Hard NO on gabapentin ever again. **Trigger warning – self-harm thoughts**

I really need to remember (and underscore) that psych meds and I really don’t play well together.

I’ve noticed, and been able to label, psychotic thoughts getting stronger with each dose… The biggest “aha” moment came tonight after my evening dose (#3 in total) when I scratched an itch on my scalp, and thought “I should just rip it off”, and I pictured myself ripping off a large chunk of my scalp to relieve the itch. That is not a normal thought!

I may be experiencing psychotic thoughts, but I’m aware enough to recognize them as such.

After figuring that out, I did a quick Google search; apparently, psychotic agitation is a “rare” paradoxical effect of gabapentin…

References on this phenomenon:

• A “letter to the editor“
• From the NIH
• From the Canadian Psychiatric Association
• Another case study

There’s more out there, but I’m having trouble concentrating… My tongue is very present at the moment, and it’s flashing up a thought to “just chew it off to stop it from feeling that way”… Seriously not fun right now…

I feel like I might cry and laugh maniacally at the same time… My emotions are all over the place, mostly hypomanic & psychotic. I know I need to turn over and try to sleep, I just need to stop being scared of the thoughts. They are just thought. I don’t need to act on them. They will pass. I just need to let myself sleep…

Endings suck…

…Even stupid, meaningless ones that shouldn’t suck as much as they do.

Like tv shows that let you escape yourself.

And fictional characters dying.

Because they tug at the old hurt of all the losses that came before, and were actually meaningful…

It compounds when more than one loss is piled on at the same time. Then suddenly everything else comes flooding back, and it sucks…

The stupid, meaningless losses take on all the hurt and emptiness the previous ones left you with…

At least Lucifer wrapped up the series well, almost as if they were planning on ending it this season. They could take it further, but this is a good stopping point. They gave is the closures we needed to be able to walk away from the show satisfied.

Scorpion, not so neatly wrapped…

Totally left without closure; Chris passing away Monday. She had gotten through so many health issues over the years, ones that were true miracles she recovered as well as she did… I guess her body finally gave out. I’m not even sure if it was the cardiac issues, the kidney issues, the cancer, or something else that finally took her. Before this week, she had beaten cancer, recovered from kidney failure, and was recovering from bypass surgery… she and L were friends for a quarter century (give or take a year or two). I had only met her after I stated dating L, but she was an amazing person. She is greatly missed.

… Then the older stuff picks up; L’s dad, Chow, ButtButt, K & T, Floppers, Twigs, Tigger, Dizzy, Sugar Cane, Almond Joy… De, Chrispy, LKB… All the endings that were sudden, painful, and unresolved.

It all gets rolled into a giant ball that feels choking and overwhelming.

This time of year seems to hold a disproportionate amount of those losses…

And then there’s July 7th (the anniversary of K’s death, and almost 14 years later, my first suicide attempt… there were only ever 2 thought-out attempts where it was a conscious choice. Anything else resembling one was an impulsive, desperate attempt to find some peace, but not necessarily an attempt at ending my life… I blame it on the meds. I’ve never done anything like that when I wasn’t spiraling out of control on psych meds. Even when I was ridiculously depressed, I never gave in to the impulse when not on psychotropics. They work wonders for some people, but I am not one of them)…

Back to the original point of this post: grief sucks. Losses suck. Especially when the biggest, earliest ones were never resolved…

On using psych meds

… that Sarah Silverman tweet got me thinking…

There’s so much info and support out there for people taking meds, but nothing for people who react badly to meds.

I’m not sure I ever really talked in detail about my struggles with psych meds.

I tried them briefly in college, but came off of them after a short time (can’t remember why, or how long I was actually on them). Then, 4-6 years later, I was convinced to try them again. It was against my better judgement, but my therapist at the time was adamant that I needed them. I wanted to trust that she had a less biased view of things than I did, and that she was more knowledgeable about it all than I was. I battled her about it for several sessions before I caved and agreed to try them once again.

I had trouble finding a psychiatrist I felt comfortable working with. I must have cycled through 5 or 6 before I found one who I felt listened & cared (read: didn’t try to push the same meds I reported as having not worked when I tried them; wasn’t cold or condescending; sat with me for more than 3 minutes before handing me a prescription). Sadly, she moved out of state after about 3 months, and my search began again.

I really don’t remember much of the details at this moment, but I do know at one point I was taking roughly 15 different meds up to 4 times a day. It started with one med, then another med to combat side effects, and another to augment the first, then another to help with side effects from the one helping with the original side effects, and so on.

The meds didn’t work for me. I kept getting more depressed, more anxious, and more suicidal. I cycled in and out of hospitals. Each time, they added meds, or switched them out, or increased doses, or all of the above. None seemed to help.

