Stuck

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?

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BringChange2Mind

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.

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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.

That’s what BringChange2Mind is all about. I encourage you to check it out and take the pledge:

I pledge to follow the Bring Change 2 Mind principles:

For people living with mental illness:

  • I am living with a mental illness that is treatable and manageable.
  • I am a valuable and valued person and I deserve to be treated with respect.
  • I am responsible for the decisions and choices I make in my life.
  • Educating myself about the symptoms of my illness, and any side effects I may have from
    treatment, will help me find and use the resources I need to work toward stability.
  • Communicating about my experiences with others will help them support me in difficult times and keep me “on track.”
  • If I am feeling suicidal, it is critical that I reach out for help, for in the face of real pain and suffering, it is others who can help me with a commitment to live.
  • I can reduce stigma in myself and in others by being open about living with mental illness, naming it out loud, and raising people’s awareness.
  • For everyone:

  • It is likely that someone I know is living with a mental illness and that fear of stigma may be preventing them from accepting their illness and seeking help.
  • I can make a difference by learning about mental health issues and the devastating effects of stigma.
  • If someone I know exhibits sudden changes in behavior, I will pay attention and reach out to them.
  • If someone I know is experiencing suicidal thoughts, I will take it seriously and make every effort to ensure they get help.
  • I will not perpetuate or tolerate stigma of any kind and will commit myself to changing the way society views people living with mental illness.

  • Friendship, Failure, and the Future

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    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.