Tag Archives: hope

Faith and a Late Night Prayer

31 Friday Aug 2018

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In the city, it is easy to think about man. In the desert, mountains and on a night at the beach, it is easy to think about God. Last night during my prayers, I wanted to search for God, so the image I brought forth in my mind was me, at seventeen, in Cyprus, walking the beach at night.

I can remember looking at the black sky filled with distant lights and thinking, “What did our ancestors think when they looked up from where they were sleeping and saw this vast and endless sky?” “Those lights hold the answers,” I told myself into my pillow. And that is why while I pray, I imagine that beach, that half moon, those stars that will always be countless.

“Some people think schizophrenia is the same as demon possession,” I say as I imagine my toes, bare, sinking into the wet sand. I know that can’t be true because if it were, it would mean doctors had learned how to silence demons.

I wonder as I imagine the light of the moon reflecting on the water, “Can you disregard the Ten Commandments, seemingly lining up to break every one, and still come back to the title of daughter or son?” The stars blink, winking at me from this Greek Island where I imagine myself walking while I lie in bed.

My cousin has cancer. Several of my friends have cancer. I have lost people to old age, tragedy, and hard living. “I’m not unique in my suffering; it is so important to remind myself,” I almost say out loud. If I die at fifty-three, I will have lived more years than many, and far less than others. It is not a curse I carry but the story of the reality of life.

A cloud covers the moon. The beach becomes darker than before. I say to myself, “So many people criticize Christianity, so many people say it is all fairy tales, and call those of us who believe ignorant, hypocrites, and fools,”  but I can’t go on each day without knowing I can call to you,  question you, run to you from the world that is harsh, violent and sometimes painfully beautiful.

The lights in the sky are shining, and I don’t hear you, but I see you all around. Each star, millions of them leading me to the answers I seek on a beach and ocean far away while the covers on my bed surround me and call me to sleep.

 

 

An Invitation to Normal

29 Wednesday Aug 2018

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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

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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.

The Art of Tricking My Brain

27 Wednesday Jun 2018

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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.

Bridging the Divide

14 Thursday Jun 2018

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The past two years have been surreal. I feel like reality is fluid. Reality used to be full of hard facts, things we could easily prove. Now, people we are supposed to trust throw conspiracy theories and “alternative facts” around regularly. Our country is changing at such a dizzying speed, and much of it is shocking, and some of it is alarming. One thing is for sure, as a group, as citizens, as a nation we are divided, and those divisions are causing people to feel hostile and angry. It is as though everyone is on the verge of snapping.
I discovered something, possibly one of the few things I can do to bring generosity, kindness, concern, love, goodness, friendliness, and all the positive things we can feel between two people back and that is to go small. I thought about it during breakfast this morning.
My husband and I had breakfast at a local hotel.  When we arrived, the whole room was loud, and every table was full. People were cutting in the buffet line, talking on video conferencing, having to raise their voices to hear their table mates. We learned from our server that ninety people eating in the restaurant were a part of a tour group. The people on tour were on a time limit, so it is easy to understand why they were in a hurry, not waiting in line, etc. but the impact this had on the servers as this person and that person asked for water, or coffee was noticeable.
Every time our server went by, we asked if she was okay. We told her it looked very stressful. We thanked her for everything she brought us and said we hoped her day started to look up. It was evident that our concern for her was going a long way because she made sure to come back to our table frequently to ask if we needed anything, or wanted anything.
My husband and I said working at a buffet when a large group comes in must be very hard. We didn’t see a single person tip their servers. We know from being on tours that the head of the tour should leave a big tip for all the servers to share, but there is no guarantee that that is the custom everywhere.
We decided to leave our server a larger than usual (about double) tip to make up for all the running around she had to do and for putting up with chaos with a smile on her face. When she received our tip, she was so grateful.
As we walked along the waterfront after our breakfast, I told my husband that the only thing I can think of to help out people right now is to go small – make every interaction, every conversation, every greeting, every time I talk or see another person an opportunity to show love and kindness. The only hope I see for rebuilding our relationships and communities and crossing this vast angry divide is to go small and take it one person at a time.

I know we can be the friendly and generous people we have a reputation of being if we heal each other one interaction at a time.
I’m going small, and hoping others will join me and that it can make all the difference.

It’s Not Personal and Lowering Expectations

24 Thursday May 2018

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I need to work on my expectations and taking things personally. I know from years of being on this planet, and hearing the words of some wise people, that making things personal is most often just punishment to yourself. Most things that happen are not personal.

I am in a writing class and on the first meeting when the teacher asked me a question, I told her I have schizophrenia. The whole class heard, and now every time someone doesn’t respond to my homework, or my comments, I think it is because they think I don’t matter because I am just the woman with schizophrenia. Thinking that people’s response, or lack of response, has anything to do with me is self-defeating and ridiculous.

People don’t respond to us because they are busy; they prefer texting, they are shy, don’t want to, don’t need to, are rude, are sick, etc. I could go on with that list for ten more pages, and every excuse for people not responding would be more likely the real reason than it having anything to do with me or my having schizophrenia.

