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Ready for the Floor (Take this Dance)

I knew this would come eventually. Frankly, I am amazed how long we have been able to delay it.

 

In April of 2009, Jani was at UCLA. She had been there three months already, a lifetime in modern American inpatient psychiatric care because of insurance companies always pushing for release. The standard initial authorization for acute inpatient care for psychiatric illness is three days. Every day after that new authorization must be sought. It is such a fight for hospitals that they often release patients and tell them to come back again through the ER, because doing so constitutes a new stay and the three day clock created by the insurance resets.

 

Where did this three day rule come from? If a patient is diagnosed with cancer, they are not given three days to battle it, to keep it from spreading through the body. They are given as many rounds of chemo and radiation as is needed. It is like coming in with breast cancer and being told that you will receive three days of chemo and that is it. That would never happen.

 

Yet it happens to psychiatric patients all the time. Why? Because as a society we still treat mental illness like “it is all in your head.” You just need to “snap out of it.”

 

Rapid response to medications is rare and almost certainly will not occur within three days. You also have to monitor carefully for side-effects.

 

It has gotten to the point in America where doctors really can’t treat patients anymore. They minimize treatment to insure they get paid by the insurance carrier, who rewards them for utilizing the cheapest care possible. Inpatient psychiatrists spend a sizable chunk of their days on the phone to insurance carriers, arguing with the “doctors” who work for the insurance carrier, whose sole job it is to argue that tests, treatments, inpatient stays, etc, are “medically unnecessary.” On the other side, they have the hospital administrators pushing them to release patients for fear that the insurance carrier will deny payment and they will be left holding the bill.

 

So hospital doctors are caught between the insurers and the administrators, neither of whom have the patients’ best interests at heart. Occasionally, rarely, doctors will stand up and hold their ground, insisting that a patient must remain inpatient. Sometimes they forfeit their payment and the payment to the hospital. UCLA ate several weeks of care for Jani after Blue Shield denied authorization for further care before I appealed to the State Department of Managed Care (California has the best consumer protections against insurance companies in the country) and they overturned Blue Shield’s denial and forced them to pay.

 

I wish that doctors and parents wouldn’t fight. I wish they all realized that they are the defenders their mentally ill children have.

 

But I digress. Maybe because I am tired of fighting.

 

In April of 2009, Jani was at UCLA. Despite all attempts to check its progress through various medications, Jani’s schizophrenia was winning. There was the violence, but that wasn’t the worst part. The worst part came a night I came to visit her.

 

I have blogged about this before but it bears repeating.

 

She was asleep when I got there for visiting hours. I woke her up. I had food for her, but that wasn’t why I woke her up. I needed to see her. I needed to know that there was still a little bit of Jani there. In those months in the Spring of 2009, that was all I had to hang on to, those little moments that let me know that there was still some of my daughter left inside, still some of my little girl.

 

I call to her, “Jani, it’s Daddy.”

 

She opens her eyes and sits up in her bed. She looks at me, but then scans the room. She didn’t appear to be looking for anything. It was like she was rechecking her surroundings, trying to get her bearings.

 

Finally, she turns back to me. “Who are you?”

 

At first I thought she was joking. Jani and I say silly things to each other all the time. It has always been our bond and my way into her world. I kept waiting for a smile to break out on her face.

 

But it never came. She just kept staring at me.

 

At that was when I realized she truly didn’t know who I was.

 

“I’m….I’m your daddy.” I choked out the words. I am the man who has raised you since you were an infant. I was the man who tried to show you the world, who tried to delay what I knew was coming, even if I didn’t have a name for it then.

 

“Oh.” Her voice is flat. She is taking my word for it. “Did you bring me any food?”

 

I lay on the bed next to her while she ate. She let me hold her, but I could tell she took no comfort from it. It meant nothing to her, one way or another. I meant nothing.

 

She was almost entirely gone.

 

I drove home that night, convinced we were nearing the end. I was afraid Jani was slipping into catatonic schizophrenia, that her world would soon completely eclipse our own.

