Here is my latest essay on Psych Central. It has a content warning for death and dying.
The bluebird is a messenger of the Divine. They fly side by side with angels. (From Universe of Symbolism)
I just hung up the phone from talking to my brother. One of his friend’s, daughter also had schizophrenia.
Sing me a song bluebird.
I say had, because she found a gun, found the cartridge, put the two together, took a walk and never came back.
Sing me a song bluebird.
Her father goes through all the “what if’s” and the “if only,” his pain so raw and his mind searching for answers.
I know the voices she heard. I know the terror. I know the fear. I know how they tell you to take your own life. They demand it, and some of us give in. Fighting voices is a serious battle, one some of us will never win.
Sing me a song bluebird.
I find her on the path where her body was discovered. I hold her in my arms. I want to tell her, “Don’t give up. Don’t give in. Beautiful girl there can be love, there can be children, and there can be a career. There can be sunsets, and harvest moons, and a swim in the ocean. There can be life. You were barely past childhood and the oyster would reveal her pearl to you, in time.”
Sing me a song bluebird.
All of us who live with schizophrenia are warriors. Sleep little warrior. Dream. Dream of us all in a place where there is quiet but no desperation. Dream us all in a place where there is light but no interrogations. Dream us all in a place where our minds are not the enemy but the connection to our heart and to our joy. Dream. Dream. Dream.
Sing me a song bluebird.
Sing me a song, show me a sign.
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.
I am saying the final good-byes to my husband again – I plan for it, I prepare for it. Once again, I am convinced while I am waiting for blood and urine tests to come back from the doctor that I have bladder cancer and that I only have a limited time left to live. I am the most frightened of the treatment. The last time I went to the doctor my pulse rate was 125. My doctor joked that I was running a marathon in his office. It is mostly the anxiety, but I don’t know which is worse, the anxiety, the paranoia, or always thinking the worst is going to happen.
I have planned my death many times. If I am given a grave diagnosis, I want to accomplish some things before I am cremated and sit on the night stand beside my husband’s head full of thick curly black hair that he loves to have me run my fingers through massaging his scalp with the tips of my finger nails. “It itches” he says. “It gets so hot with all this hair” he tries to explain to me, who has baby-fine hair that gets thinner every year. I want to sit in an urn beside him while he sleeps. I want to be the one who watches over him – forever and always.
If I am going to die, I want to write my husband, who reads everything I write with great enthusiasm and support, twelve letters, one to be opened every month the first year after my death. In the letters, I want to encourage him. I want to remind him that someone, me, loved him just the way that he is. I want him to remember that I never asked or tried to encourage him, or force him, to change. He doesn’t need to better himself or change to please someone. I found him to be put together beautifully – his manners, his compassion, the way he remembers how people take their coffee, the way he puts other’s desires before his own – perfect, no need for improvement.
I want him to remember those things and hold them in his mind and heart so he never feels that he must shuffle pieces of himself around to make a perfect picture puzzle in order for someone new to love him. His pieces fit together nicely and create a mosaic of color and textures that are lovable without further arrangement or trying to get a slightly curved piece to somehow fit into a slightly triangular piece – forcing a fit that will throw off the whole.
I want him to remember that we laughed every day. I want him to remember that he has known love – to be loved, to love, to be in love, he has known it all unconditionally. I want him to know that he experienced that love and laughter for almost twenty years while some people don’t have it for an hour.
I want to have a ceremony of thanksgiving with him where we reminisce about all the wonderful moments and days that made up our lives together. I want the two of us to be able to say good-bye with gratefulness for having had each other not one day, not one week, not one month, but for nearly two decades.
I want to pass from this world, at home, in my own bed, holding the hand of the man who I think is better than every other person on the planet – over seven billion of them.
I want the last kiss to be a kiss from him. I want to see his eyes as my eyes are closing. I want him to know that the story of our love was too unbelievable to write – it is just that good.
I want him to remember that someone who makes you laugh is more important than that extra ten pounds. Someone who holds your hand while you are getting tested for cancer is more important than polished toes and perfect breasts. Someone who will always offer you the biggest slice of cake or pie is more important than someone who knows all the brand names and buys them.
And when he has remembered it all, he can let it go, and give his heart again so that he can try to be a guy who wins the lottery of love twice in a lifetime.
I hate going to the doctor. The last time I went (just over a week ago) my pulse was at 125. My doctor jokes that I am running a marathon in his office. It is so stressful to me to be anywhere close to a doctor’s office.
Today I have to get my blood work done. Everyone on anti-psychotics needs regular blood work. The chances of getting high cholesterol, diabetes, and other ailments are greatly increased by the drugs.
