You Are Only as Sick as Your Secrets

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.

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Brain on Fire –> Must Read!

20130518-114155.jpgSusannah Cahalen was a 24 year old reporter for the New York Post when she was suddenly and mysteriously struck down with what appeared to be schizophrenia. It began somewhat nebulously with an obsession with bedbugs. It was 2009 and at the time, New York City was “awash in bedbug scares.” An exterminator told Susannah her apartment was bug free but she was so convinced of infestation that she shelled out an exorbitant amount to fumigate. She later learned that bug obsession can be a sign of psychosis called parasitosis or Ekbom syndrome.

As her illness progressed, she suffered seizures, paranoia, numbness and tingling on the left side of her body, wild mood swings, dizziness, nausea, flu-like symptoms, insomnia, loss of appetite, delusional thinking, hallucinations, and catatonia. She had out-of-body experiences where she could see herself as if floating above her own body. She was convinced that her dad was an imposter, even believed at one point that he had murdered his wife. For a month, she was hospitalized and completely out of her head. She has practically no memory of this time. A whole month of her life gone. Just like that.

A multitude of doctors struggled to diagnose her. They suspected alcohol withdrawal, mononucleosis, bipolar disorder, schizophrenia, postictal psychosis (psychosis following seizure), schizoaffective disorder. Then, a million dollars later, finally, FINALLY, the amazing Dr. Souhel Najjar, a neurologist, neuro-pathologist, and epileptologist discovered the true nature of her illness. Her blood work and spinal fluid came back positive for rare antibodies called anti-N-methyl-D-aspartic acid receptor. Her brain was inflamed; she had anti-NMDAR encephalitis. The NMDA receptors in the frontal lobe, responsible for cognitive reasoning, and the limbic system, or the emotional center of the brain, were under assault by her immune system. Her body was attacking her brain.

Brain on Fire: My Month of Madness is Susannah’s memoir about her terrifying experience. And I couldn’t put the book down. Susannah was the 217th person worldwide to be diagnosed with anti-NMDA receptor encephalitis since 2007 when a neuro-oncologist, Dr. Josep Dalmau designed two tests that swiftly and accurately diagnose the disease.

“Though researchers are far from fully understanding how NMDA receptors (and their corresponding neurons) affect and alter behavior, its clear that when they are compromised, the outcome can be disastrous, even deadly. Still a few experiments have offered up clues as to their importance. Decrease NMDA receptors by, say, 40 percent and you get psychosis; decrease by 70 percent and you have catatonia.”

To me, one of the most profound things about this memoir is how concretely it demonstrates that what we define as mental illness is, in fact, a symptom of a physical malfunction in the brain. Mental illness is NOT the illness. It’s a symptom of the illness which is in fact biological and possibly reversible. And that gives us all a tremendous amount of hope for future treatment. Susannah was cured. CURED. Once treated, 75% of patients with anti-NMDA receptor encephalitis fully recover, 20% remain permanently disabled, and 4% die. As Susannah says in her book:

“It just begs the question. If it took so long for one of the best hospitals to get to this step, how many people were going untreated, diagnosed with a mental illness, or condemned to a life in a nursing home or psychiatric ward?”

As I read, I thought of K, who I met in NAMI’s Family-to-Family class. Like me, K was attending the class because her sister was diagnosed with mental illness. Her sister had a breakdown in college and had been diagnosed with schizophrenia. Given that the median age for anti-NMDA receptor encephalitis is 20, the memoir made me question K’s sister’s diagnosis. I also thought about Jerri’s neighbor, C, also diagnosed with schizophrenia who is constantly in and out of the hospital. She, too, is obsessed with bedbugs and plagued with paranoia and delusional thinking. C was also first diagnosed while in college.

Many of the patients being diagnosed with anti-NMDA receptor encephalitis are children. The disease presents differently in kids and they are often misdiagnosed with autism. Researchers believe a percentage, albeit a small one, of people who have been diagnosed with schizophrenia or autism, are actually suffering from an autoimmune disease. Our understanding of these two brain disorders will likely gain the most from NMDA receptor research and in fact, just this week, I ran across this news item Hypertension Drug Works for Schizophrenia that describes a study where 20 patients with schizophrenia who took sodium nitroprusside, an antihypertensive medication, saw most of their symptoms diminish within 4 hours. There is pre-clinical evidence that suggests sodium nitroprusside modulates the activity of N-methyl-D-aspartate (NMDA) glutamate receptors.

The other thing that struck me as I read Brain on Fire is the huge role family played in Susannah’s diagnosis and recovery. Her parents did not label her “crazy” and refuse to have anything else to do with her. They stuck by her all the way, showing up at the hospital everyday, demanding that the healthcare system figure out her illness. Without their support, Susannah would likely have died or been institutionalized. Family members, you have no idea how important your support may be to recovery. Stick with it. This is God’s work we do.

You can read more about Susannah’s experience in her New York Post article, My Mysterious Lost Month of Madness and of course, Brain on Fire. I can’t promote this memoir enough as the information contained within could very well save someone’s life. Please feel free to share this post or spread the word about this memoir through all your favorite social media channels.

