My husband suffers so much disappointment due to my illness, but he would never say that, or even show it. I know and can see that it is true, though. When we first met, I would drive from Seattle to Los Angeles by myself to visit him. I haven’t driven a car in the last eight months. My husband and friends drive, or I take the bus or walk whenever I have to go out.
Cupcakes and humor.
When we first started dating, I would fly (even overseas) by myself. Now, when we travel we have to plan the trip around certain times of day (less anxiety), and we have to pack and prepare in ways to try to make the trip as pleasant and as smooth as possible. I almost always am overcome by anxiety at some point in every trip (usually at the airport and on the airplane).
Cupcakes and humor.
I was once so independent compared to how I am now. I was once so social and active. Now, we spend a lot of energy to make sure that my life is as stress-free as possible to keep symptoms at a minimum. I stay at home and have very little stress or interactions during the day. I even limit what I post on social media to avoid confrontation with others (stress).
Cupcakes and humor.
I know my husband would enjoy socializing more, but I will rarely agree to go with him (isolating socially is a real symptom of schizophrenia and one that has increased in me every year). There is so much my husband enjoys that he has given up to help provide me with the kind of environment I need to give me the most symptom-free existence.
Cupcakes and humor.
For all the sacrifices my husband makes, I try to be a supportive partner when I can. Once a month my husband asks me to make cupcakes because he has taken it upon himself to celebrate the birthdays of everyone in his office. My husband reminds me on the last Monday of every month, “If you feel up to it tomorrow, can you please make cupcakes?” It wouldn’t matter if I were suffering from my worst symptoms I would try not to let him down by having the kitchen counter free of the little cakes that help him lift the morale of his coworkers. It is so little to ask of me. In the past six years, I have never once let him down.
Cupcakes and humor.
When I am comfortable, I make up random songs and sing them constantly. I am a terrible dancer, but I love to shake a little booty with absolutely no sense of rhythm while walking from one room to the other in the house. I love to tell a lively story about anything and everything. To make this simple, I love to see my husband break into a belly laugh or at least a big smile, and no one can do that to him the way I can. So yes, it is the simple ingredients that hold even strained marriages together. May I suggest Cupcakes and humor?
If you have been on a plane lately, then you know that flying has become an almost miserable experience. No one wants to pay for their baggage, so they try to carry on as much as possible. Everyone tries to get on the plane as quickly as possible to make sure their carry-on bag has space in the overhead compartment. Seats are smaller. The seats toward the front of the plane (behind first class) are now considered an upgrade on most flights and cost extra money. People are rushed. People are uncomfortable. You no longer get a meal on a flight (unless you pay for it, and even then, they are usually out of most of the choices by the time they get to the seats near the back).
Airlines tend to be the one industry that doesn’t care at all about customer service. Rather than getting better over the years, they have been getting increasingly worse.
That is why my story of my trip to Seattle on Alaska airlines stands out.
When my husband and I went to check in on the Internet the day before our flight, there were no seats left together. My anxiety started to go up. When I fly, it helps me to be in an aisle seat because I drink a lot of water on the flight and have to get up frequently to use the bathroom. My husband, always the good sport, takes the middle seat even though it is the least desirable, so that we can be together on the flight and he can help me if I am overcome by anxiety.
We went to the airport at 6 in the morning (two hours early) to see if we could change seats and also to make sure that we weren’t rushed or hurried. When we arrived at the airport we asked a woman by the Alaska ticket counter if we could change our seats. She told us it was better to change them with the person working at the gate.
We headed for the security line. We took out all of our liquids. We took off our shoes. We put our laptop in a bin by itself. We emptied our pockets. We have traveled enough since 9/11 to know the rules about security. We made it through the x-rays (I got patted down) without incident.
We found a departure board and located our gate. We started walking down the long corridors with the people movers. We had plenty of time, so we walked on the carpet in the center instead of on the moving sidewalk. At our gate, we found two seats, and made ourselves comfortable. There were no employees at the gate yet. My husband went to get coffee and my water for the flight, and when he returned I went to find the restroom.
At the gate next to ours, there were Alaska employees, and even though it is so unlike my husband to do anything outside the rules or norm, he went to the neighboring gate and asked the woman working if she could seat us together. She changed our seats (moving us up a few rows, but we still weren’t together). She told us to wait until the crew members for our gate showed up.
