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.
My husband and I are planning a vacation. We are going to a beach town on the Sea of Cortez in Mexico. If you look up the Sea of Cortez, you will discover it is rich in marine life; there are good places for hiking, bird watching, fishing, snorkeling, great conditions for boating or kayaking, and of course miles of beaches to walk. Not all of you, but many of you would enjoy a vacation like the one we are planning. A bonus is that compared to the same type of vacation in many countries, Mexico is relatively inexpensive. Sounds fantastic, doesn’t it?
Why then am I so overwhelmed with anxiety? That is the thing about having my particular brain disease or mental illness, or however, you choose to describe it. Nothing is easy. For most people, planning a vacation is fun, exciting, and the trip is either relaxing, educational, cultural, or a combination of many things (like a foodie trip or environmental tourism). For me, the thought of leaving my routine and being far from my doctors, and from my pharmacy cause me tremendous amounts of stress.
When I was a teenager, I traveled to New York, London, Rio De Janeiro, Cairo, and many other countries and cities by myself. I wasn’t anxious. I wasn’t afraid. I was up for anything although my first love was clothes shopping (I loved buying clothes that no one I knew at home was going to have or be able to get. Being original was very important to me). The fact is even well into my thirties; I could travel by myself without fear or anxiety.
If it were just travel that made my life more difficult than many people, I wouldn’t think that was too big of an inconvenience because we only travel about five times a year give or take a couple of times. But everything with schizophrenia is harder. It is harder to write; it is harder to go to a party, it is harder to go to the doctor (my pulse soars to 150 or above every time I enter any kind of doctor’s office).
I don’t feel sorry for myself, but when I am honest, the truth is, I am a little more tired than most people I know. When daily living takes so much effort, it can be exhausting. I know that I am more fortunate than millions of people, I practice thanksgiving and gratitude every single day, but to act as if my life is perfect all of the time and that schizophrenia isn’t a significant life challenge that would be a lie.
I have preached, written about, and tried for years to get everyone to see me as a whole person, a person with many identities, roles, relationships, skills, and talents. If somewhere in all that convincing I ever made people believe that schizophrenia is a small part of who I am and doesn’t impact me in every corner and crevice of my life, I have misled you.
Schizophrenia is the dog, and I am the leash. I have some control over where it goes, and what it can do but as a powerful animal, it can always break free if I’m not careful and maybe even if I am. It’s a beast and a burden, and you have to walk it, care for it, and pay attention to it twenty-four hours a day because unlike a dog, it doesn’t sleep.
In the city, it is easy to think about man. In the desert, mountains and on a night at the beach, it is easy to think about God. Last night during my prayers, I wanted to search for God, so the image I brought forth in my mind was me, at seventeen, in Cyprus, walking the beach at night.
I can remember looking at the black sky filled with distant lights and thinking, “What did our ancestors think when they looked up from where they were sleeping and saw this vast and endless sky?” “Those lights hold the answers,” I told myself into my pillow. And that is why while I pray, I imagine that beach, that half moon, those stars that will always be countless.
“Some people think schizophrenia is the same as demon possession,” I say as I imagine my toes, bare, sinking into the wet sand. I know that can’t be true because if it were, it would mean doctors had learned how to silence demons.
I wonder as I imagine the light of the moon reflecting on the water, “Can you disregard the Ten Commandments, seemingly lining up to break every one, and still come back to the title of daughter or son?” The stars blink, winking at me from this Greek Island where I imagine myself walking while I lie in bed.
My cousin has cancer. Several of my friends have cancer. I have lost people to old age, tragedy, and hard living. “I’m not unique in my suffering; it is so important to remind myself,” I almost say out loud. If I die at fifty-three, I will have lived more years than many, and far less than others. It is not a curse I carry but the story of the reality of life.
A cloud covers the moon. The beach becomes darker than before. I say to myself, “So many people criticize Christianity, so many people say it is all fairy tales, and call those of us who believe ignorant, hypocrites, and fools,” but I can’t go on each day without knowing I can call to you, question you, run to you from the world that is harsh, violent and sometimes painfully beautiful.
