Writing Your Own Story

Last Saturday, I attended a workshop called “Narrative Medicine: Unpacking and Authoring Our Stories” at Kalamazoo College’s Arcus Center for Social Justice Leadership, facilitated by the Icarus Project. It was geared particularly towards individuals with mental illness. We discussed labels, who we get them from, how they are used, and how we can change the way that our personal stories are told in order to better represent us.

I have been rapid cycling between depression and mania for the past several months, something which I do not normally do. As a result, I have not taken the best care of myself and I have been isolating myself because I don’t want people to see me this way. I know that isolating is a terrible idea. Anyway, attending this workshop was a big step for me and I’m glad that I went. Although I didn’t brush my hair or shower, I did put on a nice outfit. I didn’t talk to many people because I’m experiencing confused speech and self-consciousness, but I did contribute to the group discussions.

First, we looked at the labels that we have been given during our lives. The facilitator asked us to raise our hands when we heard a label that we have either been given or that we personally identify with. Some of the labels: anxious, depressed, too sensitive, moody, difficult, dramatic, complicated, angry, irritable, aggressive, autistic, bipolar, troublemaker, irresponsible, flaky, lazy, borderline, paranoid, antisocial, immature, shy, broken, clingy, needy, and narcissist. Just about everyone in the room raised their hand for “anxious,” and the facilitator listed three different interpretations of anxiety. Her point was that there is more than one meaning for the word.

Next, she asked us to write a list of our personal labels and include where we got them from/who gave them to us. I would like to spend some more time on this, but I found the activity to be eye-opening. A lot of the labels associated with my mental illness were given to me by my family and peers when I was young. I was told that I was moody, too sensitive, bipolar, antisocial, and shy early in my life. Some labels were given to me in my adult life by medical professionals, significant others, co-workers, and peers: anxious, irritable, lazy, clingy, needy, flaky, depressed. Others are core beliefs that I attached to myself: broken, difficult, dramatic, complicated.

After taking some time to write these things down, we came together as a group to discuss our thoughts. I shared that the majority of my labels were given to me when I was young. The facilitator asked if I still identify with them (I do). This is something that I will ruminate over. Other thoughts from the group:

  • Many of us didn’t list any “positive” labels.
  • There’s power in labels. They control our behaviour. We eventually believe them even if they’re not true to us.
  • We may be quicker to internalize labels due to certain circumstances.
  • Can we escape labels? Who can do this? Some are easier to drop than others.
  • Powerful people label others despite their lack of personal understanding.
  • Being called “needy” by your significant other stifles your expression of love.

Next, we learned that nobody is capable of telling your story better than you. The facilitator read Mary’s story. The story described Mary’s physical, medical, financial, environmental, family, educational, mental, social, and employment situation. Here’s Mary’s full story: Mary’s family has lived in chronic poverty since the sources of employment in her rural town were closed down and most people in town lost their main source of income. Therefore, Mary has been poor all of her life. Despite the lack of wealth, Mary’s family is very loving and supporting. They make a point to get together at least twice a week and they share a meal, watch a movie, have conversations, or play board games. Mary’s town was deeply impacted by environmental trauma. For most of her life, Mary drank poisoned water that has given her a chronic illness. Because of lack of resources, Mary is not able to get the medical help she needs. She missed school so much that she dropped out of high school. This made Mary very lonely and depressed. Mary was embarrassed and started progressively isolating from her peers until she hardly had and friends left. Mary spends her days with her nieces, whom she enjoys very much, her next door neighbor, or her pets. Because of the unpredictable nature of her condition, she is not able to remain employed. Mary has been unemployed for the last decade. She is very angry about her lack of ability to hold down a job because of medical reasons and often lashed out at employers and co-workers. Mary eventually stopped leaving her house except for a few social outings every week. Mary has been receiving social benefits that allow her to meet basic food and housing needs.

