Linea's Treatment Story

The first thing I like to say when I hear people struggling with a new diagnosis of anything is: "thank god you can now start figuring out a treatment to help you feel better/to help your life get put back together/to help you stop hurting so much". In my previous post I ended saying, "why do we love the diagnosis..." because we can finally start getting treatment. I have been reading a lot of bipolar memoirs lately (Kay Redfield Jamison' An Unquiet Mind: A Memoir of Moods and Madness, Lizzie Simon's Detour: My Bipolar Road Trip in 4-D, and Marya Hornbacher's Madness: A Bipolar Life.) In each of these, and from many individuals I have spoken to personally, I hear the pain that accompanies the diagnosis. The questions of "Does this define me?" "Will this be forever?" "Where is the separation between my personality and the illness?" "Am I going to have to be on meds for the rest of my life?" These were the questions I had. These were the worries I had, but at the same time I felt the relief of "at least now we know what we're working with..."

So, let's now imagine the you have a diagnosis. You know that you are bipolar (or fill in the blank). You know that prozac/other medications do not work for you because they make you manic/etc. And now its time to figure out what does work. In order to give you an idea of the process from diagnosis to treatment I thought I would give you a little glimpse at my slow path towards treatment:

When I was first diagnosed I was in a hospital having willfully checked myself in after a near suicide attempt. I was at the point where I was having psychotic suicidal ruminations that lead me to have a one on one aid that watched my every move. In the hospital I was told that I was bipolar II. This seemed very strange to me having only repeatedly experienced extreme depths of depression. I thought, where are the manias, or hyper-manias? I knew however that there was something more, something deeper than just being sad. It was a constant sadness to my core, and I knew it was something that needed fixing, that needed soothing, before I did something drastic. So I drank, a lot, and I started cutting, and I smoked pot, and tried drugs I wouldn't have done had I not been trying my hardest to fight off the seductions of suicide. At the time, I assumed these were my treatments prior to the hospital. These proved inefficient when I found myself blindly checking myself in with those magic words, "I don't feel safe".

In the hospital I was very unresponsive to all types of treatment. I fell into such a dangerous place that extreme measures had to be taken. I could not be left alone for one second because they knew I was watching, searching, for anything I could get my hands on to end the pain. This is when they offered me two options. They said, "we can send you to the state institution where you can wait until you find the right drug, which may take several months, or you can try electro-convulsive therapy". Now at this point I was beyond any other options, and taking the extreme route seemed like the best idea. I told myself "well, ECT will either kill me or fix me" so I begged my parents for the treatment (they of course did not know this thought process at the time) but eventually, full of uncertainty and fear, agreed. I am not going to go into details at the moment about all my experiences with ECT right now. It is a very controversial thing and I want to make sure that I do it justice and help people truly understand more about it, so I am just going to tell you two things: it is much more humane now, (no more One Flew Over the Cuckoo's Nest), and, it saved my life. After the first treatment the "thoughts", that urge to hunt down anything I could to kill myself with, were gone. Gone. I was still very veryvery depressed, but I eventually got to the point where I lost the constant eyes watching me and even got to shave my legs (a very big deal at the time).

After the hospital I went back to my normal college kid life, still feeling slightly blue, but on the whole much better. It was at this point that I was prescribed my 5th or 6th pill, that miracle drug, Prozac. My first day with Prozac was amazing. Suddenly everything was so much better. I did a much better job at work, I got all my house work done, I went for a run...and then everything sped up. Suddenly I was spinning beyond control. No amount of running could help me. No amount of anything could help me. At first the high was addicting, I started drinking more, partying more, spending more, doing drugs I wouldn't do. I started cutting again. I was starting to have very strange, un-Linea, thoughts ("maybe I should jump off the roof" "I wonder if it would hurt if I chopped off one of my fingers...") I was not suicidal, just very very manic. The addictive beautiful high that I experienced in the beginning was gone. I was no longer super-woman, but a paranoid, anxious, agitated child. I was breaking things. I couldn't have a conversation because my thoughts were going to fast to spit out.

