Years ago, I unexpectedly found myself responsible for a table of about 8 customers at an Advisory Board dinner. If you aren’t familiar with Ad Boards, they are exactly as they sound – a group of people brought together for the purpose of advising you. Ours usually lasted a day and a half and were typically held in 4 star hotels. Seems like this one was at a W. I’d been invited to the meeting to lead a discussion on some patient education materials my company had developed. Earlier in the day I’d done so and as we headed into the hotel ballroom for dinner, I was relieved my obligations were over. Or so I thought. No one bothered to mention until right before we sat down that oh, by the way, I would be the only one from my company at my table and it would be my great fortune to play the role of host. Yikes! My palms immediately began to sweat.
You see, I don’t have an affinity for small talk. Which is to say I pretty much suck at it. Small talk seems pointless. I mean, life is short. If you’re going to have a conversation, well then, have one. Why waste oxygen talking about the weather? Or the price of gas in Muskeegee? Sure, it’s polite to inquire about one’s job and the ages of one’s kids, but time is ticking, so why not get right down to the good stuff? Like one’s most embarrassing moment. Or the thing one prays one’s significant other never finds out. I’m just saying I’m not afraid to ask. Something to think about before you plop down beside me on an airplane and interrupt my novel.
So I wiped my sweaty hands on my dry clean only suit, heaped my plate at the buffet and made my way over to table 5 to play hostess for the evening. One by one, guests joined me; 2 doctors, 2 pharmacists, and 4 nurses, and after everyone was seated and the wine poured, I looked up from my baked chicken to discover all eyes on me. I put down my fork, wiped my mouth with my napkin and tried to say something introductory. Something small talk-ish. I opened my mouth fully intending to say, “Hi everyone. Glad you could all join us this evening. Shall we go around the table and introduce ourselves?” Truly. That was my plan. And then I’d ask, “What do you think about the meeting so far?” and scarf down my food while everyone else talked.
But that’s not what happened. Instead my brain hijacked my professional intentions and my mouth produced something very close to the following:
“So. None of us really know each other and we will likely never meet again. Feels like the perfect place to get that thing off your chest. You know, that thing you really don’t want anyone to know but you really need to tell.”
Eyes widened. Someone giggled. There was a decade-long pause during which I thought, you’ve really stepped in it this time, sister, and then a lady sitting next to me took a big ole swig of wine and said, “my son is turning himself into a pin cushion. He’s got 10 body piercings so far and he just did a nipple. I love him but I can’t hardly talk to him without laughing. He looks so ridiculous, you know?”
And then the floodgates opened.
It was freaking AWESOME. I don’t even remember what anyone said. Except for the mother of the pin cushion. It was just so great to open up the closet and expose all the skeletons. We laughed and groaned and commiserated. One of the doctors racked his brain for something to share. “I’m just too normal,” he shook his head glumly. “That’s OK. Somebody has too be.” And we all roared with laughter.
All of the other tables kept sneaking glances. They couldn’t get over how much fun we were having. Long after everyone else had gone up to their rooms, we were still sitting there, lingering. We didn’t want to leave. We started out strangers and we left there, well, still strangers but a little lighter, as if having tossed a heavy backpack overboard.
A wise friend recently said, “We are only as sick as our secrets.” I believe this, wholeheartedly. Which is why I don’t have secrets. Also because I’m just not good at keeping them and partly as a reaction to growing up in such a dysfunctional family. Putting up a good front was ingrained in me. What other people thought about our family was paramount. I kept all sorts of family secrets – I had to. It was expected. And you know how it made me feel? Ashamed. Damaged. Broken. Less than.
But after I decided to no longer keep those secrets, know how I felt? Empowered. Unencumbered. Lighter. Free.
As an adult I realize you can’t actually control what others think of you. You can try to hide the dark stuff but you will always live in fear of it surfacing. Of someone finding out. It’s actually easier to eradicate the dark stuff than to hide it. To just stop doing the things you’d be horrified if others knew about. But some of our dark stuff is out of our control – it’s not the things we have done but the things others have done to us that we’re ashamed of. We worry what others would think if they knew we were abused or our spouse cheated on us or we were bullied in school or we grew up in foster care. We feel this inexplicable need to protect the people who harmed us by keeping their secrets. We take on their secrets and make them our own. This is unhealthy for both us AND them.
