I’ve done some soul searching about the blog over the past few days. I’ve been asking myself, “Why did you start the blog to begin with? What was your intent?”
Honestly, I’m not sure at the time I’d completely thought it through. I’d just moved my sister who has bipolar disorder 100 miles across the state so I could help ensure she got the care and support she needed. I was learning a lot about mental illness, stigma, and the challenges of navigating our federal programs and the mental health care system. I was convinced she could be healthier but she was at a place where she just couldn’t do it on her own. I was making mistakes, recovering from them, trying one thing then another. It was a crazy, messed-up time. And in the midst of it all, I thought there must be others like me. There must be others who are trying to figure this out and maybe we can all help each other.
But then I started the blog and it seems more often than not my posts have been for my own benefit. A form of free therapy. You know, getting my thoughts organized, stepping back and trying to view what just occurred more objectively, trying to figure out what the hell happened in my family, getting things off my chest, and just generally recording the journey. Whether this has helped anyone else in the blogosphere, I don’t know.
I’ve thought a lot about the audience I’d like to serve through the blog. My desire is to build a network of followers who care for and about loved ones with mental illness. A number of you follow the blog because you know me or Jerri, you know what a big thing this journey has been for us, and you care. Thank you for that. It means a great deal. You offer a tremendous amount of support to me and I can’t imagine being on this journey without you.
Some of you follow because you have your own struggle with mental illness and my perspective as a family member helps you better understand your own family relationships and challenges. Many of you have your own blogs and are far more experienced at this than I am. Some of you have a huge following. You’ve got this blog thing figured out. I can so learn from you.
And some of you (although I think potentially only a small percentage) follow because, like me, you have a family member, a sibling or a child, who has a mental illness or another disability which affects your family in similar ways. You are actually the ones I theoretically started the blog for and I fear I haven’t delivered a lot of content of value to you.
These are purely my perceptions. They may or may not reflect reality so I’d like to hear from you. Tell me about yourself. What attracts you to the blog (if you are, in fact, attracted) and why do you continue to check in? If you don’t like to publicly comment – no biggee. You can email me at firstname.lastname@example.org.
Over the next few weeks, I’m going to seriously contemplate the mission and vision of Trophydaughter. I plan to develop a mission statement to guide my posts moving forward.
When I started this venture, I had somewhat of a if-you-build-it-they-will-come mentality. Obviously, that’s not the case. After a year and a half of blogging I still have less than 100 followers. Not that this thing was ever about the numbers for me (despite the fact that us trophydaughters are prone to measuring ourselves 🙂 ) but I do want to make a difference so I’d like to increase my readership. I’m also concerned the audience I most want to reach isn’t that active in the blogosphere. Specifically, siblings. Thoughts on this, anyone?
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.
Thanks to Laura at pajarigirls, I’m the proud recipient of a Liebster! (My husband said, “Lobster? Someone gave you a lobster?”) It’s an award that fellow bloggers bestow on “up-and-coming bloggers who have less than 200 followers.” Hey, I’m up-and-coming, who knew? The word ”Liebster” comes from the German language and can mean “sweetest, kindest, nicest, dearest, most beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome.”
Laura said she nominated Trophydaughter “because I want more people to read your words and know they are not alone.” Wow! This really touches me and is something I want too. Laura also said (bless her) that she couldn’t believe I qualified in the “Less than 200 followers” department. You know, me neither, because who doesn’t want to read the rants of a mad sister trying to bring her sibling back to life and rid the world of stigma while teetering, herself, most days on the edge of insanity?
When I first started this blog I thought, “If you write it, they will come.” Doesn’t really work that way so I’m discovering. But I refuse to be a numbers gal. If even one person takes away something of value here, it is enough.