The lights in the sky are shining, and I don’t hear you, but I see you all around. Each star, millions of them leading me to the answers I seek on a beach and ocean far away while the covers on my bed surround me and call me to sleep.
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
I have schizophrenia, but it doesn’t mean I don’t want to be successful at climbing the mountains that are there before me. I currently have myself in training for a steep climb, and chances are I will make it, but even if I don’t, I’ll be in better shape in every way than I was before I set out on this path.
Last night, my husband texted me that he was leaving work at 5:30 and that he would be riding his bike home. When I received the text, I pulled out our backpack cooler and started preparing a picnic. I washed some grapes, made a container full of cut cantaloupe, cut up three different kinds of cheese, packed a sleeve of crackers, and put some of the hummus my husband made in a Tupperware and added two bottles of water. When my husband walked in the door, I was ready to go. He changed his clothes, and we walked the mile to the organ pavilion in the park near our house. We sat on the steps and enjoyed the music of a funk band that was playing.
All summer long, the park near our house has free summer concerts three days a week. As we sat there, tears rolled down my face, and I said to my husband, “I finally feel like I am living my best life.”
In the last year, I have committed myself to make my life better in every way possible. I don’t sit by when things are difficult or not going well and take it. Not taking it, includes the symptoms I have from schizophrenia as well as other things that come up in life, marriage, family, etc.
My psychiatrist has told me that he can change my medications, or add additional medicine to try and clear up the remaining symptoms of schizophrenia but in every case like that, a person has to weigh the pros and the cons. One of the hardest things to deal with more medication is, of course, side effects. I feel like managing my side effects from the drugs I am currently on is a full-time job, and I don’t want to add any more requirements, suggestions, restrictions to that. It is hard enough as it is.
So, I do the best I can to overcome symptoms when they arise or to avoid any triggers that will cause them. The symptoms that cause me the most problems are anxiety, lack of motivation, and a need for increased sleep. Most days the need for increased rest doesn’t create too much of a problem because I don’t have a job I need to be at or any place I am expected to be (if I do have an appointment then it can interfere, but that doesn’t happen too frequently).
The anxiety and lack of motivation can disrupt my life though, and I am finding ways to handle those symptoms that are lessening their occurrence and hopefully getting me strong enough to work. (My dream is to make a living freelance writing, but I haven’t been able to overcome my symptoms sufficient to put in the time and effort and hustle that writing full time (or even part-time) takes).
How am I managing my symptoms better than ever? I am practicing all kinds of psychological tips and tricks to help fool my brain. I keep a gratitude list (which helps with overall perspective -things could be far worse), helps lessen anxiety and helps me focus my mind on what is going right instead of what is going wrong. I read a passage or two from the Bible every day, and I write my response to it. Many of the passages I read are hopeful and give me a sense that I am not alone, and that something more significant than me is in control (this is very comforting and helps with anxiety as well).
To trick my brain into overcoming my severe lack of motivation, I write down tasks every day that I want to complete. I rarely have in the three months I have been doing this completed all the tasks on my list, but on average I am finishing two to four of the tasks I want, and that is way better than I used to do.
Before I started trying to improve my life and lessen my symptoms, I had many days where the only thing I did was watch television and scroll through social media. In the past, I went weeks without getting out of the house. Now, I put on my task list every day, take a twenty-five-minute walk, and for the most part, I do it! Of course, the walking helps with the side effects of the medication (high sugar levels, high cholesterol, weight gain, high blood pressure, etc.) as well as elevates mood and makes panic attacks (I think) less likely.
What do I think helped push me to try so hard to create a system that helps me overcome symptoms? Like most people, I didn’t want to throw my life away, and I want to contribute to society in a meaningful way. Watching television and reading social media post left me feeling frightened, anxious, depressed, and many other negative feelings. In other words, the news and social media were hurting my chances of living my best life.
The past two years have been surreal. I feel like reality is fluid. Reality used to be full of hard facts, things we could easily prove. Now, people we are supposed to trust throw conspiracy theories and “alternative facts” around regularly. Our country is changing at such a dizzying speed, and much of it is shocking, and some of it is alarming. One thing is for sure, as a group, as citizens, as a nation we are divided, and those divisions are causing people to feel hostile and angry. It is as though everyone is on the verge of snapping.
