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How to get published in magazines will be live this Saturday at 9:00 AM PST. It is free to attend. This is a beginning class.
Registration is here:
My husband and I were flipping through New Year’s Eve shows last night, and we missed the ball dropping in New York because at that very moment we were reading my blood pressure and pulse because the doctor asked me to monitor my numbers at home. (My anxiety disorder is on full display whenever I visit the doctor’s office, and my pulse usually registers somewhere around 120 plus so I was asked to take my vitals at home to make sure that I wasn’t always running that high).
The good news is that at midnight, East Coast time as the ball was dropping my blood pressure was 117 over 72, and my pulse rate was 75. Those are great numbers for me. That is the lowest I can remember my pulse being since I started monitoring it.
If I were superstitious, I would be concerned about the meaning of missing a New Year’s Eve tradition because I was monitoring my vitals, worrying a little bit about the quality of my health for the next year. I’m not superstitious though, but I do try to think positively and choose to see it that health will be a priority for me in 2019. I wish I could say that wellness will be the benefit and result of my efforts, but as all of us with chronic illness know too well is that even our best efforts are no guarantee of a good or great outcome.
I will say that it’s not just my blood pressure and pulse that I hope remain in healthy territory this year. I hope this is a year of health for all of us – you as well as me. You as well. Me as well. Try reading those last two statements again. They have a nice healthy ring to them, don’t they?
Happy Happy New Year!
December Giving To Anyone with a Chronic or Mental Illness
If you are not familiar with an advent calendar, it is a calendar that starts on December 1st and ends on December 25th (Christmas). When I was growing up, we had a felt advent calendar in our living room and the first one to wake up in the morning, removed, the little piece of felt and a picture (like a star, or poinsettia and the day’s date became visible). When my niece and nephew were little, I used to buy them the same type of calendar at Trader Joe’s, and each day they could open the tiny door on the box, and there was a piece of chocolate covering that day’s date. They would eat one piece of chocolate every morning from the 1st to the 25th of December.
Because December and the holidays can be tough on people, especially people with a physical or mental illness, I try to get my husband and me through the season in the best state of mind possible, and one way I do that is to create a twist on the advent calendar every year.
Last year I took twenty-five clothespins and clipped them on a string and hung it across a wall in the living room. I clipped a piece of paper to each pin. On the front of the paper was a number (from 1 to 25) and when my husband opened each piece of paper during December, he found a random act of kindness that he had to complete that day. One day, his act was to open the door for a stranger. Another day it was saying hi to five people he passed on the street. Another day it was leaving a dollar twenty-five in quarters in the laundry room so someone could do a free load of washing.
This year, I am going to take twenty-five envelopes and twenty-five recipe cards. I am going to write an inspirational quote on each of the twenty-five cards, put them in an envelope and number each envelope from 1 to 25. The same idea can be a self-care routine for someone with a chronic physical or mental illness, but instead of inspirational quotes, there can be a five-minute action (some may take more than five minutes) that the person has to complete that day.
Some suggestions for a self-care calendar are: eat one of your favorite foods today, draw a picture, or burn your favorite candle. For someone else it might be, make yourself a cup of tea and stare out the window while you sip it, take a nap, read at least two articles from your favorite magazine, or start a new book. Someone else might like things like, call your best friend, take a social media break, watch an episode of your favorite show, or one of your favorite movies.
There are endless ideas you can use for this gift to your friend or loved one, and the better you know them, the easier it will be for you to come up with ideas for little (or big) things for them to do. If you want to make it even more elaborate, on some days, you might want to include a small gift with the self-care suggestion — for instance, a candle, a book by their favorite author, the latest copy of their favorite magazine. I wouldn’t get carried away though, the beauty of creating this gift is it is in the thought and time spent putting it together. We all know that it is the thought that counts and this gift are thoughts that count (Calendar! Countdown to Christmas!) Okay, I’m better at making holidays special than making puns!
I started my new job as an usher for live performances on Halloween. I have seen the first half of the musical Wicked eight times since then. I can not get the songs out of my head. At my polling place this morning as I was waiting in line to vote, I was singing some of the songs to my husband and people around us started to laugh. I had to tell them what my job is and that the only music I have listened to in the past two weeks is from the production. Several of the people had seen the show and others want to.
