I've been in and out of one doctor's office and medical facility after another in the past two weeks. Injected, scanned, lit up like a Christmas tree...up to and including an ER trip turned overnight stay at the hospital over the weekend that accomplished frustratingly little in the end.
My blood count keeps dropping. They know why. Yet they just keep sending me on from doctor to doctor.
I wish they would just fix it. My primary care doc wanted to put me in another hospital and was talking transfusion- I am battling it out at home, doing what I can and trying to figure out my next move. I really, really wish dealing with the medical system wasn't so much like Chess. Because I totally suck at Chess.
In short: I am one whipped puppy right now.
But to tide you over until my next post- a little something I just finished.
It started as one line that came to me earlier tonight, watching the leaves fall to the ground beneath the weight of a truly bone-chilling rain.
Hope you like it, and hope you've all had a good week, whatever you've been up to, and an even better weekend.
I'm off in a minute headed to the doctor's office at the U for some test results today (think good thoughts, please...) but before I go, there's something time-sensitive I need to post.
I know all I've been posting about lately is my new reality- the diagnosis of bipolar disorder and all that. I promise I am going to get back go posting the usual sort of general nonsense that I post (anything and everything) very soon- after this in fact- I hope to post about everything but the bipolar for awhile because a) it must be boring you to tears and b) I'm sick of talking about it myself. And I hate when I bore me.
But before I do that- please, I'm asking, take a moment to read this.
Madeline's son, Paul, a gifted musician among the many other things he was, suffered from bipolar disorder and tragically, after years of suffering, took his own life.
Madeline has taken the strength that she found somehow through this unimaginable loss and turned it into a passion for helping others get through facing the situation- and though I have not read her book yet (it's something I have to prepare for- I know for me it may have 'triggers' but it's something I dearly want to do) I have read her poetry and blog and through the emails we've exchanged I can tell you she's one amazing lady.
I was so moved by the image she created (and will apparently be wearing at the walk/run) in tribute to Paul that I asked her if I could post it here along with this info- she said yes, so here it is.
I wish I'd had a chance to meet him.
Thank you for listening.
Hope you can all find something today to find comfort, joy, and peace in, in between the chaos we call life. I know I'm going to try to.
...or as individual drawings, if you prefer, instead of in 'poster' form.
I hate the term 'mental illness'.
It somehow seems to imply that it's less real than any other biochemically caused illness or syndrome.
I never faced such stigma after I had a stroke.
Stroke is classified as a brain disorder right along with bipolar disorder. And Parkinson's, and Autism and...I could go on. The list is very long.
There's even a ribbon, I've heard.
It's silver, which is nice because I love silver. Who knows, maybe someday I'll get one, or display the image here since I apparently deal with several of the disorders that qualify as brain disorders.
But I'm not quite there yet. I'm not so much a 'ribbon' sort of chick as I am an artist, so here you go. My feelings are all right there expressed in my art instead of in a symbol chosen by others no matter how lovely that symbol is.
If you like the above art and/or would like to help erase the stigma by posting it (either the poster or an individual drawing version) on your blog or sharing it on social media sites, that's fine by me, just please, list it as my work.
Ordinarily I wouldn't care, but I'm pretty damned proud of this one.
I am not a stereotype.
I am not a caricature. (if I hear someone say "bi-winning" and laugh about it one more time...)
I am a writer.
I am an artist.
I am a musician.
I deal with a variety of syndromes and physical challenges, every day.
Bipolar disorder is only one of them.
It's mightiest and greatest danger to me, perhaps.
Ye Be Warned: This is a long post. I promise they'll be shorter after this- but this, and the last few, I've just kind of had to write as they had to be written- they're something I need to 'get through' and I hope you'll bear with me.
--
My mother still tells a story about when I was two years old and riding in a cart in the grocery store, swinging my feet and happily singing softly to myself. For once in her life she just let me be as I was- and let me amuse myself with the song.
Me, three months before my third birthday
An elderly woman walking past heard what I was singing and stopped, backed her cart up, and looked at my mother sideways. "Is she singing what I think she's singing?"
"Yes," my mother answered. "She has a thing for Fred and Ginger."
