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A Journey With You

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Who has the Authority to Write About Mental Illness?

29 Monday Oct 2018

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

≈ 3 Comments

Tags

bipolar, brain disease, mental health, mental illness, mentally ill, psychiatry, psychology, schizoaffective disorder, schizophrenia], Voice, writing

I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.

I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine.  Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.

It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.

There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.

All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).

I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.

The Art of Tricking My Brain

27 Wednesday Jun 2018

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

≈ 9 Comments

Tags

brain disease, brain health, hope, inspiration, mental health, mental illness, mentally ill, motivation, pop psychology, psychology, schizophrenia], wellness

I have schizophrenia, but it doesn’t mean I don’t want to be successful at climbing the mountains that are there before me. I currently have myself in training for a steep climb, and chances are I will make it, but even if I don’t, I’ll be in better shape in every way than I was before I set out on this path.

 

Last night, my husband texted me that he was leaving work at 5:30 and that he would be riding his bike home. When I received the text, I pulled out our backpack cooler and started preparing a picnic. I washed some grapes, made a container full of cut cantaloupe, cut up three different kinds of cheese, packed a sleeve of crackers, and put some of the hummus my husband made in a Tupperware and added two bottles of water. When my husband walked in the door, I was ready to go. He changed his clothes, and we walked the mile to the organ pavilion in the park near our house. We sat on the steps and enjoyed the music of a funk band that was playing.
All summer long, the park near our house has free summer concerts three days a week. As we sat there, tears rolled down my face, and I said to my husband, “I finally feel like I am living my best life.”
In the last year, I have committed myself to make my life better in every way possible. I don’t sit by when things are difficult or not going well and take it. Not taking it, includes the symptoms I have from schizophrenia as well as other things that come up in life, marriage, family, etc.
My psychiatrist has told me that he can change my medications, or add additional medicine to try and clear up the remaining symptoms of schizophrenia but in every case like that, a person has to weigh the pros and the cons. One of the hardest things to deal with more medication is, of course, side effects. I feel like managing my side effects from the drugs I am currently on is a full-time job, and I don’t want to add any more requirements, suggestions, restrictions to that. It is hard enough as it is.
So, I do the best I can to overcome symptoms when they arise or to avoid any triggers that will cause them. The symptoms that cause me the most problems are anxiety, lack of motivation, and a need for increased sleep. Most days the need for increased rest doesn’t create too much of a problem because I don’t have a job I need to be at or any place I am expected to be (if I do have an appointment then it can interfere, but that doesn’t happen too frequently).
The anxiety and lack of motivation can disrupt my life though, and I am finding ways to handle those symptoms that are lessening their occurrence and hopefully getting me strong enough to work. (My dream is to make a living freelance writing, but I haven’t been able to overcome my symptoms sufficient to put in the time and effort and hustle that writing full time (or even part-time) takes).
How am I managing my symptoms better than ever? I am practicing all kinds of psychological tips and tricks to help fool my brain. I keep a gratitude list (which helps with overall perspective -things could be far worse), helps lessen anxiety and helps me focus my mind on what is going right instead of what is going wrong. I read a passage or two from the Bible every day, and I write my response to it. Many of the passages I read are hopeful and give me a sense that I am not alone, and that something more significant than me is in control (this is very comforting and helps with anxiety as well).
To trick my brain into overcoming my severe lack of motivation, I write down tasks every day that I want to complete. I rarely have in the three months I have been doing this completed all the tasks on my list, but on average I am finishing two to four of the tasks I want, and that is way better than I used to do.
Before I started trying to improve my life and lessen my symptoms, I had many days where the only thing I did was watch television and scroll through social media. In the past, I went weeks without getting out of the house. Now, I put on my task list every day, take a twenty-five-minute walk, and for the most part, I do it! Of course, the walking helps with the side effects of the medication (high sugar levels, high cholesterol, weight gain, high blood pressure, etc.) as well as elevates mood and makes panic attacks (I think) less likely.
What do I think helped push me to try so hard to create a system that helps me overcome symptoms? Like most people, I didn’t want to throw my life away, and I want to contribute to society in a meaningful way. Watching television and reading social media post left me feeling frightened, anxious, depressed, and many other negative feelings. In other words, the news and social media were hurting my chances of living my best life.

