A Look Back Over Three Years
Posted by A Journey With You in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized
brain disease, hope, mental health, mental illness, mentally ill, schizophrenia], social change, stereotypes, stigma, Treatment, Voice, writing
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.
Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized
brain illness, hope, mental health, mentally ill, metnal illness, recovery, schizophrenia], Treatment, wellness, work
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.
brain illness, mental health, mental illness, mentally ill, MIT, schizophrenia], science, technology, Treatment, voice hearers, voices
MIT created a device that gives voice to the voice inside your head. From my understanding, the device doesn’t read your mind, the user speaks silently to themselves, and the device recognizes the words.
I was thinking about the further development of this technology and how it might help doctors to better understand schizophrenia by allowing them to “hear” the voices that so many of us who have the illness either hear or have heard.
Imagine if a psychiatrist could “listen” in while a patient is having a conversation with God, Jesus, or any other number of deities, spirits, or hallucinations I have heard people with schizophrenia describe.
Would it be possible for the doctors to help us “control” the voices we hear? Would it be possible for them to begin to understand why we hear let’s say the voice of Jesus because that is a common experience among people who hear voices? What could they learn from the conversations we have with our voices?
I know the technology may never be used in this way because it doesn’t read the mind. I wish it could though because I would love to have other people hear what it is like to have conversations with God, Jesus, the Holy Spirit. Also, I would love to have documentation of some of the previous discussions I have had, because many of them seemed like there was no way I could make them up or even know some of the information the voices and I were discussing. A mind is a fascinating place, and schizophrenia is just one of its mysteries.
I hope they’ll make progress in this area, and that the progress benefits voice hearers. I for one, would find this exciting, fascinating, and potentially useful for treatment on many levels.
There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.
In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.
Luck can be the Difference Between Homelessness and Help
holidays, homeless, homelessness, Humanity, mental health, mental illness, mentally ill, schizophrenia], shelter, streets, Treatment
Yesterday, my husband and I went to Starbucks. A young woman was sitting at the corner table writing in a notebook. I recognized her from a few months ago when the two of us sat at the same table, and we both shared that we have schizophrenia. Next to her, was a woman who was talking to her loudly. The woman talking looked like she was probably homeless. Her hair was matted, and her skin was dirty. I assumed, although I can’t be positive, that the homeless woman also has a mental illness.
In that small Starbucks that seats about eight people, there were three women with a mental illness (possibly schizophrenia). It was surprising that we were all in the coffee shop at the same time, but what struck me was how sad, eye-opening and heartbreaking the situation was. Neither the young woman writing in her notebook or I wanted to talk to the other woman.
My symptoms weren’t showing yesterday. I looked like an average middle-aged woman having a coffee with her husband (spouse, friend, boss, or whoever people assumed my husband was). The young woman writing looked like someone who was working hard, and busy with her own life and in her world. She wasn’t showing symptoms either. The homeless woman, on the other hand, was showing symptoms of a brain in overdrive – she was talking loudly, she was laughing nervously, and she was trying to engage strangers in conversation. The young woman, politely told her that she was enjoying her music and didn’t feel like talking at the time (she said it a little kinder than I just wrote, but the message was clear).
When the young woman tuned out to the music piped into her ears through earbuds, the homeless woman turned in the direction of my husband and I. I looked away so our eyes wouldn’t meet.
Normally, I will talk to anyone who wants to talk to me, homeless, mentally ill, etc. but there are times when I can’t bear the enormous weight I feel about mentally ill people living on the street. I know the kindest thing I can do is look them in the eye, listen to their story and treat them like a significant and valuable human being. Yesterday, I couldn’t do it though.
After just getting through the holiday season, after just talking with my husband about our hopes and dreams for 2018, I couldn’t carry the burden of our cruel and inadequate mental health system that leaves thousands upon thousands of men and women without care or shelter.
