Where I Am, Where I’ve Been

IMG_3171.JPG ​Note: I’ve been low on words lately, with “lately” spanning weeks. I’m still working to understand what’s been happening to me. I disappear when I begin losing words. It’s hard to explain. Communication, particularly verbal communication, becomes excruciating. So I do it as little as possible.

I can’t talk, but I can write. Or I can write, but I can’t text. I can produce spontaneous words, but I can’t reply. Or I can interact in a public forum, for a little bit, but not in a private message. Or maybe I can talk with some people but not others and who that is changes daily, hourly, even by the minute. I think about so many people all of the time and I want to say things to every one of you who has tried to talk to me and even those who haven’t tried that I think about anyway, but I can’t. I don’t like what happens to me when I try to make myself.

Maybe later I’ll be able to write more about that, to explain what it’s like and why I don’t force myself to interact much anymore. But I don’t have language for that right now, either.

I produced this during one of my especially distant periods. It’s raw, particularly in the beginning. It’s unedited. It uses lots of repetition. But if you stick with it to the end, maybe you’ll understand the title of this post a little better: where I am, where I’ve been. Maybe it will make a little more sense why I haven’t gotten back to you. Why, much as I want to, I can’t.


Nonverbal. Can I write? Maybe if I don’t see the words, if I can ignore the screen and let them come out. It’s tricky to not see words, in my head, on the paper. To not hear them. Thinking in pictures, maybe someday, if I’m lucky. Everything gets messy when the words show up. They feed back on themselves and they look wrong and they sound wrong. The correct noise is attached to the wrong word and so it means nothing to say because nobody knows what I mean other than me. The right words hurt too much and when I say them everything gets cloudy anyway so there’s little point.

Nonverbal. Not looking at the screen as I type. Trying not to picture the words, just feel them, so they don’t run away before I can get whatever this is out of me. If I see them too much they’ll scatter and I need to capture this, right now, before it disappears too. I need to hold onto it, be able to know, remember when I’m not here what “here” is like so maybe next time it’s not so overwhelming, so novel. I’m here before and will be again but it feels new each and every time. It doesn’t exist when I’m not here and I need it to, need to show it so it’s not just me and I remember why it’s so hard during the times when it’s not hard.

I’m floating. Floating. Lips are sealed together. Eyes staring off, unfocused yet focused. Sometimes people exist in the way of where I want to stare and I have to stop and that hurts too. I am motionless and that feels right, head tilted to one side. That feels right. Lips sealed together. It’s like daydreaming or meditation, here and not-here. I don’t know what my face does. From experience and history and past comments, nothing good. Nothing right. Something alarming to others. Concerning.

I am alone now. This is good. People, bodies, concern – it is too much. I don’t want concern, I want to disappear. I’m half gone anyway and it’s the pulling back that hurts. Just let me be, let me float. Let me remain detached, fearless. I am safe here and it is everywhere else I am not. Don’t bring me back, don’t force me back. This is where I need to be. If I’m here it’s because I need it. Something has propelled me here.

My friend January once told me about mushrooms. They sat in a papasan chair, frozen, sure that if they moved, the world would fall apart like so much fractured glass. And so I sit, frozen, because this feels right and to move feels like I will insert-word-here-that-conveys-the-pain-of-detonate-or-shatter-but-has-the-taste-and-feel-of-crunch-or-crumble-or-disassemble.

The spinning fan. The drip-burble of the fish tank. A spray bottle, a pine table, two sleeping cats. The washing machine clicks off. I tilt my head the other way. I threaten to crumble, crack, and tilt it back, but feel the damage already done. The safety slipping, dissipating, leaving ugly hollowness in a space only just saturated with muted warmth. It is brittle inside again. It can no longer hold me like I need to be held. Like being jolted awake, no more gentle drop into an afternoon nap; instead, exhausted, fatigued, too conscious. Nothing different, yet everything different.

I am thinking and reading and feeling and “Me too!” and then it just stops. I am here, and the messages and comments half-formed suddenly hurt too much and making them come out is torture. So I stop. Let the fragments dissipate. They are useless incomplete and there is no finishing them, not now. The endings refuse to exist, no matter how many remembered starts I carve out. So I stop, I stop, I stop, because there is nothing beyond here.

I am tilting again, now. Differently. Body instead of head, again to the right, feeling right. I don’t know when or how long it has been this way. My body does things without my attention or permission and I find myself contorted in ways that compel watchers to narrate, “Isn’t that uncomfortable?” A judgment more than an invitation, and I crack to reply, crack to comport myself into pretend normalcy again, else I am perceived rude [and that produces a different kind of crack].

What is it to you that I sit. Torso tilted forty-five degrees off center. Staring down the wall. Fingers working at themselves and keys. I don’t need the screen to see. The words appear all on their own. But it’s something to everyone. It always is. In different head state I will snark about Donna and fruit salad and white picket fences and keeping up with the Joneses and nothing seeming out of place, ever, but I am not there now and to adopt that tone hurts, so I don’t.

This is floating. This is tenuous dissociation, aware and gone, a child playing with a light switch. Off. On. Off. On. Not knowing what they do, appreciating nothing beyond the plastic beneath their small fingers, the shift between light and dark. Do lamps scream? Is the sudden transition between electron flow and cessation as brutal and binary as being ripped back to reality is for me?

I don’t want to be there. Here. There. I float because it is safe. I do not want to be pulled back. Let things change around me. So little matters, truly. Meals can be taken later. Washing is rarely urgent. Words about small ideas need not be said; it is only when being yanked back that it becomes clear how much is little more than silence filler. Few matters are hurt by muting.

Time and space slip. Another position. Once I found myself past the airport. Another time huddled against bushes. Mostly I sit, or I rock in time with my breath, skin of my lips tacky, trying not to crack. The ordinary becomes obscene. Twisted fingers, misaligned limbs, distant staring are comfort. Withdrawal is safety. Isolation is safety. I don’t shatter. Don’t [make me] shatter.
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Cycles and Seasons

[CW: assault, abuse, suicide]

I don’t remember the last time I had an easy spring. I know the difficulty with this time of year started well before the quarter system was ever a factor in my life, although that certainly doesn’t help.