They started blaming me for complaining about the side effects. I was called willful and resistant to treatment. I was told I was being manipulative; that I didn’t actually want to be helped; that I was enjoying the depression; that I was not trying hard enough to get better. I was told I would never be able to live without medication; that I needed to accept it as a part of life… at one point, doctors told me that I would never be able to survive on my own because of my level of self-sabotage.

I was seriouslly depressed, constantly anxious, extremely impulsive, and actively suicidal 90% of the time, not to mention my mounting ptsd symptoms (an enormous difference from my demeanor when not on meds, but few people had seen me prior to starting them by this point. Even I was mostly convinced that I would certainly die without meds (which was honestly part of what prompted me wanting to stop them. At least if I managed to kill myself, the pain would end)).

During one of my last dozen hospitalizations, it was strongly suggested that I not be released back to my home, but rather permanently be sent to a residential facility, as I was an inherent danger to myself. The doctors were shocked that I had survived this long. Even less believable to them was that I had a successful life and career prior to my most recent hospitalizations. I had held down a full-time supervisory position, as well as 3 other part-time jobs up until that final year on meds. I would be hospitalized one week, then return to work as soon as I was released. I attended intensive therapy programs during first shift hours, and worked in the afternoons. I taught trauma informed care workshops. I attended professional trainings. I was very high functioning professionally even as I was crashing personally…

I was lucky enough to have family and friends on my side backing my insistence to receive more intensive treatment (mind you, this was 4 years after I started meds, and roughly 40 hospitalizations in by that time). I knew I was metaphorically drowning. I knew the treatment I was getting wasn’t sufficient (most psych units, even in psych hospitals, don’t offer therapy so much as physical containment), but I did not totally know what might actually help. Dr C was a great resource. She helped me figure out that a specialized trauma program would likely be beneficial. She’d also advocated strongly with the doctors at the local hospital to send me to a more intensive program. Between her, my family, and my own insistence, I was finally admitted to a trauma clinic, The Center at PIW.

There, I finally found some meaningful & intensive help. Despite reading my recent history, the psychiatrist agreed to help me come off all the meds. By the time I left there 2 weeks later, I had tapered off most of the meds. Those last ones I was able to come off of with the help of the psychiatrist at the day program I attended following my discharge from The Center.

The first day back to the IOP, the staff commented that I was doing the best they had seen since I first attended there 4 years ago. They said I seemed clear-headed, articulate, calmer… they asked what changed. When I mentioned I was tapering off the last 2 meds, they seemed incredulous. After all, how could the person who was so debilitated for so long be better not taking the thing they believed was her biggest hope at normalcy? Initially, the psychiatrist was ready to refuse treatment because I was refusing to take medication again, but upon seeing how differently I presented, I was allowed to stay in the program. I was, however, requested not to mention that I was no longer taking any regular psych meds. They claimed it was to avoid compliance problems with other patients in the program. I guess I was seen as an oddity.

After my shortest time “completing” the program (3 weeks or so), I was deemed stable enough to graduate. I returned to only doing individual therapy & the trauma group with Dr C.

Since that time (2011), I’ve only tried psych meds 3 times. Each time I noticed the impulsive drive to kill myself return in less than a week’s time. They faded just as quickly once I stopped taking the pills. The depression still hits hard, but suicide is no longer my first and only thought on how to deal with it. I’m also better able to avoid cutting (actually, I rarely think about using it as a coping tool these days).

Doctors still react with shock and disbelief when I deny being on psych meds despite my diagnoses. I’m pretty sure most believe I’m lying when I tell them I only take something for asthma and stomach issues. Even the neurologist did a side-eye when I mentioned the only 2 meds I take aside of the pot.

In a society where pharmaceuticals run the medical industry, and they are the be-all & end-all of mental health treatment, not taking meds is seen as going against medical advice. Hell, we take away people’s basic human rights when they say meds don’t work so they’d rather not take any. They are deemed an immenant danger to themselves, and not competent enough to make rational decisions… all because something we are indoctrinated into thinking is the only way to treat mental health issues harms some people more than it will ever help them.

I can’t tell you how much I loathe the phrases “you just need to find the right meds or combinations),” and “the benefits outweigh the side effects.” Sometimes there is no right combination, and the benefits definitely do not outweigh the side effects (because for some, there are no benefits). I wish medicine understood this…

Maybe we need to start another movement; that sometimes meds do more harm than good, and there’s nothing wrong with choosing not to take them. There are several notations in my records that insist I’ll die within 6 months max if I were allowed to stop all psych meds, yet here I am, 7 years later, more stable than I ever was on the meds. Oh, and check it out, I’m still alive! Who knew that was possible?! 🤔

It’s time we stop forcing everyone with mental health challenges into a medication routine. They can definitely be helpful for some, but we also need to acknowledge that they can be detrimental to others.

weirdest flashback yet (TRIGGER for talk of suicide)

ok, so I’m calling it a flashback because it came in super-intense, lasted a few seconds (though felt like forever), then completely faded leaving a hollow echo…

so yeah, had my weirdest flashback yet; I was suddenly overwhelmed with the thought/urge/almost action to kill myself. Specifically, it very much echoed my first (and most serious deliberate) attempt.