 

One day, I thought, very soon, she will go to sleep and never wake up. Her body will go on but her mind will be gone.

 

I could not stop it. UCLA had tried to stop it but to that point had failed. And I wasn’t going to let her slip away in a hospital. If she was going to go, I would be with her when she left, even if she had no idea I was there.

 

I called Susan. “I think this is the end,” I told her, relating what had happened.

 

Susan was crying.

 

“I want to bring her home, and just let whatever is going to happen, happen. But I can’t bring her home with Bodhi there. You need to take Bodhi and go to your parents.”

 

“But I want to be with my daughter!” she cried.

 

“I don’t want him to see this.” I don’t want him to watch his sister slip away into a place she would never come back from.  I also knew from listening to others in the support group we attended at the time that at some point Jani might receive a command to kill me, that it might be my voice in her head. I have heard it happen to other parents. In truth, I wanted this. If Jani was going to die, I wanted to die as well.

 

This is what I didn’t want Bodhi to see.

 

Susan was distraught.

 

“I need my daughter! I want to be with her! She needs me! And Bodhi needs his father!”

 

There was no other way. I hung up and stared into the night, mentally trying to prepare myself for the end. No matter how much it hurt me, I would be there until the end.

 

And when she was gone, I would take something, lie down next to her, and slip away, too, hoping we would meet again in the next world.

 

Bodhi would be okay, I told myself. Bodhi needed his mother more than he needed me. I had to go with Jani. I had brought her into this world. My genes had cursed her to this fate. I had to go down with her ship. I owed it to her. It was the only way I could say I was sorry.

 

My cell phone rings on the passenger seat beside me. It is Susan. I pick it up.

 

“I have an idea,” she says. “It just popped into my head. It must be from God.”

 

I was pretty short on faith right then. I wasn’t angry at God for any of this. I didn’t blame God. It was just the hand that fate had dealt us. But I certainly wasn’t expecting God to save Jani. Or us.

 

“What if we trade in our two bedroom apartment on two one bedroom apartments?”

 

It took me a minute to comprehend what she was saying.

 

“One for Bodhi and one for Jani,” she went on. “That way you and I could trade off and each child would still have both parents.”

 

I have come to believe God really does speak to Susan. Not in the “Hello, Susan, this is God,” way, but I do believe her inspiration is divine. It has to be. It was a brilliant idea.

 

The next day I checked with the leasing office. Two one bedrooms were coming available. We could roll over our lease into the two new apartments.

 

We moved in May of 2009. The collective rent for both was 2500, five hundred more than what I was paying for the two bedroom.

 

This is what allowed us to stay together as a family. This was the only option other than sending Jani to an out of state residential, the only thing the Department of Mental Health could offer, because the only local facilities that took a girl Jani’s age had rejected her as being “too staff-intensive,” code for too psychotic. Because these in state facilities are really orphanages for DCFS kids removed from their parents’ care, not residential treatment facilities. The care is geared to dealing with trauma from abuse, not internal thought disorders and psychosis.

 

Jani’s apartment was her refuge, her place to go where she didn’t have to worry about hurting Bodhi. And Bodhi had his place so he would not grow up in fear of his sister. We wanted him to love her, to understand her, so he would care for her when we were gone, not fear her and hate her because of her sudden and unpredictable violence toward him.

 

I said at the time, and continued to say for many months after, even as I started admitting to financial struggles in this blog, that originally I had been able to afford both apartments. That was a lie. It was always a lie. I knew I couldn’t afford it. Even with a full load of classes, which I could no longer do due to Jani’s constant needs, the rent on both apartments ate up everything I made. I knew that eventually the day would come when I couldn’t do it anymore.

 

Susan’s unemployment delayed it for awhile. The first part of my book advance delayed it for awhile. Cashing out my retirement account delayed it for awhile.

