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A Journey With You

Category Archives: relationships

My Latest Article on The Mighty

03 Monday Dec 2018

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

≈ 2 Comments

Tags

gratitude, marriage, mental illness, mentally ill, mindfulness, partners, relationships, schizophrenia], wellness

I’ve written many pieces about the challenges of being married and having an illness like schizophrenia. Here is one of my latest pieces on The Mighty. Those of you who have followed my blog for a while will likely find this similar to things I have written before.

One Simple Thing and Our Lives Just Got Easier

27 Tuesday Nov 2018

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

≈ 4 Comments

Tags

assumptions, caregivers, chores, decorating, diet, exercise, mental health, mental illness, metaphors, schizophrenia], shopping, wellness

Twelve years ago, when my husband and I moved to San Diego, we bought a California king bed for our new apartment. Six months ago, my father-in-law sold his condominium and offered us his almost new king-sized bed. When my husband measured the two beds to make sure that the new one would fit in our room, he noticed that something was wrong. They were different sizes. He guessed that his fathers was a standard king and that is why it was different than ours, but his father’s bed was longer than ours. When he investigated further he discovered, our bed was a standard king, and his fathers was a California king.

For twelve years we had struggled to make the bed. We never found a set of sheets that fit correctly and after a year or so they would end up ripping at the corners. It was a constant battle to keep the fitted edges tucked in, and almost every night the sheet would pop off on mine or my husband’s side (usually mine because I toss and turn more in my sleep) — twelve years of battles.

Last week we received a Target gift card and went to the store and bought a set of red stripped flannel sheets in a standard king size. We washed them, then made the bed, and they fit perfectly. There was no pulling, tugging and stretching the corners to get the fitted edges over the side. Making the bed has become a breeze, and we no longer have to lift the mattress and stretch the elastic over the corner each morning when we wake up. We received another Target gift card a couple of days ago and went and bought two more sets of standard king-sized sheets and we boxed up all of our old linens to donate to Goodwill (I doubt they take bedding, but we will try).

I thought the story of our bed was a perfect metaphor for so many things in life that destroy our well being, damage our relationships and chip away at our self-esteem. Have you ever thought something about a person and struggled to make them fit your idea? Have you ever thought something was good, or right and wrestled to make yourself fit the mold? Have you ever wanted to be two to three sizes smaller and dieted and worked out, but never fit into the clothes you were dreaming about?

Twelve years of struggling to make the bed combined with dozens of torn sheets – throw out the assumptions and expectations and measure the darn bed! In other words, toss the assumptions, check the facts, and if they don’t match up, go to Target and remedy the situation.

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.

To Older Siblings Everywhere

17 Wednesday Oct 2018

Posted by A Journey With You in heroes, relationships, Uncategorized

≈ 8 Comments

Tags

birthday, brother, brothers, childhood, elementary school, family, growing up, memories, parents, school, sibling, siblings, the wonder years, tribute

Do you ever think about your childhood and what your life was like then? I am decades away from living in the pink house, across the street from an elementary school, where I spent seven of my childhood years (from age 3 to 10).

I think about that time, with a chicken coop out back full of hens and a rooster or two; the garden that provided us with almost all of our vegetables and enough cucumbers, green beans, cauliflower, and carrots for many dinners and pickling. There were the apple trees, plum tree, and apricot trees, and a patch of strawberries and rhubarb. I’ll never forget picking tomatoes out of the garden and biting into them as the juice made a path across my dirt covered face.

It isn’t the fresh food I remember most, though or the smell of lilacs that wafted through the yard in spring. What I remember most is life with my three older brothers. I remember the times I was allowed to play with them or tag along with them, and the times I was told, no and was left behind.

Today, my oldest brother, Joel, turns sixty and it is his birthday that has me wandering back to the house where we all lived together under one roof. A house where the walls and floors and paint and furniture held our laughter, our secrets, our dreams, and our tears. At times blood tied us together, and at times life, anger and choices tore us apart.

My brother Joel had a pet mouse, a pet rat, pet snakes, played baseball as a catcher, and kept more than a dozen Reese’s Peanut Butter Cups in the freezer and instructed his younger siblings not to touch that chocolate.

I looked up to my oldest brother, and I listened to him. Listening to Joel was a problem, though because he liked to tell stories. Stories weren’t for lying, although he occasionally received a spanking for that, his stories were made up to entertain himself and anyone else who would listen. I was always a willing audience.

Joel once sent me to school with a bottle of mouthwash (I didn’t know what it was) and told me to drink it for superpowers like running faster or jump roping longer. He told me it was “White Lightning,” a magic potion. You can imagine how well my bottle of white lightning went over with my teachers in elementary school.

