Finding the Words

It’s been five weeks since … I still don’t have a label for it. It just is.

Well I guess I could say “my old wounds got torn open, setting me back a year or two in my recovery to how I felt and functioned about 18-24+ months ago.” (‘Recovery’ – to the degree to which I find that term relevant – isn’t a unidirectional, continuously-getting-better process. It’s complicated and messy and all over the place. So this can’t be a setback, just an unexpected and more-difficult-than-anticipated part of the journey. Perhaps a necessary part? It’s certainly reminded me of how vulnerable I am – but also how resilient I am.)

I’m inclined to say “that’s a bit melodramatic” but, well, it’s my truth. Coming back from that hasn’t been easy. For a while I took a break from activism, particularly the being-a-leader-in-a-grassroots-organization stuff. I’ve been getting back into it, almost to the point where I feel like I’m “pulling my weight” again – putting in effective work commensurate with the roles I have. But I’m also addicted to Terraria, my apartment is as messy as ever (what an understatement!), and my relationship with Fox … let’s just say both my therapists seem to agree it should be my primary focus. And one basically suggested he should quit his job so he’ll have energy to put into our relationship.

It’s been about 3.5 weeks since I visited Ron in the hospital and 2.5 weeks since ze was released. Ze lost zir job and couldn’t go back to zir parents’ house because their terms were unreasonable to the point of being unhealthy, so ze is currently homeless. People are doing what they can to help and ze says ze feels better. Ze seems better too – most of the time. Sometimes zir “speech seems pressured” but it’s usually connected to particular topics, and it’s possible to move the conversation elsewhere. Ze listens to me.

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I forgot to refill my prescriptions until I ran out – of course on the day I was running late and had to rush out the door. I tried to put in the refill request for the clonazepam first, but was unsuccessful; somehow my prescriptions got de-synchronized so I was out of refills with that Rx number and I didn’t have the new one to put in. I was in crazy anxiety rush mode, so I didn’t try refilling the lamotrigine – even though it had 2 more refills with that Rx number.

I asked Fox to go to the pharmacy for me and he did, because he’s wonderful. He said (they said) they didn’t have anything in the system for me. I was tabling at a pride event and he had to leave for work and it was Sunday, so there wasn’t really any opportunity to follow through on anything.

On Monday I realized I should’ve tried to refill the lamotrigine, better to have one of my meds than neither, right? That was no problem, but I had to speak to a pharmacy representative to deal with the clonazepam. The person I talked to at the pharmacy had an irritating tone to her voice and was too nonchalant, like there was no problem with them not having the information necessary to make sure I have access to a medication that keeps me alive. She didn’t even try to be polite like saying ‘sorry’ – but she did offer to fax my prescriber. And she explained that the clonazepam prescription had expired because it’s a controlled substance, so it has to be filled within 30 days.

I walked to the pharmacy with my inner voices screaming, an irritable mess, barely holding myself together. By the time I got the lamotrigine my ears were ringing and my eyes were so full of static everything was in a darkened haze and I couldn’t think straight and everything felt completely WRONG. That was after missing one dose – and it’s not even that high a dose. I took the dose – better to at least take one of my meds, right? and everything cleared within minutes. The difference was noticeable to Ron over the phone.

I had to play phone tag with my prescriber for a couple days, but I was able to refill the clonazepam today. I didn’t notice as much as an effect when I took it, except that maybe I’m a bit calmer? And I was rather sleepy, I attributed it to waking early from a bad dream, but the medication is known to make people drowsy. Ron seemed surprised I’m able to function at all taking [my dose] of it every day.

To be honest, between what ze’s been telling me about it and what I’ve read online, I’m a bit wary about staying on the clonazepam. Apparently it’s habit forming and it’s better not to take it for extended periods of time. But my prescriber added it for a reason – I think because even with my mood stabilized I was still struggling with anxiety. And I don’t know if I wrote about this yet, but my prescriber is retiring, so I need to find a new one within the next month or two. I’d rather not change my meds until I’ve developed a good rapport with the new prescriber.

