Wuf! Woowoo woof!
That’s dog speak. Roughly translated, it means “Wake-up, wake-up, WAKE-UP.”
Okay, so it’s 10:48 am and maybe I should be up already, but I’m celebrating Sleep-in Saturday. Yeah, it’s a little holiday, I made up. Pretty awesome, right?
Max is looking at me from the end of the bed, tail wagging. He can’t get all up in my personal space because Ramsey is blocking his path to me. God bless her.
“Go away. Go lie down! It’s too early, Max.”
Max can tell time. “Woo wulf!”
I roll onto my stomach and he jumps on the bed. He nudges my neck and my ears trying to get to my face. Stan hollers, “GET DOWN!”
Back on the floor, Max positions himself next to the chest of drawers, rhythmically beating its side with his tail. Bam bam. Bam bam. Bam bam. When I look at him, he leans in closer, barely containing himself, and whines coaxingly.
Alright. I’m up.
I pull on my yoga pants and red parka and walk him out to the dock. Ramsey shuffles along behind. Somewhere in the brush, I hear Tucker bouncing around. Only Max is on a leash because Max can’t be trusted.
“I wish I could let you off leash, Max. Really, I do. I’d like to see you run around and play with Tucker. But I know you will bolt.”
I’m sitting on the built-in bench on the dock that reaches out into the marsh. Max sits beside me watching the egret across the water. He’s pretending to be well-behaved.
“I always come back,” Max says.
I glance at him, surprised by his command of the English language. Or perhaps, its me, and I can suddenly understand dog speak.
“You do, but why run? Don’t you like living with us? Don’t we take good care of you?”
“I LOVE living with you.” He says this both fiercely and matter-of-factly. “I have my own bed to sleep on. Two beds in different rooms. I have toys. I’ve never had toys. Ever. I love my toys. I love to toss them and catch them and make them squeal. I get food everyday, twice a day, and you never forget. Never, not once. You always put water out and refill my blue bowl when it gets empty. You clean my ears when they hurt and take me on walks. You hug me and pet me. And talk baby-talk. I like baby-talk. You rub my belly. You are my humans. I love my humans.”
He is quiet for a moment. “And there is the man. I LOVE the man.”
He is talking about Stan. You would just have to see them together to understand.
“You didn’t love him at first. Do you remember? You seemed . . . afraid of him. You would cower and keep your distance. As if someone, some other man, had hurt you in the past and you didn’t trust him.”
“There was a man like that. Once. I do not speak of him.”
He continues to look out across the water but his eyes are sad.
“Is he the one who gave you the lightning bolt? The tattoo on the inside of your right thigh?”
He is quiet. His ears perk as a fish leaps from the water. He doesn’t want to talk about it.
“You know when I saw it, I wanted to rename you Harry. You know, Harry Potter? Because of the lightning bolt?”
He does his best RCA dog impersonation. Note to self: dogs don’t get pop culture references. I change the subject.
“What about Jerri? You didn’t seem to recognize her at first but then you seemed happy to see her.”
“She is different now.”
“She is . . . tamer.”
“What do you mean, Max? How is she tamer?”
“She was . . . like a creature in the wild without a human to care for it. Hungry, scrounging for food, dirty, with claws, terrified. Muttering, always to itself. Crying out, unexpectedly. Not sleeping for days. Then sleeping without waking. Like an injured creature.”
“And what did you do, Max, when you lived with her?”
“When she was . . . lost, I lay beside her. I kept her warm. I sang to her. I brought her back.”
“But who cared for you, Max? How did you get by?”
“Mostly there was food in my bowl. I would save it. When it was gone, there was the bag in the closet. I could get into it. Or plates of food she had partially eaten on the floor. Sometimes there was no water in my bowl. But there was always water in the big white bowl where the baths happened. Sometimes I needed to go out and I would cry and I couldn’t bring her back. When my insides hurt from holding it, there was nothing else but to relieve myself on the brick wall. I was ashamed for defiling my den. It is shameful.”
“Max, I’m sorry. I’m so sorry.”
He turns and hoists himself up by his front legs to lick my face. Getting down, he places his head in my lap and closes his eyes as I smooth back his fur.
