The title of this post is the title of my latest essay on Medium. Sorry about the swear word to those of you who don’t like that kind of language. I couldn’t think of a better way to describe my husband and his role in helping me manage schizophrenia and being open and honest about my diagnosis. I hope you will read the essay and clap for it if you like it. The link is here.
My husband and I have been home together for 110 days. I can count the number of times we have left our building the past three months on two hands. During this home time, this social distancing time, this “him and me” time, I have been working on myself far more than usual.
When we received the stimulus check, I signed up for virtual counseling with a counselor at BetterHelp. After two months, I decided that it was too expensive and signed up for counseling through my psychiatrist’s office. The counselor I have now works in conjunction with my primary care physician and my psychiatrist. I feel like I have a reliable treatment team in place. I feel like I made a move to do everything I can to reduce symptoms and live a life with as few difficulties as I can reasonably control.
My counselor and I have been working on techniques to lower my anxiety and ways to overcome some medical trauma I have, so I don’t panic every time I need to see a doctor. One of the techniques she is working with me on is to distance myself from my thoughts. What this is, is a way to have my thoughts have less power over my reactions and responses. So, for example, if I am anxious about going to the doctor, I say to myself, “I am having anxious thoughts about going to the doctor.” She said this technique works well for some people, but she asked me to also keep in mind that not everything works for everyone.
A few things that appear to be working well for me are deep breathing exercises ( I do these while doing my morning stretches), and I do them when I find myself tense, tight, and stressed during the day. When I am doing the deep breathing exercises during the day, I imagine tree roots growing from my body into the chair where I am sitting (a grounding exercise I learned in my mindfulness journal). If the tree roots exercise doesn’t start to relax me, I imagine I am wrapped tightly from head to foot in a blanket like we often swaddle babies. While visualizing these things, I focus on my breath and breathe as deeply as possible. Most of the time, I can slow my heart down, and feel the tension that gets all balled up in my shoulders and chest and upper arms start to fade away.
The other technique that is helping me is my writing practice. I used to write whenever I had an assignment for a magazine due, when I thought of an idea for a blog post, when I thought of a poem, or when I was working on an essay that I wanted to pitch to an editor. For the past 40 days, I have been practicing something called Wild Writing with Laurie Wagner. Every morning, I receive a video from her, and she reads a poem then gives a writing prompt. I set my timer and write for 15 minutes as fast as I can. Some days the writing is terrible (and that doesn’t matter), other days I write something I like and want to develop into a blog post, poem, or essay. My writing practice has tapped into many of my memories, and it is a safe place to write how I am feeling and thinking about current events.
We tried to open up our economy in California, but it looks like we will begin closing back down again today. The pandemic has been stressful, continually worrying about getting sick or loved ones getting sick. It has also been stressful to witness the massive division in our country over racism and even over wearing masks. Almost everything on the news is cause for intense worry and concern. These days are full of uncertainty and confusion, but I am working to make myself as strong and resilient as possible in a time when those two things seem necessary to daily survival.
Well, the title of this post is a little misleading, because one isn’t an essay, it is more like a list-prose-poem. I hope you will read both of them.
The first one is in Courier Newsroom and can be found at this link. I answered the question, “What Does Freedom Mean to You?”
The second one is a note from my writing practice that I posted on Medium. It is called “6 Surprising Things About the Long Days of COVID.” You can find the link here.
I’ll be posting more soon.
I will be a part of the Human Library this Sunday, June 28th. You can find the link to sign up here https://www.facebook.com/events/187531466027255/
The event is run like a library with librarians and books. I will be a book on schizophrenia that people can check out. I will talk for a half an hour about what life is like for me living with chronic paranoid schizophrenia.
I hope that you will come and support me. For those of you who don’t know much about my journey to diagnosis, my daily symptoms, and details about my first psychotic episode and hospitalization, it could be interesting for you.
Please sign up. It is on Zoom, and it is free.
Let me know if you can make it, and if you do, please be one of the people asking me questions. Questions help the presentation go so much smoother.
I will feel more confident with you there!
My life involves much silliness and playfulness, but I’m not the kind of person who eats ice cream for dinner or builds a blanket fort for self-care. I practice many rituals and routines for self-care, but they all fall under a pretty serious umbrella. For example, I floss my teeth each night, and I make my bed every morning. I take my medication twice a day, I eat five servings or more of fruit and vegetables every day, I stretch most mornings, and at least five to six days a week I carve out a half an hour to do some cardio exercise to strengthen my heart and burn extra calories.
