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A Journey With You

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Does it Scare You When I am Just Like You?

07 Saturday Apr 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized

≈ 19 Comments

Tags

brain health, courage, friends, hope, mental health, mental illness, mentally ill, schizophrenia], travel, wellness, women, writers, writing

Undeniably, there are times when I need special accommodations for my illness. There are times when I need people to be aware of the fact that I have schizophrenia and either help me out or give me the space to try and help myself. But there are those glorious times when I am not fragile, I am fierce and tough, and intelligent, and funny and I don’t need any special attention or care.

It is the space where I don’t need anything more than to be treated like any other human being that I live for and love. It is those people who treat me as if I belong, as if I’m not different, as if I won’t break or fall apart, or as if I am not fragile or needy or imperfect who makes me feel the healthiest, the happiest, the most energized, strong and capable. They help me in my healing and help me to become more and more of myself.

I have several people in my life who treat me this way both friends and family. I had an experience with a relatively new friend though, that was the epitome of empowering and normalizing and badassery.

I have a writing buddy who I have been talking to on Skype every Wednesday for months. We talk about our writing, share resources, occasionally read each other’s work, take classes together, and basically bolster each other up and along with our writing goals. She wanted to come out to California and see me. My husband was going to Miami to see his mother for a week, and he never leaves me alone.

My writing buddy, knowing about the fact that I have schizophrenia and that my husband doesn’t want to leave me alone for a week, offered to come and stay with me. She has never been to my house. We have never met in person. She planned on staying ten (which could have been long) days. And, the biggest part of this is my having schizophrenia didn’t scare her. Her coming across the country to stay with an almost stranger who she knows has schizophrenia is gutsy, brave, and speaks volumes about her as a person.

She obviously houses no stereotypes about my illness. She obviously expected things to go and be okay. She was not afraid; she was not reluctant. She just did it, and it was productive and fun. We were creative, talkative, ate good food, walked in the park, saw museums, and shared writing, writing, writing. We developed a morning routine together and worked well while we were both in the same room. We were two women together who love our art and are friends. We shared our passion, and we established our relationship.

I got to put my identities writer and friend before my identity as someone with schizophrenia. I got to be normal for ten days. I got to be a creative woman who loves words and can be a good friend.

I got to show someone my neighborhood, my home, myself and it went well, and I was well. And that is so much, so very much, it is a piece and a part of everything.

 

 

 

 

 

 

The Internet for the Mentally Ill

24 Thursday Sep 2015

Posted by A Journey With You in mental illness, relationships, schizophrenia

≈ 6 Comments

Tags

Art, benefits, bipolar, college, computers, creativity, current affairs, depression, friends, history, Internet, medications, mental health, mental illness, mentally ill, network, photography, psychiatrist, psychology, schizophrenia, school, social isolation, symptoms, therapist, triggers

I was talking to my psychiatrist about my how I socially isolate and he said that he knew people frequently disregarded social media as a place to build real relationships because there is the tendency for people to be inauthentic on social media – only presenting their good side. But he suggested that for people with a mental illness it could be the difference between interacting and not interacting with people. I know for me, the majority of the time, I am in a room by myself writing, reading, or participating on social media.

When I was first diagnosed with a mental illness back in the 90’s the Internet was just starting to be popular and it was very expensive (you paid by the hour for services like AOL), it was dial-up and very slow compared to today.  Businesses were just starting to build websites and people communicated in chat rooms.

I’ve lived with a severe mental illness for over two decades and in that time I have seen the opportunities for people with all kinds of mental health issues explode on the Internet.  Here are fourteen of the most obvious ways that the mental health community can benefit from the Internet.

