Daily Archives: May 21, 2016

What If I Don’t Blog About Bipolar?


Recently I’ve been blogging about caregiving and about exhaustion more than about living with bipolar disorder. That said, obviously coping with major life events, such as taking on the role of caregiver of two parents struggling with dementia, is a HUGE stressor and potential trigger for mood cycling.

Cocooning in bed right now. Treated myself to two luxurious nights on two separate weekends as payment for all the work I’ve done. I coordinate my parents’ care, pay their bills, cleared out their house of their personal belongings with the help of an estate sales company, took multiple construction bids while we considered remodeling and leasing it, and now I’m our sales agent’s main contact. Luckily my parents made an excellent decision when they bought their beach house in the 70’s. The proceeds from its sale will enable my sister and I to take care of our parents.


Filed under: Bipolar Disorder, Dementia, Family, Mental Health, Triggers to Mood Cycling Tagged: caregiving, caretaking, exhaustion, Grief, overwhelmed, self care

I Love My Fur-Kids!

Last night I was up about every two hours, which isn’t unusual, except that this was from coughing more than pain. I would get up and either pour myself a cup of peppermint tea or a shot of my cold … Continue reading

Writing with intent

I’ve probably blogged a few hundred posts in my mind over the last few months. I just haven’t had the time or been struck with enough gusto to sit down and get myself to write (or write and then post).  Why? Why? Why? Even this post is taking forever to write.  Maybe I’m afraid?  It’s […]

Mother’s Day: A Bipolar Love Letter to My Children

2016-05-03-1462288508-9739424-mothersday2.jpg
When I was pregnant with my first child, Sophia, I felt invincible, like an all-powerful fertility goddess full of unfettered anticipation. I’m bipolar, so maybe I was a little manic, but it felt soooo good. Pregnant on the first try, breathing smoothly and holding steady in warrior pose in anticipation of labor. I even led a month-long student trip to Greece eight and a half months into the pregnancy, convincing my midwife I would be careful, would take it easy, and would rest at night. Instead, I trekked up mountains and across dusty goat paths, brushing my hands through wild oregano; on the beach, after snorkeling, I massaged olive oil into my stretch marks, and into the wee hours of the night, danced the kalamatiano. In one photograph, I float on my back in the blue, buoyant Aegean, my round belly rising from the water like the moon.
Sophia was a dream. Can I say that labor was easy, that she slid from me as if down a water slide, and immediately nursed in soporific contentment? She slept for long, quiet stretches, which meant I did, too, and giggled, first, at the dog’s long, swinging tongue brushing her cheek. She traveled in front carriers and strollers across Greece, Italy, and Mexico. If there were tantrums, I don’t remember any. We called her our “trick baby”: her easiness convinced us to have a second.
My pregnancy with Alexander was difficult. I was tired, full of self-loathing about my failing ambitions, and often dragged down into the mire of depression since I stopped my meds. No fallout the first time, but this time? I was convinced my depression would damage my growing son who was so intimately linked to my chemistry. Irrational, like a belief in medieval humors and black bile running through the umbilical cord into him. But not so irrational. Wasn’t he suspended in a body flooded with cortisol and deficient in serotonin and dopamine? Wasn’t this amniotic bath contaminating him?
In a first photo: I sit in the hospital bed holding my newborn son, swaddled tight, against my chest with one arm, the other arm bare, visible. The scars that run up and down my arm are visible, evidence of what I believed deep down was my maternal unfitness. It should have been a beautiful photograph, but I couldn’t look at it. Shame and despair beside beauty and hope. I had my husband delete it.
I fell deeply in love with my son, Alexander. His enormous brown eyes gazed up at me in unblinking forgiveness: love, love, love you. He nursed for hours at a stretch, as if reluctant to give me up, as if expecting already I might leave him. He was not an easy baby — rarely sleeping that first year for more than two hours; I staggered to his room and rocked him and nursed him and sang every lullaby I knew — My Bonnie lies over the ocean, my Bonnie lies over the sea.... In those dark, sleepless hours, when I felt like a failed mother, when my bipolar disorder was wildly uncontrolled, I thought: Surely my family would be better off without me. Then I would look down at my son, who was looking up at me, and I thought: Just hold on a little longer, let him need you a little less.
From my journal, four months after my son’s birth: I am running, looking at the world flying past me, unable to see it, to feel how beautiful it is, and it is beautiful, it is April, austere tulips and dopey daffodils and crab apples blooming and I see them and I see through them, and all I do is occupy empty space. I am via negativa.
When he was nine months, I was admitted to the psych ward for the first time. My husband had to hold me down in bed because I threatened to run outside in front of any oncoming car. Depleted. Sleepless. Not eating. Manic. Depressed. What is called a Mixed State. I stopped nursing cold turkey. The hospital didn’t get me a breast pump for two days, so milk spilled down my stomach, soaking my pajamas and the sheets. How could my son ever understand my sudden and utter absence? How would I ever make it up to him? How would he ever trust me again?
For several years, that was the pattern: I was in and out of the hospital, trying to find stability, trying to find the right cocktail of medications that would allow me to slow down, trying to teach my classes, trying to make chocolate cake, trying to keep up with baths and lunches and field trips, trying to breathe and to breathe in my children. When I would come home from the hospital, Sophia and Alexander would insist on sleeping in my bed, each on one side of me, holding my hand or touching my leg for assurance that I was still there and not going anywhere, not leaving again, not trying to leave for good. They held me in place with their tiny, warm bodies with their insistent and unrelenting love: You are ours, they seemed to say, not yours, not anymore.
Their relentless love is why I am still here. They needed me in their world, so I returned to stability, self-compassion, and most days, even self-love. My children and I talk about the scars on my arms, and those years of my itinerant, unstable motherhood, and their fears for me — that the bipolar dragon might return and carry me back to its cave.
But it’s been years now, and I feel sound and steadfast, and truly, they don’t worry that I’ll be gone in the morning. Sophia is independent and bold, born of intrepid travel and buoyancy. She tells me her own fears, about boys and puberty, and about her dream to move to California and be an animator. Though he’s now ten, Alexander still crawls into bed with me. A sweet intimacy which I know is likely to disappear when he hits adolescence. But for now, I swoon over his long, skinny legs that bump against mine, and his head which sometimes settles close to mine on the pillow, and his deep, untroubled breath as he slips into sleep. And I understand that my children will never need me any less, and I will always secretly need them more.

