My Sister’s Advocate

In September, Jerri’s case worker, Catherina, set-up a meeting with Brian (the new property manager at Jerri’s housing complex), Hap (the former property manager and current resident advocate) Jerri, and myself. The meeting was to confront Jerri. Hap had, supposedly, caught a man red-handed in Jerri’s apartment cutting up copper piping that he’d allegedly stolen, possibly from the building. The price of copper has skyrocketed over the past few years and there is a booming black-market for the stuff. The implication? Jerri was involved in illegal activity and her housing was in serious jeopardy.

When Catherina first notified me, I immediately called Jerri to get her side of the story. It still surprises me when I hear about these things from Telecare and not from my sister. In her shoes, I’d have wanted my side to be heard first and to give me a heads-up. Instead, Jerri seemed surprised Telecare had contacted me. She didn’t know the situation had escalated or that a meeting was planned. She thought she had handled it.

“Remember the guy at the boarding house on Fayetteville where I lived who used to collect all the junk? Well it was him. He was cutting across the yard here and saw me. He stopped to talk and I told him I lived here now. He asked if he could come in and use the bathroom. I didn’t know he had copper pipe on him. Did you know copper is worth a lot of money? I don’t know where he got it but it wasn’t from here. What’s the big deal? He was just using the bathroom.”20120128-194412.jpg

[Me] “Was he cutting up pipe in your apartment?

[Jerri] “Not that I know of. I stepped out for a minute while he was here but I never saw him cutting anything.”

[Me] “Hap said he caught the guy using a saw on pipe in your apartment.”

[Jerri] “That’s not true. I was there when Hap came by.”

Have I mentioned that I’m never sure I can completely believe what Jerri says? Like others in our family, she has a way of rewriting history to fit her needs. It’s one of those crazy-making things about my family and why TRUTH is so very important to me. In my other relationships, I have a zero tolerance policy. If I catch you lying to me, you’re done. There can be no relationship where there is no trust. It was my mom’s tendency to fictionalize the facts that finally broke the back of that relationship. But what about forgiveness? Well, that’s a blog for another day but I will say this. Forgiveness doesn’t mean there are no consequences. God forgave Adam and Eve and he still threw them out of the garden. But I digress.

The day of the meeting as we waited for Jerri to arrive, Hap made conversation with Catherina. “Don’t get me started on Bronwyn,” (eye-rolling), “she’s a real piece of work. You know what I mean by THAT” (nudge, nudge). “Yep, Jerri really messed up this time. Let’s see her talk her way out of this.” And this guy is supposed to be an advocate for the residents!

He’d already made up his mind about Jerri. I’ve seen this so many times over the years. People judge Jerri by how she looks, where she lives, and who she associates with. They don’t take the time to talk to her and discover who she really is. It infuriates me. I suppose it’s human nature to size up people this way but we bring all kinds of prejudices and baggage to the table. Seeing how Jerri is treated has really led me to take a hard look at myself and the assumptions I make about others.

So at the meeting Hap immediately started accusing Jerri. He hammered her with questions like, “where did the pipe come from?” and “what where you two going to do with it?” When she tried to answer, he talked over her. Jerri had the flu that day and I could tell she just wasn’t up to dealing with him. And despite my own questions about Jerri’s truthfulness, I really didn’t think she would be involved in something like this. Mainly because it takes a lot of energy to “salvage” pipe and Jerri struggles most days to get out of bed.

After about 15 minutes, I’d had enough.

“I’ve been sitting here listening to you, Hap, biting my tongue, but I really can’t stay quiet any longer. Do you even know Jerri’s side? Did you bother to ask her? She knew the man. She used to live in the same boarding house. He needed to use the bathroom. She was just being nice. She was not involved. I’ve spoken to her many times about not letting people into her apartment but she’s allowed visitors, right?” Hap attempted to interrupt and talk over me. I raised my voice. “I’m sorry but I’m still talking. Nope, not finished yet. When I’m finished, I’ll be happy to listen to what you have to say. Still talking here. Frankly, Hap, it troubles me that you are the Resident Advocate and yet you clearly have a low opinion of many of the residents including Jerri, you clearly make up your mind without seeking all the facts, and you clearly aren’t interested in listening to anyone but yourself.” Whew. I was hot.

Hap did a complete 180. It was as if someone had unscrewed his scalp, pulled out his old personality and pushed in a new one. Suddenly, he was the professional Resident Advocate he should have been from the start. The whole incident was shelved. Just like that.

Had I not been there, had I not spoken up, I fully suspect Jerri would have lost her housing. This is one of the most disturbing things to me. People with brain disorders do not have a voice. No one listens to them. No one believes in them. And they are taken advantage of and wronged and ignored and scapegoated and even bullied because of it.

Afterward, Catherina thanked me for “what I did”. “I don’t have the buddy-buddy relationship with Hap that he thinks I do but I still have to work with him. You were right about everything you said. And you saw how he changed. Thanks for that.”

