A Cautionary Tale

Whether you've been diagnosed with bipolar disorder, thyroid cancer, or have never had a funky day in your life, this kind of thing can happen and does, all the time.  Without advance directives you may be at the mercy of the ER and hospital, should a serious emergency arise, and you have no one present who will speak up for you to say, "She's bipolar.  Here is a list of the medications she's on.  Here is her psychiatrist's name, here is her primary care physician's name and number.  She has a DNR"  Everyone of us should carry a card that says at least this much about us.  Because if you have family that feels shame or denial about your mental illness or any illness and those people can speak for you in a situation where you can't speak for yourself, their shame and denial can kill you.

I know a man who has been overseeing his elderly sister's bipolar disorder.  Due to his diligence to get her the best possible psychiatric care, she was on the medication necessary to control her bipolar psychosis and other bipolar symptoms.  Anyone on her cocktail of drugs might seem a bit slow on the uptake, a bit casual about disorder and mess.  To a religious and disapproving sister who didn't believe her sister was psychotic, only uncooperative and lazy her sisters psychosis would seem like another kind of illness altogether.  The brother was out of town when the bipolar sister had a crisis in the presence of her disapproving sister.  Psychosis was misdiagnosed at the ER and her medications were not administered making her psychosis worse.  She was admitted to the hospital, but not the psych ward.  She was six weeks in the hospital developing strange symptom after strange symptom that eventually developed into pneumonia and then something that made them think she needed her gall bladder removed, or some other surgical procedure, and then an infection and then, death.

The man was notified of his sister's hospitalization, probably by the sister who did not believe in bipolar disorder.  Because of HIPPA laws and the strange politics of family dynamics he was not given authority to intervene in any decisions about her care.  He watched helplessly as his psychotic bipolar sister died inch by inch. 

Her funeral came a couple of days after the funeral of Wayne, his friend, the pianist who died in a car crash after the Salt Lake Jazz Festival.  I can't begin to imagine his grief.  But I can imagine my own death in circumstances where I have a stroke or accident that lands me in the hospital with no family at all,  and my friends are unaware that I'm in need of their help.  I'm a solitary woman who seldom leaves home.  But when I do, anything could happen.  Life's messy like that.

When I finish this I will type up a list of my medical conditions, all medications I take on a daily basis, the names and numbers of all my doctors, the name and number of the friend to call in case of an emergency.  I will keep copies on me at all times, just in case.  I don't fear death, but I do fear mistreatment in a hospital if they do not know my history of bipolar disorder.  I also fear mistreatment in a hospital if they do know I'm bipolar.  Medical professionals are not immune from mistreating the mentally ill.  I know.  It happened to me in a much less serious circumstance when I was in the hospital with diverticulitis.  There are people who have no compassion for the mentally ill in every ER in the country. I know,  I had a roommate who worked in an ER and for most ER staff, someone who is crazy and needs emergency medical attention is seen as much less deserving of sympathy than almost anyone else.  We are just a pain in the ass.

Shopping's a Symptom?

Show me a woman with a real serious shopping compulsion and I'll show you a bipolar woman.  If that woman's mother found her life's greatest pleasure shopping, I'll show you the closest genetic link, though there will be many in the lineage of that family. It's probably the most under-diagnosed of the mental illnesses and yet it seems everyone's bipolar these days. It's one of the few genetic illnesses with two genetic markers, which means that if there is one bipolar person in your family, there will be many more, diagnosed or not. 

Compulsion (mania and psychosis) and the complete absence of compulsion (depression) are the two poles of bipolar disorder.  With compulsion comes boundless energy.  The joy of having both energy and the purpose of compulsion feels great and no one in a slightly manic swing will want to come back to earth.  The compulsion to shop takes me when I'm transitioning into hypo-mania.  That's when I have boundless energy and feel a strong sense of well being and optimism.  "Money's like a river; it has to flow.  Spend it and more will come."  It's the "zen like" place where I have absolute faith that it will all work out and I need those Gucci high heeled boots. It would be great if I used that energy to clean my closet and scrub all the floors since I don't have enough money to quite pay all my medical bills.  The impulse to shop, especially shopping without a list (for things I don't really need) should be a signal for me to check in with my therapist and see if I need an appointment with my shrink for a med check. Problem is, it feels so good.  Hypo-mania is like the very best drug.  This is how life is supposed to feel.  I feel charming, but I'm probably a little too intense, a bit too loud for most people.  It might be that's when I start thinking that my sex drive isn't dead after all.  Another red flag for those with bipolar disorder is an intense and perhaps inappropriate sexual appetite that might lead to disastrous sexual encounters.  Yes, encounters with an S. Yes, without protection. Yes, with much younger men. Yes, possibly married younger men. Yes, maybe married to your sister.