  1. You can email your doctor
  2. You can keep a blog to document your history (to share with a therapist or psychiatrist)
  3. You can track your symptoms
  4. You may be able to discover what triggers your symptoms
  5. You can write down your daily thoughts in order to help you with your memory later
  6. You can make friends
  7. You can communicate with others
  8. You can join a support group
  9. You can use it to network
  10. You can help others
  11. You can develop your creativity (photography, art, writing)
  12. You may be able to find work
  13. You can take classes or earn a degree
  14. You can educate yourself about your illness, or current affairs, or almost anything

These are the most obvious benefits that wide use of the Internet has brought to people with mental illnesses who may be isolated socially. I have used the Internet in all of these ways, and I am comfortable saying that the Internet has improved the quality of my life tremendously and afforded me opportunities I wouldn’t be able to handle otherwise. I am currently working toward a certificate in creative nonfiction from a great school (UCLA), I am working at developing a career as a writer, I am networking with other writers, I communicate with people from all over the world, and I read stories and news daily.

Many people see the negative side of having computers be such a big part of our lives, but I would say for the mentally ill and the mental health community, it has opened so many doors that may have been impossible twenty years ago.

It may be true that many people are not authentic on social media and those relationships often lack depth, truth and meaning, but I think if you pan for the gold that is among the rocks and sand you are bound to find it. I’ve found it, chunks of it are everywhere.

In Case You Forgot, I Have Schizophrenia

20 Sunday Sep 2015

Posted by A Journey With You in mental illness, relationships, schizophrenia, writing

≈ 7 Comments

Tags

acitivist, advocacy, Advocate, bad days, friends, hope, mental health, mental illness, mentally ill, paranoia, paranoid schizophrenia, psychosis, relationships, schizophrenia, symptoms, writing

Yesterday, two of my best friends came over (they are both writers and one has a book coming out in a couple of weeks). We were definitely not short on things to talk about. But half way through lunch I said, “I’m surprised neither one of you wrote to me today after posting on my blog and then pulling the post down a few minutes later.” They both said that they thought about it, but knew they were going to see me later that morning.

There are times when paranoid schizophrenia is not at the forefront of my mind, not often, but there are times, and I think it is easy for some people to forget that I actually have a mental illness, because I don’t see people very often and when I do, I usually am not having symptoms or I wouldn’t be socializing, or the symptoms are minimal.

Yesterday morning I was sick. After posting that blog about a specific drug company, a wave of paranoia hit me, and I immediately started to take action to make the thoughts and feelings go away – I took down the post, I sent an apology. I was paranoid that people with schizophrenia would stop taking their medications because of my post. The thought of that was making me anxious and erratic. After I did everything I could do to try to erase the post I went and curled up with my husband who was watching the news.

He knew I was suffering. I couldn’t stay still very long. I am fortunate that the paranoia didn’t keep me from spending a wonderful morning with two women I love and who I don’t see nearly enough.

I wanted to let you know that there are times my illness takes me out of commission and makes me behave in ways that only make sense to me.

If you follow my blog, you will see it occasionally, because it can’t be hidden.

I try to write what it is really like to live with paranoid schizophrenia. I try to be truthful. That means I can’t leave out the bad days or the struggles or you wouldn’t get a clear picture, and for some people it is much harder than it is for me.

I think about those people daily.  I write to make my life better, but I write to make their lives better too. If I can use my words to help better the life of anyone with schizophrenia, I am going to do it. You can bet, I’ll take the time, form the sentences, type the words, and find somewhere, somehow to get them out there. When you know what I know about psychosis, (and that some people suffer from it daily) writing is the least I can do.

The Battle That is Mental Illness

11 Friday Sep 2015

Posted by A Journey With You in mental illness, relationships, schizophrenia

≈ 11 Comments

Tags

battle, bipolar, community, depression, essays, family, friends, mental health, mental illness, mentally ill, schizophrenia, symptoms, writing

Everything is going well. We are all laughing, joking, sharing appetizers, and telling stories. And then something turns and my mind leaps and twists, and I can no longer join in the celebration. Such is the reality of living with a severe mental illness. There is no clock telling you, “You will be fine for the hours between ten and two, you will become paranoid at three and you will have a panic attack at five.” It simply doesn’t work that way. Yes, at times there are clues and triggers, but not always. And even when there are triggers, like too much stress or over stimulation, you can’t always avoid it, unless you want to stop living all together, and just give up. For me, that is not an option.

