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.

Just in case you missed it the first time...

I'm back!

Pardon my brief absence. Having gone to the conferences and a week of excitement and adventure (five airports, 2 conferences, 1 keynote, four break-outs, and five states) I came home to a leaking bathroom ceiling and wall and a large photography midterm. So, now I am back and ready to roll and keep on bloggin. The problem for now is that I am minutes away from bed and have to leave you with this short little check in. I promise however, that by the end of this weekend you will feel fully satisfied with a (hopefully) inspirational and powerful post brought to you by none other than me, Linea. So, as I leave you tonight I will provide you with this, some conference pictures and my favorite learnings from the conference (and yes, I made up a new, poorly phrased word to explain the brilliant and insightful lessons I was taught).

When asking a group of amazingly brilliant, powerful, and to some, "severely disabled" young people, "would you want your parents to tell you you were paralyzed/autistic/cognitively challenged?" The answers?  A simultaneous "YES"! "It's my body". "I deserve to know because its me". "I have to deal with it, not them". "Let me know so I can move forward".
Here are a few of my favorite pictures:

The most important the I learned: listen. Listen and learn.

From Storytelling to Advocacy

I am going out of town next week to present at two conferences, one in Wisconsin and one in Texas. At these conferences I always share my story and read from my personal journals written during my most painful moments. Presenting to teachers, mental health professionals, and others who are somewhat well-read in the subject of bipolar and mental illness, I know that I want to share my most intimate moments with the illness. I want to let them see the mindset and thoughts that go through someone's head while they are in an episode. I want them to be able to see what it is really like for someone suffering with a mental health condition because I know it will help them help those struggling with it. I know that through sharing my story I can create a compassion and empathy that cannot be found in psychology textbooks. I know that through honesty I can help them reach out to just one more person.

When it comes to the world outside the conference room I am not always as aggressively vocal about my deepest darkest moments. At least not right away. My way of sharing stories outside of the classroom or conference room is through honest answers to often simple questions. People may ask things like, "Why did you take a quarter off in your sophomore year?" And instead of running or come up with a lie on the spot, I simply tell them the truth: I had to take a medical leave because I was suffering with a severe depression and was eventually diagnosed with bipolar disorder. This usually turns into a question and answer session, "what is it like to have bipolar disorder?" "what is it like to be hospitalized?" "tell me about your medications". And often times, if it doesn't produce questions I often tell them flat out, "Feel free to ask me questions, I'm not embarrassed".

Oftentimes in the "real world" of offices or classrooms or living-rooms people may not bring up mental health conditions, and if they do, the fear, misinformation, and misunderstanding is enormous. It is in these times that we (those who have a mental health condition, and those who know anyone who does) need to speak out. Be brave when you hear, "Oh my god she was like soooo bipolar! That's like the worst roommate to have!" Be brave and say, "that must have been hard for you to live with someone having such a hard time. I hope that you provided her with the support she needed. I am bipolar, so I know it's so hard to foster healthy relationships when you're in an episode..." It is in these moments when you give them the "she doesn't know what she's talking about" and try to inform and not get mad.

I get mad about injustice. Alot. I get mad when people make fun of others for any reason. When people are unfair or unkind to someone they know nothing about. But it is important that we don't get mad. If we want to make a difference we must be the  stronger man (or woman) and simply inform. Tell your story: Let people see the face of mental illness and know that it looks just like everyone else, just like theirs. Provide information: Help people find resources to get better informed. Let them know how many people actually deal with mental health issues.

Here are some of BringChange2Mind's thoughts on what you can do to make a change:

Speak Up

The general population is largely unaware of the number of people with mental illness; because of this, the stigma of mental illness is a “hidden stigma.”

• Strong evidence shows that contact between the general public and people with mental illness may be an effective approach to significant and lasting attitudinal changes.

• The stories and experiences of people who live with mental illness, and corresponding stigma, may have the greatest impact.

• People who come out about their disease find significant release in no longer having to keep it a secret. This reduction in stress can aid in treatment, as well as improve relationships, job satisfaction and support from family members.

• Unfortunately, coming out may lead to social disapproval and possible housing or employment discrimination. However, being open about your disease may allow you some protection against discrimination through the Americans with Disabilities Act (ADA).

• Strength in Numbers: The World Health Organization has done research that suggests that nearly half of adults will experience some form of mental illness in their lifetimes. The more people realize that people affected by mental illness are “just like me,” the easier it will be to live with any form of mental illness.

Watch your Language

• Refrain from using terms like “crazy,” “nuts”, “psycho” and “lunatic”.

• Say someone “has schizophrenia”, or “has bi-polar disorder” rather than calling the person a “schizophrenic” or “they’re bi-polar.”

• Although correcting someone else’s use of language might not be a good approach, you should always try to watch your own. 

So these are my thoughts. Now go out and make a difference!!

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.)