It’s hard to believe 2007 was a full decade ago, but here we are, ten years later. I was in the military, still at Ft. Bragg in North Carolina. It was after I was injured and pulled from training, but before there was a plan as to what to do with me. I was in extreme pain every day, I wasn’t allowed contact with family or friends except for limited periods of time on weekends, and I had a psychologically abusive command. Needless to say, I wasn’t doing well.

This time in 2008 wasn’t as bad, but it wasn’t a picnic, either. My relationship with my then-fiancé was falling apart and I was finally understanding how severe the memory loss caused by the military really was. I got what became my last accounting job, but I had to write down absolutely everything in the notebook I used during training, including the location of office supplies and the names of the people I saw every day, because I simply couldn’t remember. My desk was littered with Post-Its. If it wasn’t on a sticky note, it didn’t exist.

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Yes, this was actually my office

In June of 2009, I gave notice at that job. It was killing me, emotionally and physically. I left it because I realized my stress level was so high, I was getting migraines every three weeks. It was like clockwork. Needing to go home, trying not to throw up on the bus, needing silence and darkness and begging for sleep even though I wasn’t remotely tired. Those kinds of migraines. I was so overworked and felt like such a failure that I was seriously considering ending my life. Then, whatever was left of my sense of self-preservation kicked in and I remembered the deal I’d already made with myself: if it’s my circumstances that are making me miserable, I’m not the problem, and therefore punishing myself isn’t the solution. So I didn’t. I quit my job instead.

Fast-forward a year to spring 2010. I was back in school, taking Calculus II and Statistics and Botany and I don’t recall what else, but I had a lot of units. Too many. It was the end of that semester when it became apparent I could no longer compensate well enough for my ADHD on my own and I needed to go on medication. I survived it, but I didn’t do my best work, and again, I was very stressed.

Spring of 2011, I failed Zoology. Although that was a blessing in disguise because I got another semester with Nick as my professor when I repeated it, at the time it was becoming very clear to me I wasn’t managing my life well, nor had I been for some time. The worst part was I didn’t really know how to fix it, other than it being clear something needed to change.

We won’t talk about 2012, nor 2013, but take my word for it. They were bad.

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I don’t even know how much of this I drank. It might help explain the whisky intolerance I’ve developed though.

Then we have spring 2014, which makes most of the others look like cakewalks. It was near the end of my second year at Davis, having transferred in the fall of 2012. This was the spring that resulted in me failing all of my classes because I stopped showing up midway through the quarter. Instead, I essentially sat in my apartment and drank for three months, generally leaving only to see my campus psychologist and to buy more scotch. It was not a pretty time.

Part of what made 2014 so awful was how long everything dragged on. It wasn’t simply one, or two, or even three events. It was this steady pummeling that refused to let up. Towards the end of May that year, roughly halfway through what became my three months of binge drinking, I thought perhaps I might be able to start functioning again. I knew the quarter wasn’t really salvageable, but I figured I could at least get myself together enough to submit some paperwork to the campus registrar and possibly lessen the impact of everything on my academic record.

On May 29th, I went to an outdoor potluck. It was there I met the person who became an integral part of my life for the next two and a half years. Later on, at an after-party, I was sexually assaulted by someone else. It wasn’t the first time I’ve been assaulted, but the context made it particularly terrible. This was supposed to be a pro-consent environment. Ask first. Don’t assume. Even worse was that during the casual group conversation at the potluck, I’d been going on about parts of my body I did not like touched. I was very, very clear about that, and I was very clear about what sorts of people did and did not have access to my body. This person did not. Yet that night, pinned below him on that couch, there he was, assuming himself over me and in me, doing the very things I’d said earlier I hated. I almost wish I hadn’t been sober. But I was.

It was because of the “ask first” mentality that I knew without a shadow of a doubt what he was doing was wrong. Unlike in mainstream society, there was none of this ridiculousness about expecting it’s permissible to do things to people until they say no. The rules are, you don’t do it unless you ask, and you wait for a clear, positive response. It was what gave me the courage to talk about it at the time and is also partially why I am able to be as open about it as I am now.

Paradoxically, that also did its own form of damage. I was telling him to stop, I should never have had to tell him to stop in the first place, and yet I couldn’t make it stop. At least previously, I could delude myself (mostly) into thinking it was partially my fault for not being forceful enough about saying no or about fighting someone off. I didn’t have to face the cold reality that I really, truly, did not have control. I could pretend I did. Even if that meant blaming myself for things I never wanted to happen. That wasn’t an option with this one.

Anniversaries are tricky. My Facebook memories for this time last year keep showing me all of the things I posted about Brock Turner, the Stanford rapist. While I haven’t, thus far, shared any of them, it’s been a steady theme over the past several days in the history of my feed. It’s not lost on me that the news about his pitiful sentencing broke just days after my annual reminder of my assault.

What I was not expecting was the head-trip brought on this year by no longer being with my aforementioned partner. Make no mistake: in the time we were together, he left permanent marks on me I never would have consented to (had I been given the opportunity), he lied to me repeatedly, he manipulated me to the point that I was terrified of telling him no or upsetting him, he hit me out of anger, and he did everything he could to make me feel like what happened was my fault. He caused me so much harm it would take hours to explain all of it. Indeed, he was almost always the primary topic of conversation with my therapist, both during our relationship and for some months after.

But he was also the first person who was there for me after being assaulted. I managed to make a post about it on another social media site, which he saw when he got up the next morning. We had swapped numbers the prior evening and he texted me to see how I was. We went out for coffee. Whether or not he was white-knighting and using this as an opportunity to get close to me while I was vulnerable, I can’t say. But he listened to me talk. He believed me. He made sure the person who assaulted me was gone from the community, instantly. For the next two years, he was there for me on that day.