I am not currently suicidal. I have not felt that way in quite a while, except for around 5:20pm tonight. It came out of nowhere, hit hard, and dissolved into nothingness. I was aware of it as something that “didn’t fit” with the rest of my current reality. I had a quick dialogue with myself in the background of the overwhelming feelings. I was aware that I was having a dialogue and that this other overwhelmingness was playing over that.

It took me a while to label it as a flashback though.

I knew it was “wrong” in intensity for my general mood lately. I knew it came on very hard and seemingly un-provoked, but I didn’t identify it as that first attempt until finally talking it through with a crisis chat (everyone else I would have contacted or tried to contact to talk it through was unavailable). In the back of my head, I’ve been wondering if today was the true anniversary of that first attempt because I saw a fb “memory” that hinted at it. The time of day would have been about right for that attempt. The line of thinking that was intruding would have also been accurate for that attempt… and it completely left as fast as it came on, so I’m gonna call it a flashback.

That was super-disturbing. I wonder what part of me was scared so much by something to throw that out at me for the first time in a long time? And I kinda wonder if all those times I was dealing with “impulsiveness” was really just a flashback that I couldn’t label as one yet. I did manage to traumatize myself pretty badly (and many others) with that attempt. I distinctly remember being terrified of doing it, but also feeling like I had no choice anymore because I had made the decision within myself, and needed to honor that decision… I kinda bullied myself into it right before; I was both the abuser and the one being abused…

Anyway, so… yeah. Weirdest flashback yet, but really glad I was able to identify it as one. Now, back to the general “meh” feeling of having my emotions jumbled due to hormonal fluctuations.

thoughts and ramblings… (apologies for this wall of text)

I had my usual appointment with TM today. I struggled to explain to her what was different about this weekend. She asked what the motivators were for my change in attitude. I couldn’t put my finger on the tiny “half-spark” of internal motivation for the change, but I also could not adequately describe the difference in external motivators either. At one point, I tried to explain that I disliked being a cause for concern. I don’t think I explained the “why” behind that very well though… Just now, reading through an older post from another blog I follow, I found a wonderfully concise and accurate description:

“I have always reacted badly to emotionally affecting other people; it’s like I should exist as a neutral entity. Especially when it comes to people who matter to me.” (0sername blogged about it in this post from last year)…

I’ll have to try to remember this the next time I see TM.

Anyway, we talked about the weekend, and she challenged me to find what it was that allowed for that tiny bit of internal push to change how things turn out. I kinda thought about it already while running errands on the way home… I don’t think she will like the answer (though maybe she will be able to put a positive spin on it): Since I don’t have a fool-proof, guaranteed-to-work method to kill myself, I might as well work to make the interim as pleasant and productive as possible. If I’m in crisis and falling apart at the slightest sign of stress, I will certainly not be making the most of this time I’m “stuck” here. I will also never progress past the initial “dump” of info in therapy. I need to be able to get past this point.

To that end, TM pointed out what should have been obvious to me but wasn’t: I’m still pretty depressed. We talked about what my barriers are to accomplishing even the simplest things. I had reported to her Friday that I had tried several times between Tuesday and Friday  to go to the beach without any success. She wanted specifics around what had me turning around. I explained that it should have been easy enough for me to go, since I always have a “beach bag” in the car (shirt, shorts, blanket, towel, bathing suit). I could simply head out and either change when I got there, or go in jeans and change into dry shorts after. But I would get stuck on all the steps needed to make it to the beach. Sometimes I would start to go, get much of the way there, then turn around because the remaining effort was just too much. The slightest hinderance to making the full journey (which is really only about 6 miles or less, and maybe takes 20 minutes) had me losing my resolve to go. It became overwhelming to think of having to make all those turns, go through all those lights, find parking, gather my stuff, walk “all the way out” to the water, find a spot to consider “mine” or walk along the shore… And if I decided to go in the water, I would have to make sure my stuff didn’t blow away, and my valuables were safely hidden, and battle the waves to get to a point where I can just chill… It was so much easier to just turn around and go home. (I also described my thought process around going to the mall several weeks ago to exchange my bra. She was surprised at how far I broke it down, and admitted that having to think about doing all that would exhaust her also). She agreed that my miles-long list of “steps to get there” could seem to out-weigh the single acknowledged gain. This was where she pointed out “what [I] probably already know, but…” that’s all depression talking. I sometimes forget that depression can also manifest as a lack of energy or enjoyment from things. I’m so used to it being a horrid, hopeless, lifeless mood that as soon as the mood lifts a bit, I don’t see the depression anymore. I think the universe has been trying to bring this to my attention of late. Not only has TM now pointed it out, but I had followed a few forum posts where it was suggested that the poster still was experiencing depression despite the lack of depressed mood. It was more of a behavioral presentation. If I take an honest look at myself lately, I have to admit I’m still obviously depressed. Not only do I find it incredibly difficult to motivate around anything or take enjoyment out of what used to be enjoyable activities, but I also actively battle a higher intensity of “self-destruct” thoughts than would be considered my baseline… So much for moving past the depression. :sigh:

