The 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fat I actually look, whether or not I need to own gold, the overall health of our nation, my job, my husband’s job, how outdated my house is, my sister’s health, the deer eating my yard, our healthcare system, and the ultimate fate of social security.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.
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.
This week, the lead headline in my LinkedIn Today news blast was Why Weirdos Outperform Normals. The banner across the top boasted ‘Top Content, Tailored for You’. Thanks for that, LinkedIn. Good to know you scanned my profile and this is the story you came up with.
So I read it – with a title like that I practically had too – and I was both intrigued and repulsed all at the same time. The author named four extremely successful business people and factors that differentiated them as “weird”. You know. Things like “wants his daughters to be lesbians and drug addicts.” Wait. What? That got me pretty fired up – what kind of freaking idiot parent would EVER wish addiction on his daughters – and I followed the associated link over to a blog entry by James Altucher called I Want My Kids to be Drug Addicts. In it, he tells the story of his kid’s babysitter, Lynn McKay, who overcame an addiction to Ecstasy, wrote a book, wound up on Oprah, traveled the world encouraging other recovering addicts, and then started a gluten-free bakery to the Stars. As you can imagine, it was tweeted over 100 times and at last count, there were 53 comments.
One commenter wrote, “Very interesting and inspiring. We need darkness to see light.”
Lynn McKay, responding to another commenter, said:
Every day is a choice, will I take responsibility for my life, my happiness, my choices, etc. or will I lay blame to my past, my limitations, and clutch my misery like a comfy old blanket? Sometimes when you dig deep you realize that you like the misery, the known, the old ways of acting, doing, and being. It is the light that truly scares the shit out of us.
There is a lot of darkness in life. There is darkness around us and there is darkness inside us. I understand what Lynn is saying – sometimes there is so much darkness, we get comfortable with it. It feels like a friend. The light tries to break through and we close the curtains and put on our sun glasses. As if its the light that’s going to hurt us.
Jerri reminded me of this just yesterday when she brought up a particularly dark moment from our past.
When we were teenagers, she brought home a stray dog, a German Shepherd mix, and named her Chelsea. Jerri has always had a soft spot for animals and was forever bringing home the lost, the injured, and the unwanted. Chelsea was a beautiful, warm-hearted dog and not too long after she came to live with us, our family moved from a house on a dirt road in a very rural area to a house in another town on a busy highway. Dad put up a fence around the backyard but Chelsea was a jumper. She liked to hang out in the neighbor’s yard, terrorizing her cats, and after several calls and said neighbor’s husband threatening to get out his shotgun, Mom began confining Chelsea to the garage. We had other dogs at the time, all of them house dogs but seems like Chelsea didn’t play well with others.
At the time Chelsea was sentenced to life in garage, Jerri was 15. She hadn’t adjusted very well to the move, she’d finally reached her limit with Mom’s constant criticism and had begun talking back, and she’d started dabbling in drugs. Chelsea was Jerri’s responsibility and in the midst of her own emotional chaos, she’d forget to feed the dog. One day, after she’d forgotten yet again, Mom took Chelsea to the vet and had her euthanized. Just like that. She could have taken Chelsea to the pound. She could have put an ad in the paper and tried to find her another home. But no. Mom had a healthy dog, in the prime of her life, killed. And after it was done, she told us.
I can still hear Mom trying to justify her actions. “She was locked up in the garage all the time anyway. It was no life for a dog.” Yeah, but it was, at least, LIFE. I can still feel the horror of that moment. I can still see Jerri’s face as she processed what Mom had done. Her outrage and utter despair.
Years later, Mom admitted, in so many words, that she regretted killing Chelsea. That she was so angry with Jerri for all the trouble she was causing, for making her life hell by refusing to be a perfect daughter and positive reflection on her stellar parenting skills, that she used Chelsea to lash out. That is one scary, vengeful streak. What I suspect is, in that moment, when the darkness was rising, when Mom could have fought it, instead she succumbed and carried out a terrible act that could never be undone.