So, yay, I’m back on my meds! I anticipate that going a day without lamotrigine and two days without clonazepam will have thrown my levels off; it might take a while for them to get back to normal. And I’m a bit shaken by how profound my (withdrawal?) symptoms were before I took the lamotrigine. I’d come to accept that I’ll probably be taking these medications for the rest of my life, and I’d rather do so consistently than risk going back to how things were before I started taking them. Still, this was a rough reminder of how dependent I am.

TW: verbal, emotional, & sexual abuse; transphobia; description of manic symptoms

I should not have allowed Ron to drive home at 2am two weeks ago. I should have talked zir into going to the hospital.

I just … I’ve read about how traumatic mental health hospitalization can be. I volunteered on a locked adult psych ward – and I was terrified they’d figure out I should be there as a patient and prevent me from leaving. Ron talked about how horrible being hospitalized was, I’m not sure if that was before or since the last time I wrote about zir. On a personal level I’m generally inclined against seeking medical help – especially going to the hospital – unless absolutely necessary, like life or death … But I shouldn’t have fallen back on that. I risked Ron’s life, allowed zir to go untreated for another week – during which zir symptoms got worse and zir behavior became a risk to zirself and others – and allowed it to get to the point where ze was involuntarily committed (by someone else).

Worse, I subjected myself to nearly 48 hours of being ranted at, manipulated, and abused. I feel like it’s set me back at least a year, maybe two, in terms of my own mental health. I’ve spent the past week on an emotional roller coaster, replaying the most painful moments over again in my mind, and debating whether I have any right to describe someone else’s symptoms on my blog. Well, those symptoms interacted with my mental health issues to make it so there are times when I feel dead inside. I’m having self-harm thoughts and urges again. That’s mine to write about!

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Compassion / Pay It Forward

TW: mention of suicidal ideation

Ron had two really bad days in a row, and didn’t sleep in between. Ze told me ze was suicidal. On the first day I took time from my visit with Banji to have an extended phone conversation with Ron, anything to keep zir connected. On the second day I drove for five hours, successfully chaired a 90-minute meeting, reconnected with Fox after 5 days apart, then welcomed Ron into our home at 10:30pm. We decided to hang out in the back yard.

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Hypomanic and Depressed at the Same Time

I read an article today and now my world makes so much more sense. In a Depression Bipolar Support Alliance (DBSA) “Ask the Doc” article, Dr. Mark Bauer, MD states that:

“[T]he most common mood state in bipolar disorder is a mixture of hypomanic/manic and depressed symptoms. In fact, the classic picture of bipolar disorder having a course alternating between the poles of high and low moods is an over-simplification.”

He goes on to explain mania and hypomania more clearly, basically describing them as hyperactivation – feeling “sped up” and driven. This can feel good (e.g. grandiosity), bad (e.g. irritability), and everywhere in between. In other words, mood and activation level are two different things.

Ergo, we can think of bipolar disorder as

“a condition of recurring depressive periods punctuated by periods of hyperactivation – and sometimes these periods of hyperactivation alternate with slowed down, depressed periods, but at other times they overlap.”

That. Is. My. Life. It’s very rare for me to experience a period of time with no depressive symptoms; at best my symptoms become few and mild enough that I don’t meet the criteria for clinical depression for a couple days to a few weeks. But periods of hyperactivation… just look through my blog and you’ll see my posts about “I’m going to do this new thing that will change the world,” staying up all night composing, “now I’m getting better and I’m mad at Fox all the time,” and most recently “Let’s Play Skyrim!”

I usually feel better during my periods of hyperactivation because 1) I have energy to do things and 2) I’m hyper-focused on something that’s meaningful to me, at least while the hyperactivation lasts. Sometimes I don’t feel so good because I want to Do All The Things!!! but I can’t focus on one thing to do, so my mind is a jumbled mess. I’ve also tried to be a part of too many different groups at once, which invariably results in me feeling overwhelmed, backing out, feeling guilty, and my depression symptoms becoming more severe. As far as I can tell, all of my periods of hyperactivation have occurred at times when I also met the criteria for mild depression. (Possibly also moderate depression.) In other words, I’ve never had a discrete hypomanic or manic episode.