 

But mostly, it was these people:

 

Elizabeth Hawksworth

Wendy K Warbasse            

Erin Whittaker            

emily martz

Jim Kelley

My H Doan Katherine Welch            

Rhea Cicale            

Catherine Flood            

Alecia Kyler

Charles Olbert

Michelle Wilson

Jennifer Keane

Carl Goss

Michele Walker

Nabhan Khondker

Ainara Del Valle Perez-Solero

Joseph Coti

Jennifer Boyd

Erika Christensen

Alynna Manriquez            

Tom Kegerreis            

Alexandra Drown            

Amelia Davis

Lynn Frake            

Will Landa            

Ariel Braverman

Margo Martin            

Synthia Jahns            

Katherine Walters

Tony Herman

Christine Lang

Victoria Gronek

Julie Nagy

Laurie Zuckerman

Andrea Nostramo

Shelley Marshall

Erich Burg

Tara Berchielli

william hasemann

 Angie Geisler            

Sarah Hodge

Donna Segel

Antona Software

Cristin McCloud

Joanna Sidlinger

 

These are just some of the people who have helped us out financially.  I wish I could list everybody. This list of names goes back to August 2010, which was as far as I could get before the Paypal transaction record crapped out on me and wouldn’t show me any more.

 

 

All but one of the people above I have never met. They only know me through here. As I said, this is only the list going back through August, and many of the names on here gave more than once. All together, probably five hundred people have donated to us since the Paypal first opened here in September of 2009. Some have donated four figures. Some have donated one. Whatever the amount, these are the people who have kept my family together. These people have allowed me to keep paying for the two apartments. They have done so through my denials to myself. I would make references to not having enough money in many of my blogs but could never bring myself to ask outright. I was kidding myself, pretending that by not asking outright I wasn’t begging, that I was simply accepting the graciousness of these people who have never met me or my family.

 

For a year and a half, I have depended on the charity of others to keep the two apartments and to keep my family together, but I always knew that it was only a matter of time. Even with all the giving, we are a black hole, paying out in rent and life expenses twice what I make as a lecturer. It was only a matter of time.

 

Time is up.

 

Tonight, as I brought Jani back to her apartment after dinner, I found a sheaf of paper stuck in the door. It was a legal summons. Our apartment complex is suing Susan and I for unlawful detainer as we have, once again, been late with the rent. Every month has become a decision. Which apartment do I pay? Jani’s or Bodhi’s. I can only pay one. And then I wait, pray, write another blog where I make references to not having enough money, praying that we will get donations so I can keep this up another month.

 

This month I paid Bodhi’s apartment but could not pay Jani’s. In previous months, the managers have waited. This time she sent us to legal.

 

I have five days to respond to this legal request for eviction. I have already talked a lawyer friend. I have no recourse. This is a well-managed apartment complex. They fix things quickly. There is nothing I can counter-sue for. I have no justification for not paying the rent. The fact that I need two apartments because my daughter is schizophrenic and this is the only way to keep her out of residential and ensure a healthy relationship with her brother entitles me to nothing.  Nor does any of the media appearances we have made. They don’t care.  I need to come up with $1250 plus their legal fees by this Wednesday the 17th. If I can’t, I have to hope I can get a stay. I have tried to negotiate a lower rent but to no avail. I am not special. Jani is not special. They acknowledge her illness but that doesn’t excuse me from paying the same rent everybody else does.

 

And, sadly, they are right. I have desperately tried to remake the world to fit Jani, but I have run out of time. In the end, I, she, we, are no more special than anyone else. The only difference between you and me is we’ve been on Oprah.

 

I cannot move Jani. She has been out of the hospital for five months now, her longest stretch since January 2009. But as I mentioned in my last blog, this is the hardest time of the year. She does not deal well with even minor changes. I am terrified that changing her environment would send her over the edge.

 

Even if we could all fit into Bodhi’s apartment, the lease stipulates only three people can live there.

