Heroes Who Have Schizophrenia

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It’s true that I have frequently thought of Elyn Saks, John Nash, and Robert Pirsig as the heroes of schizophrenia, but as I was thinking about it today, they are great examples of people with schizophrenia who have contributed a substantial amount to the world, but they aren’t my heroes. The true heroes of schizophrenia are the people who live with severe symptoms every day and manage to write, have a relationship, cook, sew, tell stories, laugh, and joke.

When I hear voices, I get lost in a world that no one else can reach. People who hear voices every day that manage to continue to go out in public, talk to others, write, create, paint, etc., those people are amazing. There are also people who are medication resistant who have to live with all of the severe symptoms on a regular basis. These people, the ones dealing with the worst of schizophrenia, at all times, are the people that deserve to be held up as heroes.

It is great to be exceptional, the one-in-a-million like Saks, Nash, and Pirsig, but few of us can live up to those standards. The real hope for me, as I understand it today, comes from the people who persevere while living with debilitating symptoms. Those people are remarkable.

I do not include myself in this category of heroes. I have symptoms every day that interfere with my ability to work, ability to drive, to travel, to socialize, but I still feel like I am lucky because I don’t hear voices on a daily basis and I don’t hallucinate on a daily basis. I have to white-knuckle myself through anxiety and paranoia on a regular basis but…

I am not going to downgrade my own experience here. I am just going to say that those people who are medication resistant or who are experiencing voices or visual hallucinations and still manage to have the will to live are the people I look up to.

Schizophrenia is tough. It is hard. It is brutal, and you have to be fierce to live with it. There are times that I am so scared and so anxious that I think I am going to die of fear. I have to walk through those times alone. My husband can comfort me, but he can’t take away the feelings from me. You have to be a warrior to live like that and then the next day set that experience aside to feel joy, or to write, or to laugh, or to be happy.

I always say that a diagnosis of schizophrenia is not the end of the world, but it is the beginning of so many things that will probably be the most difficult things someone will have to do. And doing difficult things on a regular basis can make you tired, but then there is no time to be tired because you always have to be ready to take on the enemy.

So, those people who live with the most severe symptoms every day, are my heroes. I’ll just leave that sentence the way it is, right there, for everyone to see.

A Smile for Service Workers this Holiday Season

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Last night my husband and I went to the grocery store. I feel like I should tell you that I was hungry, the store was packed, and the lines were long. I feel like I should tell you that so you don’t think I am a horrible person, but that is the problem with this story. I’m not a horrible person and so frequently online, and in person, people will make you feel like you are horrible for the slightest things – one tiny misstep and you are someone marginalizing other people.

Here is what happened: I was walking through a crowded store with my husband looking for tea. I saw one of the men who works at the store stocking boxes, and I said, “Where is the tea?” He said, “Hi.” I said, “Do you know where the tea is?” He said, “Hi.” I finally figured out what he was trying to do and I laughed a little and said, “Okay, hi. Do you know where the tea is?” My laughter wasn’t because I thought what he did was funny. I thought what he did was try to force me to behave in a way that he preferred. Now, I know greeting someone before you ask them a question is a polite thing to do, but honestly, I wasn’t trying to be rude. I was asking a question of someone who worked in the store.

I feel like the man was trying to “teach” me some manners. I felt a little shamed and like a child. I also feel like if he can’t handle being asked where something is without a “proper” greeting, he probably shouldn’t work in a grocery store. I can’t be the only person who asked him the location of a product without saying hello that day. But, that being said, he was right. I should have greeted him first. I should always have the time and make an effort to recognize people’s humanity before asking or expecting something from them.

Honestly, I think you can tell the character of a person by how they treat people who are “serving” them – like in a restaurant. I try to be polite to everyone who serves me. I say please and thank you, and tip well at the end of the meal. I don’t think anyone is beneath me. Of course, the man in the store’s point hit me so hard that the next time I ask someone in a store a question, you can bet that I will greet them first. I think greeting someone first is a good policy, but I feel like we need to have some tolerance for people’s missteps, or mistakes without shaming them (I have written about not shaming people many times).

