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The Exact Dimensions of My Despair

It is the most absurd of luxuries to know exactly why I’ve been depressed lately. For those of you relatively unexposed to mental health issues, that probably sounds completely ridiculous. For those of you with mental health problems or dear ones who have them, that probably sounds familiar. Most depression bouts have triggers, but they’re rarely obvious. They’re things like an exciting upcoming event or a slight shift in sleep schedule or a missed medication two days ago or a weird food thing or you name it, it can mess with mental health. Trying to suss out what caused the mess is sometimes as stressful as the mess itself.

But that’s not what things look like right now. Right now, I know exactly what’s going on and that doesn’t make it a bit easier.

Content warning for the rest of this post: There will be a lot of medical talk and talk about hospital visits and body functions and blood and trauma and death and grief. It’s a raw deal I’ve had the past couple months and I am still raw, so I’m going to be very honest, very detailed, and very un-filtered here (language included). I understand this may not be for you, but I also won’t be talking very much about this again, so if you want to know what’s going on, this is the place. Please read thoroughly and carefully before commenting.

So. Here we go.

Let it be known, I really didn’t want to share this. This is private and awful and I have been avoiding this since it happened the first time. I have been going at this mostly alone (not completely, and thank you to those who have been there for me), but it is rotting me from the inside. I need to be able to talk about this as things occur and I feel and process. But know that it’s something I only want to talk about on my terms and I will let you know both here and in the future what those terms are. Please be prepared to respect that.

I miscarried recently. This is my second miscarriage. The first was very painful and relatively non-traumatic. This one was relatively non-painful and very traumatic. And in both cases, the bodily announcement of the pregnancy was also the bodily announcement of its ending. That is a serious brainwarp. You never knew what you had until the moment you lost it and it’s not like you were emotionally invested in this specific pregnancy but you still want to get pregnant and so you mourn the loss of the chance to be emotionally invested and WHY UNIVERSE WHY DOES IT HURT TO EVEN TRY TO PROCESS THIS?!

I miscarried in May. Well. In May. In June. In July. All the same miscarriage. I just could not stop bleeding. The entire fucking month of June was a nightmare of blood and tissue and cramps that would.not.end.

And then it did.

And then, on July 1, it started again, along with extremity swelling and high blood pressure and a reasonable panic from medical professionals that I might have post-partum eclampsia because miscarriage is a bitch like that and can still stick you with the potential for fatally high blood pressure and not even give you the benefit of a child.

Yeah. Fuck that shit.

So, to the hospital I had to trek (thankfully with a wonderful husband and mother by my side) and sat there for hours with only a bra and a gown and a literal fucking straw in my right arm just in case they needed more blood (they did – five vials at first, one later that night). Let me tell you, no matter how flexible that straw is, it is not flexible enough to make bending an elbow when providing a pee sample (or trying to read a book or transferring in and out of a wheelchair for your external and transvaginal ultrasounds) comfortable. It HURT.

And that’s when I found out I was still pregnant. Six fucking weeks and my body couldn’t get the message that this was over. I find it monstrously unfair that a decision that is already emotionally fraught is such a difficult physical and emotional process beyond the decision itself. No eclampsia, thankfully. But still pregnant. Oh, and I had a burst cyst to add into the party, because I needed that.

So I had two follow-up blood tests to determine when my body finally got the message. It took twice as long as I was told to expect for this pregnancy to give the fuck up (would that the fetus had been so tenacious in hanging on at the beginning). I also had to schedule a follow-up set of ultrasounds because the burst cyst might continue to be a problem and we need to make sure it isn’t. I am waiting for the trauma to end and trying to ignore it.

But I can’t. Because I’m TRYING TO GET PREGNANT. And my doctor told me that I needed to pin down my ovulation cycle and in order to do that I’ve been keeping a daily chart for three months trying to do just that and there, in the midst of vines and singing birds and twee flowers that seemed like fun at the beginning of this failed adventure, are the exact dimensions of my despair.

And to make it even better: the data is USELESS. A miscarriage and a burst cyst have thrown off my cycle so badly that I had to delay my fertility appointment for three months and I have to do it all over again. What new horrors await me in the midst of those vines and birds and twee flowers? I’m terrified. Those calendars feel like cages, and no amount of color or organization can make this seem like innocuous data.

