Saturday, December 31, 2016

Star Wars, Bipolar, Carrie Fisher, and Me

It’s been days now since the announcement that her life was in peril, and on December 27th the news was broadcast far and wide: Carrie Fisher, best known for her role as Princess Leia in the Star Wars films, had died of a heart attack at the young age of sixty.

Less than 24 hours later, her famous mother, Debbie Reynolds, followed her in death; after saying she ‘wanted to be with Carrie,’ she reportedly closed her eyes and died of a stroke.

Even Hollywood couldn’t script such a tragedy. My heart aches for the family left behind.

I found out the news of Carrie Fisher’s passing after waking up from a nap. Groggy, I stumbled into the living room and I saw my husband had taken a Princess Leia item from a shelf and placed two candles by it. He didn’t have to say a word. I just knew.

My first response was, “Oh, no.” Then I wept like an inconsolable child.

Six year old me was sobbing for the loss of her childhood icon: at age six I used to make my mother do my hair up in the Leia style every day and I spent all of my playtime running around in a white nightgown my aunt had given me because it vaguely resembled Leia’s dress pulled on over my regular clothing. 

Neighborhood boys and I spent hours escaping from the imagined borders of the Death Star in our back yards. I wanted to be Princess Leia but more than that I wanted to be a Jedi.

To say Star Wars was an obsession for me is understatement. I poured over the thick novelization of the movie at age seven; and I lived in the books, comics, story tapes, and through the toys and merchandise for years of my troubled childhood. Star Wars was a safe world to go to; a world where girls could be strong and people listened to them, unlike in my world of ‘sit down and shut up.’

By the time I was twelve and Return of the Jedi came out, I had grown my hair down past my hips and I wore it in Leia braids every day. Sometimes I’d style it into the long flowing waves with a braid across the top that she wore when she was at the Ewok village. I’d write in “My Jedi Journal” and ponder the quotes from Yoda in them, trying to learn, trying to find something to ground myself to in a world that felt so out of control. "Adventure. Excitement. A Jedi craves not these things."

It was at the age of eleven that my life as I’d known it completely fell apart. My young (60 years old) maternal grandfather died January 30 1982: twelve days later, my maternal great grandmother would die as well. That left my mother without her father and her grandmother, lost days apart, and my own grandmother without her husband and mother.

The adults in my life simply came unglued.

My mother suffered a breakdown from which she has never recovered. In many ways, we lost her then, too.

I remember making phone calls to friends of family to tell them of the deaths; something no eleven year old should have to do. I was the one who accompanied my grandmother, whom I was extremely close to, to the bank to go through the safe deposit box. And when she sat in the car shaking and saying she couldn’t do it, I held her hands and said, “We’ll do it together.” And we did. We did everything together.

That year my parents sold our house and we moved into my great grandparent’s old farmhouse where Grandma lived; if you’ve ever seen The Money Pit, you would understand what the first three years of living in that house was like. 

Everything had to be gutted and redone. I found myself chasing off a grabby workman with a wrench in my hand once; I slept in the middle of the house on a pull out couch with no space, no quiet, no privacy at all for more than a year.

Once the renovations were done (all seven bathrooms and five kitchens included) I finally had a space of my own again, and I spent as much time locked away in it as I could. Reading Star Wars fan club magazines (called Bantha Tracks back in those days) and dreaming of life in a galaxy far, far away.

I even wrote Mark Hamill a letter the year I was 12, talking about the deaths in the family and how Return of the Jedi had helped me through it all. I received an autographed photo in return. It meant the world to a child struggling to live with an adult support system that had completely crumbled from the foundation up.

But my sorrow over losing Carrie Fisher is about so much more than my childhood. It is much more, in fact, about my adulthood.

All my life I have been mentally ill, but I was diagnosed late, (my parents didn’t believe in going to therapy or psychiatrists) in my early twenties, as having Major Depression, OCD, and anxiety. Unfortunately this was largely the wrong diagnosis and would lead me to years of being given the wrong treatment, and not enough treatment at all.

Fast forward to 2011, when at age 40 I came completely unhinged in a story best told another day (or in another lifetime, I haven’t decided yet) and finally ended up diagnosed with Bipolar 1, OCD and PTSD.

I remember one of my first thoughts when they called me Bipolar was thinking, “That’s what Carrie Fisher has.”