A Love Letter to My Future Lover


Dear T. (Spaceholder):
Most of what I used to write was fiction. Inventing, stealing, and playing pretend. I read three novels a week, sinking into other worlds, other possible lives not my own. It was a way to escape myself, my life, all that I had failed to do. I could be anyone in my stories, anyone but me: a Ukrainian prostitute, a Polish home health aide, a sideshow freak. Those lives could be written as more meaningful than mine. I was sick—bipolar and aonorexia taking me down—and trying to die for so many years, that I had no hope for my story. Words brought clarity, meaning, and shape to my disintegration.
But then I began to get well, to surface from the black swamp of despair, and to imagine my own possibilities again and make meaning out of my life. It didn’t have to be about ending, but about redemption. And writing fiction no longer seemed as important as writing my truth, writing about vulnerability and pain, about rising up from the ash heap of the self and gaining altitude again with wings that were in tatters but still beating, still lifting me into the trade winds.
So I write what I feel and know about my experience in the world. This is me. I offer myself to you, Dear World. Be gentle or fierce, it’s worth the risk because the days have sharp edges now, and the hair on my arms stands on end, and my vision is acute, and I can hear my heart beating in my ears. I am permeable and the world rushes through me.
I used to ride horses at a stable that rescued abused horses. One afternoon, a new horse was alone in the paddock, galloping across the field and skidding to a stop at the fence line. Over and over. I thought it was playing. What’s the word? Frolicking. My instructor, Lee, corrected me.
“He’s wicky wacky,” she said. “After all the abuse, he’s terrified of being out there alone. He’s going to hurt himself rushing the fences like that. Watch this.”
She disappeared into the barn and returned with Chandi, a horse who had arrived skittish, but after long hard work, was now calm and reliable. She released Chandi into the paddock. The new, wild horse trotted over and immediately settled, nickering softly to Chandi as if in gratitude. No more wicky wackies.
Do you know that if you take one single heart cell, a myocyte, and place it in a petri dish by itself, it will go into arrhythmia, lose its steady rhythm and beat wildly? Wicky wacky. But if you take another heart cell from any other person’s heart in the world, and put it into the petri dish, the cells will immediately start to beat in rhythm together? As long as the beating cells do not touch each other, they beat at separate speeds. But when they touch? The side-by-side cells form interconnected sheets of cells, and beat as one.
That’s what it is like for me. I get wicky wacky when I’m rushing fences alone. It’s why, when I feel an intuitive connection with someone, a shared rhythm, I leap into that relationship. It’s how all my close friendships are: steadying, transparent, defenses lowered. Just seeing and knowing and accepting and hoping for each other. It’s why my marriage was a spectacular failure—we fell apart, cells in separate petri dishes, no interconnection, no shared rhythm.
You said, as if in astonishment, “You don’t wear your heart on your sleeve. Your heart is your sleeve.” A few years ago, though, I was guarded, defended, remote, and inaccessible. My ex-husband once said (granted in the middle of my bipolar collapse), “Your misery exhausts me.” Death seemed better than failure, seemed better than life inside death. But coming through all that? The worst that life could throw at me?
Risk, real daring is not jumping off the bridge but walking across the bridge to the unknown shore on the other side. Allowing myself to be seen—stripping all the way down to truth and longing and fear and tender, terrifying hope. In The English Patient, Michael Ondaatje writes, “The heart is an organ of fire.” And it’s true, isn’t it? The heart is not just there to help oxygenate and circulate the blood, but to quicken a thrilling rhythm, to throb in our ears, to push against our ribcages, burning us from inside with all that we feel and want. It reminds us that we are alive, yet, that we respire and are inspired, circulating ideas and words and sounds throughout our bodies, asking us to take necessary breath, to swallow language and love. And to be a little less alone in the petri dish, and a little more in syncopation, and yes, in love with each other.
Love, with love, in love,
Me