Spring 2015, Nick died. In the eight weeks that followed, outside of necessary communication at campus, I spoke to approximately four people. My father was one of them. This partner was another. While in that time he also nearly managed to destroy my relationship with my best friend, he was still there for me. I had two tracks: School and Go Away. I couldn’t even make small talk with classmates who wanted to chat while waiting for office hours. Material questions were fine, but as soon as they asked me about what other courses I was taking or why I chose my major, I stopped talking completely. It wasn’t even a matter of not wanting to interact; I simply couldn’t. The words disappeared. I felt nothing but body-wracking grief and pain. The moment I wasn’t focused on schoolwork, that became my entire existence. He was the only one who could bring me out of that and keep me distracted from it, if only for a little while.

Spring of the next year, 2016, he and I had split up, now for the second time. We had an argument in which I stood up for myself and he simply stopped talking to me. Given the depth and intensity of our connection, it was torturous, but I also knew by that time he was not good for me. I still wanted him, but at least intellectually I knew. Which was why when he came crawling back, three months to the day he’d disappeared from my life, I knew it was a terrible idea to let him in again. But I was in immense pain and I needed to know what happened and why he’d done it. I needed to believe, even for a little bit, that things could be okay once more. And so he was again there for me on May 29th, the date that marked both our two year anniversary and the second anniversary of the assault.

He wasn’t here this year though. My feelings around this are complicated. I am so very thankful he is no longer in my life in any capacity. What he did to me should never happen to anyone. Until very recently, I lived in fear that I was going to stumble through a good portion of the rest of my days, always at risk of finding yet another version of him.

I was talking to a very close friend when I said I can’t do that again. I can’t go through it and I can’t spend the immeasurable amount of time and energy fixing the kind of damage people like him cause. I can’t put my support network through it, either. But in that conversation, my friend told me I would never be with someone like him again. She said it with such utter confidence that it hit me: the people who truly know me have more faith in my ability to make good decisions for myself than I do. It made me wonder what they were seeing that I wasn’t. So I started looking.

I realized very quickly she – and others – are right. I can trust my judgment. I can trust my observations and evaluate for myself what is and is not acceptable. Of course, I still tend to check things with others for reasonability. We are social creatures after all, and I am surrounded by some very strong, sensible people. These are the people who were there throughout the years of awfulness. They are the ones who provided countless, much-needed sanity checks and who validated my perceptions through the gaslighting, the double-speak, and the attempts to make me feel wrong for simply being a person and having needs. So when they tell me I’m ready, I believe them. Because I am.

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Accurate depiction of my life

In keeping with tradition, this spring has been one continually raging dumpster fire. So many things have happened over the past few months I can’t keep track of them all. Medical, physical, academic, interpersonal, administrative — pick one and I’ve had a minimum of three explosions in it. It would be easier to list the areas that haven’t been repeatedly blown up than the ones that have.

That’s not to say decent things haven’t also happened. There are many times I’ve been incredibly happy. I’ve had two outdoor climbing trips where for several hours, everything in the world outside of my breath and my gear and the rock face ceased to exist. I’ve gone indoor skydiving, and aerial is a continual source of renewal. I’ve had parties and shows and nights out with friends. There’s been a lot of good. There’s just been a significant amount of life-derailing awfulness too.

In less than two weeks, I’m graduating. It’s bittersweet. The day of my commencement is inseparable from the discrimination I’ve faced at campus, both relating to the ceremony itself, as well as throughout the duration of my time at this university. Rather than finishing strong and being truly done, I’m taking incompletes in two of my classes, which means I’ll have some work to take care of after graduation. But I also have professors willing to work with me and who understand life rarely happens according to plan. I’m immensely grateful for that.

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Can’t tell from the photo, but this was halfway up a roughly 80 foot climb (and yes, I made it to the top of the route)

I don’t know what things will be like in a year. This is a huge transitional period for me and very little is staying the same. My life will be radically different from now; that is guaranteed. Although looking back, every year has been like that, truthfully.

Perhaps that’s not such a bad thing. Through all of this, I have been continually learning and challenging myself to move beyond where I was before. I am not the person I was a decade ago. I am not the person I was a year ago, or six months ago, or even three months ago. The one constant in my life is my refusal to stagnate in my personal development. I learn more about myself, the world, and how I want to be in this world every day.

I can write emails now. I can message my doctors, not just once but repeatedly. I can advocate for myself. I can ask for help when I don’t know what to do. I can set limits and boundaries. I can acknowledge my own needs without shame or apology. I can say no.

Growth tends to come with a high cost. It’s exhausting. It’s painful. It’s isolating. You tend to lose people. You spend a lot of time on unstable ground. You lose your sense of what is absolute and concrete and that can be terrifying. But you gain so much more in the end, if you’re willing to do it. I can’t look back at my history, history that includes even today, and not see the incredible amount of work I’ve put in and the level of self-development I’ve achieved.

I never thought of myself as resilient. Turns out, I am.

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On Origins, Transformations, and Nick

It’s been two years to the day since Nick died.

I have a hard time talking about it. See, I can talk about Nick himself just fine. The number of times I’ve mentioned things I learned during his classes, the stories I’ve relayed about his method of teaching — that’s easy. It’s when I try to talk about the grief it gets hard. Really hard. I still am not good at it.

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Nick (left) discussing various tide pool residents

It’s not simply grief inhibiting me; it’s that when I attempt to describe what Nick meant to me, there are so many things I need to say that most times I’m unable to say anything at all.

But I need to talk about it because the effect he had on me is not just part of his legacy. It’s part of my past, and it’s part of my present and future as well.

I am a radically different person today because of meeting and learning from him. If I am to carry on the work he started, I need to talk about where it began for me and why losing him caused such devastation in my life.