“I have known joy,” he says. “I have tracked the deer through the woods to their secret place. I have splashed in the cold creek and wallowed in the grass. I have rolled on the muddy hill. I have run full out with the wind in my ears. I have slept under the stars and in the warmth of the sun beam. I have been touched, and held, and snuggled. I have loved my humans. I have known love.”
“You’re a good dog, Max. No. A great one.
“I confess, I didn’t want to take you in at first. But how could I not? I’m sorry about your time with Jerri. She was sick and not in her right mind. You were good to her. i don’t know if she would have made it without you. But it’s your time now, Max. To be taken care of. To be loved. And I do love you, Max. Even when you disrespect Sleep-in Saturday.”
“I know,” he says. “Now, where’s my breakfast?”
Jerri, in her right-mindedness, is thinking about making some life improvements. She would like to move into a better neighborhood where dealers don’t make door-to-door sales calls. Also, Housing for New Hope recently terminated the housing agreements for a number of tenets in her apartment building and while she makes an effort to follow the rules, she is tired of worrying that she will be the next one to go. So Jerri recently applied for another subsidized housing community in the north part of town.
The application asked if she had ever been charged with a felony. Unfortunately, Jerri had to respond yes. Twenty years ago, when she was 29 and a practicing addict, she broke into our parent’s house and stole a TV. Mom reported it and Jerri was charged with larceny. She was put on probation and required to do community service. Jerri considered lying on the application but to her credit, she decided it was best to tell the truth (which, BTW, is google-accessible for anyone industrious enough to check). She hoped that the two decades of felony-free living since would weigh in her favor.
Apparently, it did not. Her housing application was denied.
Jerri is also considering applying for a part-time job. She can barely make ends meet on her disability check and in order to save money for a scooter, she is eating at the shelter and ear-marking her grocery money for the purchase. The problem with getting a job, however, is it puts her disability payment in jeopardy. I haven’t researched the rules (and if you know them, please share), but I’m told her disability check will be reduced by the amount of money she makes and when her income reaches a certain amount she will lose disability altogether. Which means she will also lose Medicaid. We could live with that if we knew she was going to a) remain stable and b) be able to hold down a job and c) make enough money to afford Medicare.
I’m not sure she can even get a job. There’s the issue of the felony for one thing. Every job application includes a question on criminal record. She has no recent job experience and she also needs to work on her personal appearance. Whether we like it or not, others judge us on our appearance and particularly when assessing us for a job. For years Jerri has been too overwhelmed with symptoms to care about personal hygiene and this has taken a toll on her teeth, hair, and nails.
I read a fascinating memoir over the weekend, Signs of Life and the following observation by the author, Natalie Taylor, really resounded:
I never realized that certain people really are stuck. And they are not stuck because they don’t work hard or because they don’t want to get out of where they are. They’re stuck because certain forces in the world won’t let them out.
I think a lot of people with brain disorders, Jerri included, are stuck even after they recover. Many of them have police records because of things they did when not in their right mind. They can’t explain the gaps in their job history because that requires touching on the taboo mental illness topic. They’ve lost touch with the norms of basic etiquette and personal hygiene. And in the US, they are reliant on social systems that don’t support easing out of disability and back into the workforce.
Is there any hope for them? Really interested in your point of view. Am I missing something?
Over the weekend, I saw the BringChange2Mind public service announcement for the first time. In it, crowds of people are walking through Grand Central Station. One man walks toward the camera which zooms in on his white tee-shirt. It says “Schizophrenia.” The camera steps back and a woman is standing beside him in an identical tee–only hers says “Mom.” Another couple walks down the steps. His tee says “Post-traumatic Stress Syndrome”; hers says “Battle Buddy.” The camera follows a third couple. On the back of his shirt, it says “Bipolar”. On the back of hers, it says “Better Half.” When Glenn Close and her sister, Jessy walk up, Jessy’s tee says “Bipolar” and Glenn’s says “Sister.” This, naturally, moved me to tears.
The message of the ad is “Change a mind about mental illness and you can change a life.” The campaign tagline is “Working together to erase the stigma and discrimination of mental illness.” For me, there couldn’t be a more timely message.