I’m a Blessing Not a Burden: Mental Illness and Hope



I'm alive and that’s a blessing.
In the essay, “My Friend’s Death Was a Blessing,” recently published at an online site and since taken down, the author states that her friend's death is a blessing since she suffered from what, in her limited opinion, was unremitting mental illness. Hence, her dead friend would have been a lifelong burden on her loved ones (among whom I don’t believe the author was counted). The response, the backlash, has been swift and generally supportive of this fact: as someone suffering from a lifelong mental illness, I shouldn’t kill myself in order to alleviate the burden on my family and friends, among whom are my children (whom I do count as loved ones).
I have Bipolar Disorder. I have often been an immense burden on my family and friends in times of deep suffering. Over five years, I was in and out of the psych ward and inpatient eating disorder treatment programs twenty times. Some might say I was locked up longer than I was free. My children sent me crayoned drawings and visited me in barren community rooms where they tried to get me to smile, tickling my side with their tiny fingers or kissing my cheek. I have been on almost every medication—anti-depressants, antipsychotics, atypical antipsychotics—and none of them worked. I went through twenty-five rounds of electroconvulsive treatment (“electric shock”) that failed to diminish my empty, black depression, but did wipe out ten years of memories, some terrible (waking up in the ER, strapped down, after a deliberate overdose) and some cherished (my children singing, drawing, dancing, whispering to me, growing inside all those years). A priest even performed an exorcism in my little locked room. How hopeless can you get to believe in the power of hokey pokey-demon-be-gone-claptrap?
Most days, I knew exactly how much of a burden I was on family and friends. My ex-husband once told me, “Your misery is exhausting.” Even my long-term therapist dropped me due to my suicidal instability. At the very end, my psychiatrist sat me down in a small, narrow office. Between us on the desk was my file, thick with charts and admissions and diagnoses and medication lists and my failures. “You are too extreme a case,” he said. “You are a hopeless case.”
He didn’t have to tell me this because I already believed in my hopelessness. My arms were covered in scars from decades of self-injury. I’d been trying to die in one way or another—jumping in a frozen lake, overdosing on alcohol and medications, swimming out to sea in the middle of the night, starving myself to the point of heart problems, having to be locked inside of a car while my ex-husband drove around Manhattan for two hours until I fell asleep because I was determined to jump off a bridge, any bridge, and the only way off the island is over a bridge. And passively: hoping to be slammed by a car, to skid off icy roads into trees, and researching how to poison myself via carbon monoxide and a hose and plastic bags over my head.
How could anyone love me like that?
And yet, my family and friends continued to love me through all of the misery and pain. Not all of them because I was a burden and difficult to love having no love to give back, and that’s okay. We meet each other where we are in this life, with our best capacities for love and forgiveness and acceptance at that moment.