Because some people have limited interactions with me (they only see me a few times a month, or even less, some people only see me a few times a year), but interact with me daily on social media, it can be easy to forget that I have a mental illness.

I am both thankful and frustrated that people forget that I have schizophrenia. I am thankful because I am treated like everyone else, but at the same time, I am frustrated because when symptoms do show up, people can have little tolerance for me, and my “special needs.”  People often expect more from me than I am capable of doing, handling, or giving. I can’t for instance, always meet someone for coffee even if I say I will. I may wake up that morning to intense anxiety or symptoms of paranoia making it impossible for me to even attempt a social engagement. Someone may buy me a meal, but because of paranoia, I can’t eat it. I may need to go somewhere and lie down for an hour unexpectedly.

So often when you are mentally ill you feel isolated and alone (because of thought disturbances) but the truth is mental illness isn’t a solo disease. It impacts friends, family and at times, the community.

There needs to be tolerance and acceptance that go both ways. The mentally ill person needs to accept that their illness has an impact on others, and friends and family need to accept that symptoms can’t be scheduled for the most convenient time.

It’s a battle this illness, but unlike cancer you know you’ll never hear, “You are schizophrenia free!” This is a battle that is waged over the course of a lifetime, and it is important to understand and support every member of your battalion so no one is left behind and there are no casualties.

To All The Kennys Everywhere

08 Tuesday Sep 2015

Posted by A Journey With You in mental illness, relationships, schizophrenia, writing

≈ 8 Comments

Tags

activist, advocacy, bullying, compassion, empathy, essays, friends, hope, hyperactivity, inspiration, love, mental health, mental illness, mentally ill, psychiatry, psychology, schizophrenia, social media, writing

Back in the nineteen-seventies when I was in grade school, kids with special needs usually went to a different school than children without special needs. When I was in fifth grade there was one boy, Kenny, in my class who was diagnosed as hyperactive. Kenny sat a seat or two behind me and would constantly kick the seat in front of him, drum on the desk, occasionally touch one of the other kids, and once in a while say something in the middle of class. All of the kids tried to avoid Kenny because we weren’t used to seeing kids with disabilities and Kenny was very disruptive.

One day the school psychologist called me out of my math class. “Do you know Kenny?” He asked.

“Yes.” I said.

“Kenny listens to you. I need you to help Kenny follow the rules and settle down in class.”

“Okay. I’ll try.” I said.

My heart sunk when I went back to class. If I befriended Kenny the other kids would make fun of me. I didn’t know what the adults expected me to do. I also wondered why Kenny picked me out of everyone in class to say he would listen to me.

After that day, when Kenny would kick the chair of the student in front of him, or start drumming loudly on his desk, I would say, “Stop it, Kenny.”

I tried to help without giving too much attention or kindness to Kenny. I didn’t want to be seen as someone who liked him, or wanted him as a friend.

Over forty years later, I am an adult woman with schizophrenia and every time someone posts about my diagnosis on one of my social media accounts many people unfriend me. I can only assume people don’t want to hang out or be seen with the woman with special needs.

If I could go back to fifth grade, I would pull up a chair beside Kenny and hold his hands to help him keep them still. I would talk to him, and eat lunch with him in the cafeteria. I would be a friend to him even if the other kids made fun of me (especially if the other kids made fun of me).

This schizophrenia has given me radical compassion and radical acceptance. I can’t be sorry for that. I just can’t. If there is someone uniquely-abled in your life, I encourage you to embrace them, because if you don’t, you may one day be filled with a sense of regret and a missed opportunity to love and that is always tragic and deeply painful.

Symptoms and Celebrations

15 Saturday Aug 2015

Posted by A Journey With You in mental illness, schizophrenia

≈ 9 Comments

Tags

anxiety, celebration, friends, mental health, mental illness, mentally ill, paranoid schizophrenia, psychiatry, psychology, schizophrenia, social anxiety, social isolation, symptoms, weekend, writing

There are things I do in order to adjust to my illness. My husband goes along with these adjustments to accommodate me and make me as comfortable as possible in every setting. I don’t know what other couples have to deal with but I imagine they make concessions for one another too. Schizophrenia is complicated and never far from our life, but most of the time we don’t notice it threatening or knocking at the door – we have grown so accustomed to trying to keep it silent by altering our lives.