I was singing "Let's Call the Whole Thing Off." Not exactly your usual standard in a two year old's repertoire. Thanks, George and Ira!
No matter what has happened in my life, music has always been my constant- my safe place when there was no other. I don't just hear music, I see it in colors, I feel it as a physical sensation. I dissect the tracks of each song in my mind, isolating each instrument, each harmony and therefore never hear the same song the same way twice.
I can't read sheet music- teaching me has been tried many times, but I can hear a song and often sit down and fake it pretty well. This was discovered when I was three, and I'd hear my sisters practicing for their piano lessons and then sit down and play what they'd just played the moment they left the piano. Then I'd get up, pick up my baby doll and go give her a bottle.
I don't love music- I live music.
So, it was when I lost music entirely for the first time in my life a few months back that everyone who really knows me best knew something was terribly wrong.
'Writer's block'? She's been there many times, they said.
Lack of desire or inability to create visual art? Just a phase, it'll pass.
February without music?
Undeniable proof something had gone very, very wrong.
The two people on this planet who know me better than anyone else concurred: they had never seen me this way before, and it was something beyond my ability to control.
They'd seen the depression, always. But the mania had always hidden, lurking in my 'work' as an artist- in writing, in music. I turned it inward- and created at an incredible rate. But then the stress of the rest of my life got to be too much after the past few years of events, and my brain seized. A car revving while stuck in park with the pedal to the floor- smoking, melting, and ready to burst into flame.
When the mania flipped and took all those things I love most away, including my most precious joy of all- music- it could not be ignored, not even by me.
Yeah, I'd tried to ignore the shaking that never left me, for weeks. I was used to going without sleep. In truth I don't think I've ever slept through a single night in my life or gotten 'normal' amounts of sleep before the past two weeks. It's an utterly new experience.
Is this how people deal with life? They sleep soundly, then they can face another day?
Boy howdy, what a concept.
Anyway, for awhile even before I went away on my trip in July, I found music too emotionally difficult to handle. I had intended to listen all the way to my destination- more than 20 hours on planes during the 27 hour total journey in which I lost an entire day crossing the dateline- but found I couldn't stand to listen to a single song.
By the time I got back from Australia (yes, I said Australia- and I was sadly only there about four days and never actually saw the place. Initially I had intended to stay three months but I got really (physically) sick within hours of arrival and never left the apartment where I was staying. That's only one piece of a very complicated puzzle. This is not an easy story to tell, and it will take time.)
It got so bad that I couldn't even hear part of a song in the grocery store without bursting into tears (sorry, random people at Kroger- I couldn't help it and it really had nothing to do with the soap aisle- I love the soap aisle.)
I distinctly remember that happening- I'd only been back a few days and had to get something important at the store. Bluer Than Blue by Michael Johnson was playing- a song I remember really well from my early childhood because my mother and sisters loved the LP it was on- and I just lost it. Beautiful song and sad to be sure, but my reaction was way over the top, even for me.
No more music for me- that's what I declared at the airport upon my return to the States.
No more music.
No more art.
No more writing.
I wanted to be normal, damn it, and if giving up those things could do it then, small price to pay. I didn't want to be an artist of any kind anymore if this was the cost.
Unfortunately, I didn't realize at the time that the art is not the problem, it is my salvation. It is a safe harbor from the storm happening in my brain all the time. Without it, I will surely run aground or worse, I'll quietly slip beneath the surface and drown.
This is a storm that we know now that I've battled since childhood- and always been misdiagnosed because I did not understand the severity of the mania. I didn't realize myself that the thing has a name, this 'way' that I've just always been.
That, and you know, I really resent not having the 'euphoria' that everyone talks about with this thing. Totally. False. Advertising. (in my case. Your mileage may vary- and I have to wonder if other temperaments are more prone to euphoric mania than INFJ are...)
For me, the 'mania' means panic attacks that never stop, inability to stop thinking to sleep, can't eat, can't hold still, needing to run though there's nowhere in the world left to go after you've gone all the way to Australia and back in five days time.
