At some point in my life, I don’t remember when, I waded out into the ocean. Maybe it was during one of our vacations to Hawaii when I was kid. It must have been, because there was a reef out in the distance. It looked a mile away, but to a child everything looks bigger than it really is. You just don’t realize it until you are an adult.
Waves crash over reefs much differently than they do on the beach. By the time the wave reaches the beach, it has lost most of its energy as the force of the wave is pushed up along the sand. When you walk along a beach, the waves die at your feet, giving up the last of their energy before falling back into the ocean, the water pushing up on the waves coming in above, repeating the cycle, endlessly, until the oceans run dry. The life of a wave is measured in billions of years. They will live until the world ends.
Beyond the reef, the waves are small, creations of wind and currents. Inside the reef, they are quiet, flat, peaceful, like a bullet casing dropped from a gun after the projectile is long gone.
But at the reef is the collision of heaven and hell. The waves coming over the reef, pick up power and strength, the full force of the open ocean squeezed across the narrow space between the coral and the surface. It is a violent reaction.
I remember walking out into the lagoon. The water was shallow, inviting me to walk. When the water reached my chest, I turned around and the shore seemed so far away, so far I could only see it during the dips in the waves. I was alone. I felt alone. At first there was the instinct to turn back, but I didn’t. I turned back to look at the reef ahead of me. It seemed to so close. For some reason, it felt like it would be an accomplishment to reach it. I needed to reach it, as if reaching the open ocean meant touching every point in the world. So I kept going.
The breakers coming over the reef seemed small, broken apart and melting through the coral that occasionally appeared out of the water. My feet left the sand. I was treading water now, so close.
And then I saw it.
This wave, I knew instantly, would not batter itself out upon the coral. This wave was large enough to cross the reef unimpeded.
I kept waiting for it to get smaller, but it wasn’t. It seemed to be getting faster, bigger. I could see the water sliding up the wall, the “pipeline” as surfers call it.
I had nowhere to go. I would never make it back to shallow water, where I could put my feet down, in time. I could not turn left. I could not turn right. Either way I could not outrun it.
I knew it was going to break right over the top of me.
And then I felt coral under my feet. I had been sucked into the edge of the reef as the wave pulled water toward it. I could not dive under now. If I dived under, the wave would pound me into the coral, which would cut me.
There was nothing to do. But even when there is nothing to do, there is still a choice. There is always a choice. I could have started back, swimming as hard as I could for shore.
But I had no fight left in me. It was hard enough just keeping my head above water.
There comes a point in every person’s life when your options are down to two: fight vainly or let the wave hit you.
Suddenly, I felt a sense of clarity. I knew what I was going to do. I was going to let the wave hit me. It was inevitable. Whatever would happen, would happen. I felt ready. I felt at peace. I turned to face the wave.
The wave is coming again.
Things have begun to slip again, as they must always do. Schizophrenia is like the waves. It will go on, crashing into the reef of medications and therapies, which provide the shelter from its ferocity, weaken to the point of seeming to die at our feet, before it rolls out again.
The rolling out is always the scariest part. I hate feeling the water sucked back out between my toes, running back out, because I know what it is coming. They say that before a tsunami the water at the shore is drawn away. It exposes everything, everything that is normally covered. For a few moments, the seabed is naked. Every fault you had is on full display. But the wave is coming back.
I saw the wave coming several weeks ago, but waves are deceptively small when viewed from shore.
First, the light was growing dim and the leaves were falling dead from the trees. Autumn. It was the sign that we were entering the most difficult time of the year for Jani. Every year since Jani’s illness became acute we had dealt with this but every fall I still find myself hoping that this year will be different. I hate autumn because it is the longest time to spring. It is beginning of the our passage as a family behind the dark side of the moon.
Seasonal Affective Disorder, as it is known, is common even among those who don’t have a mental illness. It is caused by the declining amount of daylight, and more importantly, the weakening of UV light as the hemisphere tilts away from the sun. SAD, a very appropriate acronym, causes feelings of depression and apathy. We want to sleep more, to hibernate.
But for October, so far, so good. Jani was doing well with her two hours of school per day: her hour of occupational therapy and her hour of academic learning with a teacher. She was doing well.