I am a witness to stigma against mental illness every time Jerri and I are out together. I hear stories of her experiences when she goes out alone. I observe how she wrestles with her own feelings toward others with brain disorders and yes, how I also struggle. This overt discrimination has to STOP. That’s what Glenn and Jessy are trying to achieve.
I’m particularly appalled about discrimination within the healthcare system. On Wednesday, I saw my internist about a minor health issue. He is also Jerri’s doctor and given my rant last week about the-medication-of-which-we-do-not-speak, I thought it a good opportunity to re-iterate my concerns. “I read the PI for Adderall last week, Dr. F, and it’s contraindicated for people who have glaucoma. Did you know Jerri has glaucoma?”
He said he did not, however, he should because I’ve told him before. On multiple occasions.
“Is she still taking classes?” Dr. F. asks this question because Jerri tells him she can’t focus without the Adderall and she needs it for school. He is willing to prescribe the drug if she is in school despite her history of addiction.
“No. Her financial aid was suspended because she needed to complete two-thirds of her coursework with a passing grade. She dropped one of her courses and failed another, so she lost financial aid.”
Dr. F. gives me that look. You know the one. The one that says, “Jerri going to school is a joke. Of course she messed up. She is c-r-a-z-y.” Finger-twirl to right of ear.
I keep talking. I don’t know why. Maybe from guilt. Maybe I too have sent him signals indicating its okay to disrespect her. “She can get it back if she completes two-thirds next semester but she has to pay for the semester on her own and she can’t afford that.” This is more information then Dr. F. needs to know but I seem unable to shut-up.
“Her case worker offered to go with Jerri to the financial aid office, explain Jerri’s situation, and see if they could work out a way for her to continue, but Jerri feels so bad right now, she’s not interested in pursuing it.” Geez, you’d think I WANTED her on this med.
Dr. F’s body language indicates he’s heard enough. He is ready for me to wrap things up.
“She really does seem to feel bad. I know people with depression can experience physical pain and Jerri is very depressed right now. I’m concerned that she’s not eating. You know the time she was hospitalized with that infection, she didn’t even know she was that sick. She almost died. I’m concerned that this could be a repeat.”
Dr. F smiles condescendingly. He doesn’t believe she’s really sick. “Oh, there’s something wrong with her alright. And it’s more than bipolar. She’s bipolar alright but there is something else too. I’m not sure what but it’s more than bipolar.”
He’s not saying he’s concerned about her physical status–he’s saying she’s nutty as a fruit cake. That she’s making it up. His tone is exasperated not concerned. I recognize it because, sadly, he sounds so much like me.
You see, its okay to treat people with mental illness with no respect even if you are in the medical profession. Its okay to roll your eyes, give them lip service, ignore what they tell you, and hurry them through the visit just to get them out of your office. When Jerri sees him in two weeks, that’s exactly how Dr. F. will behave–unless I go with her. Having a relative present somehow makes you more deserving of dignity.
Here’s what Deb, one consumer of mental health services, had to say about the stigma:
“I have endured every medication as well as ECT. I have endured family, “friends”, even health care providers discriminating, belittling, and abandoning me. I am young-ish – the joys and possibilities of life have been robbed by my illness and those “superior” and unempathetic souls who judge against it. I haven’t given up yet; but it’s hard – especially when you feel alone. Life is hard enough for us already – help us to not live in fear of something we didn’t cause or ask for.”
Jerri is sick. She has a brain disorder. We treat other sick people with preference and concern. I can’t imagine Dr. F. rolling his eyes and shooing a cancer patient out of his office. So why is it okay with bipolar? The answer is it’s not. It’s not okay. And it will take every single one of us taking a stand to change it. Mental illness should not be a “safe harbor” for discrimination.
I pledge to follow the Bring Change 2 Mind principles:
For people living with mental illness:
treatment, will help me find and use the resources I need to work toward stability.
I was flipping channels tonight and stumbled upon the premiere of Lifetime’s Of Two Minds, a movie about a woman, Billie, who takes responsibility for Baby, her sister with schizophrenia, after their mother dies. Billie is played by Kristin Davis who is best known as Charlotte on Sex and the City. It should come as no surprise that I sobbed uncontrollably throughout.