I hope you can see why I didn’t want to share this already, but there’s more: I didn’t really want people to know that we were trying to get pregnant at ALL. Why? Partially because of a fear of this–I know miscarriage happens a lot. Partially because the weight of expectations is stressful enough when it’s just two people desperately hoping this will work.

Because I didn’t want the follow-up questions. The how’s it going? The so are you pregnant yet? The when are you having that baby?

Because I don’t want the hyper-feminization. Yes, I am hoping to be a carrying parent, but I do not aspire or plan to be a mother. I will co-parent with my husband and be a Mer (the title I will go by as a parent) and I will be exactly what my children need but I have Z.E.R.O intention of fulfilling what would normally be considered a “mother’s role” because while I honor those who take on the mantle of mother, as a non-binary person I will never be a mother myself and I am entirely okay with that (and so is my husband). Yet I know the world (and some well-meaning people in my immediate world) will be throwing every single bit of the hyper-feminization that comes with being a carrying parent because this is the glory of womanhood (except that non-binary and transmen absolutely have babies, too – frequently – so this experience, while mostly experienced by women, is not exclusive to womanhood). That, I look forward to the absolute least and it is the part of pregnancy I dread the most. I didn’t want to have to start fighting the battle any earlier than I had to.

Because I don’t want well-meaning invasive conversations about my body and what treatments am I pursing and what treatments other pursued. Believe me, I am well in contact with my doctors and we are doing everything we can and also we know what we can’t do. I need to be able to trust them. Part of that is not being inundated by suggestions from people who are not intimately aware of my medical condition.

Because I don’t want people asking, “Is it the lupus?” I don’t know. Maybe. I’ll probably never know and neither will my doctor and believe me I have wondered if this body made up of over-eager protective instincts has created a hostile environment for my heart’s longest and deepest desire and whythehellwouldyouaskmethatIdon’tneedhelpblamingmyself!

Because I don’t want people sharing their miscarriage stories. If you do, I will want to mourn with you, especially now as I know the pain more intimately than I had before, and I simply don’t have the emotional capacity to process anyone else’s pain right now. I don’t have the capacity to process mine alone! I have to go to therapy to process it and, while that is not at all bad, it IS indicative that I cannot. mourn. your. loss. right now because I cannot. mourn. mine.

Because I don’t want pinchy-eyed sympathy. I don’t want private messages of sympathy and concern. I don’t want any sympathy! I want silent solidarity because anything you say right now might set off a landmine and I don’t want that for me or you. You don’t deserve what might come out and I don’t need help tripping over the triggers in this rather full field.

Because I don’t want to hear platitudes and lessons on faith and eternal families. I don’t want to hear how I’ll learn from this. I don’t want to hear how I’ll get pregnant when I stop trying/start looking at adoption/least expect it. I don’t want to hear how I’ll get the chance to raise these lost babies in the next life. I’m so far away from there right now. I don’t want to hear how those spirits were too precious for Earth. I don’t want to hear everything happens for a reason one. more. fucking. time. I don’t want the all-will-be-well stories and the here-cuddle-my-baby-for-comfort offers. I don’t want to hear anything that might seem comforting in the eternal scheme of things because I am still screamingly raw (and also there’s not a whole lot of doctrine behind some of those statements and so I just want to yell and kick and a bash my head against the wall at the massively un-comforting false doctrines being paraded in front of me).

And before you think this is a list entirely made of my paranoid fantasies, I have experienced these to the letter. Already. I know how they were meant and I appreciate the intention, but this is my stand where I draw the line and say I CANNOT take any more. My heart simply will not allow another drop in this bucket.

Lastly, I have kept this silence because I worry about who I may hurt the longer I don’t share. I have close friends who I have entirely shut out of this process. This will be how they find out I am trying to get pregnant. These are friends who have been waiting to raise their children with mine. These are friends who have told me as another family member their own struggles and joys in this area. I am not ignorant of the hurt this may cause and that it couldn’t be avoided once I chose the path of silence. To you, my dear friends who I did hurt, I am sorry. I hope you can understand with the lupus and the gender expectations why even you, who try so hard to give me the space I need with the former and the respect I deserve with the latter, may have been too much at times. I was trying to protect myself and perhaps I chose the wrong way, but that choice was all about me and not about you. I trust you and love you. Sometimes, I fail to trust and love myself.

And so, we have come to the point that I share, despite all these reservations, because these are the *exact* dimensions of my despair and they are poisoning me.