A year and a half ago, I had to write a series of gratitude letters for a class I was taking. It was seven months after his death and I wrote one to him. I couldn’t share it at the time, nor even on the first anniversary of his death. It was too raw. Too personal.

To say the process was excruciating almost captures the magnitude of what I felt during it. Almost, but not quite. It was also more necessary than I understood at the time. It’s been two years though, and a year and a half since I wrote that letter. It feels unfinished, the ending abrupt. But that’s what sudden death does. There’s no closure. It just…stops. Everything stops and there’s no opportunity to say those things you discover only afterwards you so desperately need to say. I easily could’ve gone for another several pages and it still wouldn’t have been finished. This is the best I could do then and it had to be enough.


Dear Nick,

I’ve been putting this off and writing drafts to you in my head for weeks. I don’t know why it’s been so difficult for me to put things down on paper. The advantage of writing to someone who’s dead is it doesn’t have to be perfect; it can be awkward in places and that’s okay because you’re never going to read it. All the embarrassment or vulnerability I may feel is completely internal. There’s never going to be a chance for us to interact around it. There’s no risk of either rejection or connection. There’s no risk of anything, because you’re gone. Yet somehow that hasn’t made this any easier.

When I asked my professor if it was okay to write a letter to someone who’s dead, even though it means we can’t technically deliver it to them, I knew it was the right decision to write to you because you showed up in a dream I had that night. Granted, if I’m reading emails before bed, some of those inevitably make it into my dreams, so it could be argued that it’s simply my brain doing its nightly work of processing and consolidating the day’s events. I’ll allow that the conversation my professor and I had provided the impetus for you being in the dream itself, but it doesn’t explain the contents.

When you died, so many people came out of the woodwork to grieve your death, and to celebrate your life. You were generally humble, but I know you had to have some appreciation for the scale of impact you had.

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Two in one! Turns out mice really like oats and peanut butter (yes, they were released)

For me, what hurts the most is the aborted future. I remember the last time I saw you. I called my trips back to see you at SRJC my “spring break pilgrimage to visit Nick.” I remember the energy we shared. Visiting you was always like having a crash course in the fundamental goodness of humanity. I remember talking about my health taking a nose-dive and how I was dealing with that. We discussed the duality of nature, and of existence. About how everything can be total shit and yet simultaneously miraculous. We both wished we had more time.

I remember one of the stories I told you. It was about when my father’s aortic valve failed. He had the surgery to replace it with a mechanical valve the summer before I started at Davis. During the three months he had off from work, I spent almost every weekday with him. As the prostate cancer was also back, he decided to start radiation during that same period since he was already home. He couldn’t drive for several weeks; in fact, he had to sit in the backseat whenever he was in a vehicle due to the damage that an airbag could do to his still-healing sternum and ribs. So I spent that summer with him doing puzzles, watching Crossing Jordan, talking about the cats, and driving him to and from radiation.

To date, it was the best summer of my life, and it happened because my father had two life-threatening health conditions. That is the duality of life. And that is something you understood. Fundamentally.

If anything, I learned it from you. When I first met you, I was so angry. I was finally learning how to be angry in the first place and I had a lot of it stored up. I suppose you could say I had two possible paths: to take it out on the world, or to not. You provided the modeling I needed for how to go about the latter path simply by your choice to exist as you were.

I was struggling in so many ways — it’s only hindsight that really shows me how much. At the time, I was a smart kid with unmanaged AD/HD who had never needed to develop study skills. (I say “kid” even though I turned 23 that semester, but it’s true what people say — you really are a kid until hitting 25 or so. At least, was the tipping point for me when I started to feel genuinely different. I know for other people it happens closer to 30.) I’d been through a lot of shit by that point already, none of which I felt I could talk to anyone about. I was frustrated with everything. And all of a sudden, I was thrust into a class that required a level of work I had no idea how to go about doing. To say I failed to meet the challenge that semester would be accurate.

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I learned more getting that F than I have getting most of my As

But here’s the thing. You made it okay to fail. From the outset, you made it very clear what your standards and expectations were. Yet there was no judgment involved. The very first day of class, you said, “Sometimes things happen and those things affect your grade. It’s okay. You can come back and try again.” So when it became clear to me that, after being up all night the night before the final, there was no way I was going to pass it — or the course — I went to your office the following morning, shortly before the final was supposed to start. I told you I wasn’t going to take it and I told you why. Part of me still hoped there would be a solution available that didn’t involve me failing the class — wishful thinking and all that — but there wasn’t, and that was okay.

I also wanted to blame you for making things “too hard,” but the thing is, I couldn’t. You were too nice. You had made the path to success too straightforward. Sure, it required a lot of work, but many things in life do. Faced with other students who were in fact meeting the standards you had set, I couldn’t claim your expectations were impossible, either. High, but not impossible. That meant I had to accept failure, accept that it was due to myself and circumstances in my life, and be okay with it.

Here’s the kicker though. Never in my life had it been acceptable to fail, because failure always was treated as a reflection of who I was as a person. With you, it wasn’t. You still liked me as an individual and treated me with respect. You didn’t treat me like a failure; you treated me as a human being who ended up in a particular situation in a particular point in space and time. There was no judgment, and that was a huge first in my life.

When I came back the following semester and rocked your class, it meant something. More than the grade I got. More than earning the highest score on your final (I think not only that semester, but ever). And although my experiences in your class — both times — certainly are the reason I’ve been successful in subsequent challenging courses, it goes beyond study skills. Your class was my first real introduction to the idea that my worth as a person is not and should not be based on external metrics. Of any kind. You modeled non-judgmental love, and you made it okay for me to love myself as I was. I didn’t have to be “good enough” anymore; by my existence, I simply was good enough.