Ushering is my second job outside of writing that I have held in eight years. I worked for a day at an Amazon Warehouse, but that turned out not to be a place I could keep my symptoms at a minimum. This new job is stressful only in that I have to learn two theater’s seating charts, and one of the theaters seats almost three thousand people.
I know that sounds easy, but it isn’t easy at first, it is complicated. Each shift gets better because for instance now I am confident that the right side of the house is all even seats and the left side of the house are all odd seats. It seems simple, doesn’t it? I don’t find it simple, at least not yet. There are eight different sections to the theater, and each section has its own set of numbering. UGH! After a month, I am sure it will be second nature. It is just this first month that has me stress sweating every time I go to work because I want to do everything right and fear to make a big mistake.
Of course, I love dealing with the public. Customer service is something I have always enjoyed and the more confident I feel about the location of seats, the better customer service I can provide. I like to greet people, and chit-chat with them. I know that sounds strange because only a few weeks ago, I was writing about isolating socially. Well, for years, I did isolate socially, but now I am in the middle of the crowd smiling, laughing and talking.
I have worked hard these past seven days. I even worked three days of double shifts. I didn’t realize what I was signing up for at first, so November is more difficult than any month going forward. It is hard, and I probably won’t get a lot of writing done, but by the end of November, I should be completely familiar with the larger of the two theaters (the only one I have worked in), and that should make the job so much easier and fun. Because let’s face it, working for a theater is a fun job!
Even though I have been writing for the past few years, that is not at all the same as having a job with supervisors, co-workers, customers, etc. I answer to editors when I have an article or essay due, but for me, that isn’t every day. Also, with writing everything is online by e-mail. At my new job, I have to wear a uniform (instead of pajamas), put on make-up, take a shower, talk to people, clock in, do what is expected of me, smile, be pleasant, take direction, work as a part of a team, handle situations as they arise. And learn new information every day and adjust to that information.
There is one other huge difference between working at home and working outside of the home, my symptoms (except anxiety) are less. Of course, my anxiety is high because I am new and I am a perfectionist when it comes to jobs and school, but beyond anxiety, my symptoms of schizophrenia are less.
It turns out challenging myself and trying to reverse the damage this illness causes to the brain is a good strategy. Lack of motivation? Find an environment where you are accountable and expected to accomplish things. Isolating socially? Force yourself to be in the midst of thousands of people where you are required to laugh, talk and engage.
I know that not everyone with schizophrenia could handle a job with so much customer contact, just like I can’t do equations like John Nash, or practice law and be a professor like Elyn Saks. We are not all capable of the same things even though we have the same disease. I will say that I wish I could start a program to get all people with schizophrenia working. The jobs would be different for everyone, but I believe the benefits would be the same: an increase in self-esteem, an increase in independence, and possibly the reversal of some of the symptoms of an illness that can take so much from you.
I did cry at work once this past week because I felt overwhelmed by not being able to answer everyone’s questions and being slow to figure out where people’s seats were, but it was only once and only a little (no tears rolled down my cheeks, they stayed in my eyes).
Despite the crying, the gains from this past week are huge. After a few more weeks, I think I am going to love my job, and I will most likely be stronger, more confident, more capable, more resilient, more productive, more cultured (from seeing so many shows), healthier and happier.
Whoever said an honest day’s work is good for the soul was on to something, possibly something significant regarding schizophrenia. I have needed time to heal, rest, and be in a stress-free environment, but now, working seems like medicine the doctors forgot to prescribe me.
I received an updated diagnosis from my psychiatrist. My current diagnosis is Chronic Paranoid Schizophrenia and Generalized Anxiety Disorder. I also have diverticulitis and have had to change my diet over the last two years to avoid surgery. I am going through perimenopause and have hot flashes and disturbed sleep. Lastly, I have masses that keep forming in my breasts that require testing, and for one year, I thought I had breast cancer (each time I have a new mass that is a possibility). This list doesn’t even cover the side effects of antipsychotic medication which are high cholesterol, high blood pressure, high blood sugar, and possible liver damage to name a few.
When I read that paragraph and think of all I do to try to live a healthy life, health for me is a full-time job. How much I sleep, and when and what I eat, how regularly I use the bathroom. Then there is making sure I exercise, making regular doctor appointments, having my blood checked regularly, getting mammograms every six months (or sooner if a mass grows), taking my medications twice a day, learning mindfulness exercises, and writing in guided journals that address happiness, gratitude, spirituality, health, etc. I am sure I am leaving out many details of care here.
