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This is My Message to You: Ni dyar'izuba, Rizagaruga, Hejuru yadju, Nduzaricyeza ricyeza

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Blog title is Kinyarwandan. It means “When will the sun rise again? Who will reveal it [to] us again?”

 

In the late summer of 2000, Ottawa police were called to a local park, where they discovered a disheveled man on one of the park benches. He had been drinking and was slipping into a coma.

 

He looked like a homeless man who had had one too many, except for the empty bottle of anti-depressants by his side.

 

And the Canadian Army ID card in his wallet.

 

Only then did police realize that they had interrupted a suicide attempt to fatally combine alcohol with an overdose of anti-depressants. And only then did they realize that the disheveled man trying to kill himself that afternoon on an Ottawa park bench was General Romeo Dallaire.

 

For most of you, certainly if you are American, Dallaire’s name probably won’t ring any bells. Yet the reason he was trying to kill himself was because of feelings of guilt and inadequacy.

 

What, you ask, could he possibly have done?

 

Nothing. And that is what he hated himself for.

 

Romeo Dallaire is a hero. Romeo Dallaire tried to save hundreds of thousands of lives. Yet the men and women who tied his hands behind his back were sleeping just fine the day that Dallaire tried to kill himself. He had nothing on his conscious because it was not his fault he could not save 800,000 people. Yet he took on the guilt that belonged to others. He took it on because he, unlike his superiors, was there to see what happened.

 

General Romeo Dallaire was witness to a genocide that closed a century of genocide that began with the Armenian Genocide by the Turks in 1915 and continued with the Holocaust in World War II and the Killing Fields of Cambodia in 1975. The technology of warfare made genocide just so damn easy in the 20th Century.

 

In 1994, Dallaire was assigned as commanding officer of the UNAMIR, or the United Nations Assistance Mission for Rwanda, and from April 6th until June of that year watched helplessly as militant Hutu militias and the army of Rwanda slaughtered approximately 800,000 to 1 million Tutsis and moderate Hutus in what would become known as the Rwandan Genocide.

 

The UN had assigned the UNAMIR peacekeeping force to Rwanda to oversee the implementation of the Arusha Peace Accords between the Rwandan Government, dominated by Hutu President Habyarimana since 1973, and the Rwandan Patriotic Front, made up of rebels fighting for the Tutsi minority and led by current Rwandan President Kagame. UNAMIR was assigned over the objections of Rwanda, which at that time had a seat on the UN Security Council, and the United States which, still reeling from the death of American soldiers in Somalia the year before, refused to commit any troops to the peacekeeping force. Eventually, the UN dispatched a force of 400 peacekeepers, made up of soldiers from Canada, Belgium, Ghana, Tunisia, and Bangladesh. With the exception of Canada and Belgium, all the other countries had (and still have) most of their populations living below the global poverty level. Belgium was a former colonial power that had occupied Rwanda and typically the UN does not allow former colonial powers to serve as peacekeepers in countries they once colonized, but the UN was so desperate for troops that they had no choice but to accept Belgium.

 

The genocide began when President Habyarimana’s plane was shot down as he returned from signing the Arusha Peace Accords with the Rwandan Patriotic Front (RPF). Within hours, Hutu militias, some armed by the Rwandan Government Forces (RGF), others with machetes, took to the streets, encouraged by militant Hutu Power radio, and began slaughtering every Tutsi they could find-men, women, and children.

 

Dallaire’s UNAMIR peacekeeping force was hampered by strict rules of engagement which prevented them from firing unless fired upon. Yet, when ten Belgian soldiers protecting the Prime Minister were captured and killed, the response of the UN was not to send more troops but to order UNAMIR back. To this day, Dallaire is still blamed in Belgium for caring more about the Rwandans than the European soldiers under his command.

 

By the way, the Belgian soldiers were tortured. Their genitals were cut off with machetes and then shoved down their throats. Yet the Belgian government’s only response was to pull its remaining troops, leaving Dallaire with only a handful of peacekeepers to stop the slaughter.

