Tag Archives: inspiration

A Dream to be Fearless

24 Friday Feb 2017

Posted by in mental illness, schizophrenia, Uncategorized, writing

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Suffering. I suffer. You suffer. We all suffer. An illness. A loss. Hunger. No shelter. Bombs. Loneliness.

I frequently say, “Why can’t suffering be doled out equally?” Like if you have a severe mental illness you don’t also get a chronic physical illness, or if you lose your child, you don’t also lose a spouse. The world doesn’t work that way, though. And you can’t equate the loss of a child, or war, or starvation to schizophrenia. Suffering is not equal.

My diagnosis of diverticulitis almost two weeks ago, made me momentarily think that I shouldn’t have to deal with physical illnesses and a severe mental illness, too. For a short period, I felt bitter and sorry for myself.

I don’t like feeling bitter, or sorry for myself. Bitterness and self-pity do not suit me or feel right for any length of time, but beyond these feelings is an even more destructive force: fear.

Feelings don’t just fly away. There are times when we need to work to get our feelings on track (I certainly don’t mean you can think your way out of a mental illness, only that you can think your way out of some feelings both negative and positive).

So, I need to find a way back. A way to put my troubles in perspective, lighten my mind, heart, and soul. What I want to be is fearless.

When I was in the emergency room at the hospital, anxiety overcame me. My pulse rate was well above 100. I have felt that same anxiousness since that time. I am hyper concerned about the diverticulitis acting up again and sending me back to the hospital. During this time, I have had back problems for two months. I can lay down and stand up, but I can’t sit. I even stand at restaurants to eat (we haven’t gone out much lately). I am standing while typing this.

But back to fearless. I don’t want to be anxious or afraid anymore. I want to develop a skin of steel. Going to the doctor and hospital terrifies me. I want to overcome that. I want to be strong and brave and courageous. I want to laugh in the doctor’s office and make them laugh, too. I want to whistle no matter what the diagnosis or outcome. I don’t want to be afraid. I don’t want to be concerned.

Concern, anxiety, fear and worry have taken over my life these last two months. I have stopped doing the things that bring me joy because I feel an ache here and pain there and the worry begins. I am concerned by every bite of food I put in my mouth, thinking it may cause another infection in my intestines. I fear sitting down because it can cause my back to hurt for hours or even days.

I know it will take small steps to get me back to the laughter I so frequently enjoy. I know it will take time removed from these illnesses and pains to help my mind heal from their impact. I know all of this, and yet, today, I am going to get out of the house, experience a little living, get on with things.

Today, I step out, slowly, surely, and purposefully. I am re-entering the world. I miss my joy, and I want it back. I may never be completely fearless like I dream and desire, but I’m moving toward that goal – one toe out front – the rest of me is not far behind.

Choosing a Word for 2017

03 Saturday Dec 2016

Posted by in schizophrenia, Uncategorized, writing

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Last year, around this time, I picked a word that I hoped would define 2016. I picked the word, “ATTEMPT.” It is written and posted on my wall in black and red ink on the left side of my computer. I have looked at it all year. It has not defined this year at all. I did, attempt to go to work several times. Remember the Amazon Prime Now job I landed and didn’t make it through the first day? There were others as well. Regarding employment, I guess I did attempt to become employed. I didn’t attempt much else, though.

One of my big goals for 2016 was to have an essay about something other than schizophrenia accepted to a literary magazine. Well, I was successful at reaching that goal. I had The Extraordinary Ordinary Death published in Angels Flight: literary west. The essay will be published again in a book by Brightly Press early in 2017.

I think much of this year I was distracted, nervous, concerned, and extremely anxious about the election. The campaign was horrible to watch as the country dove nose first into vulgarity, intolerance, and division. I hated it. I hated watching it, and the leftovers of it, along with the increase in hate crimes and hate speech, fake news, possible corruption, and scandals, has torn a hole in my heart that I am not sure will heal completely. If that hole does heal, the scar tissue it leaves will forever impact the way my pulse beats. Much of what I thought about America may not be true, and because I love this country so much that is like a loss or like surgery, a removal of something dear. I want a breather from bad news, but it seems to come at me daily.

Because my word for 2016 was so inaccurate in defining the year, I wasn’t going to choose a word for 2017, but then I decided to give it one more try. At first, I thought I would choose the word, “RESIST.” I felt like I could work toward resisting intolerance, hate, division, despair and I felt like I could try my hardest to resist my symptoms of schizophrenia. When I say the word, it hits my ear as negative, though. I feel as if the word will make me feel as if I am constantly fighting. I don’t want to spend 2017 pushing against everything, some things, yes, but not everything.