I was (and still am) teaching three courses at CSUN, three courses I had never taught before. I have not done well. I have no trouble talking in front of a class. But I didn’t prepare well enough, because I had no time to prepare in the summer. Because of Jani, I could not go the composition orientation, so I didn’t learn what I needed to do for this class. I winged it, only to discover more than halfway through that I was not preparing the students for their final portfolio. For the first time in my teaching career, I could not manage to learn my students’ names. They began to look the same to me. I would give assignments I hadn’t thought out very well, because I have no time to think, and then have to change them halfway through. I was struggling far more than I did last spring, when I returned from taking family leave in Fall 2009. For the first time, I was shortchanging my students, giving them either poor feedback or no feedback at all.
I hate the end of the month, because it means that the new month is just around the corner. I hate the first of the month because it is the day that rent is due, and so often I don’t have it. I have it for one apartment (I make enough to pay for one) but not for the other. In October I was able to pay both on time because I cashed out my retirement account. But I knew that I had nothing left to cash in for November. Bodhi’s preschool costs $200 a week, which we are late on too. He has to go to preschool, so Susan only has Jani in the morning when I go to teach. He also needs it for himself. His speech has taken huge leaps. He is much more verbal now, asking for things with words. He is interacting with other kids. He is socializing. He is getting the learning that I taught Jani when she was his age but now cannot teach him. I don’t have the energy left.
But with Bodhi in preschool in the morning (Jani goes to school in the afternoon because her teachers teach their regular classes in the morning) we were making it.
Two weeks ago, Jani developed diarrhea. Susan called me at CSUN to tell me. Jani was distraught because she had messed herself. She wanted to take Jani to the doctor. It had only been one day, so I wasn’t worried. It was probably just a stomach bug. Still, I rushed home from work, blowing off my office hour, because Jani needed me. She was crying for me. When I got to her apartment, she was bundled up on the couch, crying that she needed the doctor. The doctor’s appointment was still two hours away. I felt it would be a waste of time anyway. The family practice doctor would just tell us to keep her hydrated. Susan wanted to take her to the ER, but that would take longer than waiting for the family doctor’s appointment and besides, they wouldn’t treat diarrhea as an emergency.
Whenever Jani gets sick, it can trigger her psychosis. She doesn’t know how to deal with it. It is new. And anything new, any deviation from her normal schedule, opens the door to the psychosis.
After a few minutes, Jani wanted to go out again. All the crying stopped. “I can’t stay home,” she yelled. Her apartment is filled with toys she never plays with. She needs directed activities all the time. She cannot self-stimulate.
This didn’t mean she wasn’t sick, though. Jani is not that in touch with her body. So she will go even when she is sick. This is dangerous because it means we usually don’t know when she is sick. Once, when she was four, she suddenly collapsed in a Target and said she couldn’t walk anymore. It turned out she was running a 103 degree fever. She can look well, but be very sick and we have no idea because she doesn’t slow down.
We went to the doctor, who gave us a stool sample kit and told us to give her Immodium. I was actually so broke I couldn’t even buy the Immodium. It didn’t matter anyway. She had no diarrhea with me.
There was none through the weekend.
I thought it was over.
Then it happened again on Monday morning. Susan and Jani have started coming with me to campus on Mondays. Jani feeds the squirrels or they go to the mall while I teach. Again I get a call that Jani has had diarrhea. I can hear her crying and screaming in the background. Again, I have to leave campus early.
We go home and clean her up. She has no diarrhea. In fact, I have yet to experience it. It is only happening when she is with Susan.
Later in the day, I drop her off at her occupational therapy, bringing a change of clothes (just in case). The staff were concerned about letting Jani play on the equipment, somewhat understandably, because they had just cleaned all the balls in the ballpit after another child had an accident. I could tell they weren’t comfortable with me bringing her with diarrhea, but I told them she hadn’t had it since this morning. But the truth was she needed her schedule. And I needed to get back to campus. I had my Monday afternoon class to teach and I had a Chinese student waiting for me who can barely comprehend English and whom I am trying to help pass when what she needs is an ESL course (which CSUN doesn’t have) and I have no training in ESL. They didn’t want me to go. But goddamn it I have Jani all the time. They only have her for an hour a day.
I am almost back to campus when Susan calls me to say that Jani had diarrhea again. She is taking Bodhi and going to pick her up. I feel paralyzed. Should I go home? Susan wants me to come home. But this class only meets once per week and I need to teach it. I can’t cancel it. I call the doctor, trying to get the results of the stool sample, but am told she is with a patient and will call me back. I call Jani’s psychiatrist. Same thing. I am about to turn around and come home when Susan calls me to tell me that a friend is coming over. She will buy Immodium. We still have no money to even pay ten bucks for a bottle of Immodium.