Anyway, she left me with cognitively challenging homework this week (a good balance to the emotionally challenging timeline from last week). I’m supposed to document (timeline or otherwise) some happy/good events in life. I laughed at her and said it would probably all fit on a post-it, compared to the large piece of brown paper I brought the other timeline in on. We laughed, then commiserated on the salience of negative or traumatic memories as opposed to positive/happy ones. I pointed out that we probably wouldn’t have gotten very far in the history of humanity if we forgot tigers might rip our arms off when we tried to cuddle them in the forest. She laughed at that. I like that we have a similar sense of humor, and our thought-process is somewhat similar. I again almost asked her if I could take her with me when I moved…

The other piece of homework was more of a reflective exercise: to figure out what happened to give me that internally motivated little half-spark of hope that helped me get through the weekend. That is so much more challenging. I can easily figure out the external motivators: L, the animals, not wanting to wind up in the hospital, not liking the feeling of causing others to worry or be concerned… easy-peasy. Internal factors though? maybe the discomfort with causing worry? (because it has changed somehow from not feeling worthy or deserving of worry, to disliking the feeling I get within myself when others say they are worried. I know I’m not describing that well, but…). So yeah, I dunno. This one may take me forever to accomplish.

On another note, though TM offered the possibility of a scheduled phone check-in, we ended with leaving it up in the air. I told her I really wanted to prove to myself that I can be self-sufficient (because I used to know how to do that at one time). She made it a point to say that neither calling nor not calling her would mean a failure of any kind. I’m glad she has been listening to all my fears, lol. While I still am seeing calling her as a failure, I will keep playing her statement over and over again in my head. Regardless what happens this week around seeking support, I will not have failed… (some day, I might believe that).

 

interesting concept as a middle-ground for suicide prevention

saw this article via fb. I think it’s an interesting concept, though I am hesitant on the heavy focus on peer-counseling. While I think it can be an amazing thing, I personally am more comfortable with a clinically trained therapist or crisis worker. Regardless, I think this is a great idea and a good step in the right direction.

The “Living Room” model of crisis intervention.

What do you all think?

site on suicide prevention, support, and treatment resources

someone pointed me to this site. it’s really good. check it out. Speaking of Suicide

it has resources for suicidal people, friends, family, treatment providers… all around good info. (I will also list it under my “resources” page so it’s always relatively easily available).

New art journal pages

After almost 2 weeks of nothing artistic happening, I worked on 2 pages. There’s been a lot going on that I am not comfortable expressing directly (though it needs addressing. Maybe with the next therapist?), but it’s finding its way into the art, even if no one knows it but me…

This page was started while I was visiting L last weekend. I was stalled on the dog image transfer. Finally figured it out tonight. “Safety Measures”… whatever it takes to keep breathing, because monsters are real.

 

And this one was started yesterday. “(don’t) Remember Me”… not sure how I feel about the visual balance of this one, but going to call it “mostly done” (for now) until I decide what else needs to happen to it.

RIP Robin Williams

I can’t tell you how this makes me feel, because I don’t totally know.  On the one hand, I am saddened by the loss of such a talented soul. On the other hand, I am happy he is finally at peace…

He was my all-time favorite comedian… 😦

Having sat with the information for a bit, I have come to the conclusion that I am not sad.  I feel relief for him.  I will miss is talent, but I am not sad for him, I am sad for others who are saddened by the loss… I truly believe every human being has the right to decide when they exit this life, whether we agree with their reasoning or not.  This belief comes about from my own experiences in life…

I was talking to L earlier about this.  She brought up that it goes against the general christian belief system (in which both of us were raised, but neither of us really follow much) to take one’s own life; only “god” can decide when we go.  My counter point to that was; “what if “god” has decided that this is the way we go?”…

None of us knows for certain what happens after the death of the physical body.  We speculate and theorize and believe, but no one knows for sure… So what if this so-called god decided it was time for us to go, and the method of our departure was suicide… Would that change the way we look at it? We reason away everything else, why not this?

This particular news of a suicide affects me deeply, but not for the reasons one would think. I have been struggling again with my own suicidal thinking. I have seen official mention of my hopelessness for recovery… I have to admit I’m jealous of Robin Williams… He has accomplished what I wish for, he has moved on from the pain of this life, he’s broken out of the cycle… I wish I knew how.

today is a new day

I ended up at the beach last night.  It was nice.  I will really miss the beach after the move (it’s a mere 20 minutes from here, but will be about an hour from where we will be living… and there will be no palm trees or wading in the winter months).  I really needed the time away.  I needed to think and drown in my music.