 

I will not send Jani to residential, just to save money. I will nakedly beg all of you for money, over and over again to prevent that from happening. I don’t care what anybody thinks of me or says about me. A year and a half ago I thought my daughter was going to slip away forever. I will never let that happen. Whereever she goes, I go with her.

 

So here I am. I have no pretense anymore. I am begging you. Tell your friends and coworkers about us. I am begging them, too.

 

I wish I could say I only have to do this once, but that would be a lie. I will be back to beg you again in December. I will have to keep begging you until the book is published (in 2012, assuming I can finish it on time). So many of the people above, and the ones I couldn’t get onto the list, most of them couldn’t afford it. That pains me. It makes me wonder where the rich foundations are, the ones who have money? Or is keeping a family together not worthy of their investment?

 

The only way I can stop begging is if there someone out there with enough money to donate to keep us going for six months or so. That would mean many thousands of dollars. I hope, but I don’t expect that. In truth, I know it is going to be all of you who can’t afford it but will give anyway.

 

I thank you from the bottom of my heart. All of you. You have allowed us to do what most other families couldn’t do. You have kept our family together, kept our daughter with us, allowed our daughter and son to develop a relationship, kept our daughter’s life as stable as possible. I owe all of you in ways I can never repay. All I can say is that if we survive this attempt at eviction, and the one after that, and the one after that, I will spend the rest of my life making sure no other family with a mentally ill/autistic child has to beg to stay together, beg for help. And I already am.

 

I am ready for whatever happens.

 

I love and thank you all.

 

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32 comments on “Ready for the Floor (Take this Dance)

  1. Although I only have $100 to get me through the next 2 weeks, I gladly donated $60. Your family needs it more than I do. I will continue to donate whenever I am able to. I’m sorry it couldn’t be more. You and Susan are inspirational people. Good luck.
    Katie

    Note from Michael: My deepest thanks, Katie, but I am going to send it back. I do not want others to suffer for us. Don’t feel bad. Our facebook friends have been very generous. As soon as it clears the bank I will refund it back.

  2. I wish I could have sent more. I will try to help again around the holidays, which I am sure are particularly hard in many ways. Best wishes, and thanks for letting us into your world. You are an inspiration to many of us in similar situations.

  3. Michael,

    I’ve followed you and Jani since Bridget, mother of Maddox, and a close friend of mine, pointed me to your blog. I feel like I know you through these posts (though I don’t, I know – I still feel like I do), and I wanted to help. I know Bridget has pointed you to the Livejournal link I posted; please let me know if there’s anything else I can do. I will try to donate more when I can (I get paid on Monday).

    Please know that there are people who care – I am sending thoughts and prayers to you, Susan, Bodhi and Jani. Thank you for doing everything you can to help children and adults with mental illness. I don’t think you realize how your fight is affecting them. You deserve so much more than you’re getting right now. I wish I could do more.

    Thanks again,

    Elizabeth (Liz)

    Note from Michael: Thanks, Liz, but they are the ones who deserve so much more than they are getting. That is why we fight for them.

  4. “I have blogged about this before but it bears repeating.

    She was asleep when I got there for visiting hours. I woke her up. I had food for her, but that wasn’t why I woke her up. I needed to see her. I needed to know that there was still a little bit of Jani there. In those months in the Spring of 2009, that was all I had to hang on to, those little moments that let me know that there was still some of my daughter left inside, still some of my little girl.”

    You left out the bit about your sadistic monologue concerning SHARKS and how they kill & dismember & eat their prey. You delivered that horrible speech to your tiny daughter while she was waking up, groggy and bloodied.

    Why did you decide to leave it out this time?

    It’s obvious why.

    (Being the brave and honest person you are, you will of course delete this comment. But remember, Mr. Schofield: Your entire old blog is on record elsewhere and fully backed up. Not everyone is a fawning fan of yours. And you cannot rewrite history with impunity; not forever.)

