Collection of thoughts on pain

No one will ever love you the way you used to love yourself. 

How do you become okay with being someone else? How do you convince someone that living like this is unacceptable to you, especially when that someone is a doctor who has told you to stop looking for an answer. 

This can't be forever. 

I don't want this future if it is. 

Will anyone blame me for that? 

They don't see the emptiness this has created. That nothing can fill that emptiness except being able to do things I enjoy again.

I told her I didn't see the point of trying if I couldn't do what I wanted to do ever again.

She walked out of the room. 

I can accept that I may have some level of pain forever, no matter the underlying cause. But as long as I can participate in my own life and tell my story the way I want it to be told, I can live with it. But walking around like a zombie--being able to look but never join in--is something that I can't handle. That's why I avoid people. They're all living in a world I can't be a part of anymore, and that is too painful for me to handle. 

I know myself, and I know exactly how this evaluation with the pain psychologist is going to go--because that was more important than trying any treatment to actual relieve the immediate pain that has reverted me from doing pretty much anything for weeks now. Not even a strong NSAID. Six months without medicine, other than Advil. Anyway,  going to be told something along the lines that I need to practice radical acceptance, that I need to accept that doctors cannot help me and that I am responsible for dealing with this (at which point I will remind them of all that I DO Do to prevent things from escalating), etc. Maybe I will also then mention that you can accept your situation while still actively working toward finding an answer. That no one has actually taken an MRI of the area that hurts--in which an anatomical deformity has recently been identified on an x-Ray. That they are focusing on the disc herniation that completely healed, which was associated with completely different pain and a better-than-full recovery. That the pain I have now developed quite gradually and continues to worsen over time, which is quite uncharacteristic of "chronic pain" with no identifiable cause. That based on the most recent movement tests conducted last week, the pain is probably not originating from the area of the disc herniation at All. 

I could go on. I could cite study after study. It gets tiring when no one seems to listen. "So, it's a sharp, shooting pain, you said?" "No, I said it wasn't like that at all, more than once." 

Stop projecting your generic image of a patient with chronic pain onto me for fuck's sake. Your generic PT probabbly won't be helpful either, as I guarantee that even as fucked up as I am, I have pushed through and can do more than most healthy people ever will in their lives. I know what you see when you read my charts and look at me--though you never even bothered to get the medical records from West Virginia. 

I feel that this approach is going to turn me into the very thing they already think I am. And I wonder for how many people such severe, lifelong pain issues could have been prevented. 

This heaviness is becoming too much to handle. I don't feel like myself anymore. And I know myself well enough to know that I can't just replace or forget about the things that allow me to feel like me. 

When I truly did accept that this was forever--when I stopped trying to find an answer--i spent a lot of time researching assisted suicide organizations in other countries. Because without the things that make me me--which also enable me to function socially, mentally, and otherwise--I'm already dead. I've tried to replace these things. I worked fucking hard to do it. I'm not interested in becoming someone else or in being so non-functional that I need to be heavily medicated like before. 

So I guess I'm trudging forward for the time being. But there is always that part of my mind that wonders how much more I can take. If this all goes the wrong way, how do you tell your own mother that you don't want this life anymore? That the gift she gave you has become a curse? That you are no longer yourself and can never be again? Do you think she would blame you? 

I'm not okay. And today has made things so much worse. 

Mental Health Rant

I want to write about mental health, but now may not be the right time. After a seven-day stay in the hospital that most assuredly requires many angry letters to administrators of all sorts, I'm not feeling confident in the ability of this system to help me, though I may feel more confident in my own abilities. That tends to fluctuate, however. I hesitate to say more about this experience because I'm working on developing a letter that outlines how poor the state of UPMC's mental health care truly is, beginning with a scene I witnessed while waiting in the Emergency Department, in which a male doctor used admission as a threat--rather than a treatment option--for a female patient that did not want to submit to the strip search. (As soon as this doctor left, the patient cooperated completely.)

I will just say this. Treatment should not be a punishment. If you are using the treatment you provide in order to coerce someone into a certain behavior, what does that say about the treatment itself? Furthermore, using a patient's past history of mental health issues against them in order to justify an involuntary admission goes beyond just "unethical". Just because someone is angry and not cooperating with you does not mean that they are mentally unstable, and if you have not learned to adjust your approach to each patient, you should not be working in this field. Maybe I should have known even then. I have a number of other examples and thoughts, but I have a stressful few days ahead of me, and I may have to place these issues on the back burner until I can draft something more appropriate.