So here are the Liebster rules (because you know us Trophydaughters are all about the rules;-)
1. Thank the person who nominated you. (Check!)
2. Post 11 random facts about yourself
3. Answer the 11 questions asked by the person who nominated you.
4. Pass the award onto 11 other blogs (and notify the bloggers that you nominated them!)
5. Write 11 NEW questions directed toward YOUR nominees.
6. You are not allowed to nominate the blog who nominated your own blog.
7. You paste the award picture into your blog, Google it or steal mine.
11 Random Facts:
1) I just finished Gone Girl by Gillian Flynn. Has definitely earned its spot on the best seller list.
2) My corgie wears TinkleTrousers.
3) The last iPad app I downloaded was Nook.
4) My lab/boxer mix wears Thundershirts.
5) I will always regret never having learned to play the drums. But not enough to actually buy a set and take lessons 🙂
6) I drive one-handed with my left hand at 7:00 on the steering wheel. It’s the only thing I do left-handed. Just trying to get in touch with my inner South Paw, I guess.
7) I’m strongly considering selling the house and moving into a warehouse condo downtown. That or a very tiny house preferably under 1000 sq. ft.
8) I’ve been married for 26 years to the same man and sometimes I dream we’re just still dating. Wonder what Freud would have to say about that.
9) I’m completely and totally addicted to Downton Abbey. I even PURCHASED season 2 to catch up since I couldn’t find it anywhere online for free.
10) Buying TV shows really grates against my moral fiber. Grrr!
11) The last iPhone app I downloaded was Flashlight.
Questions for me to answer:
1.) Does YOUR sister pick on you, too? Nagging and such?
No, not really. I think she got it all out of her system back in grade school.
2.) When was the last time you shoveled poo?
Uh, like 2 days ago and thanks for asking.
3.) What would be the first thing you’d do if you won the lottery?
Quit. My. Job. Yeah, baby!
4.) How YOU doin’? (It’s just not the same without an up-nod and a bad Sopranos accent.)
Eh. I’ve been better . . .
5.) What do you want to be when you grow up?
An author. I want to see my name on the spine of a book. And not written with magic marker.
6.) If you could live anywhere on earth (and take whomever you wanted along), where would it be?
Hmmm. This is a daily conversation at our house as we’re not sure we can afford the US after we retire. We’re toying with Costa Rica where you can still purchase an oceanfront lot for $40,000 and live comfortably on $2400 a month.
7.) What do you admire most about yourself?
My ability to read upside down. Ha! I crack myself up.
8.) What would you most like to change about yourself?
I’m the cowardly Lion. If ever I make it to Emerald City, I’m going to ask the Wizard for courage.
9.) What are you waiting for?
A metal. Or as Stan would say, a chest to pin it on.
10.) Why did you start blogging?
Susan talked me into it.
11.) What is the most-watched movie/DVD in your collection?
Hmm. That’s a hard one. I’m a big fan of watching movies over and over and over. Lord of the Rings, Harry Potter, Anne of Green Gables (so I’m a big fan of kid lit, what about it?), Mama Mia
Questions for my nominees:
1) Why did you start writing a blog?
2) What are you currently reading?
3) How would you describe your singing voice?
4) What gives you the giggles?
5) What’s your favorite movie one-liner?
6) If you could have one do-over, what would it be?
7) What’s your fav Chinese dish?
8) How are you going to change the world?
9) When is the last time you sobbed, truly sobbed?
10) What do you want to be remembered for?
11) Who’s a tough act to follow?
As for nominees, not everyone shares the number of blog followers they have. If this applies to you, please know this nomination does not imply any assumptions on my part. It just means I enjoy your blog and not posting your follower stats makes you fair game 🙂
And the nominees are (in no specific order):
…But She’s Crazy
My Bipolar Bubble
Let us not mince words
The Witty and the Mundane
Narcissism – One Woman’s True Story of Marriage to a Narcissist
This blog has been somewhat of a grand experiment. I’d been thinking about writing a memoir about, you guessed it, sisterhood and sanity and my BFF, Susan, who is a marketing wiz, said “you’ve got to do a blog.”
“But I’m not ready for that kind of commitment,” I said.