This is the stuff I’ve lost tolerance for as I get older. You don’t want someone to know you’re an alcoholic? Then get sober, no matter what it takes. Don’t tell your child to cover for you. “Daddy’s a deacon at church and it would look bad if others knew he drank. Let’s just keep it in the family. OK?”
Nope. Not doing it. I wonder how many people in our lives would choose to eradicate their dark stuff if we refused to cover for them? Keeping their secret isn’t doing them a favor. It enables their sickness. It helps keep them sick.
Of course, refusing to keep the secret isn’t a walk in the park either. Whether it’s your personally owned secret or one foisted on you second hand, outing it will jeopardize relationships. Some people will judge you. Some people will likely walk away. But are those the kind of people you actually need in your life? I say, good riddance.
Those of you following the blog may recall Jerri’s interview at Caramore Community back in October –the one cut short when she confessed she’d smoked crack the day before. Yep. Not one of her more stellar moments. If you’re new to the blog, you can catch up here.
I’m sort of crushing on Caramore. I know, I know. It can’t possibly be ALL THAT but what I’ve read and observed is truly impressive. Caramore is a structured, residential support program for adults with mental illness that uses a step-up approach to empower independence and community employment. Not sure why this is such a novel approach–but trust me, it is– no one else seems to be doing it. Caramore puts brain disorders in their place; chronic conditions to be managed as you get on with the business of living your life.
At first, participants establish a daily work regimen, 30 hours a week, as employees on Caramore’s janitorial or landscaping work crews which provide services to the community. The janitorial crew, for example, cleans churches, businesses, and homes. Participants live in Caramore apartments where Residential Advisors supervise and help them establish personal goals like sticking to a budget or improving social skills. There are 4 participants to an apartment. Everyone has his/her own bedroom, shares a bath with one other person, and shares the kitchen and den with all housemates. Chores are assigned and everyone contributes to maintaining the living space.
Participants earn minimum wage which is applied to their housing. Disability income goes into a savings account which after several months is enough for a deposit and first month’s rent on an apartment outside the program.
As you progress in the program, there’s gradual lessening of supervision and Caramore helps you secure employment in the community at sponsoring businesses. A HUGE shout out to Lowes, Target, Whole Foods, and UNC for being Caramore employers.
After 3 or more months of steady employment, participants move into community apartments. Many split the cost with housemates they met at Caramore. Slowly, Caramore’s services are reduced and eventually phased out. Eventually, participants “graduate” but can continue to network and get support from other alumnae.
Did I mention Caramore has a 90% success rate?
At first glance, it might appear Jerri doesn’t need this kind of program. After all, she’s already able to live fairly independently. She takes her medicine on her own, does her own shopping, pays bills, and has her own apartment. Still Caramore has a lot to offer. Jerri’s not great with money and spends it all within days of getting payed. Probably as a technique to remain clean (if she doesn’t have any money, she can’t buy drugs) and perhaps as a post-traumatic stress response (if she doesn’t have any money, no one can steal from her.) Caramore could help her work through money issues. Jerri is also ready to get a job but fears losing disability and the possibly of getting sick again. Caramore has experts in disability law and can help navigate this. On her own, she lacks the discipline to get up every morning and go to work. Plus she has a felony on her record and that makes it difficult to even find employment. Lastly, her social skills aren’t great. These are all challenges, Caramore can help address.
After the botched interview back in October, Jacob, the Admissions Director, said typically new admissions have to be clean and sober for 6 months prior, however, he would cut that to 3 months for Jerri and scheduled another interview for January 8th. Jacob has since had a promotion and on the 8th, Jerri met with Blake, the new director. The interview went well – no drama this time – and Blake scheduled a trial visit for Jerri to test drive the program.
