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Truth

03 Monday Sep 2018

Posted by A Journey With You in mental illness, schizophrenia, Uncategorized

≈ 2 Comments

Tags

brain disease, doctor, mental health, mental illness, mentally ill, routine, schizophrenia], travel, wellness

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.

Does it Scare You When I am Just Like You?

07 Saturday Apr 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized

≈ 19 Comments

Tags

brain health, courage, friends, hope, mental health, mental illness, mentally ill, schizophrenia], travel, wellness, women, writers, writing

Undeniably, there are times when I need special accommodations for my illness. There are times when I need people to be aware of the fact that I have schizophrenia and either help me out or give me the space to try and help myself. But there are those glorious times when I am not fragile, I am fierce and tough, and intelligent, and funny and I don’t need any special attention or care.

It is the space where I don’t need anything more than to be treated like any other human being that I live for and love. It is those people who treat me as if I belong, as if I’m not different, as if I won’t break or fall apart, or as if I am not fragile or needy or imperfect who makes me feel the healthiest, the happiest, the most energized, strong and capable. They help me in my healing and help me to become more and more of myself.

I have several people in my life who treat me this way both friends and family. I had an experience with a relatively new friend though, that was the epitome of empowering and normalizing and badassery.

I have a writing buddy who I have been talking to on Skype every Wednesday for months. We talk about our writing, share resources, occasionally read each other’s work, take classes together, and basically bolster each other up and along with our writing goals. She wanted to come out to California and see me. My husband was going to Miami to see his mother for a week, and he never leaves me alone.

My writing buddy, knowing about the fact that I have schizophrenia and that my husband doesn’t want to leave me alone for a week, offered to come and stay with me. She has never been to my house. We have never met in person. She planned on staying ten (which could have been long) days. And, the biggest part of this is my having schizophrenia didn’t scare her. Her coming across the country to stay with an almost stranger who she knows has schizophrenia is gutsy, brave, and speaks volumes about her as a person.

She obviously houses no stereotypes about my illness. She obviously expected things to go and be okay. She was not afraid; she was not reluctant. She just did it, and it was productive and fun. We were creative, talkative, ate good food, walked in the park, saw museums, and shared writing, writing, writing. We developed a morning routine together and worked well while we were both in the same room. We were two women together who love our art and are friends. We shared our passion, and we established our relationship.

I got to put my identities writer and friend before my identity as someone with schizophrenia. I got to be normal for ten days. I got to be a creative woman who loves words and can be a good friend.

I got to show someone my neighborhood, my home, myself and it went well, and I was well. And that is so much, so very much, it is a piece and a part of everything.

 

 

 

 

 

 

Public Service Announcement (PSA) About Medications During Holiday Travel

04 Monday Dec 2017

Posted by A Journey With You in bipolar, caregivers, mental illness, schizophrenia, Uncategorized

≈ 9 Comments

Tags

anxiety, autism, bipolar, disasters, emergencies, holiday, medication, mental health, mental illness, mentally ill, schizophrenia], travel, Treatment, trips

This blog post is a public service announcement (PSA).

I know that many of us with a mental illness or other disability don’t travel much because we can’t afford it, or because of all the details that go into it, or the fear of being far from our doctors, or a familiar pharmacy, etc. But we do travel, and this time of year more people are traveling than ever.

My husband’s father and his wife came to visit from overseas. They arrived on Friday night. So far we do not know where their luggage is. Thankfully, they put a week’s worth of medication in their carry-on, but they are staying for three months, and the remaining pills are in their checked bags. If you have an illness that requires you to take medications every day and you are traveling, never put your medication in your checked luggage. I always separate my medication into two groups. I put enough to get me through the vacation or trip in both places. I put one group in my purse and the other group in my carry-on. I always take twice as much medication as I need.

We took my in-laws to our pharmacy last night and asked what we needed to do to get them more medication if the airline is unable to locate their luggage. The pharmacist said that they couldn’t accept prescriptions from overseas so we will need to make an appointment and have my in-laws see a doctor here for new prescriptions. Obviously, this takes time, effort, and money. This is not what you want to be doing when you are far from home.

I know we will be able to take care of this situation for my in-laws (thank goodness), but not without stress, worries, etc. Also, it is possible we will need to go to a couple or a few doctors before one will prescribe medication to someone they don’t know. UGH.

Traveling can be a rewarding experience for anyone, but it can be particularly rewarding if you have a mental illness and you find your world is shrinking (my doctor has said this is what is happening to me – doing less, and less, taking fewer and fewer risks and trying fewer and fewer things). I need to take the opportunity to travel to open up my world, but there is a lot of planning that goes into taking a trip for me, and I can easily say that the handling of my medications is the top priority.

One last thing about this, if you live in a disaster zone, please keep an emergency kit by your door with at least a week’s worth of medication in it. I live in earthquake country, and I keep some cash, copies of my ID, and a week or more worth of medication in a bag in the hallway by the door.

Having a chronic illness of any kind takes so much work and care. It isn’t enough to simply get a diagnosis, take your medications, and visit your doctor every six months. There is a lot of work that goes into managing an illness, and I hope we can all be successful at it because our health and possibly our life depends on it.