I can’t remember which blog turned me on to Angel Haze, but I am in love.  She’s inspirational, positive, and kicks ass.  I can’t pick a favorite song because I like almost all of them.  Dirty Gold is my current obsession, but there’s also Battle Cry (ft. Sia), Angels and Airwaves, A Tribe Called Red, Same Love (remake)… and ok, just about all of them…

I have been fighting strong self-harm urges since the TSA line back up north.  I guess it’s a good thing they no longer allow sharps in the airport because I would have shredded my arm and leg in the airport bathroom before boarding, they were that intense (and I had that little resolve at the moment).  Music has been my centering tool.  I have not picked my art up again yet, but the iPod is glued to my side, with earbuds wedged into at least one ear.  If I don’t have my iPod on, I am playing music through the computer or my phone.  I am sure I will run through the gamut of coping skills in my repertoire before De returns from vacation.  This weekend is a long weekend and most people already have plans.  M and I will be spending more quality time together. It’s not a bad thing, but we have forgotten how to interact. We don’t have simple casual conversations, it’s only ever stuff that lights one of us on fire (if not both).  I wish I remembered how to talk to her.  I wish I knew how to rekindle that close relationship we had back in the day (or at least I think we had).  We are both lost in our own drama.  When we meet, we tend to collide because the spinning arms of the drama hit before we meet causing sparks to fly and fires to light.

I volunteered for a research project on reporting sexual violence.  I’m not 100% sure what they are looking into, but I believe De had said they are looking into how to improve the reporting experience, and what causes barriers to reporting.  I was supposed to meet the lady tomorrow at De’s office, but they will be closing early for the long weekend.  The lady will be coming here later on this afternoon.  I hope the dogs don’t maul her while trying to get her attention (they LOVE people SO MUCH they are not quite sure how to contain themselves. I also suck at keeping up with their training, and they don’t get out as much down here. They do better when they have seen other humans recently).  The questionnaire should take no longer than 15 minutes she says, so it shouldn’t be too painful.  I don’t think it will be too triggering either, so it should be well worth the money I get from it… I miss research opportunities.  While I was never a fan of writing the papers, I did enjoy coming up with the ideas for the papers.  I love expanding the knowledge base on things that we don’t quite know too much about.  I love education, and helping people understand things.  I wish someone would do more research on the after-effects of sexual violence.  There’s so much anecdotal stuff out there, but so little “official” understanding of a lot of it.  I recently found a blog entry on a topic I have never really seen discussed in print.  I know I have been told that it is not uncommon for assault/abuse survivors, but I had not seen anything even remotely close to educational about it anywhere before.  It is also one of the few places to write about it as a function of coping with the abuse vs a pathology simply deemed psychotic.  I wish medical professionals had access to that information.  I think I may have gotten some more effective treatment earlier on had the doctors seen it as something that makes sense in the context of my trauma.  I’m fighting with the thought of posting a link to it here because I don’t think it’s something I’m ready to admit to anyone outside of a few select people.  I know it would have helped me immensely seeing it before now. It helps ease some of the shame to know (other than just hear one or two professionals tell me it is not uncommon and it makes sense) that others struggle with it.  I was surprised to see the number of comments on that post (well over 200?!) from people all struggling with it in one form or another. I’m just not ready to go public with that aspect of my struggle. I guess I could post a link to the blog itself, and let you wade through the posts to find the one I’m talking about… I just… I can’t say it right now. Not yet.  It’s still something I’m working on with De (and eventually with whomever I see up north)… Anyway, the blog is called Blooming Lotus. She has not written recently, but there’s a ton of good stuff on there (at least stuff that can help you feel less alone).  I hope, if you struggle with anything she speaks about, you will find some peace in knowing that it really is something others struggle with… and that’s coming from people who know it first-hand, not just through trainings or clients…

