Tag Archives: education

Finding Comfort: People Sharing

29 Friday Sep 2017

Posted by in mental illness, schizophrenia, Uncategorized

≈ Leave a comment

Tags

, , , , , , , , ,

In the blog I wrote yesterday, I mentioned my breast cancer scare. One thing that has helped me so much since the discovery of the lump in my left breast and all the ensuing appointments, procedures, and tests along with the painful wait to hear results, is reading about other women’s journey with cancer on social media.

For well over six months I have followed one woman while she had a mastectomy, went through radiation and chemotherapy, and recently went through reconstructive surgery. She is currently looking into places to get a tattoo placed over her scars. Every day during her ordeal she has posted about the details of what she is going through (“chemo brain” and other things). She also posts a daily gratitude list. Her list had included things as simple as soft t-shirts and foods that she could taste even when the chemotherapy was destroying her ability to enjoy eating most everything.

I follow another woman named, Kathy, and she started her ordeal with an abnormal mammogram back in June. I followed her through ultrasounds, a biopsy, positive test results (positive for cancer, not positive in a good way), a lumpectomy, and radiation treatments. She writes an essay every day that she titles, “The Moment of Goodness Despite the News,” or something very close to that. She is currently struggling with the whirlwind of appointments, treatments, procedures, etc. she just finished. She thought when she had finished the radiation treatments her life would go back to exactly how it was before, but that isn’t how it is going for her.

I can’t tell you how much these two women have, and are continuing to, help me. By sharing their experiences on social media, I discovered what most of the treatment options would be for me if any of my tests came back positive for cancer. I found out that if the cancer was detected early enough, a lumpectomy was an option instead of a mastectomy. I learned that some women took a pill for ten years instead of radiation or chemotherapy. I discovered that some women had radiation while others, had both radiation and chemotherapy.  And all of this knowledge, all of this sharing of life experience comforted and educated me. It took some of the fear away. One of the reasons so much of the fear left me was because I felt I grew to know these women and if they could get through the trauma, stress, and difficulty of breast cancer, it was possible for me to get through it as well.

There are so many negative things we can say about social media. There is so much to dislike about our technology-filled lives. But there are incredible benefits and comforts to be found there as well. What I am hoping for with all the time I have spent and will spend on this blog, is that it comforts at least a few people about mental illness in some way.

If I can say that I have made even one person’s life a little easier, it has all been worthwhile. Consider it my thank you to God and the Universe for giving me this one glorious, painful, beautiful, difficult, astonishing, life.

My best to each and every one of you.

 

 

How to See and Not See a Disability

30 Sunday Aug 2015

Posted by in hope, mental illness, schizophrenia

≈ 16 Comments

Tags

, , , , , , , , , , , , , , , ,

I talk to my mom on the phone most days of the week. Often, we don’t have much to say to each other, because neither one of us get out much. Occasionally, my mom will read something in the newspaper and share it with me. Then she says, “I had some chat today.”

Last week, she said she had some “chat” for me. She read part of an article out of the newspaper about a man who had recently finished his master’s degree and was out celebrating.

He went with some other people to enjoy his accomplishments, and when the music started he began to move his wheelchair around to the beat. A woman, seeing him dance in his chair, left her partner and came over and danced in front of him.

In the article, the man said that the woman’s gesture ruined his evening. He was out having fun. He was enjoying the evening and the woman saw his chair and singled him out. She didn’t see him as a man enjoying himself. She saw his chair and took pity on him (at least that is how he interpreted the events and ended up feeling).

As someone with a disability, and as someone who doesn’t always know how to respond to disabilities beyond my own, I feel for both the man and the woman in the story.

When someone has a mental illness, I think it is best to treat them how you would treat anyone else, and leave it is up to them to tell you where their limits are. This probably works with all people with disabilities.

It is hard to be disabled and admit to yourself that you can’t do all the things you once did, or all the things that others can easily do.

It is important to see the person first and not the disability. It is important to allow people to be as independent as they possibly can be, because it is tough to ask people to do things for you, or make accommodations for you. Asking strangers for help can be particularly difficult.

I’m sure the woman who left her partner to dance with the man in a wheelchair intentions were good, but we need to listen and learn from people who are different from us about the most respectful way to handle their differences.

