I’m Not an Interior Designer

I’m not an interior designer, but I play one on my phone. The game—Design Home. The object—to decorate a room with required elements to win prizes like money and diamonds, both of which can be used to purchase furniture and accessories for your room. Each day brings multiple, changing challenges: an industrial-style living room for an engineer in Krakow, Poland; a modern dining room for this new, critically-acclaimed chef in Moscow, Russia; a luxe bedroom for a tennis athlete relaxing in style after a match in Wimbledon, London. It’s a guilty pleasure. If only designing real homes could be that clean and easy, you know, with prizes involved and all.

Two weeks ago after ten months of flood displacement, we were given the okay to move back into the still incomplete but livable house. We had then and still have one completed bathroom, just missing a vanity mirror, which we have—outside—in the POD—in our driveway.

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The POD has been a sore spot for the past ten months. Our contractor had some of his guys load it, and my husband had specifically asked to be there to supervise. Instead they moved everything without a heads up. Kody had specifically asked that our wardrobe boxes be loaded last, so we could access our winter clothes. Instead the wardrobe boxes went in first, and last, barricading what I could unload myself and what I need now, is an extra refrigerator and a large garage shelving unit. Back in October, our contractor offered to have everything moved out and back in for us, but moving everything two more times than necessary screamed trouble to me, so I just shook my head and played Design Home.

At the moment, silverware and pots and pans—inaccessible in the POD—would be useful. And our newly installed lower kitchen cabinets wait for cabinet pulls—the ones we saved from the moldy cabinets that we dumped on the curb—the ones that must be in the POD. And speaking of kitchen problems, some of the white subway backsplash tiles had to be replaced, and just when I thought the kitchen was practically complete, I discovered that the newly installed wavy tiles did not match the original flat tiles. So now we have more demolition and more tiling and more construction dust everywhere, in the garage, on the street, not to mention in the unfinished kitchen, in the incomplete master bathroom, and on the souls of our shoes. First world problems, right?

So I could go on complaining, but what good does that do? I could also move forward in gratitude. I realize I have a choice, and so I will try. After the thumbs-up on the move-in, I drove to Dallas on a Tuesday and helped our daughter Lauren pack. Turns out she has missed us since our move south two summers ago, a mutual feeling. Even at age 26 1/2 , she will always be our baby girl, and we want her near. Kody joined us in Dallas that Thursday, we picked up a U-Haul on Friday, and the three of us loaded the truck bound for Houston. In return Lauren has been my super helpful sidekick, assisting me with the minutiae of moving and decision making, not to mention the building of some IKEA furniture as we refurnish our house from scratch. Lauren will live with us temporarily while adjusting to her new life in a new city, and having her here makes our house seem like home. For my family, I am MOST thankful.

After the final furniture delivery last Monday, we packed my Mazda once more and drove far, far away to the Oklahoma Panhandle for the fourth of July with family…

and then on to the mountains and the cool, clean air of New Mexico with my sister and brother and other brothers.

My nostalgia for these places and my people runs deep, the peaceful skies unforgettable. Where I grew up in Oklahoma, the waving fields of wheat and corn kiss the endless cornflower blue. Where I snow skied all my life in New Mexico, a gazillion stars sprinkle the midnight navy. Especially in these places, I realize the world is larger than one life, and I know there is a God who designed this home for us all.

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Ode to the La Quinta

Ten months ago on the 27th,  I felt as if the sky was torn off my life. In short, Hurricane Harvey had flooded my home. My family and our dog Rain evacuated along with our neighbors and their dogs in the rain. Houston fire fighters rescued us in a flat-bed city dump-truck and then dumped us in a dry parking garage. From there we sloshed on foot a little over a mile to a pet-friendly La Quinta, a safe haven in the face of crisis, where we’ve lived ever since. (More details @ That Time When I Met Harvey)

The Flood

The people here have been so kind. My La Quinta family—Raven and Shanta and Amber and Chad—all from the front desk. They’ve been there on good days and bad days. They’ve witnessed us at our best and worst. Raven was here on day one. She had answered the phone when Kody called from the parking garage to make our reservation and allowed us an early 9 AM check-in. That same day she loaned us her personal umbrella to run across the street in more rain to the Hilton for lunch. And whenever Raven works, she recognizes the click of Rain’s nails on the tile, and she always says, “Hello, Rain, I heard you coming!” A friend of Rain’s is a friend of mine. Shanta, the general manager, was the first to welcome me into the hotel laundry room for our personal needs. She was there for the excitement of an upcoming interview, she was there for the disappointment of a terrible previously mentioned interview, and she offered me a job at the La Quinta as a consolation. I just might take her up on that, and if not, I can totally see myself dropping by just to visit these people whom I will miss. Then there’s Amber, who works the night shift and goes from here to her other job at a memory care facility or vice versa. We had some good heart-to-hearts…about my mom…about Drew. Throughout this past school year, I left the hotel each morning between 6:15 and 6:30. Amber was always there to tell me to “Have a good one!” And Chad, well, he’s most often here in the evening, and Kody and I tend to have adult beverages in the evening, and sometimes Kody raps in the evening, and Chad, well, he gets it. He’s entertained. He’s a nice audience. I have another friend named Joanna, also displaced from the storm that displaced so many, living here since November with her kids Bella (11) and Bun (9, given name Toby) and their dog Storm. Bun loves Rain, too, and the irony of our dogs and their names does not escape me. Recently Joanna and I had a conversation about our time here winding down. “Everyone here has been sooo nice to us,” she said. “When we leave, it will be bittersweet.” Her words echo my thoughts.

Don’t get me wrong. Of course, I’m excited to move back home, and it’s finally, ten months later, happening. As I recline on my last night here, propped up on pillows, in my bed with clean sheets, I feel there’s something to be said about good people who care. There’s a special place in heaven…

Good People

 

There’s a Fungus Among Us

For nearly a year I’ve consumed a plant-based diet. Yes, I cheat from time to time, usually with fish. Kody and I did split a Sweet and Spicy Bacon Burger from Whataburger not long ago. I have no regrets. We used to eat that way all the time. Without the split.