On a totally random note (random because I’m not 100% sure what train of thought led to this) but how can you hold two completely opposite and contradictory ideas as true at one time?  I know DBT covers some of this, but I am allergic to DBT, so I don’t really remember the concept behind the “dialectics”.  I’m talking about such opposing ideas that they should not be able to be held as true at the same time because they virtually cancel each other out.  If I tweak one idea, it’s a little easier to understand how I can hold them both true and correct at the same time, but they are not tweaked, nor do I wish to tweak them.  One is the concept of  “never, ever give up.” The other is the right to “bow out” as each individual sees fit.  Suicide is seen as giving up, so how can I hold that sentiment with the belief that everyone has a right to give up if they choose to do so? How can I advocate for life at any cost in one breath, and the freedom of choice to end your own life in the next?  I am not currently suicidal, though the freedom to have that “escape route” is calming to me.  I hold at once the obligation to fight any and all demons, and the option to give in to the desire for peace and an ending.  How is that even possible?  Maybe it’s that I understand the pain on both sides.  I have felt the desperate need for relief, and I have felt the devastating black hole born of the death of someone I care for deeply.  I grew up with the women in my family (and possibly even the men, but I don’t remember that as explicitly) lamenting about death being around the corner.  My grandmother said that she would die soon (should die soon, needed to die soon) since before I was born.  My mom would always say she wanted the right to kill herself should she ever be incapacitated (she wanted to make sure we all understood and agreed with her right to choose to end her life if she could no longer live it the way she was used to living, be it physical or mental).  I think I recall my father saying similar things.  No one ever expected to “get old”, yet the only person who did not speak regularly of death died at a young age.  My grandmother was 94.  Both my parents are still alive (despite saying neither of them wished to reach the age they are currently).  Bitch is still alive in her late 70’s (all of us wish she wasn’t).  But K is gone, and has been for 20 years this year.  She was 52 when she died, but she was the only one who wanted to grow old… I was indoctrinated to believe that every human has the right to decide to end their own lives.  But I’ve also felt the loss, and had the training that ingrained in me the instinct to preserve the life of others (and maybe even my own)… so I hold those opposing truths at once. Sometimes it’s a mind-fuck.

pass almost 2 hours: The lady for the research study came and it took me an hour and a half to complete the survey.  Her computer was slow, but I also think I kinda spaced on some of it.  it was only supposed to take 15-30 minutes.  Clearly, I did not fit that time frame.  It was ok.  I thought it would ask more about any history, but most of the questions revolved around the last 12 months.  I remembered an incident I had not thought anything of because of where it happened and the circumstances surrounding it.  It was during a hospitalization last year. It happened on a locked unit, by another patient, and in front of staff.  It wasn’t anything major, he was having a psychotic episode (or so they said) and tried to grope me after another patient mentioned that I was a lesbian.  I pulled away. I was able to re-direct him in no uncertain terms, and staff told him to stay away from me (and really everyone).  Despite the fact that I was in there due to my PTSD reactions over past assaults, I was never spoken to about the incident, no one asked if I was ok.  I simply stayed out of the common areas for a while, and later had some really bad body memories that ended in an uncomfortable verbal incident with another staff member.  The thing is, you lose all rights when you are hospitalized for psych issues.  You lose your personhood. You become a thing without feelings, needs, or any control over anything.  They treat you like prisoners (though I tend to think prisoners may be better off in some respects).  If you don’t do what you are told, you are lectured and called “defiant”.  Things slide that would never slide outside those locked doors. People (other patients as well as staff) can treat you like crap, violate all sorts of boundaries, order you to do things, and you just have to accept it.  You have no rights, you have no decision-making capabilities, and anything you say is clearly an exaggeration due to your mental instability.  I was expected to have no real reaction to this man invading my space and trying to invade my body because he was a patient and so was I.  It’s counter-intuitive that a patient’s reactions and feelings are not taken into account on a psych unit, but it’s true way too often.  The minute you step foot onto that floor, you are no longer a functioning, reasonable human being who is simply having a difficult time, you are a crazy person that needs containment (even if you are there for depression or anxiety). With or without a psychotic diagnosis, you are treated as if you are actively psychotic.  At least, that is how the hospitals in this state are.  Up north, I felt a bit more human, a bit more sane.

Anyway, I digress… the survey took longer than I had expected, but I did get paid, so that’s good.

hmm….

many interpretations…

Loss and thoughts on life, death, suffering and potential (mom & L, please don’t read this…)

Breaking the Silence of Stigma: In Memory of Kaitlyn.

I read the above with mixed emotions.  Loss has come up a lot lately in various forms, and I struggle to make sense of it all…

I had been thinking of Talia Castellano a lot lately, and the news of her death hit me hard yesterday.  I did not know her personally, but I followed her instagram, and wished her strength in her battle with cancer.  But these last few weeks, as she did not post anything because she was so sick in the hospital, I began to think that I wished it was me. I wished that I could give this bright and shinning little girl the energy in my body that was tethering me to this life.  Surely she would make more of it than I ever could.  If I could take on whatever it was that was killing her, if I could switch my life-force with hers, I would have done it.  It was all for selfish reasons though.  Well, not totally, but pretty much so.  I think her impact on the world in her brief 13 years had been greater than my entire 34… She had known suffering and pain, but she would have done better with her life-lessons than I ever could.

Is it wrong of me to be jealous? Probably. Will I ever get over that jealousy? Maybe…

I read the above letter with similar jealousy.  Yes, there is empathy and that gut-reaction of wishing her life was spared and her pain erased so she could live the rest of it happily, but there was also recognition and acceptance of Kaitlyn’s decision to step out of her role and move on.  While I feel for her family and friends, I also greatly empathize with her hopelessness.  I know what it’s like to be so far down there is no longer a light.  I know the crushing weight of depression.  I know what it’s like to long for death because at least it would bring peace.