I know it is uncomfortable to be presented with a situation where you want to do the right thing, but you don’t know what the right thing is.

The last time I was away from home, and was overcome by anxiety, my friend said, “Do you want to walk?” On that walk, I was able to tell my friend about my anxiety which I was unable to overcome and I asked her to take me home. My friend didn’t make any assumptions about my symptoms. She didn’t try to talk me out of them, change my mind, or tell me to get over it in the many ways that people “kindly” do to people who are mentally ill. She was simply present for me, listened to me, and then when I asked, she acted by taking me home.

I can’t think of a better way to support someone with a disability – listen, support, act if asked.

Most of us want to do the “right” thing for someone with a disability. The right thing can be allowing them to lead you in the direction they want or need to go.

It’s tough to realize our best intentions are sometimes insulting, or rude, or hurtful, but if we can put ego aside and allow people to teach us, we will be far more compassionate, educated, and sensitive.

That can only be good.

Mental Illness and Self-Esteem

15 Monday Jun 2015

Posted by in bipolar, mental illness, schizophrenia, stigma

≈ 32 Comments

Tags

, , , , , , , , , , , , , ,

Having an episode of psychosis or mania is hard, and trying to put the pieces of my life back together afterward is brutal, but the things society says to me every day cause me to lose a piece of myself even when I should be repairing the damage.

The things that I do while psychotic and the things that I say to people cause me great shame once the episode is over and I can think rationally. Not only do I have to live with things like telling people I was Jesus, or telling people how the government was out to get me, or that I was being filmed or recorded, or any number of other delusions I may have had during an episode, I also have to live with the day to day barrage of messages that tell me that I am dangerous, that my illness is something to make light of, or even make fun of.  I have to live with the stigma, and if you don’t believe there is a stigma associated with mental illness, spend an hour on social media and you will see it.

I am not going to go into all of the jokes and memes and things people say on social media every day that chip away at my self-esteem, because I have written about them before. But I will say that even people who like to call themselves progressive, and think they are so loving and accepting join in the “fun.” People who would like to think they are sensitive to social situations, and the people who are marginalized, toss out words like insane, nut-job, lunatic, and pass around cartoons depicting a “crazy” lady with PMS.

When I see those words written from people who claim to like or love me, all I feel from them is a lack of understanding and hate. Yes, I literally feel as if they are sending hate at the mentally ill, and at me. Everyone in my life knows that I have schizophrenia. Anyone that cares what having schizophrenia is like can read my book, Pills, Poetry & Prose: Life with Schizophrenia, they can read my blog, or even more amazing, they can ask me.

If someone were to ask me what having schizophrenia is like, I would tell them it can be like going to a place that has your worst fears, and having to live those fears out for days, weeks, and possibly months. Are you afraid of being tortured? You will believe you are about to be tortured. Are you afraid of going to jail? You will believe you are going to jail. Of course, during psychosis you will even be afraid of things you didn’t know you were afraid of. I can think of nothing more appropriate to call it, than hell on earth. It really is like the popular images and thoughts on hell. In the beginning psychosis is usually pleasant for me, but it always turns to terror over time, and that terror is total and complete.

So, if you ever wonder what you can do for someone with a severe mental illness, I have a suggestion; you can help build them up. The world is constantly tossing self-esteem battering information their way. You can be the change in their lives. You can help them see their talents. You can help them see their strengths. You can point out their positives. You can be kind to them, because it is tough. It is so damn tough, and we all get tired. It’s exhausting to constantly try to tell yourself you are okay when the world has another message for you.  It’s almost impossible to fight the world on your own. Be an ally. Spread the love.

A New Superhero

27 Monday Apr 2015

Posted by in bipolar, mental illness, schizophrenia, stigma

≈ 9 Comments

Tags

, , , , , , ,

I’m going to the thrift store to buy a cape.

I want my cape to be long, calf length, with a little tie around the neck and a collar that stands up.  If I could find something made out of grey wool, it would be perfect.  Grey would match most of the things I wear.  I want the cape to remind me that today, I am becoming a superhero.

I think my superhero name will be Stigma Buster.