I have to get other tests too. I have been having a problem in another area of my body for several months now and I have been on two rounds of anti-biotics and I don’t know if it is cleared up yet. Of course, me, being me, I think I am dying.
I have thought I must be dying for several months now. I have obsessed over how I want to behave if I am dying and the things I want to do in the time I have left.
It is absurd to always jump to the worst case scenario, but I do have a mental illness so bizarre and other types of thinking often go hand in hand with my diagnosis. Mental illness or not, I can’t possibly be the only person who fears the worst.
So, for the last few months I have been thinking about my mortality. I really want to live until my husband retires so I can spend long days with him traveling across the country again. That is my dream. To live long enough to spend 5-10 years in retirement with my husband – where our days are free and we can take any road that looks interesting.
After the shootings in Oregon the other day, I realize that I have nothing to be angry about even if I do have a terminal illness. Complaining about the life I have had would be ridiculous when so many people go to work, go to school, go to a movie and never make it home again. No chance to prepare. No chance for doctors to try and cure or prolong their lives. No chance for Mother Nature to take her course. No time for planning. No time for good-byes.
I nearly died twice in 1997. I was saved by two strangers on two separate occasions. I honestly feel that every day I have lived past that time has been a blessing and a bonus – a true gift from God. I have had almost twenty years of happiness with the love of my life. A love I didn’t know was possible all those years ago. I have walked hand in hand with my favorite person in the world, in Paris, in Abu Dhabi, in New York, in Los Angeles, and lived six months in a van with him crossing the country.
Schizophrenia or no schizophrenia I was given a second chance and these added years have been the very best of my life.
I always need to prepare myself for the worst when I have something wrong with me, and whenever I think of the possibility, I eventually come back to thankfulness and gratitude.
I am ready for all my tests tomorrow – come what may. As usual I will crack a joke to the person taking my blood, and smile, and be chatty in order to overcome my nervousness. S/he won’t know the whole process I have had to go through to in order to give samples of my blood and urine.
Only I know the full impact these things have on my life. A life, I’m thankful to still be living, and when my time comes I hope to still feel the power of thanksgiving for every day and every week, and every month, and every year I survived those suicide attempts. So many people never get that second chance and I have had so many.
Off to the lab. By mid-week I should know how I am doing. There is probably nothing going on that some medicine can’t fix. Either way, I have prepared for the worst and I’m better for it. Somehow the whole process brings the beauty and sacredness of life into focus.
This is the blog of a caregiver whose twenty-one year old son has schizophrenia. I love following this blog because the woman who writes it, writes well, posts some interesting research on schizophrenia, and has a very different perspective than my own.
Her post yesterday (the one I linked to above) made me feel a wide range of emotions. I felt angry at her for suggesting her son’s life wasn’t of value without her there to make sure he was okay (I know she is worried that her son will not be understood, cared for, and that life might be cruel to him without her, but as someone who also lives with the disease her son does, this was a difficult read).
Then I thought about myself. How many nights, with my head resting on my husband’s chest, have I whispered, “Please tell me that I will die before you. I just want to go before you.” My husband’s response is always the same when I say this, “You are so selfish. Why do you think I would do better than you, if I were left alone?” Usually, I give him the reasons I think he would do better, but to be honest, if I knew I was dying a couple years in advance, I would spend the time I had left trying to find him a partner. I really don’t want either one of us to be left alone. It would be hard to lose your best friend, especially a best friend you spend every day with and curl up with at night.
I frequently think and talk about death. Here is an article I wrote (under my maiden name) about my second experience with a breast cancer scare (to my friends who have actually had breast cancer, I hope you will forgive me for writing about how freaked out I get just thinking I have it).
I don’t know what life would be like for that blogger’s son if she dies before him. I don’t know what life would be like for me if my husband passes before me. I know I want to believe that in both situations everything, given enough time, would somehow, and in some way, be okay.
It is a difficult situation to try and grapple with. The thing about having a mental illness is you can’t always choose what you’ll spend your time thinking about. It’s not just me though I bet every caregiver has run similar scenarios through their mind.
There is tough stuff and there is really tough stuff. This whole topic is the latter. Having the thought that your loved one might be better off to die before you, is probably a common and guilt inducing thought for many caregivers. Just know you can say it out loud in certain places no matter how terrible it sounds. I have schizophrenia and I am capable of being honest about what life would look like without my muscle man, my Hercules, my Superman, my love. I’m not sure I’d be able to do it.
I don’t know. I just don’t know.
This article is depressing and shocking. On average, mentally ill people live twenty years less than other people in the United States. This is totally unacceptable. I hear the voice of outrage over many things here – police brutality, racism, sexism, etc. but I long to hear the outrage over the treatment of the mentally ill.
It is just so very quiet.