I also know the guilt for the sadness my death would bring.  I know what it’s like to lose someone you love way before you are ready (are you ever ready?).  I know that lives are shattered and people are shattered by the death of a loved one… but that brings me little comfort when my own thoughts are focused in on any escape.

This understanding puts me in a sticky ethical and philosophical spot when debating the merits of death and suicide.  Why is it ok for a cancer patient to be over-taken by their disease and pass away, but not a depressed patient?  Why can people with terminal physical ailments choose to sign a Do Not Resuscitate order, but not a person with PTSD?  How do we draw the line?  Yes, a person’s body may be so far gone that living is painful, but what about when a person’s mind is so far gone that they experience the same pain?  Why is it ok to send a terminally physically ill patient into hospice care, but not a terminally mentally ill patient?  Just because we can’t pinpoint the mechanisms of failure in mental illness does not mean that they are not there.  This is a morally slippery slope.  I’m pretty sure I will catch hell for writing this, but think about it.  Remove your stereotypes and prejudices for a moment… Yes, there can be treatment for mental illness, but it doesn’t always work. There are some cases that are just too far along, some pain that is just too great, and it is beyond our capacity as humans at this juncture to know how to fix it.  So why is there such a push to then strip away that person’s rights, confine them against their will, and treat them with every last ditch effort we can think of, even if they don’t wish for the treatment?  Why do we not do this to cancer patients?  Why do we not do this to physically ill people?  Because we give them the benefit of the doubt that they are “of sound mind” to make their own treatment decisions.  We accept that if they choose not to go through with a particular treatment for whatever reason, they know what they are talking about…

When I was in the hospital the last time up North, my attending psychiatrist attempted to convince me to try ECT.  Having quite a bit of training in mental health, I have a reasonable understanding of that particular “treatment”.  I know enough about it, and doctor’s lack of knowledge about it, to know that it is something I will NEVER subject myself to (much like I would never choose a lobotomy, no matter how bad I get).  So why was it then, despite my knowledge and rational thinking behind my decision, that Dr. Fucker decided I was wrong, incapable of making decisions for myself, and that this treatment must be forced upon me?  Why did it suddenly become my job to provide scientific refutes for the use of ECT in PTSD cases?  I had no access to the internet, a library, or any articles on the topic.  How was it that I was supposed to show him that his line of pressuring was wrong?  When I asked for scientific proof, or even just an article, on the benefits of ECT with addictions and PTSD, he told me it was not his responsibility to provide it?  Where was the rational thought behind the response “but you are going to kill yourself if you don’t do it!” And how is it rational that I need to access this information while in the hospital, though I have no actual resources available to me?  He simply told me to “figure it out”… I had told him there were other options I was willing to try.  I had told him of different treatment centers and therapies still available, I just had to find a place to access them.  He refused to listen, and we engaged in a week long battle of wills.  Thankfully, according to CT law, I needed to have 3 independent psychiatrists agree that I was incompetent to make my own decisions before he could bring me in front of a judge.  He did try though.  I was visited my his friends (fellow psychiatrists that worked with him) several times while waiting for the independent interviews.  I was bullied and made to cry.  I was threatened with sedatives that would render me incapacitated so I could no longer resist.  I was yelled at and cornered and they tried all sorts of messed-up logic to get me to agree.  I think they may have even called my family at one point, but I am not sure.  They would have said no as well in any case.  They respected my decision, and equally felt that ECT is scary and barbaric.  I also had a few allies on the unit; nurses and mental health professionals who agreed that I should not be forced into it if I did not want it.  That’s not to say that they did not have conversations with me about it, and try to tell me the benefits they saw come from it, but they did not harass me like Dr. Fucker did.  My case worker was awesome, she told him a few times (in my presence) that she thought ECT was wrong for my case.  She dug around until she found a treatment center willing to take me, and that she hoped would be of help. Also, the additional psychiatrists needed to assert that I was incompetent never were able to do so.  I had individual assessments with each of them, and was able to assert my (very valid) reasons for not wanting ECT.  I was also able to tell them how the procedure worked, and had a good understanding of the outcome.  I was told a few times by nurses and one doctor, that I seemed to have a better grasp on the whole thing than even most medical professionals… It totally saved me.  I’m glad I had the education iIdid, and learned the things I did in the past that helped me escape that fate… but I digress from my initial reason for telling you about my ECT trauma story… I had wanted to tell you because at one point I brought up to Dr. Fucker that a cancer patient would be allowed to refuse treatment, even if the doctors thought it would help, if they felt it was not something they wanted to go through.  So why could I not do the same?  Dr. Fucker’s answer: I would force them into it.  He must have forgotten that they only take away the rights of the mentally ill, and not those only struggling with physical illness… He would have no grounds to force a physically ill person into treatment, and could easily get sued or have his license revoked if he did something like that.