Last week I indulged with a Frito pie at Local Foods here in Houston. Topped with cashew queso, a soy protein, the most beautiful tomatoes, fresh red onion and jalapeño and cilantro and a little hot sauce, it was soooo good. I’m confident I can make a similar pie myself when we move back home soon.   

Frito pie

And this Hopdoddy Impossible burger is in the weekly rotation. Hold the cheese, please. The meat-free patty, developed by former Stanford biochemist Patrick Brown and a team of researchers at Impossible Foods, is made entirely of plant-based ingredients. Potato protein allows the exterior to sear, and coconut oil melts like beef fat. However, heme is the magic. This legume-derived, iron-containing molecule also found in blood, gives the “meat” its texture, smell, and a pinkish interior.   

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I used to have a cholesterol problem, but plants don’t have cholesterol. Problem solved, medication and cardiologist no longer needed. Anyway speaking of doctors, I’m reminded of my fungus. Seriously, it’s on my right foot—uncomfortable and ugly, itchy and flaky. I thought maybe it was eczema and tried to treat it myself like I did the cholesterol. I’m embarrassed to say how long I self-medicated, just hoping it would go away (for years) before realizing that I needed professional help, and then even knowing I needed to see a doctor, how much longer it took me to make an appointment (another year or so).  

I searched my insurance company’s website for a dermatologist for the first time ever, and within a day I had an appointment and saw the doctor who diagnosed the fungus and prescribed me some cream. In my head I had exaggerated the difficulty of seeking treatment. From beginning to end, the process was painless, which is more than I can say for my foot. The doctor, who specializes in skin conditions, was compassionate and kind. 

A long-time good friend of mine recently reached out via text to tell me about a silent health struggle: “I am seeing a [insert type of doctor here] for more tests…All I know is that the pain has been almost intolerable and I need an answer and some relief. I didn’t want to say anything because it sounds like I’m complaining, but it’s time I let you know that something isn’t right and I’m trying to get answers.” 

sometimes-all-you-need-is-for-someone-just-to-be-11933760 With my mind on my fungus and my fungus on my mind, I continue to think about health in general and suffering people and reasons why a person might choose to delay the help they need and challenges for those pursuing relief. Like other illnesses, fungus does not discriminate, and our medical problems, like a fungus when ignored or denied, grow and fester. I’m thankful to live in an age of medical access, and I’m thankful for friends and family who have listened to me when I needed to talk about my fungus.  And that’s really what life is all about, right? Friends and family and being there.

Impossible Burger sources:

http://www.nydailynews.com/life-style/eats/meet-meatless-impossible-burger-veggie-burger-bleeds-article-1.2727141

https://www.npr.org/sections/thesalt/2016/06/21/482322571/silicon-valley-s-bloody-plant-burger-smells-tastes-and-sizzles-like-meat

Mental Health, Being Aware: An Update and a Prayer

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Family and friends often ask, “How’s Drew?”

I wish I could say, “Phenomenal.” In reality, he’s okay.

In 2015, we faced Hospitalization #5, and I pulled the you-can-no-longer-live-at-home-unless-you-take-medicine card. Drew now accepts that he hears voices, and I accompany him to monthly appointments with his psychiatrist for an extended-release, anti-psychotic injection. It’s not perfect, but it helps. Like clockwork the auditory hallucinations become increasingly loud and mean about a week before his shot, and they stick around for about a week afterwards. The voices within taunt Drew. They yell at him. They cuss at him. Drew responds. He taunts, yells, and cusses right back. I’ve learned not to take the outbursts personally, but I can’t shake that sensation of pressure on my breastbone and the deep piercing of my heart, so I pray—for his peace and mine and Kody’s and our dog Rain, who hides under the bed. Two good weeks. Two restless weeks. At least I don’t have to oversee the daily swallowing of a pill or worry about him cheeking it and spitting it out.

His psychiatrist, Dr. Lee, invites me in to their monthly appointment, and after chatting about music for a while, he says things like this, “Are you having any anxiety?”

Drew responds, “No.”

“Any crying spells?”

“No.”

“Any paranoia?”

“No.”

“Do you hear any voices?

“Yeah. Sometimes.”

“But, do you feel you can manage them?”

“Yes.”

“Good. That’s good,” Dr. Lee says before wrapping up the session. “You know, Andrew, I think you are doing really well, and ten years from now, I think you’ll be doing even better. Medicines are improving. They are always researching. Who knows? You go to sleep one night, and you wake up the next morning to a cure.”

I’m thankful for this doctor. I’m thankful for our current medication that has kept us from the inside of a hospital for the past three years. I’m thankful for resources at my fingertips at the click of a button. I’m thankful for a God who keeps my perspective in check and gives me hope.

This May (Mental Health Awareness Month), I found the prayer below on another mom/mental health advocate’s Facebook page. The original author is unknown, and I searched unsuccessfully to locate the source. However, I found it posted on schizophrenia.com as early as October 2004 again on Nouwen-network.com, an Australian site solely for resources on the theme of mental illness, ministry, prayer, and spirituality. I’ve been this mom, if not all at once, at least at times along the way, and so I pass her prayer to others needing the words—to others needing hope.

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A Mother’s Prayer for Mental Illness

As I stumble from my bed this morning, help me to remember to be gentle and kind.
My child’s mind is shredding into a million pieces. He lives in a constant state of atrocious fear. I can see it in his eyes. Give him peace.

Guide me as I hold him in my arms. Help me to know what to say. What to do. Fill my heart with healing love, understanding, and empathy.

Give me the strength of a thousand angels to hold back my tears. My heart is broken and a tidal wave of grief is overwhelming me with the need to cry. Give me the strength to bear it long enough to keep it from disturbing my child. Help me find someone I can safely bring it to.

Help me answer my family’s questions with the same amount of compassion I would want for myself. Help me remember they are hurting too. This is an unwelcomed assault on an entire family. My heart is not the only heart that is broken. We all need time and each other to heal.