I knew that because Fisher had been open about her mental health struggles for so long. She (along with Patty Duke, I realize now) put a recognizable, beloved face to a terrible disease; and I thought, “If Carrie Fisher can find a way to live with this thing, maybe I can too.”

Not that I haven’t had my darker moments. I’ve been there, in the pitch black trying to see my hand in front of my proverbial face. Carrie Fisher found a way to make these darkest moments funny, even if sometimes painfully so because of her brutal honesty. I am still fighting to take back my sense of humor from the disease that erased it from my soul one day, one mood swing, one med change at a time.

But I’m not giving up on the idea that I can find a way to turn tragedy into comedy, even if dark comedy, in the times ahead. I’m tired of crying over Bipolar. I know there will be days when that is unavoidable because we, with this disorder, feel so deeply sometimes you can’t escape the tears.

But there are other times when laughter could provide a healing of sorts that I am so longing for, and so I’ve decided that 2017 is going to be the year I try to wrestle my sense of humor back out of the cold, bony little fingers of Bipolar.

There are so many stories I could tell about what I’ve been through with mental illness, I don’t even know where to begin. So I’m going to take it one day at a time, one post at a time when I have something worthwhile to say; not that this blog will become all Bipolar stuff: I am hoping to still talk about writing and life in general. But when something is such a huge part of your life, as Bipolar is in mine, it is difficult not to talk about it frequently.

And I WILL speak about it now even more, because we’ve lost our champion; the one who always spoke up for us. 

In losing Carrie Fisher, the Bipolar community has lost someone precious and sacred to us; someone who tread the path before us and made it safe(r) to talk about these issues. 

But don’t be misled. The stigma, the punishment in the manner of lost jobs, broken relationships, and abandoned friendships are still dangers to anyone who dares divulge that they suffer from this brain disease. And that’s what it is, folks. It’s a brain disease, and those who fight it should be treated with the same dignity, kindness and compassion as folks who are stricken by other brain diseases or illness of any sort. The stigma of mental illness must be fought on every battlefront, and we must pick up the torch and carry it now, because our beloved General has fallen silent.

I’m ready to continue talking about what it’s really like to live with Bipolar, to be honest about the ups and downs and the toll it takes on me and those who love me. 

I’m ready to continue on down the path that Carrie Fisher blazed for us. And I need help along the way. We need not only those who suffer from Bipolar to speak out, but friends, family, and the public in general to get behind the message that Bipolar is not a choice, it’s a disease and those who have it fight it as best they can every single day.

Living with this disease is an act of courage. I don’t say that to sound arrogant; it’s just the truth. Deciding to get up every day and battle on takes more fight than I ever imagined I had in me. It would be so much easier to give up. Or to obliterate what brain cells I have left with booze or whatever to try to slow the speed of a racing mind. But I’m trying to hold on to the brain cells I have left, so I won’t do that either.

Nope, I stick to the prescribed meds, religiously. Even when they change on a dime and leave me feeling like I’ve been smacked around by a large animal. Despite the weight gain, despite the other side effects, the tremors and the exhaustion and all of it. I take my meds because I want to be as 'better' as I can be. And that is a decision I make over and over again starting every morning.

I hope that by carrying on speaking out about Bipolar disorder and stigma that I can somehow, in some tiny way, honor the legacy of a woman who led us forward from the darkest times when Bipolar had to be a secret and showed us the path toward the light.

I will speak out because I can: because I know there are still so many who, for various reasons, must still conceal their battle and fight it alone. I want to add to the chorus of voices speaking out for those who can't.

I don’t know if I will ever be able to really accept that she’s gone. That’s the problem with losing someone who is a hero to you, so much larger than life, they seem like they should be invincible.

But heroes fall, and it’s up to those of us left behind to pick up where they left off.

Will you join the cause, and help us fight stigma against mental illness?

I hope so. Because I believe in my heart that picking up that torch and running with it is just what Carrie Fisher would have hoped—would have known we’d do in her absence. We just can’t let her down.

The Force will be with her, always. May it be with us all.

Thank you for everything, Carrie Fisher. You will always live in my heart.



Monday, December 12, 2016

Closing Out The Year

2016 has been a real b!*&#.

I don’t know of too many people who would disagree with me on that point. I know from my own little corner of the world it was a year of grieving my father (who passed away in late October 2015) and yearning to be able to write.

I spent the year blocked until a med switch happened in November, which I blogged about previously. It felt so good to write something of any length (I ended up with 63k words in the end) and that actually made sense.