I don’t believe that everyone can make all the changes and do all the things I do to remain healthy, and I don’t believe everyone, even if they did all these things, would be healthy (I’m not 100% healthy, some of my numbers are borderline). I’m not blaming people who have worse outcomes than me, for their level of illness – not at all. I think people can do everything right and still end up with psychosis, diabetes, cancer, surgery from diverticulitis, high blood pressure, high cholesterol, and many other illnesses. No one is immune from illness or poor health even though so many people would like to believe that it is all in their control because it makes them feel safe.
All I am trying to show by writing down what I deal with is that it isn’t easy to manage schizophrenia, or generalized anxiety or any health issue. Having to watch everything you eat, and having to eat at certain times, trying to get exercise most days, all of that stuff is hard. I wouldn’t be surprised if many people, especially those experiencing so many of the symptoms of mental illness (like depression, lack of motivation, etc.), are incapable of doing all or even half of the things necessary.
There is something else, though. In my latest note from my psychiatrist, he said, “Rebecca has wonderful skills and a positive attitude.” I almost cried when I read that. And I know it is true because despite how hard it is to try to stay well, I am so happy that I get this chance. I am so thankful, grateful, and in awe that I am alive.
On bad days, I feel a little sorry for myself, but most days, most days, I am full of gratitude to see the moon, the stars, feel the breeze and to know what it is like to be loved, and that is just the beginning of my thankfulness. I am thankful that I have food on the table, that I know how to read and write, and that I can come up with ideas to share with people. I could go on for pages, and pages and days and days about the things and people I am grateful to have in my life.
Is chronic schizophrenia hard to live with? Yes, all illness is hard to live with, but is my life worth living, and something I want to continue until I am old and gray (well, I am already almost all gray)? Yes. I want to see thirty more summers, thirty more winters, thirty more falls, and spring, yes, spring!
It’s hard. It’s tough. It’s demanding. It is difficult. But it is beautiful beyond measure and I wouldn’t change my life with anyone because no one is immune from hardship. It is my life, and I believe I only get one, so I will gladly live it, illness and all.
At night before I go to sleep, I pray/meditate. I frequently imagine myself at the edge of the ocean, looking up at the magnificent star-filled sky, thinking of the expanse, marveling at the creation, wondering about the Creator. I imagine myself sitting in the sand, lighting a candle for every person I know who needs support, care, healing, a boost to their finances, or is battling one problem or another. I can sometimes light these candle for fifteen to twenty minutes. I don’t leave out my enemies because I hope that the fact that they are trouble in my life will have a resolution and they will no longer fall into that category. This quiet time in my day, just before sleep, is when I think of others, make my requests known, and try to figure out what it means to have a relationship with God.
Two nights ago, after lighting the candles for my family, my friends, and my adversaries, my thoughts roamed to the leaders of this country and the idea of rich people. What do rich people, I mean really rich people have that I don’t have? Mostly they have access to people and places that I would not be allowed entry or access. They might meet the CEOs of companies or dine with a celebrity. But on the other hand, I can read the same books they do. I can watch the same movies they watch (theirs might be viewed in a home theater or at a private screening and mine might be experienced in a worn out robe, on my couch, on Netflix), but I can enjoy many of the same things the rich do.
And do you know where this thought process, imagining, trying to discover my place in the universe and my relationship to humanity and the creator led me? I see the same sky that rich people do. I watch the same sunrise and sunset that they do. I can smell jasmine while walking down my street. I can walk on a beach and dip my feet in the ocean. I can climb a hill or hike up a mountain. I can swim in a lake. I can enjoy good food and a great cup of coffee. Money, if you have it or if you don’t, that doesn’t prevent you from experiencing many of the mysteries and pleasures of creation.
And the greatest of all equalizers is that there is nothing that insulates the rich from death. We are all going to die, and that evens the playing field. The homeless have to walk the path, I have to walk the path, middle-class people have to walk the path, and the super rich have to walk the path. We will all find ourselves far from the sunrise of our lives and deep into the evening where death is a reality and something we can’t avoid. It may sound morbid to think so much about this, but it ties me to humanity. It is one of our most profound and significant threads that weaves our lives together. We are connected whether or not everyone wants to see it, or admit it.