So, with all the do not wants and the anger and the lack of desire, but desperate need to share, here are the terms I promised:

  • You can stay silent if you simply don’t know what to say or how to say it. I fault you not at all.
  • You can say, if you simply must say something (and I understand, oh, I understand that instinct), that you love me. That you wish you were here. That you hold me in your heart and in your thoughts and that I am not quite so alone as I might feel.
  • You can offer help, for such a time as I am ready to take it. Do not state what that help might be (that can too easily deviate into miscarriage stories or health advice), just tell me you have help to give when I am ready. I will come when my heart has strength. And I will hear your heart’s desire for my own to find peace.
  • You can pray for me. You can keep me in your thoughts. You can send positive vibes my way. Those are always most welcome and appreciated and it will not hurt one bit.
  • You can trust me to process this with my doctors and the professionals and my husband and family.
  • You can trust me to ask for what I need from you.

And so, my loves, my friends, my treasured persons, these are the exact dimensions of my despair.

But also, perhaps, here lie some of the dimensions of my hope.

Love,

Joie

The Days of My Identities

So yesterday, I learned too late, was World Bi-Polar Day.* Today is Trans Visibility Day. What a significant couple days for me. Obviously, these aren’t the sum and total of the identity that is me, but they are both large parts of me.
Being Bi-Polar has been one of the defining attributes of self for a large portion of my life. That’s why I choose to call it BEING Bi-Polar, not having it. I was diagnosed VERY early (aged 13) after three years of going to doctors for aggressive symptomatic behavior (as opposed to the preceding worrying behaviors which didn’t require medical intervention). I don’t really remember a life without this. And I don’t mind BEING Bi-Polar. I’ve learned to love the depth and breadth of feeling it allows me. Is it easy to manage? Not always. In fact, it’s often very difficult to manage. But I’ve gotten to the point in my treatment and my life that that difficulty is worth the result: a healthy, stable mind which is still allowed to feel atypically, sans medication.
I will NOT always be able to be off medication and I am NOT ashamed of that. It took AGES AND AGES of work to get to that point and it takes MOST of my mental capacity to maintain it. I almost went back on medication when I got married, because the shifts in my life and where I needed to be spending my mental energies nearly sucked away too much capacity. The timing is mostly non-coincidental, intimate relationships are HARD, yo (a good hard, though), but my Lupus diagnosis came just a couple months before the wedding entirely coincidentally, and that is a HUGE brain-capacity suck. Thankfully, I have a loving, giving husband who gives back as much as I have given (and sometimes much more) and who made up the difference in the lost mental oomph. His support is vital to my health and he is my staunch companion as I navigate a world that is a glut of emotional overload.
To my dear, dear friends who may be struggling with their mental health alone: GET. HELP. Do not do this on your own. Further, get PROFESSIONAL help. Your friends and family will be an invaluable support as you navigate the inner and outer minefields, but professionals WILL give you tools your friends and family cannot. You need a full tool box, whether those are therapy tools or medication tools. A good professional will hear your wariness to use one or the other and find a way to help you that fits your needs. And if you’ve quit on therapy and/or meds and have no idea how to go back – just go. Professionals are not there to judge you, they’re there to help you.
And to those brave souls who still struggle after getting help: Don’t stop. You’re doing so much good. You are excellent. And while this may not end, I firmly believe it WILL get better as your work continues.
To all of you: Stay at it. Stay with us. And be as visible as you like. You are under no obligation to expose yourself to society if you are uncomfortable doing so. You are also under no obligation to hide yourself, just because society wants you to. Screw expectation. Take care of yourself. You have a community who is here for you, if you need it.
And, of course, now to being trans.
It took me a LONG time to identify as trans. A LONG time. I was worried about appropriation, as I’m not binary trans and because I’m not at all interested in physical transition (for reasons I keep meaning to write down and never actually get around to doing so). Also, the denotative definition didn’t feel like it fit at all. But, despite those hesitations, I’ve clung to the Non-Binary banner from the moment I learned the term. It’s mine. That’s me. That is where I see myself. And, of course, now I fully identify as trans because I’ve come to understand some things about the term, about myself, and the connotative definition (as well as reminded myself of the power of connotative definitions, especially for marginalized communities).
It took me even longer to identify this way to other people. That’s not a surprise. It’s not a concept society is invested in educating people about–even with more binary trans visibility–and it. is. exhausting. to do the education myself. Some days, it is WAY easier to let people mis-gender me than it is to try to educate or fight pre-conceived notions of the “right” way to do/see gender (hint: history probably says you’re wrong if you think there’s *a right* way to do/see gender . . . science, too). But, I have been coming out, slowly but surely. I’ve chosen pronouns that make me happy, titles that don’t make me flinch (Mx. for an honorific, Zizi for an adult sibling of a parent, Mer for my parental title), and read a LOT in preparation for the days I have kids (S. Bear Bergman has been a lifeline). My husband has done a lot of the discussion with friends and family for me, so that I can come into a situation with the basics covered. I have an excellent partner in life. And, frankly, a pretty excellent life.
I am visible. I am here. And, while I may not always be up for the conversation, I am generally willing to have the conversation about both being Bi-Polar and being trans. While education can be exhausting, it’s important to me, for the survival of my own self and of the many transpersons who don’t have the levels of support and love I have.
To my precious friends and family in the trans community: You are just that: precious. You are here against so many odds, and though they may be stacked against you, you are a fighter. I am proud of you. And, if I may be forgiven for repeating myself, I beg you to stay at it. Stay with us. And be as visible as you like. You are under no obligation to expose yourself to society if you are uncomfortable doing so. You are also under no obligation to hide yourself, just because society wants you to. Screw expectation. Take care of yourself. You have a community who is here for you, if you need it.
Happy World Bi-Polar Day and Trans Visibility Day. Because, you know what? It is a gloriously happy thing to be me.
*The reasons for that is a posthumous “diagnosis” of Vincent Van Gogh (who was born on March 30th), which I think is some SERIOUS shenanigans (seriously, even with records from his doctor, this is nothing more than a GUESS), but objections to the choice of day and person to stand in for people with Bi-Polar as opposed to A DEFINITIVELY DIAGNOSED PERSON aside, I like the practice of having a day.