I try not to put too much importance on labels; what’s really important is that the needs of the person with a mental health issue are being met. But having a label creates a container for my experience; I can understand it and talk to other people about it and know I’m not the only one who’s had that experience. Finding labels that accurately describe my experiences helps me feel safe. I obviously can’t diagnose myself, but the label “bipolar disorder” seems to become more accurate the more I learn about the experiences it’s intended to describe.

I know I’ve been “depressed” lately because I’ve been feeling sad and/or grumpy, isolating, having trouble eating full meals, apologizing for my existence, and thinking “I want to die” when I’m tired. I feel like it’s only a matter of time before my world starts unraveling (again): I worry about Fox’s safety, our rats’ health, my own health, the house burning down, etc. Calling these experiences “depression” helps me separate a bit from them, accept them, and engage in self-care.

On Being Wrong

I’ve been feeling more depressed than usual since my tooth was extracted on Monday. I’m more socially withdrawn, sad a lot of the time, with low energy and motivation, and more muscle aches that aren’t immediately attributable to the physical effects of the extraction. The constant dull pain is grating on me, making me irritable and impatient. I had to drag myself to class on Wednesday, had trouble concentrating, and role-played the “very loud client who remains disengaged from the group” fairly well. I’ve spent a lot of time improvising on piano in preparation for my midterm; everything I play sounds sad, melancholy, dark, surreal, and/or angry – even scales! It makes coming up with an intervention other than “Let’s sing about the crappy situation you just described” very difficult.

(In my defense, singing about crappy situations can be extremely therapeutic. Not only does it allow expression of repressed or taboo emotions, it helps one look at the situation and oneself differently, assert oneself, and heal. It is safest to do with the assistance of a certified music therapist.)

The primary reason why my symptoms have worsened can be found in this line from my post on Monday:

The extraction “felt wrong on some fundamental level”

I think anyone would feel depressed if they were constantly being reminded of something they considered fundamentally wrong!

Part of me remains convinced that “I had a perfectly healthy tooth pulled for no good reason” – even though that wasn’t the case at all. Multiple examinations revealed the tooth to be dead. The x-rays showed that there was a problem in that area. The dental professionals who examined me noted swelling in my gums and attributed it to that tooth. I saw the infection on its roots with my own eyes!  The tooth needed a root canal; I saw an endodontist who attempted the procedure but only succeeded in causing me more pain. Instead of risking a repeat experience, I chose a treatment that would be faster, easier, and possibly even more effective. At the moment I’m not happy with the results because I’m in even more pain. (I keep reminding myself that Mom regretted her knee replacement surgery when she was first recovering from it, but has since experienced improved quality of life and recommends the procedure to others.) Time will tell whether this has helped at all, or only caused more problems…

The point is, the belief that “I had a healthy tooth pulled for no reason” is irrational and factually incorrect. The tooth was not healthy, and I had justifiable reasons for getting it pulled. Extraction may not have been the recommended treatment or even the best treatment, but it was MY decision to make. Others may disagree with my decision, I may even regret my decision, but none of that makes it wrong.

I know this rationally but can’t shake the feeling that not only have I done something wrong, I am wrong. I was supposed to keep going back for endodontic treatment and thank the endodontist for hurting me, regardless of whether she was able to solve the problem that brought me to her in the first place. (Because that’s what she suggested, what Mom seemed to want, and what I agreed to at the time.) That I even thought to do anything other than conform to the protocol “you are a patient; you comply with whatever treatment your healthcare provider recommends” is proof that there is something wrong with me!

When I talked to Wakana about this on Wednesday, she asked if there was anyone in my life who taught me that I was wrong in some way. Thinking about it now, there are a lot of people whose behavior may have given rise to that belief: family members, peers, teachers and other school officials, mainstream media… but we ended up talking about our favorite topic: my mother.