Ok, so we’ve all felt this, haven’t we? The moments when the darkness creeps in, lurks in the recesses and waits for the perfect moment to rear its ugly head. It starts as a whisper, encouraging you to do that thing that you can never take back, that thing that will destroy you or someone around you, or both. It gets louder, building within you, driving you to the edge of the cliff. I’ll admit it. I’ve experienced it, most often at work when I suspect some of the decisions are being made, at worst, by flying monkeys, or at best, by the senior leadership team passing around a Magic Eight Ball. Thank God, I’ve never succumbed to pressing send on those emails to the CEO.
Most of the time, I recognize when the dark tide’s rising before I drown in it. I ask myself, if you do this, what will be the consequences today? Next week? Long term? I think of my life as a story. If I do this thing, how will it change my story? Will it make me the villain? Because I want to be the heroine. The light shines through the darkness. I come to my senses. I recognize the destructiveness of the contemplated action. I take a deep breath and make a course correction. The world is safe (at least from me) for another day.
You do have to experience darkness to fully appreciate light. I’ve experienced enough of it to know that I can’t overcome darkness on my own. It is too much for me. Darkness is relentless. It is too clever and too strong. But here’s something from John’s gospel I hold onto:
The Light shines in the darkness and the darkness has not overcome it.
Remember ABC’s video series “Our week in 3 words”? Years ago, my friend Susan shared one that included a dog with a sign around his neck and his week in 3 words was “I was rescued.” If I had to sum up my life in 3 words, I would just lift that sign from around that dog’s neck and put it around my own. Jesus rescues me from the darkness every day of my life – the darkness within and the darkness without.
Darkness has existed from the beginning. It is always with us. But the good news, on Easter Sunday, is it cannot overcome the Light.
Sometimes I wish I could lose my mind. Seriously, like unscrew the top of my head, take out my mind and put it somewhere, the back of my closet or maybe the bottom of the laundry hamper, some place where it would never occur to me to look for it. Just so I could have a few blessed hours of peace from the incessant chatter going on inside it. I don’t know if this is normal. I suspect that it is – that everyone has these ongoing conversations with their Self. But as I’ve mentioned before, my Self is not a very nice person, in fact, she can be somewhat of a bully, always slathering on the guilt and beating up on me. Frankly, I’m sick of it.
Here’s what’s currently playing inside my head.
[Me] I’m disappointed about Jerri’s decision not to enter Caramore’s program.No, it’s more than that. I’m disappointed in Jerri. I can’t figure out if she really isn’t physically/mentally able to work, just doesn’t believe in herself, or is flat-out lazy. No one is going to hand her a better life on a platter. She’s going to have to work for it. If she’s not willing to work for it, then nothing will ever change for her.
[Self] Stop judging her! She doesn’t believe she can do the physical labor of janitorial work for 30 hours a week or she doesn’t want to. What does it matter? It’s her life.
[Me] Yeah, it’s her life but how can she stand it? How can she bear to live like she does? In a tiny efficiency apartment, in a dangerous section of town, in a building whose occupants are all way more incapacitated by their mental illness than she is. No transportation. Eating 2 meals a day at the local shelter. Few friends. No purpose. Daily routine comprised of sleeping, watching TV, and healthcare visits. Ugh!
[Self] Give the girl a break! She’s improved a lot but she’s still not cured. She said she’d look into vocational rehabilitation and also into Threshold (clubhouse concept). Threshold also helps people recovering from mental illness get part time work. And they have options that are less physically taxing. You could be a little more supportive.
[Me] Jerri SAID she would look into those but so far nothing. It’s been 6 weeks. She’s not serious about it. She’s bored, yeah, but she’s getting by. She really doesn’t have any incentive to change.
[Self] So make her. Give her some incentive.
[Me] Get real. I can’t control my own hair, let alone my sister. Besides I shouldn’t have to bribe her to take the next step. It has to come from inside her. She has to want that for herself.
[Self] Well, you sure don’t have a problem giving her incentives NOT to change. I mean, look at you. Every time she needs transportation, you rework your schedule and put on your chauffeur hat. Wish I had someone to drive me everywhere I want to go. You take her out to eat every time you see her and pay for it. Wish I had someone giving me free meals. You should make yourself less available. Let her experience the inconvenience of her current lifestyle. You’re just enabling her.
[Me] Wait. Didn’t you just say I needed to be more supportive?
No comment from Self. She plays with her iPad.
