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.




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.

Art and Bias

One of the major recent conflicts in artistic spaces has been this sense that liberals are taking over. It’s much of the motivation behind the attacks on Anita Sarkeesian, Brianna Wu, and Zoe Quinn. It’s also the main motivation behind the Sad Puppy slate that very nearly swept the Hugo nominations. I want to talk about the general idea BEHIND these conflicts (that of “the liberals are taking over and conservatives are getting unfairly ragged on”), as I feel like the specifics have been well covered by a lot of people much smarter and better informed than I am.

I’m a huge fan of entertainment media. Books. TV shows. Movies. Web series. Video games. I’m all for consumable art that both entertains and makes me think. It’s a thing that I like a lot. I spend most of my free time reading or watching TV shows while crafting. I find it mind- and world-expanding. I also accept that any art I consume is inherently biased. Entertainment does not exist in a vacuum and there is no way to strip the biases of the creators away from a piece of art, nor my biases from my experience while consuming. Bias is part and parcel of the entertainment package.

As a base line: I’m a liberal who was raised in a conservative household (and I actively maintain good relationships with my conservative family and friends). I am NB trans and pansexual. I am white and middle class and Christian, specifically Mormon. So, I have a few things going for me culturally and socially, and a few things not so much.

I grew up consuming mostly conservative art: movies that reflected strict gender roles, TV shows that idealistically claimed intelligence/hard work were all that mattered, books that portrayed heterosexual romances, media with almost no sex/swearing. The only exception was books I got from the library. My parents attempted to control that, too, but I was such a prolific reader that they couldn’t keep up and they were loathe to prevent me access to the library. I am lucky that, when faced with the choice of denying me access to books since they couldn’t supervise my reading or giving me some reign while trying to encourage me  to choose what they perceived to be “appropriate” reading material, my parents chose the latter. Some parents wouldn’t. They knew I read books they didn’t like and expressed disappointment when they felt it was appropriate, but mostly they let me read what I would read. Only occasionally, when they could directly connect mental distress/a bad behavior to a book, would they intervene. Sometimes that intervention was to take the book away, sometimes it was to put limits on when I could read the book (during the day, under supervision), and sometimes it was to read the book with me. It was always done with some discussion between us. This is, to this day, one of the best things my parents could have done for me. I was an active participant in my own entertainment choices, but I was also watched over and cared for. It was responsible parenting at its finest.

And, of course, this meant that I read a lot of books they didn’t like or that expressed ideas they found repugnant. Some of these ideas I ALSO found repugnant. Some of them, quite frankly, were saving graces amidst the wash of conservative entertainment that I found at home, at school, and – often – in the library. I was taught a different perspective that spent years maturing. That perspective eventually lead to semi-liberal political leanings and extremely liberal social leanings.

These days, several years into my (now not-so-semi) liberal politics and social leanings, I am seeing a lot of my conservative friends, families, and artists I respect say that there’s a liberal-positive/anti-conservative bias in [name art here]. For some, it’s TV shows and movies. For some, it’s the news. Others may see it in video games. Yet others, it’s infected their book world.

Art has always been a place of progression and experimentation and examining social issues. You can do that from a liberal lens and a conservative lens, but that is the whole point of the convention that is art. So, in the case of those who are complaining about ANY art being too much in that line, I fully and completely believe that they are mourning a social construct (“Art that is, simply, Art”) that never existed. Rather, I believe they are mourning a time period in their individual lives in which they were too inexperienced (due to youth, a sheltered life, a lack of education) to see what was already there. I have always loved art for these reasons of experimentation and social comment. It was there to be seen by child!me and has only become more apparent as teen!me and college!me and adult!me have gained more experiences and education.

Often, things under the microscope in that realm of experimentation and examination are long-established structures: governments, religion, the class system, the social heirarchies of race and gender, sexual dynamics, colonialism. Many of these things are examined for flaws. Often, the determination is that power systems that have long gone unexamined have a MYRIAD of flaws that need to be addressed, perhaps even dismantled. Often, the result of trying to dismantle the errors of long-held traditions is painful.