 

Dallaire begged the UN Security Council, and specifically the Americans, for 5,000 additional troops, which he felt would be sufficient to protect the Tutsis from the slaughter. The UN and the US denied his request, citing safety concerns, despite Dallaire’s urgent, daily messages detailing the rising death toll. It takes a lot to kill nearly a million people in a little over sixty days, meaning that if we average the death rate out, over 13,000 ethnic Tutsis and Moderate Hutus were being killed every day.

 

And a force of 5,000 American special forces could have stopped it. But the Clinton Government wouldn’t even publically use the word “genocide” until late May, by which time it was nearly over.

 

Ultimately, what saved the remaining Tutsis, and Rwanda itself, was the RPF. The rebel group finally took the capital Kigali in mid-June, which ended the genocide.

 

I am not going to call the treatment of psychotic children in the United States genocide. That would be too much. But I bring up the Rwandan Genocide because there are similarities. Not in the death toll, of course, but in the way that those in power, the bureaucracy, failed to protect those who could not protect themselves. The UN and the US twiddled their thumbs and hid behind rhetoric while hundreds of thousands died.

 

Mental illness itself is Africa, and nobody in the West really cares about Africa. It is too far away for most of us, a dark land that we visit only in the imaginations of Hollywood films about “psychotic” killers that make us scream with terror and delight.

 

NAMI walks and BringChange2Mind are the equivalent of Live Aid. Useful for bringing awareness to something you would ordinarily never think about, but those that attended the Live Aid concerts in 1985 were already the ones most likely to care about African famine. When I attended the NAMIwalk in my area, I saw only those whose lives had already been touched or affected by mental illness… and vendors trying to turn a buck. This means that NAMI is preaching to the choir. If only those who are affected by mental illness participate in the NAMIwalks, then nothing will change. We are just recycling the same old slogans we already believe in. And Glen Close’s BringChange2Mind is a much smaller version of Bob Geldof’s Live Aid, using celebrity to grab the attention of the public for long enough to say “Oh, there’s Glen Close talking about mental illness” before they move on to “Dancing with the Stars.”

 

The Hutu Militias are psychosis itself. It kills indiscriminately without concern for your age, gender, or station in life. Sure, you can buy it off for awhile for a few thousand Rwandan Francs or a wad of American hundred dollar bills, but there is only so long you can keep it at bay. Eventually, it is going to come for its victims with a machete to the mind.

 

The Tutsis are our children who suffer from psychosis, whose lives are cut apart by its militias. It is one thing to look upon Jani and think how cute she is. It is another to still feel that way when she attacks you or bites you. Children tend not to be so cute then.

 

And when the enemy of psychosis attacks, and our children are fighting for their lives, the “peacekeepers” abandon them, concerned, like the Belgians and the Americans, more with their own safety than protecting the innocent.

 

The UN is, of course, the Department of Mental Heath: detached and unconcerned for the slaughter on the ground. All they care about is that, they like the UN, get their funding. Like the staff of the General Secretary, the DMH nods sympathetically when you radio from Rwanda desperate for help to stop the slaughter of your child’s mental life, yet when you ask for help, the offer only excuses.

 

And the agencies that the DMH contracts with to carry out “services,” such as the Santa Clarita Child & Family Center, are the “peacekeepers,” undermanned, underfunded, underequipped, undertrained, and ultimately unwilling to open fire “unless fired upon,” at which point they will just call the police.

 

The point of all this is that agencies that provide mental health “services” like Wraparound and Full Service Partnership make the same mistake that the UN made in Rwanda: they assume that their simple presence will be enough to stop the slaughter. Like the UN and the Pentagon, they write up detailed plans for our children. They love to set “goals.” But they provide no way to meet those “goals.”

 

It has been said that “war is diplomacy through other means.” In the end, you cannot stop a war, you cannot save innocent lives, unless you are willing to pull the trigger. Plans and goals mean nothing unless you are willing to carry them out by whatever means necessary.

 

So to the parents of psychotic children who have not sent your children to residential, I salute you. You have kept up the fight against overwhelming odds. You may not be winning, but at least you are letting the psychosis know that you will not let it take your child without a fight. You will open fire if you have to.