Setting Intentions for the New Year

01 Monday Jan 2018

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

≈ 2 Comments

Tags

2018, compassion, gratitude, healing, health, intentions, mental health, mental illness, mentally ill, new year, new year's resolutions, New York Times, pride, psychology, resolutions, schizophrenia]

Yesterday, I read this article in the New York Times . I thought the article was excellent. The title makes it seem as if it is only about New Year’s resolutions, but that isn’t the case. The article is about how willpower can cause damage to our health and compassion, pride and gratitude can create healing.

According to the article, research shows that we are willing to do many more tasks and accomplish much more if we feel proud, compassionate or grateful. I’m not going to explain the whole article here, but it is worth the read (I promise). It is one of the most interesting and possibly helpful, articles I have read on psychology in a long time.

So, as I look over the intentions I have written for 2018 and continue to add new ones over the next couple of days, I want to find far more ways to add pride, compassion, and gratefulness into my daily life. I can use all the healing and positive mental health benefits I can get, so this exercise seems like a worthy goal and a great way to start out 2018.

My husband and I sit down (without cell phones and television) to have dinner together most nights of the week. It isn’t that we have a fancy dinner, it is usually something easily prepared, leftovers, veggie burgers, fried egg sandwiches, or if we have been to Costco, we will have salmon filets. But it isn’t the food that we find important, it is the act of looking at each other and talking to one another. During dinner, we always ask the same question of each other, “What were the two best things that happened to you today?” There are times when we struggle to come up with two things, and other times when we list five or six. It is an exercise in gratitude that we have been practicing for a couple of years.

This year, I would like to add more rituals and exercises into our lives. I read on Facebook that a writer who I know keeps a jar and each week she writes down one good thing that happened and puts it into the jar. On New Year’s Day, she reads all 52 good things that happened in the last year. My husband and I are going to create such a jar, and make it our tradition to read all the highlights of the year the following New Year’s Eve or Day.  Keeping and adding to the jar should help with feeling more grateful all year long as my husband and I reflect on the best thing that happened to us each week.

Adding more compassion to our lives is fairly easy. I follow some blogs where people are going through some pretty tough health journeys (like cancer), and their words can often bring me to tears. I can make sure that I keep reading heartfelt stories and the experiences of others because it keeps my empathy and compassion muscles working. Also, I will continue to help raise money for the low income and homeless in our city. In fact, my husband and I are going to volunteer for one of our favorite non-profit’s events today. There is a concert in the park, and all of the donations received go to feeding, clothing, medical treatment, etc. for the poor. We are going to stand in a booth and collect donations, talk to people, and give out flyers.

I will continue to buy coffee, or lunch for homeless people who tell me they are hungry and ask me to buy them a meal. There are endless ways to show compassion. For example, I can have compassion on a barista at a coffee shop who is swamped with demanding customers – I can be patient and let her know that she is doing a good job and that I am not in a hurry. Ways to be compassionate will present themselves to me continuously, and I just need to be aware of being kind, and considerate of those around me.

The last of the three healing ways to make us more productive is pride. The article wasn’t suggesting we feel the kind of pride that makes us seem obnoxious to others. It was referring to a sense of pride, of being proud of a job well done.

I am proud when I finish a blog post. It doesn’t have to be a perfect blog post, and it doesn’t have to get dozens of likes. I am proud of having completed something that I think of as valuable. In the New Year, I plan to do much more writing (my mentor expects five to ten pages on my memoir every week), so I will have many opportunities to feel a sense of pride. My husband and I also want to cook a recipe that is new to us at least once a week in the New Year, so this is something I can do with my husband that would bring me a sense of pride.

If the researchers are right that compassion, gratitude, and pride are healing, then 2018 should be one of my healthiest years yet. If not, at least I will have made some great choices, and I can add that to my something to be proud of column which I hope is full

Being A Rock and Needing A Rock: The Two Sides to my Mental Illness

28 Sunday Aug 2016

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

≈ 11 Comments

Tags

anxiety, mental health, mental illness, mentally ill, psychiatry, psychology, relationships, schizophrenia]

(If you have been reading my blog for a while, you know that I don’t feel sorry for myself. I frequently write about the beauty I find and see in life even though I battle with a severe mental illness. I don’t want people to think that my illness does not impact my life, though. It would not be accurate or truthful to say that living with schizophrenia is easy. For me, and many others, it is not. Yesterday I posted something that was 100% positive so I thought I would give a little glimpse into the struggles that some of us with schizophrenia go through as well. I am not complaining. This essay reveals another side to living with mental illness).