Still it wasn’t the kind of story I was really hungry for, and still am; the kind I can get lost completely in the way that I did with Godspeed and Wishing Cross Station. I didn’t write those books, I lived those books—Godspeed for almost two years— and it is so hard to think of them as being a part of my past now.

They do live on, though, as new readers are still discovering my books daily on Wattpad and for that I am truly grateful. I don’t know how I’d have handled the demise of my publisher if I knew that it meant that no one would be able to read my stories ever again (without self-publishing, which I am not healthy enough to undertake.) So for Wattpad, I am truly grateful.
I’m grateful for my support system at home and my doctors; even if I do scare them with my scary tendency toward allergic reactions to almost everything they try to prescribe for me.

I’m grateful for the roof over my head and the food in the fridge. I am grateful that today, at least, I have the medication I need even if access to it may be questionable next year.

I’m grateful that I am finally learning to recognize pretty early when things are going off the rails and that I can email my doctor for instructions about what to do. This happened this past week as I suddenly flipped over into mania and was rearranging all the bookshelves in my apartment and the art on the walls and wanting to set fire to everything I own (wanting to purge possessions can be a warning sign of mania.)

So now I find my mood going downhill again with less of the helpful med in my system after ending up with too much of it in my system; it’s such a frustratingly delicate balance, and I am left with a headache, a darker mood and find myself wanting to cry.

Maybe it’s also the closeness of Christmas and the melancholy that it brings me personally. I don’t know.

But I am grateful for art fairs and the people who make the beautiful things that make them special. Grateful for a new Star Wars movie to look forward to, and looking forward to giving, which is the best part of the holiday season for me.

Empty chairs at the table will weigh heavily on my heart, but I will try my best to smile.

2017 is shaping up to be a very scary year, for many reasons, most of them political. I worry about losing my Medicare. I worry about a lot of things, but in the end the worry won’t change things. I have to take one thing at a time, because otherwise I will just get lost in the avalanche of anxiety and panic.

I’m trying not to think automatically that 2017 is going to mean nothing but hardship… I am trying to build into it things to look ahead to for strength and hope; it’s difficult when you don’t know from one day to the next where your head and heart will be emotionally but that is the nature of the Bipolar beast. The OCD and PTSD only complicate matters, as do my multitude of physical health problems.

Chronic pain is a miserable companion but yet it remains mine, still I try to find something to think hopefully about.

I usually choose a word to be my keyword for the coming year instead of making New Year’s resolutions, and I think that for 2017 my word will be simply that: hope.

Without hope, there really is no point in anything.

It's my sincere wish that you all find plenty to feel hopeful about in this holiday season, and the days beyond it.

Happy Holidays xoxo


P.S. Another thing to be grateful for is in the photo at the top of this blog: the gift from my husband of a beautiful, retro manual typewriter. I’ve been writing poems on it and posting many of them on Twitter in recent weeks, scroll back through my timeline if you want to find some. Here’s todays: 

Typewriter Poem #28:

Wednesday, November 16, 2016

Catching Up: Living Statues, Music, Meds, and More

Hi everyone,

Sorry I've been absent, but for once I can say that I haven't been sleeping my days away due to depression... I was actually doing some things.

Of course I wore myself out the first week of NaNoWriMo and have been in rest and recovery mode ever since (to prevent me from going into mania.) The undeniable difference that the aforementioned green pills make was obvious as my word count started from zero on day one and rocketed upward.

My totals on my story about street performers who work as living statues went as follows... (if you don't care you can scroll down for other news.)

Day 1: 12,362 words
Day 2: 13,088 words 
Day 3: 7876  words
Day 4: 17,042 words (new personal best, and took me over 50k)
Day 5: 10,152 (total, 60,520, novel technically finished:  typed THE END)
Day 6: 1690 words (filling in here and there)
Day 10: 930 words, (filling in a hole in a scene)

Grand total for this NaNoWriMo novel, called Still As Stone: 63,140 words.

So I hit my goal of finishing the book within the first week (the rest was just tinkering) hitting 50K on day 4. I was driven, I was living the story in my head, it was heaven after being blocked for so long. Heaven.

This is a 'trunk novel' (meaning I don't mean to make it public, it's just for me) but writing it was worth every single moment. I loved the characters, I love the story, I felt like me again for the first time in so long.

