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.

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

What is going on here?!?

I think this is a question that many people with a mental illness ask themselves. Why am I feeling like this? Why am I acting like this? Why can't I make it stop?!

These were the thoughts that were rapidly firing in my head as I tried to figure out why I just couldn't be happy and go out with my friends, or why I just couldn't slow down and relax. For the longest time I hated myself for not being able to fix "it". In this society where we are told we should "just smile" or "walk in the sunshine" we assume it is our fault for not trying harder. We assume we are weak or bad for not perfectly controlling our mind and our body. We assume that there is something wrong with our personality as opposed to our chemistry. When I was first depressed to the point of suicide I got into a cycle of feeling agonizing pain of depression, exhaustion and defeat from not being able to fix it, and an extreme hatred for my lack of strength and drive to pick myself up. It wasn't until I was in the hospital on a suicide watch that I was given my first tentative diagnosis, Bipolar II.

Now, I grew up with a special ed teacher mom and a vocational rehabilitation counselor dad. I grew up being taught the importance of being sensitive to disabilities, the equality between every person no matter their difference, and the importance of providing access and help to those with specific needs that may be different from my own. I grew up obsessively reading the DSM and diagnosing my guinea pig, Herman, with Tourettes Syndrome because he had certain ticks and would squeak uncontrollably at times. (And although I knew all about Tourettes by the age of seven I knew very little about guinea pig ear mites). Anyway, when it came down to it,  I knew about disabilities. I knew all about "differences" and the normalcy of said differences. I knew all about what the word "label" meant in that community and knew that one should not use a condition to classify the whole of a person. 

Maybe this is why it hurt so much when I was diagnosed. Maybe deep down in my heart I knew just how little the rest of the world knew about disabilities. Maybe I knew the discrimination and misunderstanding that came with a mental illness label, because I found my mind screaming "No. Not me! I am not BIPOLAR. I am not like that. I'm not CRAZY". To me, someone who found every disability as simply another thing that makes us unique and special, this diagnosis made me into something I didn't want to be. It grouped me into a category that was bad. And whether or not the people in this category were "bad" or not, societies view and opinion of them was. I was not going to be one of them. I had spent my entire life trying to be perfect, flawless, and this was the biggest flaw I could ever imagine.

 However, on the other hand,there was the small, scared, childlike voice inside of me saying, "its not my fault". Even writing this today makes me tear up when I remember just how hard I tried to make myself feel normal, be normal. I tried so hard to control my emotions, but the more I tried, and the more I failed, the more I punished myself. I had two competing voices in my head, the blamer, "it's all your fault! If you tried harder we wouldn't be where we are today!" and the blamed, "I try so hard. I'm not good enough. I deserve this pain." It was a dangerous downward spiral that became even worse when it moved from mental to physical hatred. Having a diagnosis validated those "it's not my fault" cries of the blamed. It allowed me to start being a little bit nicer to myself.

It took me a long time to be nicer to myself, and in many ways it is still a very difficult struggle. The diagnosis, for me,  was one of the most life changing parts of my illness. Though it may not have been more life changing than almost losing my life, it changed my view of myself. It forced me to come to terms with the blamer and the blamed. It helped me realize who I really am and whether or not a label (BIPOLAR) defined me. At first I felt that the words were etched into my forehead. I felt that with one word I was someone completely different. Years have taught me that my diagnosis can never define me. It may define some of the traits of my illness, but it will never define my exact reaction to those traits, or even my reaction to my reactions. Through my diagnosis I have been able to take the blame away and realize that this is simply something  unique about me. A blessing and a curse that makes my life slightly different from other peoples' lives. In finding my diagnosis I have found the most important thing of all, the map towards treatment.

Next time...why do we love the diagnosis? We love treatment. Why do we love treatment? Because it allows us to function again!

Diagnosis Video

The Diagnosis (Helpful Resources)

The momma and I have decided to make March the month where we talk about the diagnosis. So in the next month I am hoping to share my thoughts on the diagnosis (and more specifically that of bipolar disorder, since that is the one I know most intimately), my thoughts on the pain of having a new label ("bipolar"), and my thoughts on the importance of finding an eventual diagnosis so that you can get the treatment you need.

So, the first thing that I would like to do is to provide resources for information about the main diagnosable mental health conditions. I want to provide this first, rather then share my personal story, because to some, good resources may be more urgent. As I discuss my diagnosis throughout the month you can always go back to this post for further information. Because so many of these sites do such a great job at explaining and addressing these illnesses (though I hate to call them illnesses) I will simply provide links to their explanations and definitions rather than attempting to create my own. I want to provide resources so that you can learn more about these illnesses and their signs and symptoms. All of these resources should be hyperlinked, so just click on the pinky/purply text.