I guess I should be thankful that I now know that some people working at the grocery store feel mistreated by customers (although I always think of restaurant workers when I think of bad clientele, I never thought of a grocery store as having demanding or demeaning customers on a regular basis).

It is Christmas time, and it is a difficult time to be someone in the service industry, so I hope that my little story here will remind you that people are people and need to be treated with respect even when we are hungry, in a hurry or a bad mood. I just hope you don’t get forced or shamed into treating them that way – hopefully, the joy of the season will infect you, and you will naturally and spontaneously treat everyone with kindness, compassion, patience, and love.

Being Mentally Ill and the Holidays

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It’s the holiday season. An exciting and enriching season for some, and for others, the most difficult time of the year.

For those of us with a mental illness, it can be hard for various reasons. Being alone, or being away from friends and family is only one possible problem. There are those of us with anxiety issues that can become worse during the hustle and bustle of holiday parties, shopping, crowds, etc. There are those who suffer from depression that can deepen this time of year. There are those of us (and we are many) who isolate, and that means that invitations to parties, gatherings, happy hours, and volunteer opportunities, etc. can create stress.

I happen to love the holidays, but things at my house look very different than anyone else I know. My husband and I used to travel to relative’s houses and go to big family parties that included cousins, aunts, uncles, nieces, nephews, grandparents, and the occasional friend. Now, we decline invitations to those family functions.

A day or two before Christmas we check into a hotel, and the only traditions we recognize are the sharing of Christmas stockings (I fill my husband’s Christmas stocking, and he fills mine). On Christmas day, we take a picture of ourselves by the ocean and post it to social media (if you follow me on social media you know this is highly unusual for me because I never take selfies and I am not one to post too many updates on what we are doing).

Not sharing the holidays with family has created a few hard feelings over the years, but my husband and I have become more comfortable with saying no to people and taking care of ourselves as the years have passed. I guess you could say we are more selfish now than we were the first ten years of our marriage, but selfish seems too harsh a word for something you do to avoid stress, negativity, anxiety, drama, etc.

I like the no expectations of our holidays. I don’t have to cook, or shop, or bring presents, or be involved in anyone’s drama. We celebrate a drama-free Christmas Southern California style, and I love it.

My advice to anyone who has difficulties with the holidays is to make choices that make you happy even if those choices don’t make everyone else happy. I am all for spending time with family and friends and sharing my life, time, etc. with other people, but I will no longer do that at the expense of my mental health and my husband won’t either.

So, I am sure that some people think we are Scrooge number one and Scrooge number two, but they can think that while we walk on the beach Christmas day sipping coffee, holding hands, and wearing sunglasses to keep things from being too bright.

Sanity to Bring in the New Year

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The holidays are a good time for reflection. Thanksgiving encourages us to makes lists of what we are grateful for, and many of us reach out to the less fortunate and give our time and/or money. This attitude of giving stretches from late November until early January. We seem to think more about one another during this time, and there are more random acts of kindness.

During this season we also reflect on the past year and make plans, goals or a list of resolutions for the upcoming year. As I reflect on this past year, I have to admit I have been on edge and angry more than any time in the past. There is news of war, terror, mass shootings, natural disasters and lies filling our televisions, social media, newspapers, and magazines every day. I wrote a piece that was published in ROAR about fearing a nuclear war. I can’t ever remember such a heavyweight of bad news and fears to carry around on a daily basis. Combine all of this with my on-going breast cancer scare, and I have laughed less and cried more than I can ever remember.

Over the past year, I have snapped at my husband more. I have cursed at careless drivers with a vengeance. I have had less patience and more irritation with customer service representatives over the phone, and I have given countless dirty looks to dog owners who allow their dogs off leash or bring them into a restaurant, or grocery store (this simply grosses me out). I think I have been guilty of contributing to a world that is less kind, less compassionate, and less forgiving than it was a year ago.