I need to take the advice of some strong women and toughen up buttercup! It is hard to put yourself out there, though and not to receive positive feedback in return – no smiles, no kind words, no words of support – just silence, nothing, nada. It is particularly hard considering the stories/essays/pieces I wrote were deeply personal. I have to remember though, that it is my expectation that people will respond, it isn’t a requirement of them.  I need to keep my expectations in check.

I know for some people, especially those of us who have trouble with isolating socially, it would be easier not to take any risks (this is true of everyone not just people with a mental illness). Not taking risks, means you have nothing to lose. But that brings the flip side of that scenario into focus – if you have nothing to lose, you have nothing to gain.

I think it is so important for people (everyone) to push past their comfort zones at least a little bit on a daily or weekly basis. Those of us who are on the road to recovery need to try to push our boundaries, or our boundaries will keep getting smaller and smaller and threatening to choke the life out of us. Most of us need to grow a little more comfortable trying new things and the more things we get comfortable with, the bigger our world gets and that helps with healing.

I know I can’t completely regain all the functioning I had five years ago (an office job, lots of travel, very social, etc.). But I can work to regain some things and maybe even add some that I didn’t have before. To do that, though I will need to keep taking risks, lower my expectations and not take things personally! It can be done; I know it can. The only thing holding me back is fear and myself. Everyone with schizophrenia has dealt with fear; we are experts at it – this should be one we can easily conquer.

A Look Back Over Three Years

23 Wednesday May 2018

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In March, I celebrated this blog’s third anniversary. In the three years that I have been writing about life with schizophrenia, I think I have tried to keep one message in the forefront, and that is, people with schizophrenia can look, act, care about, and live a life similar to everyone else.

Of course, I have also made sure to point out that everyone with schizophrenia is different. Just like everyone without schizophrenia is unique, so are we, and so is the way the illness manifests in each of us. Those of us who have schizophrenia may share similar symptoms, but how we experience those symptoms and the level to which they impact us varies tremendously.

I hope from reading my blog that people have more of a sense of compassion and understanding for those of us living with this brain disease. The biggest issue in helping is first to be able to relate to us as human beings. We were all born the same way everyone else was born. We all have or had a mother and a father.

Many of us have people who love and care about us, and that would be true if we were in the hospital, in prison or living on the streets. Just because someone has lost touch with reality and appeared to be a loner, doesn’t mean they don’t have family or someone looking for them, or that cares about their well being.

Schizophrenia is not yet curable, but for many people, it doesn’t have to be a life sentence. It is a chronic illness like other chronic illnesses, and it is possible for some people to manage it as such. (There are, of course, people who are medication resistant, or who doctors haven’t found the best or workable combination of medications to help them reach their full potential). And there are others who manage without medication at all (an impossible scenario for someone like me).

In my three years blogging, I have tried to write against stigma. I have tried to write against stereotypes. I have tried to put the most human face on schizophrenia that I possibly can. I have shared some of my childhood here. I have shared some of my heartaches here. I have shared some of my joys, my strengths, and my weaknesses.

I have tried to make myself as three dimensional, and as like everyone else as possible, because I believe before there will be a better treatment environment for the mentally ill, everyone has to see something in those struggling that reminds them of themselves.

This blog is dedicated to those people who can’t show you what they love, what makes them happy, what they hope for and dream about, I can only hope I have been a voice for those people. I want all of our lives to be better, and I hope I have created a bit of that here.

 

 

 

 

The Long Road to Recovery

18 Friday May 2018

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I know I wrote about identity recently; introducing and thinking of myself first and foremost as someone who lives with schizophrenia. I’ve thought more about it, and I discovered that the more I concentrate on developing a routine that includes journaling, sketching, blog posts, mini-essays for social media, and a few projects I am working on with other writers, the less I identify as someone with schizophrenia.

I have to say that I honestly think giving people with a brain illness something meaningful to do is an important part of helping them to live a fulfilling life. The more things I add to my schedule (like writing a blog post, or writing a poem, or sketching a picture, or taking a walk) the happier I am. At night before bed, I fill out a journal called, “Every Day is Epic” and I have found that the more productive I was during the day the higher I score my overall day on the “Epic Meter.”

I know that I can’t go back to working a forty hour a week job, and I am not having any luck finding a part-time job that I think would be a good fit for me. So, I have come up with some book ideas (to co-author with other writers), and I think that the book ideas (projects) are a good way to use my time, talents, and produce some income. I haven’t been successful at working on the projects for a set amount of time every day, but I am trying to work up to that.

No one taught me how to live a fulfilling life while managing the symptoms of schizophrenia. I have had to forge a path of my own making, and I think I am getting increasingly better at it. I am sure that therapists and counselors, and psychiatrists know that it isn’t healthy to think of your illness as who or what you are.

I am sure professionals also know that having meaningful tasks to do make a person happier, but they don’t usually spend enough time with patients or clients to discover how to implement those things into real life. Also, they may not be aware that someone thinks of themselves first as someone with schizophrenia before they think of themselves as say, a writer, teacher, painter, baker, cook, artist, quilter, knitter, etc. Also, they may focus on if someone is hearing voices or not, and not how that person is spending their days (like are they sitting around in a room all day with no one to talk to and no meaningful tasks to accomplish).