    Note from Michael: No, I won’t delete it. That blog entry can be still be accessed under “Michael’s Old Blog” so it’s hardly hidden. I know you love your conspiracy theories. Anyway, nobody else ever read that sequence the way you did. I was trying to engage her and she enjoyed learning about animals. You make it sound like I described in graphic detail how a shark kills its pray. To spare you the trouble of finding it and posting it, I told her about how sharks attempt to break the spine of their prey to immobilize them so they don’t risk getting hurt by their prey. Jani loves learning and Discovery’s Shark Week just happened to be on. I was desperate to engage her anyway I could. There was no “dismembering.” But sharks do kill and eat fish. That is a fact of life. By the way, I love how you call yourself Laing, as in RD, a nut who gave his patients LSD and took them out into the forest. He was an embarrassment to psychiatry.

    I encourage you to get your own book deal.

  5. I’m keeping you all in my thoughts… my donation isn’t much, but if everyone who reads your blog just sends a few dollars, perhaps it’ll be enough.

  6. Idea how you guys could get more money. A reality tv show about childeren with mental illness that shows people what it is truly like to be schizophernic and what the daily challanges are.

  7. Michael, I have tears in my eyes. For you but also for myself, remembering when my husband (my Michael) was in dialysis, before social security benefits kicked in, when I was working 3 jobs to make ends meet. I had 2 children in middle & high school, had to drive him to dialysis 3 times a week plus to the doctor when the illness got to be too much… I was sitting in the dialysis waiting room when a social worker came over to me and asked how I was doing financially. Way to proud to admit, I insisted we were fine. It’s just how I was brought up, don’t rely on anyone for anything. To her credit she didn’t believe me and wrote out a check right there for $150. I thanked her but inwardly I was beyond grateful. Michael’s visiting nurse unbeknownst to me gave our name to the local Elks Lodge. I got a phone call that I had a Thanksgiving basket coming to me. I didn’t find out for several years it was her doing. What I’m trying to say is I know, I know, I know how difficult it is to 1)admit you can’t support your own family and 2) ask for help, especially financially. I was so very moved to see my name on your list because I feel it’s such a small donation considering your needs. But I firmly believe what you give away comes back to you twofold, what goes around, comes around. So to anyone out there reading this, I’ll beg for Michael & Susan – please give what you can. We are all in this together. Hugs to you all.

  8. Random Acts of Kindness
    I believe that everyone in the world should do their best to positively impact the life of at least one person. If everyone followed that belief, the world would be a much better place, and perhaps we would all get the help that we need when we reach the bottom of the pail. Therefore, giving to your family the small amount I can afford causes me no suffering. It does cause me joy because I know that in some small way, I helped. And helping others brings me joy. Helping others allows me to hang onto the belief that we are good creatures and that maybe someday, all who are needy will have their needs met.

  9. Hi I don’t have a credit card because I’m still young how do I then donate something? I’ve been thinking about your situation but I seem to have a status quo in my ability to solve it. If I look at your current situation you cannot afford two appartments. Jani and Bodhi cannot live in one appartment together 24/7. Donations are no steady stream of income to rent an appartment ( I don’t know how much donations you get so i have to take it as no steady source of income ). You do not want to send jani to residential care permanently. So that leaves almost no options if you do not get big donations. If in that case is there perhaps a possibility to send jani to residential care for a short period of 4 or six months? In which you can work alot , finish the book and save money so that you can rent two appartments again. Or if you do not want to send her away bring bodhi to friends or family when jani is around and you cannot watch them? So you all live in one appartment but have caretakers for bodhi during the time you cannot watch them. I hope I can think of a good solution for you. Keep believing in yourself bye Tom.

  10. problems with Paypal donation link
    Hi Michael – I’m also having trouble with Paypayl – I’ve tried many times to log in via the ‘Donation’ link on yr blog, but the password is not accepted. Yet, when I go to Paypal direct, it *is* accepted – so I know the password is good.

    I’ve worked out that instead of using the ‘Donation’ link, I shd be albe to send you money via Paypal direct but I need your email address to do so. It’s not much $$ b/c I don’t have a job, am studying & am almost broke, but I can’t sit here and do nothing. I just can’t.