As my journey becomes more and more isolative and lonely, remind me that the lack of involvement on the part of family and friends is not always because of the stigma and the ignorance. For many, it is because they are hurting too. They have the privilege of turning to their own lives. This is my family’s life now. I must deal with it whether I am hurting or not.

Send me your best physicians and healers. Give me presence of mind, as I walk through the exhaustion of my grief to not settle for just any one no matter how tiresome the journey becomes.

Help me adjust to the idea, that although it appears my son is gone, there will be no goodbye. And that he is still inside somewhere waiting for us to find him.

Infuse the creative part of my mind with solution oriented thinking. Give me hope. Even if it is just a glimmer of hope. A mother can go for miles on just one tiny glimmer. Let me see just a flicker of the sparkle of joy in his eyes.

Guide my hands, calm my mind, as I fill out the multitude of forms for services. Then help me do it again over and over.

Provide me with the knowledge. Lead me to the books I need to read, the organizations I need to connect with. As you work though the people in my life, help me to recognize those that are here to help. Help me trust the right ones. Shine a light upon the right path.

Give me the courage to speak my truth; to know my son’s truth. And to speak for him when he is unable to do it for himself. Show me when to do for him what he is not capable of doing for himself. Help me to recognize the difference.

Help me to stand tall in the face of the stigma; to battle the discrimination with the mighty sword of a spiritual warrior. And to deflect the sting of blame and faultfinding from the ignorant and the cruel.

Preserve my love for my family. Shield my marriage with the wisdom of the love that brought us together.

Protect him from homelessness, loneliness, victimization, poverty, hunger, hopelessness, relapse, drugs, alcohol, suicide, cruelty and obscurity.

Lead us to the miracles of better medications, better funding, better services, safe and plentiful housing, meaningful employment, communities who care, enlightenment. Help us to find some way to replace all the greed with humanitarian work and intrinsic reward again.

Most of all, give me the strength to deliver whatever I can to the work of unmasking the man made ugliness of this disease and revealing the human and all of it’s suffering beneath.

Finally, when it is my time to leave my son behind, send a thousand angels to take my place.

*****

Can I get an amen? Thank you for reading today and especially during the month of May. Thank you for taking time to try to understand the brain as a vital, potentially malfunctioning organ. And most of all thank you for your prayers and support for Drew and others with schizophrenia, 1.1% of the population, roughly 51 million worldwide.

Hope Jeremiah

Mental Health Recovery : A Marathon Not a Sprint

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When I compare each year to the previous one, I measure our progress and remind myself that the road to recovery is a marathon not a sprint. After three months of three separate hospitalizations from the fall of 2010 through the spring of 2011, Drew continued to deny his diagnosis and refuse medication. For about three years, we spun our wheels, going nowhere fast, and our family bus broke down. In the summer of 2014, Drew agreed, as a condition for continuing to live at home, to see a psychologist weekly. In the fall of 2014, with some arm twisting of another kind, Kody accompanied me to the 12-week NAMI Family-to-Family class. By January of 2015 with encouragement from his psychologist Dr. Hanna (which I may or may not have instigated), Drew started a NAMI class of his own, 10-weeks, Peer-to-Peer. The wheels on the bus went round and round and forward once more.

Each Tuesday night, I drove Drew to his class held at a hospital about fifteen miles from home. He attended. I waited. I always had papers to grade or books to read, and I tried my best to converse with Drew during the drive time. Receiving a weekly e-mail reminder about the class, I had anticipated the class when the attendees would tell their stories. I wondered how Drew would describe the last few years of his life, especially as I consider my own version. I wish I could accurately convey Drew’s perspective, but I can only give you mine: a story of a mother’s heartbreak and hope in the face of mental illness, my story of helping Drew navigate the rocky road to recovery and trusting that the pavement will smooth out ahead. It hasn’t been easy for any of us, but Drew NEVER talks about it, living an isolated, non-communicative existence in his bedroom day after day, leaving mainly to eat and smoke. No one would choose a life like that.

Our daughter Lauren, away at college, said, “Drew is just being a brat. He could work if he wanted.” She missed the Family-to-Family class, but even Kody, who attended, thinks Drew can do much more, too. It’s not that I don’t think Drew can do more, but making him do more is a full-time job, and I work full-time already.

While going to my own NAMI class, one of the teachers e-mailed a CNN video link of Anderson Cooper taking part in a schizophrenia simulation experiment. He wore headphones to simulate hearing voices while going on with his day.  Please click the link for a better understanding: http://ac360.blogs.cnn.com/2014/06/09/anderson-takes-part-in-an-experiment-to-help-understand-how-people-live-with-mental-illness/  Uncomfortable, right? I can’t imagine not being able to shut the voices up.

I cling to the hope that through the doctor and the classes and forward momentum that Drew will gain insight on brain disorders and that he will come to an acceptance of his “new normal” and that he will seek further help and that he will someday contribute to society and that maybe one day he will enjoy and maintain relationships once more. These are the things that I wanted to say to Drew during our car rides to and from Presbyterian Hospital in Dallas for his Tuesday night classes. After the Tell-Your-Story class, I said, “I saw the e-mail that said you all would be sharing your stories tonight. How did it go?”

“I just listened.” And that was that. Our conversation usually consisted of Drew asking, “Will you turn up the volume?” And when I did, he would usually say, “Not that loud. Turn it down.” Pause. “A bit,” followed by a “Thanks for driving, Mom.”

And after class, I would usually ask, “Are you hungry?”

And he would say, “I could go for some burgers.” And we would drive through McDonalds, and he would say, “Thank you. I love you, Mom.” And I appreciate that. I really do. I just want so much more for him.

One night after class, Drew approached the car and asked if we could give Rachel a ride to Rowlett, a Dallas suburb, not exactly on the way home, probably forty-five minutes to an hour out of the way. As much as I didn’t see Rachel’s transportation situation as my problem, Drew wanted to help out his new friend, and I want Drew to have friends, so at the end of an already long day, I consented.

