ravishing evanescence.

And I'm going to leave it at that because otherwise I'll get up and do something dangerous.

HWAMC #12 Hindsight

Enjoy this post at  http://ulteriorharmony.org/blog/2013/04/12/hawmc-12-hindsight/ ‎

 If you could go back in time and talk to yourself on the day of diagnosis, what would you say?
 What have you learned about being a patient that has surprised you most?        GO!

The response to either of these can be the same, on a certain understanding of "diagnosis."

Here it is: They've got your number, Ela. You might believe it's the wrong number, predicated on their system from which you wish to be a fugitive except in the case of incipient organ failure. You might not want to be reduced to a number. But the same number will keep coming up whenever you encounter "their system." Does that consistency tell you something? And listen up: here's the second part. Some of what they offer up is actually going to be helpful to you.

Yes, "they" "got their hands on me" when I turned myself in with incipient organ failure, couldn't stand up again after I got there, etc IVs in nonexistent veins etc no blood pressure etc ng tube etc... But within a couple days they had diagnostic paperwork for bipolar, and also for borderline, that they wanted me to look at to see if I might confess to one or book myself into the other. I was so mad, I wouldn't even glance at either one. All I wanted was for them to stand me back up on my feet and let me out so I could carry on not-eating, driving dangerously, climbing walls, etc. Three more months of treatment didn't do much to change that, but the realization did eventually dawn that if I wanted to be part of society in any broader or more universal way, I needed to be more than just barely on my feet. Howling/Haoleing in the Hawaiian jungle is fine for a while, but I want to be able to offer more.

So, what would I whisper in the ear of the frightened, angry, sad, very sick younger me in that hospital bed? I'd tell her that not only did these people, these "they," mean well (which she sort of understood already); they actually have some techniques and chemistries that really will help me. That if she'd opened those diagnostics and allowed these people who knew her so little to know her better, they might have offered more appropriate medications rather than blundering around with SSRIs and antipsychotics and making her even more scared of and disbelieving in medications, so that she might have had ways to feel better much sooner in her life. That diagnosis can actually be a relief, and a means to self-knowledge.

But I'd also tell her she's pretty much right about the inefficacy of anorexia treatment. She's not always going to be able to stay out of treatment, and there will be times when she stays out and really should be in. She should confess to herself that as ghastly as treatment centers are, there's a part of her that actually likes the safety and camaraderie of the experience, and she shouldn't beat up on herself for that ambivalence. I'd tell her she needs to decide very consciously how she wants to be about food and body, and should accept that that whole part of life will be tripping her up for ever, just as it always had. She needs to know that when not-eating becomes a full-time job, there's not much left to life and people turn away. She needs to know how to manage so that she's just being tripped up, rather than hovering close to death.

They got your number, a compound number, and it doesn't go away. But they are not evil, and can actually help.

HAWMC and Social Networking

Prompt #11:                                                                                                                                             Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

Apologies at the beginning--my English  is all tangled up...

I confess I'm grateful for the "push" to contribute to my blog daily, glad of the sense of regular putting out (and output) in this topsy-turvy time--my homeward journey, in which I regain the eleven lost hours and, if I make the two tight connections, get to Anchorage by the middle of Friday, starts this evening--but I also confess this is not one of my favorite prompts. The alternate prompt to the one I've featured required extolling one's favorite iPhone app related to our health condition. Well, I'm sure some helpful stuff will come out of that. And I actually have an iPhone and really appreciate it. However, most of my life I have lived far behind the technological leading edge and know very well what it's like to live in a society that expects you to have a certain technology and predicates everything on that state of entitled possession. So everyone has a cellphone, so suddenly no one can make a precise plan for where to meet. You don't have a cellphone and came all the way from another town, and it's "call when you get there," but everyone has a cellphone, right, so no one bothers to repair the payphones when they're out of order, so then what do you do? Wheedle passers-by for a quick call?