So many people are using their money to stop the aging process, to get the best medical care, to eat the healthiest food, to hire trainers, and yoga masters, etc. It all boils down to the same things, in the end, none of us can outrun it, none of us can pay our way through it. I don’t find this terrifying, I find it liberating, and I feel like I have a connection to everyone. It is beyond belief the way we try to separate ourselves from one another, to mark and point out our differences only to discover that the largest things in our life are something we all share.
We will all close our eyes for a final time. I’m not on a race for my day, believe me. But it amazes me that over seven billion people alive today will have to come to terms with it in one way or another, it is inescapable, it is profound, it is us, it is human, it is our journey, it is life, and like birth, everyone must experience it, ready or not.
My mind is like Twizzler candy, all in a twist. Two weeks ago, I finally got up the courage to make a doctor’s appointment and have two spots that people keep telling me to see a doctor about checked. One, I have had for twenty years (I got it checked once ten years ago, and the other, has been growing on the side of my face for six months to a year).
At the dermatologist, I whooped and squealed when they said, the spot on the side of my face is a barnacle and is benign. I got up the courage to show the doctor the other, older, more ominous spot on my shoulder and she said, “Oh, that! Of course, people are concerned about it because they see a pocket of blood, but it is just a grouping of broken blood vessels. You will probably see more of them on your body as you age.”
For the first time in over two years, I don’t have a major medical concern that might be cancer, lead to surgery, or need medication for treatment. Right now, I am relatively free from serious medical concerns except schizophrenia. That hasn’t helped my mind, though. My mind is still in, “I’m probably going to need serious treatment, and I might die mode.” Considering chemo, radiation and two different types of surgery for over two years has caused a type of catastrophic thinking in my brain that is now automatic.
I am a big believer in trying to rewire the brain to break destructive habits and create a more positive, happy, productive existence. Not only does it take time and effort to break negative thinking patterns, but it also takes some calm, some peace, and some distance from the crisis. I just started to get that distance on Tuesday (four short days ago).
When I look in the mirror, I still catch myself avoiding looking at the left side of my face to keep from seeing the round patch of discolored skin there, because I tried so long to trick myself that if I didn’t see it, it wasn’t there and couldn’t be cancer. I also catch myself avoiding drying my breasts with a towel after a shower because I don’t want to accidentally feel the 14 cm (or one of the smaller) masses that have lodged there, thus reminding me of the tests I still need or that I am waiting for results.
Most of us with schizophrenia know the statistics. On average our lives are twenty years shorter than the national average. I am keenly aware that I am in my fifties and will be celebrating another birthday in three short weeks. I am a few short years away from the bleak statistic.
Nevertheless, I want to go from crisis mode, from catastrophic thinking to believe I will live until I am at least eighty. So, every morning I tell myself, “It is possible for me to live until I am eighty.” I know this seems almost childlike in its simplicity, but it is helping untwist my very tired and traumatized mind. Thinking that you might have to deal with life-threatening medical problems for two years straight is exhausting. I believe it changes the way the brain functions and it has a huge impact on our future outlook.
I told my husband the other day; I am tired, so deeply tired. This should be of no surprise to me or anyone else. I don’t need physical rest; I need emotional rest. I need not think that death is looming or surgery, chemo, radiation, etc. are right around the corner. My mind has been like a warrior preparing me for the worst for over twenty-four months.
I have so many friends who have faced these things and received worse news than me and had to go through these treatments. I am not trying to compare my negative diagnoses to their more difficult positive ones. I am not trying to insinuate that my experience is more difficult or even on par with theirs, I am not. I am only saying that my brain has now been trained to be in crisis mode, in preparation for the worst mode, in bad news and worst-case scenario mode, and I can see and feel the consequences of that.
Now, it is time to retrain my brain and like I started out this blog piece saying, my mind is twisted. I keep telling myself positive things and keep catching myself doing frightened, scared, nervous, uncertain things.
I went with my husband to the doctor to get a bump on his back checked out, and I told the doctor, “I’m sorry, I have schizophrenia, I worry about everything.” The doctor said, “That has nothing to do with schizophrenia, I worry about everything, too.” I believe that, and that’s why I’m sharing with you.
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
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.