My husband and I give our time and money to an organization that feeds, delivers medical and dental care, provides social and legal services, and assists in securing housing for the homeless. In other words, we are trying to do something to alleviate the suffering of some of the people without adequate care, shelter or services. Of course, we also write to our representatives and vote in every election. And yet, the problem is massive, and the human toll is high. Things don’t seem to be getting better.
And I couldn’t look a fellow human being in the eye yesterday. A human being, who I believe suffers from the same brain disease I do. A human being who isn’t as lucky as I am. She has no protection, no treatment team; she may not have access to medication, she has no shelter, no shower, she may not know where her next meal is coming from, she may not have a change of clothes. And all she was asking for was attention that no one wanted to give.
Next time, no matter how difficult, heavy, how much it weighs down my heart, I am going to look at that homeless woman, and offer to buy her a hot coffee. I know one step left or one step right and I could be in the same shoes she is wearing just looking for some validation that I am still human.
I’m sorry that I’m not always strong enough to hold the enormity of mental illness, but next time, I’m going to heave the baggage off my shoulders and pull up a seat and have a long conversation.
I want to treat everyone as significant. We all deserve that and so much more. Much much more.
I read an article two weeks or so ago about self-care and how it isn’t about a manicure or pedicure or a bubble bath. How real self-care is about getting yourself to the doctor, dentist, making a budget and sticking to it, and all manner of adult things that make our lives run smoothly.
I feel like much of my life is self-care (not overlooking my husband’s role in my care). I have to eat at a certain time for my medication to work. I have to watch my food intake, so I don’t gain too much more weight. I have to watch my sugar, so I don’t develop diabetes. I have to get my blood pressure checked regularly. I have to keep my weight down because of high cholesterol. All of these things are side effects of my medication, and there is more – checking my liver for damage, etc.
There are things about being an adult that brings me a sense of comfort, stability, and pleasure. The same type of feeling that is used most commonly when people talk about self-care, but with what I am referring to it fits more under the way the author of that article meant self-care. One of those things is grocery shopping. I love grocery shopping. My husband and I usually go to the store once per week, sometimes we make a list and sometimes we just wing it.
I love picking out my food for the week and stocking up on things we use regularly. I also like to buy myself treats. This time of year, tea is a big thing for me. During the spring and summer I don’t drink tea after dinner, but during the fall and winter, I drink it almost every night.
When we get home, and we have 24 rolls of toilet paper, twelve rolls of paper towels, a pound of coffee, a few boxes of my favorite cereal, and all the fruits and veggies and cheese we will eat for a week, I feel secure. I feel comfortable. I feel safe. Yes, I even feel happy. (We don’t use that much toilet paper or paper towels in a week, but when we buy them we get enough for a long time.)
Finding the little things in life that contribute to my well-being is important. Knowing that I feel the best with a full refrigerator, full pantry and full cupboards mean I will make an effort to go grocery shopping once a week. The same is true of my medications. When I have one to two weeks left of medication, I order it from the pharmacy. I never want to create a feeling of panic or an emergency over a lack of medication.
I know these things are simple, but not all of our treatment or those things that keep us well have to be super complicated.
I’m into the little things. I am. Those little things add up to mountains (and little things can be both positive or negative), and I for one want to be prepared for the terrain.
This blog post is a public service announcement (PSA).
I know that many of us with a mental illness or other disability don’t travel much because we can’t afford it, or because of all the details that go into it, or the fear of being far from our doctors, or a familiar pharmacy, etc. But we do travel, and this time of year more people are traveling than ever.
My husband’s father and his wife came to visit from overseas. They arrived on Friday night. So far we do not know where their luggage is. Thankfully, they put a week’s worth of medication in their carry-on, but they are staying for three months, and the remaining pills are in their checked bags. If you have an illness that requires you to take medications every day and you are traveling, never put your medication in your checked luggage. I always separate my medication into two groups. I put enough to get me through the vacation or trip in both places. I put one group in my purse and the other group in my carry-on. I always take twice as much medication as I need.