I mentioned one way in which Mom has communicated to me that I am wrong: by telling me I’m like the “opposite” gender from the one I was assigned at birth, as an insult. She’s been doing it since I became a teenager. Wakana urged me to write about how that might have influenced the development of my queer gender identity. Part of me wants to comply and learn that I’m actually cisgender, which would make my life a million times easier. (I suspect it’s the same part that insists I gave up a “perfectly healthy” tooth.) Part of me thinks my desire to be cisgender purely so I can access the associated privilege is evidence that I am, indeed, transgender. Otherwise I would just identify as the gender I was assigned at birth, decide how I want to deal with some of my behaviors not conforming to my mother’s expectations, and move on with my life. Right?

I explored the topic somewhat and came to the conclusion that my mother’s expectations for the gender I was assigned at birth are limiting; I’m pretty sure her expectations for the “opposite” gender are just as limiting. I could not conform to them even if I were cisgender; if I’d somehow managed to do so she probably would have expressed disapproval anyway (of that or something else).

The problem isn’t my gender identity (which I’d really like people to accept), it’s that my mother doesn’t see me as a complete human being who is separate from her and has the right to make independent decisions. She sees everything I do through the lens of her expectations and me not meeting them. It often seems as though she goes out of her way to express disapproval, over whatever else she might be feeling. This problem originated long before my early teenage years, possibly when I was born!

Actually, I think she’s learning to see me as a separate person and respect my right to make independent decisions; our relationship has improved quite a bit since I’ve been in therapy. She hasn’t given me a hard time for deciding to have my tooth pulled; all the criticism of that decision has come from my own mind. The real problem is that I’ve internalized her (and others’) disapproval and feel on some fundamental level that it’s wrong for me to make my own decisions. I’ve internalized the belief that I must conform and go along with what other people seem to want from me.

Regarding my gender: I’m pretty sure I’ve always perceived the division of people into “men” and “women” as arbitrary. I know what the expectations for the two widely-recognized genders are – and I know that a lot of people are trying to weaken or even eradicate those expectations, so men and women can just be themselves (these people are called feminists). I know that a lot of men and women defy those expectations, to the point where one can’t use behaviors, interests, aptitudes, beliefs, or even biology to define “men” and “women” as two mutually-exclusive categories. As far as I can tell, the only universal difference is that all men identify as “men,” and all women identify as “women.” This isn’t to say that gender is a choice – if that were the case, I think we’d all be men and reap the numerous benefits. Gender is an inherent sense of self that may change over time but can’t be intentionally altered.

So, doing things that Mom associates with the “opposite” of the gender I was assigned at birth is not the basis of my queer gender identity. I could say “I am a [the gender I was assigned];” that would make things at lot easier for me, and everyone around me. No one would question it. I doubt anyone would even ask me to change my behavior to meet their expectations. I could be myself and use that label and let people refer to me using pronouns they already know…

But I’d be lying. I don’t identify as a “man” or a “woman,” I identify as a “person outside of the gender binary.” I am not a man, nor a woman; I am a person outside of the gender binary. I could allow you to categorize me as, well, whatever you’d like! for your comfort and convenience… but I can’t inherently identify with whatever you choose. It’s just not in my nature – any more than it’s in my mom’s nature to identify as a man or in Fox’s nature to identify as a woman. All I’m asking is for people to respect that.

Unfortunately, people are going to perceive and treat me the way they want, no matter what I do. They may express opinions about the decisions I make. This applies to so much more than gender and dental treatments; it’s just a universal fact of life. There comes a point where I just need to decide that I am what I am, that I make whatever imperfect decisions I make, and that other people’s perceptions of me are their business, not mine. Whatever they send my way need not impact how I perceive or treat myself.

Burn, Baby, Burn(s depression checklist)

I’ve been tracking my symptoms on the Burns Depression Checklist for another month; so far so good. (view July-August & August-September) Scores have remained in the teens on half the days, a phenomenon that was previously unheard of. My average score for the month was a 22, which is 10 points lower than last month!

A graph showing Ziya's scores on the Burns Depression Checklist from September 16, 2014 to October 16, 2014.

Ziya’s scores on the Burns Depression Checklist from September 16 to October 16, 2014.