“Publishers are looking for writers who already have a following. If you can demonstrate there’s an audience for what you write, you’re less of a risk as a new writer. It’s all about the marketing, you know. Even if you decide to self-publish, which is perfectly acceptable these days, social media and blogging is a way to get feedback and gain a better understanding of your readers.”
“I just don’t have time for it,” I said.
“You don’t have to write every day. Just pick a schedule, maybe once a week, and stick with it.”
“The LAST thing I need in my life is more responsibility,” I said.
“You love to write. You need to write. Just do it.”
So I thought about it. For months, I toyed with the idea. In addition to what Susan said, there were other great reasons for blogging.
My writing life needed some structure. Blogging was a way to introduce that. If I made a commitment to post once a week, I knew some of you would hold me accountable.
Blogging can be cathartic. Particularly when you maintain some anonymity. It helps work through my emotions and evaluate what’s helpful and what’s hurtful in my relationship with Jerri. I replay things in my head and discover where I went wrong. I try to take the confusing bits and piece them into something that makes sense. Sometimes hitting the “publish” button is super scary but sometimes it feels incredibly liberating. And I get to rant. There really is nothing better than a good rant.
Blogging is also a great way to connect with people who have similar life experiences. I hoped to meet others supporting family members with brain disorders and I have. It’s been amazing. I’ve been moved by your stories. I’ve felt less alone. I’ve embraced your advice. I’ve learned from you.
So I might not be the Bloggess and I might not have been Freshly Pressed, at least not yet, I still have hopes, but I HAVE had readers from over 40 countries including the UK, France, Canada, Australia, New Zealand, Jordan, South Africa, Japan, Malaysia, Germany, Pakistan, Saudi Arabia, Sri Lanka, and Bangladesh. And that has to be one of the most awesome achievements I never set out to achieve.
So thank you for reading. Thank you for caring. And thank you for commenting. The experiment continues.
First of all, what’s up with this line? It’s 3:00 on a Friday. This is exactly what I was hoping to avoid by voting early.
Second, you’re not really 97 years old, are you? Seriously? You don’t look a day over 74. And I’m not just saying that. I’d really like to know your secret. How you’ve managed to age so well without letting an old person take over your body. I mean just look at you in your Levi’s and your untucked Timberland flannel shirt under your Northface parka. You could almost be my nephew. Except the band of your boxers isn’t hanging out. Thank God for that.
Your confidence that I, too, will one day get to 97 is flattering. What I, uh, actually said was how did YOU get there but I appreciate the sentiment. I’ve never really had a desire to see 97, at least not in my mirror, but if I could do it as you have and retain the ability to drive myself around and stand in 30 minute lines with only the assistance of a cane, well that changes things. If I could get there with my memory intact as you have, with a sharp mind and a vested interest in what’s happening in our country, well, somehow 97 looks a lot less scary.
I hate it that we were so rudely interrupted by my actual turn to vote. I’d almost forgotten why I was here to begin with.You were telling me about submarine training in NY, a stopover in route to WWII, where you knew you would either have to kill or be killed. My head was still back in 1944, with you, your friend Rob, Ilene, and your future bride, Anita at the Stage Door Canteen in the Broadway Theatre District with Jimmy Durante and Frank Sinatra singing That Old Black Magic as you swayed together on the dance floor. How cool is it that God intervened and you lost the coin toss and got to walk Anita home that night instead of Ilene who had “all the right equipment”? Bet Rob would be jealous of your 67 years of marriage – it just goes to show we don’t always know what’s best for us.
Did you see the way that volunteer looked at me when it was my turn? All sympathetic like you bending my ear was some form of torture and wasn’t it nice of me to humor you but now it’s time to move along little missy and stop holding up the line. That’s ageism, BTW. You probably get that a lot. It seems rampant in our society and it just makes me mad.
You know I wanted to hear the rest of your story. You left me hanging. Like did Rob make it through the war? And what happened to Ilene? Did they get together? And what has this past year been like for you, now that Anita is gone?