The best place to start when learning about mental illnesses is to check out NAMI’s (National Alliance on Mental Illness) “mental illnesses” links page. Through this page you can access information on illnesses such as bipolar disorder, schizophrenia, post-traumatic stress disorder, major depression, borderline personality disorder, obsessive-compulsive disorder and many others. Each page talks about what the illness is, how common it is, what the symptoms are, what medications and treatments are used, and more. You can also visit BringChange2Mind.org and under “Learn the Facts” view a quick list of common signs and symptoms for Post-Traumatic Stress Disorder, Depression, Bipolar, and Schizophrenia. For more detailed information you can visit the National Institute of Mental Health’s (NIMH) Health and Outreach page .

If you are worried that you are suffering from an undiagnosed mental health condition there are several online mental health screenings. You can find some of these at the Depression and Bipolar Support Alliance (DBSA) website. At this link you can find confidential online depression, mania, and anxiety screenings, as well as a downloadable child mania rating scale. Of course, if you are not only worried that you are suffering from a mental health condition, but are also having thoughts of suicide please visit the National Suicide Prevention Lifeline (http://www.suicidepreventionlifeline.org/) or call 1-800-273-TALK.

The important next step if you think you have a mental health condition is to talk to a professional. It is extremely important to talk to a doctor before you diagnose yourself, but it is also important to go into the appointment with as much information as you can so that they can look at all the facts and get you the help you need. If you do not have your own doctor, and cannot find one in your area resources like BringChange2Mind's contact us page and the Knowledge Exchange Network (KEN)
(1-800-789-2647, 1-800-789-2647 or  1-877-495-0009, 1-877-495-0009
Live operators available 8:30 AM — 5 PM EST to refer you to public mental health clinics near you) may be able to help you.

Once you have an appointment, Healthy Minds has a page devoted to “Choosing a Psychiatrist”, answering questions like “where do I start?” and “what treatments do psychiatrists use?”.

I hope that some of these resources help make it easier to learn about a possible mental health condition and how to move closer to a diagnosis. In my next couple posts I will be discussing my personal diagnosis, and the importance of reaching a diagnosis.

Grieving the diagnosis

(I have no idea who did this art, but if anyone knows please let me know so I can give them the credit they deserve for such an awesome piece of work!)

My it has been a long time since I wrote a post. With school ending, the holidays, and a trip to Chicago I've been a little distracted as of late. However, its back to work, ultimately leading me back to blogland.

As I have somewhat discussed in previous posts, the last few months have been rather difficult for me. As my psychiatrist explained, I am a rather "hard patient" because my "life isn't all that stable" at the moment. But I wonder, now that I have what I believe to be a rather stable life, how is my life not stable? Now, I understand that I am in a strange sort of limbo being a new college grad without a job, (or at least a job that makes enough money to live an "adult life"), and I know that I do a ton of traveling doing speaking engagements, (and as many people explain, jet-lag is hard if you're bipolar), but I feel that I manage my "unstable life" rather well. Or at least most of the time. Until I hit three solid months of depression, having been completely emotionally stable prior to my normal yearly late October relapse, (this yearly relapse is due to a mix between solemn and painful mental health related anniversaries and changes in weather), but this year it just kept going due to a few major added stressors (such as impending graduation and the fear of finding health insurance).

But all of this I believe has been addressed in past postings, so what I really wanted to talk about is grief. In these past four months I have been trying my damnedest to be healthy and stay well. I made sure that I was not only continuing to take my meds, but I was also maintaining healthy habits such as exercising (yoga and running), meditating, and additional stress relieving activities like my new found hobby: knitting. I have tried to be patient and kind to myself and have worked with my psychiatrist to increase and adjust medications to help me get over this bump. But as I found myself continuing to move deeper or simply stay in the "pits of despair" I found myself moving into the same mind-frame that I experienced when I was first diagnosed with bipolar. I found myself feeling, to put it simply, angsty. I found that I was reverting to the teenage-angst felt when life just doesn't seem fair. When you realize, why me? And why now? I found myself getting angry at whoever or whatever has done this to me. And though I continually feel that my bipolar is part of me, though not all of me, and that I wouldn't want to get rid of it, I simply wanted it to go away, if not for even a little while.

So I suppose my question to the world is, and specifically to anyone suffering from a chronic condition or disease (and I don't really consider bipolar a disease), do you ever get over this grief completely? Do you ever just cope and come to terms with the fact that you may continually have dips in your health, even if they continue to become increasingly easier?

I know that for me they have become easier, this is by far better than my initial diagnosis, but it is still terribly frustrating sometimes to know that I may have this occur again and again. All I know is that I will get through this and it will continue to get better, but somedays, on my most 13-year old angst ridden days, I can only continue to say, this sucks.