I thought about choosing the word, “HOPE.” Hope is a word that makes me feel like the cliché: light at the end of the tunnel. It brings me thoughts that everything will eventually be okay. Hope is a good word, but I didn’t feel it would push me to act. I need 2017 to be a year of action. I need to do more. I need to work harder at advocacy. I need to work harder at my writing. I need to send more work out and write more letters to politicians and government officials. I would like to have even more of my writing that isn’t about schizophrenia published (this is important to me because it means I can define myself first as a writer not someone with schizophrenia).

For all of these reasons and much more, I am choosing the word, “ACT.” To act is what I hope for in 2017. Do you have a word for 2017?  If not, will you join me in ACT(ing) out the steps that make your dreams possible? Let’s ACT out the best people we can be, today, tomorrow and all of 2017.

Having Schizophrenia Doesn’t Mean the Stars are out of Reach

25 Tuesday Oct 2016

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

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The last two nights while we were eating dinner, my husband and I did some “couple’s exercises” just for fun. One of the things we were asked to do was tell each other our whole life story in four minutes. My husband started. He said he came from a traditional Catholic home in Lebanon. He talked about the stability of his life up until the war broke out when he was ten. He went on to talk about boarding schools and the American high school he went to in Cairo. He spoke about college in the United States and moving to Southern California. He went on to meeting me, getting married and ended with the present day.

When it was my turn, I talked about one of the things I love most about my life and that is spending the first eleven years in a small town in a blue collar environment and then when my mother remarried starting to travel and see the world. Having both of these vastly different experiences has made it possible for me to relate to the working class and also the more privileged.  Spending time living in Egypt helped me to understand different parts of the world and to look at American culture from the outside. I also talked about my first marriage and divorce, and then meeting the love of my life my husband/partner and up to the current day.

As soon as I was finished telling my condensed version of my life story, it occurred to me that I never mentioned schizophrenia. I said to my husband, “I never once mentioned my illness. It never came up in my story.”  Surprised, he said, “I didn’t mention it either.”

Even though we live each day around schizophrenia; we schedule our meals around medications, try to limit my stress, make sure I get enough sleep, deal with my symptoms when they are present and one hundred other life-disrupting things, none of that seems to matter in our bigger life story.

I find the fact that neither one of us thought to bring up schizophrenia in our brief telling of our history as an encouraging and hopeful truth. My illness isn’t what is important or significant or memorable about our lives. Even though we manage it in as responsible of a way as possible, it doesn’t run or rule our lives the way I thought it did. It is an afterthought to the things we find important.

I think my husband and I have truly found a balance with living with a severe mental illness. On the one hand, we do everything possible to limit the negative impact of that illness on our lives which means sticking to routines and making many choices about travel, events, etc. On the other hand, none of those choices and sacrifices is what we focus on when we are considering our whole life; the precautions we take and hours we spend trying to get me through a tough patch of symptoms doesn’t even warrant a mention in the telling of the story of our life.

I have always said that my life is more than schizophrenia and I have proved to myself that I  believe that and behave in a way that makes that statement true. Those of us with a severe mental illness must create a life that reaches beyond our diagnosis – we need to stretch up and out and cultivate experiences that have nothing to do with our illnesses. Let’s do what exceptional people all over the world do, let’s reach for the stars and even if we never touch them think of all the benefits we will gain from trying. Tonight’s sky will be full of stars, let’s all look up at them when it turns dark and dream our most creative dreams and then let’s take the first step to making those dreams happen. If we do this, we will be one step closer to touching a star and that step can be the one that puts us within reach.

 

Atheists and Me

05 Monday Sep 2016

Posted by in Uncategorized

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I don’t usually talk about my faith or politics here. I have strong feelings about both, but this blog has never been about that. So, if you are uninterested in issues of faith, then skip my latest article on Patheos: No Matter How Smart They Think They Are, Atheists Don’t Shake My Faith.   If you have an interest, pop over there and let me know what you think – either way, I hope you are healthy in body and mind.

Can Something as Simple as Cupcakes and Humor Hold a Marriage Together Under The Pressure of Incredible Odds?

30 Tuesday Aug 2016

Posted by in bipolar, hope, mental illness, relationships, schizophrenia, travel, Uncategorized

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My husband suffers so much disappointment due to my illness, but he would never say that, or even show it. I know and can see that it is true, though. When we first met, I would drive from Seattle to Los Angeles by myself to visit him. I haven’t driven a car in the last eight months. My husband and friends drive, or I take the bus or walk whenever I have to go out.

Cupcakes and humor.

When we first started dating, I would fly (even overseas) by myself. Now, when we travel we have to plan the trip around certain times of day (less anxiety), and we have to pack and prepare in ways to try to make the trip as pleasant and as smooth as possible. I almost always am overcome by anxiety at some point in every trip (usually at the airport and on the airplane).

Cupcakes and humor.