 

The 800,000 Tutsis and moderate Hutus are the children and adults we have already lost to mental illness. And it wasn’t the stigma that killed them. It was the fact that there were no boots on the ground to shield them and protect them. The ten dead Belgian soldiers are those who had nothing personally invested in mental illness but were willing to pay the ultimate price for what was right.

 

The Jani Foundation is not another speaker on the floor of the UN. It is not another recycled speech about stigma and the need for mental health awareness. We are building an army to fight back against psychosis so that those children that suffer from it can live happy, fulfilling lives.

 

Dallaire, now, among other things, an advocate for veterans’ mental health, wanted to kill himself because he felt powerless. I have no doubt that every day he spent in Rwanda during the genocide, he wanted to pull the trigger, but he was badly outnumbered and under the command of a body with no spine to do what had to be done. I know that feeling. I know what it feels like to be powerless in the face of a much more powerful enemy. I too have had my moment on the park bench. Everyday I still struggle with the desire to give up.

 

Jani is not getting better. Everybody who is left around her has noticed how she will sometimes look up, her eyes appearing to follow something circling above her head. When I ask her what it is, she says it is the “Nothing Family,” which according to her are dogs. Yet she cannot explain how, if they are dogs, they can fly. She believes she is in Calalini and insists she rode Great Danes to get there (which is really wherever she happens to be) even though we drove to that destination in our car. When she spills water on herself, she is back to ripping off her shirt, even if it in public. Since she is approaching eight, we desperately try to discourage this (she will also strip naked immediately after coming out of the pool because she is “cold,” regardless of the fact that there are people around. You talk about stigma? My daughter isn’t even aware of her surroundings enough to even acknowledge the embarrassment of nudity in public, let alone give a damn about stigma. The other day she spilled water on herself in a Chuck-E-Cheese and tried to take off her shirt. The spill was small, yet when I tried to stop her, she screamed and dropped to the floor. She hasn’t gotten even the slightest hint of breasts yet, thank God, but unable to get her to put her shirt back on, I ripped off my own shirt and put it over her. I realize Chuck-E-Cheese has a “No shirt, no shoes, no service” policy but I would I go topless than Jani. I too have no time to give a shit what other people think. When she does this, I try to get her to the car or a private place as quickly as possible. An hour later, when her shirt was bone dry (it was a warm day), she still insisted she could feel wetness and wouldn’t put it on so we could go into the grocery store. Instead she got out of the car and lay down in the parking lot. I tried to get her to get up (she is too heavy now for me to easily lift and I would fear accidently dropping her to the concrete). When a car came, I turned my body toward it to try and shield her if it struck. I would rather it hit me than her, which in practice is stupid because Jani needs me 24/7, except when she is asleep. She won’t even go to school without me, although she no more listens to me than her regular teacher. Functioning on all levels is dropping.

 

Yesterday, she got water on herself again. We were at the car, a private place, so I told her she didn’t have to wear her shirt. It was okay. But it wasn’t okay because she insisted on putting it back on, even though I kept telling her she didn’t have to. Then she hit me, threw everything in the car she could get her hands on, and finally ran off down the street. Terrified, I was ready to call the police, afraid she would run into traffic and get hit by a car. The more I chased, the more she ran. Eventually, I got her to agree to stop before the busy cross-street if I stopped chasing her (I’d actually had to get in the car to give chase). I waited, engine running, taking to her from the other side of the residential street, trying to calm her and distract her. I asked if she wanted to go to the store to get hush puppy mix (which she wanted for dinner). She suddenly stood up, a smile on her face, and said, “Yes,” crossing over to the car and getting in like nothing happened.

 

Yes, we have few interns left, but I am not sure it would make any difference even if the larger program was still intact (although they remind me of UN peacekeepers who fled the field of battle once they realized they actually had to fight). I am the only one she wants, despite the running away (which she has never done before). She will not allow me any break. It is like she is clinging to me as her only remaining link to our world. I am Romeo Dallaire, desperately trying to keep the psychosis from killing Jani.