Also, did you ever have the chance to see Tallulah Bankhead there at the Stage Door? AmericainWWII,com says she used to play the Canteen. She also had about 30 seconds in the 1943 movie. She’s a distant relative of mine – it would have been a hoot to have met her.
So I looked for you afterward, after I fed my ballot into the machine. I wanted to invite you to Starbucks for a coffee but, sigh, you were already gone. I guess you have to live efficiently at your age. I bet you never waste a second.
I wanted to ask you about the changes you’ve seen in the almost century you’ve lived on the planet. Did people seem less divided? I mean, clearly, you and I are on opposite sides of the ballot based on that slip of blue paper in your hand, and yet you haven’t approached me as someone to be converted to your way of thought. Our country seems so divided these days and the contempt we feel for people with different political views borderlines on hate. There’s news of actual fights breaking out at voting sites in some parts of the country. Bet that didn’t happen in your day. Maybe you’ve been so congenial because you assume we share the same views. Or maybe you just don’t care. Maybe you’ve recognized during your 97 years that diversity of thought is what makes America great, that the freedom to hold a different opinion is one of the awesome things about this nation. Maybe you are just from a generation that valued civility. Whatever the reason, it makes me want to know you more. To actually sit down and hear your political views and understand why you believe as you do. Not for the purpose of converting you. Simply to understand. We could totally hang out, you and me. We could disagree without hating each other. I’m pretty sure of it.
So, man-behind-me, here’s to you. I hope we cross paths again soon. You’ve made an impression. You totally rock!
Seventeen years ago when I began working for my employer, I provided analytic support for disease education program development. Migraine was my first assignment. I didn’t know a lot about migraine so I did what I always do, I read everything about it I could get my hands. I learned about auras, visual or sensory disturbances that can sometimes precede an attack. Like most people, I get the occasional headache but these were never severe or debilitating pain which is what I had always associated with migraine. But as I read, I began thinking that maybe the fuzzy vision I get sometimes before a headache was actually aura. Come to think of it, weren’t most of my headaches one sided, throbbing pain? I became convinced I had migraines.
Then I was reassigned to the asthma team. Again, I didn’t know much about asthma so I googled and read everything I could find. I began to wonder if I didn’t have asthma. Afterall, there was that nagging dry cough that I could never seem to get rid of, often the primary symptom for adults diagnosed with asthma. And certain times of the year, I did feel like it was hard to breath. And then running from one end of the Dallas airport to the other when the plane train was out of service, I experienced what I can only describe as a full-blown asthma attack. I was coughing and couldn’t stop, couldn’t catch my breath, tears running down my face, strangers asking me if I was okay. Somehow, at forty-something, I was certain I had managed to develop asthma.
So when my employer wanted to reassign me to the oncology team, I politely declined. Momma may have raised a whacked out hypochondriac but she didn’t raise no fool.
I’m not the only one who is highly susceptible to the power of suggestion. We can actually prime our minds to respond in certain ways. There’s an excellent illustration of this in a CrossPointe podcast I listened to recently. In it, Steve shares a psychosocial study conducted at MIT where college students were randomly divided into three groups and asked to unscramble words in a given amount of time. They thought they were being tested on their ability to do word puzzles. Not the case. What they didn’t know is the words they were asked to unscramble had a theme to them. The words in Group 1’s puzzles were things like patient, polite and careful. The words in Group 2’s puzzle were things like impatient, rude, intrusive and interrupt. Group 3 was the control group and they were given random words to unscramble. After completing the puzzles, the students were told to turn them in to a professor. But when they got to his desk, a faux student was already there asking a bunch of questions about the exercise and acting like he didn’t understand. Students from the control group waited about 7 or 8 minutes before interrupting and saying, “Hey, just want to turn in my paper.” Students from the “patient” group waited 10-11 minutes before interrupting. Students from the “inpatient” group interrupted at only 4 minutes. Hmmmm. Interesting.
