Opening Up: Is the risk worth it?

I’ve been at this mental illness thing for a fair bit now and Im starting to wonder if maybe things were better when I kept my struggles between me, my therapist, and internet strangers. I had a therapist about two years ago who encouraged me to let the people around me in as a salve to my loneliness and lack of support. I had been lonely, alone in my struggle for years, so her advice gave me hope. Hope for understanding, help, support, and to basically not be in the trenches alone. But here I am two years later alone in my struggle. 

The thing my therapist, or I should probably say I missed, is that I had my reasons for keeping these people at arms length and there was also a reason they didn’t probe; they weren’t equipt to handle what I experience. But I thought maybe I had faulty thinking or maladaptive relationship habits, so against my better judgement, I let them in. 

The end result of all this was the loss of two friends and struggling to accept family for who they are because I really want to be done with them. I’ve been mocked, had my intentions questioned, been judged harshly, treated to a healthy dose of ableism, all the while struggling to keep my head above water. I’m already down and the kicks keep coming.  I have honestly been struggling with feelings of bitterness towards neurotypical people in general. 

But I see and acknowledge my mistake. I opened up to people who were not safe. I was so lonely I forgot my boundaries. Opening up, being completely honest, comes with a risk and I’m not sure its worth it. 

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Consider The Coconut!

While listening to my Pandora radio station “RENT,” which has seed songs from all my favorite musicals, I heard the most inspiring song called Where You Are. This song is from the Disney musical Moana. I haven’t seen the full movie but I did catch about twenty minutes of this movie and I do not believe the message of the song is the message of the movie. But, I think think the song makes a very valid point which I am just learning. 

The background story to this song is that the character Moana has a fascination with the sea but her father is trying to convince her the island is the only place she needs to be in order to find happiness. Here are the lyrics that caught my attention:

There comes a day
When you’re gonna look around
And realize happiness is where you are

Consider the coconut
The what?
Consider its tree
We use each part of the coconut
That’s all we need

We make our nets from the fibers
The water is sweet inside
We use the leaves to build fires
We cook up the meat inside

For year I have been looking for happiness, for change, outside of myself and my circumstances. “If I had a different job” “if I had new friends” “if I moved to a new city” “if I made more money” etc. Always grasping at something, always raising the bar, and the changes never brought me lasting happiness. So I’ve realized I’ve got to find happiness where I am, in my current circumstances. 

Its cliched but true, happiness really does come from within. I’ve been meditating, practicing mindfulness, integrating buddhist ideals into my life, and working on dialectical behavioral thearpy; these things together have helped me change my thinking. They have helped me find contentment and acceptance in my circumstances. This contentment has led to gratitude and spontaneous moments of joy when doing something as mundane as walking down the street. And while I’ve only been doing these things for a couple of months, I have observed and felt a real change inside in how I feel and think which keeps me motivated to keep going. 

Lets make the coconut a metaphor for ourselves, our minds, feelings, and spirits. If you introspect, contemplate each part, listen to them, you will find that all you need to be happy is inside you. 

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Self Acceptance

I have been looking for acceptance and understanding in all the wrong places. This is a realization I’ve come to recently, like today. For years I thought, “if i could just find my tribe” I would be complete. Thats whats crammed down our throats by society. In countless teen movies and tv shows there is a trope where a misfit finds a boyfriend, friend, or group of friends and becomes their true self. Or has a dysfunctional family that comes together and understands each other eventually. This even plays out in adult dramas, comedies, and rom coms. The message is clear, in order to become self actualized you need other people to make you whole. 

And so, I fell into the trap. I have been looking outside myself for people to make me whole since I was a teen. I thought it was normal to look outside yourself for acceptance, love, and understanding. I looked to family, then to authority figures, then to friends. I looked online in forums, chatrooms, dating sites, even hook up sites. Looping around and circling back within all those categories. And I always came up short. 

I wanted what pop culture promised, someone who truly understood and accepted me flaws and all. I had been hoodwinked. I mean maybe it is possible but not in my experience so I have been forced to turn inward. To give myself compassion,  understanding,  and love. 

I spend a lot of time giving openly and outwardly to other people compassion, love, and understanding hoping to get it in return, but I haven’t been giving it to myself. Today I make the decision to treat myself the way I treat others. To become my own tribe. 