So this brings me to the perceived liberal-positive/anti-conservative bias: Yeah. It’s there. I think it’s great that people are examining things that seemed to be given not too long ago and are asking, “Must it needs be this way?” and, when they realized it mustn’t, dismantle and discard. A LOT of things that have been long-held and unexamined are actually REALLY screwed up or have distinct areas of screwed-uppage. I also think it’s great that there are areas people find worth conserving. An example: Personally, I think religion is one thing that SHOULD fall under both categories (in the sense of “faith, if you have it, is an excellent thing to keep, however the power structures built into organized religion need to be examined”), but is often tossed out in the “dismantle and discard” pile. I don’t like that. I don’t like that there will be many people who will look at my religious bent and/or my particular religion and discount my words. (“Political” could be inserted for “religious” in that sentence as well.) However, all I can do about that is to make sure that that is not what am doing. I try to give a multitude of opinions a change to impress me and react accordingly.

However, this leads to why I claim a liberal-positive bias: experience shows I can trust liberal creators more. I rarely know the politics/social inclinations of an artist before I consume the art. But, in my experience, I have rarely been surprised at the political/social inclinations of an artist when I discover them AFTER the fact. And, I am generally more pleased by the work of those creators with a liberal leaning to their social and political views. Why? Because there is room for me there. You see, as a non-binary, pansexual individual who is culturally perceived as female, I rarely find characters like me or stories like mine in art. I rarely find art that reflects the racially diverse world I live in. I rarely find dynamic, fully characterized women like the women I know. When I do find it, it is most often (though not always) in the art created by liberal people. I know, for a fact, that I am not alone in this experience. This is where the wider bias comes in: many people have felt unwelcome or marginalized, many creators have seen the loneliness and gate-keeping in their friends and fans, many have made art that is more expansive and inclusive in response (whether due to experience or witnessing the experiences of others). For all those who have spent so much time looking desperately for those inclusive spaces, this is something worth buzzing about. Loudly. In many ways, that loud buzzing has built into a prevailing wind. I can’t claim to be disappointed for myself, though I understand why the members of previous prevailing winds would be.

Be that as it may, when it comes to my continued consumption of entertainment, my philosophy is simple. I have no desire to limit my imagination to a world that is less than my own: less diverse, less complex, less welcoming. I get enough unwelcoming, simplistic interactions every day. Everyone I meet assumes I am female – including people with a liberal bias. In the main, it’s people with liberal leanings that try to correct the assumption in their own head. Everyone assumes I’m straight. In the main, it’s people with liberal leanings who apologize and move on when I tell them otherwise. A great deal of people assume that I am less capable/less interested in X because I present as female. Generally, it is people with liberal social bent that encourage me to break through those assumptions, rather than remind me of the difficulties that come from challenging those assumptions. There are people with conservative bias who have made great efforts to call me by my preferred pronouns, who have responded with kindness and compassion to my sexuality, and who have not taken the time to inform me how hard my life will be if I choose to run up against the barriers of assumption every day, but rather offered a shoulder to cry on when those barriers bruise me. But, again, in my experience, it has been the socially and politically liberal individuals who have done these things quicker, with less hesitation, and with fewer missteps. This is how my bias developed. It is also how it will continue to be guided. There may well be a day when the pendulum shifts.

For now, I tend to trust liberal creators more. I tend to put them on a higher priority on my list of art to consume. I tend to forgive their missteps more readily if they have a body of work that proves to me they continue to try to improve in the areas I feel they’ve failed. I tend to listen to their opinions on recommended works, until they consistently recommend outside my preferences. I tend give more weight to their opinions because they consistently give me reason to. Until they don’t – and then the trust and respect for their opinion is retracted. I give this same trust and respect to conservative creators who have been as consistent. Some have been around me since I was a child. Some are recent discoveries. But there are less of them.

And until there is room for me in their stories, in their created worlds, there always will be.*


*To be clear: this is not me asking or demanding that any creator make room for me in their work. It’s saying that their work will be less appealing to me until that day comes that I am welcome there. And you can’t just say I’m welcome. You have to act like it. Forgive me if I don’t accept an invitation to watch a show or read a book or see a movie that I KNOW has sexism and racism in it. Your words may say, “Come in!” but your actions say – very clearly – “There is no room for you here.”

You know which movie I’m talking about.

I’m seeing a lot of think-pieces about a certain movie coming out this weekend* and I’ve yet to see one that hits the mark for me because they’re almost all in the business of judgement and ridicule, often of the particular kink (badly and incorrectly) portrayed in the books and film.