I took that and I ran with it. I take credit for putting in the work, certainly, but you provided the spark, and for that I am eternally grateful. Every day, you chose to be the best, most loving person you were able to be that day. And as you said, loving people is hard. But you did it. You did it in the best ways you knew how, and it changed people. It changed me.

b83ce800-be9b-4c2b-adfa-c2d67c21c9acThe fall prior to the last time I saw you, as you know, my body and my life were falling apart. I was barely making it to lecture (I’d considered not even coming back to UC Davis at all), I was fighting Kaiser to get any sort of treatment, and my then-fiance’s father had just been diagnosed with colon cancer. Yet there was one day, standing at the sink washing dishes, that I was able to look out my kitchen window and appreciate just how gorgeous the fall leaves were on the trees. I was able to hold the misery, frustration, and pain I was experiencing in one hand and still see the beauty in the world. I learned that from you. I had to put in the work to be able to genuinely do it myself, but you provided a great model.

I feel fortunate I was able to share that story with you the following spring when we met for coffee. We connected around that, and it felt like we shared this wonderful secret that few people ever get a chance to encounter. I’m grateful I was able to be another soul in this crazy world of ours who gets it, and to show you I get it. As wonderful as it can be, it can also get quite lonely. Practicing love, practicing compassion — it’s hard. It’s worthy work, but it’s hard.

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It was the first thing I read when I opened my phone that morning

One of the things that is still hardest to deal with is how sudden it all was. And the timing. I finished my last final of winter quarter on a Tuesday. I was gearing up to make my spring break pilgrimage the following week. And then that Thursday, I woke up to that text from Rachel saying you were dead. I wanted to hurl my phone across the room. I was supposed to be seeing you the next week! How could you be gone? You couldn’t be. I’ve been struggling with so much, had been struggling with so much, had changed so much over the prior year, and with no warning, you had blinked out of existence. Gone. Just like that. A few days before I was supposed to see you. We had crossed that line from teacher and student into friendship, and I valued my connection with you very much.

I’m thankful that while you were alive, you were able to see the positive impact you’d made on me, but I wish like hell you were still here. We resonated in a way that is rare outside of — and even inside of — meditation centers and various spiritual practices. As I said, it gets lonely. Figuring out how to be simultaneously assertive and loving, continually, is hard. Fighting against systemic injustice while practicing compassion is very, very hard, especially in the face of all the anger I feel in response to watching people be hurt. You were someone I could talk about these things with and get real advice, and now I don’t know what to do. I’m stumbling through on my own and doing the best I can, but it sure would be helpful to have you here.

I’m grateful I knew you while you were alive. I’m grateful that failing your class the first time around meant I got to have two semesters with you rather than just one. But I wish I could be saying these things to you in person.

As always – love and light,

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Nick, hard at work during our Zoology lab

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It Never Ends

Bang Head HereThe other day, I had possibly the worst conversation I’ve ever had with a doctor – and I’ve had some truly unpleasant interactions in my time.

It was a phone appointment with my psychiatrist to discuss a dosage increase for Adderall XR. As of the last couple of months, it’s no longer as effective as it has been. I’m blanking out in the middle of conversations, I’m unable to consistently focus my attention on the task at hand, and I’m more distractible overall. All of this is significantly impacting my academic performance, as well as my ability to manage my life in general.

I’ll start with a summarized version of our conversation, followed by analyzing the numerous issues it contained.

Me: “I’ve increased trazodone and midodrine. Given when all these things came about, I think being on testosterone is leading me to metabolize things quicker.”

Him: “Well trazodone’s effects can last into the daytime.”

Me: “So you’re saying the amount that may be persisting into the daytime is significant enough that it’s canceling out the effects of Adderall to this degree?”

Him: “Yes. So you should decrease it.”

Me: “Well, I increased it because I’m not sleeping through the night without it, and I’m an absolute wreck without proper sleep.”

Him: “Well you need to get decent sleep.”

Me: “I completely agree.”

Him: “The gender change is through UC Davis, right? You need to talk to that doctor about your medications.”

Me: “Well, my testosterone is pretty much at a fixed level. I can talk to my sleep medicine doctor about things and see if he has any suggestions, but this is part of the plan we settled on when I last saw him. Now, I have a sleep study scheduled for late December to evaluate underlying issues. We’re waiting until then because he wants me off Adderall (among other things) for two weeks prior to the study, and going off it now will negatively impact me academically, so we’re in a holding pattern until then.”

Him: “Well you need decent sleep.”

Me: “Yes, and that’s why I’ve increased the trazodone. I’m more than happy to discuss this with my sleep medicine doctor and see if there is something else we should consider, but there may not be.”

Him: “Well I’m not increasing the Adderall.”

Me: “And that’s fine, but I need other options.”

Him: “Talk to your sleep medicine doctor.”

Me: “As I said, I will email him, but I need options.”

Him: “I’m not increasing the Adderall. I’m done arguing with you about this. I have other things I need to do. I need to go.”

Me: “Wow.”

There’s a bit more that was said, but that’s the gist of it.


Make it stop make it stop make it stop

Make it stop make it stop make it stop

To start with, I think there is some bias occurring due to me being transgender his feelings about trans-related medical care (his inability to deal with my existence is not my fault).

Given that his immediate response was not that I should consult with my sleep medicine doctor about my trazodone dosage, but that I should talk with the provider who is managing the medical components of my gender transition, it is my belief that he views testosterone given for gender alignment purposes as a nonessential medication, and therefore not a reason to consider adjustments to other medications. (WPATH and other knowledgeable sources have repeatedly affirmed that hormone replacement therapy is anything but inessential, and treating HRT as anything other than a medically necessity is discriminatory.)

His referral to my transition as a “sex change” when I first mentioned it several months ago, as well as his addressing me by my legal name and not the preferred name I have on record with Kaiser (even though my other providers there seem to do just fine with this) adds to my suspicion.

Next we have his refusal to consider the possibility that testosterone may be leading me to metabolize medications more rapidly. Given the complexity of the human body and how little research has been done on the effects of cross-sex hormone therapy on medication metabolism, my theory is equally as plausible as his.