“You yourself, as much as anybody in the universe, deserves your love and affection” -Sharon Salzburg 

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For the past two weeks I have been taking a Mental Health First Aid class. Today was the final class(I received my certification, woo!) and before we took the quiz for certification we covered psychosis. Naturally, as someone who suffers from psychosis my ears perked up and I sat up a little straighter interested to hear what the instructor would say about the topic. I was also on the look out for stigma or other problematic statements or ideas. Thankfully, the instructors and the students were relatively understanding, and the discussion was constructive and informative.

One thing the instructor said really struck a cord with me and inspired me to write this blog. The statement was something like this:

“People affected by psychosis are often very intelligent. They had put together lives and high aspirations prior to the onset of psychosis so many of them feel shame that they have lost control of their lives.”

This is the story of my life. My illness started when I was in college, it was my Junior year in fact. I was close to finishing my degree and had hopes of going to grad school, I was actually in contact with a few. That summer I started to experience psychosis and went home. Things went back to normal for awhile after I got home and when I got my first place and was making positive steps in my life to get back to college, I had my first psychotic break.

This has been my life for the past eight years. I take a few steps forward but eventually things spiral out of control and I have to start over again. Its gotten to the point where I’m considering using supportive social services because at the place I’m at right now I don’t know if I can handle going back to my full time adult responsibilities so soon after my last set back in November. I feel ashamed, I feel broken, I feel scared. I don’t know how my life has become what it is.

I used to proudly wear my badge of high functioning but now I don’t even know if I deserve it anymore. I get that functioning isn’t static, that people need more support during some periods of their lives than others; but, it still hurts to admit that maybe I can’t hack life at the moment. I’m constantly chasing normal but it continues to elude me.

Even with all that though I’m hopeful. The statements made by that instructor made feel like someone gets it. My family and friends may not understand but there are people out there who do. People who understand exactly what I’m fighting for and why I keep going. People who understand exactly the beast I’m fighting and how hard that can be. People who see that the life I’m living was not the life I envisioned for myself and still see my dignity as a human being even when I’m at my worst. It helped relieve me of some of the responsibility I feel for things I have no control over. It helped me realize I was carrying around shame and helped unburden me of some of it. They say words are powerful things and you never know how your words will touch people, even perfect strangers. That educational statement touched and validated a part of me I didn’t know needed to hear that.


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Letting Go And Letting In

About two years ago I wrote a blog called I’m Letting Go. This blog was about my father’s side of the family and the anger, sadness, and resentment I felt towards them. After I wrote that blog I felt free. Writing about my feelings was cathartic and really helped me process and release them. Once I let go of those feelings, I also let go of the hope I had for a meaningful relationship with them and just kind of took everything less seriously. When I initially wrote “I’m Letting Go” I fully intended to break off contact with them; But for some reason, probably because I love them, I decided not to go with that idea.

My father’s mother is nearing the end of her life. She’s started having visions of Jesus and dead relatives. My mom has worked in nursing for years and calls this sun downing and she has told me countless stories about dying people passing shortly after experiencing this. I’m an atheist so I believe this is all caused by chemicals in the brain but I do realize lots of people experience this before passing; so when my aunt called to tell me this is caused me pause. I hadn’t seen my grandmom in ten years and I had to decide whether or not I could live with myself if I never said goodbye. My grandmom has been sick for years and my friends who no longer have their grandparents have been telling me to go forever because I would regret it if I didn’t. I wasn’t sure if this was true but I decided to err on the side of caution.

So I broke my ten year streak of not seeing my family and flew down for a couple of days. I started a blog while I sat at the airport waiting for my flight but boarding started and I forgot all about it. Here’s the bit I wrote:

“Right now I’m sitting at the airport. I’m flying to see my grandmother who will probably pass away soon. I’m not sure how I feel about it, I didn’t even know if I would go see her until yesterday. It was a spur of the moment decision. My feelings about people are complicated. Sometimes I feel like I don’t care and other times I care too much. So I always have to remind myself that although I’m not feeling much for the person in the moment, those feelings will come back.