So here’s my take on the upcoming movie:

I can’t get torn up about a film that portrays a totally valid means of sexual expression in a wildly inaccurate way. I can get torn up about the abuse the main male character practices, using that kink as a blind.

I can’t get torn up about another R-rated movie earning its R rating. I can get torn up about how frightening the dynamic is in those scenes that earned the movie its rating.

I can’t bring myself to protest the movie – it’s no worse than a lot of other entertainment. I can bring myself to some other movie and not throw my money (or clicks/searches) in that direction.

I also can’t bring myself to judge those people who enjoy the movie or books. I enjoy a LOT of bad movies and literature, some because I didn’t know better when I consumed it and am now afflicted with a vicious sense of nostalgia (see: Piers Anthony), some because I just love corny, campy, so-bad-it’s-good entertainment. I can refuse to judge other people for loving problematic entertainment. You CAN.NOT. tell me that you don’t love some problematic entertainment. Everyone does. I don’t care if it’s old films filled with insidious racism or those terrible video games with sexualized violence or this movie. I may think those are poor choices and I won’t participate in them or facilitate your participation, but I will not judge you for participating. I will only encourage you to think about the decision critically.

My critical evaluation has led me to choose not to see the movie or read any more of the books than I already have. It’s also made me really sad that this is the current pop-culture portrayal of BDSM because it’s only further stigmatized something that I think is unfairly and wrongly demonized (also a thing I won’t judge: what goes on in your bedroom – NONE OF MY BUSINESS). I’m also REALLY ready to see the discussion move on to the next big/bad entertainment thing. Getting tired of this one.

*One of the things that has annoyed me most about all the think-pieces I’ve seen is how they are actively advertising a movie they say they want to be protested/ignored into oblivion. I’ll give my internet column inches to it because the judgement is what annoys me most, but I refuse to advertise for the movie. Y’all know which movie I’m talking about. You’re smart. And I never have to mention it or tag it.

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.

Quick lupus update!

Because I am knee deep in wedding planning (eight days, 20 hours – give or take a few minutes)*, this is not going to be nearly as long as the last one. Also, there’s not as much information to impart, so there’s that, too.

I went to see my rheumatologist today – yippee –  and the consensus is that everything looks good. Of course, looks good and *is* good are two entirely different things, so seven vials of blood and one cup of pee later, I was allowed to go home. (Sorry, by the by, for the TMI, but urine tests are a big part of health checks and not just for pregnant ladies. This is Just One of Those Things.) Max, it’ll take two to three weeks to get the results back. In the mean time, keep taking those pills and keep tracking progress.

I have not had any flares since I went on the medication. This is excellent. My ankle did decide it hated me yesterday and, if I think back on it, this is pretty typical the days after I wear my skyscraper heels. It looks like my ankles may not be able to handle skyscrapers sometime in the future and CERTAINLY I’ll have to approach them with greater moderation than I used to, but I think I can handle that. And, hopefully, skyscraper heels will be something I can still indulge in with that moderation.

I have not gotten all the energy back that I wished I would, but I’m still hopeful. After a body suffers from pain and exhaustion for a long time, it takes a bit to readjust. So, now that the medication is in full swing, I can concentrate on giving my body the rest in needs so it can restore itself after a long period of exhaustion and a smaller, but still plenty long, period of pain.

My hair is doing better. No more chunks coming out, but still a LOT of strands. I’m brushing my hair a lot more regularly than I was, but brushing still freaks me out a little, so most days it’s a ponytail or a bun to cut down on the need for brushing too much. However, it is getting BEAUTIFULLY long. 😀 I’m so thrilled at how gorgeous it’s looking and I’m really hoping to keep it going long for another year or so. It’s one of the few things I’m able to keep really healthy (seriously, hair stylists compliment me on how healthy it is a LOT), so I think I’ll be keeping the long hair around for a while, just because it’s one of the few things I have a little control over and that is consistently in healthy shape.

I am having to be VERY careful about the times I do or don’t extend myself. Now that I’m more aware of the repercussions, I’m noticing repercussions I hadn’t connected before So, time and energy management is HUGE and it’s lead to some really frustrating disappointments, but I think it’s also lead to a better quality of health (which is, of course, more difficult to gauge than disappointment). I need to do better, but I really only have three months of conscious practice in health, so I’m giving myself some time to adjust to the learning curve without being super hard on myself about it all.