I'm just leery of focusing health activism on something so specific, not available to everyone by any means...and what about apps for other smartphones anyway?

Of course, if we get into branding, we're on the path all the way back to whether I'm an anorexic bipolar or a witch or a saint in the making, since I'm sure there are arguments that our diagnostic terms are brands of their own.

Anyway, I haven't had my iPhone long enough to explore all the wonderland it offers. As for social networks, the only one I really have spent time with is Facebook, so that'll have to be my pick. I like it first of all because I was invited to join (years ago) by a very dear real-life friend who had moved far away, and the core of my large base of friends is composed of dear real-life friends who are far away. That depth of contact/connection makes the experience real, sincere, and personal. The few FB friends with whom I don't have a strong personal connection are either friends of friends or are people from whom I can learn or with whom I might be able to share something.

The more I give Twitter my attention the more I like it. I can learn so much more, and share so much and do so much. I'm relatively new to it. Thanks to the HAWMC last year, I have a Pinterest account, but that's the extent of it. I'm not visual. And ze ma yesh...

Nu yalla chev're. N'daber b'karov...

Wordless Wednesday HAWMC #10

PROMPT: It’s often hard to like pictures of ourselves – post your favorite picture of yourself.

Favorites change all the time, just like our faces and the stages of our crosses. Many more photos of this trip to come when things are more settled.

HAWMC 9 Caregivers' Advice

I'm squatting outside my grandma's apartment trying to pick up internet and a bit of sunshine (fickle, dappled, windy today), feeling my feet go numb. A moment ago, I was staring back at a white cat with a black tail, its left eye an oddly angled slit, the tip of its right ear missing, the pink of its flesh visible under the nappy fur. Descendant of cats I've chased, stalked, befriended, begged leftovers for from my grandma, my whole life. It stared at me awhile, the novelty of a person just hanging out here, and then stalked off disdainfully. Good conversation. I've had whole conversations with nary a stammer, both in Hebrew and English, but also times when I can't get a sentence out. I suspect this afternoon is one of the latter times, but everyone else is talking loudly so I'm off the hook. The canopy is gone, the chairs are gone, the fridge is full of leftovers. (Seeing the food that came in for the big meal last night reminded me of how good the food is here and also of why I feel depressed when there's a gathering in the US with regular American food; it's not just because inevitably there will be nothing I can eat. Hint: even the peas and carrots were spiced.)

In parens, but that might just be my segue. Today's prompt solicits advice and tips for caregivers, professional or otherwise (professional advice and tips, or professional caregivers??). Fresh, fresh food, with the right kind of spice to do honor to the food's deliciousness. That's my caregiving advice. And you can take it literally in terms of what food to offer, but also in terms of how to have dealings with a person with a(ny) health condition. Both for anorexia and for bipolar, an environment of abundance would be a really good thing to create. People with these conditions (I) tend to put themselves (myself) down, be very hard on themselves, and only feel a sense of worth or right to exist if giving and doing and helping others. (Help me out, guys--is everyone like this, or just people with anorexia, or people with both? I don't think it's just me.) So, if there is an environment of abundance, that can help with a sense of safety and security, within which the caregiver can offer an environment of unconditional love and allow the person to feel and experience that she is loved, she doesn't need to be running ragged just for basic survival needs, and there is some beauty and safety in life.

Good nu?

Quick Dispatch from Israel; HAWMC Animal

My hair had been growing dreadlocks for several weeks. My mom, bless her, held out until my third day here before politely requesting I brush my hair. Several short weeks of growth. Two hours long hours combing out a pile of hair and skin into my lap. And my teens are just about beyond their half life. 
Greetings from Israel. Mourning is an action here, "sitting" for seven days but with a complete infrastructure of receiving guests, visiting, morning and evening prayers, hospitality--provided by relatives other than immediate family (who are children/siblings/spouse)--grandkids like me are not "immediate" so we get to be hospitable, which is very lovely, but days are very long. People come who are uncles' friends, old classmates of my mom, second cousins I haven't seen since I was seven, and then of course the very familiar faces, although even since I was last here eighteen months ago some of my cousins have had more kids.                                                                                                         

