Advocacy

Just posted a new blog on Advocacy on the BringChange2Mind blog. Hope you find it interesting and/or inspiring. Have a wonderful Monday!

Please don't touch the flowers...

 

Boston, sitting in this little upstairs Vegan restaurant was the greatest sign taped to the window:

"Please do not touch the flowers. They're real.

Thank you" 

Reappearing Linea

Once again I have disappeared into a land of excitement, confusion, and way too many things to do. But now I'm back! If you have missed hearing my longer pieces please please visit my posts on the BringChange2Mind blog where I am a writer and editor. I recently did a series of blogs on my journey from diagnosis to empowerment, the "empowerment" post is not up yet, but I will update you when it is. Now that I have some additional amazing bloggers (Jeremy and Marc) on the BC2M blog team I will now be posting much more here.

Other exciting things that have happened are the fact that I have yet another new job, am a finalist in the DBSA Speak and Be Heard Contest, and have a podcast up with the Child and Adolescent Bipolar Foundation. I'm hoping the link will be at the bottom of the post, but knowing my lack of understanding of html code it may not work. If not please visit there site here.

The job is going to be very fun. I am the project director on a project funded by SAMHSA's What a Difference a Friend Makes grant. We are going to be holding an art contest for youth artists 18-25 living in Washington state who have experienced a mental health condition. More on this to come, but it will be very exciting and fun ending with a big Gala exhibit and art tour.

 Well, that's all for tonight. Just wanted you all to know I was still alive:)

In Circles

The pieces come back together...

This morning I returned from a weekend where eighteen family members (three adopted family members) came to one house to celebrate being together. We ate and ate, practiced some old family traditions (Scol!) and slept anywhere we could that wasn't too damp or lumpy (though this usually changes by morning). It was a beautifully sunny weekend and I felt so much love between all of us as we sat around the fire, enjoyed homemade pies or feasted on paella.

When I got home this afternoon I realized it was once again time to work on the book (which now has a publisher!!) so I left my bag by the door and got to work. I find it important to note that I travel around the country speaking publicly about my story. I share it all the time to audiences of 700+, but I haven't read it in a while. In a little over a year and a half in fact. And I will tell you what, it is hard.  Really really hard. And painful.

It is hard to remember, no, let me rephrase, it is hard to read your exact thoughts when you are dealing with the pain of suicidal ideation or the pain of losing friends because of your depression. It is one thing to work through it everyday, which I have gotten much better at doing, but another thing to return to your exact transcripts from the moment of pain.

I remember when we first started playing with thoughts about the book,  people would ask us why we would want to revisit so much pain. And I always knew why, I want to teach the people who don't understand and let the ones who do understand know that they are not alone. I knew it would be hard. But I suppose, after a year and a half of not reading it I forgot.

I suppose the thing I am here to say is, I am glad that I spent the weekend with my family. I'm glad that they could remind me of the happiness and joy in my life even when I'm forced to remember the pain. I'm glad to know that when I was in the most painful spots, those points in the book that made me start crying even  reading them today,  those moments when I never thought anything would ever get better, when I never thought I could enjoy another family event, I'm glad to remember and know that I can be happy. It is possible.

In years past I never thought I would be able to be happy again (happy happy, not manic). And I guess having been relatively stable for so long I must have eased into happiness, because today, having juxtaposed Kirkwood-stravaganza with the really difficult passages from the book I realize that I have the ability to be happy. It's not broken. And I think maybe that is what I'm here to tell you all. Eventually happiness comes back. When you get to the deepest most painful place, the place where people are telling you things will get better and you just want to spit in their face because you know it's a lie, listen.

It takes a long time for all the pieces to settle when your life has been a tornado, but eventually, just as everyone told me it would, it did all come back together. I am happy. I am whole.

The Courage to Change

It has been quite a while since I have posted anything on here so I must apologize.  With all the work we have been doing the blog has fallen a bit behind. I would also like to let you all know that I have been given the honor of creating and manning the brand new BringChange2Mind blog (http://bringchange2mind.wordpress.com/) so when I am not writing here, please check the BC2M blog to see if I am posting there. I will try my hardest to stay loyal to both.

And now a quick update... In the last month since I wrote I have been to St. Louis, Chicago, and New York, and been the team leader for two NAMI Walks, one in Seattle and the other in Portland. It has been an extremely inspiring, energizing, and exciting month as I made new friends (the Close/Pick family, Kitty and her mom, the Francolini family, and so many more), learned about new research and treatments, and met and listened to new and old heroes (Glenn Close, Jessie Close, Calen Pick, Kay Redfield Jamison, Marya Hornbacher, and Rosalyn Carter). If you don't know who some of these people are please look them up as they are all heroes in the mental health awareness (and women empowerment) world. I have had the honor of attending fabulous events in cities I had only dreamt about ten years ago. But it has not been all easy and joyous.