My self-care routines are the fabric of my well-being and mental health. Still, no matter what I try, I can’t eliminate the symptoms of schizophrenia or an anxiety disorder. As a part of my routine, I write in several guided journals each day – a gratitude journal, a prayer journal, a mindfulness journal, and a few others. A couple of weeks ago, one of the exercises in my mindfulness journal was to touch something and concentrate on how that made the skin on my hand feel. I grabbed a piece of the shirt I was wearing and rubbed it between my index finger and my thumb. I concentrated on how the thick cotton felt on my hand. The motion of rubbing the cloth soothed me.
When I finished with the exercise, I decided to cut one of my favorite pieces of clothing, a t-shirt, or dress, or blouse and carry a patch of the material around with me. That way, I could use it to keep my fingers busy and, when necessary, concentrate on the feeling of the cloth to ground me in my body.
When I was searching through my drawers for the perfect fabric, I found a rose-colored scarf that is sheer material with crushed velvet flowers on it. I rubbed the scarf between my index finger and thumb and thought, “This is perfect. The sheer fabric feels light and a little rough, and the crushed velvet is soft and raised and creates little bumps that I can circle with my fingers.”
Since I found the scarf, I have been carrying it around the house with me. I keep it in my recliner when I am writing in my journals or playing on my phone. I take it into the bedroom to participate in Zoom meetings when my husband is on conference calls for work. I wrap the length of it around my left arm at night and hold the end of it in my hand so I can rub it while I am falling asleep. In the middle of the night, if I wake up (which I almost always do), I search for it with my hand because it has unwound itself from my arm. I feel for the flowers of raised material on the lace-like fabric.
I plan to take the scarf with me to my doctor’s appointments because I always have a high level of anxiety when visiting the doctor. Although I call the scarf my second blankie, the first one being the one I had as a baby and carried with me my first year in school and held it while I sucked my thumb. This new security blanket is the perfect camouflage because I can throw it around my neck, and no one suspects that it is a tool to combat anxiety and ground my thoughts in my body. The only sign something is amiss is that it is summer, and a scarf seems like an out of season fashion choice similar to the way this new self-care practice of “carrying a blankie” is out of character for me. I’ll go with it though, because it works but don’t expect to see me having chocolate cake or ice cream for dinner.
Even when having schizophrenia is the hardest on me, I try to present it to others as an illness that isn’t as difficult as it is. I don’t know why it is vital for me to show it in a more accessible and more positive light. I guess because I want people to treat me like they would anyone else. I want to belong. I want a community. I don’t always want to be an outsider.
The truth of schizophrenia can and is devastating. That doesn’t mean there is no hope or that some people don’t thrive despite the illness. A mother, whose son, Nick, has schizophrenia, sent me her memoir to read, and I found her story, her family’s story heartbreaking. Not only did schizophrenia threaten to tear all of their lives apart, Miriam, the author, exposes her feelings of guilt, of failing, or not making the right choices for her son.
At one point in the book, Miriam cries out to God to give her a map for handling the treatment and care of a child with a severe brain illness. At that time, she desperately wanted direction, guidance, knowledge and frequently found herself in a position to act alone.
I think, as a community, we need to embrace and accept every person’s experience with schizophrenia because no two stories are the same. I would like everyone with the illness to find meaning, hope, and some form of fulfillment in their life. I don’t get to choose how the disease impacts every life it touches, none of us do.
I hope you will read Miriam Feldman’s book He Came In With It: A Portrait of Motherhood and Madness. I know even if it doesn’t directly follow your or your family’s experience, your heart will go out to her family, you’ll identify with all of their humanity and will root for Nick to find some sense of normalcy.
The writing is superb. The sentences often sing.
Let’s support one of our own by buying and reading a book that shows a glimpse into the tragedy schizophrenia can be for many people and those they love.
* How can we help this writer? By preordering her book. Preorders mean almost everything in the publishing world. Here is the link on Amazon.
At eight o’clock in the evening, we can hear the distant roar of crowds, air horns, someone beating on a drum or a pan. We can see lights flashing on and off. I read in the Nextdoor Neighbor app that it is the nightly display to thank the essential workers. Three nights ago, I stood by my window, and I yelled, “Thank you! Thank you! Thank you!” I clapped as loud as I could. I was a single voice in my part of the city. At eight o’clock last night, my neighbors started flipping their lights on and off. Some of them yelled, and others cheered.
People made as much noise as possible. The nightly display has started to spread throughout the city. It has engulfed my neighborhood. When it gets close to the time to show my support, I open my window, and it never fails, I start to cry. The stress of the day and what we are living through hits me hard. People are dying. People are sick. We can’t go to the grocery store without fear. We can no longer shake hands, hug, or have coffee together. All the anxiety of the day washes over me, and there are tears.