I think the most concerning aspect is that I consider myself to be relatively well equipped to handle my own issues (though this hasn't always been the case), but what happens to all those who are in need of intensive treatment and cannot advocate for themselves? My level of anger surrounding this issue has only increased over the past few years of receiving not just substandard but downright deplorable care. And being silent is no longer an option because, if this is what they call treatment, they should no longer be allowed to treat a single fucking patient. And I am going to make sure the right people know this, along with exactly what transpired over this last week.

My mind does keep turning over these thoughts, as the whole experience has been deeply unsettling, given that I'm not feeling much better than when I first arrived there. (To be clear, I'm not suicidal.) In some ways, I may feel worse. I'm trying to be more optimistic about the outpatient treatment, though that's proving difficult. I wish I could feel like I am not doing this all on my own. I wish I could work with someone who understands that not all aspects of DBT are helpful for someone like me--and that there's research to support that. IPSRT has been more helpful than anything, and I know this. My own research into helping myself has largely focused on that. I suppose it's not surprising that sticking to a set schedule and controlling your environment helps. I wanted to write something angry here about the conflicting diagnoses being tossed around by those working with me, if you want to call it that, and how the treatment can differ a great deal depending on which is accurate. But that should probably wait as well.

Aside from these negative experiences, it's difficult being back home--as it always tends to be--because I'm not sure what to do now or how to pick up where I left off. I'm supposed to have some kind of plan, but other than writing the answers they want to hear on a paper alone in my room, not much planning has taken place. That's the part that makes me feel defeated. How do I make sure this doesn't happen again? Gee, I'm so surprised that starting at a wall and coloring for 8 hours a day hasn't helped me figure this out.

But I have someone who is not only willing to support me in sticking to a routine, but who is actually willing to do IPSRT things with me. And that may be exactly what I need. The next few days will be rough, but I've decided to take the time for myself to ease back into the most difficult aspects of my life. I'm scared. I'm actually terrified of a lot of things, as most of you know. But this can't keep happening. I've been stuck in the same place for two years, for a variety of reasons, and I can't take it anymore. Something needs to change. And I need to be better about realizing when something isn't working.

Here's to trying again. And again.

Under Construction

My trans body is my palace, built up from the rubble I myself created out of necessity because my soul had outgrown the one chosen for me, perhaps before it ever entered this world.

The wisest people I knew told me that I’d both grow out of it and grow into it. So I unpacked.


I painted the walls, but I was told they were the wrong color.
I trimmed the garden, but I was told it was too short.
I solidified the foundation, but I was told it was too much.
Each exciting, uplifting renovation only further confirmed my home to be the eyesore of the neighborhood.
So I put up a fence.
I locked the door.
I turned out the lights.
I let the paint fade and the walls crumble.

And then one day,
I just didn’t come home.

It would be years before I could return—before I could force myself to look at the damage that had been done.
The decay and the vandalism and even the emptiness.
I didn’t even recognize it anymore.

I stared. And I cried. I tried to see the beauty I’d been told was always there. I must have sat there for ages, utterly still, tuning out the world around me in order to visualize that perfect home—the palace of my dreams.
And when I found it, there I stayed.

In my dreams. I closed my eyes and built this palace brick by brick. And the more I built in my dreams, the further the actual structure decayed. Pieces began to fall all around me. This home was no longer safe, but I could not yet open my eyes. I was afraid that I would never see it so beautiful again.

Then you found me sitting there, my back towards the world. You spoke as if you already knew me, but that was not the strangest thing. You asked me why I couldn’t move, and I was too afraid to tell you that I was afraid I wouldn’t see it anymore. So you stayed. We talked for what seemed an eternity. You weren’t afraid of the broken beams or the dirt or the bugs or the smell or the darkness. You would have waited forever.

At first, maybe it was curiosity that made me open my eyes and turn to you. Why aren’t you running away?

“Because it’s the most beautiful thing I’ve ever seen.”

You didn’t seem to see this dilapidated shack that had long since been abandoned. You didn’t see the overgrown lawn or the graffiti or the poison in the walls.

How?

“Because that’s not real.”

But it’s all I’ve ever had. It’s all I’ve ever known.

“That doesn’t make it real.”

And so it began.
Brick.
By.
Fucking.
Brick.

Pulse

I've hesitated to post the thoughts I've had until now because I haven't been able to figure out the most tactful way to say them at a time like this. But it's weighed heavily on me since shortly after I learned about what happened in Orlando. I have seen so many posts from cisgender gay people--predominantly men--whose lives may never be the same, who now must live in constant fear, even in spaces that are supposedly "safe". I do not intend to diminish anyone's suffering, but it is worth mentioning that this fear--the fear of always needing to be on guard, of needing to know how to protect yourself, of having to check on your brothers and sisters to make sure they are still alive, of hearing people hurl words at your community that make you wonder if you're next--is not new to trans people. 