[Image source: Simon & Schuster]


Brain Training, Ruzzle, and CET

20130511-112031.jpgThe Zipper Girls (besties and participants in the annual Girls Adventure Weekend) introduced me to Ruzzle on our last trip. Ruzzle is a word-search app for all your i-technology. I can waste spend literally hours playing against myself, the Zipper Girls, and complete strangers. Whenever Stan hears the Ruzzle ten second count-down (each game is timed), he says, “Again? Really?” But when the term “addiction” gets tossed around, I just put on my smug face and say, “Researchers have shown that elderly adults who engage in mentally stimulating activities are less likely to develop dementia.” Is there even such a thing as RA? (Hello, my name is Trophydaughter, and I’m a Ruzzleaddict.) Yep, classifying my Ruzzle time as mental exercise let’s me engage guilt-free.

Seriously, I worry about dementia. That is, when I’m not worrying about the economy, the puffy circles under my eyes, the devaluation of the dollar, how fat I actually look, whether or not I need to own gold, the overall health of our nation, my job, my husband’s job, how outdated my house is, my sister’s health, the deer eating my yard, our healthcare system, and the ultimate fate of social security. When my grandmother died, she didn’t know who I was. The last time I visited her at the retirement community, she said, “Why are you here? Will you please stop following me?” My dad has also had some inexplicable cognitive episodes. Once he was angry with Mom for a week for stealing $20 from his top dresser drawer. Mom said he’d never even kept money in his dresser drawer.

I’ve also noticed some inexplicable cognitive issues with my sister since re-entry into her life. She can’t keep up with her stuff. She is constantly “losing” things, leaving stuff in my car, misplacing her apartment keys. She struggles with memory (as do I) but she will tell me something one day and when I bring it up again, say, “I don’t know why I told you that. That never really happened.” She will chalk a mistake up to a “life lesson” and then repeat the same mistake in a month or two as if she’s completely forgotten what happened the last time. Recently, she allowed a new friend to spend the night at her apartment and woke up to find the friend gone along with her new Nexxus tablet (which she’d saved for for months). Previously, when she’s allowed friends to stay over, they’ve stolen medication, clothing, and food from her. So why does she keep doing it? She will call me 3 or 4 times a day to tell me something because “If I don’t tell you right this minute, I won’t remember it later.” I do this too at times but I’m juggling a LOT of stuff. Which is not the case for Jerri.

She complains about her ability to concentrate. While I tend to tuck these comments away in the “How can I convince Terri I really do need Adderall?” file, I know Jerri truly believes her ability to focus has diminished significantly. She also took an online Autism test recently and scored in the “moderate” range. I’ve observed her awkwardness in many social situations – she doesn’t always pick up on visual cues and she goes down inappropriate conversation paths at times.

It has been challenging to discern what is illness vs. cognitive impairment from medication vs. this mysterious, unnamed “something else.” Just yesterday Jerri said to me, “I’ll never be the person I was before. There’s been too much brain damage.” I refuse to accept this.

user:Looie496 created file, US National Institutes of Health, National Institute on Aging created original / Foter.com / Public Domain Mark 1.0

The brain is an amazing organ and has the natural ability to repair itself which is called neuroplasticity. Neurons, or nerve cells, are the basic building blocks of the central nervous system which includes the brain. The connections between nerve cells, called synapses, allow information, in the form of nerve impulses, to travel from one neuron to the next. The human brain is made up of trillions of synapses. Its this network that allows us to feel, behave, and think. The more connections in your brain, the greater your cognitive function. When connections are broken, it impacts cognitive ability. Connections that are used regularly become stronger. Connections that aren’t used eventually get eliminated through a natural “pruning” process. “Use it or lose it” is actually a fact when it comes to connections in your brain. Drug use and excessive alcohol consumption can cause connections to deteriorate or break as can exposure to some heavy metals and pesticides, and brain trauma. But because of neuroplasticity, broken connections can sometimes be restored.

Given all this, I was enthralled by an article about CET, Cognitive Enhancement Therapy (Improving Cognition in Schizophrenia) in the Spring edition of the NAMI advocate. Per the article:

Many individuals with schizophrenia and related disorders exhibit signs of impaired cognition: they have problems paying attention, remembering, solving problems, and making decisions. Brain-imaging studies have revealed that individuals with schizophrenia show reduced activity in the prefrontal cortex, precisely the area of the brain involved in attention, working memory, and judgement.

Wow, this sounded like Jerri so my first question, since she doesn’t have a diagnosis of schizophrenia, was what are “related disorders”? Turns out that a study funded by the National Institute of Mental Health (NIMH) was just published on February 28, 2013 (Lancet, Identification of Risk Loci with Shared Effects on Five Major Disorders: A Genome-wide Analysis) that identifies specific gene associations between schizophrenia, bipolar disorder, ADHD, depression, and autism. This so fits what I’ve observed in my own immediate family where besides Jerri’s bipolar disorder, others have been diagnosed with depression, ADHD, and mild forms of autism.

