Here is my latest essay on Psych Central. It has a content warning for death and dying.
I failed. I would like to say it is a small failure, but it is colossal. The worst part about it is I thought I could do it. I was excited to try. I had my hopes up that I would be successful. I was ready to put my illness on the back burner and rejoin the workforce.
I didn’t make it through orientation.
The first thing they made me do was to put my purse in a room because they didn’t want me to have it in the warehouse. I knew this was going to be a problem for me. My purse goes with me everywhere; I never lock it up, and I never let it out of my sight. I had two hundred dollars in my purse. I had my house keys and car keys. I had my medication. I had my social security number prominently displayed on my medical card. I had my driver’s license. And I had food; food, that they told me to bring for a snack. I can’t eat food that has been out of my possession because I am paranoid about contamination and poisoning. Food and food issues are one of my most frequent and persistent symptoms.
They took all of us new hires, about twenty of us, into a room. They gave us our identification cards and gave us a tour of the warehouse. While walking the warehouse I smelled all the laundry detergent soaps and other perfumed items. I am allergic to perfumed items, but that isn’t what hit me. I started getting paranoid and anxious about all those smells. Smell is a trigger for me regarding panic attacks and olfactory hallucinations. I was still worried about my snacks because I was starting to get hungry.
Back in the training room, we went over our login for work hours and a safety video. By this time my anxiety was so high and I was hungry, nervous, and paranoid. I told the man at the desk, “I’m sorry this isn’t the job for me.”
“Do you want me to walk you out?” He asked.
“Yes, please,” I said.
He walked me to the warehouse exit, and I asked about my purse. He apologized and led me to the room where I had left my belongings. I went to my car, drove home and had to take an extra dose of medication and have my husband come home to try and get me back to a stable place.
I learned a few things today. The first is I am no longer young. Also, I don’t have the courage and energy and resiliency I had in my youth. My symptoms have gotten worse over the years (I may not be actively psychotic but what I can handle, accomplish and push myself to do is greatly reduced from ten years ago). I will try to make working at home a priority again because I believe it is all I can reasonably handle. Although I believe people with schizophrenia can do anything, I cannot do everything. I have more limits than I imagined. I am not giving up (I will try to find some form of work that I am well suited for that doesn’t require me to have an episode just by going to orientation). People will still hire me, and I may give in sometimes, but I am not a quitter.
Today was a setback, a failure of sorts, for all of us with schizophrenia trying to lead a normal life, but I still plan to find a way to be a good example of successful living while dealing with active symptoms. I know it can be done, and I believe I can do it. I may not be able to do traditional jobs, but I will find some meaningful way to use my time and talents.
I hope you had a more successful day and a better experience than I did, but if you didn’t, let’s agree together not to give up. Let’s keep trying. Failure is nothing to be afraid of, it is not trying that dries us up and kills our spirit. Our spirit is our life force, let’s keep fighting to keep it vital, active and alive.
A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.
After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.
I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.
I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.
As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.
I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.
Happiness is not rare, but it isn’t always easy.
(If you have been reading my blog for a while, you know that I don’t feel sorry for myself. I frequently write about the beauty I find and see in life even though I battle with a severe mental illness. I don’t want people to think that my illness does not impact my life, though. It would not be accurate or truthful to say that living with schizophrenia is easy. For me, and many others, it is not. Yesterday I posted something that was 100% positive so I thought I would give a little glimpse into the struggles that some of us with schizophrenia go through as well. I am not complaining. This essay reveals another side to living with mental illness).
I’m not always sick or experiencing symptoms of my illness. There are hours, and when I am lucky, whole days, where my symptoms are not present and I am just an average woman going about my life. During these asymptomatic times, I simply don’t stand out.
Forty-one days ago my husband’s aunt was moved into hospice. We immediately drove to Los Angeles hoping to beat the march of death and tell her good-bye. We were able to be with her, and her immediate family for eleven hours in the hospital. I was able to share memories, comfort her daughters and enjoy the company of extended family during a difficult, sad, stressful and solemn time. I managed the whole day with calm, serenity, strength and grace. I was able to say good-bye to someone I cared about without worrying at all about schizophrenia.
A few days later, we went back to Los Angeles for my husband’s aunt’s funeral. When we walked into the chapel, anxiety overwhelmed me. I couldn’t sit still. I went downstairs to the bathroom. I walked back up and sat in a pew. I walked outside. I could not get comfortable. I told my husband I was struggling. After a half hour of him trying to help me overcome my symptoms, my husband said, “You need to take some more medication today.” I did so willingly because I knew that he was right.