I’m not always sick or experiencing symptoms of my illness. There are hours, and when I am lucky, whole days, where my symptoms are not present and I am just an average woman going about my life. During these asymptomatic times, I simply don’t stand out.

Forty-one days ago my husband’s aunt was moved into hospice. We immediately drove to Los Angeles hoping to beat the march of death and tell her good-bye. We were able to be with her, and her immediate family for eleven hours in the hospital. I was able to share memories, comfort her daughters and enjoy the company of extended family during a difficult, sad, stressful and solemn time. I managed the whole day with calm, serenity, strength and grace. I was able to say good-bye to someone I cared about without worrying at all about schizophrenia.

A few days later, we went back to Los Angeles for my husband’s aunt’s funeral. When we walked into the chapel, anxiety overwhelmed me. I couldn’t sit still. I went downstairs to the bathroom. I walked back up and sat in a pew. I walked outside. I could not get comfortable. I told my husband I was struggling. After a half hour of him trying to help me overcome my symptoms, my husband said, “You need to take some more medication today.” I did so willingly because I knew that he was right.

My husband and I spent the ceremony in the car trying to relieve my symptoms. When it came time to move to the graveside for the burial, I tried to join the other people mourning. I walked downhill and stood near the casket. I couldn’t stay, though. After a few minutes, I made my way back to the car. I climbed into the back seat and tried to nap (usually a higher dose of my medication will put me to sleep for a while). Before I knew it, my husband was in the car, and we were on our way to having dinner with a large group of family and friends.

I thought sleeping would help and that my symptoms would be gone but they weren’t. I was hoping that some food would calm me down. At the restaurant, I ate as much as I could. I still felt shaky and anxious. My niece asked me to go shopping with her. We went shopping and stopped by Starbucks. By the time we returned, most people were saying their good-byes.

It wasn’t until we got in the car and started to drive home that my symptoms finally subsided. I said to my husband, who had been so helpful to me all day, “I am fine now.”

There are times when I can be the support that my loved ones need and there are times when I need their support to enable me to get through a day with schizophrenia. For me, the illness is unpredictable, and that means I have to accept my weaknesses when they are present and stand firm in my strength when I have a full supply.

Learning Not to Make Assumptions Especially Regarding Dis/ability

23 Tuesday Aug 2016

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

≈ 4 Comments

Tags

assumptions, disability, disabled, helping, hope, inspiration, mental health, mental illness, mentally ill, psychiatry, psychology, relationships, schizophrenia], understanding

When I had my job downtown, and I used to take the bus or walk to work, I regularly encountered my city’s growing population of homeless people. Many of the people I walked past asked me for money. I occasionally give money to homeless people, but I prefer to buy them a meal. With this preference in mind, I went grocery shopping and bought bread, peanut butter, and grape jelly. That night before going to bed, I made eight to ten peanut butter and jelly sandwiches. I carefully packed them all back into the bread sack and took the sack with me on my way to work the next day.

I offered a sandwich to every person I saw asking for money on the street. Not one person took the sandwich. (I ended up giving them away to my coworkers). I learned a few lessons that day that extends to other areas of life and people. The most import lesson was, don’t assume you know what other people want or need.

It is possible that every person I encountered that day had already had breakfast at one of the local shelters, or even at Starbucks or a convenience store. It is also possible that some of the people I offered sandwiches to had schizophrenia and like me don’t trust taking food from other people. It is possible that living on the streets as a vulnerable person, they have learned that not all people wish them well (we have had many beatings and even murders of homeless people in the last year). There are many reasons for not taking a sandwich from a stranger. I can’t possibly think of all of them, and it is possible that each person had a different reason.

Not assuming what other people want or need extends to all the people and relationships in our lives, but especially to those living with a dis/ability. People often think that they know what is best for someone with a dis/ability or what that person would want or need. These assumptions are where well-meaning people frequently give advice about nutritional supplements, exercise, spiritual practices, etc. believing that if the person with a dis/ability would just do something differently, their dis/ability may be more manageable or may be “cured.” This advice, unless asked for, is mostly unwanted, belittling and at times degrading and damaging.

I don’t believe that any nutritional supplement or any diet, vegan or otherwise will clear up my schizophrenia. I also don’t believe that God is somehow punishing me, and if I just prayed more, or prayed the right way or put the Bible on my head and did a jig that God would heal me. I most certainly don’t think demons possess me.