I know that I am not alone in carrying a heavier load this year than last. Many of us know that critical changes are coming to our healthcare, but we are uncertain how it will impact us. Many of us have read the news and know that our taxes will be higher (I live in California where they have proposed getting rid of a deduction for income taxes) if the current tax reform bill passes. Many of us are frightened by the rise of nationalism and racism. So many of us can no longer peacefully and innocently gather in large crowds without at least planning a way of escape because of all the terrorism and shootings that seem to happen almost weekly or monthly now. There is so much happening. There is so much to make our minds uneasy. Peace seems distant and far away.

So I am here to say, there must be something I can do to get some of my joy back and remain engaged in the issues that plague our nation and the world. There must be a solution for me to be a part of creating more kindness, more compassion, more tolerance, less anger, more friendliness. I can make a vow to be nicer to the people I talk to on the phone. I can make a vow not to give the evil eye to dog owners who think mostly of themselves and not the comfort of others. I can try to tame my mouth when I see someone talking on the cell phone while driving (even though this is so dangerous and I find no excuses for it, and there is never a good reason to do it). I can smile at people I pass in the street even if they don’t leave me space on the sidewalk. And I can cut down my access to news. (This past year I have been in the habit of reading or watching news nearly all day and into the evening. I just can’t do that anymore and make a positive impact in the small circles where I have some influence).

I need to stay engaged in calling my senators, voting in elections and knowing the things that will likely impact me, my husband, my family, and millions of other Americans. I need to do that, but not at the expense of the little things, like buying a stranger coffee, thanking the barista who also shoulders most if not all of these things. And that is the secret for me. I am not alone. I am one among millions who are more uneasy, frightened, uncertain and feeling a tremendous burden. If I am unwilling to break out of this cycle of anger and upset, then maybe others will be unwilling too and our days will seem worse, not better.

I’m making an effort, starting right now to be a ray of hope, a streak of sunshine, a glow of compassion where ever and whenever I can. I have a feeling I will learn that I make a bigger difference than I have ever assumed, at least I hope so, and I hope to see that difference reflected back on the faces of people as we smile at one another in the street again.

It’s the holidays, a time to believe in the most powerful magic. As decorations go up all over the city, I’m believing, are you? I’m hoping for healing in my stocking this year, and I have the childlike faith to know that anything is possible – it really can happen.  We can refuse to be a part of the problem by choosing to be the salve on so many hurting, frightened, hearts. I believe even a smile can make it start to happen. We say it over and over again; it’s the little things, so let’s start a revolution of little things.

 

Non-Western Views of Mental Illness

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The recent terror attacks in Egypt reminded me of many things from my own life. Because the majority of people killed were Sufis, I thought about how I used to read poetry and stories written by the Islamic mystics.

Before I became psychotic the first time, I used to read a lot about mysticism, spirituality, and religion. I had several books about the Sufis (the mystics of Islam). I was fascinated by the poetry and stories of this sect of Islam. One story that I read (and I have never been able to find it again, and that alone would make a good Sufi story), was about a man who went on a “Sufi Journey.” In his travels, he had meetings with some Sufi masters. One such meeting was with a man, and at that man’s house, a woman was walking around in her nightgown unraveling a tangled ball of yarn. She walked, unraveled, walked, unraveled. When the man trying to learn more about Sufism asked about her, the master said something like; she needs to untangle the yarn. She will be fine. On his journey, he visited that master’s house a couple of times over a several year period, and the woman was always there, always in her nightgown endlessly trying to unravel the yarn. Years later he saw the same woman, she was a successful businesswoman in London, living a remarkable life.

When I read the story, the woman was described as someone who was mentally ill; possibly suffering from something like schizophrenia. Her task was to unravel the yarn, but you never really think she will and then amazingly at the end of the story she is living a “normal” life in a bustling city.

If you are familiar with Sufi writing, it often seems almost nonsensical. I think it is supposed to get your out of your regular or habitual form of thinking, to question, to seek, to accept mysteries. I read this story almost twenty-five years ago, and it stayed with me. I wish I could find the story again. I would like to read it now, as someone who has traveled the journey of mental illness for nearly three decades. I wonder how I would interpret the woman unraveling the yarn and being absorbed in that task so much so that she doesn’t dress or go out in public but wanders the property and house of a Sufi master?

