To the Couple Who Asked About Bipolar Disorder

I occasionally submit posts to The Mighty, a webpage for people with disabilities. They have a section for mental illness.This is my latest submission about a DBSA meeting I went to last night.

You wanted to know information about your son’s bipolar disorder. At first you asked specific questions about the illness and I did my best to answer them. You told me about your son and I was impressed with his accomplishments and sorry to hear where he was at right now.

One of your questions stuck with me. Is there a physical test? Is the diagnosis just based on observation? It is a common question. I wish I had an x-ray or blood test that would show that my diagnosis is real. People can understand a broken arm or diabetes, but not brain disorders.

It was what I didn’t hear that struck me. I have heard parents with children who won’t get treatment, desperate for answers, trying to figure out how to help them get better. Instead, you sounded like you doubted he really had an illness. I could picture you using the “tough love” approach to get him to be more productive.

My mind went back to my own brother. He had a psychotic illness starting in the late 70s. My father didn’t believe in mental illness so he didn’t really get treated. He died young in an act that was either a reckless accident or intentional, I don’t know.

I told you about my brother. I feel guilty that he didn’t have the chances I do.

I pleaded with you to be gentle with your son. The words slipped out of my mouth that suicide is so common. It has been reported up to 20% of people with bipolar disorder complete suicide. I felt like I said too much and second guessed myself when I came home.

Now, that I have had time to think, I am glad I said something. I did not want to make you feel bad or scare you. I have not met your son and I don’t know where he is at mentally. But, you wanted information and that is a valuable piece of information.

My Family History of Mental Illness

I remember my grandmother in her baggy dresses that covered every inch of her body like the shrouds that covered the furniture when the summer folk had left for the season. My cousin Heidi was surprised when I told her that my grandmother — her aunt — had spent many hours of each day lying in bed.

“But she was always so jolly, so friendly.”

“Yes,” I said. “She could be like that. Like so many of us she knew how to fake happiness.” I do not mean that as a slander. I admire how she could pull herself together despite her suffering and be there.

I know my grandmother loved me. When I was young, she used to get in big fights with my mother for the way she mistreated me. The rows were long and loud — I would go to the very back of the yard so that I could not hear them.

My mother had her own problems: there was a deep-seated meanness in her. She disparaged my grandmother when we were alone together, complaining about what she thought as Stella’s laziness. When I was depressed, she was panicked at the thought that would do the same, so she hectored me about getting a job — any job — no matter how inappropriate or soul-killing it was. Once, when she was in the hospital with roof-busting high blood pressure, I told the doctor about our family secret. A psychiatrist prescribed Prozac. For three months, she was a nice person.

Where are you in “recovering” a life that is meaningful to you?

The biggest loss after I was diagnosed was my poetry. Before my diagnosis, I wrote a lot — I filled a ring binder with it. Two inches of verse, mostly free. Then I stopped because I believed that going to readings and writing it made my condition worse. And I believed that I lost the ability to write it. I did not stop, but my output was meager and sparse. One poem a year. Some years I wrote nothing. But a part of me yearned for the truth and beauty of a fine image. So last spring, I conducted an experiment. Thanks to a psycho-stimulant that gave me a renewed ability to focus, I cautiously began to compose free verse and haiku. To my joy, I did not explode into mania. I was not writing long intense blogs as had been the signature of my mania and I did not lapse into consequent depressions. So I have begun thinking: If I can handle poetry what about spirituality? Could I attend a church without turning into a prophet? Could I handle being a member of a congregation and not its priest? So I have been contemplating where to go, what denomination suits my temperament. That is the next signpost.

The Benefits of Bipolar Disorder

When I am manic, I get things done. That is as long as I am not running to the top of the inside stairs and down again seeking something that I cannot remember. Then it is The Great Eater of Time. My depression helps me to see what projects I have taken up that are pointless wastes like the schemes of making a million quickly by stuffing envelopes at home. I can detect what is rigged: I will not spend hours trying to win games that cannot be won or spend money on hobbies that I will never get around to finishing. I have ships in a bottle that I have not pulled the rigging up. I bought these in hypomania.