Clearly, it’s not perfect, but it seems to be going in the right direction. And that is a really good thing going into wedding week. One less thing to worry about as much. I’ll keep you in the loop as things occur!

*Part of me would LOVE to make a ‘progress’ post on wedding stuffs (because there is SO. MUCH. STUFF), but I want this wedding to be as much of a surprise as possible. So, I promise, I’ll show you tons of pictures POST wedding of all the leetle details.

For the record: I’m making myself do this. (Also known as: The Dreaded Health Update.)

So, last I wrote about my health was about a month ago. And I was going to go see a doctor in just under three weeks to get the results from a crap ton of labs and x-rays (which will reflect very painfully on the wallet). I was expecting to get bad news and I reallygenuinely thought I was ready to hear anything the doctor could say to me. I thought I was doing okay. Bad stuff was coming, I could handle it.

Wrong-o bong-o, Josephine.

When, on August 13th (gosh, that does not seem like only two weeks ago), I went to the doctor, I got the news I was least expecting: I have lupus.

I’m pretty sure my ears are still ringing after hearing my world crash in on itself like that.

I can’t fault the doctor. He said in the original appointment that he thought it was lupus. I just didn’t believe it was. I thought it was RA or that connective tissue disease he mentioned. I really didn’t think it was lupus. Even so, I thought I had prepared myself to hear whatever he had to say – most or least expected – and clearly I hadn’t. I was numb. In shock. I called parents and The Surprise to let them know what the diagnosis was, but I was on auto-pilot.

I drove myself back to work and the closer I got, the more I felt like I was about to panic. I had just heard life-altering news and I was scared. I’m proud of myself – I was the first to make the House joke – but I also know I had limits and I ran head-long into those limits that day. People, I wept. Openly. I don’t weep. I trickle. Occasionally, I dribble. But I do. not. weep. Yet, that day I could not hold back the tears, no matter how hard I tried. I was done.

I took a couple days off work to get my head back in the game. Frankly, I wanted to take longer. Maybe I should have, who knows? All I know is, I’m doing my best to move forward. And, in this context, moving forward has meant not thinking about itIf I think about it, it’s too much.

So, now that I’ve had two weeks to process, I’m making myself do this because I need to practice thinking about it. I knew a young lady who suffered significant injuries to her left foot in a severely traumatic car crash. She had skin grafts and all sorts of primitive-seeming surgeries on her foot as a result. One day, her doctor and the nurses came in to change the wrapping and she, as she had always done, looked away. The doctor said, “No. Look at it. That’s your foot and the faster you acknowledge that, the better.”

Wulp, this is my foot. And it’s time to acknowledge it. I have lupus. And I am TERRIFIED.

I’ll get to why I’m scared in a bit. First, I want to talk about what YOU can do. I know that’s one of the first questions many of you have asked, and its one of the easiest to answer: not much. Lupus makes everyone feel helpless – patients and family/friends of patients alike. This is because it’s just not an obvious disease. One of the first things we (my mom, dad, and I) read about lupus was that it was a disease that was hard on the friends and family because they wouldn’t be able to see it. Lupus tends to manifest in quiet, small, very inward ways, rather than in a recognizable, outward set of symptoms. People with lupus don’t *look* sick. I have already experienced this in the two weeks since my diagnosis. This is one of the most important things for you, my friends, to know: I will not always *look* sick, but believe me when I say I am.

Another thing you can do – for both me and yourself – is get familiar with the Spoon Theory. I used this before I got my diagnosis, both as a language to describe my mental state or physical exhaustion (which we now know is a side effect of the lupus) and as a common language my sister and I could use in regards to health. We both have chronic illnesses. With those illnesses come limits that we need to be mindful of and honor or we won’t make it through the next day. This is the BEST, most accurate way we’ve found to communicate when we’ve reached/need to avoid reaching those limits. If I (or my sister) tell you that I have no spoons left to do something I’ve expressed interest in doing, listen. It’s not that I don’t want to do it or that I’m merely tired. It’s that I have completely run out of any and all physical/mental/emotional stamina that I might have and I need to take the time to restore it. Running myself into the ground isn’t just counter-productive; it is actively dangerous.