My goals are to write for two to five hours a day. I don’t know if I can do that, but I feel like it is possible and I am going to shoot for it (maybe starting with a half hour, or an hour at a time). Spending five hours a day at something may not sound like a lot to many people. It would be a huge accomplishment for me, though, and every minute I am writing, I am identifying not as someone with schizophrenia, but as a writer, or an artist or a business partner (with the co-authors of the projects).

I am working my way toward recovery one day at a time, and I think I am discovering some life-changing treasures along the way. I hope we can share the riches together and all live more productive, fulfilling, and meaningful lives.

 

It is all About the Risk

12 Saturday May 2018

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People with schizophrenia (and those without) frequently have difficulty in social situations. I figured out what the big deal is behind some of the anxiety, discomfort, awkwardness of social situations for so many of us, and what I discovered was that it has to do with risk. We all have to risk something to be around other people and interact with them.

I am in a class right now, and I am required to critique other writer’s work. I critiqued one woman’s essay and completely misunderstood what she wrote. She may have thought that I am dense, or that I am a poor reader, others in the class may have thought that my schizophrenia impacts my cognitive abilities or many other things. The point is, to be in the class, I have to take risks. I have to risk looking stupid. I have to risk misunderstandings of all kinds. There is so much to risk just by taking a class.

Going to parties, or having a job, or going to coffee with a friend, all of these things require risks on different levels. Having a job involves a lot more risk than going to a party, and having coffee with a friend requires less risk than that of attending a party. But all social interactions require us to take risks. The better we are at taking risks, and recovering from flaws, mistakes, failures, etc. probably corresponds with our level of anxiety about being with people.

Before I was on medication, making a mistake or being embarrassed could cause me to spend the whole night awake thinking about what a fool or failure I was, and I would play the incident out in my head over and over again. I would torture myself. Now, that I am on medication, and my inner voice is very subdued, if not almost non-existent, I am not as hard on myself. I wonder if some of this has to do with age and the fact that I am more gentle with myself in general? I’m not sure, but for whatever reason, I recover much quicker from social “mistakes” than I used to.

I think this “recovery” from slip-ups, missteps, accidents, misunderstandings, etc. is what keeps me from slipping into complete social isolation. I am not “horrified” that I am an imperfect person and that those imperfections play out in the social arena every time I enter it. I also don’t consider myself a complete failure or idiot for making a mistake or looking foolish.

This discovery felt very relevant to me this morning after thinking about my class and my interactions with other people.

A Change of Identity

10 Thursday May 2018

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I applied for a blogging job (writing about schizophrenia), and the editor said I wasn’t a good fit. I waited months to hear from the company, and I held on to hope all of that time that I might finally have a part-time job. So, I cried when I received the e-mail rejecting me. I received a gift from my brother and his partner the same day in the mail that said, “We heart you” so, thankfully there was a band-aid for my wound.

Considering I wrote about happiness yesterday and trying to love the negative along with loving the positive, I tried to love the news about the blogging job (it took me a couple of days to get around to even considering loving this news).

For almost twenty years I hid the fact that I have a mental illness. I hid my diagnosis from family (my husband’s) as well as friends. I didn’t tell people about my illness because I was ashamed of it. Then, three years ago, I posted an essay on Facebook and opened up to the whole world. That opening up, revealing my diagnosis, has not been a bad experience. I have met wonderful people, and feel that I have grown into a role as an advocate/voice for people with schizophrenia and other brain illnesses.

Hiding an illness takes a lot of energy and the shame and embarrassment behind the decision to hide it wears on a person, too. Coming out in as bold a fashion as I did (starting a blog, writing dozens of articles and essay and publishing a book) puts the focus squarely on the identity of illness. I was saying loudly, clearly, and to everyone that would listen, that I have schizophrenia.

While I was shouting to the world that I have schizophrenia I was also trying to convince and tell people that I am a wife, sister, daughter, friend, aunt, writer, student, etc. but I don’t think that message was nearly as loud or nearly as obvious.

Well, not getting the job as a blogger who writes exclusively about schizophrenia pushed me a way I have not been pushed before. From now on, I am going to introduce myself to the world as a writer first and somewhere down the line as someone with schizophrenia (if that even comes up). I am no longer going to center my identity around someone who has schizophrenia.

If I had landed the job blogging twice a week about schizophrenia, I would have to be thinking about my illness all the time, researching, writing and constantly trying to find ideas to write about. I am currently taking a class for writing non-fiction (something I regularly do), and I am not writing about schizophrenia. I am writing about my life as a kid, growing up, my family, mistakes I made, etc. In fact, every assignment but one has been about my life before I even knew I had a mental illness.

So, am I happy now? Do I love the negative along with the positive? I don’t know if I love the negative, but if you read this blog, you can see I certainly have reason to be hopeful and even thankful I didn’t get the blogging job.

There might be something to this theory about happiness after all.