It's all fear, and pain, and wanting it all to just stop and be quiet so desperately you don't know what to do. That is how it feels for me.
Not "I'm king of the world." Not delusions of grandeur.
It just hurts, so much. All of it.
Still I wasn't ready to accept the truth.
Then there was a chain of events that led up to my walking into that emergency department and telling them I needed to talk to someone. I'd tried a few weeks before, but my primary care doctor said it would take (and I verified) six weeks to get an appointment with a 'good psych doctor'.
I feel like that's kind of ridiculous that a person in crisis is told to try to 'hang on' that long. To me that's like a person who has been shot in the chest walking into the ER and being told "Hold on, here's a band-aid, we'll be with you when we can. Try not to bleed on the floor."
I sure as hell was in crisis, and I was lucky this time to have some very nice people on duty that night- who talked to me, made sure I'd be safe if I went back home, and set me up with a plan to get through the weekend until I could start the day-program on Monday.
That ER visit led to them telling me what in my heart I already knew. What I am about to tell you now.
My friends, I apologize for not individually emailing you to tell you all this- but it's something I just can't write again and again. It's something so intensely personal that I had considered telling no one, but something so misunderstood, so stigmatized and yet so key to who I am, that I have to just put it out there in order to accept myself for the first time in my life.
I know some people feel it impersonal to be told such a major thing on a blog and I apologize if any of you do. Unfortunately this is the only way I can handle it right now as I struggle still to accept the label they've so appropriately affixed to me. So I hope you can forgive me and know that it doesn't mean I didn't think enough of you to write you individually.
It just means I'm dog paddling as fast as I can right now, and this is the only way I can do this. I've thought long and hard about saying it- but it's the truth- and I don't want to hide anymore.
Some of you I know will not be shocked by this. But to those who are, just remember I've 'been this way' all my life. All the time you've known me, seen the rushes and crashes here on this very blog (and that's part of the reason I am leaving them all up as is. Because maybe seeing it later might help somebody, even one person, and if it does it's worth it) this is who I've been and who I am.
I am not just suffering from depression.
I have bipolar disorder.
This new diagnosis replaces the MDD one to stand alongside the existing OCD and anxiety disorders (more than one).
I am waiting for them to write down on paper whether or not it's 'Mixed bipolar' or 'bipolar one' with my last/current situation classified a 'mixed state'. I've been in this so-called mixed state most of my life- hell, I thought everyone felt this way.
Much like I didn't realize that not everyone saw halos around light bulbs all their lives like I did until my eye surgeries, I didn't realize until just recently how differently my brain makes me view the world.
So.
I was talking about music at the outset, and that's where I'll leave this, too.
After months of not being able to even listen to music- and only having sung once (I sang along with the congregation to Amazing Grace at my friend's funeral- not to do so would have felt too disrespectful)recently I wrestled music back from the clutches of the Darkness, thanks to a particular song.
You know I have a 'thing' about Ireland due to my favorite character I've ever created/written for. So how fitting that this song, Isle of Innisfree, opened up the floodgates for me and music is returning, slowly to my life.
Singing A Capella is kind of like leaving the house without make-up.
Okay, so it feels more like leaving the house without clothing.
But it's honest, all embellishment stripped away. It's pure, and it's the very essence of singing- one voice, reaching out, to try to connect souls with the people who hear. So that's why I chose to do it here.
I hope you'll feel something when you hear this and even if it's not to your liking, that you'll celebrate with me this not so small victory that I can sing again, even if only sometimes.
There is a huge stigma that goes with this diagnosis.
I'm determined to fight it, because it's just a label for the way I have always already been. Still, accepting that label is going to take time.
Truthfully I'd still give it all up- music, art, writing, all of it, in a heartbeat if I could just be granted lasting internal peace.
But since I can't, I am grateful for them, because I have seen people with BPD spectrum disorders who don't have a creative outlet and I feel for them. They have such a difficult time finding anything to distract themselves, to put themselves and their souls into. So I am very grateful, now more than ever, for those arts.
And as I said the other day, at least now we know where to direct the blows at the beast. And music is still one of the best weapons in my arsenal to battle it.