I can make beauty. (On destruction and creation and hope.)

As many of you know, I am an intensely crafty person. I love to make presents and watch something build into a beautiful result. I am handy with a needle (or four, depending on the project), a hammer, a hook, a chop saw, a paper cutter, a brush, a keyboard, and quite a few other instruments. I am not a one-craft type of gal. I’m detail-oriented and color savvy. I am eloquent. I can master new techniques with an ease that consistently surprises myself. I am good at crafting.

But I am also pretty good at destruction.

And do you know what? Destruction feels better.

That’s a secret about myself I don’t gladly share. I hate that destruction feels better to me. I hate that taking a pair of scissors to a pair of pants will give me more pleasure than when I pick up that needle to start a new project. This is something I’ve always struggled with and I don’t suppose that struggle will ever entirely go away. Not a day goes by without me looking at canvases I have prepped, primed, and painted and think how rewarding it would feel to take a blade and cut them apart. And these are some of my favorite works of my own making. Works I like less often do end up ripped or cut apart. The only reason all of my creations (and my hair) don’t end up like this is momentum; it is easier to walk past the art and let it stand than to seek out the destructive tools I would need to adequately and permanently destroy the art.

Recently, I’ve been on a making binge, mostly Christmas and birthday presents. And I’ve made some pretty stunning things, much to my delight. I can’t wait to share them with you (the posts will go on Scrappy Business, the once scrap-booking, now all crafts blog, when the recipients of said gifts have all seen their presents first). Let me tell you: creating is hard. It takes energy and motivation and patience. It’s always a surprise when I finish something because I didn’t destroy it and because I was able to patiently wait through the un-fun and difficult phases and allow myself to make something beautiful.

It’s always a new, intensely gratifying realization when I recognize that I can make beauty. And that it, too, feels good.

I have hope that making beauty will one day feel better than destruction. I have hope that one day it will be a joyful protective instinct that keeps me from destroying my own work, rather than mere momentum. I have hope that creation will come perhaps no easier, but definitely with less doubt and less instinct to quit. I have hope that I will always wonder that something beautiful can come out of any hands, but more confidence that it will come out of mine.

That hope always comes as I make more beauty.

Even though it feels so wonderful to destroy, I’m definitely happier and becoming a better artist and person when I create. So, I will continue to do so. I will continue to hope. I will continue to teach myself that I can make beauty and that I am far more worthy of the products of my creation than I am exemplary of the products of my destruction.