At school for show-and-tell, we were instructed to bring things from home that started with the letter, B. Joel went through our whole house and collected everything from baseballs, books, batteries, brushes, etc. and sent me to school with bags full of things that started with a B. I brought at least ten times the number of items of any other kid.

Another time for show-and-tell, Joel sent me to school with a record by Shel Silverstein. He wanted me to share the song, “Sarah, Cynthia, Silvia Stout.” It is a song about a girl who will not take the garbage out. The song is very funny, and my class loved it and wanted to hear the other songs on the record. Well, some of the other songs, contain adult language and themes and once again, I upset the elementary school teachers.

Having older siblings almost ensures that you will know things teachers don’t think are age appropriate. That means getting in trouble for being “ahead of the class” in things like anatomy and sex.

When our time in the pink house came to an end, and my parents went different ways, my brother Joel stepped in and took care of all of us in ways he was too young to do. At night before bed, he would drive my brother, Andrew, and I out to the neighboring town so we could see our mom at her waitressing job and she could kiss us before he took us home and put us to bed.

There are a thousand other memories; feelings, images, familiar smells, favorite foods, least favorite foods that bring back the time we shared under one roof. Good times and bad times. Happy times and hard times. But in the end, there is nothing quite like having an older brother.

Giveaway: Journal/Workbook

13 Saturday Oct 2018

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

≈ 12 Comments

Tags

bipolar, book, coping, exercises, giveaway, hope, journal, mental health, mental illness, recovery, remission, schizophrenia], wellness, workbook, writing

I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.

20180921_104418

“…talking Away. I Don’t Know What I’m to say. I’ll say it Anyway” Lyrics from a-ha

08 Monday Oct 2018

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

≈ 4 Comments

Tags

bipolar, brain disease, communication, community, groups, mental health, mentally ill, schizophrenia], social media, support, talking, wellness, women

I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.

Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.

Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.

These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.

Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.

It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.

Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.

So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.

In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.

But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.

I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.

If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.

If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.

Netflix’s Maniac From the Perspective of a Person with Schizophrenia

24 Monday Sep 2018

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

≈ 6 Comments

Tags

Art, characters, Hollywood, Maniac, mental health, mentally ill, movies, Netflix, schizophrenia], shows, stereotypes, television

I spent the weekend binge-watching and reading articles written about the new Netflix series Maniac. From Slate to Rolling Stone, none of the writers for the magazines loved it as much as I did and not one of them gave enough attention to, what to me, was the most important, groundbreaking, enduring, and thrilling part of the whole show. The gem I am referring to is, there was a character who has paranoid schizophrenia (like me) and wasn’t a cookie cutter stereotype like almost every other character written into a movie or television show where the writers try to explore one of the most stigmatized and baffling of the mental illnesses.

As someone who has lived with paranoid schizophrenia for over two decades, I wouldn’t say I am an expert, but I do know a thing or two about the disorder that writers usually get wrong, mess up, or rely heavily on worn-out stereotypes like the mass murderer, the genius or the lovable clown.

One of the main characters (Owen) is sensitive, frightened, unsure, intelligent, heroic, courageous and has a sense of integrity and insight into his illness. I have never been more excited or pleased to see schizophrenia on the screen as I was this weekend.

Don’t get me wrong; the writers don’t ignore some of the more troubling symptoms of schizophrenia for example hallucinations, delusions, conspiracies, seeing patterns in random events, and the desire not to take medication. All those details are there, but so is a likable and complex character that people can imagine wanting to get to know it real life.

The show also deals with addiction, borderline personality disorder, loss, grief, and complicated relationships as well as a wide range of emotions. I found it to be a playground of delight for those of us who for whatever reason, through necessity or curiosity, love psychology, therapy and the world of the mind. The scenes are graphic (two are reminiscent of Pulp Fiction) and many are colorful, fantastic and a treat for the eyes.

Maniac is easily my favorite show this year, and it ranks as my all time favorite show that deals in any way with schizophrenia and it may become one of the few shows that I watch multiple times and put on my list of best I’ve seen.

 

A Guided Mental Illness Journal & Workbook: Build Confidence and Coping Skills

23 Sunday Sep 2018

Posted by A Journey With You in articles I wrote, bipolar, caregivers, heroes, hope, mental illness, relationships, schizophrenia, stigma, travel, Uncategorized, writing

≈ 10 Comments

Tags

anxiety, Art, artists, author, exercises, healing, heath, hope, mental health, mentally ill, recovery, schizophrenia], self care, self-confidence, wellness, workbook, writing, writing prompts

Here is the cover of my new guided journal/workbook. It contains writing prompts, tasks, and exercises to think more creatively, increase motivation, learn new skills and basically help you think past the symptoms of mental illness. I will be donating 10% of my royalties to Third Avenue Charitable Organization (TACO) to help with the work they do with the homeless and low income in my community. Many of the people they serve have a mental illness. The workbook is available on Amazon.