That was this past week. Trial visits are supposed to be 5 days but with Martin Luther King day on Monday and the ice storm on Friday, Jerri’s visit lasted only 3. She worked on the janitorial crew mostly vacuuming and complained of backaches daily. She described the other participants as “heavily medicated” and likened the experience to “being in a mental hospital” because Caramore dispenses all medications and you have to take them while they watch. When I pressed for one positive thing about the experience, she said “everyone is really nice to me.” She also felt better about the visit after talking to her Residential Advisor for the week.
Yesterday morning, we sat down with Blake and discussed the visit. He said the 3 days really hadn’t been enough time for Caramore or for Jerri to fully assess whether the program was a good fit. Jerri is concerned she might not be physically able to vacuum for 6 hours a day, 5 days a week. (Ha! Who among us is?) So Blake asked her to do another trial visit, for a full week, starting Monday.
For my part, I’m trying my best to remain objective. To me, Caramore seems like a life-saver. On the other hand, what could possibly be worse than ending the relationship with Telecare (her current mental health provider), letting her apartment go (for which there was a waiting list to get in), and moving all her stuff to Caramore only to receive a call 2 weeks later saying it’s not going to work out? Jerri has said as much. “I want to be sure I can physically do the work before I commit.” She was seriously doubting herself when I picked her up yesterday.
“What will you do, Jerri, if you decide you can’t manage the Caramore program? Just go back to watching TV all day?”
“No. Catherina will take me to Vocational Rehabilitation and I’ll try to get back into work that way.”
She’s got good intentions – I’m just concerned about follow-through. And likelihood of success without more structured support than what Telecare can provide. I know, it’s out of my hands. God, grant me the serenity . . .
Having Jerri in my life has opened my eyes to a whole world of evil that I’d previously been able to pretend didn’t exist. Two weeks ago today, Stan and I took Jerri to buy a scooter. She’d found one for $750. We told her if she saved up half, we’d match it. For two months, she ate at the nearby shelter to save the $200 she normally spends on food for the scooter. She was so proud of herself for saving that money. “I’ve never saved up for anything in my whole life,” she told me. I was proud of her too. I was worried about the ultimate fate of the scooter, worried that she would tire of bringing it into her apartment after riding or that she’d get lazy and forget to put the lock on the tires when she left it in a parking lot and someone would steal it. But we talked about those things and she agreed she had to be vigilant. Ultimately, there are lessons in life that all of us have to experience for ourselves.
What I’d never even considered is that while she was stopped at an intersection waiting for cars to pass, someone would come up behind her, knock her off the scooter, and take it out from under her. That’s exactly what happened on Tuesday afternoon.
I drove over after the robbery to check on Jerri and talk with the police. One of her neighbors had given her a Klononpin to calm her down but Jerri has weird reactions to benzodiazepines and she came off as totally wasted. Its really frustrating to me that Jerri’s first reaction to anything difficult in life is to self-medicate.
While we waited for the police, Jerri said (slurry but no less sincere), “This is a terrible place to live. How can I ever better myself here? I can’t get a job without transportation. I can’t have transportation if anyone can just knock me off a scooter and take it. What am I supposed to do now, Terri? It was really hard saving up that money. I went without food for it. I don’t know if I can do it again. And he was so mean, Terri. He was so mean the way he took it from me and the things he said. How can people be so mean?”
It’s a honest question. I feel a little shell-shocked over the whole incident myself, like an incendiary device has just exploded in my face. I can not understand the pure evil that invades a person’s soul and justifies yanking a scooter out from under a tiny, skinny, white woman with mental illness who is obviously quite poor herself. It fills me with such rage that people can be so mean, so self-centered, so evil, that WE can be so unloving to each other. In my head, I’ve downplayed how dangerous a neighborhood Jerri lives in. I’ve driven around there in my Lexis, by myself, at twilight. I’ve told myself that these people are poor, that doesn’t mean they are evil. But there is a certain desperation that breeds in extreme poverty. One that discounts even the life of other human beings. One that says, I’m going to get mine by whatever means and the end will justify it. I’m reminded how far we have fallen from the world God originally intended.
