Tag Archives: heroes

Heroes Who Have Schizophrenia

29 Wednesday Nov 2017

Posted by in mental illness, schizophrenia, Uncategorized

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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.

The Homeless are Americans, too

09 Monday Oct 2017

Posted by in heroes, mental illness, schizophrenia, stigma, Uncategorized

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When hurricane Harvey hit and flooded many cities in Texas, Americans reached out to help one another. Then when hurricane Irma hit Florida and Puerto Rico a few short days later, Americans organized fundraisers, volunteered to help with demolition and repairs, and helped out in the various ways that they could. Musicians, artists and former presidents led events to raise money for people who lost their homes, were without power, and those that needed water and food.

Americans are generous and compassionate people.

What doesn’t make sense considering Americans generosity and willingness to help, is the ongoing homeless crisis in Southern California. Thousands of people are without shelter and have food insecurity. They are without access to medical treatment or clean water, or bathrooms. These people living on the sidewalks, back alleys, parks, and deserted lots of our towns and cities are Americans, too. Many of them are veterans. Many of them are mentally ill. What makes their plight less important to big-hearted Americans?

I guess many people believe the homeless are somehow to blame for their circumstances.  No one can blame someone for a tornado, a hurricane, a wildfire or an earthquake. But the loss of a job, alcoholism, drug addiction, and mental illness? I think we see fault in that and our purse strings tighten, our heart slams shut, we don’t identify with those who have fallen on hard times or are struggling with a mental illness or addiction. Who likes the confrontation of the wild-eyed man screaming profanities in the middle of the sidewalk in broad daylight? Who wants to look in the eyes of the dirty, matted hair woman as she asks you for the money to buy coffee, or pay for a bus fare, or help her get a meal?

I know it is uncomfortable. It is uncomfortable for me, too, and I can see myself in their fear or their screaming on the street. I know severe mental illness. I know psychosis. I know voices. I know being on the outside going in one direction while everyone else seems to be oblivious to you and traveling the opposite way.

Ironically, one of the largest homeless encampments – people living under blue tarps and in tents for blocks and blocks and blocks is approximately ten miles from Hollywood. Hollywood, where billions of dollars are made every year and millions are spent on award shows, dresses, jewelry, all the pageantry. So many of the celebrities in our country live within miles of this suffering, and yet, there are no special concerts, no special screenings, no events where the funds go to funding and finding a solution for all of the people that make a bed out of concrete, a bench or dirt.

I’m thankful that I live in a nation where people open their wallets during tragedies and help people that they don’t know. It is so uplifting that there are so many stories of everyday heroes when so many people are in need. I only wish we were all equally important and worth saving, comforting and lending a hand.

I Want My Heroes To Be Disabled

10 Saturday Oct 2015

Posted by in bipolar, heroes, hope, mental illness, schizophrenia

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Yesterday when I was browsing through Facebook, there was a video/article posted by The Mighty. The Mighty posted the video (that has gone viral) to ask its members how they feel about the video and how they want The Mighty to handle this type of information in the future (meaning do they want us (as members) to see kindness to disabled people as heroism, or should we expect kindness).

I didn’t answer The Mighty on Facebook, but I couldn’t stop thinking about their question and how I feel about it. Yes, the young man in the video did a very kind thing, but it makes me sad that he is being called a hero for being kind. Have we really become so self-centered and cut off from one another that a decent act between two human beings is considered heroism?

Also, he is being considered a hero for comforting a disabled man. This is one more example, in many, where people without a disability get to take credit for being kind to the “other” “lesser” “needy” And in this way I don’t like it at all.

People without disabilities are seen and heard in every public space and in every room. We see them as the lead characters on television. We see them in every job, and at every dance, and at every restaurant, and at every event. They are in magazines, and newspapers, they are in government and in the boardroom. They are not under-represented or invisible. They are not fighting to get access or be heard. They are front and center in our culture. They are always the heroes.

I want to see disabled heroes. I want to see someone with a mental illness win some of the prestigious writing awards and residencies. I want to see people in wheelchairs as CEO’s and covered on the front of major magazines. I want to see disabled entrepreneurs and artists. And I don’t want them to be great, because they are disabled (like isn’t it amazing that someone with a disability can do this? No.)  I want them to be great because they are great. There are many disabled writers, artists, athletes, business people that are worth being spotlighted, because of their accomplishments not because of their disability.

I read an article recently by a disabled young woman and she wrote that “The disabled are not here to inspire you.” I think when considering heroes and success this is important too. Someone with a mental illness isn’t inspirational just because they get out of bed and dress in the morning, or take a shower. The disabled aren’t inspirational just because they have a job.

Disabled people are as competent and talented as anyone else.

When we get to a point when kindness is described as an event between two human beings and not a healthy individual and a “special needs” man, and when we get to the point where the success of the disabled is the norm and not the exception, that is when we have reached a balance and one group isn’t seen by the other as less-than or inspirational just for being.

We have a long way to go.

A Surprise Over Lunch

12 Saturday Sep 2015

Posted by in heroes, hope, mental illness, schizophrenia

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My husband cooks for and serves the low income and homeless every Friday morning. The non-profit he volunteers for is currently looking to fill the Volunteer Coordinator position so my husband has helped out by doing a few more duties. One of the things he has been doing lately is leading the volunteers in a discussion (like a short meditation) during the time in between cooking and serving the food.

Yesterday the pastor was going to talk about heroes so he asked my husband to ask everyone who their hero was/is. Because my husband was the one directing the discussion, he was the first one to say who his hero is, and while we were sitting there having lunch, he told me that when he thought about his hero, he realized it is me.