Rachel talked up a storm, but I welcomed the break to the typical silence. She told me about her family, her high-school experience, her church, her job. I wondered about her diagnosis, not that it matters. Her cheery, chatty demeanor just differed so dramatically from Drew’s. On the way toward Rachel’s house, her mom called to say she could meet us at Collin Creek Mall, which would just be a stop on our usual way home. Around 9:30, we pulled into the empty JCPenney’s parking lot about five minutes ahead of Rachel’s mom.

Drew said, “Will you pop the trunk?” and opened the car door to exit without waiting for a response. I popped the trunk, and he grabbed his backpack, the one banished from inside my car due to the odoriferous glass water pipe inside. He loaded his organic Natural American Spirit tobacco and smoked in the darkness.

Alone with Rachel, I took my opportunity to ask, “So Rachel, does Drew talk much during class?”

“No, he’s pretty quiet and doesn’t say a lot.” She paused, “He doesn’t laugh at the same things that the rest of us do.”

His affect is off, the neuro-psychiatrist’s words echoed in my thoughts. “Hmm, I just wondered because when I ask him about class, he doesn’t tell me much either.” I hesitated, “He doesn’t really believe he has an illness, so he refuses to take medicine even though he has been hospitalized a few times.”

“Maybe he hasn’t found the right one.”

“Yeah, he has tried quite a few, and he was doing really well on one, but he said he had a seizure, so he quit taking it. A doctor told me he didn’t think Drew would know he had had a seizure, so we don’t know for sure, but now Drew believes that the medicine is poison.”

I felt myself overstepping my bounds. After all, I had just met Rachel. I didn’t really know much about her relationship with Drew other than he had gone to dinner at her house once.  I wasn’t sure if she might say anything to Drew about this conversation, and I didn’t want to make him mad, a motif in our lives.  Then she asked, “What was the medicine?”

I had to think. The “seizure” had been four years earlier, and while I tried to remember the name of the medication, Rachel said, “I think Andrew has some anger issues.”

That’s interesting, I thought, wondering how his anger had manifested itself in front of Rachel.  “Yes, I think you are right.  He does see a therapist,” I said, and we sat in silence for a moment, my mind racing. Do Dr. Hanna and Drew discuss his anger?  I silently cursed HIPAA. I should call Dr. Hanna and mention the hole Drew punched in his bedroom wall and the one in our kitchen pantry door and the yelling that sometimes occurs behind the closed door of his bedroom.  Even though Dr. Hanna can’t discuss Drew with me, he’ll listen. He always doesAbilify. I had remembered the medication.  “Abilify.  That’s the one that made the biggest difference.”

“Oh,” Rachel said as if she didn’t have any personal experience with Abilify. She went on to tell me about her medicine and how it worked and how her “commanding voices” had gone away.  “To be honest, I kind of miss my angel a little bit. Just the parts where he would touch me gently and kiss me on the forehead and things like that—the nice parts, not the horrible chains and fire and things like that.”

“Right?” That was my mono-syllabic, nonsensical response cut short as headlights flashed in my rear view mirror, and Drew opened the car door, rejoining us.

Rachel’s mom had arrived, and Rachel said, “Thanks so much for the ride. Nice to meet you, Mrs. Byers. See you next week, Andrew.”

Alone with Drew again, I said, “I like Rachel.”

He responded with silence. I waited.

“She likes to talk.” There was another pregnant pause. “Are you hungry?”

“Yeah, I could go for some burgers.”

marathon not a sprint

How NAMI Saved My Marriage

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I admit without shame that I manipulated Kody into coming with me to a twelve-week, two-and-a-half hour Wednesday night Family-to-Family NAMI class, an education program for family members of adults living with mental illness. After four years of dysfunctional family interactions and an escalation of discordance at home, I started attending a National Alliance on Mental Illness support group, where people strongly encouraged me to attend what they called a “life-changing” class.  In my area, the class is only offered twice a year, and I needed immediate change, so I called to reserve my spot, explaining, “I’m hoping to bring my husband, but I’m not sure he will commit to twelve weeks.”

On the other end of the line, Mary, replied somewhat-conspiratorially, “Just bring him to the first class. You will share materials, and hopefully, he will keep coming.”

After registering, I text-messaged Kody’s cousin Misti, who lives in the metroplex. Recently, she had come to a jewelry party at my house that I co-hosted with Kody’s younger sister Gianna, the accessory queen and party planner, visiting us from Oklahoma. Drew stayed in his room throughout the event, and once everyone else had gone home, Misti asked, “How’s Drew?”

“Well, he’s in his room. About four years ago, he was diagnosed with paranoid schizophrenia, so he avoids people. He doesn’t believe that he is sick, so he won’t take medicine, and we’re trying to figure out how to help him.”

“Really?” she said wide-eyed and shaking her head back and forth with an understood No. “I’ve never known anyone that’s happened to, but…” I censor this conversation because Kody’s cousin has an intimate relationship with someone hospitalized at that precise moment with a similar condition, and her story isn’t mine to tell. When I sent Misti information about the class, she texted back, “Thank you. Thank you. I’ll be there.”

I roped Kody into coming with me to the twelve-week NAMI Family-to Family class by saying, “Your cousin is coming. Just come to the first meeting, and if you decide not to come back after that, the registration lady told me it was okay.”  Meanwhile and in my defense, I forwarded Kody information via e-mail about the class, including location, times, and dates.  I guess he never read through that message because during the week-one class when he discovered the length of his captivity—from 6:30 until 9:00 that night, his blood seemed to boil beneath his skin. At any moment steam might’ve erupted from his ears and nostrils as Tom and Linda, our facilitators, began a hard-sell on the twelve-week commitment. By the way, Misti no-showed.

That first night included self-introductions, brief descriptions of our loved ones and identification of long-term goals. Tom created a T-chart on the dry erase board and said, “In the long term, is your goal for your loved one independence or functional dependence?”