Everyone brings what they have within them at the moment. Some have tears. Some have memories and stories. Some have talk of politics or renewed religious feeling. Some have jokes, and it is good to see the mourners snorting with laughter. So many people have been here, I sometimes lose track of what happened on which day. Of course, my 24-hours journey with eleven-hour time hop with language switch probably augment that disorientation, since half the time I'm even on a different day than I would be back in AK. But with all the social fuss happening in the canopy outside the apartment, I keep expecting my grandmother to be inside, keep wanting to tell her "Do you know who was here? Do you know what they said?" My mom has expressed exactly the same feeling, and I suspect we're not alone in one way or another. 

I don't even know which is more "home," here or Alaska. "Here" is more familiar in a rootsy lifelong way. Alaska is/was an incredible opportunity.  When I figure it out, I'll post some pictures. The whole WiFi/data situation seems tertiary in urgency right now as cousins and other close relatives arrive constantly at erratic moments. Things will calm down a bit tomorrow.  We think. So, but nonetheless, here is an HAWMC post. 
Prompt:                                                
If your health condition (or the health condition of a loved one!) was an animal, what would it be? Is it a real animal or make believe? I thought of lemmings, cascade of falling off a cliff, but I don't think I am legion enough to be lemmings all by myself.                                                      
Before lemmings, I thought of birds. Migratory birds, to be precise. But the migratory bird that is anorexia/bipolar is an eccentric migrant. She will fly to the far north in the spring when she could be eating early cherries, and eke along in the north until right around when the berries ripen, and then fly for a sojourn to the desert. She has one wing much stronger than the other, which causes her to fly in circles some. But it's not always the same wing that's stronger. Sometimes she migrates many times in a year; other times she stays in one place, sunk down in the ground, for a whole year at a time. Sometimes she dresses up to join the crowd, leading with her strong wing. But the weak wing is always pulling her in to a center that may not be her own.  When she visits her home-place, where everything tastes better, she waits and waits, gets hungry, eats, feels sick, hates herself for feeling sick from the food of this special place, but still eyes the persimmons that are a miracle of April, the exquisite dried apricots from Uzbekistan, the green powder she brought with her as a taste of her own better self, is disturbed at the back of her nauseous mind by questioning thoughts about the next time to eat, wishes she had the strength of wings and character never to eat again, to become her own totem cicada, sing all day, and dissolve at sundown into a leaf-skeleton of abandoned beauty.

Letter to 48-Year-Old Self HAWMC 6

 Write a letter to an older you (tell us what age you’re writing to!). What do you want to ask yourself? What lesson do you want to make sure you remember?

Dear 48-year-old Ela,

Are you still on earth? Do you still worry about being concise enough? Whatever the answer to either of those, it's the year of the Snake again, you just turned 48, which is closer to the decade mark as well as the Chinese-astrological dodecade. Next time around you'll be 60 and they'll coincide! You're thinking back on the previous twelve-year cycles. Back to now, when you/I just turned 36. Back to 24, 12. The glimpsed memories from before one year old. You're seeing patterns both of uplift and of downcast over the time and are learning not to judge either one so harshly; even beginning to discern patterns. By now you've had enough experiences on earth but as a disembodied entity to understand that checking out would not be the end, either of life or of negative issues Perhaps by now you've made peace with being embodied, have learned to balance the eccentricity, which literally means movement out from center, by having some sort of stable home base, physical or not, from which to set out and to which to return. I guess that's the aim of all religions, even. Religions including the shamanistic attention to plant teachers; don't doubt your own abilities in that area. I hope you have an herb garden and lots of wild plants in proximity. And of course the rock-salt teacher, the lithium--remember you're a "rock jockey" and what a good ride it is, keeping you on earth. Remember now, when you were still relatively new to what an opening influence it is, how much more you see with it.