Was the woman mentally ill? Did she recover? Is it possible that some of us must “unravel” in our minds in order to become a new person?

I rarely look at mental illness from other cultures or other perspectives. I don’t do this because there is no way I am going to stop taking my medications and walk a different path than I am right now. I must admit the way that non-westerners see mental illness is of interest to me at times even if I don’t plan to adopt a view outside the medical model.

If you happen to know this story, or where I can find it, please let me know. I think reading it again would be interesting. I wonder if my memory is as solid on this issue as I think it is?

Having Schizophrenia and my Take on Thanksgiving

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There is nothing original about typing up what you are thankful for this time of year; this is the season of Thanksgiving. People are making gratitude lists all over the Internet. I love to read these lists; I find them interesting. I’m not going to make a list. I am going to share a little about Thanksgiving and gratitude from the experience of someone who has schizophrenia.

It would be a lie if I said I never wanted to die. I have attempted suicide twice. It is true that those attempts happened before I was stable on medication, but they happened all the same.

Yesterday, I was unable to sit through a meeting because I had a panic attack. The day before that I was unable to eat spaghetti squash that my husband made because the unfamiliarity of it made me too paranoid to consume it. My mentor offered my husband, and I almost free room and board if we bought our airline tickets to Ireland (we would have stayed in a castle with catered meals), and I had to say no because I am afraid to go that far from home right now. She made a similar offer about France, and again, our answer was no.

I have so many limits, so many disappointments, and so many daily struggles and that list of negatives goes on. All of this, and I haven’t yet mentioned that my illness is the type people talk about in hushed voices. No one from the church or anywhere else sends us food when I am battling. It is so different than cancer, or heart disease. No pies, vegetarian meatloaf or mac and cheese.

I also have a disease where often the first thing people ask or think of when you tell them about it is, “Are you dangerous?” Those of us with schizophrenia, are frequently categorized as monsters by the media both in movies and on the news.

All of that, and it is a lot, and it wears me down, and it is difficult, but I want everyone to know, I am thankful. I am thankful beyond measure. I am married to the love of my life. I laugh and cry almost every day. I see the beauty and the pain on people’s faces as I pass them on the street. I take the time to look out the window, across the bay at the colors of the setting sun. I love eating potato chips with dip. I love apple and pumpkin pie. I am amused daily by Snapchat. I appreciate and savor a good cup of coffee, and there is more, so much more. The list goes on an on.

Yes, it is difficult to live with schizophrenia, but life unfolds its wonders and beauties to those of us who have a mental illness, too. Those of us with a brain disease have not been passed over by the glories of the universe, in fact, maybe at times we see them more clearly – it’s possible. Because of course, everything is possible even when you have schizophrenia.

Happy Thanksgiving. I sincerely wish you the best!

A Difficult Day With My Constant Companion – Schizophrenia

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Besides being psychotic, one of the hardest parts of having schizophrenia for me is making plans to do something like go on a trip, go to brunch, attend a conference, start a job, or any other normal activity and then have those plans completely shattered by anxiety or paranoia.

I had a simple meeting with an advisor today, and ten minutes in, I walked out and left everyone sitting there. I couldn’t sit one more minute, my heart was racing, and I couldn’t sit still. I walked to our car; I tried to lay down and rest. I walked back to the office where my husband and two other people were talking, and I sat down for a few minutes, and then I excused myself. I walked to Starbucks, bought a banana, ate half of it, sat in one of the lobby chairs for a few minutes then joined the meeting again.

Seriously? I can’t hold it together long enough to have an hour-long meeting about a topic that directly impacts my life and well-being? If I weren’t so stressed out, I would cry. I ended up making it through the last fifteen minutes of the meeting, and I am home now where I had to take an extra dose of medication to settle down.

When I was younger, I had many more episodes of psychosis, and except those, I had a much easier time carrying on with the daily details of life. Now, I can have the best intentions, and I am unable to see through some of the simplest tasks.