I thought of this when in a recent conversation, Jerri said, “The reason I always give you my money when I get my check is because I’ve always thought I can’t be trusted not to blow it. But I’m not so sure that’s the case. I mean I hear a voice in my head that tells me that and now I’m starting to think that its Mom’s voice and I don’t have to believe it.”
Suffice it to say, Jerri is thinking more clearly these days than she has in the past several years. I think she’s right. Mom has said a lot of negative and destructive things to Jerri for decades. In regard to money, I’ve heard her tell Jerri she’ll just blow anything she gets. I can’t stress enough how important it is NOT to embrace everything people say to you about you. Or even all the things you say about you to yourself. We all live out what we believe about ourselves. So choose very carefully what you believe. And give yourself a lot of grace. Because life is hard and we all mess up. That doesn’t mean we ARE messed up.
BTW, the conversation with Jerri also led to a discussion about what it means to “hear” voices and whether schizophrenics actually audibly hear voices or like the rest of us, the voices are just the random thoughts that pop in our head. So I, uh, read up on it and, this is interesting, when schizophrenics hear voices, the part of the brain that lights up in a scan is the center that processes external sounds. So to them, it is an actual audible voice. Also at NPR.org, I found this fascinating albeit entirely creepy simulation of what a schizophrenic experiences that was developed by Janssen Pharmaceutica. After watching, I wanted to hug the man talking to himself on the park bench in DC who I passed on my way to dinner. How completely horrific to be endlessly bombarded with destructive voices. Warning: this video is not for the faint-hearted.
So this is just a reminder to be careful what you invite into your brain. Our minds are more absorbent than the leading brand.
There’s an interesting new show on Monday nights (10 pm ET) on TNT. Perception stars Eric McCormack (of Will and Grace fame) as Dr. Daniel Pierce, a neuroscience professor with paranoid schizophrenia who works with the FBI to help solve complex cases. His hallucinations actually help him discover the truth as they reveal connections that his conscious mind hasn’t yet processed. If you’ve ever worked through a real life problem in a dream and woken up with the answer, this doesn’t seem all that far-fetched.
I’m always fascinated by TV series and movies that feature characters with brain disorders. Monk and As Good As It Gets have lead characters with OCD and based on my experience, give a pretty accurate portrayal of the impact this disorder can have. I adored A Beautiful Mind which I assume is reasonably accurate since it’s based on the biography of John Nash. Moving to the opposite end of the “believability” spectrum is Fringe which features a “mad scientist”, Dr. Walter Bishop, who suffers from a unidentified brain disorder which, we learn, is likely a result of a lobectomy that his former friend and colleague performed (taking the concept of “losing one’s mind” to a whole different level).
One of the things all these stories have in common is the way they endear us (Melvin Udall aside) to the mentally ill. They help us see people with brain disorders not as freaks or homicidal maniacs, but as real people struggling to work and live meaningful lives despite their illness. I believe shows like these may have the power, over time, to help eliminate the stigma associated with mental illness.
On the other hand, it concerns me that Perception leads viewers to believe a person with schizophrenia can stop taking his meds and still be highly functioning. Dr. Pierce refuses to take medications for his schizophrenia, (he views it as a gift) yet he is still able to teach at a University level. Like with most illnesses, I’m sure people who have schizophrenia suffer different degrees of impairment. The few people I know, however, go off the grid when they stop taking their meds. They wind up homeless, muttering incessantly, unable to take even the most basic care of themselves. Of course if Dr. Pierce WAS taking meds, he probably wouldn’t hallucinate and we’d be left with just another murder/suspense drama with a really smart expert consultant not unlike Bones but with less-decayed victims.
Anyway, season 1 of Perception began July 9th and has already been renewed for next year. Episodes (starting with 3) can be watched at TNTdrama by customers of certain TV providers (Charter, AT&T, Dish, DirectTV, Comcast, a few others but NOT Time Warner). All episodes can be purchased at Vudu, Amazon, or iTunes. If you’ve been watching or decide to check it out, let me know what you think. I’d particularly like to hear from those of you with loved ones who have schizophrenia.