When my turn came, I had two minutes to introduce myself and tell the story of Drew leaving for college on a full music scholarship and returning saying, “Something is wrong with my brain.” The story included a handful of hospitalizations and non-compliance with meds and not being able to keep a job and communication difficulties.  I concluded with, “I want Drew to be independent.”   Much of our recent household drama included heated words of Drew being twenty-four, needing to work, needing to contribute, needing to move out. Drew’s non-response was an issue. From the time my kids were young, I never considered any other option for them besides independence. I wanted nothing more than for Drew to have his own life and relationships and happiness beyond his bedroom walls, the walls that confined him most of the time.

Kody spoke next, exceeding his two minutes, explaining in more detail the difficulty and discomfort of living in his own home. His conclusion, however, shocked me: “Functional dependence.” During the previous year or so, Kody and I battled as foes concerning Drew and his illness and his capabilities. My Momma Bear instinct protected Drew and sided with him and made him sandwiches and did his laundry, to the detriment of my marriage. Together the three of us were the epitome of the dysfunctional family, and I had never considered the possibility of “functional dependence.” Already this class had changed my life.

The next week Kody met me once more at the church that held the class. An air of underlying hostility accompanied him. He skipped Week Three due to “work” but dragged himself back for the remainder of the twelve-week course. Together our perspectives shifted as we studied and discussed in a group setting the following topics:

Class 1: Emotional reactions to mental illness and goals

Class 2: Understanding schizophrenia and mood episodes, coping, and keeping files

Class 3: Types and sub-types of mood disorders

Class 4: About the brain

Class 5: Problem solving and setting limits

Class 6: Medication and treatment issues

Class 7: Understanding the patient

Class 8: Communication

Class 9: Self-Care

Class 10: Recovery

Class 11: Advocacy

Class 12: Certification Party

Before the NAMI class, I thought I knew practically everything I needed to know about mental illness. In four years, I had researched and read a handful of books and many-an-article. I watched Ted Talks and YouTube videos.  Not to mention, I lived with Drew.  However, the first six classes provided a plethora of new information, and the last six classes addressed the emotional side for patients and their families. In four years, I hadn’t considered how Drew might be feeling day in and day out, and this perspective changed my life.

Over the three-month period, I encountered complications as usual in speaking openly about Drew’s illness without my throat splotching red or my eyes swimming, Kody’s contributions became less angry, and together we learned more about Drew, biological brain disorders, and empathy. Each Wednesday night after class, we stopped for sushi and sake bombs and decompression, reflecting about the topics of the evening. Kody became my friend once more, and I cherish the memories of those Wednesday night dates.

Toward the end of the twelve-week program, another mom in the class approached me during a break and said, “It’s been really great to watch your husband’s transformation.” She leaned in and continued, “I know you had to trick him into coming.”  Almost four years after Drew’s schizophrenia diagnosis, a miraculous and radical change had occurred in our ability to cope with the illness and communicate with our son, and we owe that to NAMI.

General Mental Health Facts

Mental Health Awareness

Mental Health Awareness: A Journey Towards Help, Hope, and Understanding

In recent years I’ve claimed to be a mental health advocate…except that I’ve skirted the details of my story, which is like a raw wound, easily agitated and painful. May is Mental Health Month, AKA Mental Health Awareness Month, and so I remember another May day, eight years ago, and the beginning of our journey towards help, hope, and understanding.

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My cell phone vibrated, and I glanced down.  The text message popping up from my son Drew said, “There’s something wrong with my brain.”

I don’t remember my response to the text I will never forget.  One, I had stopped for happy hour with my husband Kody after work; two, this happened a couple of cell phones ago, the text thread long gone.  I can only imagine that I probably replied along the lines of—Let’s talk. I’ll be home after awhile.  

Kody and I didn’t rush home with concern.  We arrived home later that evening to find Drew sealed away behind his closed bedroom door, lights off, as if to say, “I don’t want to talk about it.”  The discussion waited as did we.

The next morning, I suggested breakfast out.  Kody, Drew, and I drove to a neighborhood diner.  Amid the cadence of background conversations, the clinks of silverware to plate contact, and the aroma of good coffee, we sat in awkward silence while waiting for food and Drew to provide extra details. The sunlight streamed through the blinds of the windows as breakfast arrived, and Kody said, “Son, we wanted to talk with you.  What’s going on?”

Drew’s eyes narrowed as he stabbed his omelet, “Don’t you think there is something wrong with me?  You don’t remember the time I ran into the fence?  You don’t remember that big lump on my head?”  I didn’t remember the fence incident, and neither did Kody.  Drew’s tone implied we were idiots for forgetting, and he told his story as if he had said these words a million times.  “I stole some beer at Walmart, and someone caught me.  So I dropped the beer and ran out of the store as fast as I could.  I ran full-speed, head-first into a fence.  Full speed.  I had a huge lump.”  He touched the right side of his fore head with five fingertips, indicating the location and size of the injury.  “You don’t remember?”

The beer theft/head injury had occurred two years earlier, Drew’s senior year of high school.  I tried to visualize the episode.  There are no fences directly outside of our neighborhood Walmart, so I couldn’t picture him running full speed into a fence.  If he had escaped through the front door, he would have had to run a considerable distance before encountering the said fence. My thoughts raced faster than I could ever recall Drew running.  How could anyone run full speed and oblivious of an oncoming fence?  I didn’t remember the big lump, but that was during a time when I didn’t see much of Drew. Possibly the lump was bigger in Drew’s mind and I had overlooked a smaller lump, or maybe my memory just fails.  I searched my now-guilt-ridden brain, recollecting an enormous lump during sixth grade from a no-helmets-football-game-gone-wrong with the neighbors across the street.  Then my thoughts returned to Drew’s first question, ‘Don’t you think something is wrong with me?’

Deep down, yes. I knew.  Something wasn’t quite right.  Long ago I stuffed the notion down and out of sight. Now Drew knew, even though he wouldn’t elaborate. In Drew’s mind, his two-year-old head injury lingered, and time called for a doctor.