It is so frustrating, humiliating, and discouraging to wake up, feel fine, and start going about the plans for the day then to feel overwhelmed by anxiety or paranoia (most often anxiety). A panic attack can strike anywhere at anytime no matter what your intentions are or how important what you are doing is.

I know that I am lucky that I can sort out my thoughts enough to write articles and essays, but that is only a small part of being a functioning adult – there is so much that needs to happen on a regular basis, and so often I am incapable of making that happen.

My husband has endless patience with me, but I do not have the same patience with myself.

Today, was rotten, and I am feeling a little sorry for myself for having to live with the symptoms of schizophrenia. I’ll get over it, but I need this minute – can everyone just give me this minute, please?

 

What Responsibility do we Have to the Readers of our Social Media?

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Most people don’t think about the consequences of what they post online. We hear about it once a week or more; someone posted something that got them fired, or arrested. In other instances, people bullied or harassed someone, and their social media was shut down for a period. There are all sorts of examples of people doing “dumb” or even “harmful” things online, but what about the everyday posts? The posts about this great thing, that great vacation, this new promotion, that new car, etc.?

An old high school friend wrote to me on Facebook last night and said that a year or so ago he connected with a large group of us from high school after not hearing from any of us in over thirty years. He said the connections were great initially, but then he realized everyone had accomplished so much, but he had not. He said this realization made him feel so bad, that he got off Facebook altogether. I assured him that half of Facebook is a well-curated lie.

So many people only post the “greatest hits.” or highlights of their lives. You don’t see too many people post pictures of themselves running to the store without makeup, cleaning the toilet, or bombing that big interview or presentation.

My favorite Facebook friends are those people who post about the underbelly, dirty, difficult part of life. Those people who post stories about their medical problems, their children’s difficulties in school, how they had to eat Ramen for supper two nights in a row because they were having a hard time budgeting on their income.

I don’t want to think that people are having a terrible time. I don’t want to think that people are struggling and suffering on a regular basis. But I do want to know that life isn’t one trip to Europe, one trip to Cancun, one trip to Morocco, and then gourmet meal after gourmet meal after gourmet meal all while having the perfectly coiffed hair, nails, and makeup. And don’t forget if you eat the right things and take the right supplements and do just the right amount of exercise you too, can have perfect health (a myth that is so damaging).

We don’t owe anyone anything on social media, not in any real way. We can create and put forward any story about our lives that we want to. But if I have to chose which friends I would like in real life and which people I would reach out to help in a pinch, it is going to be those who occasionally post about life’s difficulties along with life’s pleasures. A little salt with that sugar, please.

Life isn’t easy or without suffering for anyone. The great equalizer in life is that we all die. The very fact that we must face our mortality should give us compassion for each other in ways that don’t seem to present themselves frequently on social media. I’m happy that everyone I know has some picture perfect moments in their lives, but I’m even happier to know that the people I like and associate with are human and have the occasional struggle. Somehow, and maybe it makes me a terrible person, I can relate to those who struggle more than those who constantly say they are sailing.

Looking for the Positive Inside the Negative (or mean people suck).

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There are times, especially with writing that I feel a little twinge of envy toward other writers; when someone posts their latest essay in the New York Times, or Washington Post, or other hard to break into publications. The envy I feel never outweighs the good feelings I have for them though, and the envy never clouds my wanting to support them, congratulate and see them succeed. The only other time I feel negatively toward someone is when they are a mean person.

I don’t understand mean people. I don’t understand what motivates them, or the thought process that leads up to them choosing to do something hurtful to another person. I simply don’t get it, and maybe that is a good thing, but it feels like a disability – that not understanding.

When people are mean to me, I take it particularly hard. For one, I think to myself, “Why would you have hard feelings (jealousy, anger, envy, etc.) toward someone who struggles with schizophrenia every day? Why wouldn’t you want to see that person, with so many odds against them, excel, succeed, and have good things happen to them?”

There are people (almost always women) who are mean to me, and some on a regular basis, and that “meanness” is confused and clouded by the “good” things they say and do. It is the type of meanness that if you were to point it out, they could claim, “Who, me? I didn’t know that! I didn’t intentionally do that,” or they might say, “How was I to know?” When you know full well, that they have known about the thing they said or did that has hurt you for years.