There are several factors I believe have contributed to my improved mood. Reading The Drama of the Gifted Child inspired some profound healing in the last full week of September. The most conventionally “sane” way to word it is probably that the emotional and presenting-myself-to-the-world aspects of my psyche became more integrated, so I can acknowledge, express, and act upon my emotions more easily. This helps me to feel more alive; all the energy that went into suppressing my emotions is now available for, well, whatever I want to do. It’s wonderful and amazing and just… Wow!

I started taking the Lamictal my APN prescribed on Monday, September 29th. This is represented visually on the graph above by a vertical purple line. I’ve been taking the Lamictal consistently at about the same time every day for over two weeks. I hesitate to say it’s working just yet, but so far I’m feeling very positive about it. In addition to the Lamictal, I started taking Omega 3 and Vitamin D supplements on October 8th.

Additionally, Fox was offered a job that he’s really excited about, and not just because he finally has income! His energy levels have skyrocketed since he started working; that’s been a huge inspiration for me. I get the time to myself that I’d been craving, and when he’s home I’m thrilled to spend quality time with him. We actually have things to talk about because we’ve been having different experiences all day! There are adjustments, as always, but overall it’s been a real boon to our relationship. I wasn’t kidding when I said the sexiest thing he could do was get a job…

Finally, the dates that have a blue horizontal line under them in the graph above are days I spent with Banji. This past weekend was particularly wonderful; we got away from the stress of our respective lives and got to spend a few days talking, making art, playing music together, and enjoying the fall foliage. I went about 24 hours without using a computer or smart phone and it was amazing! I had all this time; I didn’t know what to do with myself! So I colored in my sketchpad, took a walk outside, tried to sneak around like my Skyrim character, and interacted with living breathing 3-dimensional people using spoken words, vocal inflections, and facial expressions. And laughed, oh, the laughter! I even cooked and cleaned up afterward!

By the time I got home I was a bit tired of socializing and just wanted some time to myself. I tried to play The Sims 3 – not the best or healthiest choice, I know – and ran into all sorts of crazy glitches. I got very frustrated because people kept interrupting me, especially my mother. I try so hard and I think she does too but I still find our conversations to be emotionally draining – especially when she’s hounding me about the things I still need to do for the wedding. That just makes me want to shut down and block everything out even more!

Considering the abrupt change from vacationing with Banji to feeling emotionally drained at home without her and not coping all that well, I’m optimistic to see my scores gradually climbing from 13 on Monday to 30 yesterday. It’s less disruptive than the wild oscillations I’ve experienced in the past; I expect that I can bring the score back down (representing a reduction in depressive symptoms) by practicing some of the things I enjoyed so much while on vacation: less time in front of the computer, more time engaged in creative pursuits. Another way to reduce my symptoms is to actually do the things Mom’s been hounding me about, because then she won’t feel so anxious anymore, so she’ll have less emotional garbage to heap on me. This solution has the added benefit of completing the steps necessary to successfully prepare for my wedding. Win-win!

In addition to the overall lower scores, I had a truly amazing thing happen last week. For the first time since I’ve been tracking, and otherwise for I have no idea how long, I had 8 consecutive days without suicidal thoughts or urges. It was wonderful! (My “relapse” yesterday was triggered by a very specific situation that has been dealt with and is easily avoidable; if I choose to write about it in this blog I’ll do so in another post.)

A graph showing Ziya's (standardized) scores on the subcategories of the Burns Depression Checklist from September 16 to October 16, 2014.

Ziya’s (standardized) scores on the subcategories of the Burns Depression Checklist from September 16 to October 16, 2014. There are multiple instances when the purple line drops to 0 and disappears, indicating multiple consecutive days with no suicidal urges!

Considering the presence of other, shorter periods of time with no suicidal thoughts or urges earlier in the month, I’m optimistic that this has the potential to become my new norm. And that, oh wow! It’s not just about wanting to live. It’s wanting and being able to live while also being true to oneself. It’s having multiple options; seeing the full complexity of a difficult situation instead of just the discouraging parts. It’s knowing where my toolbox is, seeing the tools when I open it, having the confidence to use them, and making creative use of duct tape.