If someone asks for your advice about diet, exercise, spirituality then that person is open to suggestions and ideas about those things. If someone doesn’t ask, it is possible they are already getting the best treatment available to them, and those types of comments will come as an insult even though they were not intended that way.

When someone says, “If you went completely vegan and gluten free, your symptoms would clear up,” those of us with a dis/ability hear, “You don’t know your illness. You don’t know your body. Your doctors (even if they have been working with you for years) don’t know as much as I do. You aren’t doing everything you can to be “well.””

When you have an illness and are open about it, people will say all kinds of well-meaning things that don’t land on our ears or heart or mind in well-meaning ways. The most harmful thing that people say to me and someone says it every few months is “You don’t have a mental illness. You are full of demons.” What I hear when someone says that is, “God doesn’t love you.”

Saying a person with schizophrenia has demons is particularly cruel because we frequently experience delusions and hallucinations that have to do with God or religion. After those episodes are over, if we still want to practice our faith, we have to figure out by ourselves how to get back to a sort of mainstream Christian belief system (or whatever religion that person practices – I am Christian and have only heard this from Christians). If schizophrenia was caused by demons and not an illness why wouldn’t more people struggle with it, and as I always ask, why would medication be able to chase demons away?  Are demons opposed to living in someone who takes anti-psychotics?

I don’t assume I know what life is like in a wheelchair. I don’t assume I know what life is like with MS. I need to ask people who have a dis/ability that is different than mine questions and not hit them with answers. Hitting someone with a dis/ability with an answer before you know their circumstances, symptoms, struggles, is giving them one more thing to feel misunderstood, isolated, angry, or other negative thoughts and/or emotions.

My life is good, and so are many other people’s with dis/abilities, but like everyone else, we don’t need one more thing to drag us down. I try not to be a weight to others, let’s all try it together and maybe all of our struggles will seem lighter as we enlighten each other about the thing we know best – ourselves.

New Post on Psych Central

23 Monday May 2016

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

≈ Leave a comment

Tags

advocacy, Advocate, artists, bipolar, Bob Dylan, discrimination, feminism, feminist, genius, mental health, mental illness, music, psychiatry, psychology, schizophrenia], stigma, writing

I have a new blog post up on Psych Central. It is about being an imperfect advocate. It mentions Bob Dylan, feminism, and stereotypes.

I hope you will pop over there and read it.

http://goo.gl/Ot4wtb

On Ignorance, Outrage and xojane (CW:Suicide)

21 Saturday May 2016

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

≈ 12 Comments

Tags

articles, bipolar, essays, hope, mental health, mental illness, mentally ill, psychiatry, psychology, schizophrenia], suicide, writing, xojane

Earlier this week an article was posted on xojane’s web page titled, “My Former Friend’s Death Was a Blessing.” I would link to the article, but it is no longer there. An apology from the editor is in its place. The premise of the article was that a young woman’s death was better than living her life with a mental illness.

When I first read the article, my breath caught in my throat, and my heart started to quicken. “Is this real?” I asked. “The author thinks people with a mental illness are better off dead?” I spent the remainder of that day reading responses and posts from all across the Internet. The reaction was swift. The outrage was real.

I wasted a whole day feeling bad knowing that some people believe mentally ill people are better off dead than alive.

I read the article again. The article is the voice and opinion of one woman, a woman who doesn’t know the symptoms of mental illness. The writer seemed to sloppily include details in her essay to try and prove what a “miserable” life her former friend had. She includes things like a messy room and Facebook posts, and claims the woman was delusional but doesn’t give any examples of specific delusions her former friend had.

It was a poorly written article by an extremely ignorant person. I am certain the author knew it would be controversial, but I am equally certain she knows nothing about mental illness. In an interview with the Daily Dot, the author said, “Do you know the laws in America? You can’t just put away mentally ill people even if they need help.”

Those “mentally ill people” happen to number in the millions, and when you consider all of their loved ones and friends, the number of people touched by mental illness is probably at least half of the population. After all, one in four Americans suffers from a mental illness in their lifetime.

I have frequently written that the Internet lights up and shoots fire every time there is a racist or homophobic article (rightfully so).  I have also pointed out that this isn’t the case when horrible stuff is written involving the mentally ill. I have never seen outrage over the use of the words, crazy, psycho, tinfoil hat, insane, psycho, etc. Those words are common in our interactions on the Internet and our speech.

I have constantly felt on the outside. I have frequently felt that me, and people like me, are the punch line of people’s jokes, and little is being done to change this culture.

