"What happened to his ear?"
My nine-year-old daughter, Amelia, and I are looking in an art book at a picture of Van Gogh's Self-Portrait with a Bandaged Ear.
"Well…he cut if off," I begin. "He was angry, and he thought it would impress this girl that he liked."
"But why did he think that?" She squints at me.
How do I explain this? I tell her that he was confused sometimes, and heard voices sometimes, and was sick in the way that people in the hospital were sick.
"I mean… like the hospital I was in," I say. "Remember? Like my friend Pete who heard voices tell him what to do, but the voices weren't really there." She remembers the hospital, Pete and when I was very sick like that. That's enough for her. We go back to looking at the book.
I'm glad that I can explain this without using the word, "crazy," even one time. That was how I learned about mental illness: people went "crazy," "flipped out" or were "loony," which made it sound more than just scary -- it made it impossible to understand, predict or treat. If someone went crazy… well, that was that.
And yet mental illness ran in my own family. My mother had been hospitalized for depression right after I was born, and had even received electric convulsive therapy. We weren't allowed to watch One Flew Over the Cuckoo's Nest when it was on TV. She wasn't like other mothers in many ways. She talked to herself sometimes, didn't get up with me in the mornings, screamed at people and sometimes didn't hear anything that was going on around her -- but no one ever mentioned any of it. This was supposed to make it seem like nothing was wrong and that nothing had happened, but instead it turned into a big, mysterious shadow. It wasn't until after my daughter was born that I found out the details. That's because I ended up in the hospital after a suicide attempt when Amelia was three months old.
I didn't know what was wrong with me. I only knew that I was in so much pain I couldn't stand it, and that everyone would probably be better off without me around. I didn't know there was a name for what I had or that medications could help me or even that mental illness often ran in families. I remember telling someone on the crisis line a few nights before the suicide attempt, "I can't take care of my daughter. All I do is cry. I either need to get on some pills, kill myself or become an alcoholic." The six-week waiting period for the psychiatrist was longer than I could bear.
But instead of one trip to the hospital that was kept hush-hush, Amelia saw me go to psychologists, psychiatrists, hospitals and support groups from then on. She knows what it means when I tell her I'm not feeling well. I try to explain in the most basic terms that I can: I feel very sad. I feel tired. I'm scared. I can't sleep. I feel like I've had too much caffeine. By breaking it down like this, I'm also forced to really examine my feelings, and when I do, I can get a better idea of what I need to do. So it helps me, too. However, it's hard to be a mom when I'm not even feeling like a person.
After years of therapy, different medications and several hospitalizations, I was diagnosed with Bipolar Affective Disorder Type II, but I've learned that absolutes are rare when classifying this or any mental illness. The bible of psychiatry, the DSM-IV, has huge lists of symptoms beneath each category, and in order to be diagnosed with a specific illness, a person has to meet a minimum of the criteria for that illness; it's a giant checklist. Unfortunately, many of the symptoms can fit into more than one category and who can really say the exact number of days or weeks they've been depressed? When I'm in the depths of depression, there's no convincing me that I've ever NOT been depressed.
Suffice it to say that the medication I've responded to the most favorably is for BPAD Type II, and from what I've read about it -- compared to unipolar depression, borderline personality disorder, cyclothymia or dysthymia -- I get a strong feeling of, "Hey, that's me!"
Bipolar disorder used to be referred to almost exclusively as manic-depressive illness. That name describes the basic symptom as mood swings, but it's more than moodiness. A depressive episode can become completely debilitating, sometimes causing those who are manic to believe that God is talking to them, they can fly or -- if the light turns green when they get to the intersection -- it's a special message for them. They can also go for long periods of time without sleep. My favorite description is one I got from an Internet newsgroup: you know you're bipolar when you put on a mood ring and it explodes.
In my case, having BPAD Type II means I go through periods of deep depression and episodes of hypomania (the symptoms of hypomania are similar to those of mania: decreased need for sleep, euphoria, extreme irritability and distractibility, risky behavior, overspending, increased sex drive, racing thoughts, rapid speech and restlessness -- but in a less severe form. The difference is that someone experiencing hypomania can still function in daily life, and probably doesn't hallucinate or have delusions. It doesn't impair someone the way mania does). I tend to get very agitated when I'm manic. The smallest things get on my nerves, and I can not keep up with my own thoughts. Another symptom of mania can be grandiosity, which I never thought I had until one day I told my therapist if I could just have fifteen minutes with Jesse Helms, I could set him straight on things (I can laugh now, but I really did believe that). Mostly, I can tell if I'm manic because I can go for days without sleep, feel over-stimulated and unbearably irritable.
So, when a mom is fighting demons that either want to keep her down or push her beyond her normal physical limits, how does she take care of her kid? I've been doing it as long as I've been a mom, and I can honestly say that I don't know another way. The most important thing has always been Amelia's safety while I'm out of control or in the hospital, and fortunately I've been able to trust her father and family members to take care of her during those times.
But when I had to take care of her, and my depression was at its worst, I did whatever I could. There was a period of a week or two when I would wake up with her, take her to school, come home, take two or three sleeping pills and sleep all day. Then I'd pick her up from school, spend a few hours with her in the evening, take a few more pills and sleep for the night. On the weekends, we spent our time reading or walking around the mall or watching videos. We went for a lot of long drives. I would never recommend this method. It was horrible and frightening. When I finally confessed what I was doing to a friend, he had me flush the pills and get back to the hospital.