With my shield, or on it. . .
love to all
bru
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*Photo attribution in 'video': Pasture Near Ballyieragh, by Pam Brophy
I had no idea that therapists were so fond of decks of cards.
And board games. And board games with decks of cards in them.
Questions, questions, and more questions; time and again spread out over hours and hours of every day during those two weeks (though I got nights and weekends off, I did always have homework and that invariably included more questions).
One of my 'homework' assignments that was most difficult emotionally was to create a 'vision' board of things are meaningful to me or that would make me happy. I'm still exhausted from doing it.
Eerily enough, no matter how each different therapist divided the varied decks of cards, the questions each person got seemed always more appropriate than it could possibly seem random.
I wonder if they ever (or routinely) stack the deck?
Even if it's not a common practice, I guess it could be that’s what happened this time. It’s not like I would have noticed.
The 'group' had suddenly dwindled to less than a handful. Several people ‘graduated’ the day before, as some preferred to put it (sounds so much more accomplished than 'discharged' doesn't it?) from the intensive day program I found myself participating in.
We sat there in that room, day in and out, like mismatched socks in a drawer within a world that prefers only perfectly coordinated accessories.
Apart from the everyday, and wondering if there really is some big Cosmic Dryer out there that magically (or in the case of the paranoids, maniacally) tumbles whatever it is that is meant to be our ‘mate’ away from us and leaves us so incomplete. The thing meant to be the other half of our own brain: a person, a calling, whatever, that the evil thing sucks up some big freaking vent tube and shoots out into oblivion, never to be found by us again.
Maybe that would explain why so many of us are unraveled, solitary little socks in the great Hosiery Department that is the universe.
Threadbare, and trying to mend our seams with fairy floss and good thoughts because we can't find a needle and thread.
Of course, some in the group try to mend those holes with drugs and booze, but that has never been my style. My own brain is much too much of an out of control amusement park all on its own.
So the therapist du jour (and there were many- at least two to three different ones per day, in addition to the doctor, and for some of the others, the social workers and parole officers (again, not my gig) held the deck in her hands and went around the room asking people these questions printed on dog-eared little pieces of cardboard the size of your standard business card.
I was listening to the answers of the others so intently-- or okay, maybe it was the new medication too-- but either way, I know that she had to say my name more than once before I finally looked up from the little chair in the corner that I claimed on my first day there and sat in every day for the duration- straight back, not padded, wooden arms—and positioned squarely so no one could possibly sit behind me.
I have a thing about that. I have, as it turns out, a lot of ‘things’.
“February,” she repeated, and finally I looked up. “It’s your turn. Are you ready for your question?”
I believe my response was a semi-half-nod.
I was ready to be asked a question all right, but most of them had been pretty generic. For me, this one was anything but.
“What would you want your last words to be?”
My reaction was purely visceral. I spoke without thinking. Without hesitation. Without question.
“'I love you'.” I replied.
The handful of others in the room kind of collectively drew in a breath and held it. I don’t know why. I have to wonder if maybe they’ve not heard anyone say the words to them or even around them, aloud just like that, just so plainly in their lives and so hearing them was a shock to the system.
“…alternately,” I added suddenly, thinking more deeply about the question and all its implications, “’thank you’. Better still, all of those together. First I love you, and then thank you.”
Internally I was already having another completely visceral reaction- and tears filled my eyes.
In my mind, I was already picturing exactly who I imagined I'd be saying those last words to, and I could so clearly see that face... "Yeah," I whispered, wiping at my wet cheek with the back of my hand. "They'd be "I love you."
She nodded to me, contemplating my answer. Given that others present may have answered something like ‘You’ll be sorry,’ or worse, I guess maybe they seemed safe, or maybe just appropriate. She moved on, but it took me a long time to stop thinking about the question, and the answer. Maybe I haven't stopped, not really.
Those words, "I love you, and "Thank you." are very nearly always appropriate (unless spoken sarcastically but that's an entirely different thing than I'm talking about here.)
Today is a day when everyone is thinking a lot about the frailty of life.
