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Come On, Thunder (Look, I gotta go. I'm running out of change)

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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

 

Oh shit.

 

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.

 

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16 comments on “Come On, Thunder (Look, I gotta go. I'm running out of change)

  1. Michael, I don’t have any wise words or any way to help you. I am thinking of your family and hoping things will be O.K. I work as a teacher’s aid with a boy who has along list of diagnoses,FAS, ASD, ODD ADD. I am worn out by the end of a six hour day, so I cannot fathom how you do it. I know why you do it, of course and hats off to you. You are a good parent, your children come first and I’ve got to believe that will somehow “pay off” some day. I don’t know if pay off are the right words, I can’t get a handle on how to say it exactly, but keep on fighting.:)

  2. Wow
    That lady called you a loser? Wow… She’s the one who has problems! I hope that something turns well for you guys. I’m not the Ultra-religious type, but I’ll ask everyone I know to pray for you guys, sincerely. I pray that our prayers will be answered for your sake.

    Everything will turn out for the best.

    Note from Michael: Actually no, she did not call me a loser. That was me interpreting the tone of her voice.

  3. Wow,Michael,wow. I can’t imagine what your going through and i’ll be honest, i don’t get it. I’m not a parent,so i don’t know what it’s like to have a child, albeit one who is suffering from mental illness.But even though i can’t understand the love that a parent has for their child that they would go through all this, i can deffinitely say that your bravery and determination with jani is just amazing.so,kudos to you and susan. And wow.

  4. Hi Michael
    Hi Michael,

    I can really feel your pain and your desperation at this moment I am so sorry for you. Your story is so sad at the moment that it struck me. People are so insensitive to your situation. There should be alot more resources to parents with children that have real heavy mental ilnesses. What can one do best in times of despare is what I caught myself thinking while reading your blog. I have my problems too due to mental difficulties I was not able to study for years and it put me in a terrible position. Both financial and social. So I am a bit desperate myself too and that’s why I can relate to that feeling. I also wonder if I’m still able to make it or be able to pay for things and have a huge fear of the future. Sometimes I feel I don’t want to be on this planet because it’s build for peope without mental problems. And if you have them or your child has them you are on your own because the majority of healthy people wil not understand you at all.

    It seems like small motivational talk doesn’t really help. What else can we do. I do not have the awsner yet. What is the best way to battle fear? They say the only thing that can cure your fears is facing them. But it’s very hard to face the future because you cannot face it right now. You can only wait for it. So it’s a very cruel fear because it’s almost impossible to cure. Fear of the future can perhaps only be cured by concentrating on the day itself. That’s what I am trying and it works better for me. But i do not have the responsibility for a child like you do let alone a child with severe mental problems.

    I can only advice you to stay calm and perhaps try to ease your spirit with practicing meditation or try relaxation techniques. It’s all about fighting the fear now and replacing fear with trust. You cannot trust schizophrenia nor psychosis. They do as they please. But you can trust yourself. Trust your ability to avoid or deal with the waves when they are coming. Calm your mind as much as you can because you have a crazy amount of stress in your life. Try to let go of the fear of the future as much as you can. Focus on the day , focus on easing your mind and when confronted with another wave keep your mind as eased as possible. You’ve been there before you have fought off the waves you can do it again. Little moments in your day like 5 minutes or so try to meditate or close yourself off and calm your mind as much as you can. It’s the ony way to fight this terrible fear of the future.

    I wish you all the best and alot of trust in yourself. I hope you can calm yourself and conquer your fear. Stay as calm as possible and you will get a feeling of control over you situation. I’m sure you will make it in the end you have come so far battling this you are a brave fighter.

    Regards,
    Tom

    Note from Michael: Hang on, Tom. You are right that this planet isn’t built for those with mental illnesses but I swear I will change that by the time I die. We will remake this world, you and me and everybody else who gets it.

  5. *HUG* I know a hug will not fix anything but words aren’t enough to describe what I wished I could do for you and your family. After suffering for 6 years with major depression so bad so that at times I couldn’t move and being laughed at and mocked by people that were supposed to help me I only know the tiniest fragment of the difficulties that you go through with the system and in life. Yet your words are written with such sincerity although the situation is a sad one your words have rendered me speechless I hope that someday you do get to finish your book because even just through your blogs your words are loud and they are clear and they reach inside to places long forgotten. You have a gift you truly do… well wishes to you and your family

    Note from Michael: Thanks, Anita. I needed that hug. Even just the thought helps me to get through the day.