At home for the summer, Drew had spent the past year at West Texas A and M, where he had auditioned for the orchestra, received a full ride as a music major, and studied cello performance. He scored high enough on the English CLEP (College Level Examination Program) to receive credit, his SAT scores rated high enough to waive his college math class, yet he struggled academically.  Whenever I called, he always answered his phone, alone in his dorm room, our conversations, always brief.  I convinced myself that my Drew was an artist, just a little different, the social withdrawal a phase. Maybe drugs were to blame, or possibly he had ADD. However, Drew adamantly believed that he suffered from brain damage.  I could count the number of times he had seen a doctor on one hand, and I could not recall him requesting to see a doctor ever, until that morning.

So began our journey of finding a doctor to identify the problem that Drew had trouble explaining.  Our family doctor, Dr. Terrazas, spoke with Drew and me for approximately fifteen minutes before diagnosing him as bi-polar and writing him a prescription for Lithium.  I wondered if I had led her to that conclusion, and Drew, not satisfied with her conclusion, wanted further testing.  Dr. Terrazas referred us to a neurologist, Dr. Grider, who ordered a CAT (computerized axial tomography) scan.  Weeks later at the follow-up appointment, the images of Drew’s brain revealed no damage, and the neurologist had no answers.  Drew doubted both the bi-polar diagnosis as well as the CAT scan results and pressed forward for further testing.  The neurologist referred us to a neuro-psychiatrist, a Dr. Affatati. The appointment, another month away.

Meanwhile, I furtively observed my son, who confined himself to his room and never spoke on the phone or went out with friends.  He lacked emotion but laughed now and then for no reason at all.  When I attempted a conversation, the dialogue fell flat.  When Drew began the conversation, the topics loomed beyond my comprehension.  He sometimes nodded off in an upright position.  Sometimes his face twitched, his eyes or his mouth, involuntarily.  Drew walked in circles and stretched in repetitive patterns.  My son had changed before my eyes, yet the quirks had become abruptly apparent.

To break his habit of isolation, Drew and I drove to the Oklahoma panhandle to stay with my parents for a week. After a one-on-one day of golf with his Pop, I remember my dad saying, “Crystal, I think it’s a self-esteem problem.”  My dad’s words didn’t settle well, and all that time grew my fear, the unspeakable certainty of something much bigger.  The appointment with the neuro-psychiatrist was still a week away.

On the drive home, we made a quick stop in Canyon, Texas at the university for Drew to check his mail.  Drew had been home since May, and he insisted on checking his mail in July, looking for a package of sheet music that I had sent in February. At the time, this did not register as odd. A grandmotherly lady with horn-rimmed glasses and gray hairs pulled back into a bun at the university post office kindly checked and double checked for the package. “I’m sorry there is nothing here for you.”

Drew maintained composure, but upon exiting the building an air of agitation enveloped him. “That lady was racist,” he said.

“I don’t think so,” I replied having no clue why he would say that. “How was she racist?”

“She discriminated against me.” I heard the edge in his voice through gritted teeth, followed by a deep exhale.  “Can I drive?”

I collected my calm and said, “Of course,” hoping a drive on the open road would distract Drew from the dark cloud overshadowing his mood.

The highway home stretched and yawned for three hundred and seventy-six miles as my mild-mannered, soft-spoken son transformed into a bizarre, frantic person behind the wheel.  “Are you racist?” He asked, more accusation than question, his sideways glance revealed suspicion.

Anyone who knows me would think the question strange.  I teach high school English at a diverse suburban school, and I love my students.  I breathed in. I exhaled. I shook my head back and forth. “No, I’m not racist, Drew.”

He raged from one accusation to the next, as if someone held the remote, flipping channels.  “Read your wrung.  What does that mean?  We sped down the highway.

“What?” I thought I had misheard him.

“Read. Your. Wrung.”  Drew slowed the statement, but not the car.  “That’s what you said to Mimi.  She’s a witch.  You’re both witches.”

I braced myself in my seat, knowing without doubt that we had a major problem—not brain damage—a psychological, perhaps psychiatric problem. I didn’t know the difference. He had heard me cast a spell? “No, Drew, we are not witches.”

For six solid hours, Drew expressed suspicions, delusions, and perplexingly incomprehensible thoughts. In my head, we veered full speed into oncoming traffic. I wanted to text my husband, but there was nothing he could do and no textable explanation.  I did not in any way want to heighten Drew’s hysterics.   So, for six solid hours, I prayed to God for our peace, our safety, and our lives.

Once home, Drew retreated to his bedroom, and I pulled Kody into ours and attempted a condensed version of events in hushed tones. None of it made any sense. Explanations failed.  I remember Kody saying, “What the fuck is this shit he is pulling?”  How could I make him understand when I couldn’t even understand?  I sobbed into my wet pillow that night.

The sun rose to a new day, a Sunday.  I felt God’s pull, and I knew that someone at church would pray with me for my family.  Kody held fast to the I’m going to get this thing taken care of mentality, and he confronted Drew head on, “What is your problem?  Why are you doing this to Mom?”  I heard their voices in the living room from my location in the master bathroom.  Kody didn’t understand.  Drew’s behavior wasn’t calculated or malicious.

I eavesdropped from the hallway before entering the living room, where I witnessed the Kody-Drew face-off.  Drew spoke of a grocery cart.  I walked in mid-explanation.  He was either pushing the cart or sitting in it while someone pushed—in the cafeteria while away at school, “People were lined up on both sides of me cheering and screaming,” he said with the same panicky road-trip tone from the day before, stressing the words cheering and screaming. Disconnected thoughts spewed forth, “And when I watch TV, let’s say, I’ve just been reading about comets, then there is something on TV about comets.  It’s like the TV is communicating with me.”  Kody’s eyes flashed at me with a dawning realization.  Reality had slipped from Drew’s grasp like sand.