The Time For Love Is Now

01 Monday Feb 2016

Posted by A Journey With You in Uncategorized, writing

≈ 11 Comments

Tags

Art, artist, essay, february, follow your dreams, hope, inspiration, love, lovers, relationships, travel, valentine's day, writer, writing

When my husband and I turned forty, we sold most of our possessions, bought a van and toured around the country. We went to thirty-eight states. One morning we woke up in a campground in Nashville Tennessee. The campground provided a pancake breakfast for a few dollars. My husband and I both get up early, so there were only a few other people in line when we arrived.

We got our pancakes and made our way to a table. There was a man by himself, and we asked if we could join him. He said yes.

“Good morning,” we all said to each other.

“Are you staying at the campground?” My husband asked?

“Yes.” The man replied.

He told us that his name was Bill, and like us, he was touring the United States. He said he was doing it for his late wife.

“We always planned to retire and tour the country together. She got cancer, though. I retired last year. I promised her I would make the trip. You two are smart to do this while you are young. You never know what will happen. There are no guarantees about tomorrow.”

My husband and I tried not to cry openly in front of Bill. We were glad to be together living a dream that we had given up everything to make come true. We knew we had done the right thing. Bill’s story proved it.

My husband and I have lots of plans for retirement. The truth is that both of us may not make it to that date. We have to live our lives here, and now. We have to find what we love and make it happen today, because like Bill said, “There are no guarantees about tomorrow.”

It is February, and it is considered the month of love.

I want to suggest seeking out not only who you love, but what you love – photography, painting, architecture, cooking, sculpture, music, acting, writing, poetry, computers, design, robots, gaming, golf, tennis, yoga, etc. and when you find what you love to make sure you do it every day.

We had a wind storm in Southern California yesterday, and a driver was killed by a tree that fell. Life can go out in a flash. Death can visit us at any time.

Tie your dreams up in love and begin to unravel them today. February is the best time to start because it is here and now and none of us should put off our heart for a day that may never come.

 

When Companies Get It Right

05 Saturday Dec 2015

Posted by A Journey With You in mental illness, schizophrenia, travel, Uncategorized

≈ 7 Comments

Tags

airlines, bipolar, customer service, depression, mental health, mental illness, mentally ill, schizophrenia, travel, traveling, trip, trips, writing

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.

 

Home Again

29 Sunday Nov 2015

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophrenia, Uncategorized, writing

≈ 16 Comments

Tags

bipolar, compassion, depression, happiness, hope, inspiration, life, mental health, mental illness, schizophrenia, self-confidence, travel, wellness, writing

We arrived home from Seattle after midnight last night. I spent four days with my dad in the small town where I grew up (Eastern Washington) and several days with two of my brothers.

It snowed one day. My husband raked leaves for the first time in his life (he has always lived in a condo or apartment and has never had a yard). I ate one of the best grilled cheese sandwiches I have ever had. I ate butternut squash ravioli that was one of the best things I have ever tasted. I went to a multimillion dollar Starbucks where you can watch them process the beans (if you are ever in Seattle, I suggest you stop at this Starbucks it is a little like the Wonka Factory).

I learned I have a lot in common with my brother and my dad in terms of my thoughts and behavior and neither one of them has schizophrenia.

I learned that schizophrenia has not stopped me from growing. I am not static in my life. I continue to change, grow and develop. This is a message of hope for all of us with a mental illness. We many have to deal with symptoms, but we can still nurture qualities like kindness, generosity, compassion, self-confidence, happiness, acceptance, tolerance, etc.

We can constantly become better people with or without a mental illness.

Seeing family was great. The food was great. Having a small dose of winter was great, but once again being reassured that this illness doesn’t have the best of me, was the biggest gift of all, because I can’t appreciate the small and large of things if I am consumed by my illness.

Once again, it is important to remember, I am not schizophrenia. Schizophrenia is just something I have.

I’ve come such a long way in the last few years. This is not an easy road to travel, this illness of the mind, but there is so much beauty along the way, it is possible to cast out the bumps, bruises, knee scrapes, head knocks, etc. and just see the wonder of living and that wonder can sustain and carry you when nothing else will.

Regaining Our Independence

24 Tuesday Nov 2015

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophrenia, travel, Uncategorized

≈ 10 Comments

Tags

bipolar, courage, depression, hope, independence, inspiration, mental health, mental illness, mentally ill, schizophrenia, travel, writing

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.

The Cost Of Terror

14 Saturday Nov 2015

Posted by A Journey With You in travel, writing

≈ 8 Comments

Tags

9/11, airlines, guns, paris, past, schizophrenia, shootings, terror, terrorism, terrorist, travel, vaction, violence, war, writing

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?

Language: Building Walls Or Building Bridges

02 Monday Nov 2015

Posted by A Journey With You in travel, writing

≈ 23 Comments

Tags

architects, architecture, blog, food, language, philosophy, speach, travel, traveling, travels, writers, writing

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.

Having Dreams and Having Schizophrenia

19 Monday Oct 2015

Posted by A Journey With You in hope, mental illness, schizophrenia, travel, writing

≈ 18 Comments

Tags

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.

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