The walls you feel compelled to build in light of this recent tragedy have been heavily fortified for trans people, who cannot even be safe in gay clubs where members of our own community now feel safe enough to hurl slurs and show us what they really think of trans and gender-non-confirming people, where we still wonder if being outed means dealing with ignorance in one of its many forms. But our fear, much as theirs does now, has extended to other spaces too. If you now feel scared to hold your partner's hand in public, to wear that tight pink shirt walking home at night, to go out for a drink this weekend, imagine that you have to feel that same or an even greater level of fear when you need to change in the locker room, when you are taken to a hospital, when someone gropes you in the club and finds something "missing", in the bathroom, when walking home and not passing, whenever you meet a new person, etc. Imagine feeling that every time you hear the news that another one of your trans brothers and sisters has been murdered or attacked. The safety you have lost has never been guaranteed to us. We begin to carry around the weight of all of this the moment we realize who we are. We have been screaming this whole time for our LGB brothers and sisters to understand the reality of this fear. We have been met with silence all along too, and we have become angry because of it. 

The pain of the past week or so is an amplification of the pain that has been and always will be a part of the trans experience, rather than a new development. I wish the understanding did not come at so high a cost, but I hope that some of you will recognize this, further understanding that the first of us to be targeted in the future will be those who fail to meet society's expectations of gender. 

We do not have to act, to hold hands, to be in a gay club, etc. We merely have to step outside our doors. I am not shaming you for the privilege you have had up to this point. In fact, I have envied it. I have longed for that kind of comfort in public spaces all my life. When you want to know why transphobic rhetoric hurts so much, why displays of ignorance provoke anger and panic, you now have your answer. I hope that this tragedy marks a point where we can begin to rebuild our spaces as truly safe and inclusive for all members of our community. You want that back. We've desperately needed it all along.

Pride

Even though I have some answers, they may not be answers at all, and the very worst is still a possibility. I hate everything about the way I look and feel these days, and I can't do anything I enjoy. I'm missing out on Pride. I've spent so much time just lying here doing nothing, and I hate every minute of it. But I can't function like this, so most things are off limits. I felt hopeful for a day or so. I guess that counts for something.

I don't know what to do. I wonder how few people who have stayed in my life have managed not to walk away. On top of everything, I feel like that is only a matter of time. It'll happen when they can't tolerate any more from me. It's almost happened so many times. I'm always afraid that next time, there won't be a next time. I have to struggle to hide everything even more knowing this. 

I've been trying to get myself out of this mental trap for so long. I get pretty close sometimes, but I know the only thing that will fix it to the point where I can function and be happy again will be getting rid of this pain and these limitations. If you think that's a stretch of that I can just learn to be happy without any of the things that give meaning to my life, then you don't know that much about me, it seems. 

I feel so different. The world feels different now that I am this way, like we aren't meant for one another. Nothing is comfortable, physically or otherwise. 

I'm having trouble saying it all. Sometimes familiar words and phrases are easier, even if they don't quite fit what's happening. 

Happy pride, everyone. This is what mine looks like. This is what my entire life looks like. And being strong is not easy anymore.

Pain Update: Answers!

It's been about 16 months since this pain began, and I finally have some answers, though I worry there still may be more to the issue, but I'm always the one to think the worst. For the past 3 months or so, the pain has been at its worst, and most days I can do no more than sit up in bed without wanting to scream in agony. (I say wanting because, if you know anything about chronic pain, you know that, after a while, you learn to stop screaming and suffer in silence: Your body adapts, but the pain doesn't necessarily lessen.)

Anyway, my fiance essentially had to drag me to the emergency room this time because, after my last hospital experience during which I was accused of seeking narcotics and sent home in pain with no hope of relief, I didn't want to put myself through anything like that again. However, since I couldn't lift myself or even turn over in bed, I figured it needed to happen.

After a horrible experience of being repeatedly outed by no fewer than 7 staff members--even though we told each one about the issue--the doctors decided to do something different. Now, I've been pointing to the same spot for the past 16 months and explaining exactly what the pain feels like and which positions are most agonizing, yet no one thought it would be a good idea to take an x-ray of that area. And I wanted to cry when I heard what they found.

I have a protuberance at the right anterior femoral head/neck junction that is causing femoral acetabular impingement, which actually could explain all of my symptoms. They also found mild degenerative changes in both SI joints and my pubic symphysis, though they don't believe the arthritis is severe enough to result in pain like this. But this news is a hell of a lot better than what I had been thinking.

I still need to follow-up with someone, but I'm no longer fumbling around in the dark hoping to stumble across an answer. Given that this has been going on for over a year, I worry that I will still need surgery to correct the issue, but 4 months or so of recovery from a minimally invasive procedure would be well worth it if i could actually enjoy my life again. Maybe by next pride I'll be able to go out and participate instead of watching videos from my bed.