My superhero powers will be words both spoken and written.  My superhero equipment will be a tablet,  a laptop, desktop computer, and a pen and notebook.

I will take this oath in front of you, and that will be my final step to accepting this superhuman role that I have been avoiding for the past twenty years.  I know you didn’t bestow this great privilege upon me, I was born into it.  My only hope is that I can do this job well, and not let down the millions of people who are counting on me.  I know the full consequences of the position, and I am ready for my oath now.  Go ahead, swear me in.

I, Rebecca, do here by commit to take on the superhero role of Stigma Buster.  I promise to use all the equipment in my possession along with my superhero powers, words, to overcome stereotypes and jokes about schizophrenia where ever and whenever I encounter them.  I also commit to take my medication and guard my health so I can be a successful example of someone living a “normal” life with the diagnosis of schizophrenia.  I will work hard to become a writer and speaker, so other people living with the disease can look up to me as an example.

People may call me “crazy” behind my back, or even to my face.  I may lose some friends and gain some enemies (even Batman had the Joker).  After over two decades of hiding my diagnosis and fearing what others will think, I will take my chances.

I choose to believe people will take the side of the underdog.  I choose to believe that people, when they see me, a superhero, swooping in to take a stand against stereotypes and hurtful jokes, they will join me, and thus gain some of my superhuman pixie dust that will bring joy and good will into their lives.

While I am at the thrift store, I will look for other capes, because I am hopeful that there will be an onslaught of applications for the role of Stigma Buster Sidekick.  Get your pens ready, I’m taking applications now.

Success!

13 Monday Apr 2015

Posted by in mental illness, schizophrenia, travel, writing

≈ 6 Comments

Tags

, , , , , , , , , , , ,

I made it! I accomplished something big. I went to a writer’s conference in Minneapolis (AWP15) for six days.

I only ran into problems once. I had an anxiety attack on the plane on the way there. The attack lasted about seventy-five minutes and was difficult to handle at thirty thousand feet in the air, but I survived.

As always, my husband was a trooper. He tried to calm me down the last half of the flight, but none of his usual tactics worked.  I just had to live through sweaty palms, a racing heart, a nervous leg, and the feeling that I wanted out of my skin.

My husband was worried about how I would handle the actual writer’s conference, because there were thousands of people there, and so many panels, talks, readings, and of course a book fair with hundreds and hundreds of booths.  My husband thought I would get overwhelmed, over stimulated, and have a minor breakdown.

I didn’t. I fell in love.  I was so happy. I felt like I was at my very best.

I only went to two of the talks and panels. I found what interested me was the book fair with all the journals, presses, MFA programs, book signings, etc. I spent three whole days going from booth to booth to booth.  Many of the booths I went to twice.

Although when I am at home, I spend the majority of my time alone without talking to any people, I was so talkative.

I told stories and jokes like how I accidently walked into the men’s bathroom, saw a man, screamed, and ran out.  As they laughed, people assured me that would be the low point of my day.

I told people that I write poetry and creative nonfiction, but that I can’t write fiction, because my brain doesn’t work that way.

I told two editors that I mostly write about schizophrenia, because I suffer from it, and they were both interested in my work.  One gave me his card, and told me to e-mail him some story ideas.

We saw snow for the first time in ten years.

We ate in some cool restaurants.  One was called, Hell’s Kitchen.  We tried to taste the local food.  My husband had walleye fish prepared three different ways.  We tried cheese curds, artichoke bruschetta, munched on tater tots, and had one of the best flat breads I have ever tasted.  We tried local beers (well, my husband did, I don’t drink).

To let you know where my priorities are, I ended up bringing home over sixty pounds of journals, and books, and had to leave half of my clothes in Minnesota to do it.

I’m back now, and ready to write!

The Brain Game: Capturing a Slice of My Old Self

07 Tuesday Apr 2015

Posted by in hope, mental illness, schizophrenia, travel

≈ 5 Comments

Tags

, , , , , , , ,

Before I was diagnosed with paranoid schizophrenia, I was a very trusting woman. I welcomed the world, and all the people I met, and they welcomed me. It was exciting to be so trusting, so open, and so free.

It has been years since I felt really safe and comfortable in the world. I feel safe with certain people and comfortable in certain places, but those people and those places are very few.