I’m full of anxiety at the moment. I haven’t seen my family in almost ten years and I’m not sure how to interact with them. I don’t even know if I will be able to interact with them comfortably. My impulse at the moment is to cancel this trip, go back to the comfort and isolation of my apartment and just live with the fact that I never got to say goodbye to my grandmom”

I was full of anxiety. I wasn’t sure what my family would expect from me but I was confident I wouldn’t deliver. The last time they saw me I had not yet developed schizoaffective disorder or social anxiety so I was worried I would be awkward and weird, definitely not the person they remembered. But I boarded the flight and when I landed I had a couple of texts from my aunt. They went “Good morning, was your first flight on time?” Then “Yeah! I see you’re in the air I’m following you on flight tracker!” Then “Everyone is really excited to see you!” When I read those texts I felt a warmth rise in my chest and I kind of forgot my anxiety.

After my connecting flight, I landed at my destination and my aunt picked me up. We still talk every couple of months so it wasn’t really awkward being trapped in the car with her for two hours but it was good to see her in the flesh. What was awkward was phone calls she got that she answered with her car. Why? I wasn’t sure if I should speak or not lol and on one call her best friend referred to me as “the baby.” THE BABY?! I’m going on thirty lol.

Anyway we went straight from the airport to the hospice so I could see my grandmom. She didn’t recognize me but she did say I looked like a member of my grandpop’s family. When she realized who I was she was shocked but happy and that made the trip worth it for me.

I won’t  go into detail about everyone I saw because you probably don’t care but I saw most of the people I intended to during my brief visit. And although there were times where I got anxious and didn’t have anything to say, nobody treated me with anything but love which made me rethink the blog I wrote. My mom had told me for years that if I physically went down there things would be different then how they seemed over the internet or on the phone. And like most things she tells me about relationships and family that I balk at, she was right.

I think my conversations with one of my cousins drove home this point. She said to me on my last night there, “I wasn’t sure how to take you.” I think this was a problem on both ends. I wasn’t sure how to interpret their behavior and they weren’t sure how to interpret mine. But I interpreted pretty much every action that irritated me as being done out of malice. The short conversations, the lack of communication, things I heard by word of mouth, etc. All caused me to feel unloved and rejected even though that was not necessarily the case. That is not to say that I did not have the right to be angry about some of the things they did but I drew the wrong conclusion from those behaviors. I have several thought traps I fall into which I am working on in therapy, these thought traps were a big contributor to my feelings of rejection.

But after spending time with said cousin we met each other where we were and reconnected on a new level. When I boarded my first flight on my trip home, I was reduced to tears. I really did not want to leave my family so quickly. My cousin confessed to me she cried like a baby on her drive home. I scheduled a three day visit, one full day, two half days, and that was not enough. Things kind of went back to normal about a month after I got home communication wise, but now that I have the experience of physically being with them, I know its nothing personal and is just the way they communicate.

Letting go of my feelings and expectations were a big contributor to this experience. Had I held on to all the negative emotions I was feeling I would never have went down and experienced the healing that I now feel. I’m now able to let them in again. I was in crisis not too long ago and actually called some of them for support and guidance and they were there for me as best as they could be.

SO I guess what I’m trying to get across in this blog is that sometimes we need to just release the past or how we perceive events and give people a chance to show us who they are in the present. I don’t mean this in a naive, “love your enemies and let people treat you like crap over and over again” or “forget the past” way. I think sometimes we need to be cautiously experimental. This visit was my litmus test for future contact. If I never gave them a chance to show me different than what I had built up in my head I would have kicked people out of my life who genuinely love and care for me.

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Doing Whats Best For You

I started my current job a year ago. It was my ideal job, well not exactly ideal, but it contained elements of the type of job I envisioned myself in. I always wanted to work in an large corporate office setting and this job gave me that opportunity.

Things were rocky when I started here. I wasn’t used to being in such a busy environment with so much going on around me. I was able to focus and do my job but I left every night feeling suicidal. This was caused by the stress of dealing with the symptoms that come along with schizophrenia.

It was important for me to make this job work though. I had something to prove to myself and to the world. So I strapped up my boots and forced myself to make it work at the expense of my mental health. Why? Because I have this notion that accommodating my illness would be giving up and giving in. I’m starting to think rethink this though.