It is my new ritual that brings the day to a close. It is my release, a cleansing, a sadness at the uncertainty, and all the fear. I’ll be at my window each night until the numbers go down instead of up, and the stay-at-home orders are unnecessary. I’ll be making noise for those on the front lines, and connecting with all of my heart.
I remember when typing two sevens, a three, and a four into a calculator and turning it upside down to reveal the word hell was a naughty thing to do. The innocence of that action is stunning to me. I think about people of all ages typing WTH (what the hell) or AF (as f***). Many of the “bad” things of my childhood don’t qualify as bad anymore.
My husband often says I have the sense of humor of a twelve-year-old boy because I make up songs, laugh at bodily functions, and move my body in ways that don’t qualify as dancing. Of course, my husband participates in these antics to get me giggling uncontrollably.
I don’t know about anyone else, but that is the kind of innocence and humor I need right now. Simple humor. Clean humor. Goofy humor. Humor that doesn’t make fun at someone else’s expense or make fun of a group of people.
Lately, when my husband and I are stressed, we watch reruns of America’s Funniest Videos. Neither one of us likes the clips where someone gets hurt, but we love the videos that have animals doing something silly or when something surprising or unexpected happens. The show makes us both laugh.
We are also watching one to three episodes of New Girl before we go to sleep. It isn’t as innocent as the video show, but we find it laugh-out-loud funny, and the main character, Jess, is wholesome and wacky. Each episode is only about twenty minutes, so they are short and can be squeezed in even if we are tired.
It may seem insensitive to seek out a good laugh during a pandemic when so many have lost their lives, and so many people are out of work. It won’t do any good though to risk our well being and then need to use the healthcare system when all of those resources are necessary for COVID-19 patients. Right now, we are living by the old cliché, laughter as medicine, and we take as large a dose of it as possible every day.
Since I started writing this blog, I have almost always wanted to show and tell about the similarities between me and everyone else. I have wanted to be the woman next door or the neighbor that always picks up the mail and waves hello. I have wanted to put a human face on schizophrenia and normalize the illness.
There are days like today, though, that there is no messing around, covering up, or putting a friendly face on my illness. It is severe, it can come from nowhere, and it can be a harsh, brutal, and rough adversary to try and wrestle. Today, it was so difficult with high anxiety, tight muscles that won’t relax no matter how many breathing exercises I do and just a general level of being uncomfortable in my surroundings, body, and mind.
There was even a five minute period when my husband was trying to help me today, where I cried and felt sorry for myself. It felt unfair to have to fight so hard to have an average or even okay day. I’m rarely someone who allows the indulgence of a pity party.
I had that pity party today, though, and there is something else I had. I talked with my husband, but mostly it was directed at me and my expectations. So many days, I tell my husband I am disappointed because of all the time I felt like I wasted. If I don’t have a productive day, I feel like the day is a waste and that I am failing.
Today, I tried to give myself a pep talk. It was a lecture about limitations and acceptance. I am rarely going to have highly productive days where I get three to four hours of writing completed, do some chores, take a shower, write in my journals, read some essays or part of a book, and many other things I wish I were working on or completing every single day.
I realized today that I am hard on myself. In my desire to come across as someone who is high functioning, I almost always feel bad about myself by the end of the day when I do not meet my expectations or ideas of what other people are producing, doing, checking off their to-do lists.
I described my day to my husband as one where I felt like I was barely hanging on by a fingernail. Oh my gosh, I have to remind myself, I have a brain illness. I have schizophrenia. Living with schizophrenia is a challenge. It is difficult. It is always present. It is like swimming in the ocean and getting caught up in the breaking of a wave. Pow, that sand can be hard when the powerful force of a wave slams you into it.
Stigma, jokes, misunderstandings, and stereotypes about schizophrenia are challenging to hear, deal with, and have to try to educate people or ignore. Still, I don’t think there is anything more damaging to me than the disappointment I feel toward myself when I don’t live up to my expectations.
I need to learn how to accept days where getting anything done is a success. I don’t want to lower the bar, but the sense of defeat I feel on bad days requires it. I need to learn to give myself a break. I have a difficult battle, and just staying alive and afloat is the best I can hope for on those rough water days.
I wrote an essay and published it over on Medium about my fear of mental illness before I was even diagnosed. It shows my ignorance, bias, misunderstandings, and fear of ever living with a severe mental illness. You can find it here.