  6. Michael & Susan,
    I’ve been a silent follower of your blog for some time now. I can empathize (albeit slightly compared to your tribulations) when my husband was medically ill and needed to be hospitalized or seen by a doctors weekly or more. He’s had 2 organ transplants, lost the vision in one eye, impaired in the other, lost his teeth – all complications from diabetes. He’s now in good health. No one can be a better advocate for your loved one than yourself. I don’t have much but would like to donate. I see you use PayPal. If using PayPal costs you a percentage, please send me your address and I will send a check directly since you literally need every penny. I wish you and your family well. My mother’s favorite saying was “It’s always darkest before the dawn.”

    Note from Michael: I don’t think your experiences are slight compared to my tribulations at all. Two organ transplants, lost an eye, lost teeth, from diabetes which like schizophrenic is a chronic disease that must be managed forever. I think you know exactly what it is like. Please don’t be so dismissive of your own struggles. We all suffer. We all feel pain. That is what bonds us together as humans.

  7. You are heard.
    I know you feel scared and out of options. As an adult struggling with mental illness my parents failed to properly address, I feel strongly that Jani (and hopefully Bodhi as well) are going to remember that their parents never gave up on them and were willing to go down to the darkest depths for them. We were so poor when I was growing up, but that’s not when I think about when I look forlornly back at my youth. I think about how much I wish my mom and dad would have been there to emotionally support me as I fell to pieces in a cruel world not designed for those anything less than rational, logical, and emotionally controlled. I don’t think I will ever feel completely whole, because no matter what good happens to me, I wonder how good I could really be if I wasn’t enough for my parents to love. Your kids will never have to wonder that even if you end up living in two cardboard boxes on the street corner. Not that I want that for your family, but just don’t forget that you’re already successfully doing the most important thing you can do for your children and all that’s left is to go with the flow and hope you’ll have some good luck soon.

    Note from Michael: Thank you, Zell. You reminded me that paying the bills isn’t as important as being the best father I can be to Jani and Bodhi. I am grateful for that.

  8. Thank you, Michael, for the kind words. I was fortunate to have people who came through for me during our roughest time and I just want to “pay it forward.” Donation has been made thru PayPal.

    Note from Michael: And we are fortunate to have people like you and all the others who have come through for us, helping us to keep going, despite their own difficulties.

  9. I know personally Winter is by FAR the hardest time for people with mental illness. Every year, like you do for Jani, I pray for something different. Wouldn’t it be nice if it were Spring all year round? Poor Jani sounds like shes suffering from separation anxiety-as if she doesn’t have enough to deal with already!. I suffered from that when I was around her age too (not as severely as Jani, however). Is there something you can give to her to remind her of you when you’re not around? For example, I remember my mom giving me a picture of her when I would go to school or a stuffed toy she gave me and that would help some. It annoys me to no end that regular physicians and even people working in hospitals do not know about psychiatric medications. HELLO PEOPLE!! How are you going to help the patients that DO come in that are on these medications? I’m glad to see you have a PayPal button up. I am going to donate as soon as I get money coming it.

    Note from Michael: Kate you have already done so much for us and I appreciate it. I like your idea about leaving Jani with some reminder of me when I go to work. That is a great idea. I will do that.

  10. Michael
    “You have to write from the deepest part of your heart or your writing will be empty.” That’s is what my first creative writing teacher told me. All of us out here have seen into the deepest part of your heart, and it’s a treasure to share. I wish so much that your book could finally be published.
    Jani belongs with her parents. Every time I come on this site, I worry that your new post will tell me the wave didn’t let you back up, that Jani is gone from her family. Could this world be that cruel? We all believe in you and your ability to keep Jani safe and the family together. Is there a way to help with Jani’s therapy? Can we help pay for her stays at the horse farm? When the Foundation changed it’s name to “An eight year old… ” it was such a joy to see. She would not be eight without her parents. You have worked some might fine miracles.
    Hoping to send in a little funds.
    Joe

  11. Jani
    I know it’s ruff, Michael, but you have a lot of admirers and supporters and we will all, I think, come forward with all the spiritual and material support we can muster.

    We won’t give up on you and I know you’ll never cease caring for Jani. For my part, as long as I draw breath, I’m going to do whatever I can to help you folks out.