Because I miss the way I used to be, I am wondering if I can capture a bit of me, as a young woman, and my spirit, and train my brain to trust a little more.

I am taking two trips soon and I am very worried about the details. Normally, I think about a trip in steps; getting to the airport, getting on the plane, getting to the hotel, finding a place to get food  so I can take my medications, looking around the neighborhood that we are staying in to see if it is safe. There are more steps than that, because each little piece of the trip becomes a step, and I mark them off in my head as each step or piece is accomplished.

In other words, there is no joy in traveling. I worry about each step, checking off each step, and as each step is checked off, I immediately start thinking about the next one. This is no way to enjoy a vacation. It is rather obsessive, and it strips traveling of all its adventure and fun.

On these two trips I am taking in the near future, I am going to try to relax. I am going to practice telling myself that as long as I have money, and my medication, that all will be well. Even if I don’t have money, I can get some wired to me, so again, all will be well. If the worst happens and my medication is lost or stolen, I can go to an emergency room, and tell them my diagnosis and a list of my prescriptions.  Someone will help me. I am certain of it.

I will tell myself these things, and then I will try to enjoy. I will try to enjoy reading on the airplane. I will not worry about my arrival. I will try to enjoy the adventure of finding public transportation to my hotel. I will try to enjoy the days spent away from home and not think about every little step in the process of returning home.

I hope that if practiced enough, this act of telling myself that all will be well, can change my brain. The brain is an amazing piece of who we are, and who I am is not trusting. I want to be trusting, and enjoy the opportunities and adventures life brings to me.

These upcoming trips are going to be fantastic. I am going to have an adventure that changes my life (in a good way). I am going to try new food, and talk to new people. I am going to see art and architecture.

I have started the process of telling myself that all will be well. As I smile, laugh, and truly enjoy myself, the world will mirror my reactions. I can expect to trust and be trusted. I can expect to live my experiences to the fullest. I can hope to regain some of the self who was lost all those years ago.

Standing in the Light of the Sun

04 Saturday Apr 2015

Posted by in mental illness, schizophrenia, stigma

≈ 4 Comments

Tags

, , , , , , , , , , ,

Yesterday, while I was grieving the loss of my poetry mentor, and a great man, and friend, I wrote an essay about my recent experience with coming out of the closet.

I remembered that my friend and mentor cautioned all of us to be kind, be compassionate, because you never know when your final day will arrive.

Well, I have written many articles about the stigma associated with schizophrenia and the misunderstandings I have encountered, but I haven’t written about the acceptance or the love.

As I walked out of a poetry reading last night, I saw a poet I know on the street. She had read some of my articles. She told me I was courageous and brave.

That isn’t the half of it though. People have written to me telling me thank you, because they have experienced depression and anxiety for years and have been unable to talk about it. My opening up has allowed others to open up.

People have told me that my illness doesn’t matter, that is doesn’t change anything, that they still see me the same way. Nothing has changed.

People have told me that they love me more now that they know more about the daily battles I have to go through.

People have continued to open their hearts and homes to me.

I haven’t said it yet, but I want to say it now, people have been great.

I am lucky. I am blessed. I am welcomed. I am loved. I am thankful. I am grateful. I am a whole person walking along with others.

I have come out of the shadows, and I have found this space to be warm and comforting.

There is light, so much light.

It will take time to soak it all in.

Magic Ink

29 Sunday Mar 2015

Posted by in mental illness, schizophrenia

≈ 3 Comments

Tags

, , , , , , ,

Last night was Earth Hour.  We turned our lights off for one hour and I wrote with a flashlight propped up on the headboard above my head.

I started to write about my cousin, who also has a mental illness, and has been in the hospital since September.  I want her to feel the comfort of her own bed, and be able to snuggle up with her favorite blanket like I am now.  I want her to have the freedom of a stable mind, one that doesn’t betray her at every turn.  I don’t know what she likes to do, but if it is to eat ice cream, go to the park and pet dogs, or go shopping for shoes, I want her to be able to do those things and smile.  I want her to smile, and laugh, and get well.  I want her to be free from hallucinations, free from invasive thoughts, free from whatever her symptoms are that keep her from enjoying life in the community.