In fact, I think it more likely that testosterone is leading to me metabolizing trazodone at a greater rate, which is why the prior dose of 50mg stopped being effective. This is why I increased it: because it was no longer working at a lower dose. I think that testosterone is also leading me to metabolize Adderall XR more rapidly, which explains why even though it is the extended release version, it does not maintain its therapeutic efficacy beyond roughly three hours at this point.

If it was truly the lingering effects of trazodone canceling out the Adderall XR, then if anything, the pellets with the coating designed to break down first should be what trazodone is neutralizing, and I should be feeling the effects from the pellets with the longer-lasting coating. In fact, the timeline is reversed. I experience therapeutic effects initially for a short period of time, and nothing after that, which doesn’t make sense given that I’m taking the extended release version.

If we follow his theory, we wind up with Schrodinger’s metabolism: testosterone is causing me to burn through trazodone faster (but only trazodone and not Adderall), yet somehow it’s slow enough that trazodone is decreasing the efficacy of the Adderall (even though the Adderall is working at the point when daytime levels of trazodone would be highest).

spock-fucking-illogical

Even if we suppose his theory is correct (and there is good reason to suspect it is not), it is incredibly hubristic to insist I manage this by modifying a sleep medication regime it has taken well over six months to establish. He wasn’t simply requesting I consult with my other doctors before making a decision. He was adamant that not only should my other doctors be the ones to manage this, it should be done by changing my other, equally essential medications – medications which are effective at their current dosages.

Assuming safe prescribing ranges, I cannot think of another situation in which a doctor would refuse to modify the dosage of Drug A when the addition of Drug B may be impacting metabolism of Drug A, whether directly or indirectly. However, that is exactly what he claimed was “not a solution” during our conversation. To me, this looks like a failure to adhere to the accepted standard of care regarding medication management.

Taken as a simple matter of logic (which, truthfully, it is), if two medications are as they should be and the third may need to be modified as a response to that, it doesn’t make sense to upend the entire balance simply to avoid dealing with the third. Unfortunately, that is exactly what is occurring.

It is a realistic possibility that nothing in my existing medication regime regarding testosterone and my sleep medications can or should be modified at this time. In the event my other doctors and I determine that to be the case, I wanted to know what would be the next step. Instead, he offered nothing but resistance. If he had wanted me to discuss the situation with my other doctors and then get back to him, I would have been fine with that, as that is a perfectly reasonable plan of action. However, he fixated on not increasing Adderall and refused to consider the matter further.

So suck it up and deal with it, Dr. Princess.

So suck it up and deal with it, Dr. Princess

Throughout the conversation, he did his absolute best to wash his hands of it entirely. His refusal to consider increasing my Adderall dosage was part and parcel of this. The “options” he gave me consisted of pushing the problem off onto other doctors, quite literally. While I am willing to involve my other providers in this (and I repeatedly expressed this during the conversation), his singular focus on not increasing my dosage demonstrates a rigidity that is disturbing, particularly for someone in his specialty.

My problem is not that he was unwilling to immediately write me for an increased dosage. My problem is that he treated me as if I’m a drug-seeker, that he interpreted me making sure I understood the nuances of what he was saying as somehow being argumentative, and that me wanting him to be involved with my care was a burden to him.

Given that my testosterone is at a medically appropriate dose, and it is likely that my sleep medications need to remain as they are until the sleep study, barring some other solution my sleep medicine doctor may present, I fail to see how doing a trial run of an increased Adderall XR dosage is in any way unreasonable.

crackerjacksdegreeHis refusal to apply logic to this situation, as well as him dumping me off onto other providers, is both harmful to me as a patient and a poor reflection on him as a provider. His position was, quite frankly, closed-minded and irrational. His treatment of me went beyond being dismissive, inconsiderate, and disrespectful; he also failed to practice evidence-based medicine.

My methodical approach to the conversation made it clear he was both contradicting himself and abandoning his patient. When he could see I wasn’t letting him off the hook without him giving me a sound, evidence-based argument behind what he was and was not willing to do, he became frustrated that I wouldn’t simply accept his word and go away. He dealt with this frustration by becoming defensive, digging in his heels, and ultimately ending the conversation.

What he failed to remember is that what is best for your ideology may not be best for the patient. If you are not willing to consider the facts of a situation and act accordingly, even if that leads you to a solution other than what you would prefer, then you have no business practicing medicine.

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There’s Inconvenience…And Then There’s Incompetence

You know your level of irritation is high when you write “It’s midodrine, not fentanyl” in an email to your cardiologist bitching about the automated pharmacy screw-ups that have now left you without an essential medication for who knows how long.

He pushed it through on Tuesday. Since it’s not one that is kept in stock at my local Kaiser pharmacy, it takes them two days to get it in. I called on Thursday and the automated refill line informed me it had been mailed from the distribution center. WHAT THE SHIT. IT WAS SUPPOSED TO BE FILLED LOCALLY. MY CARDIOLOGIST SAID IT WOULD BE FILLED LOCALLY. As this pharmacy is not open on weekends, it wouldn’t have done me any good to go down there and have them order it because the earliest they would have it in is Monday.

I already called the 24-hour Kaiser pharmacy in the next town over to see if they have it in stock. After multiple phone system rerouting problems (more fun dealing with automation doing the exact opposite of what it was supposed to do when it was implemented), I spoke with a very pleasant tech** who said no, they don’t have it either; they too would have to special-order it.

Now, even though the mail-order system says 7-10 days, often I’ll have it in my mailbox before I even get the automated phone call from Kaiser telling me it’s been mailed. No such luck this time! (Of course.) It wasn’t there today. Fingers are crossed it will arrive tomorrow.

The thing is, this would all be solved if the automated system didn’t lock me out of the refills that my cardiologist previously authorized. I had to email him in the first place because Kaiser’s “convenient online ordering system” kept telling me “According to our records it is too soon to refill this prescription” and wouldn’t let me click the stupid reorder button.