But with mental illness, it’s different.  We justify stripping individuals of their rights as human beings.  We take our own will and exert it upon them because “they don’t know any better” or they “are too ill to be able to make a rational decision”… What about then the times when the illness is in remission, but they make a rational decision about their lives?  Suddenly the illness is considered back, and you lose your rights again… Nowhere else would we stand for such oppression.  But it’s culturally acceptable to degrade and dehumanize a mentally ill individual.  It’s ok to treat them like animals and confine them and take away all their coping skills.  It’s ok to forcibly medicate them.  It’s ok to violate them.  It’s ok to demand unreasonable feats from them… because they don’t have the mental capacity (legally) to know what is best.  I’m beyond happy that we have come leaps and bounds in mental disability rights, but we don’t clump mental illness under those benefits.  If I made the decision to sign a DNR order while I was “mentally fit” and my depression, PTSD, anxiety is considered in remission, I can guarantee that it would not be enforced should I choose to try to take my life at any later point. The wishes of my family, friends, and of strangers would be granted more clout then my own, and I would be forced into emergency treatment… They may honor it if I were accidentally injured, but if it even remotely looked like a suicide attempt, I would be “saved” and carted off to a locked unit, where all my personal freedoms and dignity would be stripped from me while they force me to “get better”…

Have you ever been to a psych unit?  Have you ever experienced what it’s like to be a “patient” there?  While there are some that are better than others, most involve indecency the general public would cringe at.  Initially, you are made to strip bare (fun times for an assault survivor) and examined.  Strangers touch you and poke you and prod you.  They ask questions that they expect honest answers to, though they are things you have yet to admit to your own therapist, forget a stranger. Most places will put you on 1:1 when you first get there, or in the least, 5 minute checks.  1:1 may sound innocuous, but imagine having to do EVERYTHING within arms length of a stranger while they watch (I have huge anxiety about using the bathroom with anyone else around, or even knowing… they watch me as I try).  Every move is scrutinized, every action is analyzed… If you complain or look for space (I’m an introvert and need time to myself to feel comfortable), you are put on higher level of watch because you are clearly looking to hurt yourself.  You are told to spill your very private story to a host of strangers time and time again.  Everyone reacts differently, and many judge you (they are not supposed to, but they do anyway).  If you are not comfortable talking to someone, you are being defiant and resistant to treatment.  If you question your medications, refuse to take them, or ask for a change, you are labeled as a problem and resistant to treatment.  If you acknowledge the thoughts in your head that got you there in the first place, you are deemed incompetent to make your own decisions, and you are excluded from treatment decisions…  You are heavily sedated at the first sign of emotion, because they would rather hand you pills than deal with your crying.  If you refuse the pills and choose to cry, you are put on 1:1 again.  If you dare to lose your shit and scream, you are tackled, injected with medication, and tied to the floor in a “secure” room (never actually had that happen, but have seen it many times.  Even the first time was enough to know that I would NEVER want to be in that position)… All those movies where they show the horrific things that happen behind the doors of a psych unit, they really are mostly accurate… and in most units, things have not changed since the 40’s.

There are a few good ones though.  I’ll give them that.  There are a few places that try their best to keep you feeling human while they degrade you.  There are units that actually try to help you while you are there, but they are rare. (insurance restrictions and budget cuts see to that).  They try to hire people that are not in it only for the cash.  They make sure that you can get in contact with a therapeutic person at least once a day.  They try to be nice as they do the body checks and the physicals.  They attempt to respect you as you go through the triggered reactions to their intrusions… but if you happen to wind up there more than once, they give up on you, label you hopeless, and stop trying…  More and more I am finding that people who work on psych units are there for a short list of reasons, and caring does not make it’s way onto that list for most staff.  It’s either 1) they need money badly, 2) they are trying to get their foot in the door to advance to other positions elsewhere in the hospital, or 3) are on a serious power trip, because that is the only place it is tolerated and even expected.  Don’t get me wrong, I know it’s a high-stress, high-burnout job, but when you go into it for all the wrong reasons, you wind up burning out faster and harder.  You are supposed to be able to ask to do your laundry (you are expected to do your own), but when you ask, you are interrupting their solitaire game or their tv watching or their magazine reading, so you are denied and scolded for bothering them in the first place.  If you happen to be having a rough time and want to talk outside of the check-in times, the power-hungry ones will always turn you away with a scowl.  The nice ones will ask you to wait a minute if they truly are engaged in something else.  And heaven forbid you can’t sleep or need to talk in the middle of the night.  You are scolded and ordered to return to your room – they take lights out as seriously as prisons do, only you are not supposed to be a prisoner, you are supposed to be there for help…  I have to admit, I miss the hospitals in CT where more people cared… I met some monsters there, but I also met some really nice people who were at their jobs because they wanted to be there, not because they had to be there… down here it feels like everyone is only it it for the wrong reasons, and we are all just an inconvenience to their otherwise boring shift that they simply want to suffer through…