Then I realized my words were such a small thing to give to such a big situation.  I stopped writing about my cousin.

I started to write about the people with schizophrenia that live on the streets and that my husband volunteers to feed.  I want those people to have a warm shower, a clean bed, clean clothes, and someone to care for the wounds they have developed from years of neglect.  They have everything from sores on their feet, to untreated diabetes.  I want them to be treated with concern and respect, and have their needs met, and more.  I want them to thrive.  Again, I want them to smile, and have the joy of lounging on a soft bed, or on a couch, writing down their thoughts or memories.

Again, I realized my words were too small.  The page was big and white, and I couldn’t find the vocabulary for the concern I have for the needs of all the mentally ill and homeless people in my city.  I stopped writing about schizophrenia on the streets.

I turned the page in my notebook and started to write about my husband, who was curled up beside me.  I threw the pen and paper on the floor and curled up in his arms.  I couldn’t write about how fortunate I am.  I could easily have these other people’s experiences.  I could be in an institution battling my symptoms, and I could be on the street struggling not only with symptoms but with survival.  I could be them, and they could be me.

It’s all too big for me to try and write right now.  They are all in my heart, they are all in my mind, and they are all in my pen.  I hope that my pen will someday be powerful enough to make their lives better.  I want magic ink; ink and words that have the capacity to go viral, to get attention, to make people act.  I have pen, paper, and hope, let’s pray that is enough.

Mourn the Innocent, but Educate the Public

28 Saturday Mar 2015

Posted by in mental illness, schizophrenia

≈ 7 Comments

Tags

, , , , , , , , ,

I know that mental health advocates, and some bloggers have been writing about this, and I wouldn’t be adding to that, but this is so important.  This has to do with every one of us that has a mental illness.  This has to do with how we are treated, and perceived.

The media is saying that Andreas Lubitz, the man who locked the pilot out of the cockpit and purposefully crashed a plane with innocent people on board, had an “illness” that he was hiding, and in the same sentence they are reporting that he was depressed.

At the time I am writing this they haven’t said that depression was the illness he was hiding.  Of course, the way it is presented, I would imagine, everyone in the world that watches international news, probably believes that depression is in fact the cause.  Even though the illness hasn’t been named yet, the constant reference to his depression makes it sound as if he was both suicidal, and in this case, homicidal due to mental illness.

I am very discouraged.  I feel like we have made great strides in terms of accepting depression and bipolar disorder over the last few years, because some very high profile people have come out and talked about it, or have died from it (terrible).   I was hoping that the stigma and stereotypes surrounding schizophrenia would eventually lessen due to more understanding about depression and bipolar disorder.  I was hoping.  I was hopeful.  Now, this.

The media in this case has done to the illness of depression what they always do in the case of someone who commits a crime that has schizophrenia.  They don’t take the time to explain that millions and millions of people suffer from depression every year, and rarely do they harm anyone (except possibly, and tragically, themselves).

Whenever there is a mass shooting in this country, I count the minutes until the reporter covering the story begins to speculate on the possibility that the shooter has schizophrenia.  At the same time that I am counting, I am also praying they will find the person doesn’t have a history of mental illness.  I know this sounds awful, but it is true.  Of course, I also weep for all victims of crime everywhere, because a violent act is always tragic.

Sadly, our country’s short attention span usually kicks in before they have cleared up the psychological state of the perpetrator in a wildly publicized case.  In two of the most high profile cases, the Aurora shooting, and the shooting of Congresswoman Giffords in Arizona, the perpetrators were in fact suffering from schizophrenia.  It does happen, but it is so rare.

Murders happen across this country every single day where there is no known history of mental illness in the criminal.  This scenario is by far the norm.  The fact that this is common doesn’t catch our attention though.  Having a mentally ill criminal is far more sensational, and captures way more viewers.

I fear this latest tragedy not only took over one hundred innocent lives, it sent the ground we have gained in fighting and overcoming stigma back a decade.  I know it is tiring, but as we mourn the loss of the innocent, we must also put on our hats as educators and begin discussing the reality of mental illness.  By far the majority of us (millions) wouldn’t commit a crime.  I imagine the numbers would go down even further if we had an adequate system in place to get people the help they need.