Please remember to pay attention to your own (incredibly trustworthy) intuitions and not to push yourself into doing something because someone else seems to will it. On the other hand, don't have such high standards of perfection and integrity that you don't let yourself finish projects because they're not exactly how you think they ought to be. Get a clearer vision of what you actually want to create before even starting, and there will be less room for either self sabotage or getting pushed around. I hope you've learned those things by now; those are the lessons I'm thinking need noting at this iteration of the twelve-year cycle.

Be your best self, my self. Ela

HAWMC Wordless Wednesday

Black and white with a splash of red barely noticeable. A bag with all you need just upstream of you. Light awaits your squeeze out of the hole. You took off your mitten and left it off and will freeze your hand. 
Must be skinny to be able to squeeze into and out of small spaces. Hides in small dark spaces. Give birth to yourself repeatedly through the dark tunnel back and forth. Black and white and red and always shades of other colors shed by the light.
Can't just leave a simple picture because words are where life resides.

HAWMC #2--Witch Diagnosis; Diagnoses Culturally Mediated

So. HAWMC Day Two. The beat goes on. However, I might be on my way to Israel and if so, I may not have sufficiently reliable internet access to keep the beat going every day I'm gone. And (should I be ashamed about this?) I haven't had/won't have time to prewrite all the posts I can't write on the day. I plead special circumstances.

Today’s Prompts: (I picked one)

• Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

I shared yesterday that I'm just coming into realization that using my writing for health activism is part of my life-responsibility. I also shared that the simple salt, Lithium Carbonate, has been a salvation for me. The fact that it's helped me so much suggests I have a condition for which it's a specific.

Sooo?

Five hundred years ago, I'd have been diagnosed as a witch, or else a saint. I'd have spun weird herbal spells, lived on weird broths of herbal twigs, flown on broomsticks, raved and then eaten worms and lurked in a cave far from humanity. Or I'd have borne self-inflicted stigmata, fallen down in faints and seen visions, receiving the voices of the divine, temptation of the devil, given food away away away to the poor but refused to eat anything besides Holy Communion. 

I'd have died young (as I expected to in this life), either burned for witchcraft or expired from malnourishment or disguised suicide through religious ecstasy.

Today, under the aegis of modern medicine, I'm diagnosed (with the full ceremonial title) Bipolar 1, Mixed Type, Psychotic Features, with the comorbidity Anorexia Nervosa. 

As a surgeon who stitched me up said, that's quite a moniker to have attached to someone.

Five things I want people to know (spread over two conditions):

(1) As shown above, diagnosis is predicated on the age in which we live. 

(2) However, today's medications can work. Example: today is the first time I've experienced a grandparent dying when I've been on lithium. (My grandmother was the last to go.) And my reaction has been very different this time. I feel how her death affects me and my mother. And my relationship with my mother. I feel how my other relatives are feeling, and her carer who lived with her the last few years. I'm happy she died suddenly and quickly, but I feel a huge sense of loss. With my other grandparents, I was glad for them and their peaceful departures, but even with my other grandmother, whose bed I was standing beside when she died, I didn't feel anything. 

I can't explain this in terms of maturity--when my other grandmother died, I was in my mid-twenties--nor in terms of closeness--my other grandmother lived next door to us for several years! In addition, the flavor of empathy I feel for myself and for my relatives is a certain connection I only became aware of after getting on lithium.

(3) Many anorectics don't care about their appearance at all but paradoxically desperately want/need to be thinner than everyone else, feel competitive with other anorectics. Even I, appearance-oblivious as I am, have sometimes had those feelings, and there are few things of which I'm more ashamed.