How fitting that the Internet finally responded to a hateful article written about the mentally ill during Mental Health Awareness Month.

What did I learn during my lost day trying to process this article? Some people (a whole lot of them) care about the mentally ill as much as they do about all of us considered “others.”

People care!  Damn, I couldn’t be happier to know that. The outrage was beautiful. Thank you to everyone who wrote a response, left a comment, and wrote to the editors. That article said I would be better off dead and thousands and thousands of you proved that you don’t believe that.

I’ll take a poorly written article that shows the author’s ignorance any day if that article is going to receive the kind of response that “My Former Friend’s Death Was a Blessing” received. I know now that most people care about all marginalized people and not just some. I know now that people will speak up and fight for me and those like me.

We matter. We matter. Damn right, we matter.

Thanks, people. Thanks every single one of you. This writer’s heart broke open and saw goodness, compassion, and care in ways I’ve never seen it before. The ignorance doesn’t sting as much when I accept and acknowledge all of the support.

Thank you.

We can combat ignorance and hate against all people, one article at a time.

Links to a few of the responses:

Salon: http://www.salon.com/2016/05/20/worst_personal_essay_ever_xojane_scrapes_the_bottom_of_the_hate_read_barrel/

Jezebel:

http://jezebel.com/xojane-publishes-terrible-article-by-a-woman-who-s-glad-1777778960

Luna Luna:

http://www.lunalunamagazine.com/blog/xo-jane-former-friend-death-was-a-blessing

 

 

 

Two Very Good Articles About Schizophrenia

18 Wednesday May 2016

Posted by A Journey With You in Uncategorized

≈ 6 Comments

Tags

articles, blogs, interviews, mental health, mental illness, mentally ill, Psych Central, psychiatry, psychology, schizophrenia], writing

I was interviewed for both of these articles. I think they are very well written and incredibly informative.

Lesser Known Schizophrenia Symptoms Which Actually Have a Great Impact.

Outdated Notions About Schizophrenia.

FYI- I will resume writing on my Psych Central blog tomorrow.  I will post a link here to new content.

 

 

 

 

Good Housekeeping, Woman’s Day and Dr. Oz

16 Monday May 2016

Posted by A Journey With You in articles I wrote, mental illness, schizophrenia, stigma, Uncategorized, writing

≈ 8 Comments

Tags

articles, essays, hope, magazines, mental health, mental illness, mentally ill, psychiatry, psychology, published, schizophrenia], writing

An article I wrote came out on three national publications today.

I didn’t title the article. I don’t identify with the word, “schizophrenic” as most of you know. I prefer to be address as a person who has schizophrenia.

Here is the article on Dr. Oz. 

Here is the article on Good Housekeeping.  

Here is the article on Woman’s Day.  

I would love it if you would read it and share it.

Thanks!

 

When The Bluebird Sings (Trigger Warning -Suicide)

15 Friday Apr 2016

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

≈ 23 Comments

Tags

bluebird, death, depression, mental health, mental illness, mentally ill, psychiatry, psychology, schizophrenia], song bird, spirit animal, suicide, symbolism, trigger warning, writing

The bluebird is a messenger of the Divine. They fly side by side with angels. (From Universe of Symbolism)

I just hung up the phone from talking to my brother. One of his friend’s, daughter also had schizophrenia.

Sing me a song bluebird.

I say had, because she found a gun, found the cartridge, put the two together, took a walk and never came back.

Sing me a song bluebird.

Her father goes through all the “what if’s” and the “if only,” his pain so raw and his mind searching for answers.

I know the voices she heard. I know the terror. I know the fear. I know how they tell you to take your own life. They demand it, and some of us give in. Fighting voices is a serious battle, one some of us will never win.

Sing me a song bluebird.

I find her on the path where her body was discovered. I hold her in my arms. I want to tell her, “Don’t give up. Don’t give in. Beautiful girl there can be love, there can be children, and there can be a career. There can be sunsets, and harvest moons, and a swim in the ocean. There can be life. You were barely past childhood and the oyster would reveal her pearl to you, in time.”

Sing me a song bluebird.

All of us who live with schizophrenia are warriors. Sleep little warrior. Dream. Dream of us all in a place where there is quiet but no desperation. Dream us all in a place where there is light but no interrogations. Dream us all in a place where our minds are not the enemy but the connection to our heart and to our joy. Dream. Dream. Dream.

Sing me a song bluebird.

Sing me a song, show me a sign. 

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