My husband and I spent the ceremony in the car trying to relieve my symptoms. When it came time to move to the graveside for the burial, I tried to join the other people mourning. I walked downhill and stood near the casket. I couldn’t stay, though. After a few minutes, I made my way back to the car. I climbed into the back seat and tried to nap (usually a higher dose of my medication will put me to sleep for a while). Before I knew it, my husband was in the car, and we were on our way to having dinner with a large group of family and friends.
I thought sleeping would help and that my symptoms would be gone but they weren’t. I was hoping that some food would calm me down. At the restaurant, I ate as much as I could. I still felt shaky and anxious. My niece asked me to go shopping with her. We went shopping and stopped by Starbucks. By the time we returned, most people were saying their good-byes.
It wasn’t until we got in the car and started to drive home that my symptoms finally subsided. I said to my husband, who had been so helpful to me all day, “I am fine now.”
There are times when I can be the support that my loved ones need and there are times when I need their support to enable me to get through a day with schizophrenia. For me, the illness is unpredictable, and that means I have to accept my weaknesses when they are present and stand firm in my strength when I have a full supply.
How do you identify?
When I was in my early twenties, before my diagnosis, I identified as a woman, as a social worker, as an aunt, sister, daughter, wife, liberal, etc.
I would say the three main groups that made up my identity were as a woman, wife, and social worker. My original diagnosis as someone with bipolar disorder, made my whole view of myself change. There was a shift inside of me. I had to make mental illness a part of who I was because I now had that label.
Was it the biggest part of who I was? Did it influence or outweigh the rest of my identity? I didn’t know the answers to these questions. I think the way the medical establishment gives out a diagnosis and then expects you to come up with a way of reorganizing your identity to include the new label is often cruel.
I guess that is where psychotherapy comes in. I adjusted without therapy, though. I had a unethical experience with a therapist that led to my first episode of psychosis, and I certainly wasn’t going to go back and try that again. In fact, I haven’t been in psychotherapy since before my diagnosis (with the exception of a few sessions with a therapist while I was psychotic eight years ago).
If I had worked with a good and ethical therapist at the time of my diagnosis, I might not have lived for twenty years in silence ashamed of revealing my illness. I might have been able to see my diagnosis as it is, a disease like any other, and I may have developed the confidence and self-esteem necessary to live openly as someone with a mental illness.
Instead, I hobbled along with my husband in the dark for nearly twenty years, keeping my illness a secret from the majority of people in our lives. It is possible that I over-identified with being mentally ill and was ashamed of so much of myself.
I worry about people over-identifying with their illness – having their illness be the biggest part of how they define themselves – seeing their lives through a lens of a diagnosis instead of thousands of other wonderful things.
I try not to identify too much with my illness now. I try to identify with things like being a woman, being a partner, being a writer, being a student. I put all of these things before having schizophrenia.
I read blogs and articles written by people with a mental illness every day, and I see it all the time, the primary way that some people define themselves is as a mentally ill person. There is nothing wrong with living without shame, but to tie yourself up in your struggles first instead of your strengths can hinder your happiness. I am an old timer where mental illness is concerned, and I have learned a thing or two, and if I could give people a bit of advice to have the chance at the best life, I would say search and find those things that make you happy and identify with them first. Be a painter. Be a writer. Be a poet. Be a musician. Be an accountant. Be a mother. Be a father. Be a mechanic. Be a teacher. Be a friend. Be a partner.
Make a list of all the things you are and at the very end tack on the label, schizophrenia or bipolar, or anxiety disorder, or depressed. Make your mental illness the very least of the ways you identify. You are so much more than a diagnosis, and you have to prove it to yourself before anyone else will believe you.
When I have a panic attack, I am terrified of dying. When I am having a good day and think about having a terminal illness, it doesn’t scare me. I like the good days. I don’t like to be fearful of the end of my life. If I have to be aware that my life is going to end one day, I don’t want to be terrified of how that is going to happen.
For the past twenty years, I have watched people from Mexico celebrate the Day of the Dead, and every time I see an altar, or a painted skull (I have one on my desk), I wish that we treated death more like our neighbors in Mexico. I want to be more like Mexicans and have a day to celebrate the dead, and keep them as a part of my life. A celebration of those who have gone before isn’t something I want to do alone I want to do it with others, as a part of a family or community.
I grow weary of living in a culture that worships youth, and where many elderly people are placed in homes away from their families. I know from personal experience that it isn’t easy or even safe, to always care for the elderly in your home, but many people are alone at the end of their lives, and that is tragic.
The first time someone I knew died, I was twelve or thirteen. Two boys, twins, from my hometown, (I had a crush on one of them) drowned underneath a waterfall near a lake outside of the town where I grew up.