Then, the facilitator read the town mayor’s version of Mary’s story. The mayor wants to make budget cuts to social services because he thinks that people are lazy and abusing the system. The mayor’s version of the story only included the facts that Mary has been poor all of her life, she dropped out of high school, has been unemployed for the last decade, previously lashed out at employers and co-workers, and has been receiving social benefits that allow her to meet basic food and housing needs. The mayor’s story doesn’t paint the full picture. Mary’s doctor has another version. After listening to the exact same story from Mary, they write down that she has been poor all of her life, has chronic illness, dropped out of high school (which made her lonely, depressed, embarrassed), isolated from her friends until she barely had any left, is unemployed and angry, lashed out at employers and co-workers, and has stopped leaving her house. Again, this is not the whole story. Finally, the facilitator read Mary’s rich uncle’s version of Mary’s story. Mary is struggling financially, but her uncle doesn’t want to help her because: Mary’s family is very loving and supporting. They get together at least twice a week to share a meal, watch a movie, have conversations, or play board games. Mary spends her days with her nieces, whom she enjoys very much. She also spends time with her next door neighbor and her pets. She goes on social outings every week and she has been receiving social benefits that allow her to meet her basic food and housing needs.

This last section really stuck with me because I have seen firsthand what happens when someone else tells my story. I am the only person that can tell my full story, and the first step to doing so is to examine which labels are attached to me and determine whether or not they serve me.

Finally, we discussed ways to reclaim our personal narratives. Here are a few things that we came up with:

  • “My existence is resistence.” Just living your life.
  • Being seen in public spaces.
  • Using our voices (refusing to be silenced).
  • Finding/Creating/Supporting safe spaces, where you have permission to be fully yourself unconditionally.
  • Allowing ourselves to be vulnerable (within a safe space) in order to be true to ourselves and inspire others to do the same.
  • Finding/building community and standing together.
  • Art expression (shared is especially powerful).

The Icarus Project

“The Icarus Project is a support network and education project by and for people who experience the world in ways that are often diagnosed as mental illness. We advance social justice by fostering mutual aid practices that reconnect healing and collective liberation. We transform ourselves through transforming the world around us.” (quoted from their website)

I was not familiar with the Icarus Project prior to this workshop, but I’m happy that I discovered them. The workshop gave me a lot of things to think about regarding my personal situation, and I like that they provide great resources such as publications and handouts on their website.

The Arcus Center for Social Justice Leadership 

“The ACSJL is an initiative of Kalamazoo College whose mission is to develop and sustain leaders in human rights and social justice through education and capacity-building.” (quoted from their website)

I have found the Arcus Center to be a safe space that offers enriching social justice leadership workshops. Besides this event, I attended a workshop on self-care for social justice leaders and a film screening/discussion related to human trafficking, both of which provided me with a wealth of knowledge and resources. (Delicious) meals are usually served at their (free) workshops, which are listed on their Facebook page and website. Please note that you must register in advance in order to eat. I subscribed to their mailing list so that I don’t miss any announcements.

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I Found Some Hope!

Have I mentioned that I’ve been struggling with depression for the past month or so? I’m trying to avoid going to the hospital and it has been tough, but today I discovered a potentially helpful community resource.

My day started with 3 fillings at my dentist. With 2/3 of my mouth numb, plus my right eye, ear, and my nose, I sat in my car after my appointment and tried to figure out what to do for the rest of the day before dance practice. I had 7 hours to blow. I sat in my car for a good 45 minutes, basking in the sunlight on Michigan’s first warm spring day of the year and farting off my unfortunate breakfast choice, as I tried to decide whether I should drive home (a 30-minute commute) and sleep off the anesthesia or parade my crooked smile around Salvation Army, looking for deals on stuff that I didn’t need. I finally left with no plan, but then remembered that I had seen a mental health office on my drive in. I would pop in and see what they offered!