In a restaurant crowed with people, an avocado, tomato, grilled cheese sandwich in front of me, tears streamed down my face as my husband told me why I am his hero. “Every day, every single day, you get up and you fight. You have to fight to overcome so much. You fight and you write, and you make a difference. I can’t imagine how hard it is. You are my hero, and I realized it for the first time today.”

I can’t tell you what it is like for the person you love most in the world to tell you that they think of you not only as a hero, but as their hero.

This girl from a town of five thousand people, this girl from a poor family, this woman with paranoid schizophrenia, yes her, her, her…she is someone’s hero.

I don’t think I am anyone special, and I don’t think I do anything special. I simply live, but now I know that someone who watches me closely, who knows most of my actions, who knows my character intimately, thinks I am a heroine.

If it is possible for me, then it is possible for you. You may be a hero to someone and not even know it yet. What do we need to do? We need to keep on keeping on – we need to push forward. We need to try our best. We need to get back up when we fall. We need to put our former episodes behind us. We need to hope for a brighter future. We need to see beauty in our lives and in our days. We need to meet the challenge of being mentally ill every day, and try to have a warrior’s spirit. We need to take the next step. We need to keep moving past our limitations. We need to smile and hold the thought in our heart that people are looking to us, learning from us, gaining courage from us, and we may be inspiring someone to do something great that changes the world, and we may be changing the world ourselves. Go heroes! Go!

Visitors

06 Sunday Sep 2015

Posted by in relationships, writing

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My oldest brother is visiting. He is seven years older than I am. I can remember when I was a little girl, and my parents were separated, my brother would pack me and my other brother up and take us out to a neighboring town where our mom was waitressing, so we could see her before bed.  While we were visiting my mom, we would fold napkins for the tables, and when we left she would give us After Eight Mints which I thought were the fanciest chocolate in the world. My oldest brother would take us home and help us get to bed.

Today we are all going to a baseball game. Baseball has been a big part of my brother’s life. I remember going to watch him play when he was in high school. In grade school, like most young children who are exposed to both fantasy and religion, I believed a combination of the two, and I used to try to use “magic” prayers when it was my brother’s turn to bat in order to help him do well. I would sit there and hum, or recite the same word over again and again, with the full belief that I was changing the course of the game.

I loved my oldest brother, and I thought almost everything he did was “right” and “cool.” I am sure he is the first person in this world that I looked up to. I can remember that he used to keep Reeses Peanut Butter Cups in the freezer and tell us not to touch them. Even though I would open that freezer drawer and stare at that candy longingly, I never took one from his stash. I also remember that he had a pet mouse that he took with him to a baseball game one day and someone accidently killed it. My brother came home in tears. It was one of those times when I wished I knew the right thing to say or do, but I was still pretty young without a lot of emotional resources or experience.

When I was still in grade school, my brother made me a concoction of mouth wash and I’m not sure what else, and told me it was “White Lightening” and that it would give me super powers. I took the potion to school, and would drink it on the playground and then run as fast as I could. The teachers questioned me about it, and took it away from me. They may have even called my parents, I’m not sure. All I knew was that my brother had given me a bottle of super powers, and I was going to use it.

Today as I watch the pitcher warm up his arm, and the first batter step onto home plate, I will be thinking about the young boy who was one of my first caregivers and heroes – a boy who had a lot of responsibility placed on him at a very young age, and never took out the pressure on his younger siblings. I’ll be thinking about him swinging a bat and I might say a few “magic” prayers that this time he wins at something bigger than baseball. I want him to win in love and in life.

To Caregivers Everywhere

05 Sunday Apr 2015

Posted by in caregivers, heroes, hope, mental illness, schizophrenia

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We could never walk this path alone.

This is to the caregivers, the mothers, the fathers, the sisters, the brothers, the wives, the husbands, the friends. To all of you who give of yourself to make the life of someone else easier, brighter, better, and more manageable.

There are times when we give you a hug, and say thank you. Hold on to those times, and know we mean it always. There will be dark days, and you will need these words as medicine to ease your pain.

There are times when we get angry or frustrated, and you are our target. Don’t let these words sink in. Call a friend, take a break, have some coffee or tea, take a bath, take a walk. Take care of yourself. Above all, know you don’t deserve it.

Hold on to the memories of our laughter and love.

There are times when the reality of our illness gets into your heart and colors your mood, dark. Go ahead and cry. It is sad. It is hard. There are days when it does seem unfair. Give space to your feelings. Find someone you can be honest with who doesn’t judge you for feeling like you just can’t do it another day.

There are times when you doubt yourself. Is this the best way?  Making choices out of love and concern is always the best way even if it makes us unhappy. We don’t always know the right way.

There are mornings, there are afternoons, and there are evenings…you get tired. If you need to go away for a few days, and you can arrange it, don’t feel guilty.  Go. We will both be better for it.

These are some of the things we can’t always express to you, but if we could, we would tell you, your care is as important as our care. We depend on you to be patient, to be firm, to be compassionate, to be helpful, to be kind, and to be there for us when no one else is. In order to be there for us, you need to be there for yourself.  Do the things you enjoy.

Somewhere in all of our hearts we wish we could give you a medal. We wish the president of the United States would recognize your effort. We wish we could buy you a trip to Paris or to a tropical beach. We wish you could have whatever your heart desires. Because more than anyone else, we know you deserve these things.

Know that even when we can’t say it, we love you. You are our chance, our hope, and our light.

We can’t walk this path alone, and it is your hand we reach for.