The next day I don’t teach and I am with Jani all day. No diarrhea. On Wednesday I have to teach again. Again she has diarrhea in the morning, but not in the afternoon when I am around.
On Thursday, Susan takes Jani. It is my day to write my book. I have just gotten back from the dog park with Honey when Susan calls to say Jani has diarrhea again. They are going to see Jani’s psychiatrist. Jani has her weekly appointment on Thursdays but it isn’t for another hour. Susan calls me again to say Jani has diarrhea in the waiting room. I want them to wait for Jani’s psychiatrist but Susan is fed up with no one taking this seriously. She is going to take Jani to the ER at UCLA. Susan doesn’t know if this is the medications.
I look up Jani’s meds.
Clozaril: more likely to cause constipation
Thorazine: can cause constipation
Lithium: Diarrhea can be a sign of lithium toxicity
I start packing a bag for her, including her favorite stuffed bear, Hero. We don’t know if she is going to be admitted. She is not psychotic enough to be admitted, although the warning signs are there. She complains of her ears being itchy all the time. One day while driving I catch her trying to shove a straw in her ear. When I take it away, she tries again with a lollypop stick. I take that away too and warn her she could puncture her eardrum. Her only response is “my ears are itchy.”
She also started saying that she hated school, that they were putting too much pressure on her. So I went and observed. They weren’t.
But Jani isn’t doing the things that used to get her admitted, like lying down in the street or talking about jumping off buildings or attacking Bodhi.
I pick up Bodhi and drive to meet Susan and Jani in the ER, cursing myself for not taking this seriously. It is so easy to forget that these meds are powerful stuff, because she functions on them, running around without a problem. What if the lithium has damaged her? I read that lithium is not supposed to be used for more than 3-5 years because of risks. She hasn’t been on it that long, but what if…. And if it needs to be pulled, what then? It works.
I call her pediatrician and ask her if she is aware that diarrhea can be a sign of lithium toxicity. She was not. Big surprise. Pediatricians and family practice doctors know nothing about psychotropic drugs. They treat Jani like they would treat any other kid, forgetting that Jani is on enough meds to put an adult into a coma, just so she can function. Pediatricians are so used to the normal childhood illnesses that they don’t react when Jani comes in with diarrhea. Just give her Pedialyte. That’s what we tell parents. Except that their kids aren’t on potentially lethal doses of medications. They look at her and see an active little girl. She can’t be sick. She is still running around. But she has always been like that. And yes she can be sick. She could be dying and we wouldn’t know it.
We have never found a pediatrician or family practice doctor we have been happy with. Every one of them just stares blankly at us when we give them the list of Jani’s meds.
I reach the ER and trade with Susan, her taking Bodhi and me staying with Jani. Hours pass. An eighty year old man entertains Jani by singing Vaudeville songs while his wife undergoes an X-ray. The ER doctor tells me she is concerned about diabetes insipidus. What is that? Apparently, it can be caused by lithium. The kidneys stop processing glucose out of the body, turning urine into pretty much just water. The only treatment is reduction of the lithium or reduction of fluids, which seems counterintuitive but that is what they do (so the glucose can build up in the urine).
The ER doc calls Jani’s psychiatrist. She comes back telling me Jani’s psychiatrist doesn’t want to reduce the lithium. I don’t like this. The only thing that she really needs is the thorazine. That is what works the best against her psychosis. But without the lithium and the clozaril, she would need a higher dose of thorazine which can cause extreme photosensitivity and even toxicity in its own right.
Anybody who thinks I like giving Jani these drugs has never been in this position. Without them, Jani tries to bite her own hand and runs under cars. With them, her organs are at risk.
What would you do?
We wait for what is called a specific gravity test on Jani’s urine. It comes back low, but not dangerously so. Jani will be released but we must follow up with her doctor the next day.
The next day her specific gravity is normal.
I try to go to work again. Again Jani gets diarrhea.
And finally I get it. She only gets it when I am gone. Even though I am only gone teaching nine hours a week. She needs me.
I still have four weeks to go. Every day I work now, I am afraid to go, afraid to leave her behind.
I thought we were getting better. I thought I might be able to work more. Now I am praying I can get through the last few weeks. We have returned to her needing me all the time. I can’t function again because I must be with her all the time.
This week there is no school tomorrow (Veteran’s Day) and a furlough day on Friday. Then Thanksgiving. Then the Christmas Break. The depths of winter.