I am a blessing. I have come out on the other side because I learned to hope again, to feel joy, to accept the necessary pain that leads to joy. I don’t have to die to be well. I will never, technically, be well: bipolar disorder is maintained but not cured. And the maintenance? Interrogating despair and knowing when I need to be reminded, over and over, by those who see and know me that it will pass. Falling into bliss and rolling around in its ecstasy but knowing when it might be mania, and stepping back. With the love and support of family and friends and my own kick-ass will to live, I am HERE, ALIVE, still have BIPOLAR DISORDER, but I am THRIVING.
I am a blessing, a benediction of grace and hope and impossible possibility. As are you. 

I’m a Blessing Not a Burden: Mental Illness and Hope



I'm alive and that’s a blessing.
In the essay, “My Friend’s Death Was a Blessing,” recently published at an online site and since taken down, the author states that her friend's death is a blessing since she suffered from what, in her limited opinion, was unremitting mental illness. Hence, her dead friend would have been a lifelong burden on her loved ones (among whom I don’t believe the author was counted). The response, the backlash, has been swift and generally supportive of this fact: as someone suffering from a lifelong mental illness, I shouldn’t kill myself in order to alleviate the burden on my family and friends, among whom are my children (whom I do count as loved ones).
I have Bipolar Disorder. I have often been an immense burden on my family and friends in times of deep suffering. Over five years, I was in and out of the psych ward and inpatient eating disorder treatment programs twenty times. Some might say I was locked up longer than I was free. My children sent me crayoned drawings and visited me in barren community rooms where they tried to get me to smile, tickling my side with their tiny fingers or kissing my cheek. I have been on almost every medication—anti-depressants, antipsychotics, atypical antipsychotics—and none of them worked. I went through twenty-five rounds of electroconvulsive treatment (“electric shock”) that failed to diminish my empty, black depression, but did wipe out ten years of memories, some terrible (waking up in the ER, strapped down, after a deliberate overdose) and some cherished (my children singing, drawing, dancing, whispering to me, growing inside all those years). A priest even performed an exorcism in my little locked room. How hopeless can you get to believe in the power of hokey pokey-demon-be-gone-claptrap?
Most days, I knew exactly how much of a burden I was on family and friends. My ex-husband once told me, “Your misery is exhausting.” Even my long-term therapist dropped me due to my suicidal instability. At the very end, my psychiatrist sat me down in a small, narrow office. Between us on the desk was my file, thick with charts and admissions and diagnoses and medication lists and my failures. “You are too extreme a case,” he said. “You are a hopeless case.”
He didn’t have to tell me this because I already believed in my hopelessness. My arms were covered in scars from decades of self-injury. I’d been trying to die in one way or another—jumping in a frozen lake, overdosing on alcohol and medications, swimming out to sea in the middle of the night, starving myself to the point of heart problems, having to be locked inside of a car while my ex-husband drove around Manhattan for two hours until I fell asleep because I was determined to jump off a bridge, any bridge, and the only way off the island is over a bridge. And passively: hoping to be slammed by a car, to skid off icy roads into trees, and researching how to poison myself via carbon monoxide and a hose and plastic bags over my head.
How could anyone love me like that?
And yet, my family and friends continued to love me through all of the misery and pain. Not all of them because I was a burden and difficult to love having no love to give back, and that’s okay. We meet each other where we are in this life, with our best capacities for love and forgiveness and acceptance at that moment.


I am a blessing. I have come out on the other side because I learned to hope again, to feel joy, to accept the necessary pain that leads to joy. I don’t have to die to be well. I will never, technically, be well: bipolar disorder is maintained but not cured. And the maintenance? Interrogating despair and knowing when I need to be reminded, over and over, by those who see and know me that it will pass. Falling into bliss and rolling around in its ecstasy but knowing when it might be mania, and stepping back. With the love and support of family and friends and my own kick-ass will to live, I am HERE, ALIVE, still have BIPOLAR DISORDER, but I am THRIVING.
I am a blessing, a benediction of grace and hope and impossible possibility. As are you. 

An Anorexic’s Nightmare

I’ve been out of touch.

Quite literally.

My waking hours are wasted spent “running to doctors,” as my grandmother of blessed memory would have put it.

So many doctors, so little time.

And the striking thing, the thing that literally renders me speechless, is that none of them ever touch me.

Not even with gloves on.