Frankly, I recommend everyone at least become familiar with the Spoon Theory because everyone has limits. And maybe not everyone has the same limits, but this way you can communicate, concisely and clearly, when you have reached yours. Still, if the Spoon Theory doesn’t work for you, that’s fine. But understand that that is what I will be using to communicate my health status.

The last thing you can do for me is NOT ask how I’m doing. There is no question more annoying than that. Why? Because it makes me think about how CRAPPY I feel and makes me talk about it with someone else, which can be pretty tiring. That question brings my carefully directed concentration in a direction that just leads to dwelling on pain and exhaustion and not on productive things. If you want to know how I’m doing, ask about my day or my wedding plans or my work – about actual things in my life. Let me bring up my health. Once I’ve brought it onto the playing field, it’s fair game – until I say I can’t talk about it anymore. Only I know if I have the spoons to talk about my health with someone else, so while I appreciate all the love and care that is in your inquiry after my health, please don’t force me to talk about it if I’m not ready.

And now onto treatment: I’m on a medication that I take twice a day. I will likely be on medication for the rest of my life. I know it shouldn’t, but after working so hard to get off the drugs for my Bi-Polar, this feels like a set back. I’m not anti-medication, I take what I need when I need it. I just don’t like needing medication all the time. This particular medication is used – in much larger doses – to treat malaria. How they discovered that small doses treat lupus is BEYOND me, but I can be grateful for that particular medical mystery.

I do not know if it’s working. I won’t know for at least another two weeks. This particular medicine does not reach noticeable amounts of effectiveness until one month taking it and it takes another two months to reach peak effectiveness. That means I won’t know if its the right medicine for me until right around when I get married (in fact, three months exactly on the day I get married). Ugh. A week and a half before the wedding, I’ll go see my doctor and talk with him. If it seems to be working, great. If not, I’ll probably end up switching medicines right before I get married. Please, please, please pray that this medicine is effective. Switching medicines (or, more accurately, side-effects of medicines) is a really frightening process.

The good news is, I do know I’m not allergic to the medication. One of the exceptionally awful things about lupus is a propensity to react to things (meds, the sun, a random encounter with a scent or lotion) with rashes. Lots and lots of rashes. So, for the first few days, we kept an eye out for rashes. There haven’t been any. I’m in the clear. It also is fairly non-toxic, so if pregnancy is something I feel up to doing physically, if my mental health is in a good place, and if this medication is effective for me, I still have the option to bear children. That’s a lot of ifs, but it’s also better than nothing. That being said, the medication can cause brown spots to form on the back of the eye, so I have to be diligent about my yearly check up with the optometrist. The chances are about 1 in 10,000, so not so bad, but just one more thing I get to worry about. (Are you starting to see why “How are you doing?” is actually a really complicated, scary, difficult question? I hope so.)

And now, on to the lupus itself. (Yup, this is my life. All that is just window dressing before the real show.) Apparently, one of the biggest concerns is kidney function. Lupus can attack kidneys with the best of them. Right now, my kidneys are doing GREAT. This is excellent news. I did ‘soft pass’ on the RA test again, so it looks like my lupus will continue affecting my joints the most. However this does not mean I won’t have other symptoms (read on, MacDuff, for the others). I haven’t had any joint flares for a few weeks, so hopefully that pattern will continue until the meds kick in so I can avoid flares in general. They’re not pleasant. 

I’ve currently got a couple random rashes (that I thought were Just Part of Life and How Skin Behaved) that should recede once the meds kick in. Lupus is characterized by a butterfly-shaped rash on the face and, as many of you know, my cheeks have always been in high color. Upon inspection, the line of that rash does, indeed, imitate the wings of a butterfly. Hey, look at that!

That’s actually been one of the really positive parts of the diagnosis: a lot of things that I thought were Just Part of Life have been given a context I did not know I was missing. I’ve struggled with intense fatigue since I graduated from college, right around the time I was first diagnosed as pre-arthritic. Now I know why. That’s what I’m most looking forward to as the meds kick in: getting energy back. Now, it might be a while and I will likely have some lifestyle changes I need to do, but just knowing I have lupus has given me information I NEED to be able to combat this persistent fatigue. I had almost gotten used to life like this. It’s good to know I don’t HAVE to be used to it. Also, I got pretty freaked out a few years ago when my hair started falling out like gang busters. My dermatologist ran some tests, but apparently not tests for lupus. (No surprise. Who jumps straight to lupus?) Because my hormones and thyroid were fine, he told me it was probably just a normal hair loss due to a significant loss in my body weight. But, when my weight loss leveled out and my body normalized, my hair loss did not. It continued to come out in large amounts. I would run my fingers through my hair and have chunks come out from that simple motion. It was something that scared me quite a bit, but that I was told was normal, so I had to squash the fear into the back part of my brain where it could live but wouldn’t intrude on my daily life in any significant way.