My cell phone rings all the time. Creditors, mostly the holders of my student loans. I am sure I am in default by now. I can’t answer their calls. I can’t have a conversation because I am with Jani.
I go to two ranches and shovel manure, trading my labor for her horse therapy (because I can’t pay). I don’t mind this. I find it peaceful. I don’t have to think and I know Jani is okay without me for awhile.
I expect my student evaluations this semester to be terrible.
I will miss the deadline for my book. I have no time to write the damn thing.
We are late again on the rent. Usually the manager waits until the middle of the month before sending us to “legal,” but they did early this time. Right now they are having the parking lot of the apartment complex resealed, meaning that cars must be off the areas that were done until 6pm. Tonight, after picking up Jani from school, where all she could say when I kept asking what science experiment she had done was “I missed you.” We arrived home at 5:30. The parking lot was still blocked off, but I figured it was no big deal with only a half hour left. So I lifted the cordon and drove in.
Ten minutes later, I get a call from the irate manager, asking me why I think the rules don’t apply to me.
My first response was what was the big deal. It was almost six anyway. She tells me I could have damaged the parking lot if it hadn’t cured yet and if they have to do it again… I think she was about to threaten me with having to pay for the resealing until she remembered I haven’t paid rent on the one of the apartments yet. She went on to say, “You did it because you didn’t want to be inconvenienced!” like she was my mother reprimanding me. I felt myself starting to go. I felt the wave breaking over me. Yes, my life is all about convenience. I snapped and told her I have a schizophrenic child who needed her dinner and needed her meds and needed to go to bed and I couldn’t wait for her stupid parking lot.” “I get that,” she replied in her condescending “you owe us money, you loser” voice, but I cut her off. “No, you don’t get it! Nobody gets it!”
She threatened me again not to park tomorrow on the section being resealed. I said nothing. I hated her. I hated the power she had over us. Sometimes I get messages from well meaning people asking me why we don’t move, since paying for two apartments is so difficult.
If Jani gets diarrhea from the stress of me going to work for 9 HOURS A WEEK, how is she going to deal with the stress of moving? She is hanging on, fighting her psychosis as hard as she can, only because we work so hard to keep her life stable even though the rest of the world keeps trying to fuck with it.
After a long moment of me not responding, she coldly wished me goodnight and hung up.
I am being petty, I know. But with everything I have to deal with, to get on my case about driving on the parking lot thirty minutes before it was due to open anyway seems pretty damn petty too. I shouldn’t even be talking about this. It is nothing. Everyday I get emails or Facebook messages from other parents with mentally ill kids, looking for my help. And I do my best, while still struggling to keep Jani going. And they are always the same needs. They don’t need help with meds or understanding psychosis. They already know. What they need help with is dealing with “the system” that would rather send our children to residential that actually help them stay with their families.
I wouldn’t be surprised if an eviction notice shows up on Jani’;s apartment door tomorrow. We haven’t paid the rent. We can’t pay the rent. There is nothing left in the barrel to scrape. It is empty. They can throw us out. I could take them to court, I suppose, but what would I say to the judge: “I need two apartments to keep my son safe from my schizophrenic daughter and to keep her stable.”
Then why don’t you send her to residential? Maybe it will be a court order. I can’t possibly expect Riverstone Management to give us free or discounted rent on one apartment just because my daughter is sick, can I? I am not entitled to special treatment.
I don’t need it. She does.
But we are cutting that every where, aren’t we?
I want to scream in frustration. I am sick of the world. How can I help other families with mentally ill children when I can’t even help my own.
I feel like the wave is about to crash over my head and I am too damn tired to fight it anymore.
So what did happen that day?
The wave hit me. I remember swallowing water. I felt myself turning upside down. My head and back slammed into the sand. I struggled to get back to surface but found I couldn’t. At first I panicked, desperate to breathe. But then another moment of clarity came over me.
If this is it, so be it.
The wave’s undertow dragged me along the coral. I felt sharp stings as coral and sea urchins punctured me.
I let go. I let it all go.
Then I felt it release me and I floated gently to the surface, bloodied and gashed but alive.
I feel depressed tonight. I feel afraid for the future. The wave is crashing over me and pushing me down and I cannot fight it. But I am not going to die. I may be battered and bloody, but I know it will let me go. It is the law of the wave. It must go out again, as surely as it came in.
If tonight you are out there, like me, with the wave pushing you down, just let go. Let it drag you along the bottom. It will hurt, but one day, I promise you it will let you go, because it has to. One day, you, me, we all will break the surface again and feel the sun on our faces.