They “listen” to my heart and lungs through the three layers of clothes on my torso: camisole, tee, and blouse. 

I’ll let you in on a trade secret: the stethoscope has to go on bare skin.  Otherwise all you hear are three layers of cloth moving against each other: scritch, scritch, scritch.

They don’t look into my eyes, nose, or mouth, although volumes are written there.

Nor do they palpate my abdomen, which, if they did, would give them a surprise, since I have a couple of tender masses in there.  In fact, my erstwhile gastroenterologist, who had it firmly in her mind that I had IBS before she examined me, mashed into my belly like a jackhammer, and while she watched me peel myself off the ceiling, she mumbled, “Hmmmm.”  Yet she did not question her diagnosis.  I fired her.

I got a shock the other day when I requested a copy of my latest MRI from a specialist who had only touched the affected part of my body one single time, out of the several times I’ve seen him.  On that first visit he did pretend to listen to my heart and lungs.  I had a sweater on that day in addition to the above mentioned layers, so his exam was extra special.

When I picked up my MRI report, the receptionist handed me a copy of the clinic notes from my most recent visit.

It said:

“Well developed, well nourished white female in no acute distress. 
Pupils symmetrically reactive.  Cranial nerves grossly intact.  Trachea midline without deviation.  No jugular venous distension.  Heart: S1, S2 normal, no friction rub or gallop.  Lungs clear to auscultation and percussion without wheeze or rales.  Abdomen soft, non-tender, no masses…..”

In short, whether or not you know the jargon, here is an entire “normal physical exam,” none of which was ever done. 

This is the gift of EMR, Electronic Medical Records.  It provides a default “normal” physical exam, altered only if the provider inputs other findings.  One would think that this amounts to falsifying medical records, wouldn’t one?

When I was a medical student, we (or at least I; I can’t speak for the other students) practiced this catechism of normal findings, writing it longhand over and over until I had it memorized in my sleep.  That way we knew what was normal and what was not.

There were two differences, though: in my day we actually wrote things in paper charts.  We had to write really fast, so our notes looked like this:

“WDWNWF in NAD C/O SOB x4H”

Translation:

“Well developed, well nourished white female in no acute distress complains of shortness of breath for the past four hours.”

The other difference is that we actually laid hands on the patient.  We had them undress and put on a gown so we could lay the stethoscope on their chest and close our eyes and listen for those subtleties and nuances of the music the heart makes.  I remember silently cursing chest hair: scritch, scritch, scritch….

And if we didn’t examine something, we wrote: NE (not examined).  But we were not allowed to not examine something, unless the patient objected, in which case we wrote:  PUC (Patient Uncooperative)!

Although we are no longer allowed to describe physical findings in strings of acronyms (although we are apparently allowed to falsify that we actually examined the patient), there is one acronym I will never let go of, especially now that I am getting some practice being a patient.  It is:

WNL

Which is supposed to stand for

“Within Normal Limits”

When I was a student we had an inside joke that WNL actually stood for

“We Never Looked”

Only nowadays, it’s no joke.

Oh yes.  The Anorexic’s Nightmare.

I lost two inches because my spine in collapsing.  Therefore, my BMI is now 25!!!!   I’m suddenly overweight! 

How did this happen?

It’s not fair!  It was that rice I ate yesterday.  That must have been it.  Oh, wait!  I ate a cookie!  Gaaaaaa!  And I’m not bulimic, so I can’t do a thing about it! 

Gaaaaaa!!!


Ugh

Today I when my blogging alarm went off that was the sound I made, ugh.

Today has been a alright day. Physically I feel off, like my head is full of cotton balls. I hate that, it almost makes me feel like pulling back into a corner and crying.

I have accomplished some things though. I walked to the mailbox with my hubby. I had a shower. I painted my nails. Doesn’t seem like much does it? Yet all of those things  are hard for me to get motivated to do. Sometimes it can be a week or more between showers when I’m in a depressive place. It makes me feel gross and sad. Though I always look fine to everyone else. That’s always been important to me, calmness on the outside while screaming on the inside! Anyone else do this?

Hopefully tomorrow will be a better day physically. I’m not quitting smoking weed but I am going to give myself a few days break, my throat hurts. Plus I see my psychiatrist on Thursday and I want to be able to tell my shrink how I really feel.

I feel motivated but sad and I think the sad will go away as soon as my body stops bothering me.