As I present and speak publicly about my illness and my (relative) stability I feel as if I need to always be happy, and if not, always act happy. I had gotten to the point where I found myself presenting a false image because I feared that if I let people know that I still get depressed sometimes, or still feel unsteady sometimes, they will feel there is no hope. I felt that if I am going around the country telling people that there is treatment and stability for people with mental illness, my hiccups in stability would prove this false. I have talked about this before in a past post so I won't go into it completely now other than I promised myself that I would always be completely honest, so, here it is...

The last month has been extremely hard as well. It has not only been the anniversary of my first hospitalization and the exhaustion of five national trips in one month followed by two 5K walks, but meeting so many people with one's same story is very difficult. Meeting so many people that share your story and hearing their struggles not only feels comforting as you are swiftly pulled from the aloneness of a diagnosis, but it also reminds you of all the pain you experienced. It reminds each individual of how lonely you really were and how different your life would have been had you just had this new friend(s) with you from the beginning. It is strangely validating, empowering, and comforting, and yet, it is often painful to meet people with such similar stories of agony, near suicide, self-harm, self-medication, etc., etc., etc. It is beautiful because everything is suddenly okay. You have found yourself on solid ground. But you can't hep but remember how terrifying it is to dangle from the cliff.

The last month has been more than exhilarating. It has reminded me of how much I love my family, how happy I am that I am alive, and how honored and lucky I am to have the opportunity and the health to do all the things that I do. It has once again reminded me why I need to continue to speak and share my story. People should not be alone in this fight. People should not have to feel pain when they finally find community years after their initial diagnosis. People should feel comforted, cared for, and loved from the very beginning. Feeling the ups and downs of this month has made that fact even more present in my mind. We need to change things now. We cannot let this continue to happen. We cannot let so many of our children end up on the streets, end up incarcerated, end up losing their lives by self-medicating. We cannot let a treatable enemy like suicide claim so many victims because they are alone and scared. We need to talk about this. We need to change things fast. Please help us change things by sharing stories, by letting people know that they are not alone. In my mind the biggest way to fight stigma is to talk. Share your truth. We need to remind the nation that 1 in 6 adults suffers from a mental illness by sharing real stories from the heart. Please have courage, for all of us.

Staying Steady (again)

If you have been flowing my blog throughout the last year please forgive me for recycling this post, but I thought it was perfect for my "Treatment Month" posts. Here is my treatment plan, and my ways of staying stable:

Whenever I speak to a large group of people about being bipolar, they always want to know about my coping strategies. They want to know what I do when my life is going a little too fast, or when I am moving too slow to get help. They want to know, how I get through each day, month, year and remain safe, stable, and happy. I feel that though my strategies are based on my individual personality, most of them are rather universal. So, here is a list of the things that help me get through life relatively smoothly, for now anyways...

A Support Network

I can't move forward without some form of support network. (Actually, I could if I had to, but they sure make life a hell of a lot easier.) My family has fought long and hard to help me get the treatment, doctors, medication, and education I need both to help me cope with my first onset of bipolar, and my life today. They were always there to stand with me, even when I may not have wanted them there. On that note, my doctors, counselors, and psychiatrists have also all been amazing sources of stability. They are my solid ground when my life begins to sway, shake, or completely break to pieces. My boyfriend has also been an amazingly huge influence on my life. He has been through my rougher times and was the one to help me move from an extremely harmful lifestyle to one where I feel comfortable not drinking, doing drugs, or constantly partying. I also have amazing friends that sat with me in the worst of days. Wonderful ex-boyfriends, old roommates/best-friends and adopted sisters always make life much easier to swallow.

Lifestyle

For me this was one of the hardest choices. If you ask most 18-21 year olds what they do on the weekends, especially those in a college or dorm setting, they will tell you that they drink. They go to parties. They go to bars. And I was just your average 18-21 year old, minus the fact that I was bipolar. I was a little more than affected by the late nights, the excessive drinking, and the drugs. I was stuck in a cycle where all of my friends drank, and all of my coping mechanisms involved putting my mind in an altered state. In the first years of my diagnosis I didn't want to think about how awful I felt. I wanted to be "normal." I wanted a quick distraction. I wanted to be everything I envisioned a "bipolar" person being: a mess. It took a lot of work, a lot of self talks, good friends, and eventually some pretty scary moods swings to get me to move into the healthy lifestyle I live now. It would also have never happened without fate leading me to good friends who lived healthy lifestyles. Good friends who had been through pain, substance abuse, and eventually the decision to get straight. Good friends who inspired me to change my ways. It is also amazing that one of these good friends has become an amazing boyfriend and best friend.