I liked a page on Facebook for the Treatment Advocacy Center, and I have often felt a little uncomfortable with the articles that pop up in my newsfeed that are posted by them. Most of their articles are about people with schizophrenia who after being unable to get treatment become violent or have some other negative outcome. The position they take and promote about schizophrenia seems to me to support all the myths. I feel badly for the people sharing their stories, but the people sharing their stories are parents or relatives not people who suffer from the actual illness.
This is the first sentence of an article that popped up in my newsfeed last week: “There are 3.5 million people in the United States with schizophrenia alone, a fate often worse than death.”
That sentence is so stunning to me, that I almost don’t even want to comment on it. Psychosis is terrifying. Psychosis is the most frightening thing I can imagine, because inside psychosis my worst fears often play themselves out. For example, I am afraid of being tortured, and I can’t even watch someone being tortured in a movie or on television. The thought of it is so horrendous and terrifying to me. But, when I was psychotic there was one point when I thought my husband was going to run my hand through a table saw to torture me. That is an example of the nature of psychosis.
Yes, it is terrible, but even after spending six months being actively psychotic, I didn’t want to die. When the voices eventually told me to kill myself something broke through in my mind (at the time I thought it was Jesus) and I ended up calling my husband and asking him to take me to the hospital. That trip to the hospital saved my life.
“a fate often worse than death.”
That someone who doesn’t suffer from paranoid schizophrenia would write that our fate is often worse than death is shocking to me. I don’t know anyone with schizophrenia who would prefer to die, or to not have lived. How can someone who has never walked in our shoes make that determination for those of us who battle this illness every day?
Schizophrenia is no walk in the park. The people who have it are probably stronger in some ways than most of the people who don’t have it – they have walked through fire, I guarantee you, but saying that having schizophrenia is “often a fate worse than death” is extreme and offensive.
What would you give to fall in love?
What would you give to see a sunset over the Pacific?
What would you give to taste food that is so good your whole body feels it?
What would you give to laugh so hard that no sound comes out?
People with schizophrenia are capable of all the things I just listed, and every one of those things is worth being alive for even if it means you have to suffer. Suffering is a part of the human condition. We all suffer. Just because I have to fight every day for reality and for my sanity doesn’t make me wish I was dead, or that I was never born.
Having my husband kiss me before he goes to work every morning, and putting my head on his chest before I fall asleep, makes me want to live well past one hundred.
Don’t tell me I have a fate that is often worse than death. If you think that is true, you know nothing about life and truly living. I have paranoid schizophrenia and if that is your attitude, I wouldn’t swap places with you for anything.
Leave it to a group of poets to create the best memorial (celebration of life) I have ever been to. The last funeral I went to, I got the giggles so badly, because the whole thing seemed so absurd. A pastor who barely knew the deceased read off a list of things he had been told by her family. There was nothing connecting me to the memory of the person I once knew.
But yesterday was different. Way different.
I wrote several weeks ago that my mentor, teacher, and friend, Steve Kowit, had unexpectedly died.
Yesterday a group of his students, that I have been studying poetry with for two years, gathered in the home of one of our fellow students. We sat around in a circle in the living room. There was coffee, homemade brownies, a variety of nuts, and bottled water.
We talked about our future as a group. We talked about how to proceed without our beloved Steve. We decided to meet as before, on the last Sunday of the month, and work our way through a poetry workshop book that Steve wrote called, In the Palm of Your Hand. We decided to take turns facilitating the group. We all agreed no one could step into the shoes of Steve.
After we had taken care of business, we started talking. It happened naturally. One person told a story about Steve, about the suspenders he always wore, about how he used to ask us to raise our hands if we didn’t understand the poem we just heard, about how he used to force snacks on us.
The stories continued. People brought out poems and we went around the circle, and most people read a poem or two that they had written about him since his passing. I cried so hard, that tissues were handed to me in every direction. Most people cried. I found it the hardest to keep my tears under control when the men cried. All of our hearts were breaking.
Then someone would say something and we would laugh, from the deepest parts of ourselves.
We sat that way for three hours telling stories about “Our Steve” about a man who had made such an impact in all of our lives. We laughed and cried together. We shared our grief, our heartache, our sorrow. We shared our incredible loss. We shared our love.
And we bonded. And we healed. And we found a way to go on, a way that would have made Steve happy. In fact, the whole gathering would have made him happy. We talked about the man. The real man, as we all knew him and loved him.
We honored his memory in our togetherness, in our laughter and in our tears.
Leave it to a group of poets to make me feel every high and every low for three straight hours and want to see them all again as quickly as possible, because they hold the magic of memory and healing in their words.
It’s not good-bye. We will still have his words to guide us maybe we will even leave the chair at the head of the table open, so he can join us as we critique our art in the way he taught us, with laughter and love.