    Personally, if I had the bucks, I’d give Jani a castle in Spain, if it would make her happy and well.

    I think Kate’s picture idea is a good one–give Jani something she can hold onto while you’re away at work.

  12. It Came For Me, Too
    Micheal;

    The wave came for me too, once.

    It was on a vacation to see my friend, in the depths of California’s (Mountain View) volatile waves. We, us two non-biological sisters in our own right, were wave surfing. The water rushed away from our feet at the beach, and we knew a giant was coming. Without uttering another word, she swam with speed to catch and meet it – to ride it with her mere body. Less experienced, but not wanting to be left alone with the sea, I stumbled after her.

    It was then that I truly saw It. While not of Tsunami strength, the wave was pushing towards us with a force of its own. I looked back to the shore: I was too far out to make it in time. With chilling certainly certainly, I realized that the Beast was also just out of reach for safe surfing. The water was going to crash upon my head, and there was nothing I could do to save myself. In one surreal moment, I knew I was at the mercy of Nature, of Fate.

    It felt as if hours had snaked past before It hit. In reality, it had only been mere seconds. Watching in slow motion as it crashed upon me, I only had time to suck in my breath, shut my lips, guard my vision, and brace myself. The World spun around me, and I remember the brute force and the pain it caused as the Wave crashed upon my head. In a single moment, it dragged me Under its grasp.

    The next few movements of the clock are both vivid and blurred; close, yet distant images. Nature’s force spun and threw me around underneath its wave, dragging me against its floor and jerking fragile muscles in ways previously unknown to them. My eyes flicked open, and I felt as the salt burned them. In one moment that I can still feel the clearest, I reached up my hand to where I was sure was Up. No matter how high I reached or kicked, my flesh never broke the surface. There was just more water, an ocean that seemed to last forever. Had my eyes not already been seared with pain, I knew tears would have formed. I thought I had reached The End; that I was going to be dragged out to sea, found wrinkled and lifeless miles from where I was. It took everything in me to contain my panic and grief, to keep my mouth from opening into an endless scream. A movement that, surely, would have ended my life.

    And just like that, it was over.

    The wave thrust me against the burning sand, and my head broke into the air. In a final moment of energy, I thrust my body clumsily forward to free myself from the grip of the water. I Won. It did not pull me backwards against. Though my bare skin was scraped, irritated, and bloody, I was alive. I cared about nothing else. Even the fact the wave had stolen my glasses did not catch my attention. When it did, I mustered a smiled and joked that now the fish would have good eyesight.

    (continued next..)

  13. Psychosis As A Wave; Don’t Leave Me Alone
    (continued….)

    It was the wave that temporarily blinded me and physically injured me; but it is not the only wave that I have been gripped by, as you know well. Psychosis, and the other mental illnesses I bear on my discharge papers, despite being of a different nature is quite similar to that wave I faced on a California beach. Just like that powerful force of aquatic nature, it takes away (in)sight, tears at my flesh, pushes me towards Death, and instigates a panic so profound that the only thing to do is scream. It makes me fear I will never be with those I love again, and inserts a yearning to be with so strong that my body often reacts with illness and pain. No matter the situation, I want to be with them, to follow them; because, with them is the only place I feel safe. Away from them, internal security is lost.

    When the wave surrounds me, being alone – or, rather, feeling alone – is mental torture. Without someone I trust by my side, I am left to fend for myself in this world, this system, my world. In that state, I might as well be visiting a foreign country for the first time. Without guidance. Without a hand. Alone.

    To help put it in perspective:

    Imagine you are that young boy again, and you are suddenly placed in a world where people/other things are constantly hurting you and having you hurt others. You are harassed. Constantly. Everybody around you is out to hurt you, to get you. There is no escape

    Now, imagine that nobody in that world is somebody you feel you can trust deeply. Nobody you can talk to. Cry to. Hug. Hold on to. Nothing. There is nobody. You are alone. Utterly alone, with many to hear you scream; but nobody to understand them. Not truly.

    This may be how Jani feels when you are away.

    I support the idea of giving Jani something to remember you by when you are away. My Mother would leave notes in my lunch, and I would keep those with me, gripping them until they crumpled. Those simple pieces of paper became my lifeline. I would hug them; kiss them; smell them. Anything to feel closer to my mom.