(4) I can't have kids. Sometimes I have a death wish that causes me to do dangerous things impulsively. I have almost died several times, and people whom I care about in many different places I've lived have been in stressful fear of my life many times. I haven't been able to finish or curate things I care about. I have a trail of personas, domiciles, vocations I've spun away from; the only thing persistent throughout has been way-with-words. On the other hand--I was in the top of my class at Oxford University, while playing classical music at a very high level.  I passed all my PhD exams first time at Berkeley, which hadn't been done in the department memory. Why I didn't complete (haven't yet completed) the doctorate is another question for another day. But I learn fast. Especially when words and language are involved, but versatility involves quick learning and just from looking at all the places I've lived you couldn't say I'm not versatile.
The good news: I have found ways to work meaningfully without having to be within the conventional framework, which I wouldn't be able to hold down.

(5) Despite (4), and especially with the help of meds and therapy, those of us with these conditions can learn to do better, be less crazy, less depressed, find a sustainable nutrition strategy. It's called condition management and it means things like making sure one gets regular and adequate sleep (like I haven't been doing), having good relationships, taking medications regularly, eating properly. It may include the odd hospitalization or ER visit, but please see that as part of the learning process. And I for one am not going to be offended if a friend of mine encourages me to manage my condition, whether by reminding me to get sleep or just by talking and listening. I find it harder to talk about food and eating, but I am trying to be more open to doing so.

HWAMC Day 1, Let's Go!

Happy April, and welcome to a month of posts prompted by Wego Health's HAWMC --Health Activist Writer's Month Challenge.
April is a challenging month, no doubt; it always seems slammed and flooded with work. And yet, for the second year in a row, here I am.
Today's kickoff prompts:

• Why you write – tell us a little bit about why you write about your health online and what got you started.
• Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

Yes, and there's the nub of it. "Why do I write about my health online" presumes I do write about it.
I have written about it with diffidence, saying I'm not sure I "should" write about it. I have not-written about it, declaring that I wished I were writing about it.
I have been urged not to write about it by friends fearing for my career prospects and the stigmas associated with my conditions.
I have been urged to write about it, to be a voice for others with the conditions, bringing my own special relationship with words to illuminate the experience and allow others to see what it is.
I have been urged to write about it for my own salvation, to save me from my prayer for oblivion.
I have been urged not to write about it because these conditions are part of the myth of the medical model and writing about them would be using my abilities to kow-tow to this model, like in Orwell's 1984, let alone taking the meds.
I have been urged not to write about it because writing about it confirms my identity under these labels when I should be moving away from all that and seeing myself a different way,

These last two urgings, ironically, may in fact be part of why I do write. Disbelief in the medical model and medications, and fear of identity-based-on-diagnosis informed my decisions for most of my life. At last, I'm here to testify that those things all have their place.
I feel a bit like an ex-vegan. I've come across a few of those on my travels, including an unbelievable number in Hawaii. All of them are eager to tell you chapter and verse on why it's so better not being vegan, even if you had never known them in their vegan days. Having abandoned a conviction they held so tenaciously, they are still justifying to themselves--and thus aloud in a high voice--the rightness of their apostacy.

I'm not an ex-vegan, and I didn't hold my disbelief in the medical model so passionately. I'm afraid I've never held passionately to any conviction, and I may be beginning to understand why. I don't speak much about my conversion, although I'm glad to tell all to anyone who wants to know. Readiness to tell anyone who wants to know, anyone afraid to accept care from this quarter, is one crucial reason I write, and should encourage me to write for a wider audience. Which may be precisely what I'm about to do with my MFA thesis. One thing I do mention here with some regularity, though, is the saving grace of a certain simple ionic salt compound. 

Rock (lithium), Earth (carbon), Air (-ate (=three oxygen molecules)). Not manufactured in a lab. 
I'll readily share how much it helps me because it truly opened my eyes. Opened my eyes to the concept that meds could help. Opened my eyes to a whole universe of human interaction I'd never been able to see before.
Final thought: the fact it helps so much suggests there is something to be helped. That can be so, whether or not one chooses to hang an identity on it.