Knowing something was very wrong I finally called my doctor. He told me to stop taking the Prozac immediately and prescribed me some anti-anxiety pills. Still being very impulsive, and having increasingly scary thoughts I took one. Just to calm down. Just to make things stop. To keep myself from doing something stupid. Just to keep my mind from accidentally killing itself. And then I kept taking them. I think there was a point where I told myself "I need help. It's time to go to the hospital." And then I took them all. Thirty something pills. And then I walked over to school, turned in my homework, told my teachers I wasn't feeling well and wouldn't be at their classes, and nearly passed out waiting for an ex-boyfriend/best friend to get out of class and take me to the hospital. I knew who to go to. I knew who would take the best care of me. This was not a suicide attempt. I did not want to die. I just wanted the thoughts to stop. I wanted to keep myself from jumping off the roof or in front of a subway train.

After this incident my diagnosis changed. I was not bipolar II. I could not take certain pills. Out of the hospital I made a decision to take care of myself. I decided to get the treatment I needed and though I had a few bumps along the way, (trying to cope through bulimia), I eventually committed myself to finding, and following, a healthy treatment plan. This plan incorporated close work with doctors, psychologists, and psychiatrists. It involved trust in my doctors to find a medication that made me well enough to try other treatment options. It involved asking for help when I needed it, telling the truth about my feelings, and knowing that hospitals are not shameful, but needed at times. It eventually involved a healthy change in lifestyle--no more drugs, alcohol, no more staying up all night, exercising, eating healthy, meditating, and a regular sleep cycle. I will go into my current treatments in a future post, but I felt it necessary to discuss the difficulty finding, getting, and sticking with healthy treatment. Had I not found the treatment I  have now I would be nowhere close to where I am today. I may not even be here at all. In conclusion, the diagnosis is indescribably painful, finding treatment seems impossibly hard, but with perseverance, a little bit of luck, good resources, self advocacy, and at times, pure trust that things will work out, people can find a better life and get the help they need and hopefully end those terrible statistics involving extremely high rates of homelessness, incarceration, and suicide for those struggling with a mental health conditions. Treatment works, and I will also give you some resources to find good treatment in my next post.

Treatment

My story continued...

To follow up from the last post I want to once again say that we are making February our "share your story month". Because of this it is probably appropriate that I continue to share my story in February not late January. After sharing my story last week I know many people are wondering where I am now, maybe not necessarily occupationally because you can follow that on our website, but emotionally.

So out of my commitment to be completely honest to my readers here is my story now, today, in all its emotionally exposed glory:


Yesterday I went to see my psychiatrist. I told him that I am feeling slightly moody and find myself creeping into these unintended, uncontrollable moments of frustration, hyperactivity, or utter exhaustion. We talked about the need to "tweak" my meds, and we talked about the likelihood of changing one out completely sometime in the near future.

Now, I have been stable for a long time, aside from a small yearly depression that comes around the anniversary of an overdose, a depression that lasted slightly longer this year, but was still completely manageable. I still consider myself stable. But I continue to have these little hiccups of symptoms. Moments where I would feel much better jumping on the bed for hours than I would trying to attempt even a partial night's sleep. Moments where I feel so exhausted after having lunch with someone that I come home and pass out in seconds. And worst of all, moments where I find myself furious over the thought of doing dishes (and I am not an angry person by any means).

I tend to freak out about such hiccups. I think, is it coming back?! Oh my god, what if I have mixed episodes again! I'll have to be locked up! All the work I'm doing will be ruined! And then I spin off into these worry tangents until I either hit a wall, cry hysterically, or slap some sense into myself and tell myself to knock it off! These are hiccups, nothing terrible is going to happen. I am not going to suddenly loose it with all the safety nets in place, and all the lessons I have learned.