When we had lunch this week, Jerri reminded me of the meeting. “Catherina and I where talking about what you did at the meeting. Remember how when we were kids, I stood up for you when that neighbor kid, what was his name–oh yeah, Michael–picked on you? Remember when he threw that big rock and hit you in the stomach? And I took you to his house and showed his mother what he’d done? I told Catherina that I stood up for you when you needed it and now you’re doing it for me.”

As I surf the net looking for other siblings like me, I read a lot of postings from sibs who are terrified of having responsibility for their brain-disordered brother or sister when their parents can no longer care for them. They don’t want to sacrifice their own happiness for their siblings. I understand that, I really do. But it doesn’t have to be all or nothing. I believe most brain-disordered adults want to live independent lives. They don’t want a full-time, live-in caregiver. But they do need an advocate. You can be an advocate and still have a life.

It took about a year of trial and error, asking questions, seeking professional help, exploring the mental health system, and perseverance to reach this current state where I can be a sister, an advocate, and a friend without having full guardianship responsibility. And we are fortunate in that Jerri qualified for disability years ago and Durham has many supports for people with low income and mental illness. I just want to offer up hope and encouragement to families and particularly sibs in similar circumstances. Any other success stories out there?


Childless by Choice (The Normal One, Part 2)

More self-analysis today based on a quote from Dr. Jeanne Safer’s book, The Normal One. It was a reference to this quote in a customer’s critique of the book on Amazon that convinced me to buy a copy. The quote is:

It is no accident that a disproportionate number of normal siblings choose not to reproduce.

Yep. That’s me. Childless by choice. I was intrigued to find out many siblings like me make the same decision.

I can’t remember a time when I ever wanted children. I didn’t even like playing with baby dolls. I can only remember asking for two, Mattel’s Baby Tenderlove, because my best friend Julie had one and I thought it might be fun for us to switch up from playing Barbies all the time, and Ms. Peep, because Jerri was so attached to hers, the doll obviously had charms not readily apparent to the casual observer. Neither of the dolls “took.” As a child and a teen, I was rarely exposed to babies and when I was, I was not taken in by their cuteness. They meant responsibility, something I had already had more than my fair share of.

Stan and I dated for 4 years in college and when we started talking about marriage, I was extremely direct about my lack of interest in kids. I said something to the effect, “Do you want kids? Because I’m not having any and if children are important to you, you need to marry someone else.”

In the U.S., particularly in the South, people judge you for choosing not to have children.

“So, do you have children?” they ask.

“No, we don’t. It’s just the two of us.”

“Oh.” Uncomfortable pause. They struggle with how to phrase the next part. Some are more straightforward than others.

“Did you want to have children and just never . . . did?”

“No, I’ve never really wanted them. I guess I just didn’t get the “mothering” gene. (I used to be quite honest. Of course, now I’ve learned my lesson, and I tend to be more vague.)

“Oh. Well. Motherhood isn’t for everyone. It is extremely hard work. There’s a great deal of sacrifice involved. Not everyone is up for that. You can’t really climb the corporate ladder with a kid in tow. You have to put a lot of stuff on hold while they’re young. But it’s so worth it. It really is the most important work there is. I’ve always taken the Bible quite literally, you know. The whole ‘be fruitful and multiply thing’? God is really all about the family. Don’t you think he wants all of us to raise families? You could always adopt you know . . .”

You might as well grow fangs as confess you don’t want children. You are a monster either way. You are selfish, self-centered, superficial, caring only about your career or getting ahead, unwilling to sacrifice your own needs for those of someone else, not valuing the things that really matter in life, like family, a sinner, willfully defying God. No one considers that perhaps you’re scared you just won’t be any good at it or you’ll emotionally damage the child the same way you were damaged or the responsibility might be the very thing that plunges you over the edge into madness or you’ll end up with your sister’s kids down the road and instead of 2 of your own, you’ll wind up raising 6.

Not to mention that your mother has told you repeatedly for years that it doesn’t matter how good a parent you are, it’s the luck of the draw. You can still end up with a child like Jerri who will make your life a living hell. That you’ve heard your mother say so many times “Don’t ever have children” it seems permanently tatooed on your frontal cortex. In case you find this shocking, here’s another quote from Safer that shines some light:

Parents need their children to see the world through their eyes; the more disturbing and precariously held the view, the more threatening a contrary perspective can be . . .

Maybe my mother is afraid she’s responsible for what happened to Jerri whether genetically or because of bad parenting. Her belief that “you can’t help the child you end up with” is precariously held. Maybe that’s why it’s so important for the rest of us to believe it too.

You have to read between the lines a bit in The Normal One to discover the reasons why many “normal” siblings don’t have children. Not surprisingly, they reflect my own.