But back to CET. CET involves structured activities that exercise the brain and mind. CET Cleveland is the first CET program to be established outside of academia and is currently only available at 21 sites in 10 states, however, new sites are in development in other states and YAY!!!, North Carolina is one of them. (Still trying to track down the location of the site and when the program will be up and running.) The program requires one 3.5 hr session per week for 48 weeks. Each session involves 3 components: computer-based exercises, group-based interactions, and one-on-one coaching sessions. Complete brochure in PDF format is available here. Participants are able to improve overall cognitive functioning by strengthening and developing new neural connections. Through group-based interactions and coaching, they are able to increase their understanding of how society and the workplace function. Most graduates of the program continue to improve and go on to enroll in school, work, or volunteer. To me, CET is a missing link for my sister in her recovery. This is definitely another opportunity Jerri and I will be keeping our eyes on as CET becomes more widely available. Learn more about it at cetcleveland.org.


Second Chance for Non-Violent Offenders

When my sister, Jerri, was 29, she broke into Mom and Dad’s house and stole a TV which, as the story goes, she sold for drugs. Mom reported the theft. Jerri was arrested for larceny, convicted, and received a suspended sentence and probation. The felony conviction can be verified as the state of North Carolina considers this a matter of public record and anyone can Google it for free. Which, BTW, I have because this being my family, one can never be too sure where the facts end and the fiction begins.

Jerri’s the one who says it was a TV. I find that hard to believe. The crime for which she was convicted was “larceny, amount in excess of $200.” Were 14″ TVs even worth $200 twenty years ago?  Because I sure don’t see her hauling the 27″ family job with built-in cabinet out of the house by herself. We’re talking pre-flat screen. That baby weighed about as much as a baby elephant. Even Jerri admits the details are a bit murky. A head injury, ECT treatments, drugs, and mental illness have all taken a toll on her memory. Rest in peace, little brain cells. The truth has likely died with you.

The episode happened during a time when the folks were in denial about Jerri’s mental illness. Jerri wasn’t getting treatment and was self-medicating. It’s likely that had she been effectively treated, she’d never have committed this crime. The same can be said for so many offenders, many in our prisons instead of hospitals where they might actually get help. Some of you have also shared your stories of felony convictions directly related to mental illness here at the blog.

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So I’m hoping what I’m about to share is really good, potentially life-changing news. North Carolina, and a handful of other states, have just passed a new law, effective December 1, 2012, that allows for expunction of first-time nonviolent misdemeanors and low-level felonies 15 years after completion of an individual’s sentence. Expunction means your record would be cleared. Background checks will reveal nothing about your crime. It’s a clean slate, a second chance. Thanks to Lynn at The Good Will Hunting Paralegal for bringing this to Jerri’s attention.

There is a form that must be completed and submitted to the court of clerk in the county in which the offense originally occurred. There is also a $175 fee but those who are indigent can get the fee waived by filing a separate petition. The details and forms can be found in the basic guide provided at the NC Second Chance Alliance site. The NC Second Chance Alliance is a statewide alliance of advocacy organizations, service providers, faith-based organizations, community leaders and interested citizens that have come together to achieve the safe and successful reintegration of adults and juveniles with criminal records by promoting policies that remove barriers to productive citizenship.

At the time my parents filed charges against Jerri, I was actually supportive of the action. The theft wasn’t Jerri’s first time breaking the law but she’d never been charged before because my parents had worked diligently to keep things out of the system. This drove me nuts as a teenager. I did not understand Jerri was ill. I thought she was choosing to make our lives hell. Mom said Jerri was hanging out with the wrong crowd. They were a bad influence. She was acting out to get even with Mom. And I thought my parents sucked at parenting. I mean, how was Jerri supposed to learn right from wrong if Mom and Dad were always bailing her out? If she never got to experience the consequences of her actions? Knowing mental illness was at play has completely changed my perspective.

People dealing with mental illness sometimes do things they would never do in their right minds. I understand that now. I also understand how a felony haunts you for the rest of your life. In North Carolina, 92% of employers conduct criminal background checks and applicants with criminal records are 50% less likely to receive a call back. Jerri hasn’t worked in over 15 years. And as much as I’ve encouraged her to apply, there’s a part of me that acknowledges how unlikely she is to be hired. Most applications ask if you’ve ever committed a felony. And as I’ve mentioned, its a quick and easy Internet search to find out. Even housing applications ask. Jerri was recently denied housing in a safer community because of a felony she committed OVER 20 YEARS AGO. For stealing from her parents. Okay, so that doesn’t make it any less wrong, but its not like she held up a bank. Or a 7-Eleven. There are also more than 900 state and federal laws that deny North Carolinians a wide range of privileges and rights based on a criminal record. For example, the right to vote.

I’m very excited about this opportunity for Jerri to potentially clear her record. We’re about to initiate the process. I’ll keep you posted . . .

Photo credit: anjan58 / Foter.com / CC BY-NC-ND