Today my lifestyle has included sleeping well, eating well, meditating, flossing, running, yoga, reading, music, volunteering, and lots and lots of writing. I try to allow myself time to do the things that I know make me happy. These also happen to be the things that make my previous life of parties and anger seem like such a waste of time and energy.

Skills Training

Now, this is something I think about a lot,  but it has also been a big conflict within me. When I began skills training with a counselor  in high school she used to tell me things like, "look at yourself in the mirror and say, I am beautiful..." and I used to leave and swear that I would never go back to an appointment with her again. But I did, and every time she used to say some other cheesy skill I should use to make myself feel better. The next counselor I went to used to tell me to look in "my boxes." And I would again leave feeling angry and skeptical and decide I never wanted to see her again. It took me years to get to the point where I found a counselor I trusted enough to tell them that I hated those homework assignment kinds of exercises. I told her that I didn't want to be counseled by Oprah. I didn't want to be told to be kind to myself, unless it was hidden in something else she was saying. It was through my true honesty about my treatment that I began to actually use some of the advice I received from my counselors. Today I have developed a group of core skills that help me get through the rough patches in life. It was only through the skill of my counselors and the trust I eventually developed that I began to find life skills that worked for me, (that weren't cheesy or what I thought of as stupid.)

Counseling

This has been a huge art of my treatment, and now that I am stable, one of the most important. Because I talked about it in the previous section I simply want to say that I think everyone should see a counselor. It is so important to have someone who is not only trained to listen and respond appropriately, but who is not emotionally involved in your thoughts, feelings, or problems. I love my counselor very much because she has taught me how to begin to help myself, be nice to myself, and how to move forward after experiencing so much pain.

Medication

This was a hard one for me. I am not always a fan of medication. It has not always had the best effect on me and at two different moments it literally almost killed me. Now, I am a girl that likes my body to be healthy and natural, I don't want a bunch of chemicals deciding what mood I am in, but after two hospitalizations I have come to terms with the fact that medication isn't always bad. Today I am on Lamictal, Trileptal, and Lithium. It has taken me about 13 medications to get to three that work for me, and I have now been on these for about three years. I am on medication now because I know that I am not ready to be off of it. Even though I have changed my lifestyle and have become much healthier I am still not an expert on my body or my illness. I am still not aware of the natural ways to get out of a paralyzing depression or an extreme case of mania. And until I know that I am ready and able to use my new skills to get me to a safe place I will stay on medication. It is a slow process and I have only been diagnosed for five years. One thing I do know however, is that I will not be on medication forever. I will get to the point where I am aware and educated enough in my body and mind that I will feel comfortable being off medication. Someday I may want to travel to a third world country to save children, or someday I may want to have children of my own. If these things happen, I want to be free of medication. I do want to find a natural way to deal with my minds many states, but for now, I will continue my self-education from the safe place of medication.

These are just a few of the things I think about everyday when it comes to my health in my body and mind. I hope this is insightful, if not helpful, and please realize that each person's treatment plan and coping skills are different based on their own needs and understandings of the world.

(The picture in blue was taken by Ms. Morgan Minear at the MOMA while we were watching a video installation)

Things I've learned...

(Polson, Montana)

Within the last week I have attend two vastly different conferences, the Empowerment of Native Americans with Disabilities Conference, and the Pacific Rim International Conference on Disabilities. Though they had very similar focuses, and often similar outlooks, the cultures and people were extremely diverse. At both of these conferences I found myself feeling very small, and very under educated in the cultures, needs, and expectations. I found that like my mom, I felt very humbled. Given that I was so impressed and profoundly amazed by these conferences I thought it would be nice to share some of my favorite moments with you:

-Being blessed with sage and a feather by a Native American elder made me feel loved/scared/warm/confused/blessed.

-Listening to a brilliant paraplegic lawyer who travels the globe, frequenting impoverished countries to fight for disability rights makes me feel proud/amazed/small/inspired.

-Watching a mother and daughter present about their journey from the daughter’s severe brain injury to her now internationally read magazine for young woman with disabilities (Logan) made me feel joyous/enraptured/lucky/ready.

-Feeling the beat of the drum, hearing the jingle of the jingle dress, seeing the fancy dance as we were presented with a Native American cultural demonstration, and hearing the account of a deaf salsa dancer’s memories of 4,000 fans clapping in sign language made me remember the importance and the universality of the arts. It made me remember why they are the focus of my life.

-Learning the importance of teaching social networking to all people as a means of fighting discrimination and allowing full inclusion into society made me aware of all the things I don’t think about.

-Watching the sunset over the Pacific Ocean with my family, in Hawaii, made me feel lucky/blessed/loved/empowered/inspired/small/ready.

(Honolulu, Hawaii)

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