And so I go through this, I have this constant conversation with myself every time a little bump comes about. But then my common sense kicks in and reminds me that:
1) every time I felt an episode coming in the past I told my doctors immediately
2) I have learned healthy, safe coping techniques if things do go wrong
3) I am aware of the most minute movements towards any episode
4) I have an amazing support network

When I go through these hiccups, these "tweaks" in my meds I am always scared to tell people. I travel the country telling people my story, telling them horrifying things but making them feel better by saying "but I'm stable now" at the end. And I am. Just maybe not perfect. And I fear telling people, "I'm great but I have been having issues with my meds", or "I'm wonderful, but have been having small worrisome mood swings lately", because I'm afraid they won't get it. I'm afraid they will still be afraid for me. So I often tell them I'm fine no matter what.

But that's not truly telling my story. That's not being authentically honest. So I have made a promise to myself, I will always tell people exactly how I really feel. And if they worry I will remind them of all the things I remind myself. I will tell them how I feel in order to show them that when you are bipolar you have small bumps sometimes, but they don't paralyze you. You have to keep going on with your life. And you can with all the safety nets in place.

So, here it is, here is me right now, at this moment:
I am Linea. I am bipolar and have been having small mood swings lately that are causing me to have to make small adjustments to my medications and it makes me anxious. However, I am completely fine. I am capable and happy doing all the work that I do because I know how to take care of myself. Things will not happen as they did in the past because I know how to handle my stress levels, how to keep myself from coping in unhealthy ways, and how to ask for help when I need it. I am stable. I have bumps. And it's okay.

My story

We (the momma and I) have decided to make February a month of sharing stories to fight stigma. So, along with our newly posted video on YouTube we are going to start sharing our stories and learnings on our blogs, starting conversations about it on our Facebook and Myspace sites, and commenting on it on our Twitter page. So, visit us, chat with us, and learn with us. And without further adieu, here is my story...

There was a moment in my life when I almost drowned.

Living in the largest dorm in the country with three best friends, experiencing my first serious college boyfriend, living the perfect life of a well-off artsy college kid, I couldn’t have dreamt of anything better. That is, until I turned my back to the ocean and was swiftly and dramatically pulled in by the undertow.

One moment I was there and one moment I wasn’t. It was as if I had suddenly had my brain replaced by someone weaker, angrier, sadder. I didn’t know where I was or what I had set out to do anymore. I couldn’t understand what went wrong. I couldn’t understand why I was suddenly seeing pools of blood every time I closed my eyes.

It was a dramatic and intense case of depression. I stopped eating. I broke up with the man who was, at that time, the love of my life. I stopped leaving my room. I stopped all contact with the world, and whether I pretended I was there or not, my eyes were empty.

This went on for several weeks. Floating around Chicago, the city that I had worked so hard to get to. To me this went on for a lifetime. I floated out to sea.

Then my boyfriend, who was now just a friend-friend, called my parents. He called, and just as swiftly as I was pulled under, I was pulled out.

Completely.

My dad arrived from Seattle no less then ten hours after he was called. My life, my room, and my thoughts were packed up and shipped out. Flown back to Seattle and, in my mind, never to return.

Nothing could have been more painful. Nothing could have been more dramatic to me at that point and place in my life. Nineteen years old and suddenly I was forced to leave my friends, my life, my freedom and everything that I had built within the last two years of hard-earned independence.

I arrived home tired, cold, and wet, water still in my lungs.

The next couple of years moved from an undertow to a tsunami. My mind moved quickly from a simple depression to a devastating suicidal obsession. Looking back I am amazed I am even here to tell my story.

In the next year and a half I spent time in hospitals for suicide prevention and for overdose recovery. I spent time in apartments, manic and drugged and depressed and dangerous. I spent so many hours feeling completely out of control of my mind and so many hours trying to fight against it with every form of self-medication and self-harm I could find that I am amazed I have the ability to form thoughts or press my fingers to these keys.

It took me a long time to come to terms with what was happening. After having a “wait and see” diagnosis of bipolar disorder II at nineteen I spent many, many months fighting the label and implications before I finally received my final, “for sure” diagnosis of plain old bipolar I. My months and years of fighting only made things worse and it took me a long time before I realized that if I was good to myself and my body, my bipolar would be good to me. Who knew stimulants could make you manic or alcohol could make you devastatingly depressed!

