It’s true that I have frequently thought of Elyn Saks, John Nash, and Robert Pirsig as the heroes of schizophrenia, but as I was thinking about it today, they are great examples of people with schizophrenia who have contributed a substantial amount to the world, but they aren’t my heroes. The true heroes of schizophrenia are the people who live with severe symptoms every day and manage to write, have a relationship, cook, sew, tell stories, laugh, and joke.
When I hear voices, I get lost in a world that no one else can reach. People who hear voices every day that manage to continue to go out in public, talk to others, write, create, paint, etc., those people are amazing. There are also people who are medication resistant who have to live with all of the severe symptoms on a regular basis. These people, the ones dealing with the worst of schizophrenia, at all times, are the people that deserve to be held up as heroes.
It is great to be exceptional, the one-in-a-million like Saks, Nash, and Pirsig, but few of us can live up to those standards. The real hope for me, as I understand it today, comes from the people who persevere while living with debilitating symptoms. Those people are remarkable.
I do not include myself in this category of heroes. I have symptoms every day that interfere with my ability to work, ability to drive, to travel, to socialize, but I still feel like I am lucky because I don’t hear voices on a daily basis and I don’t hallucinate on a daily basis. I have to white-knuckle myself through anxiety and paranoia on a regular basis but…
I am not going to downgrade my own experience here. I am just going to say that those people who are medication resistant or who are experiencing voices or visual hallucinations and still manage to have the will to live are the people I look up to.
Schizophrenia is tough. It is hard. It is brutal, and you have to be fierce to live with it. There are times that I am so scared and so anxious that I think I am going to die of fear. I have to walk through those times alone. My husband can comfort me, but he can’t take away the feelings from me. You have to be a warrior to live like that and then the next day set that experience aside to feel joy, or to write, or to laugh, or to be happy.
I always say that a diagnosis of schizophrenia is not the end of the world, but it is the beginning of so many things that will probably be the most difficult things someone will have to do. And doing difficult things on a regular basis can make you tired, but then there is no time to be tired because you always have to be ready to take on the enemy.
So, those people who live with the most severe symptoms every day, are my heroes. I’ll just leave that sentence the way it is, right there, for everyone to see.