I don’t know who first said this quote, but I heard it the other day and I love it. And I can relate to it.
Understanding makes tolerance unnecessary.
Last week my life sucked eggs. Plain and simple. I just can’t sugar coat that.
There is a subject that I don’t like to talk about. Not because I am ashamed or embarrassed, but because of the stigma that society puts on it. However, when I started this blog I promised myself it would always be honest. So here it goes.
I have a psychiatric illness. Sometimes aspects of it hit me hard. I often feel misunderstood. But it is part of me that I can’t deny, as much as I wish it were different. Last week it smacked me between the eyes.
My parents tell a story about the day I was diagnosed with cerebral palsy. They were sitting in a doctor’s office and he told them, among other things, that I would need assistance with walking, I would have poor balance, muscle spasms, and stiffness, I would require consistent physical therapy throughout my life, and that there were many surgeries in my future.
After describing the various details, he concluded with some statement like “cerebral palsy is a horrible disability, but your daughter will be okay because she looks okay.”
It was 1970, and the concept of disability empowerment had not yet made its appearance in the world. The doctor was referring to the fact that I did not have a facial disfigurement or drool uncontrollably or some similar characteristic that sometimes accompanies this condition. In my 43 years of living since that day, I have pondered various aspects of his statement and what it means to me.
I absolutely do not deny that if I had features like he was suggesting, there are some aspects of my life that would be more difficult. I have witnessed the struggle that some friends of mine more significantly affected by CP endure when members of society stare at things they don’t understand. Nobody wants responses like that, especially when the reason for the ridicule is outside of their control.
But when I think about the doctor’s statement, I think of it more in terms of my psychiatric disability. It doesn’t show on the outside, but my psychiatric diagnosis means that my emotions are deregulated and can get really intense.
And I hate it. When certain buttons are pushed, I can respond with a rage so huge that it feels like it can encompass the solar system. I yell. I scream. I cry. And people react when I do that. They scold; they try to make me feel ashamed. They tell me they can’t handle it. They express disgust and impatience. And most of the time they leave the room, telling me to deal with my overwhelming emotions myself.
I don’t think there are words in the English language that can adequately describe how my fear of abandonment issues (that are a part of this illness) take prevalence over everything else during those times. The possibility of dying old and alone absolutely terrifies me, and whenever someone is angry with me I play out that scenario about a billion times in my head.
I truly understand that dealing with me when I am overly emotional is not easy, but here is the thing: this diagnosis is one of my disabilities and sometimes it makes me do things that are out of my control.
My responses in certain moments make me feel isolated, like nobody else on the planet is ever crazy except me. But everyone loses control of their emotions at some point, right? Nobody has a track record of being in control all the time. Nobody sane at least. 🙂 People hit a bad patch or have a bad day and it seems impossible to keep their emotions in check. I find great comfort in that somehow.
If we were in control of our emotions constantly, it would be hard to figure out what matters to us.
My favorite case manager once encouraged me to think of my psych diagnosis like an illness similar to diabetes. When someone has that illness, they can do all they can do to manage it. They can eat the right things and exercise, take medication regularly, go to support groups and gather great recipes. And sometimes, despite their best efforts, they have an insulin reaction because that is the nature of their illness. When Kristen, that case manager, moved to Philadelphia, I was devastated. She was really good for me.
I do everything I can to manage what I am feeling. I go to therapy, journal, give myself positive affirmations, snuggle with my service dog and get out in the sun when it is shining. And despite my best efforts, there are three or four days per year when I totally lose it. It used to be three or four times a day. I know that I have made major progress. I want to get it down to zero, but that is unlikely to happen. I will lose control of my emotions sometimes. That is just the way that it is.
Despite the belief of some people around me, when my emotions are overwhelming, I do not have the ability to turn them on and off like a switch. Does anybody think I would voluntarily behave in a way that makes people scold me and want to leave the room? Does anyone think that my behavior in those times makes me feel good about myself? If I could make it different, I would do anything in my power to do so.
The last few days have been a nightmare. A friend thought I blew her off on purpose, and as much as I tried to apologize for the way it came across and explain that it wasn’t true, she didn’t believe me. And that breaks my heart. She is not talking to me now. I did all I could do in that situation and it didn’t make a difference. On top of that, I had a very emotional conversation with one of my caregivers, and my current case manager made unfair judgments about my behavior in a situation before she knew the whole story.
When I reached my emotional limit, I lost it.
I am speaking volumes when I say that, when it happened, I was much harder on myself than anyone else was. And I bought into the idea that I should be ashamed. I thought I wasn’t an okay person. But then I realized something. Something important.
When I lost control the other day, I wasn’t okay. I was far from it. I was experiencing rage so huge it felt like it could encompass the solar system, and I reacted with characteristics of a disability that is outside of my control.
A few days ago, I had a response that didn’t look okay. But I was okay. I was okay before I lost it and after I lost it and every single second in between. I need to understand that, deep in my gut. And my hope is that others close to me understand it as well. Because understanding makes tolerance unnecessary. And understanding is the greatest gift anyone can give me.
Sometimes doctors are just plain wrong.