  • Fear of repeating the past – a past that was so traumatic the first time around, you will do whatever it takes to avoid reliving it.
  • Fear you will fail your children the way you failed your sibling.
  • Fear you will damage your children because you have no model for how to be a good parent.
  • Assumption that you will acquire care taking responsibilities for your sibling. (This one never occurred to me since Jerri was expelled from the family as a teenager.)
  • Dr. Safer reflects that many normal siblings who do have children either go to great lengths to avoid the errors their parents made or don’t believe their parents made any. Either way, they will ultimately see the faces of their damaged siblings reflected in those of their children.

    Accepting that to some degree you are inexorably bound to reproduce at least part of the essence if not the form of your original family relationships, and not only in ways you consciously choose (or wish), is a crucial step. This involves giving up the grandiose notion that you can change history.

    The truth is my history haunts me and it always will. I had hoped by not having kids I could somehow rid myself of it. Or at least, loosen its grasp. I’m not sure that I succeeded.


    Invisibility (The Normal One – Part 1)

    The Normal One by Dr. Jeanne Safer

    I just finished a book by Dr. Jeanne Safer called The Normal One: Life with a Difficult or Damaged Sibling. The book explores the effects of “problem siblings” on “normal ones” and is based on interviews with over 60 “intact” siblings. I found myself on almost every page.

    Apparently those who grew up as I did with a troubled, difficult or disabled sibling share a common set of personality traits which include premature maturity, compulsion to achieve, survivor guilt, and fear of contagion. Who knew?

    My kindle edition has so many highlights, its more yellow than white so I decided to dedicate the next couple of posts to unpacking some of the quotes that resonated most. Here’s the first one:

    Invisible is the word normal children most often use to describe their place in the family

    Because the everyday problems we faced as kids were nothing compared to those of our siblings, our parents always put our siblings first. We were chronically overlooked. Our parents didn’t do this on purpose. They were overwhelmed by situations they never bargained for. Understanding this, however, does not minimize the actual consequences to us. We continue, even in adulthood, to have a hunger for our parent’s attention that will never be satisfied. We feel like we don’t matter to them. Our needs were so consistently ignored, we don’t even acknowledge them to ourselves.  

    Months ago I wrote an essay called “Super Powers.” It starts out:

    There are some days I feel so invisible, I’m convinced not even God can see me. If I were a Super Hero, I’d be Invisi-Girl.

    Perhaps at some point, I’ll share the full essay. For now, I hold it up as confirmation of Dr. Safer’s point.

    What did my parent’s do exactly that made me feel invisible?

    • They did not assign me a curfew. That’s right. As a teenager, I could stay out all night as long as I let them know where I was. When I’d call at 1 am to say “I’m at Michael’s house playing cards”, I’d wake up my parents. No one sat up waiting for me to come home. No one worried about my safety. They only had the emotional capacity to worry about one child and that child was Jerri.  “We trust you,” they’d say. I was 15 for Pete’s sake!
    • They did not attend events important to me. My senior year, I was nominated to Homecoming Court. I was surprised and incredibly honored. My parents skipped Homecoming. Mom said, “Too many people know I’m Jerri’s mom. I just can’t face them. They are all judging me behind my back.” I was in the Marching band; they never came to a game. I played soccer; they never came to a game. I suppose they came to my high school graduation but frankly, I don’t remember.
    • They did not protect me from predators. When I was 16, a 28 year old man pursued me. Looking back, I think he was a pedophile. My mother knew about him. The only thing she had to say was “I don’t think it’s a good idea for you to see him.” My senior year of high school, I kept stats for the boy’s soccer team. At the end of the year, the two coaches held a party including alcohol for the team of about 20 underage boys. The stat girls (4 of us) were invited. Hmmmm. 20 boys, 2 men (one of whom had hit on me in the photography dark room at school), beer, 4 girls. What is wrong with this picture? As I was walking out the door, Mom said, “I don’t think this party is a good idea but you do what you think best. It’s up to you.” On the other hand, they were constantly monitoring who Jerri was with. They banned some of her friends from our house. When she didn’t come home, they would drive through the town looking for her. When found, they would drag her butt home.

    As an adult, my mom only called when she wanted to complain about Jerri. She rarely asked about my life or what was going on with me. In my 30’s, I wrote her a letter and said I no longer wanted to discuss Jerri. “If she is all you want to talk about, please don’t call again.” Mom apologized and things got better for a while.

    About 4 years ago, I invited my parents and Jerri’s kids to the beach for Christmas. Stan and I rented a small mansion and invested a substantial amount of money in the vacation. My family left early. Mom said, “The kids are bored and this isn’t what we expected. We thought there would be more sights to see and things to do.”  I was so furious, I stopped talking to them. My mom never sought reconciliation. Neither did I. Two months later, my parents wrote me out of their will. To this day, we are estranged. It still dumbfounds me how incredibly easy it was for them to erase me from their life. I guess it shouldn’t. They’d been doing it for decades.

    So, invisibility, check – I identify with that one.


    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.