 

And for now at least, there are no reinforcements coming.

 

It is just me.

 

Of course, I’m just talking, too. I have to. I have go back into battle tomorrow.

Still, there is still light sometimes, even in the darkest of nights. Yesterday, on the way home from school, after that incident where she ran away from me, Bob Marley’s “Three Little Birds” came on the radio. Needing something, anything, I started singing along, enjoying the feeling of the sun coming in through the driver’s side window.

 

Then I realized Jani was singing along with me.

 

Thank you, Bob Marley.

 

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15 comments on “This is My Message to You: Ni dyar'izuba, Rizagaruga, Hejuru yadju, Nduzaricyeza ricyeza

  1. It’s great to find a new post online again! Having followed your and Jani’s journey so closely (by that I mean reading whatever is available on the net), I feel anxious to know how she is doing? I really do feel for all of you..
    With love and prayers,
    Jen.

  2. You sound more defeated and desperate, my friend. That frightens me.

    I would never try and convince you that you should try residential treatment for Jani. I understand your concerns and the lack of suitable facilities for a child so young.

    But it is the one thing you haven’t tried.

    Yes, Tim is in residential. Yes, he’s been in residential for 10 months. Yes, the first months were terrifying for me, and he was homesick as hell. Yes, I traveled up to see him every weekend and talked to him on the phone nightly.

    Yes, he is improving. Yes, he has – finally – stabilized on intense therapy, the right meds, constant activity, ridgid structure. Yes, he still has some moments of anger. Yes, I still talk to him on the phone 5-6 nights a week and see him 2-3 weekends a month. Yes, I wish this wasn’t a choice we had to make. Yes, in hindsight, I am glad we took our time and did intensive due diligence on all the residential options, and yes, I’m glad we made the choice to try residential.

    Yes, he will come home.

    I wish you felt more like Rusesabagina, and less like Dallaire.

    Note from Michael: But Tim is older. It sounds like Tim is in a good facility. Jani is only seven and the only offers of residential have been to out of state facilities that have questionable reputations.

    But ultimately Tim and Jani are different. Tim could go to residential and not slip further into another world. Jani cannot. If she goes to residential, unlike Tim, she will never come back.

  3. hello..
    my parents have a similar fear to you.. they said they are afraid to send me to hospital again.. in case i lose the tiny amount of trust i have left with them.. and ill disappear and not talk to them or see them again..
    i too, like jani runaway but thats when i get really scared that someones trying to get me.. usually my older brother catches up with me(my parents arent that young).. i too when im scared dont care if a car is coming towards me.. cause it better to get hit by a car then let them get me..
    i hope jani is ok

    Note from Michael: Today was a better day. How about you? I hope you are okay. I am glad you have your family. And thank you for vindicating the road I have chosen with Jani.

  4. Jani
    I forgot to mention that I want to thank you for telling that pompous jackass Dr Phil where to get off. I hope he hasn’t tried to worm his way into Jani’s life. Personally I wouldn’t allow him within a thousand miles of my child.

    Note from Michael: We were approached by one of his producers nearly a year ago, before Oprah, and we said no. We didn’t feel his show was the right place and given what he did to the Wohlenbergs, we were right.

  5. also
    also hang in there! jani and bodi need you im sure they cant imagine a life with out you. neither can your wife and parents.

  6. Precious Jani
    Michael, I don’t know when you might have time, but you should write a book. Jani’s story is not only fascinating, but also heart wrenching and heart warming! You are an excellent “story teller” and I look up to you and Susan (and Jani and Bohdi!) in many ways!!
    Sending Prayers Your Way,
    Brandi Henderson