A lack of impulse control and a high tolerance for chaotic disorder is a another symptom of someone in the hypo-manic phase of the illness.  All these things might seem to you like personality. And yes, there might be a narrow line between being a charming, flirtatious, fast-talking smarty-pants, but then if you have no boundaries at all, and you feel compelled to fuck your sister's husband, you are probably at risk of driving the bullet-train that is your "personality" off the cliff.  We can be incredible drama queens.  We can be very destructive and self-destructive.  But then our lives have probably been quite trying, not to mention embarrassing for our families.  As children (if female) we are the ones who get bullied and abused.  We may be the family's scapegoat.  We might be the child who is sexually abused.  And as we grow into our teens we will likely become the ones who cut ourselves so we can feel something, so numbed by stress and psychic pain are we.  That's not to say that every child who is bullied at school and abused at home is going to be bipolar.  But a high percentage of female bipolar adults had that kind of childhood. We are the vulnerable ones, no matter how brash we may seem.

So what does this have to do with you?  Bipolar disorder is under-diagnosed, and if diagnosed, often kept secret.  And in the early stages of depression you do feel sick.  Depression may begin with a strange fatigue, a headache that won't go away, a low grade fever that lasts for weeks.  You ache all over.  These symptoms have sent me to the doctor many times, and each time tests have been run and one of the things they check is my thyroid.  Before any doctor diagnoses depression other things have to be ruled out.  And in the testing phase, they may find a thing or two.  I once had a one-time sugar spill in a urine sample.  This was so perplexing to my doctor that she had a complete endocrine work up done.  I was desperately hoping that it would be an endocrine problem, anything but another depression.  But there is nothing wrong with my endocrine system.  I do have heart problems, but they have never been mistaken for bipolar symptoms.  Depression is serious.  It can't be dismissed as just laziness.  If you're the only one in your family who's ever been seriously depressed, it might be that other members of your family tend to be a bit on the manic side.  If mania is the predominant side of bipolar disorder for those in your gene pool, chances are those folks will never be diagnosed.  Because who ever thought dynamism was a bad thing? Those who mostly swing towards mania are energetic, fun in a breathless sort of way, and productive powerhouses.  They are often greatly admired.  And they can be mean, so woe to the depressive bipolar child who lives in a family of manics, for there will be no sympathy there.  We just seem terribly lazy to the rest of our lunatic relatives.

Bipolar disorder can be managed quite well with the right drugs.  But finding the right drug might take a bit of trial and error.  And once the right drug is found compliance is often a problem.  Few bipolar drugs are weight-neutral.  I carry forty pounds of drug weight.  Zoloft makes me lose weight, but I tend to get a bit manic on it.  Wellbutrin can help you quit smoking but made me psychotic.  Most bipolar drugs keep me from dreaming, and for me, dreaming is one of life's little miracles.  So I'm willing to trade being thin for being able to time-travel in my sleep.  For most women the weight gain may make compliance problematic.  For men, just admitting that they have a problem that needs medication is astonishing in itself.  Men experience bipolar disorder differently than women.  Or at least they shop for different things like cars and boats and tools and such.  Men may be violent when manic. The high of a manic stage can manifest as aggression for both men and women, but men express their aggression more often with fists, and most bipolar men think having an insatiable sex drive is the ideal anyway so what's the problem there?  Inappropriate sex?  Are you kidding?

I've been in a lot of group therapy for bipolar disorder and I have never seen a man in any of those groups. And it's not because they were women-only groups.  Men don't seek treatment unless repeated incarcerations find them negotiating further jail time for therapy and enforced drug treatment.  A lot of men would rather do jail time than admit they have a mental illness and have to take drugs that take the thrill of risky compulsions out of their lives.  Because the compulsion for risky sexual behavior is a lot more fun than feeling just normal.

We still live in a time of shame when it comes to mental illness.  Many of us just self-medicate to try to feel normal.  We smoke cigarettes (which are a mild antidepressant) and drink too much.  We smoke pot and drink too much.  We do meth so we can have the energy that depression takes away, and drink too much.  We will try damn near anything to feel "normal," except take an antidepressant or anti-psychotic that will stigmatize us as crazy and make us gain weight.  But remember, along with a high degree of creativity we also have the highest rate of suicide for any illness.  It is our leading cause of death before the age of fifty.  After that we're the real experts on the illness.