About how quickly people can just vanish and be gone forever. I think about that a lot, not just on a day that so many people I am sure are writing about in more moving ways than I ever could that I won’t get into it at all, I’ll let those who are better writers and poets than I will ever be say it all instead.
Instead, I’ll tell you that a month ago (almost to the day) we lost a dear friend very suddenly.
Someone who is ‘family’ in that way only the dearest people can be. Someone so together- someone who so totally had it all at the age of thirty-two that she astounded all who knew her. The career, the marriage, family, house, happiness, she had it all. And now she's just gone.
We lost her in an accident, on a weekday afternoon when she did something she often did- something simple people the world over do every day.
She went out for a bicycle ride.
She never came home.
She never will.
No, she didn’t cause the accident. Yes, she was wearing a helmet. It’s just that helmets really can’t help you when you get hit by a truck.
They say it wasn’t anyone’s ‘fault’. It was a tragic accident.
I only hope she never knew what hit her.
Her three year old still asks when she’s coming home. I don’t know what that baby's father tells her, but knowing him I’m sure it’s something amazing, and meaningful, and loving, because that’s the kind of man that he is.
I also know it because the words he spoke at the service for his publicly proclaimed (and readily recognized by all who knew them) “soulmate” were all those things and more.
In the end, he challenged us with words I won’t forget, words that motivated my actions after we got back from that long drive out East even as my mind spun further out of control, words that continue to do so now.
No regrets.
Don’t live in fear.
Be the best you that you can be. Live your life; make her proud.
I’m trying, I swear.
So let me just say one more thing.
Don’t ever be afraid to say those words: “I love you,” or “thank you.”
Because this is world in which not only do misguided people fly airplanes into buildings but where accidents happen and wonderful women who are young wives and mothers can just go out the door intending to be gone a little while and never come home again.
Say them when you feel them, because each chance could be your last chance to say them, or to have them said to you.
Not a morbid thought.
A hopeful one.
Hopeful, because if I’m writing it and you're reading it, then it means that we’re both here to still have the chance to say those words, and so many more that can heal, and help, and comfort.
Hopeful, because if I know anything for an absolute certainty, it’s that in this world or any other that could be beyond it if you believe in such things- love and gratitude are what should always matter most.
Love reigns.
And even in this crude existence that we’re stuck in now- whether or not we ever openly admit it, at the beginning of our lives, every day in the middle and at the very end it’s love- the desire to love and know we are loved- that rules us all.
If it truly was possible to fall off the face of the earth, I would have found a way to do it in the past few months.
In July, I spent a great deal of time hovering above it.
The death of my new life came disguised as dawn: a deceptively beautiful sky
Up so high, out so far over the ocean and yet, never quite able to finally touch the stars.
You won't believe where I've been.
You won't believe where I am.
You won't believe what it's all come to.
Long story short: too many miles traveled but still such a long way to go.
I haven't been able to write.
Or paint.
Or do anything creative at all.
For months.
Until the past two weeks, and it's only tiny steps I'm managing now.
That's why my posts here will be short and my goal is to write something every day, even if only one line on Twitter which, you know I had not enjoyed before but right now, even 140 characters is daunting and they tell me I have to begin somewhere.
So, I begin there. Then hopefully I can begin to explain it all here, in time.
I've missed you. All of you. Thought about you more than you know.
Special thanks to the handful who missed me too (you know who you are- thank you for the emails, I only recently saw them and I promise to send notes back even if I can only manage a line or two.)
I won't forget who remembered.
I won't forget who would have taken note if I had just dissolved away entirely.
I very nearly did, and now I finally know why. It's a lot to take in, and I am still learning how to do that.
Yet, I'm still alive. That, my friends, is both the victory and the daily battle.
Mentally, this is where I've been for a very long time:
It's the first thing I'd put any soul into drawing in a very long time.
It gave a lot of people a lot of insight, including myself, into what I'm really up against. The right people; people who have, and who will, help me find a way to resurrect the dream of that new life. Everything will change- everything must change- in most ways, everything already has.
It's harder to fight an enemy you can't see.
At least now I know where to aim the blows of my sword.
I find myself thinking of that ancient saying I've always loved: "Either with your shield, or on it."