Last night we met up with our regular group of friends (there are eight of us in the group). We met up at a bar in a part of the city that makes me uncomfortable. It is possible to find free parking around the bar if you are willing to circle a few blocks out. It is summer right now, so it stays light much longer, but when we meet at this bar in the winter time, it is always dark when we leave.

I don’t like walking through certain neighborhoods even during the day, but walking them at night terrifies me. My husband really loves these outings with our friends, and it is definitely good for me to socialize with people besides my husband. So, we make an effort to go, and the way we handle parking is something my husband and I agreed upon over three years ago when we first started meeting up there. We pay for parking in the lot right next to the bar.

My husband and I are usually very frugal and don’t spend extra money on anything, but in order for me not to be overcome by anxiety, we pay the eight dollars. Our friends always tease us about paying for parking but we know it is well worth it for me to enjoy our time with our friends and not spend the whole night focused on the fear of walking to the car when we leave.

Eight dollars is very little to pay for peace of mind.

We are meeting with the same group of friends for brunch tomorrow, and then one of our friends is performing in the park later in the day, and we plan to go and watch her play her guitar and sing.

I have spent the whole week in the house. I have barely stepped outside, and the only person I have talked to face to face is my husband. The strange thing is, I don’t mind this social isolation at all. Tonight before going to the bar, I wanted to back out of our plans, but my husband was insistent. It was one of our friend’s birthdays last week, and another one of our friends just completed graduate school.

I have such a good time when we all get together, but getting me there is the hard part.

With the happy hour last night, and the brunch today, I consider the weekend to be fully packed. I may go into shock from laughing and talking so much (I tend to talk a lot when we all get together, or at least I think I do. I definitely laugh a lot).

Sunday, my husband and I plan to have cream cheese, smoked salmon, capers, red onions and slices of tomatoes on toasted bagels for breakfast. We will also buy cream for our coffee as a special treat (we normally use milk).  This is the breakfast we always have when we are celebrating something special with my husband’s family. We have been doing it for seventeen years. It is the first time my husband and I will prepare this meal for just the two of us without having relatives over or being at a relative’s house.

For someone who has social anxiety and who socially isolates seeing friends three times in one weekend is reason to celebrate.

Heck, being alive is worth celebrating, and so is having a spare eight bucks to pay for parking.

We don’t need to wait for the relatives, we can have our own party for any reason we want to.

Here’s to you celebrating this weekend – have a great time!

Social Isolation as a Symptom

09 Tuesday Jun 2015

Posted by A Journey With You in mental illness, schizophrenia, writing

≈ 6 Comments

Tags

airplanes, creative nonfiction, friends, isolation, mental health, mental illness, psychiatry, psychology, schizophrenia, social, symptoms, writing

I live a ten minute drive from the airport. My house is just to the right of the flight path. People from all over the country fly by my window every day. If they are seated on the right side of the plane, and looking out the window, they can see a white boxed shaped building with arches above the windows.

Two international flights come in every day, one from London and one from Japan.

All those people passing by my window as I sit at my computer, pour a glass of water in the kitchen, or lounge on the couch reading a book. People moving. People traveling. People living their lives.

I walk to the largest urban park in the country. Visitors from all over the world pass by me. I hear languages I can’t identify. I see tour groups where the leader holds up a flag so no one gets separated from the group. I pass by museums, a koi pond, and a plaza. People are so close I could reach out and touch them, but I don’t.

Last week I read an article by a woman with schizophrenia. She wrote about being in love with her loneliness. I read the words again and again in understanding and recognition.

Some symptoms get worse with age.

Today, I am off to a celebration. My computer will be waiting for me. Books will be stacked, bookmarked, or spread open. The room will be the same as when I left it.

When I return I won’t speak to anyone for ten hour stretches. The sound of planes will keep me company. I will see tourists exploring the park. I will read, and I will write.

I will live in the world of my mind, and yes, I will experience the love of loneliness.

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