Control

normal-life

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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I’m Still In Recovery

Five years ago something happened to me which neither I nor anyone around me foresaw, I had my first psychotic break. Initially, in the months following my diagnosis of schizoaffective, I tried to gain control in a situation where I didn’t really have it. I thought if I could just understand what was happening I could gain the upper hand. So I read books, blogs, forums, and watched youtube videos about mental illness.

All of those things made mental illness seem like a temporary inconvenience which could be easily overcome and I bought into it. I thought I could just take my meds and everything would be easy peasy, that was far from the truth. Nothing I read prepared me for what I actually experience living with this illness.

To be fair I did not always follow all the advice I read. After I was comfortably back into my daily routine I tried my strength. By that I mean I went off medication, multiple times. This lead to periods of instability which were bad but not as disruptive as my inital break. I was still able to work and function and unless I shared my delusional thoughts no one was the wiser. But I did eventually concede that the medication was neccessary; the moment I realized I was a slave to medication was almost as heartbreaking as the moment I was diagnosed. But I learned and now I would not advise anyone to learn the way I did, the hard way.

Spending so much time fighting my paranoia and psychosis took focus away from my emotions; took away my view of my self as a whole being and I became disconnected from myself. There were times when I was depressed but I did not recognize it for what it was. I thought it was an organic thought that was just part of who I was and I just had to think more positively. When I would go off medication I would get bursts of positive energy which was another reason I would go off them. It wasn’t until a severe episode that I realized something was off with my emotions. That was three years ago.

Since that time I have been through a couple of therapists each who brought something valuable to the table. Each who have helped me realize that I am not just a schizophrenic but a person living with schizophrenia. It took me until this passed year to fully grasp that. I have been in therapy on and off since I was 19 (almost 30) and I have just recently learned the art of being aware of and managing emotions. My last therapist also made me aware of thought traps (black and white thinking, catastrophizing, mental filtering) all of which affect me day to day but I am learning to fight.

So much of the progress I have made recently was hindered by me. For a long time I was abusing otc sleeping meds, which I was told made my symptoms worse. For the longest time I thought it was bullshit. But when I recently stopped taking it my symptoms decreased a lot.

And so I’m still in recovery as both someone with a mental illness and someone who struggles with addiction. Things have not been easy but I’m ready for them to get better.

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I Worry About Complete Strangers

I’ve noticed this past year that I have become emotionally invested in the well being of perfect strangers. As someone who lives with a mental illness, more specifically schizoaffective disorder, I seek out others online with it as I don’t know anyone in real life who has an illness as serious as mine. One way I do this is by watching youtube videos.

It started out as curosity, “I wonder what would happen if I type in schizoaffective disorder.” I don’t think I expected complete strangers to record videos about their day to day struggles. When I first discovered these vlogs I spent hours watching them. I found I could really relate to their struggles and didn’t feel as alone as I did before watching.

Then one day, one of my vloggers disappeared. Their channel just ceased to exist and I became really worried. “Are they ok?” I thought. “Did they lose the battle?” That was the moment I realized part of me cares about these strangers.

I was completely oblivious to my emotional investment until some of them disappeared. After that I became conscious of it. I started to notice the anxiety I feel when one of my vloggers are struggling. The want to reach out and say “you can beat this.” Or “please don’t go off your meds!.” Or a thousand other things I don’t allow my fingers to type.

These strangers have made an impact on me. I miss these people and I desperately want them to be ok. I want them to live a well rounded life because I still haven’t discovered how to do it while managing this illness and if they can, maybe I can.

So if you are reading this and are struggling just know that someone out there is rooting for you. Someone who might not even know you wants the best for you even if you feel alone. If you are fighting the good fight I applaud you because this isn’t easy.

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Saying Goodbye

There are some people who come into your life and make such a mark on you that you cant imagine life without them. My mom likes to say people come into your life for one of three things: a reason, a season, or a lifetime. I have a separation looming and now im trying to make sense of it.

My therapist told me the other day shes moving and wont be able to see me anymore. I have gone through many therapists over the years and saying goodbye never hurt, until now. There were times when I wondered how attached I was to her or if I was at all and I convinced myself I wasn’t, this was clearly self deception.