Despite my emotional reaction, I have to give Of Two Minds a mixed review:
Thumbs up for:
- Incorporating Billie’s estrangement from her Mom and the loss of parental attention, time, and interest which is commonly experienced by many siblings of people with mental illness. The movie only lightly touched on this. In the hospital, Billie has a chance to talk with her mom before she dies. Instead of using this time to express her love for Billie, her mom focuses on Baby and asks Billie to care for her. I’m not sure anyone who hasn’t grown up like this can fully understand how painful it is to feel like you don’t matter to your parents. I would have liked to have seen a greater emphasis how parental favoritism creates tension in even adult sibling relationships despite the fact it isn’t the sibling’s fault.
- Accurate portrayal of the emotional rollercoaster. The hope felt when the sibling is doing well and the anguish when the sibling relapses. You think for a moment, “This is it. This time she’s really going to get better!” But it doesn’t last. There is always a relapse. You learn to temper your hope so the relapses are less devastating. You learn to live in the good moments, the normal moments, because they are fleeting.
- Communicating a family member’s almost painful desire for the best life possible for the one with mental illness and the ongoing sadness that comes with knowing whatever that life turns out to be, it will never measure up to what you wished for them.
- The multidimensionality of Baby’s character. She is not presented as a freak but as a real person, someone scared, at times hopeful, grieving the losses inflicted by her illness, emotionally hungry yet distrustful. One scene that made me sob was Baby sitting on the porch at her Aunt’s ranch. She is doing well, really well. Billie asks if she’s going to call it a night and Baby says she wants to stay up just a little while longer and enjoy what its like to feel normal.
Can I just stop for a moment and say how much I HATE this devastating category of disease we call mental illness?
Thumbs down for:
- Inadequate portrayal of the often deplorable housing options available to people with mental illness particularly those who do not have financial support from family. Billie is able to pay for Baby to live at a nice facility with full-time professional care. Sadly, most of us are not able to do this for our siblings. And if we are, do these places even actually exist? In Durham? I’d like to know where. There is a scene in the movie where Billie visits a room and board option in a bad neighborhood but I can tell you, even that looks like middle class compared to the group home and boarding houses where Jerri spent time after first coming to Durham.
- Lack of depth in Billie’s character. You don’t walk away with a strong sense of her childhood pain or the raging conflict she feels about the situation thrust upon her. The movie tries to depict Billie’s desire to give her sister a good life without having to give up her own life but it falls short somehow. She comes across as insensitive and self-focused. You wind up feeling more compassion for Baby when you should have empathy for Billie.
- The seemingly magical resolution of what to do with Baby. Billie is told there is a three year waiting list for most assisted-living facilities yet when she and her family decide Baby can’t live with them, suddenly a spot opens up at a idyllic ranch-like property. Really? If only it worked like that in real life!
It’s been a tough week for us here. Jerri is going through an episode right now which made watching some of Baby’s episodes even more difficult. Jerri has had gastrointestinal issues and she stopped taking her antipsychotic, Latuda, because she said it made her nauseous. Whenever she goes off this med, the impact is physical, emotional, and mental. Physically, she clenches her jaw, her lips protrude, she moves awkwardly as if her brain is not communicating with her muscles. She talks fast and can’t stay on track in a conversation. She becomes almost incoherent. She gets wild-eyed and cries easily. She calls and gives orders like “You and Stan have to go to Walmart and get an antenna for my TV” or leaves half messages like “I’m done trying to be friends with Catherine, because . . . [click].”
I spoke to her Internist’s nurse and she fears Jerri is dehydrated. Jerri needs to go to the hospital but refuses. She said after they discovered she was bipolar the last time, the ER couldn’t get rid of her fast enough. I don’t doubt this at all and knowing they will treat her differently if I’m there, I promised to go with her. She still won’t go. Telecare can’t help in this situation since the health issue is physical, not mental. (Exasperating given “mental illness” is actually a chemical imbalance in the brain so yes, it too is physical!) All I can do is check in periodically to see if she is better or if she’s ready to try the hospital.
So while the closing credits have rolled on Lifetime’s Of Two Minds, the drama at my house continues.
There are days with Jerri when a ray of true self breaks through the dark, seemingly impenetrable clouds and I get to experience what many other sisters have with their siblings. Yesterday was one of those days. I was making the six hour round trip to pick up Ramsey from my sister-in-law, our dog-sitter while we were in Ecuador. On the way, I called to check in with Jerri and she returned my call as I was on the way back home.
