I loved May Day as a little girl. In grade school, we usually made small paper baskets to hang on doorknobs, and on May 1st, when I got home from school, I would fill the basket with bright purple and fragrant blooms from my mother’s lilac bushes. Then I would go to a neighbor’s house, hang it on the door, ring the doorbell and run. I am sure the neighbors always knew who had left the bouquet, but at the time I thought it was a secret and one that made me feel good.
Speaking about secrets, it is no secret that May is Mental Health Month. I am in the process of sending pitches to editors about different issues involving mental health to raise awareness in any way I can. But just because I am an advocate for mental health, I am not always speaking from everyone else’s experience. Unless I am doing research, every idea I present is my own.
I write, speak, and participate in panels about mental illness. I also follow many other advocates. One thing that is consistent across the board is that I don’t agree with every article, every opinion or every experience I read about schizophrenia. I don’t even agree with the use of language that some advocates choose to use.
Not agreeing with everything is okay, though. There is no way that thousands of people can all be in agreement about everything. I just wanted to throw this out there, so that you know, you don’t have to agree with every post I make to support me, follow me, or think that I am making a difference, and I don’t have to agree with you 100% to think you are marvelous and changing the world.
With those concerns out of the way, I hope you get an anonymous bouquet on your door today, and I hope we can work together to change the dialogue about mental illness.
Happy May Day, and let’s work to raise awareness this month! Ready? Go!
I assume that most people who make it to fifty, can look back over their years and feel as if they have lived more than one life. I am no longer the teenager who skipped school frequently and had low self-esteem. I no longer get into cars with other teens who have problems like mine and drive to Denny’s and drink coffee for hours never tipping the poor server who had to refill our cups and clean all the sugar packets off of the table.
I am no longer the young woman who is married but feels like she is playing house. Making meatloaf and garlic mashed potatoes, and trying to find ways to cook venison that will get rid of the gamey flavor. Letting the laundry stack up to a huge pile so that it takes a whole day to do it, but I did it, along with scrubbing the small gray and pink bathroom and the pink and blue tiled kitchen.
I no longer make reservations to fly to Europe or Africa, or South America and then make the trip without cell phones or laptops and somehow miraculously make it to all these countries with layovers and plane changes and cancelations and somehow make it to my parents waiting to pick me up in a place I’ve never been. And I wasn’t scared. And it all seemed normal. And I never knew that I had skills and was resourceful in ways that many people are not.
I still talk to most people I encounter in public at coffee shops, grocery stores, casinos, hotels, conferences, but I no longer invite them home with me to drink coffee or talk over a glass of wine or six-pack of beer. Where once I was fearless, I have become cautious, frightened, suspicious.
Where and what is the divide that separates one me from the other? It started with a hospital stay, but it didn’t happen clearly on discharge. The changes took years, many episodes of psychosis, hundreds of panic attacks. The changes were a slow erosion of independence, fearlessness, confidence and a carefree sense of adventure.
My mom who now has chronic pain in her back, says that a level of discomfort is her new normal. My new normal is something I am trying hard to get used to. I wave good-bye to a young woman that I never fully realized was talented, capable, and remarkable in so many ways. Before I ever got to appreciate her, she was gone, but not without leaving a memory that calls to me in a thousand ways every single day.
Lately, I have been participating in a lot of public events. For me, my social calendar is busy. I did a book signing at Barnes and Noble a few weeks ago. Not that many people showed up, but my friends, who are mostly social workers, said I did a great job with my topic of toxic positivity and how that related to the mental health guided journal I wrote (available on Amazon).
Two weeks ago, I was on a mental health panel for a large writing festival in my community. Next weekend I am on another mental health panel, and in June I will be making a presentation about my guided journal at the local women’s museum.
If you read all of this and attended the events, you would think that I am on the verge of possibly creating a role for myself (hopefully a job) in the community. What you don’t see is the effort that my husband makes to make all of these things possible for me.
My husband sorts and packs my medication. He brings extra anxiety medication in case of a panic attack. He packs snacks and water for me and carries them in a backpack. He attends every event with me to make sure that I am okay. He listens to my presentations several times so that I will be comfortable and familiar with the material that I present. He helps me get the necessary sleep, meals, etc. that I need the day before and day of an event. He cooks, cleans, drives, and takes care of all the details of everyday life.
What I am trying to point out, is my success (that I feel wildly grateful for) is the work of two people and the backbone of that work, the foundation of it, is the stuff my husband does behind the scenes.