We took my in-laws to our pharmacy last night and asked what we needed to do to get them more medication if the airline is unable to locate their luggage. The pharmacist said that they couldn’t accept prescriptions from overseas so we will need to make an appointment and have my in-laws see a doctor here for new prescriptions. Obviously, this takes time, effort, and money. This is not what you want to be doing when you are far from home.
I know we will be able to take care of this situation for my in-laws (thank goodness), but not without stress, worries, etc. Also, it is possible we will need to go to a couple or a few doctors before one will prescribe medication to someone they don’t know. UGH.
Traveling can be a rewarding experience for anyone, but it can be particularly rewarding if you have a mental illness and you find your world is shrinking (my doctor has said this is what is happening to me – doing less, and less, taking fewer and fewer risks and trying fewer and fewer things). I need to take the opportunity to travel to open up my world, but there is a lot of planning that goes into taking a trip for me, and I can easily say that the handling of my medications is the top priority.
Having a chronic illness of any kind takes so much work and care. It isn’t enough to simply get a diagnosis, take your medications, and visit your doctor every six months. There is a lot of work that goes into managing an illness, and I hope we can all be successful at it because our health and possibly our life depends on it.
Posted by A Journey With You in mental illness, schizophrenia, Uncategorized
help, helpers, homeless, homelessness, medication, mental health, mental illness, paranoid schizophrenia, schizophrenia], Treatment, voices
Content Warning: Language
I walk downtown to a busy Starbucks to wait for my husband to finish his work day so we can walk home together. On my trip to the coffee shop and while I am sitting at a table, I see at least a dozen homeless people. Some of these people are talking to voices only they can hear, waving their arms and cursing at no one in particular. I want to look away but I can’t.
While I sip my coffee, I stare at one woman who appears to be in her sixties. She is wearing a wool coat and gloves on a warm Southern California day. She walks up one side of the sidewalk and then back again, repeating her steps over and over. She looks as if she is pacing. She begins to yell, “Fuck you!” as people pass her. “Fuck you!” She screams again and again.
I don’t know if she is directing her words at the people on the street passing her or if she is yelling at a voice in her mind. I am almost certain she and I share the same diagnosis. Schizophrenia is not hard to recognize when you have lived with it intimately for over two decades. I don’t approach her. I sit, watching, thinking to myself…no, knowing, that she could be me- a medication that didn’t work, a divorce, the death of a parent, so many things could have placed me in her shoes on this street, yelling.
In contrast, I have a nice condo, in a good neighborhood, and a husband with a job. I try to contribute when I can by writing essays, articles, blog posts. I wouldn’t say life is easy for me, but in comparison to this woman before me?
I work hard for the level of functioning I enjoy. I take my medications with three hundred calories of food twice daily. I try to keep my weight down to avoid severe side effects like diabetes and high cholesterol. I keep pills with me all the time for the break-through of unexpected symptoms. I battle alongside my husband to control paranoia, lack of motivation and anxiety.
I can’t help but think, with the right medication, the right support, and if the opportunities for treatment existed, a network of support was available, would this woman before me fight as hard as I do? I believe she would. I think most people with schizophrenia would. Voices can be terrifying and torturous. Stopping the assault of voices on the mind is like salvation of the religious kind. The silence seems so life altering, in fact, it is life altering.
I want to do something for my fellow-sufferer out in the street, but I know she needs more than a phone number, a five dollar bill, or anything else that I could offer, except understanding and compassion. I have those two things in abundance as I watch her continue to yell, “Fuck you!” and point her boney arms in random directions. She could be cursing me above all others because I’ve been so close to where she stands and still can’t figure out the right thing to do.
This latest tragedy is terrible on so many levels. Once the young man has proper medication, it is likely that his psychosis will clear up, and he will suffer from tremendous guilt and self-hatred for hurting someone. He will have to live with the actions he committed while psychotic. The other part of this tragedy is for all people with a mental illness; we all look dangerous which is rarely the case. Of course, someone was hurt, and that is always the worst part of any incident like this.
This story saddens me so deeply for everyone involved. We need better treatment and laws. I simply don’t have all the answers for what the best treatment and better laws would be.