[Me] Fine. Be that way. But A) You do have someone who drives you and feeds you. That would be me. And B) don’t start with the “enabling” BS. You can’t “enable” mental illness. Besides, you know I don’t drop everything when Jerri needs help. I don’t rearrange stuff. I offer up time that works for me and if it doesn’t work for her, she finds another solution.
[Self] Yeah, but you resent it, don’t you? Every time you do something for her, you resent it. And I know it pisses you off when you order a 99 cent burger and she orders a $5.49 one.
[Me] I don’t resent it every time.
[Self] Me thinks thou dost protest too much.
[Me] Seriously? You’re quoting Shakespeare at me?
[Self] You say you want a better life for her. But what you really want, is a better life for you. You don’t want to be bothered with her. You want to do whatever you want, whenever you want. Well, welcome to adulthood, baby. You aren’t the center of the solar system – you can’t even see it from where you’re standing. There are others in this world who need help.
[Me] Yeah, and I’m ONE OF THEM. Jerri is not a bother. She’s my sister. And if I didn’t work 60 hours a week, travel several times a month, have 3 dogs with various health and behavioral issues, have 2 houses to maintain, and a mother-in-law with cancer, I’d feel a lot more charitable with my time and my money.
[Self] So you say.
About ten years ago (gosh, really? Has it been that long?) I wrote a novel called Learning to Stay. It was never published. After about 7 agents rejected it, I, uh,
locked myself in the bathroom and cried for four days sort of gave up on it. So I have a fragile ego, sue me. (This was before self-publishing became in vogue or this little tale might have had a different, but equally unsatisfying, ending.)
Actually it was more than the rejections. I knew in my heart the book wasn’t ready and I didn’t want the first thing I ever published to be something I’d look back on with embarrassment, like my first real kiss or that time I was having breakfast with Stan’s family and simultaneously exposing myself where three buttons of my flannel nightgown had come undone.
So, where was I? Oh, right. The novel needed major revisions–somewhere along the line I lost control of it and what was supposed to be a secondary storyline hijacked my original plot. (Words can be so hard to corral, they are like wild beasts, well at least mine are, always going off on their own, traipsing off path, chasing down rabbit holes. See, there they go again.)
My original plot, in a nutshell:
When her husband develops OCD, Kali learns in puppy kindergarten everything she needs to know in order to save her marriage.
I really loved my storyline. I still do. If you’ve never been to puppy kindergarten, you should go. Like right now. Whether you have a dog or not. You learn all kinds of life skills in puppy kindergarten (a.k.a. obedience school) that not only work on your four-legged friends, but also your two-legged ones. My novel had everything: humor, gut-wrenching OCD drama, a spunky heroine, romance, and puppies. (And a secondary plot sucking the life out of the primary one, but then I digress.) So I hired a writing coach to help fix it.
Here’s what my writing coach said. “No one wants to read a book about mental illness.” And I’m not paraphrasing. Those were her exact words. And I paid her to tell me this. She also said “Nobody in this day and age cares whether a couple gets divorced” but it was the first thing she said that bugged me the most.
Fast forward to today. What are the romantic themes making the big bucks at the theaters? Vampires, zombies, and mental illness. I’m not kidding. Twilight, Warm Bodies, and Silver Linings Playbook. So pbttttttttttt to my writing coach. You couldn’t have been more wrong.
If you haven’t seen Silver Linings Playbook, I highly recommend it. Realistic to the point of making you uncomfortable–I kept squirming in my seat and glancing over at Stan to see how he was digesting it–there are explosive scenes in public places. Yep, been there and done that. There is bonding over medication history. There is refusal to take medications and delusional thinking. There’s the genetic link. There’s the awkward friend interactions and family who are out of their depth. There is the horrible out-of-character things one does when not in one’s right mind that the whole community remembers and keeps throwing in one’s face. I know I’m not really selling it here but I so appreciate the honesty of the movie. And you feel for these characters. It puts a human face on mental illness. These aren’t crazies. These are real people struggling with the cards they’ve been dealt, making a mess of it, and still finding, yes, a silver lining.
So I might just have to dust off my old novel and wrestle that secondary storyline to its knees. Maybe I was just ahead of my time.