Then I resorted to almost the same thing, but without the pills. I just gave up doing anything that wasn't directly related to taking care of her. And honestly, I was proud that I could do that much. When the depression isn't so bad, I simply prioritize. What is the most important thing she needs? What do I need? What can I do to work towards both? This meant lots of take-out dinners, taking her with me to therapy appointments and getting help from anyone that offers. She often goes to birthday parties with her dad, or spends weekends with her grandparents.
During these times I try to tell her that I am sick and don't feel well -- not sick with a cold, but sick with feelings. I tell her that's what the therapist and the medicine I take help me with. I tell her that I sometimes feel better and then feel worse again, but that I will always be okay. I also tell everyone else who cares about her or me what is going on. I make sure that she had someplace to go on the days I can not be with her. It never feels like I'm pawning her off on other people; we all want the same thing, for me to get better and for Amelia to be cared for.
My support group is small, but each member is indispensable and offers unconditional assistance. When I'm manic, agitated, irritable and keyed up, I can't be around her for very long. I hate this more than being depressed. I love her and I know that, but my thoughts fly around and everything sets me off. I've thrown things, yelled, screamed, pulled out my hair, plotted my own suicide, cut myself, gotten drunk and sped down the highway at 95 miles per hour. I can NOT be doing those things with my daughter around. I shouldn't be doing them anyway, of course, but it's happened.
During these times I've used the TV, the neighbors, friends, family, whatever and whoever would work until I could get help. But that requires such honesty with myself. Imagine telling a friend, "Please take care of my daughter for a few hours while I rip apart all the clothes in my closet" or "You and Amelia need to get out of the house before I start throwing things at everyone."
Amelia can be doing nothing more than washing her doll's hair and the on and off of the faucet will send me into a frenzy. That's the hardest part and I feel such guilt for it. To calm down and come out of it I need quiet, stillness and rest, and very often a tranquilizer. I have not yet found a way to do that and be with her at the same time.
During either a hypomanic or depressive episode, thoughts of suicide can creep in. They slip in slowly and then take over gradually. According to some researchers, people with Bipolar II Disorder are more likely to attempt suicide than those with Bipolar I. In fact, while less than one percent of the general population dies from suicide, nine to fifteen percent of patients with affective illness kill themselves. One study showed that fifty eight percent of bipolar patients have attempted suicide at least once. How can a parent ever consider suicide? I never understood that before, but I know that when I was suicidal, I was certain -- without any doubt or question -- that Amelia would be better off without a mom than with me as her mom. It hurts to even think that now, but part of it was about saving her. I strongly believed, and could not be convinced otherwise, that having me as her mother was damaging to her. Now I know that's not true.
After an episode of suicidal ideation, I knew I had to be strong and prepared for those thoughts the next time the illness engulfed me and told me Amelia would be better off without me. So, I repeated to myself, "A mom in jail is better than a dead mom. A homeless mom is better than a dead mom. A crazy mom is better than a dead mom." Now when I get that low and hear the voice tell me I should do what's best for Amelia and kill myself, I know it's a lie and pull out that mantra until I can get help.
Because Amelia has been raised with all of this as a fact of life, she understands when I tell her I need help, or that I can't be left alone, or that we have to go to the therapist's instead of to the mall like we'd planned. She sees me come out of it every time, and we do get to the mall eventually, and do fun things together, so she trusts me with this.
Last summer I changed my address and my medications got lost in the mail; I had to go without them. I was walking on the edge, having what is called a "mixed episode," which is simultaneous symptoms of both depression and hypomania. I just couldn't take care of Amelia all day. So we scraped together all the money we could and had her enrolled in a day camp for a week. Before we did, though, I explained it to her. I told her I wasn't feeling well in the same way that I used to not feel well when I went to the hospital. She told me she would help take care of me. She said for me to stay in bed until I was well, and she would do whatever I needed. She got the bell I'd given her for her bike and gave it to me so I could ring for her if I needed help. Then she had her wizard finger-puppet cast a "get well spell" on me. My mood stabilized, as it inevitably does.
When things are "normal" and my emotions are in check, Amelia and I are just like many other mother and daughter teams. We go to the library, work on sewing projects, play with the cats, swim, tour museums, eat pizza and get behind on housework and homework. We play, laugh, cry and talk. I worry sometimes that she will inherit this disorder or another, and I watch her for signs (though she's young for any symptoms to start showing). I feel confident that if she does end up suffering from depression, she will know that help is available. She might be able to identify it earlier than someone else, and she'll know she can talk to me or a doctor or a friend. I want her to be as prepared as possible.
During my various hospital stays I've had to participate in Occupational Therapy. OT is an hour-a-day of arts and crafts to keep patients "occupied" (when you're depressed, it is tempting to stay in bed all day). Patients can work with ceramics, paints, leather and simple wood kits. Usually I put whatever it is I've made -- be it a windowsill planter, a ceramic goose, a sun-catcher -- somewhere out of sight. It's just so embarrassing to admit, "They made me make this while I was locked up." But one time I made a wall-hanging. It's just a thin sheet of copper with the image of a sea-shell hammered into it, stuck to a frame and covered with shellac. Amelia saw it and insisted I give it to her. I explained when and where I made it, and she told me that she wanted me to get the stuff to help her make one too, but she still wanted this one. She hung it on her bedroom wall and when I see it, I know this illness isn't a secret or anything to be ashamed of. It's just another part of a full life.