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
I don’t know ninety percent of my friends on social media in real life. I can tell you that I have watched some of their children grow from birth to toddler. I have seen them adopt puppies and cats, and I have frequently read about the loss of a loved one. I don’t know most of the people on my “friend’s list,” but I would recognize them at a writer’s conference (which frequently happens) or in a workshop.
All that is to say, I read what people are posting, and I have been for years, and the level of comfort that most people toss out about anxiety and depression is amazing. It seems like the majority of people I connect with on social media have a diagnosed anxiety disorder or depressive disorder, or they have diagnosed themselves.
In the circles I am a part of it is perfectly natural and well accepted to discuss social anxiety and panic attacks, it is a little less prevalent to discuss depression, but I still see a post about it almost every day. The way people toss out these two disorders has always left me wondering if people are “claiming” them or if they are taking medication for them? If everyone who is posting about social anxiety and panic attacks or depression is being treated for those disorders then the statistics on mental illness are far from accurate – it is a crisis.
I suspect that not everyone who uses the phrase “panic attack” actually means that their heart was racing, they thought they were going to die and thought about going to the emergency room. I also suspect that not everyone who uses the word depression to describe their mood has trouble with daily activities like showering and brushing their teeth. Please, don’t get me wrong, I know that many people suffer and suffer quite silently or we wouldn’t lose famous people to suicide and drug overdoses as often as we do. I simply think that phrases and words like panic attack, depression, social anxiety are incorrectly and way overused.
The point, I want to make though, is can you ever imagine a time when people (lots of them) would casually throw out that they have schizophrenia? No, you can’t. Schizophrenia is like crossing a line. Depression is acceptable, anxiety is acceptable and isn’t that bipolar disorder the one that makes you so creative? I am so tired of reading people’s essays, and books where they say, “At least I don’t have schizophrenia.” Well, an article came out today (link here) that claims that research shows that ADHD, bipolar, schizophrenia, major depressive disorder and anxiety disorders share a lot of similarities genetically.
I’ll be waiting for the day when people are also self-diagnosing themselves with schizophrenia the way I suspect some of them do with anxiety and depression, and that schizophrenia is openly talked about, acceptable, and almost the cool thing to be. If current attitudes are any indication, I will probably be waiting a long time, but still, I will be waiting.
Over the past two weeks, the public learned of three celebrities who are, or were, living with bipolar disorder, and rather than the media using this as the perfect time to educate people about mental illness, the cause of it, the symptoms of it, the available treatment options, many people fell back on stigma.
Many people questioned how Kate Spade could be so selfish as to take her life when she would be leaving behind a daughter, and I read a lot of misunderstanding about her “having everything.” These statements assume that Kate Spade was in her “right mind.”
Depression is not only the thief of joy it is a liar. Depression tells many people that their loved ones would be better off without them. Depression is more than just a feeling that a jog, trip to the spa, or a lunch with friends, can help someone overcome. It is a chemical imbalance in the brain. It is not weakness, just like schizophrenia, it is a brain disease.
I heard a report that Kate had been self-medicating with alcohol for some years and that she didn’t feel like she could get help because of the impact that attention would have on her brand. That is the stigma, and it costs us the lives of people. The tragedy that ended Kate’s life might have been different if we were more educated, accepting, and open about the realities of mental illness.
On the other end of this, is Kayne West admitting that at 39 he received the diagnosis of bipolar disorder and that bipolar disorder is his superpower. I don’t know the details of Kayne’s illness, but I do know what romanticizing mental illness is and what it sounds like and that is what Kayne is doing. Having received a diagnosis of bipolar disorder in my twenties, the first thing I did was to read about all the “creative geniuses” who have and had it.
I thought that my creativity was a symptom of bipolar disorder. All these years later, and with a diagnosis of schizophrenia now, I don’t believe my creativity comes from my illness. I think I would have been far more successful in this life if I didn’t have to manage and deal with a brain disease – it impacts me every day, and it is disruptive and hinders me from my full potential.
Then there was Rosanne Barr and her racist tweet. I am sorry that Roseanne Barr has bipolar disorder, I am sorry for every single person, famous, or homeless (it doesn’t matter) who has to deal with the consequences of a brain disease, but Rosanne made mental illness look like a character flaw. Being bipolar doesn’t excuse racism, and it doesn’t create it either. Bipolar disorder can hinder impulse control, cause disordered thinking, cause delusions or strange beliefs, but a diagnosis doesn’t automatically mean you will be a racist – that has to do with character and personality and isn’t a symptom I have heard of regarding any mental illness.