To those of you who read that and said, “Wow, that sounds unhealthy.” You’re right. It is. It was also the only way I could keep moving forward because my doctor said that this was normal. It was Just Part of Life. For those of you who read that and said, “Wow, that sounds like a coping mechanism trauma survivors use.” You’re right. It is. It was something I learned when I was dealing with some of the issues that contributed to my Bi-Polar. It’s not the best way to deal with scary things, but often it is the one I default to because it is a habit. Having the lupus diagnosis is helping to break the repression cycle, as I’m no longer being told I’m imagining things, but it will be a process.

Now, on to why this is still Oh So Scary for me. I recognize the positives in having a diagnosis that gives me so much more information, that helps me realize I’m NOT imagining things about my health, that puts my aggressively poor immune system into a greater context, and that has lead to treatment of these issues. These are very good things. My mind is at a much greater rest than it ever was. HOWEVER, the diagnosis also brings with it a whole host of challenges. I mentioned the side-effects of the medicine and the worries about kidney function. Those are fairly easy to deal with: take blood regularly, make sure I see the right doctors every year, etc. What isn’t easy to deal with is the vast and varied unknowns.

Do you know why House always said, “It’s never lupus!”? Because it almost never is, but also because there are so many ways that lupus presents that it ALWAYS has to be ruled out. I know how my lupus is presenting now: intense fatigue, joint aches, hair loss. I don’t know how my lupus will present tomorrow. No clue. And because the presentation of lupus is so unique and individual to each patient, I have no idea how it could present. I will be on a constant alert for the rest of my life, watching for new symptoms. That’s exhausting to think about right now. Eventually, I’ll get used to it. It will be Just Part of Life. But right now? That’s scary.

The hair falling out is still pretty scary. I’ve never been particularly vain about my hair. I’ve dyed it and chopped it, not caring if the result was so bad I had to shave it all off. I love having my hair, but I could also easily see a world without it, so long as it was my choice. Possibly not having that choice makes me feel very out of control. Also, seeing my hair fall out like that when I brush it (and even when I’m not brushing it) is a constant, ever-present reminder that I Am Sick. Broken. Unwell. That’s not easy. It’s gotten to the point that I don’t brush my hair every day anymore. I’ll consider myself in a good place when I can do that again.

I’m terrified of losing the use of my hands. And no, I don’t mean that they’ll be paralyzed. But right now, I have a lot of functional mobility in my hands that I use ALL THE TIME. My form of release and relaxation is crafting. Many of you have received handmade cards and gifts from me. Paper crafts, cloth craft, yarn craft, paintings, drawings, writing – these are all things I do to take care of myself AND to show you I love you. The thought of losing the ability to take care of myself and show love to others like this is intensely frightening. Every time I pick up a project, I wonder if this is the last one I’ll be able to do. It’s made crafting less restorative than it used to be and I resent the hell out of that. BUT, I don’t think this is permanent. Once having lupus becomes a background part of my mental landscape, I think I’ll be able to find that peace and rest in creation again, rather than a dread at the day it might end.

Remember in old animated films how you ALWAYS KNEW which book was going to be taken off the shelf or which supposedly-lifeless object was going to become animate because the painted background and animated foreground styles were so disparate? That’s a lot what my mental landscape feels like right now. LUPUS sticks out like a sore thumb. Eventually, it will transition into the painted background, just as my Bi-Polar has. But, for now, it’s right up front and scares the ever-living shit out of me. If you do accidentally ask me, “How are you doing?” please understand when I don’t reply. Or even reply, “How do you think I’m doing?”

I’m not doing so great, but I’m not drowning yet. It’s going to take time to get to the point that I’m doing any different than that. It’s going to take even more time to get to a mere “okay.” And all of us, you and especially me, are going to have to be okay with that.

For now.