I can’t even begin to tell you all that my husband has to do so that I can attend the occasional writer’s conference. Traveling anywhere away from home is a huge ordeal for us. It didn’t use to be this way, but we have had to adjust to new symptoms over time.
This post is simply a reality check for people who talk about people who are high functioning. My husband is what I would call super high functioning. But me? I have schizophrenia, and we deal with it as a team, a lopsided one, but a working one nonetheless.
I was interviewed in this article for Drive Magazine about humanizing schizophrenia. My part is about halfway through. If you scroll to the bottom, you can see they printed the cover of my book.
(My contribution to poetry month)
OUTSIDER AS ADULT
Like in junior high
Pick my classmates
One by one
With each name called
My name will be next
It is painful
Two or three
I am the final
On the second captain’s team
Before the game
Our dining room window is floor to ceiling (a slider) and has a view of the bay if you are seated at the table, sitting in the recliner or standing near the window. It is a beautiful view. We often see the water dotted with sailboats, and the sunsets are spectacular when they are pink, or orange.
We have lived here since 2009, and the only window in our home with a good view has a treatment on it that is getting old and makes the glass foggy. It has been foggy since we moved in. So, our amazing view is hazy and unclear unless the window is open.
Today, a window company is replacing the glass in that window. Right now, I have a clear view of the bay. The fog or haze is gone, and I can see the deep blue of the water and the boats that are out sailing in the bay.
It took us over ten years to take the necessary steps to enjoy our water view completely, and it seems like a perfect metaphor for what we so often do in life. We allow the negative (fog, haze) to obstruct our view of the positive. If only we would replace the tapes in our heads that play the scenarios that tell us things are bad, are always going to be bad, or that the next shoe is going to drop, etc.
I am an expert at playing disaster tapes in my mind. I run every bad scenario through my head when I am waiting to hear the news about something, when someone doesn’t call, or when I try something new, or I am waiting for results, etc.
Today, we added value to our property and increased our enjoyment of our condo. The increased value can be something we enjoy several times every day. Today, I am also committing to adding the same value to my life by trying to get rid of the haze and fog of negative thoughts and see clearly to the good, the positive, the healing, the miraculous that happen all around me every day.
I am not going to spend another ten years with a cloudy view of my world. There is so much more positive than negative each day. The windows now reveal a million dollar view; one my mind can achieve too if I replace the negative talk.
I’m going to sit in my recliner and enjoy an unobstructed clear view of the waterfront, and while I’m there, I am going to run a list through my mind of every wonderful thing that I have in my life right now. The view of a happier future without the haze of negative thoughts is already starting to reveal itself.
I sit and look out over the San Diego Bay. What led me to this Southern tip of the United States involves a road trip to thirty-four states, selling all of my possessions, buying a seventeen –foot van, a decision to move to Abu Dhabi and a family drama that was so vicious and hateful I still have nightmares about it all these years later. Those details are just the small stuff, though. There is a before San Diego. There is a before my husband.
There is a bridge, three bottles of pills and two strangers. I didn’t do it for attention. I wasn’t saying, “Help me, look at me, notice me,” or anything like that. I wasn’t reaching out or thinking about a rescue. I was thinking about putting an end to a fractured mind.
On the bridge, a man gave me his hand and pulled me over the ledge to safety. On the interstate between Tacoma and Seattle, a man stopped after I passed out behind the wheel of my car. The details are blurry because by then the medication was pumping through my body with every heartbeat. The man waited for an ambulance. His last words before they closed the door, were, “Is she going to make it?”
I don’t know the exact day they rushed me to the hospital and spent all night monitoring my heart. I wish I did know the day so I could celebrate my anniversary, my second chance, the beginning of the new. I do know it it has been somewhere close to twenty years ago.
Twenty birthdays I came within minutes of not having. Twenty Christmas stockings that I would never have opened. A marriage to the love of my life where I would have never said, “I do.” There are approximately 7,300 mornings of kissing my husband. There are over 7,000 times I have heard the words, “I love you,” in the morning and before I go to sleep. It is the sunsets and sunrises. It is a morning cup of coffee.
It is hearing the voices of my parents and my brothers. It is doing things for the first time like baking biscuits or doing something the thousandth time like taking a long walk. It is trying new foods like kale or cauliflower pizza dough. It is a being a part of new trends. It is watching social media develop and the ability to send video and emojis on a smartphone.