Then, I got out my paint brushes and I painted my book's female lead character, Rosalie, who performs under the name The Wallflower. Here she is, as a living statue:

I actually painted something I don't completely hate: another sign the green pills were working.

My husband bought me a very thoughtful gift that week, something I've wanted a long time; a pink typewriter.

It's not vintage but it has a retro design and it's so pretty. I've designated it as my poetry typewriter because, being its manual, it's difficult for me to use with my weak left hand (I can't make the " mark to save my life.)

I've started writing a poem a day on it, and posting them on Twitter under "Typewriter Poems". There have been eight so far and people seem to like them. I'd like to keep it up even if I can't post them to Twitter every day, and I am thinking maybe I'll post them to Wattpad under my experimental collection of bits and pieces called Wishful.

So, I used up my supply of green pills in two weeks right on schedule, and as soon as I went back to the generic blue pills, I felt my mood and energy dropping. I was exhausted again; even after a normal night's sleep. Couldn't think to write much... it was all going back to the way it was before.

Then the miracle happened.

My husband did some research and found out that you COULD request what is called a formulary exception from the insurance company; meaning you could request they cover the green pills even though they don't usually because the blue pills failed to work in their place.

When I asked about this before, I was flat out lied to, and told it was not an option for this med. That was wrong.

So my wonderful doctor spent half an hour filling out paperwork on Monday and filing it online and by that evening, I had confirmation from the insurer: they would cover the brand name med.

Thing is it's really expensive, but my husband insisted that we had to fill it. I think he was more relieved than I was when the approval came through, and I guess that makes sense since he has to live with me every day and it is so much easier when I am up, awake, out of bed, and reading, writing, or painting if my body feels up to it instead of a depressed, totally non-functional mess.

(Speaking of my body cooperating, I locked up my arm, neck and hand after that 17k word day... but we won't talk about that... ouch. Not to mention what it did to my eyes...)

So I now have a two month supply of the brand name med, and then in January we have to go through the whole process of asking for an exception again, because I will be with a new prescription plan. I am cautiously hopeful... I have to be. We have tons of documentation on how I've failed on three different generics for this med and how it is the only one that really helps that my body can tolerate (in combination with the rest of my 'cocktail') and hopefully my doctor can work her magic again and get them to approve the exception. If not... well I don't want to think about 'if not'.

I don't want to talk about the election, but I will just say this, I am on FB hiatus right now and am not sure when I will be back. I miss friends there, but things just got too ugly to watch for awhile there and I don't know if they've calmed yet to the point I dare wade back into those waters. So look for me on Twitter if you were looking for me on FB, at least for the time being.

In music news, my husband also did another truly thoughtful thing for me; he knew I was dying for the new Tom Chaplin solo album (lead singer of Keane) but it wasn't going to be available here until January and I so desperately wanted to write to it for NaNo, so he ordered a copy from the UK and it arrived the first day of NaNo.

The album, called The Wave, is immersive and thought-provoking and heart-string pulling and I love it. Thank goodness for Amazon UK and thoughtful husbands; I know it helped me shape and finish my NaNo novel. So the album, I highly recommend it.

I have also been listening often to Michael Buble's new cover of The Beach Boys' "God Only Knows" which is just lovely. It worked its way into my story too. If you haven't heard it, I recommend a listen.

I read a couple of books over the weekend: catching up on Jennifer Gracen's The Harrisons series. If you like sweet romances steamy enough to fog up your glasses, I recommend these books. The first one is called More Than You Know, the second is Someone Like You, and the third (and my favorite) is Tis The Season. The fourth book is due out in late 2017, and I look forward to it.

So what's next for me?

This morning, after taking green pill number 1 after a few days of blue pills, after about two hours, I had a character name and face pop into my head. I grabbed a pen and notebook and wrote down, "Who is Rory?" Slowly I started filling in a sketchy bio.

I'm not sure who Rory is or what his story is yet, but he's in my head now, I know he's going to have to get written out of it somehow. I am wary of starting another project during NaNo (guarding against flipping into mania...) but my mind is so curious about him. I may end up writing some, we'll see how I'm feeling, one day at a time.

To close: My heart goes out to everyone who is feeling lost right now. As a disabled person, I am afraid, too, believe me. All I am going to add is that I am an ally; a safe person for LGBTQ+, POC, people of different faiths... all those who are afraid right now. My heart goes out to all of you, and I hope that things won't go as dark as they can possibly get. We have to look out for each other, as best we can.