    Please let me know what email address you have that is connected to yr Paypal and I’ll transfer what I can. Thank you so much. My email address is: charley_pictures@yahoo.com – and when I am employed, I will be able to give more 🙂

    You are all in my thoughts,
    Charley
    from Qld

    Note from Michael: Hi Charley. thanks for the gracious and wonderful offer to help but because of people like you we have made it. I paid the rent today, thank you.

  11. I’m so sorry
    Michael, my brother was schizophrenic. He died 8 yrs ago, all alone, and I will never forgive myself. Stay the course for Jani and never give up on her.
    RE;thoughts for fund raising – The Dr Phil foundation gives thousands of dollars to needy causes, and you have been on Oprah’s show – have you contacted either of them?
    Also – Aren’t you and Susan eligible for food stamps? That might help so that every dollar could go to your rent.
    I wish I could give you more but I am out of work right now myself. Please take care, and keep us posted.
    Hugs and love to all of you.

    Note from Michael: Thank you, Teresa. I am so sorry for the loss of your brother, but please do not beat yourself up. Sometimes the disease wins. But don’t worry. We will never give up on Jani, nor the mentally ill children of the many other people who have contacted us. I will make sure that your brother did not die in vain. We will change the system so the mentally ill have the help they need to live happily.

  12. I’ve sent a little and when I get to work Monday morning, I’ll be sure to pass your blog along to members of the local NAMI group. I’m praying for you and your family!

  13. I can’t speak for everyone else. Keeping your family together is the most important motivation to give whatever I can. I’ve never seen a family fight so hard together. It’s an honor to do what I can for a family that does so much already.
    Keep loving, and fighting.

    Sarah

  14. Thinking hopeful thoughts for your family…
    Jani’s story is inspiring, I am honored to give what little I can to help her (and you) continue fighting her courageous fight.
    I couldn’t give much, but I hope my small contribution will help your family somehow. The payment won’t go through until the 18th…I hope that won’t be too late.

    Note from Michael: No, it won’t be too late. Thanks to the wonderful generosity of so many like you, we got enough to pay rent on Jani’s apartment and stop the eviction. We will be fine, at least for another month.

  15. Watching Jani’s special on Discovery Health right now. I’m one of the folks who donated on LJ due to Liz’s post. Can’t really afford to, but you know what? I know what it feels like to be less than human due to mental illness. My depression went undiagnosed for years until I started going into severe suicidal cycles. I’m medicated now and it’s working for me, but I could only wish I had the parental support Jani did and does when I was a teen and suspected I had depression but was told I was just dramatic. Jani needs to stay with you, period. I just only wish I could pay your rent for you instead of the token amount I sent. Still, I DO hope it helps. If nothing else, buy something for Jani and/or Bodhi with it. A present from a friend in Florida, to them.

    Note from Michael: Thank you. Because of the wonderful generosity of people like you, we were able to make the rent on Jani’s apartment. Thank you so much. And what you said about keeping the family together no matter what makes me feel better about having had to beg for money. I appreciate that.

  16. Michael
    I hope all of us can start working on next months’s rent. Winter is hard on all of us, so Jani will need all our help these next few months. I believe in my heart that you and Susan can give her what she needs to function in this world of ours. All we need is the time to let her grow up with her family. This will win in the end.

    For all of you that I have also never met, I thank you too for the Schofields and the battle they fight every second of the day.
    Jani needs to stay at her little home away from home and as Michael has said so many times, we are on our own.
    Joe

    Note from Michael: Thank you, Joe, for your repeated wonderful generosity. You really helped us out. We did make the rent, thanks. Unfortunately, Jani is back in the hospital (she went in Sunday night) which I will be blogging about soon.

  17. Praying for You All
    Hi Michael, I thought I went through hell with a son of mine who had ADHD. I literally cannot imagine the hell you are going through with and for your daughter—and pray with all my heart you get through it. She looks
    like a beautiful little girl. Hope this donation helps and wish it could be more. God bless you!