My mom’s saying always seemed like some bullshit inspirational nonsense someone created to make sense out of chaos; but now I can’t help wondering if maybe this saying is true. Part of me feels like my therapist definitely came into my life for a reason.

When we started working together last September I was entering a new phase of my life. I had just started a new job and since I lost my old insurance had to change both my therapist and psychiatrist. I still remember the first session we had together, she seemed tough and no nonsense and I questioned if we would be a good fit but I stayed and im glad I did.

Over time I got to know her as a therapist and although she definitely has that no nonsense attitude there is so much more to her. Shes warm, perceptive, honest, empathetic, and very invested in the well being of her clients. She’s the first therapist I had who I felt both understood and genuinely cared about me.

She shared in my victories. When I achieved something there was usually a smile on her face, I could tell she was happy for me. When she spoke of my progress she seemed proud and excited for me.

She gave me the sympathy I oftentimes forget to give myself. When I was feeling down or depressed she would remind me of my strength and strengths. If I was internalizing something that wasnt my fault she was there to remind me that some things are out of my control and have nothing to do with me. She softened the blow of my negative self talk and helped me to develop a more positive inner voice. She saw the good in me which enabled me to see it.

She helped me form stronger bonds with those around me. When I first started seeing her I kept a lot in and very rarely shared how I was doing or my struggles with my circle. She encouraged me to and with some help from her I was able to. Thats in addition to the obvious fact that being able to be vulnerable with her gave me the comfort to do that with others.

She was no nonsense. Sometimes you need people to be frank with you. To tell you what you need to work on. To highlight your maladaptive habits and behaviors. She was great at doing this and not in a rude or brash manner. She made things real for me in places where I had on binders.

She was vulnerable too. Her concern was sometimes framed in terms of how things would affect her. This admission that I meant something to her as a client made me feel like she was invested in our therapeutic relationship which made me feel comfortable  investing more.

Her skill at reading me and situations in general was impeccable. She would oftentimes throw something at me to see how I felt about it. Explain her percetion of my thoughts or feeling and she was almost never wrong. Never have I had a therapist so great at understanding me. When I would tell her of a situation she was quickly able to pull apart and analyze it. A skill which was a godsend to me.

She encouraged me realistically and honestly. This is something you should probably expect most therapists to do but I have never experienced it. I could tell that when she was encouraging me it came from a place of genuine belief in my abilities. I was not being “gassed” up, she really wanted to see me do well and believed I could.

She made me realize im human. At times I would share with her something I felt or did not feel that I thought was abnormal. She helped me contextualize and normalize me feelings. This made me both more confident and comfortable with my feelings. Through that work I realized that i’m not odd, but human.

I could go on and on about how great she was. It got to the point where others around me were asking for her name and contact number, they saw my improvement and thought that they or someone they knew could benefit from her treatment. Never in my life have I felt more capable.

She came at a time when I desperately needed help. When my life was reaching an unsustainable point and I wasnt sure how much longer I would be alive. My future doesnt seem as hopeless and bleak as it once did.

She came for a reason. To show me that I did not have to live the unsustainable life I was living. That I did not have to suffer in silence alone like I had been. That its safe to say im not ok and to ask for help.

I hate goodbyes, always have. At least when I am deeply attached to and care for the person, place, or thing I am saying goodbye to. To be honest, I havent formed any new attachments since college. I have gone almost a decade without something new penetrating my heart.

But my therapist has achieved this feat. I am very sad to be saying goodbye to her. Never in our time together, since I felt comfortable  with her, did I see a time where she would be gone from my life. She’s become an integral part of my life, something that just seems an inevitable part of my week.

“Life is a series of kisses and goodbyes,” another one of my moms sayings. I’m not ready to say goodbye but I have no choice. Im thankful to my therapist for so many things. But im most thankful to her for showing me I could care about and form attachments to new people. An ability I convinced myself I had lost.

I guess I have no choice but to move on to the next kiss, hopefully its as sweet.

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