I left the scene, Kody and his helplessness seared in my mind, father and son alone at an impasse, tears dropping single file into my lap as I drove to Chase Oaks Church.  I entered the building, hiding behind my glasses, hoping to blend into the crowd without anyone noticing the puffed anguish around my eyes. I located a seat amid singing voices while the band played, and when I opened my mouth to sing, the floodgates gave way once more, the torrent of tears, a mix of sadness and fear.  Then came the song I needed to hear.

Everyone needs compassion,

Love that’s never failing;

Let mercy fall on me.

Everyone needs forgiveness,

The kindness of a Saviour;

The Hope of nations.

Saviour, He can move the mountains,

My God is Mighty to save,

He is Mighty to save.

Forever, Author of salvation,

He rose and conquered the grave,

Jesus conquered the grave.

So take me as You find me,

All my fears and failures,

Fill my life again.

I give my life to follow

Everything I believe in,

Now I surrender.

I don’t remember the sermon that morning, but I heard God’s message in the music. God will take my fears, and with Him, there’s hope. Everyone needs compassion. Drew. Kody. Me. Our daughter Lauren, our recent high school graduate dealing with problems of her own and oblivious to Drew’s latest development.

The service concluded with the usual announcement: “Each week we have a group of people waiting at the front to care for you, listen to you, and pray for you.”  For the first time, I found myself drawn to the front of the sanctuary like a moth to the light.  Several people waited there volunteering their time for people like me who needed a shoulder and compassion that day.  I approached a woman with warm brown eyes and an encouraging smile that reminded me of my deceased Granny. We introduced ourselves, and I discovered this woman taught high school English in my district, except at the alternative school.  She held my hands as I told Drew’s story, unsuccessful in my attempt to remain dry eyed.  I would give anything for a recording of that conversation. I would press play over and over to hear her words of comfort and encouragement and prayers for our family, but I will never forget the peace that washed over me or the scripture she gave, “For God has not given us a spirit of fear, but of power and love and of a sound mind” (2 Timothy 1:7).  Back at home, the rest of the day passed peacefully. Drew retreated to the solitude of his room.

The next day Kody left for work, promising to research help options.  At home, my fears once more grappled with my prayers.  Fears of Drew’s future in a strait jacket vs. prayers to God for power and love and a sound mind for all of us.

Mid-morning my phone rang, and my husband said, “I found a mobile crisis unit for mental health emergencies.  I called them, and they are sending counselors to the house at 2:00.  I’ll be home then.”

Kody took the afternoon off, showing up ahead of time, and together we stood before the picture window in the formal living room, watching and waiting.  Before long, two counselors arrived in a Ford Escort out front.  We hadn’t mentioned our expected guests to Drew. A bearded man probably in his early forties and a younger dark-haired woman holding a folder ambled up the sidewalk, and I opened the door with a hushed, “Thank you for coming,” as they approached the house.

After the introductions, I walked back to Drew’s room and knocked, “Son, you have some visitors here to talk to you.”  Drew opened his door, didn’t ask questions, and followed me to the living room.  Kody had provided background information via phone earlier.

“Hi Drew.  My name is Tommy, and this is Vita.”  On cue, she nodded her head and gave a closed-mouth smile and a wave.  “Your parents invited us here because they have some concerns.  I understand that you’ve had a CAT scan and that you have an appointment for another opinion.  Do you mind if I ask you a few questions?”

“Okay,” Drew said while shooting a glance at me and his dad.

Tommy communicated with Drew in a comforting way, better than the family doctor and the neurologist that we had seen so far, and he completed a thorough mental health assessment.  Tommy knew the questions to ask, Drew opened up, and the sidekick Vita silently transcribed the meeting.  Tommy asked about drug usage and alcohol, and Drew admitted, “I’ve smoked pot and done some mushrooms.  Once I smoked with some people at school, and my arms went up in the air like this.”  Drew lifted his arms above his head to show us, his hands hung limp at the wrists, “and they were frozen there. They were frozen for a while, like hours, and everyone was laughing. I think whatever we were smoking might have been laced with something, but I don’t know. I don’t drink though.”

Tommy said, “Smoking pot can sometimes trigger a person to see or hear things that aren’t there.”  His tone was matter-of-fact and non-condescending.  He spoke as if this type of thing happened to people all the time.  I remember him asking, “Drew, have you experienced a recent death of anyone close to you?”

Drew broke down and wept, “My best friend Ryan.”  Drew and Ryan played soccer together on the Stars in kindergarten, and although they went to different elementary schools, their team stayed together through third grade, and they attended middle school and high school together.  I recollect a handful of play dates when they were younger, but as they grew older, they ran in separate groups. Ryan’s death was a heartbreaking accident and tragedy of appalling proportions. As long as we had known the Woolf family, they loved going to their lake house.  Ryan and his dad Don went cliff diving over the extended Fourth of July weekend. Ryan jumped and never resurfaced.  Don jumped in to save him, but he didn’t reappear either, a tragedy of appalling proportions. Our hearts still break for our friend Pat, Ryan’s mom and Don’s wife, and Ryan’s brother Cameron. This happened the summer of 2007 before Drew’s senior year, three years before this interview with Tommy and Vita.

Tommy probably spent about an hour with Drew in our living room, and Drew’s demeanor calmed from the previous days.  As the session ended, Tommy provided names of therapists for Drew as well as the names of a few psychiatrists.  The crisis had been averted for the moment, and Drew wasn’t interested in any therapy, so I continued to count the days to the highly-anticipated appointment with the neuro-psychiatrist.

After the encouraging experience with the mobile counselor, the appointment with the neuro-psychiatrist disappointed.  Kody and I sat in on the session expecting explanations, but the doctor was quick and direct.  He spent a brief time alone with Drew before meeting with Kody and me alone.  Looking back, I wouldn’t dream of seeing a doctor without a notepad, writing down everything and asking questions when needing clarification, but at the time, I was a rookie. New game. I remember explaining to the doctor, “Drew’s speech patterns have changed, he’s more monotone now, and he rarely smiles, but then he laughs randomly—like an inside joke with himself.”