    Note from Michael: Thank you, Robin. It did help. We were able to pay the rent on Jani’s apartment today.

  18. You and your family are an inspiration………….and for the person who is not a fan of yours then why does he follow the blog. We do not need his negativity.

    Note from Michael: Oh, he is kind of obsessed with me. Don’t let him bother you. He doesn’t bother me. He just comes and goes, using various names, always trying to prove that I am abusing Jani. He doesn’t believe in schizophrenia.

  19. First of all, sympathy for the tremendous strain and hardship you and your family are going through. You and Susan have fought so bravely to keep Jani at home.

    I know it must be difficult to think clearly about options, or to manage transitions, in such a rough time. But it seems to bear asking: have you honestly, critically considered your and Susan’s employment, and whether your situation could be mended by changes there?

    I ask only because I happen to know (as a former humanities grad student) that English adjuncting is the crappiest, most poorly paid job out there. It has nice flexibility, limited hours and high status, but it’s unstable, and per hour you get paid about what a Wal-Mart checker gets.

    There are a ton of other jobs out there for M.A.s– either public or private high-school teaching (especially!), copywriting, administrative gigs, heck, even retail or entry-level at your local academic library– that would be more stable and pay considerably more than you’re currently earning. You’d have to get Susan to watch Jani during the day and send Bodhi to daycare full-time, but you might be able to keep your financial ship steadily afloat in a way that ad-hoc donations can’t.

    It’s unfortunate, and (as a mom!) I understand the deep need to be with one’s kids for longer than the standard 40-hour workweek allows. But this is how economic specialization works: educated and skilled people work, so that they can pay less-educated and less-skilled people to look after their children AND have some money left over.

    Alternatively, has Susan considered getting a full-time job (again, not sure what her qualifications are, but even a receptionist gig should be able to net her enough for daycare + a small contribution to the family finances) in addition to your current part-time work?

    Sorry if this seems presumptuous; I just know, having been there, that you don’t HAVE to be making so little money.

    Note from Michael: I get what you saying but taking care of Jani IS a full-time job. I don’t adjunct because I can’t do anything else. I do it because it gives me the most time with Jani and she needs me, just as she needs Susan (who used to work as a news/traffic reporter). Jani needs stimulation and engagement every waking moment or her hallucinations take over and she becomes self-injurous. The only reason I work at all is because CSUN actually pays health benefits to adjuncts who teach six or more units, and I obviously need the health benefits since Jani is hospitalized frequently. So it is not able not being able to get a better job. This is what we have to do to keep our daughter reasonably functional and out of residential. We cannot work full time because of that. If that means I have to beg for donations, then that is what I will do to keep my family together. If either Susan or myself worked full-time, what would Jani do? Who would take care of her? Who can engage her and keep her safe like we can?

  20. Hope this helps
    Hi Michael,

    I’ve been following your blog for some time now and I too, struggle with mental illness (OCD, depression, anxiety). I’ve been hospitalized twice and have been in outpatient programs. I was diagnosed at the age of 9. I am now 26. I live in the same city as you so if there is anything I can do to help, please let me know. I will be donating some money and hope it helps a bit.

  21. I’m just slightly confused when you say that you are “ready for whatever happens,” that appears to not be the truth since you cannot seem to commit to the fact that you will, eventually, not be able to financially support your family in the way that you are currently trying to. I don’t wish your family any ill will in any way – but realize that you have admitted that you will have to beg online for money from strangers every month until who knows when. I honestly believe you need to look at your other options, no matter how much you may hate them and hate yourself for considering them, and realize that what you’re doing is really no longer a viable option. I wish it was for you – but, from what you’re saying on your blog, it doesn’t appear to be…

    Note from Michael: And what other options would that be? No, I am not going to sacrifice my daughter just to avoid the embarrassment of having to beg for money. Like another reader above, you don’t seem to realize this is not about me not being able to support my family. I have an MA and I’m a college lecturer. I could very easily get a better job. But the job I have allows me the most time with Jani, and she needs me and Susan, nearly all the time. She is back in the hospital tonight and partly that was because she couldn’t handle being away from us for even 50 minutes. Because Jani’s illness requires her to have constant attention, I cannot work any more than I do, and I am certainly not going to send her to residential and break up my family just because some people think this is untenable. You may be right, but thankfully I am not you and I will not give up on my child and my family.