As soon as the employees working our flight showed up, my husband jumped up and went to ask if they could seat us together. He told the woman at the gate, “My wife has a mental illness and can’t fly alone.”
The woman my husband talked to said she would work on it, but she wouldn’t have an answer for us until almost the time that we needed to board. The flight was a full flight. There was only one seat open on the plane. She must have had to ask other passengers if they were willing to move to try and accommodate my husband and me. I am not sure, but close to the time we were boarding, she called my husband up to the gate and gave him boarding passes for two seats that were next to each other – an aisle seat and a middle seat.
This may not seem like a big deal, but in a travel environment where no one seems to care about the comfort of the passenger, this was extraordinary. The Alaska employees worked hard to make sure that we would be as comfortable as possible and they did it willingly, kindly and with smiles.
We booked another flight to Seattle last night, and without a bit of thought or hesitation, we booked it on Alaska.
As we get older we like to think of ourselves as aging gracefully and leaving some of our youthful preoccupations and concerns behind. But getting older can also bring with it an increased risk of falling, more physical fragility, and those things can make people fearful of doing things they once did. People lose their confidence in their abilities and this lack of confidence can turn into fear and the loss of some of the person’s independence.
We witnessed this loss of confidence to move as freely, or to try new things, or go new places in some of the people we have visited this holiday season, and it made me think about my own life over the last few years.
I have become very comfortable isolating socially, staying in the house all day, not visiting parks and museums like I used to, never driving the car (I think it has been over six months since I got behind the wheel), and basically staying home as much as possible.
I noticed that I, too, am losing much of my confidence and therefore my independence. The woman I was four years ago – working, shopping, running errands, traveling by myself, etc. Is not the woman I am today and looks nothing like the woman I was before my first episode who would jump a plane and travel by herself to Europe or the Middle East.
I don’t want to travel to another country by myself anymore, but in the New Year, I would like to gain back some of my independence and confidence. I know that having that confidence actually makes me stronger and better able to handle my every day symptoms.
These may not seem like big goals to you, but after the holidays, I am going to start going to the grocery store by myself again. I am going to learn how to drive our new car. I am going to keep my bus pass current and meet my husband after work a couple of days a week to make sure I am getting out of the house. I am going to spend time writing at coffee shops. I am going to attend more writer’s groups.
Not doing all the things above, and spending my time at home, has made me so fearful and has destroyed my confidence in my ability to handle situations by myself. All of this has decreased my independence dramatically.
I have a desire to be as strong and capable as possible. I don’t want my world to get smaller and smaller each year as it has been – I want to expand and grow and that means I am going to have to work at doing some things that other people take for granted.
I think the effort will be worth it though and with each small success my confidence will grow and grow and so will my independence. Who knows what will be possible for me at this time next year? I don’t know, I only know my world will be larger and I will be better for it.
In the face of a challenge I don’t want to cower with fear or insecurities. I want to say, “Bring it on!” in my most powerful voice, and really mean it.
This morning schizophrenia doesn’t seem like such a big topic. It doesn’t seem quite as pressing as usual. It certainly isn’t on the forefront of my mind.
I am thinking of Paris. I am thinking of all those innocent people who lost their lives and how their families are grieving and how the witnesses will probably suffer psychological disturbances for the rest of their lives.
I am thinking there was a time when I used to say, “Mom, I’m going to ride my bike,” and I would be outside until my mother blew a whistle to call all four of her children in.
I am thinking of a time when I went door to door by myself, in neighborhoods that were not my own, and sold Girl Scout Cookies.
I am thinking about a time when I walked to school and back home again, or walked several miles to a friend’s house.
I am thinking of a time when schools didn’t have metal detectors.
I am thinking of a time when flying on a plane was unusual, and most of the people I knew had never done it.
I am thinking about a time when going to another country was exotic not something people did for business or their annual vacation.
I am thinking of a time when I had never heard of the word terrorist.
I am thinking of a time when we were not at war.
I am thinking of a time when murder wasn’t on the nightly news.
I am thinking of a time when we owned bb guns and had never heard of an AK47.
I am thinking of a time when I was so excited to go to a baseball game or a move theater and my safety never occurred to me.
I am thinking of a time when the only monsters I knew of were under my bed or in my closet, but would disappear as soon as my parents or brothers turned on the lights.