20180921_104418

An Invitation to Normal

29 Wednesday Aug 2018

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

≈ 3 Comments

Tags

brain disease, daily, friendships, happiness, health, hope, mental health, mental illness, mentally ill, normal, relationships, schizophrenia], wellness

On Sunday night, I went to a Rod Stewart and Cindi Lauper concert at an amphitheater approximately twenty miles from my house. My husband and I took two of our friends, and before the concert, the four of us had a picnic (tailgated) in the parking lot. Our seats were lawn seats, but even though those are the cheapest seats, it was a great place to sit because the lawn is sloped, you can easily get up and dance, and there are plenty of big screens so you can see what is happening on stage in case you forget your glasses like I did (oops!).

My husband didn’t listen to Rod Stewart as a teenager, but one of my friends and I knew almost every word to both artist’s songs. I suppose there is nothing remarkable about going to a summer concert in Southern California, sitting on a blanket on a warm night, sharing a carafe of wine (I’m the only one who doesn’t drink because of my medications, but I had water!). I guess to most people, that would be pretty normal, and that’s my point.

If you want to help someone with a mental illness, include them in the plans you make that are “normal.” I can’t do or go everywhere because of symptoms but some of the best times I have are just participating in things that others take for granted like movies, concerts, coffee shops, a lunch date, having someone drop by my house because they are in the neighborhood.

When I read the comments from people with schizophrenia in the groups that I am a member of, one of the main complaints is that people are lonely. I know that having a friend with schizophrenia can seem different, uncomfortable, or odd, but most of the time people won’t have to “work” at the friendship or accept any more idiosyncracies than they would with any other friend. You know your friend who is always late? You know your friend that double dips their chip in the salsa or hummus? You put up with those behaviors and end up saying, “Oh well, that is just so and so.”

Those of us with schizophrenia can be a “so and so” to you too. I have to get past uncomfortable feelings every day; maybe it’s time we all try to do it and include someone with a mental illness in our plans

Changing the Landscape of Normal

20 Monday Aug 2018

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

≈ Leave a comment

Tags

chronic illness, chronic pain, health, hope, marriage, mental health, mental illness, relationships, schizophrenia], vows, wedding, wellness

Most marriages start from a position of equality. Both partners are expected to “pull their weight” and contribute equally to the relationship. I can’t think of anyone who wants to build a partnership of lopsided responsibilities. Over time, with illness and age, a vast discrepancy between one person’s contribution and the others can develop, though, and the reality of one person taking on more in the relationship than the other is likely the longer the two are together.
That’s the norm. That’s the expectation. We start out young, healthy and happy and we grow old, or sick together, the stronger caring for the weaker depending upon what ails us.
My marriage never started this way from the beginning though, and with one in four American suffering from a mental illness and half of Americans suffering from a chronic disease, the landscape of what is normal, or expected is changing.
In my house, we concern ourselves every day with medication times and the amount of food eaten with each dose. We live around these details. We go to the doctor every few months for blood draws and check-ups and visit the pharmacy to refill medications once a month. Those are the most visible signs of illness in our house, but they are not the most difficult, or challenging.
It is the panic attacks that can derail brunch with friends, or cause a cancellation of a six-month planned vacation that is harder to live with than the daily maintenance. The most terrifying and difficult thing though is the possibility of a break from reality. There are no classes or preparation for a spouse that has an episode of psychosis that can be brought on by trauma, addiction, bipolar disorder, or in my case, schizophrenia.
My husband would be more than uncomfortable with the label of caretaker. That title just doesn’t suit him when it comes to our relationship and the reality of us. My husband has the chronic illness sarcoidosis, and when he gets sick (which is frequently) I am the one who makes him honey and lemon tea, checks his temperature and calls the on-call nurse to see if we should go to the doctor, etc. I  am also the one who cheers him on when he gets a promotion or award at work. I am his biggest fan and the number one person who looks out for him.
My husband has a more significant role in the caretaking arena than I do, but the reality is we care for each other. His illness is more easily understood than mine, and the symptoms are more socially acceptable (he doesn’t hear voices, or believe he is talking to God). But if social media is an indicator on how far we have come to overcome stigmas and fixed notions of relationships that are a carryover from the past, then we have made progress. Not a single day goes by when I don’t read about someone struggling with anxiety, autism, mania, depression, or hallucinations on social media. There is some truth to the fact that otherwise private experiences are now put out in public for all to consume.
With so many Americans dealing with physical and mental health issues, the landscape of partnership, spouses, marriage is changing. What was once said by most couples getting married, a vow to care for each other in sickness and in health, is now more of the given than a promise we make to each other to be cashed in on at some distant point in the future.
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