Once I finally gave in and decided to change my life things began to turn around again. Though it took lots of self-care and finding the right doctors, counselors, and meds, my stability allowed me to live the life I had always dreamed of living. My stability was more then just taking care of myself and finding the right help however, it was also my amazing luck to have the opportunities and support network I do. It was this fact that inspired me to begin to make a difference in the mental health world.

Having spent time in the worst psych units with the saddest cases I realized that things must change. I realized that people need to talk about these things. People needed to be able to talk about their thoughts, lives, and feelings. We need to be able to share our stories.

So…here I am today, graduating, speaking at conferences, in classrooms and auditoriums, writing and collaborating with mental health and education professionals, working with amazing mental health organizations, writing a book. Through my experiences I have realized that I needed to make a difference, and through my opportunities I have hopefully begun to do so. I am so excited and pleased that I have the opportunity to make the differences that I am seeing.

Today I have found my way back to dry land where I can finally stand on firm ground, and it is here that I will help others do the same.

(This picture was taken when I was 20. I look a little different now that I finally take showers and have let my natural hair color grow back.)

why so hard?

So, I had this paper that I was supposed to write. It was a simple paper, four to six pages synthesizing my biggest ideas throughout college and talking about my favorite classes. I was supposed to simply write about the ideas that snowballed in my mind. The ideas that connected with thoughts in other classes and the way they changed the way I understood the world. Normally, this assignment would thrill me. I love thinking about thinking. I love when my ideas connect and snowball ultimately making my world shatter through the realization that everything I thought I knew was actually wrong, or at least completely different than I ever thought. But this time, given that I have a lot of other stressors on my plate, things like a looming college graduation, a non-existent post-grad job, and the fact that the paper came at the anniversary of a very painful past experience, (a near death by overdose), it was nearly impossible to finish. It has actually taken me about a month over the due date to complete. And last night, finally, I turned it in.

So, why was it so hard, I ask myself. Aside from the obvious previously mentioned items, I realized that it forced me to look at a part of my life in a different angle. I found it strange that I can write a memoir about my experiences with bipolar, and travel the country sharing my story, but I couldn't seem to write a simple paper about my college career. The thing that I realized though, is that I have not had your average college career. Throughout my time in college I have been diagnosed with bipolar, been hospitalized two times, came extremely close to losing my life several times, and been through innumerable amount of ups and downs, round abouts, and zigzags through the world of mental illness, self-medication, and that continuous search for stability. It was through all of this that I had one goal: to just finish school. So it was through all of this that my biggest ideas formed. Through all of these things I was attempting to write papers, read, grasp big ideas. In the end my experience with bipolar and my experience as an undergrad became completely intertwined.

In realizing all of this I finally just realized that there was still healing to do. I still had to come to terms with a lot of trauma and pain that I thought I had already coped with. It is through these tasks, seemingly menial papers, that we originally assume to be easy that each of us must realize that there is always another level. There is always a deeper level to which we can explore ourselves and our lives. Always more to the story that we originally thought. Though the paper was extremely difficult and painful I came to realize that I needed to go to that painful level to truly come to terms with my college experiences. I needed sludge through the painful moments in my life one more time so that next time it might be a little easier. Sometimes we find ourselves asking, why is this so hard?! It's because we need to confront it, to push ourselves to the next level, and to realize that everything isn't as it seems.

My Bipolar Checklist

This is something I wrote a long time ago after my first panic attack in months. Thought it might be something useful to share...

Okay Linea. Here we are. Here we are again. You on the bathroom floor. Your boyfriend tired and worried. Your mind numb. Now, given that this hasn’t happened in months and months we must figure out where this came from. It’s time to use the skills that you have gained in this "vast journey" of yours.

     First. Your “Am I Depressed” checklist:

     Within the last week have you been staring a lot? Been unable to read/clean/get important things done? Have you been drinking alone? Do you spend hours sitting at the computer doing nothing? Have you been unable to cry? Do you have a need to harm yourself?

     No.

     Second, “Am I manic?”