I am thinking of the loss of innocence and how we never get it back again.
I am thinking of all the murders we have to try and live with on a daily basis. How much terror is too much terror? What will happen to us if as adults we can no longer grieve the sheer number of those murdered? Will it destroy our hearts?
My husband and I were driving back from Flagstaff Arizona yesterday where I attended a four day writing conference. In Yuma we stopped at a Love’s gas station. A young man with a yellow shirt, braces, glasses, and a big smile held the door open for us. Both my husband and I thanked him, and asked him how he was doing. “Great! It is a nice day today.”
My husband and I headed off to the restroom, and then met up at the coffee station. They didn’t have any liquid creamer that wasn’t flavored so I chose Almond Joy for my coffee. I don’t normally like flavored coffee, but we were on the road and being on the road requires many things outside of my norm or routine.
When we went to the cash register to pay, the young man that held the door for us started to ring us up. “Are you having a nice day? He asked.
“We have been driving all day.” I said.
“Where did you come from?” He asked.
“We came from Sedona and Flagstaff.” I said.
“I want to go to Sedona. That is on my list.”
“It is so beautiful with the red rocks all jetting up to the sky. There is a church there, called Church of the Holy Cross that you have to visit if you go.” I said.
“Is the church in the rocks?” He asked.
“Yes, it is. You can see the whole canyon from the altar. Behind the altar is one big window looking out. The architect was a student of Frank Lloyd Wright’s.” I said.
“I can’t wait to go.” He said.
We said our good-byes and as we were walking to the car my husband said, “He may not know who Frank Lloyd Wright is. Not everyone knows or cares about the history of architecture.” My husband said.
I immediately regretted the reference to Wright. While trying to build a connection with that young man I had severed the tie by parading my knowledge of architecture. If he didn’t know who Wright was I had built a wall instead of a bridge. I had put myself above him. I had shown my education and experience. In essence I had waved a card of privilege – a privilege to care about art and architecture, traveling, etc. Sedona is only a few hours from where he works and he has never been there.
I should have known better. The same thing happens to me when I am reading many writers, and they will make a reference to a Greek God, a philosopher, or a long dead writer and I will be lost by the reference. The writer will have put distance between themselves and me – they will have upped me in education and their knowledge of culture or history. I know with Google I can easily look any reference up, but the negative feeling it generates, the space it creates between me and the piece of writing, I often don’t care to look it up. I often give up on the piece and say, “This is over my head. This is too academic. This wasn’t written for me.”
I know how it feels to have someone else’s privilege (college, graduate school, possibly a PhD), or even world travels – references to places, or food, or art, or architecture – all of these things made reference to without an explanation making it seem like, “Of course, everyone knows this!”
I don’t want to push people away I want to find ways to bring them closer. I want to hear their stories and to possibly tell mine. I want to hear their hopes and dreams or be a witness to their heartbreak and pain. I want to speak simply, not because people can’t understand, but because many people haven’t had the opportunities that some of us have been lucky enough to have. That doesn’t make a person dumb, or uneducated. It may mean they have had to focus on a going to work from a very young age, or taking care of a sick parent, or maybe they know all the words to every Star Wars movie.
Who is to say what knowledge is anyway?
If we really want to reach people we have to think about our audience. Maybe some of the writers I read aren’t writing for me, maybe they are writing for people just like them, but that isn’t true of me. I want to be accessible to everyone. It’s more important to me to build a connection than to show you where I’ve been, what I have studied, the culture and history that I know.
Let’s get down to the real stuff that makes up life – let’s build a bond so I can find out what makes you cry or what makes your heart beat faster. That’s where living is, not in a reference to a dead architect.
activist, advocacy, Advocate, anxiety, climb, creativity, dessert, dreams, fellowship, hope, inspiration, mental health, mental illness, mentally ill, mountain, panic attack, schizophrenia, travel, war, writing
I frequently tell people not to let schizophrenia steal your dreams. I have said, “Your dreams may change, but don’t let schizophrenia steal them.” What does that mean for someone who has symptoms every day, but still has a heart full of dreams they want to experience?
There is a writing fellowship that I want to apply for, and if I were chosen, it has the potential to change my life, but as a participant, I would have to go to another city for a month.