Later in the week, I had the privilege of sitting next to a distinguished, older gentlemen on a flight back from Albany. He is 68, divorced, and an architect for a prestigious firm that is rebuilding downtown Durham. I was surprised by his age. He is dark-skinned and if I’d had to guess, I would have estimated 55. When I commented on this, he confided that he was quite frankly surprised to still be alive. Both of his parents died young; his father was in his thirties and his mother in her fifties. He saw everyday as a gift. His firm designed the Durham Bulls Park. He lives in a condominium downtown and loves what is happening in Durham. He has lived here since 1971. As we talked about the revitalization of downtown, I mentioned that there are still some areas that are quite dangerous like Liberty Street where my sister lives. His eyes widened and he said, “I have two grown children and I’ve always told them there are some places you never need to go. You just don’t. And Liberty Street is one of them.”
I called Catherina, Jerri’s case worker, and told her what happened. “We need to find Jerri a place to live in a safer neighborhood. She’s too vulnerable here. She’s too easy a target.”
“Well you know she’s on the waiting list for Stuart Heights. That’s actually the best place for her. The other places where she qualifies have had a lot of shootings. I don’t think we want to move her to a place where there are shootings.”
Duh. You think?
“I’ll check with one of my coworkers about other options. She really specializes in housing. Maybe there are some new options I don’t know about.”
In talking to Jerri about it, she raised Caramore as a possibility. The Caramore Community was an option I’d identified not long after Jerri moved to Durham. Its a structured program for people with mental illness which prepares them and transitions them back into the community. As part of the program, you work 30 hours a week, first for Caramore and then eventually you transition to a job in the community with an employer like Lowes, Target, or Whole Foods. When I first investigated Caramore, Jerri was not sold on the option. She was not sure she was physically able to work 30 hours a week. And she wasn’t that stable on her medications. But now the timing seems right. She is mentally and physically healthier than I’ve seen her in years. She has an interest in working. She’s concerned about losing her disability but Caramore has financial advisors that work with members to ensure that doesn’t happen.
Caramore is located in Carrboro about a half hour from Durham. Joining the program would get Jerri out her neighborhood as she would be living on the Caramore campus. Telecare has been an absolute lifesaver from the perspective of getting Jerri stable and keeping her from homelessness. But they seem to be not so great at transitioning their clients to independence. Caramore excels at that and is a logical next step in Jerri’s recovery. Caramore would become her mental health provider from a Medicaid perspective and since Medicaid won’t cover both, we’d have to leave Telecare behind.
So this week, instead of succumbing to depression and wrapping herself up into a tight cocoon of despair like she did when her laptop was stolen, Jerri called and asked me for the phone number for Caramore. She spoke with the Admissions Director and then called me back.
“Would you like a birthday present, Terri?”
“Sure, whatcha got for me?”
“An appointment at Caramore on your birthday at 10 am. Can you take me?”
Jerri once said, “You look at me and see a problem. I’m not a problem—I’m a person!” Ouch. Granted, she wasn’t well at the time and she was really, REALLY angry about me refusing to drop everything and wrap my life around her current crisis. Still. If I’m honest with myself (and most of the time I try to be, unless I’m hormonal, and then I tend to listen to that small but obnoxiously loud inner voice that hollers “You can’t handle the truth!”), she was right. My entire family has treated Jerri as a problem that needs fixing since she was about 14 years old.
But it’s not just Jerri. I have this uncanny ability to spot problems everywhere. It’s as if I’m viewing the entire world through a cracked lens. No matter where I look, there is stuff that needs to be fixed. My mind seems to hone in on that which is broken. I don’t know how I got to be this way, whether it’s innately who I am or a way of thinking learned from my parents. But I do know this. No one wants to hear about problems unless you’re offering solutions. And you need to make sure your conversations are sprinkled with positives or people will avoid you like a friendly raccoon in broad daylight. (Rabies for you city peeps scratching your heads.)
My boss recently reminded me of this. Not about raccoons (although that does sound like a conversation we might have) but about refocusing on the positives.