Depression has a wisdom about it, bitter at times, with a predictive power and insight into the motives of some men and women. I do not trust certain people when I am in depression: This often proves a smart thing.

Then there is the stillness that comes, a beautiful blue film that falls gently over my consciousness calling for silence and appreciation of the moment. If I shut down the voices that hector me for a moment, I find the peace that the racing thoughts of mania do not permit. I may feel fatigued, but I am not agitated as I am in a mixed state. Depression is a better place in the mind than mania or the vicious mixed state.

Reminded of Algernon

Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

A Letter to My Illness

You moved in when I was very young, shoved me into your corner, made me cry and when I cried you caused the kids to laugh at me, taunt me saying “Don’t cry Joel.” Sister Annette told me to buck up, to learn to be a man and hold the tears back. Damn you and damn her. I couldn’t say it at the time. Two years of living under the threat of her ruler, but the taunts were worse, hurt worse. The more they called me names, you and my parents reasoned, the stronger I would become but this practice was flawed. I played alone or with other losers. My mother criticized my choice of friends, calling them slow, hinting that they were retarded. Even among them I lived in a shell and the kids continued to wear at my head, trying to produce the streams of salt water they loved so much to see. I don’t know what brought you to make a home in my head. I don’t know why you made me sensitive to the twist in their voices. Was it the arrival of my two cousins who stayed for a year? If it was, you stayed beyond a year, brought me suffering. I looked at Jesus and wondered what was worse: crucifixion or this hell I was going through? If I was on the cross with Him, it was an absurdity.

Ends of a Mood Swing

My mania feels like a fishing line pulled taut to the breaking point.

My depression feels like I am that same fishing line let to fall in a curled mess and tossed to the bottom of the sea.

My mania feels like omnipotence — the power of God — channeled through my neck, my spine, my limbs, and my eyes.

My depression feels like my failure to be of any effect, like I have botched things up, crippled animals, alienated friends, brought evil into the world.

My mania feels like I can do great things, that I have a destiny that will change the world — bring peace, soften stone hearts, make people live in harmony.

My depression feels like a hole that sucks in everything good, that is no place to hide from despair.

My mania gives me energy to glide up the last spine leading to Everest’s summit and dive without a bathyscaphe to the bottom of the Challenger Deep.

My depression makes me stay in my house dreaming dark dreams.

My mania makes me love all humankind — especially women — and spark with anger if the purity of that love is questioned.

My depression makes me the lover of my pillow, my sheets, and my blanket, a friend of the curtained darkness, the noises of the day, and the deep emptiness of the night.

How My Condition is Changing Over Time

I haven’t had the problem with side effects that others have had. Except for the weight. The fucking weight. I went to my endocrinologist the other day and learned that my A1C levels had gone down five points. Of course, I over-ate to celebrate, but the maddening thing is that my weight isn’t changing: I continue to hover between 250 and 260 pounds! We have no explanation for this, my doctor and I, but it is noted.

Damn the weight! The blame falls almost entirely on my Risperidone, an antypical anti-psychotic. My mood stabilizers are kind on this point, but my Risperdal has transformed me from a reed shaking in the wind to a baobab — a huge club of a tree that eats up city blocks in Africa. The other night I took a nearly nude selfie. My stomach stood out like a bump on an oak tree. I looked like I was heavily pregnant, ready to drop a cat or a foal. The hair on my belly spread out from my navel like grass on a tiny planet. But I have been rewarded with calmer moods, gentleness, and peace of mind. I’ll find a way to reduce the weight.

Proposition 61

For the November 2016 election, we get to vote on 17 propositions. It can be hard to make up your mind about so many. One proposition, for better or worse, may affect many people who live with mental illness, through it’s effect on pharmaceutical prices. I’m not going to tell you how to vote; I see good people and organizations coming down on both sides on this one. But I am going to talk a bit about how to figure out how to vote. What would this proposition do, what are the pro and con arguments, and what sources of information can help you?