It is watching my nieces and nephews grow from toddlers to adults. It is the incredible highs like a published article or poem in a prestigious magazine or journal. It is incredible lows and sadness as you watch your country fracture and fight. It is crying at car commercials and stories about lost pets. It is donating to a GoFundMe campaign. It is finishing a novel you are sure you would never forget (and then forgetting it). It is seeing artists express themselves in words, photographs, paint, clay, fabric, neon, and every other imaginable material and way.
It is putting on soft pajamas before bed or spending a day in those same pajamas. It is waking up every morning for over twenty years with the words, “Thank you,” on your lips as a cry, a sigh, and a prayer.
Last night I couldn’t sleep, but unlike most sleepless nights, I didn’t get out of bed. I decided to stay in the warmth of two layers of comforters and try to fall deep into the land of dreams. However, I didn’t. I started thinking about my gratitude practice.
Day after day, week after week and month after month, my list seemed to look familiar. I am always profoundly grateful for my husband, for his job, for the benefits of his job (healthcare), and for the care he takes in making sure our house runs smoothly, and I that I am okay. I am also grateful for things like our health (although not perfect), faith, joy.
Last night, I found myself asking, “What else are you thankful for?’ And my reply surprised me. I started listing things like the mattress topper that provides a layer of squishy softness that keeps my back and hips from hurting, the soft new flannel sheets we bought from Target, having a pillow cradle my head, the fact that we can sleep with our window open in January. I went on and on listing the things right around me that make my life what it is and provide me the level of comfort I am used to (so used to that I hardly see or notice it).
After going through dozens of things I am grateful for, I imagined myself in a room with one bowl, one spoon, one house dress, some rice, some beans, and a mat for a bed. I imagined if those were my only possessions, I would be deeply grateful and highly aware of each one. How much more is in my house, though? I have hundreds of books lining shelves and covering the tops of tables. I have Two televisions with Netflix and a Smartphone. The books alone open whole worlds for me, Netflix and the Smartphone connect me to almost every place on the planet.
All of this and I haven’t even given thanks or considered things like touch, hearing, sight, taste, smell. Almost giddy at this point, I say out loud to a dark room on a sleepless night, “Walking. Even though I have a significant limp, I love walking.” And then I realized since April of 2018 I have practiced gratitude on a daily basis, and all these months later that daily practice just exploded inside of me like a jacaranda tree in full purple boom. I knew for certain that in 2019 I would need much less and probably feel much better.
Enough. Grateful. Thankful. Overflowing. The list never ends.
The sun is shining through my window, and I’m going on no sleep but the palm branches swaying in the breeze look beautiful and calming. Overhead there is a hawk circling and probably hunting. I’ve been hunting too, for radical gratitude, which seems to have captured me in the middle of the night unaware and unexpecting.
I know I said I wasn’t going to make resolutions but to be completely transparent I spent three weeks before the New Year making them. Every other year, I have scratched a list out on New Year’s Eve, tossed it in a notebook and then dug it out late December to discover I hadn’t done a single thing on the list (or maybe, I had done one or two if I was lucky).
This year, I was fascinated by the process. I even started some of the resolutions as soon as I made them. For instance, I have been stretching (some would call it doing yoga) for twenty-five minutes every morning for two weeks now. I have also been walking forty minutes five days a week for a couple of weeks.
The thing I realized about all of my resolutions, is that they are all about trying to keep me healthy in mind, body, spirit. The other thing I realized, thanks to one of my guided journals, is that they are not a drag or punishment at all. They are a privilege. I don’t “have to” stretch every morning. I am healthy enough to “get to” stretch every morning. I don’t “have to” walk five times a week, I am healthy enough and have enough mobility to “get to” walk five times a week. The same is true of all my resolutions even the ones I set about writing and reading (I don’t get to read and write when I am experiencing psychosis).
Changing these two small words, “have to” to “get to” makes the difference in my attitude. It makes working on my resolutions a joy, an accomplishment, a privilege, an adventure. Unlike years before, I don’t see my list as a bunch of things I “should do” I see them as a bunch of things I “want to do.”
I have started to use the same language for my chores and other things I find difficult or not necessarily pleasant. I don’t “have to” do the dishes, I “get to” do the dishes because I am well enough to see that they need cleaning.
I know many of you struggle with your mental health in one way or another, and I know it isn’t always possible to talk yourself into a shower or to get out of bed. (Oh how I know these things), but on the days that you are functioning enough to try a task or two, try changing the two words, “have to” to “get to.”
I hope changing these words will change your perspective and help you accomplish new and better things. I have high hopes for 2019, and I think two simple words are going to help me make it a great year instead of just the status quo.