How To Survive In Difficult Times On Very Little

I came undone taking care of my mother during her dementia. She had given all her life savings in the last months of her days in Santa Barbara to a scam artist. And for the first time in this very smart and frugal woman's life she was buying cheap costume jewelry thinking it would up the odds of her winning the jackpot. Same with The Publishers Clearinghouse Sweepstakes. I started getting magazines I'd never read and didn't want because she kept adding to the number of magazines she subscribed to each month in a desperate desire to strike it rich. This was not the woman I'd grown up knowing. Maggy would never have done anything that crazy. She'd been saving her whole life to retire owning a house that was paid for. Never once making a purchase on a credit card she couldn't pay off that month. She drove an old, but well kept car that got good milage. And she worked into her mid-seventies. This silly behavior would have been mocked by the Maggy I knew.

Then I got the call from her that made it impossible to ignore this change of behavior. She called to tell me she'd won $500,000,000. I started to say something but before I could get a word out she said, "And I'm giving you a million." There was an uncomfortable silence while I searched for the right way to ask the question "How did you win five hundred million dollars?" I said, "Thanks Maggy. That's really generous of you." Easy does it. This is important. Don't spook her.

Then she said she was sending in the last check for the taxes on her winnings... Oh shit! I said, "How much are the taxes on FIVE HUNDRED MILLION DOLLARS? I tried very hard not to shout, but I was shouting in my head. Don't spook her, say nothing to shut her up. Remember she is stubborn and secretive.

"So where are you sending the money?"
"To Canada. I won the Canadian Lottery!"
"Have you already sent the money?"
"Yes."
"Did you write a check?"
"No, I sent it in in money orders."
"How much did you have to pay?"
"It was less than you'd think."
"Could you send it all at once?"
"No. This was my last payment."
"So, How much was this payment?"
"Only $30,000."
"Wow!"
Silence. Cough cough, breath holding, waiting for her to say more.
"So when do you get your winnings?"
"Christopher is going to come get me with the check. Then I get to pick the place I want to go to have the winner's photos taken. I'll be in the paper."
I bet you will. "Who is Christopher?"
"That's a stupid question."
"How could I know who Christopher is?"
"Well he's the representative of the Canadian Government." Oh crap, oh crap... We're fucked now.

And by the time I exercised the joint signature on her Salt Lake checking account, she only had $28,000 left. At the end of the first three years of her very slow death by loss of brain function, we were living on my credit cards. And every month I got offers for more credit cards with 0% interest for six months, no fees, bla bla bla. "Come, transfer balances from your other cards and make one easy payment." And that is how we survived until I could no longer make my minimum payments. Maggy qualified for Medicaid and then we got a little in-home health care. I slept during the hour that the home healthcare worker was with her.

And then I crashed for good. Twenty four hours in the ER for round the clock observation and two weeks in the looney bin isn't cheap. Then when I got out, I couldn't find my way around the block. What once had been as familiar as my own hand was an alien landscape. I was heavily medicated. And thus began the real agoraphobia. I could no longer work at all. I found shopping torture. I moved through my days like a zombie. And once a month I had to go to the shrink and get my meds checked. But after the bankruptcy and into the ensuing poverty I learned how to eat very cheaply but fairly well. I discovered the used meat section and the used mushroom section and the used baked good section and the... Whatever is about to expire gets deeply discounted. It's put on sale before it ends up at the shelter or food bank. It isn't really called "used meat." It's called, "reduced meat," and "reduced spinach" ... I can buy a half priced pork loin and cut it into sections, wrap very carefully and freeze. I do the same with chicken thighs, and split breasts with ribs in. Bread is divvied up and frozen, bagles too. Once in a great while, glazed donuts. I pay full price for my frozen blueberries and pineapple, but once in awhile I buy frozen peas marked down. I splurge on organic milk. I know it's crazy for a carnivore woman to care that her milk is organic, but it tastes better and comes in cartons, not plastic. I buy a lot of fruit and eat fruit salads. I almost live on salads in the summer.

I will no longer walk in a store without a shopping list. There are no shopping sprees, no impulse buying anymore. Everything but underwear and shoes comes from thrift stores. This is not shopping in the trendy little consignment shops or slightly used couture. No this is thrift store shopping. No more expensive high heels or sandals. A new pair of Teva sandals every summer. That's it. Oh, and I pay for the occasional matinee movie date.