In order to cope at work I’ve had to go up on the dose of the medication I take several times. It makes me able to stay calm in the busy environment but I feel overmedicated. Not only that but going up on the medication did not really solve the fundamental problem which is that I’m so overwhelmed by the environment due to my illness that I can’t function. No amount of medication will solve that problem. Sure, I can do my job but at this point I’m so mentally drained that I feel like giving up on life. And so I think it’s time for me to find something less stressful for me.

It’s taken me a year to reach this realization. I was so determined to be “able” that I’ve sacrificed my own well being. I’m starting to learn that the life I want may not be the life that is healthy for me to live. People have always pushed me. I have always been hard on myself, but this time I’m going to give myself kindness and understanding. I’m going to do whats best for me.

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Working While Mentally Ill

Working can be a complicated dance for someone with a mental illness.  The corporate world wasn’t designed for people like us and many of us struggle to perform in ways that most people take for granted.

When I was diagnosed with schizoaffective disorder I worked a really laid back low stress job. I was a doorman/front desk on the overnight shift at an apartment building. This worked well for me for years because I worked alone, had very little contact with management, and very little contact with people in general. I spent all night watching movies on my laptop or surfing the web. When I was symtomatic it was easy to hide and easy to work through because I was basically by myself for eight hours, it was like being at home. However there were time I struggled even there.

There are a lot of things that go on in the mind of a schizophrenic that make working difficult. When I left my job at the apartment building I started working at a hotel as a front desk agent/night auditor. One of my biggest struggles working there was teamwork. I have trouble working with people because of my schizophrenia. The distrust of people I feel coupled with paranoia makes small seemingly innocuous things into distressing events. For example, we all have lazy coworkers, people who don’t pull their weight. As a night auditor it was my job to close out all transactions for the day and start the next business day. Sometimes my co-workers wouldn’t finish their work and would instead leave it for me. I had no choice but to complete it so I could do my job and close out the business day.

When that would happen my mind would bypass the lazy explanation and I would instead take it personally. When the left over work came with an explanation such as a busy shift I would think they were lying to me. I would get worked up both for believing they were lying and the fact that they thought I was stupid enough to believe the lie. Then I would start to wonder what they say about me behind my back. The were many different situations that could set off this line of thinking. My mind constantly creates and looks for personal slights and attacks. This makes forming bonds or a good working relationship with coworkers difficult because you’re always on the offensive. You are constantly questioning their motives and so their is no firm foundation on which to build a relationship.

Not having a good relationship with your coworkers can make work seem like an unfriendly place. Because I was not really involved in the social aspect of my work environment I had no allies and no buffers against my paranoid thoughts. If I thought a coworker was trying to attack on in some way I was more inclined to believe it because I didn’t really have any positive interactions to compare it against. I couldn’t go “Susie Q wouldn’t say something like that we’re cool.” So I felt disconnected from the workplace and coworkers. I came in and did my job but I didn’t really feel like I belonged there or that I fit. Feeling that disconnection further fed my paranoia and I never really felt comfortable at work.

Another thing that I struggle with in the workplace is consistent work performance. This is mostly due to my mood disorder but my schizophrenic symptoms play a part as well. When I’m depressed its really hard for me to care about my work because in the moment I don’t even care about myself. If I’m suicidal I’m probably not going to be concerned with productivity and giving 100%. Sometimes I have moods that are largely characterized by anger mixed with anxiety. If something at work upsets me during this period I may intentionally do a bad job to get back at whoever upset me, usually management. That anger can also set off impulsive and careless actions. Giving a consistent effort when you are dealing with shifting moods can really be a struggle and sometimes giving your best at your worst wont be enough. Taking time off is also an issue here, sometimes I need a day off to refocus and heal but taking too much time is frowned upon and you are looked at as lazy.

Working when you are experiencing symptoms is not easy. At my current job I work in a cubicle in a big office setting. There are a always a lot of people around and that, at times stresses me out. If i’m having a particularly bad day with my paranoia just the fact that people are walking around can trigger my anxiety. I feel like they are looking at me. All the constant talking, yea those conversations are about me. When I first started this job I didn’t know if I would be able to hang on but I did and managing my symptoms in this environment has gotten easier but every day is still a struggle.

I have a habit of thinking i’m not trying hard enough. I’m never sure when to be kind to myself and when to tell myself to suck it up. I usually end up telling myself to suck it up. I’m not sure if i’m a victim of ableism or not. I keep trying because thats all I know how to do.

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