I’m currently working on the-project-from-hell (literally, that’s what I named the folder where all my project docs get filed) which appears to be totally jinxed, I mean, if anything can go wrong on this project, it will and it has. It’s as if the whole universe is conspiring against me. I’ve known for quite some time my life is harder than everybody else’s :-). But, really? I’ve brought issue after issue, challenge after challenge to my boss’s attention so he reminded me during my semi-annual professional development discussion that what I’m working on is, in fact, STILL an awesome project. It is STILL very worthwhile and something we should be doing as a company. We have made a tremendous amount of progress and it’s important to remember and to celebrate what we’ve accomplished. And we need to make sure upper management hears about the good stuff and not just about what sucks.
The same is true with Jerri. Not that she’s a “project” but like all of us, she is a work in progress. We have both come a long way since she moved here in 2010. It’s been hard. It’s been challenging. It’s been bang-your-head-against-the-wall frustrating. There have been times I thought I’d hyperventilate. Or get in my car, keep on driving, and never look back. But in a weird almost twisted way, its also been rewarding. Like Glinda (Wicked), who can say if I’ve been changed for the better? But I have grown. And I have been changed for good. (Don’t hate me for identifying with Glinda here—remember, Elphaba turns out to be the hero.)
I’m limited. Just look at me – I’m limited
And just look at you. You can do all I couldn’t do, Glinda
So now it’s up to you. For both of us – now it’s up to you…
I’ve heard it said that people come into our lives for a reason
Bringing something we must learn.
And we are led to those who help us most to grow If we let them
And we help them in return.
Well, I don’t know if I believe that’s true
But I know I’m who I am today because I knew you…
I completely understand why many siblings, maybe even most siblings, want nothing to do with brothers and sisters with brain disorders, particularly those who are dual diagnosis. It’s like marriage and growing old. It isn’t for wimps. However, for those of us who have chosen to engage, what we gain personally and spiritually is priceless. All of us who care for people with brain disorders need to refocus every now and then and celebrate even the small stuff.
In the spirit of that, Jerri, Stan, and I are off to see Brave (Groupon) and then dinner at Ruby Tuesday’s. Here’s what I’m celebrating today:
A great theologian :-), Albus Dumbledore, once said:
Happiness can be found in the darkest of times, if one only remembers to turn on the light.
Hope you all join me in turning on the light, whatever the circumstances in which you find yourself today.
Since my sister came back into my life, I’ve had to do some serious mental flossing to remove build-up about mental illness. You see, mental illness doesn’t happen in my family. Nope, it just doesn’t happen to us. We might do some crazy-ass things but we take ownership of them—we are in control. To say that one of us is mentally ill would be to say that person has lost control. And that just doesn’t happen. Nothing happens to us that is not a direct result of choices we make. What others might question as mental illness, we know is simply willfull snubbing of societal norms. No, we don’t have mental illness in my family, by God—we have bad choices and misbehavior!
When I first suggested to Mom there might be more going on with Jerri than your garden variety addiction, she snapped. “Your sister is a drug addict, plain and simple. She could stop using if she really wanted to. She chooses the life she has. Besides, even if there was something else wrong with her, she brought it on herself. You can’t pump that many chemicals into your system without messing up your mind.”
Never mind that there were all kinds of signals long before Jerri ever popped the first pill. For as long as I can remember, she was terrified of the dark, a fear that did not subside with time. She saw people the rest of us didn’t– a woman in a billowy white gown would enter her bedroom at night and sit on her dresser. Jerri slept in a sleeping bag beside my parent’s bed up until she moved out of the house at 16. If they locked their door, she would lie outside pounding on it and crying hysterically. When she was 19, pregnant with her first child, and temporarily staying with my parents, she again pulled out the sleeping bag. This is so obviously not normal and yet, we all turned our heads and went about our daily business as if nothing out of the ordinary was happening.
What exactly is mental illness? The answer is a source of great controversy. Whole books have been written on it. According to the Collins American Dictionary, Mental Illness is “any of various disorders in which a person’s thoughts, emotions, or behavior are so abnormal as to cause suffering to himself, herself, or other people.” I don’t find this definition especially helpful. “Abnormal”, as I’ve already pointed out, is open to interpretation.