She sounded good, like herself, very much in her right mind. We spoke about friendship, failure, and the future. We talked for over two hours. It’s the friendship discussion that’s bouncing around my head at the moment.
Jerri had two good friends before moving to Durham. One, Ellen, was a friend from high-school and the other, Susan, was once her sponsor at Narcotics Anonymous (NA). Both were dual diagnosis like Jerri. The three of them had a falling out several months before Jerri moved. The story is not that clear but it involved drugs and Ellen, still active in NA, blamed Jerri for her relapse. Susan believed Ellen and was so upset, she ended her friendship with Jerri.
The simultaneous loss of both Susan and Ellen was devastating. Jerri maintains her own innocence but says Susan wouldn’t even listen to her side. She is still very hurt by it. I miss Susan as well. She was extremely helpful to me when Jerri and I first reconnected. She was the one who put me in touch with volunteers at NAMI NC – people who explained the mental health system in Durham and gave me sound advice on handling crises when Jerri first moved. Susan was also a great role model. She’d been clean for over 5 years, had a job, and a family. I still have her number in my cell contact list although I haven’t called her since the break-up. I wonder if there is any possibility for reconciliation. While time does not always heal all wounds, sometimes it does change perspectives.
Jerri misses having true friends. She hangs out with her neighbor, Catherine, who is schizophrenic and not well. Even Jerri, who you’d think would know better, has difficulty separating Catherine from her illness and takes it personally when Catherine acts unpredictably.
True friends are hard to come by even when brain disorders are not a factor. After I moved to Durham, it took me about six years to find true friends and I think how much harder it will be for Jerri. She will have to put herself into uncomfortable social situations and then of course, there’s the stigma. Brain disorders are not something you can hide and most people shy away. Even those who have experience with mental illness and are more accepting can be reluctant to strike up a friendship. Mood disorders affect relationships more than illnesses like diabetes, for example. Jerri, herself, sees how difficult it is to be in a friendship with Catherine, but she doesn’t apply this same truth to herself.
“Normal people recognize that something is off with me much quicker than people with mental illness,” Jerri confided yet she longs for “normal” friends. Interacting with so-called normal people, however, is anxiety-provoking. Her internal scanner is on constant alert. She senses when others have detected her “offness” and then she no longer wants to be around them. Better to be alone than to be singled out as different or worse, ridiculed for it.
This internal scanner is something we share. I think it’s a survival mechanism we developed because honest communication was practically non-existent in our childhood. To avoid emotional minefields, you had to become a master at reading body-language, facial expressions, and tone of voice. Upon entering a room full of strangers, I can discern in an instant who is predisposed to liking me and who is not. The difference between me and Jerri, however, is I’m okay with people not liking me. It’s inevitable, right? I don’t like everyone I meet, often for a myriad of reasons I can’t even put a finger on. Why should I expect others to be any different?
I’m not saying that it doesn’t bother me to be disliked. It’s just that it doesn’t matter. The dislikers don’t really know who I am. I know me better than anyone and I like me. I work hard to be someone that I can like, someone who tries to do the right thing even at significant personal cost. Sometimes I fail. Many times I fail. I forgive myself. I know in my heart I can do better. I get up and try again. I acknowledge the things about myself I don’t like. I work on changing them. Those things do not define me. It is never to late to be the person I might have been.
I wish I could transmit this way of thinking to Jerri. She admitted she doesn’t like herself. She has often chosen what is easy over what is right and she hates herself for it. She has deep regrets over failures to her children. She doesn’t know how to forgive herself. She discounts the impact mental illness has had on her ability to make sound decisions. It seems to me that before she can make friends with others, she must first make friends with herself.
We talked about ways to meet friend-worthy people like church small groups, volunteering, or bipolar support groups. Jerri conceded that if the people in the support group were actually recovering and living more normally than the mentally ill people in her housing complex, she might meet friends there. I told her about a coworker’s husband who is bipolar, stable, and working as an office manager for a medical practice. “I’ve never met anyone like that,” she said.
As we talked, my heart ached a little. There are so many things I want for her, so many things she must choose for herself. I imagine this is how God must feel about all of us.