The first consideration is getting there. I rarely travel without my husband (on a few occasions I have flown to one of my parent’s houses by myself). What if while I was there, in a strange city, by myself, that I had a panic attack? My husband and I rarely spend any time away from one another. I feel like my husband is an extension of my body, and to be removed from that would be disorienting and painful. If I had symptoms of paranoia (which are frequent for me) there would be no one to talk to me about reality. I know I would experience extreme homesickness which can make a person physically ill.
I’ve never lied and said that having schizophrenia is easy. I have said, “We need to work harder than other people,” and I believe that is true. We have to work harder just to get to the place where others are waiting on the start line. In order to get the finish line, we may have to battle monster after monster and still keep our feet and arms moving.
This disease is not for the faint of heart. I believe people with schizophrenia are some of the strongest and most courageous people I know – we fight real stigma, discrimination, and at the same time we fight the war that goes on in our minds. We also know that there are often casualties of war – I’m not going to let my hopes and dreams be one of those losses.
Those things and more are the mountain in front of me, but I have decided to submit an application to the program. If I get to the point where I am actually accepted into the program, I will begin worrying about the gear I will need to make that climb.
The strange thing about having a good life while living with schizophrenia is that you constantly have to overcome obstacles to get to the desserts. Where do we get the energy and resources to put up the fight every day? I don’t know. I do know that some days I am better at making my way up the mountain, to the finish line, to the dessert table than others.
No matter what, I keep moving though and I know there is chocolate lava cake just around the next corner and I want to get there, sit down, and take a bite.
Let’s get moving, there is certainly enough cake for everyone, and it’s no fun eating it without your fellow warriors.
This past weekend my husband and I watched a ten or twelve year old movie about Frida Kahlo. I was introduced to Kahlo’s work and life at an exhibition in Southern California and ever since that time, I have loved what I have seen and read about her. Her life is an inspiration to me. She was in pain most of her adult life, and yet she kept on living. Not only did she keep on living, she thrived. Her life is a wonderful example for anyone who has chronic pain or a severe illness.
After watching the movie my husband and I decided to get out of the house for a while. We went down to the waterfront and because it was hot, and because I love books, we headed for my favorite novelty shop/coffee shop/bookstore. When we were there I had an idea. There have been many times when my husband and I have read books to each other (usually while traveling) and I thought it would be nice to get a book for us to take turns reading to each other.
Zen and the art of Motorcycle Maintenance.
I imagined it would be the perfect book for us right now. In 2006 we took a road trip for six months and we loved it. We went to thirty four states. We talk about doing it again as soon as my husband can retire. Last week, I found a map on the Internet of many of the most famous road trips – road trips taken and written about by famous authors. Someone took the time to map out these famous author’s paths across the country. Zen and the art of Motorcycle Maintenance, is on the map.
I loved the book when I was in my twenties. I have a feeling I will love and appreciate it even more as I near fifty.
My husband started reading it to me two nights ago. The message was about taking the least traveled roads, looking at the beauty that surrounds you, how we work to live, but don’t really enjoy it. So far, it also contains the message of simplicity.
I am disabled, but I’m not dead. I want to have hopes and dreams like everyone else. Even though I have a severe mental illness, I want to thrive. I want to be inspired. I want to live a life with as much meaning as possible.
I am certain my husband and I will finish the book, and begin to make plans to follow the path that the author of the book travels. We may take our car if I can’t get past some of my fears, but we are going to look at motorcycles next weekend.
A movie, a book, inspiration, a dream, weaving our way through this world the best we can manage with our own challenges.
I may ride on the back of a motorcycle again one day, holding on to my husband, and following the roads mapped out in great books.
It’s romantic. It’s exciting. It’s a creative way to take an unusual vacation, especially for someone who loves books.
I must learn to step away from my computer, and look at the road ahead of me. Whether on my feet, in a car, or on a motorcycle, there are paths to take and things to see. I can’t let my illness keep me from the scenery of life. My doctor says if I stop trying out of fear, the less and less I will be able to do.
Right now, we are traveling on a motorcycle via the words written by a writer, but soon I may feel the wind on my face and the dampness of the air near the Pacific.
Dare to dream, I’ll meet you there.
I feel defeated.
Yesterday, I cried and begged my husband to drive us from Florida back to California.
I did not want to get on that plane.
