Wednesday, March 24, 2010


It is hard to explain how my mental illness impacts my life. I can act so normal, and have so many normal experiences, but the illness is real and it doesn't go away. I've created a sanctuary from it, I protect myself and do not suffer it that much, but every now and then I try to do something that is so easy for people without an illness, and when it devastates me, I get a signal. A sign that my mind isn't like others.

Last Saturday I had a morning appointment to work on a church pictorial directory with two other women. Only one participated, we did layout work that involved cropping photographs. I worked from 12am on Saturday until 3pm. Three hours. Three hours that completely drained me. I knew that if I wanted to go to Church on Sunday morning I would have to spend all day Saturday recovering from the activity I participated in Saturday morning.

Essentially when I got home Saturday afternoon I stayed in bed the whole day. Watched two movies. The first movie had some scenes of domestic abuse and I was in a state of tears watching most of it. Emotionally weak, easily influenced, no place in my mind to hide. Simply raw to the world. The second movie was a romance and did not really affect me.

I told my husband that after the first movie I was tired but no longer in emotional pain like I had been after participating in the church activity. So my recovery had stages. The first thing to heal from was an over stressed mind that made me feel to be in pain. The second thing to heal from was the weakness that my mind suffered after healing from the pain.

Saturday the weather was beautiful, warm in the middle of March, and everyone in their right minds was going for a walk. I could not go for a walk because I could not bear to be overstimulated by the wide expanse of blue sky over my head or the houses and people that I would have passed while walking. When my mind shuts down I can't really even walk, I don't have the will power to move.

I am not part of the 25% or even 60% that recover from the onset of a schizophrenic type illness. I live by my wits, this means, I don't provoke the illness and bring on painful symptoms. But this means I live a simple life and a withdrawn life.

The people in the recovery movement don't understand one thing. Anyone can recover if they simplify their life enough. If they cut out experiences that people without a mental illness count as normal. Recovery means learning that watching t.v. hurts less and is less stressful than interacting with other people. Recovery can mean that you learn you will never work a full time job and that you live on disability benefits or on the kindness of family. Recovery may mean that you understand you will never have a sexual relationship again - it is too much of a drain on your sanity. Recovery means downsizing your life drastically. Recovery means discovering how fragile you are and what your limits are. You then live within these limits. Exceeding the limits means further breakdown and more hospitalizations and probably more medication.

No work. No sex. A lot of television or walking aimlessly around town. Live safely. This is recovery for some schizophrenic people. They aren't lazy and they aren't unmotivated. They are living within the boundaries of how their diseased mind can function.

It pisses me off that the one activity that I did Saturday morning destroyed me for the rest of the day. I look back and wonder what did it. Was it the concentration needed to crop a photograph within an eighth of an inch? Was it the socialization I did with the woman who was working with me? Was it being in an environment that is not the safety of my own home? Or was it simply this; my mind is weak and unless I protect it by living within safe, predictable routines I will suffer the full awareness of diminished capacity.

I am in recovery from my mental illness but still my life is nowhere near what my life was like before the onset of my illness. And I'm not talking about having to have a career change. I'm talking about bizarre patterns of behavior, that mimic laziness, that I must participate in if I am to save myself from my illness. Most people would not call watching two movies in a row bizarre. But I do. Because I was capable of no other behavior. Any other behavior and I would not have been at my prime for doing the moderately difficult thing that I do on Sunday; go to church and write my blog. How many people know that what they do Saturday morning will determine whether or not they are up to doing an activity Sunday morning? Normal people simply do not live that way. They bounce back, they recover quicker, a nights sleep restores them fully. These are not truths for me. What I do one day has an impact on whether or not I can function the next day.

I rarely go to movies. I don't go to plays. I don't go to musical performances. I have my church groups that last about an hour. An hour of playacting normal. I can manage that. I have a peer support group one night a week that sometimes I return from enervated, sometimes sick. Never know whether or not that group will drain me. Life is dry and simple and safe so perhaps I can do what is most important to me; creative writing most mornings. My book. My life is stripped bare so that I can be a writer. It is a sacrifice. Currently this church project of the pictorial directory is interfering with my book. But the directory will be finished and I know that I will never ever volunteer for a church activity again. Lesson learned.

Walking the dog is a slightly stressful activity. Walking only me takes just an edge less concentration, less difficulty - I'm only responsible for myself. Who in their right minds makes a distinction between talking a walk and taking a walk with their dog? But for me such things matter. This is recovery - learning that you are not the same walking yourself and walking your dog. That the brain is stressed more in walking the dog. Because I must avoid stress, the dog doesn't get walked that often. Because I am worried about my physical health I take on the stress of walking myself, even when I am so sick that all I can do is walk with my head down looking at the pavement of the sidewalk.

I'm disgusted with the recovery movement. The people who are sickest have no voice. The people with a voice don't understand how different and blessed they are.

Yeah, I've seen recovery. I've seen a schizoaffective woman who cried almost every day stop, after five years, crying. And she managed to move from a group home to her own apartment. She's made some friends. She was a teacher but now she still cant do her own bills or own medication. But she is no longer crying as much, she's accepted her lot in life. That's recovery.

1 comment:

  1. Karen, I am sorry you are suffering. I want to both comfort you and challenge you to think differently. I do live a handicapped life and yet, for the most part, I am not suffering. I think the reason is that I fell so low that by comparison my present is like, if not heaven, then acceptable. I remember what it was like to not have the energy to be around people for long and now, I've set my life up that I just am not around people much. For some reason, I'm not lonely, though I do fall into some depression and anxiety, but that is a part of life for many of us.

    I believe that I was made to be mentally ill for a reason. It has something to do with attitude. I remember getting a button from a hardware store when I was very ill that said "Attitude is Everything." I hung it up in my bathroom so that I could see it every day. But I can't graft my attitude onto your life. We each have to rather blindly feel out way. It seems as if you have been in pain for a long time, but perhaps you make the pain worse by comparing yourself to the mythical "normal" person. My experience has led me to believe that at some point in all our lives we have our crosses to bear and, of course, the ultimate cross to bear is that we all will die. No one escapes that.

    You struggle, you suffer and yet you have many blessings. I admire you and your writing. Don't think that because you are in pain now that it will just go on interminably. Life is about change. You believe in a higher power. Perhaps there is some lesson here to learn. Sometimes we get the same lesson over and over again in order to wake us up. We are a rather stubborn species. I know that I was much blinder before I became ill. Yes, for a while, I was caught inside delusions, but still there was a path that led away from them and back to reality. I had to train myself to hold on to the positives in my life. It's too easy to get negative. It's still a challenge for me to stay positive, but I take up the challenge.

    Keep writing Karen. No matter how hard it gets or how negative you fell about the whole deal, writing is an affirmation. You are alive now and sensitive and vital and that is quite wonderful. I'm glad you are in the world. And thank you for leaving that wonderful comment on my blog today. You made me feel so good. Sometimes little things like a caring and perceptive comment can do much to make life bearable.



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