The jury is also still out on what causes mental illness. One current thought is there is both a genetic predisposition and an environmental trigger. You may have certain genetic markers common to people who develop a given illness but unless you are exposed to an environmental trigger which could be tragedy, trauma, or just about anything that causes major stress, you may never actually get sick. I don’t know about the predisposition part, but I suspect that everyone, given the right set of circumstances, has the capacity for mental illness.
There also appears to be a link between abnormal levels of some chemicals (serotonin, norepinephrine) in the brain and mental illness. Many psych meds focus on restoring balance to brain chemicals. I’ve yet to find a detailed explanation for how these chemicals become unbalanced to begin with. Again, traumatic events and other stressors are thought to trigger the process.
Certain medical conditions are also linked to specific mental disorders, hypothyroidism, for example, can cause depression and unclear thinking. One of the first things I did after moving Jerri to Durham was to make her an appointment with an internist. Her lab results showed her thyroid wasn’t making enough of the hormones it’s responsible for. When she takes her thyroid medication, there is a noticeable improvement in her mood and her ability to cope with day-to-day life. There are times when I wonder if the thyroid medicine might be the only one she needs. At some point, we will likely test that theory.
Over the years, Jerri has been diagnosed with bipolar disorder, borderline personality disorder, and substance abuse. She believes she really only has depression and that what has appeared to be manic episodes in the past were actually reactions to various medications. Bryce, her psychiatrist, is not big on assigning diagnoses. He says it’s more important to treat the symptoms than it is to give it a name. What I like about Bryce is he tries to keep the number of meds to a minimum and he is not quick to change them. He also won’t prescribe a med just because she wants him too. Before Jerri moved, her psychiatrist changed her meds every single month and basically prescribed whatever Jerri wanted. Not sure what she was thinking given Jerri’s history with substance abuse and the street value of the schedule 5 meds requested. But that’s a topic for another day.
When Jerri talks about her mental illness, she refers to “not being in her right mind”. After the fact, she knows when she has been there but sometimes, during the episode, she will try to convince me otherwise. I’m getting a feel for it now and can recognize the symptoms of not-right-mindedness. One being she will toss objects to see if I catch them to make sure I’m not a hallucination. Others include paranoia, constantly losing things, psycho-dialing me sometimes 12 times in a matter of hours, staying in bed all the time, not answering the phone, lack of interest in appearance, talking to herself.
One of my first breakthroughs in mental flossing came after watching an early episode of Fringe. Peter Bishop makes a powerful observation about his father, Walter, and mental illness. He says (in essence), “I always thought mental illness was something he was doing to us, to Mom and me. But all along it was something being done to him.” Despite what I was taught to believe, Jerri can’t help what is happening to her. She did not choose it. It chose her.
Another mental floss breakthrough came when I attended NAMI‘s (National Association for Mental Illness) Family-to-Family class. This is a 12 week course designed for people with family members recovering from mental illness. This class kept me sane during the months immediately following Jerri’s move to Durham. NAMI defines mental illness as “biological brain disorders that interfere with normal brain chemistry. Genetic factors may create a predisposition in some people, and life stresses may trigger the onset of symptoms.” Given what I’ve learned about the impact of the thyroid and how psych medicines work, there is no question it is biological or that it involves brain chemicals.
Identifying my sister’s illness as a brain disorder helps me approach it differently, more constructively and with less fear.
What I find more helpful than defining mental illness is defining mental health. WHO (the World Health Organization) defines mental health as “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community”. WHO does state that it is more than just the absence of mental disorder, however, based on this definition, I think its entirely possible for a person with a brain disorder to achieve mental health. And this gives me hope.
In order to really be there for someone diagnosed with mental illness, you have to get in your own right mind about it. You have to first examine what you yourself believe. You have to bring your beliefs into alignment with what is currently understood about brain disorders and recognize the person is not at fault. It’s like a swing bridge that was open so the tall ships could sail through and is now swinging back into alignment with the road. Sometimes my bridge swings back open and I have to again realign. But for the most part, I’m happy to say my family-ingrained perspectives have sailed.