I discovered something, possibly one of the few things I can do to bring generosity, kindness, concern, love, goodness, friendliness, and all the positive things we can feel between two people back and that is to go small. I thought about it during breakfast this morning.
My husband and I had breakfast at a local hotel. When we arrived, the whole room was loud, and every table was full. People were cutting in the buffet line, talking on video conferencing, having to raise their voices to hear their table mates. We learned from our server that ninety people eating in the restaurant were a part of a tour group. The people on tour were on a time limit, so it is easy to understand why they were in a hurry, not waiting in line, etc. but the impact this had on the servers as this person and that person asked for water, or coffee was noticeable.
Every time our server went by, we asked if she was okay. We told her it looked very stressful. We thanked her for everything she brought us and said we hoped her day started to look up. It was evident that our concern for her was going a long way because she made sure to come back to our table frequently to ask if we needed anything, or wanted anything.
My husband and I said working at a buffet when a large group comes in must be very hard. We didn’t see a single person tip their servers. We know from being on tours that the head of the tour should leave a big tip for all the servers to share, but there is no guarantee that that is the custom everywhere.
We decided to leave our server a larger than usual (about double) tip to make up for all the running around she had to do and for putting up with chaos with a smile on her face. When she received our tip, she was so grateful.
As we walked along the waterfront after our breakfast, I told my husband that the only thing I can think of to help out people right now is to go small – make every interaction, every conversation, every greeting, every time I talk or see another person an opportunity to show love and kindness. The only hope I see for rebuilding our relationships and communities and crossing this vast angry divide is to go small and take it one person at a time.
I know we can be the friendly and generous people we have a reputation of being if we heal each other one interaction at a time.
I’m going small, and hoping others will join me and that it can make all the difference.
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.
I need to work on my expectations and taking things personally. I know from years of being on this planet, and hearing the words of some wise people, that making things personal is most often just punishment to yourself. Most things that happen are not personal.
I am in a writing class and on the first meeting when the teacher asked me a question, I told her I have schizophrenia. The whole class heard, and now every time someone doesn’t respond to my homework, or my comments, I think it is because they think I don’t matter because I am just the woman with schizophrenia. Thinking that people’s response, or lack of response, has anything to do with me is self-defeating and ridiculous.
People don’t respond to us because they are busy; they prefer texting, they are shy, don’t want to, don’t need to, are rude, are sick, etc. I could go on with that list for ten more pages, and every excuse for people not responding would be more likely the real reason than it having anything to do with me or my having schizophrenia.
I need to take the advice of some strong women and toughen up buttercup! It is hard to put yourself out there, though and not to receive positive feedback in return – no smiles, no kind words, no words of support – just silence, nothing, nada. It is particularly hard considering the stories/essays/pieces I wrote were deeply personal. I have to remember though, that it is my expectation that people will respond, it isn’t a requirement of them. I need to keep my expectations in check.
I know for some people, especially those of us who have trouble with isolating socially, it would be easier not to take any risks (this is true of everyone not just people with a mental illness). Not taking risks, means you have nothing to lose. But that brings the flip side of that scenario into focus – if you have nothing to lose, you have nothing to gain.
I think it is so important for people (everyone) to push past their comfort zones at least a little bit on a daily or weekly basis. Those of us who are on the road to recovery need to try to push our boundaries, or our boundaries will keep getting smaller and smaller and threatening to choke the life out of us. Most of us need to grow a little more comfortable trying new things and the more things we get comfortable with, the bigger our world gets and that helps with healing.
I know I can’t completely regain all the functioning I had five years ago (an office job, lots of travel, very social, etc.). But I can work to regain some things and maybe even add some that I didn’t have before. To do that, though I will need to keep taking risks, lower my expectations and not take things personally! It can be done; I know it can. The only thing holding me back is fear and myself. Everyone with schizophrenia has dealt with fear; we are experts at it – this should be one we can easily conquer.