    An idea you might want to look into is stuffed animals that have the ability to record messages (a Google search of |record a message stuffed animals| brings results), as that way she can hear your voice, that you love her, that you WILL see her soon, anytime she needs it.

    We’re All Still Here As Winter Consumes, Drowning Right Here With You.

    With Love;
    Eri/Erika

  14. You are still my hero
    Note from Michael: Hang on, Tom. You are right that this planet isn’t built for those with mental illnesses but I swear I will change that by the time I die. We will remake this world, you and me and everybody else who gets it. >>>>>>>>>>>
    I wish every second of every day that there was someting that I could do to change society’s perception on mental illness in children. There is no excuse that a child should receive the proper treatment for their illness. I hate it – I hate everything about it and burns my ass that we all have to fight so hard and fail so many times. I also swear that I will do something to bring to light the trials and tribulations us parents face.

    Note from Michael: Just keep talking, Heather. Keep sharing. Keep fighting. We aren’t failing. We are getting somewhere. We are making them take notice.

  15. Tsunami
    Your discussion about Tsunamis is a bit eerie as I’ve had dreams about Tsunamis for the past several years now. I don’t know why I dream them but in my dreams I usually escape them. Sometimes in my dreams I’ve been fascinated by them and other times I’ve learned to fear them. I read somewhere that dreaming about Tsunamis means you’re overwhelmed with something in your life or that you’re experiencing emotional instability. I don’t know if that’s true but it would make sense for me.

    This past week was very trying for me emotionally- I just lost it. I cried for several days on & off and I was desperate. As I lay in bed crying silently, I could hear the calming voice of my nextdoor neighbor’s cat. The cat doesn’t usually come on the balcony but he comes out sometimes to meow in my direction because we can see each other through my bedroom window. I guess he wants to hear some comforting words when he meows constantly. I sometimes comfort the kitty by saying things like, “it’s okay kitty.” So on my worst evening, the cat meows constantly in my direction and as usual when I hear the cat’s meows, I feel comfort & I’ll let him/her see me & I’ll tell him it’s okay. But today I just couldn’t, although her meowing was somewhat comforting. I couldn’t really get up to comfort her.

    The next morning I’m still having a hard time and I called my loved one who has ‘psychosis?’ and I bawled, telling her how much I miss her & asking her why she doesn’t come over any more, hopsing for a comforting response (This is only the second time I’ve done this). And she said when her job is finished, ‘her spiritual job,’ she will be able to come over & things will be better. She asked me to come over, which I usually do but i’ve been feeling both physically and emotionally ill. And this has been happening more often to me. Despite her constant ‘delusional?’ state, I feel comforted when I talk to her because she’s the only family I’m close to.

    Also when my loved one gets ‘physically ill’ her psychosis tells her it will cure her & she refuses to go to a doctor. She says that spirits are making her sick right now but it’s necessary & they will later cure her. One day she was sick, vomiting here & there & refused to go to the hospital
    and when I was pressuring her (I would of course, drive her there or if she wanted an ambulance called, I would call it) & she got mad & yelled, “No! I’m not going to the hospital.” So I made her some soup & gave her OTC meds, cleaned up her place & left, feeling hopeless & helpless, that if it was something serious, I couldn’t do anything else. She’s an adult & I couldn’t just make her go. There have been other times like this. By the way, I think she has depression with psychotic features. She was briefly seen by a psych upon being discharged from the hospital several times but refused to continue treatment & when I asked her psych what her diagnosis was, she simply said, “psychosis,” this was years ago that she was ‘diagnosed.’

    My lawyer has helped me apply for disability and I was denied 2 weeks ago, & now we’re going to appeal their decision. I provided EVERYTHING they asked for & gave them evidence that I’m suffering constant episodes of Major Depression but I am disheartened because even my Psychiatrist (he Rxs my meds) has told me I should try going back to work- Is he deaf about what I’ve talked to him about, what I go through almost every day with this illness? What is this world coming to:(

    This past week I was terrified for my loved one’s & my future & feel that once she’s gone, I want to be gone too. I feel like now I also don’t fit into this world- and you know what? I don’t want to fit in it anymore. I want (& KNOW) we will be in a better place someday.

  16. Inspiration
    Suffering from depression myself, I found the last two paragraphs really moving. So I decided to make a picture with them. [url]http://dl.dropbox.com/u/2689764/Waves.jpg[/url]

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