While I’ve been taking it much faster than it was initially written for, this is with full knowledge and approval of my cardiologist. My bottle says five refills remaining. Midodrine is not a controlled substance. I should be able to access those refills.

This wouldn’t be an issue if I had my medications through CVS or a similar pharmacy. I know because a friend of mine spilled almost a whole bottle of their beta blocker on the ground. Since they had refills remaining on it, what did they do? They pulled up the CVS app and ordered another bottle. I was like, “Whaaaat? But but but…you can do that? You don’t have to call your doctor’s office first and explain what happened as if you’re five years old and then have them call the pharmacy to authorize an early refill for you?” (No, apparently they did not.)

Interestingly, I could refill my zofran almost as soon as I initially filled it, even though my PCP wrote it for a roughly three month supply. It’s been barely a month, and there it sits in the pharmacy center screen, being all “available for refill” and shit. It’s like it’s taunting me.

But midodrine? Which, in terms of its importance in my life, is equivalent to an anti-seizure medication? HAHA NOPE SCREW YOU KID.

I mean, don’t get me wrong, the nausea is pretty debilitating too, but there are alternative medications that can be prescribed if one is out of stock and my need is immediate. I don’t have that option with this one.

This is legitimately the medication I take before I’ve even left the pharmacy counter as I wait for my credit card to process because I’m in such rough shape without it. I’ll dry-swallow it if I have to (and it’s nasty) because it’s that essential.

I ran out yesterday. (Okay technically I have 60% of a single dose left but I’m saving that because I need to be functional tomorrow evening way to be overly technical people JEEZ.)

Now, I’ve only passed out twice today (this is what I mean when I say without my meds standing sucks), but that’s in part because I’m pretty good at dropping my ass to the floor as soon as I get the nice sparkly black bits in my vision. (I said pretty good. I didn’t say perfect.)

Also, I may or may not be mostly butt-scooting from room to room. (Living in a 350-square-foot shoebox can be handy at times.) I’m writing this post from my living room floor, and while my knees and spine hate me for it, my brain really appreciates not having to fight my legs to get enough blood.

We never should have become upright creatures. Bad news, all of it.

**Pro tip for my newly chronically ill folks: Always be nice to the pharmacy techs. ALWAYS. These are the people you are saving your niceness spoons for.

1) Given the opportunity, they will bend over backwards for you, and if you are a frequent flyer (hello!), that can be essential when you are feeling horrid and need something fast. If they know you as the friendly customer who genuinely respects and appreciates the work they do, they’ll help you out.

2) Even if you get the rare one that is terse with you, be nice anyway. It’s not you. It’s almost never you. They take a ton of abuse from customers and can only handle so much. You probably caught them on a particularly stressful day and they’re wondering if you’re a real human being or yet another grizzly bear in disguise. Spend the energy to smile at them. Why? See number 1. Trust me. It’s worth it.

3) If it seems like it is you, check your prescription. If it’s for a controlled substance, specifically an opiate or a benzodiazepine, and it’s written for a small number of pills, they might be looking at you a little askance. The drug-seeking patients who found a doctor willing to write them 10 vicodin just to get them out of their hair? That pharmacy tech sees them. All of them. Far more than you or I or even any doctor will see, because those people have to get those scripts filled somewhere.

I know, I know, it’s not your fault, but the nicer you are, the less they’ll think you’re one of “those people” and the more they’ll think you’re a reasonable human being who has a legitimate issue for which you’re being prescribed meds.

4) Of course, this doesn’t take into account the current access problems we’re having in the US regarding long-term opiate usage for chronic pain. This is one of the few times being in a closed system like Kaiser can be a good thing: if it’s prescribed, they give it to you.

On the other hand, pharmacies like CVS that have thrown chronic pain patients into withdrawals due to their bullshit internal checklists regarding doling out opiates? They can choke on a giant bag of dicks. A giant bag of dicks, for that matter. But still. Be nice to the techs, because they don’t create the policies, they’re just the first to be fired if the policies aren’t followed. It’s not their fault.

Why yes, I do indeed take a lot of pills. Why ever do you ask?

Why yes, I do indeed take a lot of pills. Why ever do you ask?

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Physical Therapy You Were Never a Friend to Me

I finally got back on the physical therapy wagon today. (Read: ow ow shit damnit ow.) I took a break for a couple weeks to deal with the start of classes, as well as some stuff in my personal life. (When you measure your energy in tablespoons, even essential things get cut.) However, as of this afternoon, I’ve picked it up again. An hour and a half of lower body exercises and stretches later, I went from having the heater on in my apartment to flipping on the air conditioner, so I certainly wasn’t slacking.

Not as much changed as I thought. I’ve lost a bit of strength here and there, but I still did everything with added weight. Clearly things didn’t degrade much.

The right side of my body is still distinctly weaker than my left side. While I find it annoying, it’s been going on long enough that it isn’t unexpected at this point. It’s not simply that it fatigues more quickly; I have problems with muscle recruitment from the beginning.

If I were to draw out what my muscle contraction looks like over a set of exercises, the shape of the graph for the left side of my body would be like a platform with a playground slide towards the end. I start strong and then taper off as successive reps wear out my muscles.

The right side is like a standard bell curve: hard at the beginning and hard at the end. Once my muscles get used to the motion, that’s when they start to contract with more force, but it doesn’t last long. Along with the perpetual hamstring weakness (despite there being plenty of muscle in the area), it’s more evidence that I’m having underlying neurological issues, but I can only handle dealing with so many problems at one time. Right now, my focus is my knees, as that’s the reason I’m doing this round of PT anyway.

All the muscle, none of the coordination

All the muscle, none of the coordination

If I’m honest though, I’m not seeing much of a difference. My pain with standing and walking is about the same as it was in the beginning, both the level and the time until onset. My cheapo hinged knee brace from Rite-Aid frankly does more to keep me functional than the 45+ hours of physical therapy I’ve put in so far. This is a pretty poor return on investment, if you ask me.