I can make beauty.

And I am beautiful.

My miracle came early.

😀

My Christmas miracle came early.  And that’s what I’m making room for: the possibility of miracles.

Sometimes, I’m so HUMAN in my expectations.  It has to be now and in front of my face and tangible.  If I can’t see it coming, the miracle can’t exist.  Being human is wonderful and beautiful and full of new and exciting possibilities . . . but it’s limited.  Our understanding is so imperfect, so ridiculously small.  Why, in my right mind, do I insist that the world conforms to my minuscule understanding of the universe it fits into?

I don’t know.

But I’m here to say, definitively, that the universe is BIG.  It’s huge and so far beyond my understanding.  I don’t care if, one day, every miracle is explicable, even re-creatable.  I don’t care if it’s wonderless and a series of equations that will always be too complicated for me to process.  I don’t care if the incomprehensible power of the human intellect is realized tomorrow and the coming end of the world has nothing to do with it’s destruction, but everything to do with a perfect discovery and lack of mystery in the world.

I. DON’T. CARE.

Because they will still be miracles.  And today is still full of them.  Because of that, I finally feel Christmas this season.  I’ve been struggling to capture the wonder and sacrifice and people and forgiveness and stories of the season.  I have been struggling to find Christ in my Christmas for whatever reason.  I don’t know why–though I have suspicions that my stress level has been part of it–I haven’t been able to feel the spirit of this holiday until now.

Then something happened.  Something I never expected.  A miracle came to my life five days before the holiday I JUST COULD NOT make myself understand this year.  It’s a miracle that it happened, it’s a miracle that it came, it’s a miracle that I saw it, it’s a miracle that I got what I needed to be able to feel the magic of the season.

Today, I must make room for the possibility of miracles because I would be intensely ungrateful to the Savior who provides them and the people who enact them on the inspiration of a loving God and His son.  These manifestations of perfect godly and beautifully human love are so real–more so because they are intangible and inexplicable.  I don’t why the timing was such that it happened today instead of the hours of opportunity that were had yesterday.  I don’t know why I had to wait a long month to feel the Christmas season in this way.  But the timing was perfect, as it always is in God’s hands, and the feeling is just as real, late as it is.

Christmas is here!  It made it to my heart and home before it was too late!  It touched one or two hurting hearts and made something joyful out of them.  It was beautiful and new as it is every year.  Christmas, that wonderful beautiful celebration of the babe in Bethlehem, is not just here and not just mine, but everywhere and everyone’s.

And that, in and of itself, is it’s own kind of miracle.

Tucked away on my bookshelf, with a binding so non-descript and innocent as to be completely invisible . . .

. . . Is my therapy album (scrapbooking).  It’s got quite a lot in it, and I love it very dearly.  One of the best assignments I did was the, “What are my relationship absolutes?”

This assignment was not my idea, just to let you know.  I am a woman of strong opinions, and therefore no stranger to absolutes, but I find that I do not like absolutes in relationships.  I don’t have a set of requirements that are non-negotiable.  I feel like that’s setting myself up for failure.

But, whatever.  It was homework and homework is to be done.  And so I did and found myself trucking to the psychologist’s office with a freaking multi-media presentation.  I don’t do ANYTHING halfway.  I had art, quotes, pieces of music, and scriptures that were abstract enough to avoid being absolutes, but at the same time I could easily see them as non-negotiables.

And here is one of my favorites.  The fact that this is a non-negotiable for me is telling, I know, and a bit raw.  But, honestly, I can’t help it.  There’s something about this gorgeous poem that speaks to the soul of me.

“Fire” by Dr. Karl Shuker

The bright flower of Evil, an Orchid of Flame
The hot, scorching wingtip of Death,
Which vanquishes forests, and homesteads, and woods
With gusts of its venomous breath.

A flicker of crimson that blossoms and grows
With petals that quiver and curl,
Which dazzles the eyes of the onlooking world
As its beauty it swiftly unfurls.

But touch not this shimmering creeper of Death
A garland of scarlet and flame,
A glittering steed with a bright fiery man,
And a temper that no-one can tame.

An omen of terror, a lustre of heat
Whose plumes dart up faster and higher,
A dread, burnished lover whose passion ne’er ends
For this is the fragrance of fire.

___________________________________________________________

Double post this week due to my TERRIBLE into of Tony!