The sad thing was that I knew my husband would have agreed to take a week off and drive us home if he didn’t have a deadline that he has been working toward and stressing over for months. He hates to see me struggle.
I took an extra dose of medicine.
I got on the plane. I made it to North Carolina, and I got on another plane.
I am back in California and I don’t intend to leave the ground for a while.
My husband told me he will take me on a vacation to San Francisco this month. Correction, my husband told me we he will drive me to San Francisco later this month.
Although, I wasn’t able to overcome my symptoms this time, I did learn something very important while traveling.
I can’t tolerate noise.
In the airport people were talking at all different levels. Some sounded like they were muffled like in another room, others sounded like they were screaming, and still others sounded like they were having a conversation close by me, because of course they were. All those voices created a very loud sound. I felt like the voices, because some were distinct and others were like whispers, that they were inside of my mind. It made me feel like I was hearing voices. It was a terrible sensation and I know that is what started my panic attack. I felt like I was hearing voices again, my voices, the ones I can’t trust to keep me safe, and the ones that mean I am psychotic, and need to get to a hospital or doctor.
I am alone five days a week. I sit in a room in complete silence and I write, read or I am on the Internet. I don’t listen to music. I don’t turn on the television. It is completely silent. That is my world the majority of the time, and that is the way I am comfortable.
I first realized that sound could cause a panic attack for me when I went out to lunch before a poetry workshop with two of my women friends. The restaurant was so loud we had to lean in deep to hear each other talk. After we left, and started to go to our workshop, I began to feel anxious. When we arrived at the workshop people were laughing and talking and my anxiety increased to a point that I couldn’t sit still. One of my friends went on a walk with me, and I told her if people would just be quiet I would be okay. I knew they weren’t going to be quiet though. My friend had to drive me home, I had to miss the workshop and take more medicine to calm down.
It was like that only worse in the airport.
Those voices, those hundreds of voices all sounded like they were inside of my head…whispers, shouts, conversations all competing for my attention. My anxiety soared because I could not block out the sound of those people talking. Of course I knew that the voices were coming from real people, not disembodied voices in my mind, but it didn’t help. My anxiety was too strong for me to overcome alone.
I’m sitting here, at my desk, in my chair, in my living room, and the only sound is the clicking of the keys on my keyboard and an occasional car that drives down the street outside. I may feel defeated, but I learned one more trigger that causes me to panic and that is a valuable tool to tuck inside my tool chest and to function in the world as a woman trying to beat schizophrenia.
I’m flying home today.
Earlier in the week I flew across the country with my husband on business, and I suffered from an anxiety attack that spanned about four hours on two separate planes.
It takes courage to go back to the airport and get in line, and sit in one of those tiny little seats next to strangers in a tube that flies through the air.
Courage is something people with a mental illness have a lot of. It is as if they have a well of courage that has to be tapped into daily in order to do the things that other people take for granted.
Some people fear leaving their homes so going to the mailbox is a huge accomplishment.
Some people have an eating disorder so consuming 1200 calories in a day is remarkable.
Some people suffer from depression so getting out of bed and taking a shower is progress.
Some people are manic so not getting irritated at their loved ones is prize worthy.
Some people are paranoid so trusting the mailperson or the cashier at the grocery store can be incredible.
Some people suffer from panic attacks and anxiety so many tasks or situations can take tremendous courage.
Some people hear voices that tell them their food is poisoned but they ignore the voices and eat anyway.
Going to the mailbox, getting out of bed, taking a shower, not screaming at your spouse or kids, getting dressed, or eating dinner. These things are probably something most people never think about, but when you have a mental illness these can be worse than a small obstacle to jump over, these can be thick walls that you hit your head on and can’t get past.
People who have a mental illness and try to function in jobs and relationships like everyone else must tap into that well of courage. They aren’t anything like the once cowardly lion in Wizard of Oz, they possess courage in abundance and must access it constantly, but there are no good witches or red ruby slippers to get them past their flying monkeys, their wicked witches, or their sleep causing poppies.
They have to make the choice to do it themselves.
And they do, more often than not, they do.
Here’s to all of those people who battle a mental illness! Here is to your courage, even if the world doesn’t see it, I do, and the depth of your courage makes you a real life hero. Remember that, and hold it in your heart and mind the next time everyday things try to conquer you – you’ve got this, you proved it hundreds of times before.
Make a door in that wall and pass through.