With a VERY wonky face, dental chair hair, and (probably) a faint eau de fart aroma about me, I walked into Pine Rest Christian Mental Health Services. No, I’m not Christian. But I am desperate and I would hope that my treatment wouldn’t be heavily peppered with religion. Anyway, the receptionist kindly informed me that their office only offers therapy, med management, and a substance abuse group. I’m looking for bipolar and/or depression groups and possibly partial (day) hospitalization. She made it sound as if the other local branch offered day hospitalization, so I drove there. I could have just called, but I have a stupid aversion to talking on the phone.

The next place was the same story, but they were kind enough to suggest the Elizabeth Upjohn Community Healing Center. So I drove there. This place was the same deal as the first, but with more substance abuse options, plus child therapy. Have I mentioned that every time I open my mouth to speak, the right side of my mouth and face doesn’t move? The reaction from the various people that I interacted with was pretty comical. Usually a look of slight confusion and then terror. Anyway, this time I was referred to the local DBSA  (Depression and Bipolar Support Alliance) chapter. I had to call :(. Nobody answered, but there was a message stating when their group meets (Mondays from 7-9 pm). I was really hoping to find something during the day, when my husbeast is not home with me. He works a lot of hours and I usually only get to spend 3 hours per night with him + Sunday and sometimes I see him on his day off, depending on which day that falls on.

So, feeling like I was at a road block, I got on my phone and tried to see if there was a DBSA chapter in the neighboring county. I’m not clear on the answer to that, but I stumbled across the local NAMI (National Alliance on Mental Illness) chapter, which listed several support groups in my area for family members of individuals living with mental illness (a good find, although not sure the husbeast will ever be able to do it due to his work schedule) AND I read about the Recovery Institute of Southwest Michigan, Inc.

Sorry that this story has gotten so long! Here’s the point: this sounds like exactly what I need right now. The Recovery Institute of Southwest Michigan, Inc. is a peer-run non-profit organization for individuals that are embracing recovery. There are weekly peer support groups for substance abuse, addictive behaviors, mental illness, for veterans, and for members of the LGBTQ community. There are ongoing wellness classes such as “whole health action management,” tobacco reduction, writing about recovery, meditation, yoga, and even an “open studio” time, when people can play games, play music, and share skills with each other. There is individual peer support and recovery coaching available, as well as special events and activities like computer lab, reading and writing tutoring, access to the local YMCA gym and pool, movie screenings, workshops, luncheons, and field trips. All of these resources are available to me for FREE, thanks to individuals like myself who volunteer to make the Recovery Institute work.

I picked up the March and April schedules, and I have so many good options! And all of them are during the day. I look forward to embarking on this new leg of my recovery. I’m sure that I will meet some great people and learn a lot about myself and others.

Do you participate in any groups to help you manage your mental illness? What are you doing on your own to manage your symptoms?

Dr. Copeland’s Concepts Essential to Self-Help

Concepts that are essential to self-help, according to Dr. Mary Ellen Copeland:

  1. There is hope. It is only when you feel and believe that you are fragile and out of control that you find it hard to move forward.
  2. It’s up to you to take responsibility for your own wellness.
  3. Education is a process that must accompany you on this journey.
  4. You must advocate for yourself to get what it is you want, need, and deserve.
  5. Support is essential.

Source: Copeland, M.E. (2002). The Depression Workbook: A Guide for Living with Depression and Manic Depression (2nd Ed.). Oakland: New Harbinger Publications, Inc.

I wish that someone had told me these five things the very first time that I experienced symptoms of bipolar disorder. I kind of want to have them printed on a card that will fit in my wallet so that I can remind myself of these concepts when needed and even share this knowledge with others that may benefit from it. I was going to talk about which aspects I think are the most important, but they are equally crucial. What do you think? Is there anything that you would add to the list?

Back at it

I don’t have a stellar track record of keeping blogs that aren’t related to belly dance going, but I’m going to do my best to not delete this one. Stick around if you want to read about my life with bipolar disorder. I’m just bouncing back from a breakdown, so I’m going to start right where I’m at: working my way through The Depression Workbook: A Guide to Living With Depression and Manic Depression by Dr. Mary Ellen Copeland, which I snagged from Barnes and Noble two weeks ago.