Within the last few days have you been pacing, shaking, or cleaning excessively? Do you have a lot of repetitious thoughts, words, or phrases? Have you started the mantra of “I need, I need, I need…”? Has there been excessive spending, partying, anything?

No.

Third, in general, have you:

     Had an upset stomach?

     Been throwing up?

     Been cutting?

     Been eating excessively?

     Been drinking excessively?

No. No. No. No. No. 
Everything checks out fine. 

This is not a bipolar episode. I often find myself checking these lists daily. If it is none of the above then I know that I am simply having the same normal feelings of pain that every other person on earth experiences. If it is none of the above then I simply need to see where the pain is coming from and then just breathe it out. Just sit with it knowing that I have been through worse. I can get through this.

to sleep is to dream

(Image by Chris Applehands)

I have been thinking a lot about rest lately, (if you haven't already figured that out by my last rant about doing too many things.) But I have been thinking about it even more because I haven't been getting very much of it in the last few months. I'm not quite sure what has gotten into me, maybe it is my medication, (lamictal and trileptal,) or maybe it is a small case of PTSD and my fear of something going horribly wrong, again, but I have been having horrible dreams, and horrible anxiety when it comes to falling asleep in the first place.

My dreams are almost amusingly obvious when it comes to symbolism, they have to do with me protecting an innocent child, (probably myself,) or me being attacked or gunned down, or murdered. It is amazing that my body, (though it was me in the past that was close to murdering myself,) remembers and almost prepares itself for some reoccurring trauma. When I think about how I am doing today I don't think about any fears regarding any sudden feelings of wanting to harm myself, but when my sleeping mind thinks about how I am doing it always seems to think otherwise.

Again, I think it is just my continuous process of recovering from the horrible things that I did, and wanted to do, to myself in the past. As for now, however I am keeping a look out for any new symbols or feelings in my frantic dreaming. I am also aware of the increasing pace of my thoughts and the increasing number of dreams, so being aware of past patterns I am also keeping an eye out for any increasing signs of manic behavior.

There is one form of comfort in all of this however, I know what to look for. And I'm not afraid! It's really quite amazing to be comfortable enough in myself and my ability to know my symptoms that I am not in the least bit afraid of mania. In the past I would have made myself manic just by stressing over becoming manic.

insurrection

(picture created by some amazing artist whose name i don't know)

im sitting here in my living room reading extremely dense german philosophy and drinking a gigantic cup of hot chocolate and listening to red house painters in my underwear (which i suppose is irrelevant, but it does create a sense of the freedom of this scene) and as i am reading about the effects of the french revolution on romantic/idealist philosophers and socialist and nationalists and all those pre-hitlermaos i have to laugh at my previous self. the self whose main goal before she died was only to start a revolution. the me who thought that the greatest joy in life was being intoxicated/high and alone riding public transportation.

            i think about all of this and laugh at the fact that i merely wanted a reason to fight. or something to fight for. i wanted for it to be okay for me to be angry or mean or crazy. i wanted my actions to be justified. i didn't know why, or what for, but i wanted to revolt.

         and its funny, cause i still see revolutions with some sort of romantic lense. they still represent some sort of beauty to me, and the thoughts and art and behavior are intriguing to me. i still enjoy reading les miserables and watching 60's documentaries.

            i don't know what exactly im getting at, but this: i sit here alone, free, with my hot chocolate, studying past anger and pain, and i am happy and content. i am safe here. my life and my mind have been stable quite a while now, and i have developed a safe and sensible way of dealing with myself. im okay not being in a revolution. im okay not killing or hurting in order to get what i want. im okay without using some outside political or economic or spiritual source to deal with my own demons.

            getting fucked up and riding the train alone might be amazing. and terrifying. and sublime. that fear and excitement that comes with carrying drugs past the big mean drug dogs, or the "are they looking at me? can they tell?" is invigorating.

         but so is sitting in your living room and doing homework until your love comes home to give you a hug.

         let me not seek past excitement to fulfill a longing for infamy.

         excitement comes in all sizes.