I'm ready to be myself again. Here's hoping that, one year from now, I will again feel at home in my body--that it will no longer feel like a prison due to these limitations. Though I've learned a lot about pain and disability from this experience, I'm ready for it to be over, though that alone seems selfish, given that many people do not have that option. I have too many thoughts right now!

RuPaul Diatribe

A recent interview with RuPaul has once again filled me with rage. I have tried numerous times to give her the benefit of the doubt, but her "Real Talk" interview only confirmed what I feared to be true: that her callous, loathsome attitude and behavior only serve to further marginalize the most vulnerable members of our community. The most disturbing part of the entire interview is that her hypocrisy and prejudices are cleverly disguised by her ability to speak eloquently and at length. They are embedded amongst numerous other points that actually do have some validity. The most dangerous people in this world are those charismatic enough to twist the minds of others into believing even their most wretched thoughts--who use their charm to hypnotize the masses into surrendering their ability to critically analyze behavior, language, and situations.


Before I embark on this somewhat lengthy break-down of the most problematic assertions of the interview, I must offer the following bit of advice. Language, whether we want to admit it or not, IS important. It underlies and shapes all thoughts, attitudes, and behaviors. Language has the power to save lives, as well as the power to kill. As a linguist, it is hard for me to overstate the role of language in personal and societal development. There are multiple instances during this interview where RuPaul deflects questions and avoids lengthy discussion of topics that would fully expose her bigotry by asserting that language doesn't matter, and it's all about fun. She even goes so far as to say that being hurt by language is stupid and only further reinforces "trigger-happy" people's perceptions of their own victimhood. Because, you know, if a rape survivor can't laugh about being raped, then they are automatically inferior to me and undeserving of my respect or validation. Dismissal of the idea that respecting others, particularly those who have been through the trauma of fighting for their lives as transphobic slurs are hurled at them, is not advocating for your community. It is erasing the identities and lived experiences of the people that literally gave you the right to be the person you are today and to have a mainstream television show.


Ru further goes on to dismiss questions about the relationship between trans identities and drag. She calls the question "boring" and becomes defensive when the interviewer asserts that it's a bit more complicated than that. Her language becomes decidedly "us versus them" as she insinuates that people who take their identities seriously are "dumb as fuck". The further proves how out of touch with reality this queen can be. Listen, when all you have in this world is your identity because you have been denied access to equal housing, employment, medical care, and basic services based on that identity, any attempt to erase it or take it from you will have you fighting for your very life. Even more simply, we are MURDERED because of our identities, so yeah, we do kind of take that seriously. And does she not remember the trans queens that came out during the production of her show? Her assertions further erase the idea that an entertainer in the drag industry can also be trans, leading to a more beautifully complex intersection of identities that are equally legitimate.


It only gets more absurd as Ru's hypocrisy comes out. She continually reasserts the idea that she can float between femme and butch, yet she only frames this in the context of drag, somehow forgetting the lived experiences of genderqueer people. One wonders if these people would be allowed on her show, and, if they were, what does that say about her attitudes toward exclusively feminine-presenting and -identified trans individuals?


She further has the audacity to say that drag is supposed to be the antithesis of mainstream, with the goals of continually pushing boundaries and blurring lines, yet her television show and previous responses to questioning by entertainers who do not identify as cisgender males do nothing but reinforce boundaries within our own community and draw quite clear lines on what she believe qualifies as drag or worthy of the spotlight. Of course, this is television, and producers have every right to do whatever the hell they please, but rather than claim exclusivity on the basis of personal preference, Ru has continued to assert that other forms of drag are either not really drag or somehow less valid than others. I have mentioned this before, but my definition of drag is as follows: the deliberate deconstruction and reconstruction of gender. I don't think you can get more inclusive than that, and you sure as hell don't have to shit on anyone's identity or lived experience in using it. But my very identity is what will make my remarks less valid in this world.


If you only believe and pay attention to the words of those with the loudest, most accessible voices, you are missing the majority of the conversation. Ru is a celebrity who has done some wonderful things, but it has become quite clear that she is out of touch with the queer community. However, for some reason, the dominant, white cis gay male culture loves to eat up the shit that she spews out of her mouth sometimes, and problematic, oppressive, and downright violent discourse is perpetuated. Do you know what would be awesome? If queens (and even other entertainers) could stop bowing down to this bitch as if she were a deity and start thinking for themselves about what's best for the people our community so often enjoys throwing under the bus.


I think I've stopped shaking now. But am I done? I'll be done when the work is done. Until then, I fight for those whose voices are silenced, whose lives are erased, sometimes quite literally. And I will not apologize for that. I love you all, and goodnight.