On top of that, I’ve come very close to dislocating my knees a total of four times (twice per knee) in the last few weeks. My fibula already partially rolls out of the joint, but this is a different type of slipping. It’s more lateral, whereas the hypermobility around my fibula is rotational.

Since I am noticeably building muscle in my legs (even though half the time it won’t contract for shit), I’m lightly theorizing that under certain types of loads, the added muscle is more likely to pull things out of place. Fundamentally, my joints move in ways they aren’t supposed to, and now it feels like I have the strength to (inadvertently) force a joint completely out if it gets put in the right-wrong position. It wouldn’t be the first thing in my body that works in a way opposite of what is expected, but if that is indeed what is happening, it would be one of the more counterintuitive malfunctions.

I have another appointment with my physical therapist in two weeks. I’ll talk with him then, but really, I think it’s time to seriously push Kaiser to get me custom-fit knee braces. Based on how much the store-bought one alone helps (I switch it between knees), I can only image what having durable braces to keep everything tracking properly will do for my quality of life.

Unfortunately, the fact that proper bracing of joints is considered first-line treatment for my genetic disorder doesn’t seem to have made much difference to Kaiser in terms of how they have handled my issues. As a whole, they’ve had serious difficulty understanding that joints that don’t stay in place on their own need to be held in place by external supports. (That’s not the only thing heavily documented in the literature with respect to my genetic disorder that it has taken close to an act of god to get them to move on, but that’s a rant — err, post — for another time.)

Fundamentally, my joints do things they’re not supposed to do. It’s just the way it is. They need help. While I appreciate the pretty abs I’m getting from all the physical therapy, I’m not paying Kaiser for a personal trainer, I’m paying them to help my shambling corpse of a body hold itself together. It’s time to try other things.

Like I said, they are pretty

Like I said, they are pretty

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On Socks and Motivation

I’ve found when faced with doing something I find unpleasant – continuing to exist, say – I talk to myself much as one might talk to a small child.

“Come on, brain, you can do this. I know it seems hard, but don’t think about that part. All you have to do is put on socks. You can do that, right? You like socks. They’re warm and soft and they go on your feet. You don’t have to pay attention to how you feel about getting up and finding them. Focus on how you know they’ll feel once they’re on. Think about that as you stand up and walk to the closet, okay?”

Tolerating the nastier bits of life involves an interesting mix of being present and knowing when to check out. Most people don’t differentiate between processing unpleasant emotions and carrying out unpleasant activities. They tend to use the same set of coping mechanisms – typically distraction and avoidance – to deal with both.

While judicious use of distraction can be quite helpful when processing feelings like grief and anger, there’s a strong tendency to overuse it. It’s effective when used to modulate how much you unpack at one time, but that presumes you are in fact allowing yourself to experience the emotions, albeit at a more manageable, less life-exploding pace.

Examining my feelings directly is actually one of my stronger abilities. It’s a different story when it comes to managing less-than-thrilling tasks.

What it has taken me years to learn is that distracting my brain is exactly what needs to happen in order for me to be effective at adulting. If I let myself think about how hard something is going to be or how much I don’t enjoy doing it, I end up paralyzed. My problem has been being too present with respect to my feelings.

This has been quite the challenge for me to figure out. Believe it or not, I have extraordinarily few examples of activities that are easy or pleasant.

Most things suck for me. Well before my health kamikazed, the non-linear scramble that is my ability to plan tasks managed to turn simple activities into overwhelming logistic nightmares.

Even things I theoretically enjoy, like sitting on the couch reading a book, can become miserable, because there are so many steps involved. Thinking about what books I have. Evaluating which of the fifteen or so currently in progress (not exaggerating; it’s probably more like twenty) I want to read most. Making a selection from two or more books that offer roughly equal levels of enjoyment. Figuring out how to make that choice. Trying to remember where the book I’ve settled on is located. Getting up to look for it. Going to the car if it’s not in my house. Putting on some measure of appropriate clothing to do that. (As a rule, I don’t leave the house in pajamas.)

It seems simple – simpler – written out like this, but this is a conscious, explicit process I have to go through for every single activity I consider doing. Nothing about it is automatic. And all of the intervening thoughts that happen along with it? Those make it exponentially more difficult. “Should I use the bathroom? Am I hungry? Oh hey, I’m out of socks; I should do laundry.”

And on and on. Do I follow any of these deer trails? How do I make that decision? Do I make it based on priority of each possible task? How do I assess that? What if multiple things are of equivalent priority?

You can see why thinking about doing a bit of reading can lead to me scrubbing the toilet wearing underpants and a single sock.

When I think about it, I’m really not surprised it took me this long to learn that checking out is often the best way for me to get things accomplished. Most advice about dealing with yourself centers around remaining present in your body and in your head, but that’s exactly where I am already. It’s so bloody noisy up there that I can’t elevate any one signal long enough for it to stick, never mind the ten or so I need to hear (in proper order, of course) to carry out any one activity to completion.

My solution is to turn it off. All of it. If I’ve determined it’s a thing that needs to happen, it doesn’t matter how I feel about it. It doesn’t matter if something else is of a higher priority. Decision made. Time to execute.

Now, as it’s highly unlikely I’ll remember the existence of this technique when I need it, I write it on Post-Its and stick them around my house. Sometimes those fall off, but I inevitably discover them when I find myself moving my couch to vacuum. (I was headed into the kitchen to make coffee, I swear.)

*For funsies, now add in the persistent pain my genetic disorder causes me and the soul-crushing fatigue that is my almost daily companion. Don’t develop chronic health problems, people, I’m telling you. It’s no fun. The extra experience points you gain in resiliency and perspective on life are not worth the sacrifice.

**If your version of hell involves grocery shopping, trips to the post office, and/or hearing some version of “It’s in that email I sent you,” we’d likely make good friends.

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