Since that time, I have lost friends, a step brother, aunts, uncles, cousins, and my grandparents. Occasionally, I will write a story about one of them, and the process of putting a memory into words brings more memories of them back to me.
I love the young people in my life, and I know they have things to teach me, but so do the older people in my life. When I see older people, I know that someday, if I am fortunate enough to live a long life, I will be in their place. I may lose bits or pieces of my memory. I may completely lose my memory. I will be frail in comparison to my youth. I will have more doctor appointments and more medication. Of course, there are more and more stories of people living past one hundred who are still participating in a passion of some sort like music, or architecture, or other arts. Many people are living longer and healthier.
These are the thoughts I have on a Sunday morning in January. I am thinking of how I would like to celebrate those people who have died but are still a part of my life. I am also thinking about how we treat youth and age, and my mortality and the mortality of those I love.
It may seem like a weighty or depressing topic for the early morning, but it shouldn’t, and that’s the point – it happens to all of us and so many of the messages we receive from advertising is that it doesn’t have to. It does have to. It is a certainty; a certainty that we often hide.
I’m not hiding this morning, although I may be next week, and if I have a panic attack, I’ll be terrified of this very thing. I don’t want to be terrified. I want to celebrate and accept. Of course, I also hope to be writing my best stories at the age of one hundred.
My post on Psych Central today is about people marrying those of us with a mental illness and how those people are not automatically saints. You can read it here.
I had a new article posted on The Mighty. Some of you may have seen it before. It is an open letter to a hiring manager from someone with a mental illness looking for a job.
I am a day late, but I would like to wish all of you a Happy New Year! I hope 2016 is our best year ever!
I went to bed last night and a controversy was just starting to brew on one of my favorite sites to write for, The Mighty. One of the articles I wrote for them was shared over 1,000 times on Facebook. The message of that article was about stereotyping people with schizophrenia, and it reached a very large audience. Bravo! Good for me, good for them, good for breaking myths, stereotypes and helping people understand that schizophrenia isn’t a one-size-fits-all disease.
When I woke up this morning the controversy raged on, and if fact, it had grown while I was sleeping. Now there is a petition against The Mighty asking them to apologize to the disabled community for the harm they do. (The post/article that started the controversy was about autism. A parent wrote an article and created the game BINGO with her/his child’s symptoms. Some Mighty readers were outraged by the article because they thought it made light of, or made fun of some of the hardest and most difficult aspects of autism).
Okay, then. I’m not going to disagree. Last week The Mighty posted a cartoon by a woman with schizophrenia that said she wanted to be called, “schizophrenic” and she said she had every right to request that. You can find the cartoon here. The editors at The Mighty contacted me before running the cartoon and asked me what I thought about it. I thought it was taking us back to the early days of my diagnosis (twenty years ago). I thought it was harmful. I thought it was against most of what I work toward (considering schizophrenia as an illness and not who or what I am). Okay, so I was able to say what I thought. Other people with schizophrenia thought the cartoon was funny and right on.
I think that young people today don’t know how difficult it was twenty or even ten years ago to talk about a mental illness (exactly what I said in my post yesterday), and it is sites like The Mighty that have made mental illness and other disabilities mainstream conversations. Do they always get it right? Not for me they don’t, and they never will for everyone, because they are telling the stories of individual people with disabilities and individual families caring for people with disabilities.
Talking about disabilities like talking about race, or gender, or LGBT issues will never be perfect for everyone, but there are people/agencies/organizations/media outlets that are very successful at getting the conversations going. Those conversations are critical to acceptance by the larger community, and they are critical for change.
Of course I am not going to agree with every single person who has schizophrenia, and I don’t even think that should be the goal. The goal should be to end stereotypes, discrimination and stigma, and having a massive platform like The Mighty to tell our personal stories helps to do just that.
I am standing behind the work of The Mighty. Nothing manmade is ever perfect, but it can be useful, empowering, beneficial, and life changing. #IAMTHEMIGHTY #GOMIGHTYGO
anxiety, bipolar, Blogging, blogs, companions, crisis, depression, dogs, mental health, mental illness, mentally ill, posts, Psych Central, recovery, schizophrenia, self esteem, service animals, writing
Here is a blog post I wrote for Psych Central this morning. It is about the issue of companion dogs – how they aren’t for everyone. If you are considering a dog, or even if you have one, pop over and see what you think. It is here.
Here is an article I wrote last week about 5 ways to recover your self esteem after a mental health crisis. I think it is helpful. What do you think? You can find it here.
It’s beginning to look a lot like Christmas…