  22. Michael,
    If you and Susan ever wanted to move to Buffalo Ny I would let you live in our upper 3 bedroom apartment for free.
    It’s a large apartment with its own covered front porch… There’s a park around the corner and we have numerous colleges that may be a source of employment…
    I am serious. I am a single mother of 2. My son has numerous challenges. I am a member of your online support group.
    Our current tenants will be leaving soon.

    Please think about it.

    Karen

    Note from Michael: Yes, I know you, Karen. I would love very much for all of us, all of us on the support group, to live in a common community where we could render aid to each other. I appreciate the offer, I really do. The only thing that stops me is UCLA is here and I worry about how Jani would deal with a move like that. This is all she is ever known and she doesn’t deal with change well. It tends to push her back into psychosis. I don’t want to do that.

  23. Here is $100. I’m sorry I can’t do more. I have posted your blog on my facebook page, and explained your situation. Maybe that will garner some more. Best to you and your family.

    Note from Michael: Thank you, Mike. Many wonderful people like you have come through for us and I am happy to say I was able to pay the rent and legal fees today on Jani’s apartment. We will not be evicted.

  24. I was first introduced to your blog by my Abnormal Psych professor and I’ve followed it ever since. I truly wish I was able to give more. I think what you are doing is amazing. Good luck.
    Heather

    Note from Michael: Thank you, Heather.

  25. Michael, I think that you are awesome. I have been struggling trying to keep my son out of residential care for the last 5 years. I have lost most of my battles and I know they are not over. We have been the only constant thing for our son and I am afraid the hospitalizations and placements have not been good for him. He is working so hard to meet standards that he will not be able to achieve. We have recently gotten him approved at a facility that is 25 minutes from our house, the closest to us he has been in 5 years. No matter what people think and say our goal has been to keep him home with us. I am exhausted, I am broken, and I can’t think of anything harder to have to deal with. I commend you on your constant commitment to your daughter. I am sure that you see, as we have seen, that children like your daughter and my son so often get passed from agency to agency and the parents slowing but surely end up out of the picture. I can tell you in my very honest, scary opinion that residential treatment has been the worst thing that has happened to my family. There is no easy answers, and there is probably no one out that can understand what it is your going through, our eexperiences are all so unique. I can tell you that your fight to keep your daughter home is amazing and I pray that your family never, ever has to be apart.

    Note from Michael: Lisa, I am so sorry. Are you aware of our private online support group for parents of mentally ill/spectrum children? Here is the link: http://health.groups.yahoo.com/group/parental-support/. It might be nice to know you are far from alone.

  26. Tis the season
    I’m a student and on a pretty limited income myself, but I sent some to pre-emptively help out with the next month. As a kid who grew up with mental health problems (though none so challenging as Jani’s) I know it can be really difficult to find the specialised care and support children with mental health issues really need. Best of luck.

  27. If the cause is just and honorable…
    Michael,

    As many others have stated, I only wish I could do more. I applaud your raw honesty on this blog. What better representation of your own humanity than sharing the positive moments and the negative ones, the highs and the lows, each in their full force. I appreciate that you want all of us to see the world through the lens of your family and Jani’s journey with her illness. When we have manufactured “causes” like the “Octomom” and the “Balloon boy” it is refreshing to see someone be so honest and real about such a terrible struggle.

    My heart goes out to you and your family, especially now during the holidays. If ever I am in a position to help, I surely will try.

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