I was once so independent compared to how I am now. I was once so social and active. Now, we spend a lot of energy to make sure that my life is as stress-free as possible to keep symptoms at a minimum. I stay at home and have very little stress or interactions during the day. I even limit what I post on social media to avoid confrontation with others (stress).

Cupcakes and humor.

I know my husband would enjoy socializing more, but I will rarely agree to go with him (isolating socially is a real symptom of schizophrenia and one that has increased in me every year). There is so much my husband enjoys that he has given up to help provide me with the kind of environment I need to give me the most symptom-free existence.

Cupcakes and humor.

For all the sacrifices my husband makes, I try to be a supportive partner when I can. Once a month my husband asks me to make cupcakes because he has taken it upon himself to celebrate the birthdays of everyone in his office. My husband reminds me on the last Monday of every month, “If you feel up to it tomorrow, can you please make cupcakes?” It wouldn’t matter if I were suffering from my worst symptoms I would try not to let him down by having the kitchen counter free of the little cakes that help him lift the morale of his coworkers. It is so little to ask of me. In the past six years, I have never once let him down.

Cupcakes and humor.

When I am comfortable, I make up random songs and sing them constantly. I am a terrible dancer, but I love to shake a little booty with absolutely no sense of rhythm while walking from one room to the other in the house. I love to tell a lively story about anything and everything. To make this simple, I love to see my husband break into a belly laugh or at least a big smile, and no one can do that to him the way I can. So yes, it is the simple ingredients that hold even strained marriages together. May I suggest Cupcakes and humor?

Writing Beyond Our Illnesses

29 Monday Aug 2016

Posted by in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized, writing

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A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.

After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.

I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.

I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.

As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.

I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.

Happiness is not rare, but it isn’t always easy.

 

 

 

 

The Secret to Writing

26 Friday Aug 2016

Posted by in Uncategorized, writing

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For hours I read the descriptions for writing classes. I look at UCLA Extension classes. I look at Gotham Writing Workshop. I look at the offerings of the non-profit writing organization in my city. I spend hours searching for online writing classes and writing groups in my area. I attend as many writing workshops as I can afford. I am searching. I am looking for discipline. I am looking for a magic pill or bullet that will keep me in my chair every day writing essays, prose poems, blog posts, articles. There must be a trick to being productive. It doesn’t help that on Facebook I am friends with a wide network of writers. Those writers report their daily word count: 2500, 3000, sometimes more. I feel inadequate. I feel like a failure. I hire a writing coach.

I have to accept that I am looking for shortcuts. I am looking for a guru with the answers to being a writer, but no such guru exists. The only true guru would tell me this one word, “write.”  That’s it. I realize today as I am typing this that my problem is not that I need one more class, another critique, the input of one more teacher, assignments, encouragement, one more syllabus, or to participate in another workshop.

I need to sit down and do the work. I need to open a document and begin to type. I have been looking for something magical or mystical, some easy way out. There is no easy way out. It is just me, my thoughts, my hopes, my dreams, my words on a page that I either send into the world, or I don’t.

The time of reckoning is here: I either want to be a writer or I don’t. I either take this lonely step, or I give it up altogether. I think of all the money I have spent on advice. I think of all the time I have spent in classes. I think of how I was searching for someone to do the work for me. It doesn’t work that way. I need the determination. I need the motivation. I need to sit down and get down to business, the business of putting words on a page.

I have always believed that everyone has a book inside of them. I frequently meet people who tell me they are going to write theirs. I wish them well, I do, but this business of putting ideas on the page every day is not for everyone. It is both a pleasure and hard work. The words don’t always flow. The ideas don’t always make sense when you try to type them out. Not every piece is artistic or amazing.

I lost the ability to write for many years because I couldn’t focus while on my medication. I never want to lose that ability again. I don’t take this gift of time and the gift of desire for granted, but I have been looking for shortcuts and the path that has already been cleared for a few years now. It’s time to take out my machete, and start hacking away at the obstacles. No one can do it for me. I’m out in the jungle and the options are, move forward or stand still and perish without water.

I sat in my chair today, and I wrote. I wrote these words. I cleared the path a little bit. I took a step forward. Tomorrow, I hope I can make a little more progress, and after that, a few steps into the jungle each day.

It is work this writing, and although it is the best life I can imagine, I need to stop searching. If you want to write a book or make a living as a writer, you can pack your bags and begin to search for the best way to do that. But when you return home, you will find your computer waiting, and if you are lucky, there will be a sticky note on it that says that one word, “write.” And you will discover that you already had everything you needed before you left on your journey. That’s it. That’s all there is to it, “write.”

It’s so much harder than it sounds, you’ll break a sweat again and again, but that’s the secret, and it’s up to you to somehow find a way to turn it into magic one word at a time.

 

 

Learning Not to Make Assumptions Especially Regarding Dis/ability

23 Tuesday Aug 2016

Posted by in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma

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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.