I have diverticulitis, and since my first episode with it, there are many foods, that I love, and that I would consider comfort foods that I can no longer eat.  I miss many of the foods that are off-limits tremendously, and occasionally I will say to my husband, “I just wish I could curl up and eat popcorn or nuts and watch television. It seems like a simple thing, but one I enjoy so much and I miss it.” The realm of food is an area where people can be mean to me – always making sure nuts and popcorn are around when I am there. Frequently, talking about eating nuts and popcorn, etc. I don’t even know what the person’s goal is other than to make me feel bad.

I have another person in my life that brings up a person who made my husband’s and my life miserable for many years. She does it in a way that she can claim ignorance but after twenty years? Ignorance?

All of my life I have heard people say to look for the “silver lining.” I guess the silver lining in this situation is that people don’t see me as someone they should feel sorry for, or be nice to because I have a tough time. Apparently, these people don’t see their actions as kicking someone while they are down. I am going to try to feel good about the fact that I must handle the “mean girl” mentality of other people just like anyone else would and feel happy that schizophrenia doesn’t seem to be a part of the picture.

The Complex Relationship Between Schizophrenia and Religion

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For the past few weeks on Facebook, I have seen dozens of posts trying to shame people into not saying that they are “sending thoughts and prayers,” after a disaster or shooting. I can understand people’s frustration with politicians who repeatedly send thoughts and prayers and then vote down gun control or funds for disaster relief. That makes sense to me, but to criticize everyone who says, “thoughts and prayers,” shows a lack of understanding of people who have faith. Not everyone can send money and people who truly do pray, believe their prayers are powerful and that they get heard. I can understand if someone else thinks that praying is useless, but it isn’t useless to others. Why can’t people just have that without it being another way to shame, insult, divide, criticize and act “smarter” than someone else?

When someone has schizophrenia, arguing or insulting them about religion or faith can be cruel or mean. Many of us who have been psychotic have a unique view of religion because many of us have spent time believing we were the Messiah, talking to God, talking to angels, talking to demons or had a unique perspective into the fate or creation or many other things about the world. After our psychosis is cleared up by medication, it can take awhile to “close” that open door in the mind. The past two times I was recovering from psychosis, I watched Christian television for sometimes 8-10 hours a day. The stronger my mind got, the more I saw it as Christian entertainment and less as “the truth.” For instance, I don’t believe people are “overcome” by the Holy Spirit and fall shaking on the ground at the “touch of a man.”  I don’t believe it, but when I am healing my mind, it is a good thing for me to watch, a safe thing for me to watch. If you do believe that please forgive my skepticism.

When an atheist argues with someone who has schizophrenia about religion they don’t know where that person is in their healing, or if they still hear angels, demons, God – medication doesn’t always clear up voices and delusions for everyone. To tell that person that God doesn’t exist and then try to argue with them about it and “prove” why is an exercise in arrogance (which I will say I see a lot of in atheists. The atheists I know think they are smarter than everyone else. Instead of respecting differences, they call religion, “believing in fairy tales” and other condescending things. I have never, not once, met an atheist that wasn’t condescending in their arguments with me. And each of them said they weren’t condescending even after telling me my beliefs were a “crutch” “magical thinking,” etc.).

No one but the person with schizophrenia knows what it is like to go for weeks, months or even years with religious hallucinations, delusions, and voices. It is possible when a person starts to heal; they will reject religion altogether, but with most people that isn’t my experience. Those of us who have had, in many cases, intense and profound religious experiences tend to remain religious even if we know that our former experiences were not part of a “healthy” mind.

I think if you want to argue or debate religion it is best to do it with people who haven’t experienced a psychotic break that involved religiosity. No one can say how we have been altered and changed by that experience and which parts of it were Biblically accurate or completely formed from the disease. It is best to allow people with schizophrenia to work out their complex feelings about religion with someone who is compassionate and extremely educated about theology, not someone looking to argue, debate and “prove” how intellectually superior they are.