I don’t know everything about mental illness, statistics and my experience are all I have to form conclusions. I do know that when mental illness is in the news this much that the media rarely helps us out with educational and stigma-busting information.
In the city where I live in California, we voted to ban plastic bags. The plastic bags were ending up in the Pacific Ocean, in storm drains, and on the beach, threatening wildlife and causing damage to the environment. I have been concerned about the environment and lessening my footprint on it for over thirty years (my first husband was an environmental scientist) so, I was 100% behind banning the bags.
It turns out that banning plastic bags increased the cases of Hepatitis A in our city. How are the two related? People who live on the streets and in encampments were using the plastic bags as toilets and then disposing of them. When plastic bags were no longer readily available people started eliminating on the street and in places where people walk, sit, sleep and walk their dogs.
Fecal contamination spreads hepatitis, and the best way to prevent it is to wash your hands frequently. People on the streets don’t have access to hand washing stations (they do now). So, the lack of a proper way to dispose of waste combined with no accessible hand washing stations created an epidemic in our city. It wasn’t just the lack of plastic bags that created the health risk, but it contributed to it.
The plastic bag example is a case of unintended consequences and most of our actions, words, etc. even if well-intentioned have unintended consequences. I once warned someone about the lies and manipulation of another person, and the person I warned turned around and told the other person causing me continued problems for over three years. My desire to protect the person I gave the information to turned into an opportunity for her and her husband to hurt me and my relationship with several people. This example might sound like a small example but the stress the situation caused contributed to me being psychotic for over six months.
They happen in our lives every day, all around us. There is no way to foresee them or to avoid them without living a completely sheltered life. As long as you are talking to people, going out in public, etc. there will always be unintended consequences.
This reality, these possibilities, this path that we can go down without ever intending to, these ripples we can cause that can go on for miles, over mountains and for years, can create anxiety in people. I know they can create anxiety in me. Even though I have had bad results with unintended consequences, I choose to keep moving forward, but if I am more cautious, slower to make a move, more guarded don’t be surprised.
Unintended consequences can occasionally make you sick and can cause you hesitate before moving forward in case the landscape in front of you is about to burn.
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.
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.
When I went to bed last night, I had no intention of waking up at 4 AM to watch the Royal Wedding. It just so happened, though, that I woke up at 4:30 this morning, so after I made coffee, and poured a glass of water, I sat on the couch and turned on the television. When I turned on the tv, Meghan and Harry were preparing to exchange vows. I spent the next forty to sixty minutes weeping. The tears were flowing so steadily out of my eyes that my hair and face were all wet. I can’t believe that this modern day fairy tale impacted me in such an emotional way.
When I was a little girl, I can’t remember ever wanting to be something when I grew up. In fact, I can’t remember ever answering that question that so many adults ask little kids as they grow. There were very few Disney Princesses in the early 70’s (Cinderella and Sleeping Beauty are the only two I can think of), and my first trip to Disneyland as a twelve-year-old was a disaster (for the record, I hated it). Because of these things, I don’t think I wished I was a princess growing up. So, that isn’t why the Royal Wedding made me so emotional.
Late this afternoon, I told my husband how I had wept through the ceremony, and I asked him why he thought I had that response. My husband thought it was because the news has been so bad, for so long, and there is so much negativity that the wedding was a chance to experience a love story, something beautiful, and all the hatred and racism we have been experiencing didn’t exist, at least for a moment.
I think my husband is right. The nightly news and bombardment of news on social media are impacting my mental health. Rarely do I see a story that is hopeful, uplifting, a connection between people and our shared humanity. I know that I can’t turn my back on current events entirely, because to do so is to be part of the problem. I am going to commit some of my days to reading stories or essays written by writers that deal with something besides Russia, war, guns, lies, investigations, impeachment, corruption, racism, bigotry, misogyny, etc. I can’t keep up this soul-crushing pace of bad news and negativity and keep a firm grasp on good mental health.
I hope that if you spend a good chunk of time on social media or watching the news that you will join me in adding some soul-enriching writing or entertainment to your day or week. I know taking a walk to the park helps clear my head a lot, but there is no substitute for reading an uplifting story of human compassion, love, selflessness, or heroism. I am going to be returning to my bookshelves with a renewed interest, and after that, I might take a trip to our city’s beautiful library. Hey, that’s a good idea for an outing. I’ll meet you in the biography aisle.
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.