The neuropsychiatrist reflected and paused, “His affect is off.”  He offered no diagnosis but used the word “psychosis” and spoke of a “thought disorder” to label Drew’s recent episodes. “I want you to follow up with Dr. Watson.” He wrote down his name and the name of the clinic.  “He’s a psychiatrist.”  The appointment came to an abrupt and anti-climactic end.  Kody drove back to work. Drew and I returned home. I plopped down on the couch, opened my laptop, and Googled:

Thought disorder:  a term used to describe incomprehensible language, either in speech or writing, which is presumed to reflect thinking. There are different types. For example, language may be difficult to understand if it switches quickly from one unrelated idea to another or if it is very delayed at reaching its goal or if words are inappropriately strung together resulting in gibberish.

I lifted my eyes from the screen and stared at the ivory paint on the wall ahead.  The Wikipedia definition described the gibberish of read your wrung and the onslaught of disconnected ideas during the recent road trip.

I resumed my investigation, typing:  affect.  I found definitions connected to the experience of feelings and emotions and continued searching.

Flat affect:  A severe reduction in emotional expressiveness. People with depression and schizophrenia often show flat affect.  A person with schizophrenia may not show the signs of normal emotion, perhaps may speak in a monotonous voice, have diminished facial expressions, and appear extremely apathetic.  Also known as blunted affect.

Depression, okay.  I thought.  Schizophrenia?  Really?  I considered the MedicineNet.com definition as I reflected on Drew’s daily demeanor.

Again, I flashed back to the road trip.  I had flipped the radio station to classical in hopes the music would calm him, and Drew started giggling at the sound of the staccato piano.  I remember asking, “What’s so funny?”

He said, “It was a hippopotamus in a tutu tip toeing to the music.”  The thought was fleeting, sandwiched between hysterical, unrelated ideas.  I caught myself staring at the flash of a few specks of dust dancing in thin air, sparkling in the shards of sunlight streaming through the window. I continued Googling.

Psychosis: a loss of contact with reality, usually including false beliefs about what is taking place or who one is (delusions) and seeing or hearing things that aren’t there (hallucinations).

My laptop was hot, and so was my lap.  On the National Institute of Health’s website, produced by the U.S. National Library of Medicine, I found a definition for psychosis below the subtitle Major Depression with Psychotic Features.  I wondered if Drew had major depression.  Why did he spend so much time in his room alone?  He rarely smiled a genuine smile.  I thought about the witch and racist accusations. I remembered the grocery cart episode in the cafeteria at school. Again, staring at my screen but focused on nothing, I found myself shaking my head, No.  I closed my laptop and slid it under the couch.

Six months passed, and five doctors later, no one had answers, no one was willing to diagnose.  After the neuro-psychiatrist, Drew saw a regular psychiatrist, who referred us to a psychologist.  We had seen each doctor once and to no avail.

In the middle of our unsuccessful quest for help, Kody, Drew, and I opted for a family night at the movie.  Lauren kept her own agenda.  We decided on Megamind, a computer-animated comedy named after the super-intelligent alien supervillain, who transforms into a superhero.  We arrived late to a packed theater and shrunk into our seats a few rows from the front.  Behind us sat a young mom and a row of little girls, probably around age eight, probably there for a birthday party. In the darkness, we ate popcorn and laughed, and I silently celebrated the moment of normalcy.

Once home, Drew spouted, “I guess you didn’t see that lady sitting behind me blowing cocaine into my face?”

“You mean the lady sitting with those little girls?”

“Yeah, you didn’t see that?”

“No, Drew, I didn’t see that.”

That night drugs continued to seep through the vents of his bedroom.  Because of the toxic air, Drew couldn’t stay in his room, and he checked himself into the hospital for the first time.  He packed a bag, and I drove.  I’m not sure he knew that it was a psychiatric hospital, but he wanted more than anything to escape the poison of his bedroom.  Within the next couple of days came the long-awaited, much-anticipated diagnosis: paranoid schizophrenia.  By this time we had witnessed text-book examples of symptoms and read enough to understand the possibilities.

Even though Drew initially said, “There’s something wrong with my brain,” for the next five years he denied the diagnosis and refused medication.  He preferred brain damage to schizophrenia.  I don’t blame him.  Stigma has a firm hold on mental illnesses.  Without open discussions about mental health issues, people—patients and families—tend to feel shame, sometimes hiding, sometimes denying the truth.  Medication non-compliance remains a common problem among patients with brain disorders.  The paranoia causes trust issues, and Drew believed for many years that the medicine is poison.  Without medication, patients often become psychotic again and cycle back into the hospital.  Consequently, Drew was hospitalized three different times for approximately three months of his life within the first year of his diagnosed brain disorder.

I’ve never known a parent of a child with cancer to hide the illness from friends, family, and co-workers, but in the beginning, that’s what I did. I couldn’t talk about it. For me, it wasn’t shame. It was grief. It took years for me to be able to discuss details with my closest friends and family without breaking down. I still cry for Drew. Kody and Lauren do, too. Our family has lost much, but Drew has lost the most: his former self, relationships, and ambitions. The pain hangs like a dark, heavy cloud.  During that first year of hospitalizations, it took all I had to put on a happy face all day long in front of my high school students. Many times I would run into someone who knows Drew and would ask about him. Many times I would say something like: “Drew’s okay.  He’s not in school.  He’s trying to figure out his life.”  Somehow this explanation seemed simpler.  I didn’t say it out of secrecy.  This insidious brain disorder had hijacked my son’s life.  Many times, I would make it out of the grocery store or out of school and into my car just in time for the cloud to burst. I would pound the steering wheel with my fists and sob over the substantial interference of the illness on Drew’s life, on all our lives. As I’m coming to terms with the new normal, part of me thinks that maybe my job is to fight the stigma and to help others understand that there are illnesses of the body and illnesses of the mind.  Both are equally real and often unavoidable. There is no shame in illness, and I continue to pray—for health, hope, and understanding.  And I believe in miracles.

Mental Illness

People continue to ask, “How is Drew?” So I’ll be dedicating my May posts to mental health awareness and the millions who silently suffer from brain disorders.