The first place that we can look to learn about the propositions, of course, is the California ballot pamphlet. Conveniently, for those of us who sometimes misplace things, you can also find the ballot pamphlet online at the California Secretary of State web site. Here is a link to the ballot pamphlet section on Proposition 61.

In the ballot pamphlet, you can find the full text of the proposition, a legislative analyst’s summary (which gives you an idea of the effect of the proposition that those of us who aren’t lawyers would have trouble getting from the text of the law), and ballot arguments that are submitted by proponents and critics of the proposed law. But it’s rather long, and can take a while to read all this information for 17 different propositions. If you don’t want to read through the whole ballot pamphlet (or even the whole pamphlet leaving out the text of the proposed laws), there are simpler summaries. One is actually in the pamphlet (see the first page of that link I gave, and just jump to the longer sections after reading that. Another is supplied by the League of Women Voters. Here is their information on Proposition 61, including official links to support and opposition.

Another way to evaluate propositions is to look at who endorses or opposes them. For this, you can find a handy chart by California Choices. California Choices does a round up of ballot endorsements by a wide range of organizations and papers each election. (California Choices’ page rounding up information about Proposition 61 is here.) Or, if you’re interested in the money trail, you can check out what Ballotpedia has to say about Proposition 61.

OK, I’ve talked a lot about sources, but I haven’t told you what’s in the proposition, or what the pro and con arguments actually are. Here’s a brief description from the ballot pamphlet:

Prohibits state from buying any prescription drug from a drug manufacturer at price over lowest price paid for the drug by United States Department of Veterans Affairs. Exempts managed care programs funded through Medi–Cal. Fiscal Impact: Potential for state savings of an unknown amount depending on (1) how the measure’s implementation challenges are addressed and (2) the responses of drug manufacturers regarding the provision and pricing of their drugs.

The crux of the controversy between pro and con (and there appear to be organizations and people I respect on both sides) comes down to “(2) the responses of drug manufacturers”. Proposition 61 is aimed to ensure that drug manufacturers lower their prices, for certain purchases the state makes, to those supplied to the US Department of Veterans Affairs. The connection to mental illness and mental illness advocacy, here, is the fact that some people on Medi-Cal require psychiatric medications, and Medi-Cal programs that don’t involve managed care are covered by this proposition. And lower prices for the state could also mean lower co-pays for patients. Proponents argue that the proposition will lead to lower prices and an end to price gouging like the EpiPen price hike. But, since the proposition dictates what the state can do, not how drug companies will respond, lower prices aren’t the only possible consequence. Opponents of the measure argue that it could, instead, lead to higher prices for veterans (if drug companies decide to raise prices for the US Department of Veterans Affairs rather than lower prices for the state of California), or, alternatively, that pharmaceutical companies could simply refuse to sell some medications at the lower prices, thus forcing the state to restrict what drugs it covers. The end result, say opponents, could be to increase drug prices and reduce patient access to needed medicines.

Whose argument do you believe? You can follow the links I’ve supplied (or add your own sources), weigh the arguments, see who’s supporting each side, and make up your own mind.

 

Turning to others

It’s hard for me to get the words out when I’m having a rough time. I can be pretty vague. I don’t know who to confide in about my symptoms and feelings. I don’t want to be a bother. Some people will offer platitudes or react more than is needed. I have to trust someone to keep things confidential and hope they will not dismiss me.

I was traveling recently and started having a few breakthrough psychotic symptoms. I didn’t even want to talk to my husband about them. It just takes a lot of effort and it never seemed like a good time.

I contacted a talk line and they told me to think “positive thoughts” and that negative things happen when you think negatively. I am not sure what I was looking for; maybe some reassurance I could see how things go over the next couple of days. Whatever it was, positive thinking wasn’t helpful for me. I think it was just some of the stress of traveling because the symptoms stopped on their own.

So, if I do turn to you, it means I trust you. Not that I expect you to have all the answers. But I do need you to listen. Sometimes talking doesn’t help. Other times, I just need someone to reassure me I will get through it.