  7. reinforcements
    I have wanted to contact you, to tell you something. I never did before because I guess you probably get this message …hundreds…and this one might not make a difference…or fall through the cracks. I am going to take this shot, because it comes from my heart and soul hoping it will reach you and yours. I am an occupational therapist and I work with children that are very similar to Jani. The kids I work with, have the behaviors like Jani, and have diagnosis like Jani. The kids I work with are in a residential setting. I can tell you, that I have come to LOVE each and every one of these kids. I am passionate about the work I do, every day, with each individual child, each with their different and multiple needs. My co-workers, from teachers, to behavior therapists, to psychologists, psychiatrists, nurses, to the aids (and everyone inbetween) also love these kids (and families!). This work, is not for everyone. It is for me and I really feel fortunate to be so lucky to have bonds with individuals that are special in their own right. I want to tell you that there other people like myself. I want to know that YOU know that. I wish I could sit with you and your family, especially Jani. I would love to get to know you guys. My overall point, is that when you ponder the “R” word, is that you remember there are people that will embrace her and you. (No one wants to put their child in a residential program ultimately.) Your situation is difficult to say the least. Please know that people like me…we are out here, ready to hold you each individually, and by holding on to you we can help hold you all together. Be well, T

  8. Bob Marley
    “Emancipate yourselves from mental slavery, none but ourselves can free our minds!”

    We always have hope.

  9. My family has been locked in a battle with my elderly grandmother’s nursing home. Staff members (despite repeated requests from my sister, my parents, and me to stop) continually nag nag nag my grandma to push the call button if she needs help. They chastise, heckle, and scold. There are half-a-dozen hot-pink signs in her room reminding her to “Press the call button if you need help!”

    She presses the button. Maybe somebody shows, maybe not. It’s rare they arrive in the time necessary to get her to the bathroom without an accident, so they end up cleaning her up instead of walking her to the bathroom. Dignity preservation? No, not on the menu.

    My feelings as I deal with all of that are identical to those that I have when struggling to get appropriate care for Carter (same age as Jani). Cogitating on that the past few weeks, I’ve realized that there is one fundamental difference between old age and mental illness: they are unpleasant. They make people uncomfortable. Unlikable and even unlovable, to those who do not know and love them.

    The issue? Dollars. Money before humanity and I have some very dark days around that, too.

    Where the similarity ends? We found a wonderful new place for my grandma because the family trust holds enough money to pay almost any amount. I could access that trust for the best care for Carter, too, but it doesn’t even exist. Carter doesn’t need residential; he needs a great day program, but that distinction doesn’t matter. Day treatment or residential, not a high-quality option for either here.

    Love to all four of you.

  10. Dear Mr Schofield

    Good to hear from you and your family again. I check your blog everyday.

    I think I can understand your reservations about sending Jani away. One thing I have learned is that every person’s experience is unique. Some people respond really well to hospitalization or residential care, but others only seem to become worse. It is all relative to each individual’s situation and personality.

    I know that many of the times I have been hospitalised under the mental health act I have wound up getting a lot worse and took much longer to recover than the times that i have had help from a home treatment team (in the UK psychiatrists, psych nurses and social workers that visit you at home and monitor your condition and medication). I guess I just feel so much safer in my own environment and feeling safe (in my experience) is a big thing for people with schizophrenia

    Some of my aquaintences, however, have had very different and more positive experiences with hospitalization or residential care than I have had.

    Trust in your judgement mr Schofield.

    My mother once said that having a child develop schizophrenia is like losing that child. There is so much she still struggles to understand and yet, she knows what i need and understands me better than anyone else in the world.

    Just like you know Jani…..

    Regards to you, Susan, Jani and Bodhi

    sincerely,
    Lin

    Note from Michael: I appreciate your passion, Lin, I really do. But even putting aside that it is the State DMH and insurers that determine residential placement (which will always be the most expensive option-The caring you describe costs money) residential centers, no matter how wonderful, should not have to exist if we provided in home services for families with mentally ill children. Like I said, I appreciate and admire your passion and determination, but your very job exists because the system is so flawed it would rather break families help than help them stay together.

  11. Hello, I have not seen your dicovery show but came across an article on ABC. I feel the need to comment. I believe it is no accident this situation your find your self in. You are where you are supposed to be. If you wonder about purpose and all those questions, I would have to say the answer is that you are the exact person for the job. Your ability to articulate and educate is what is building a bridge out of the darkness. You said once in response to a persons comments about God-“when you ask God for help he sends people” You are that person, that help, the answer to the prayers of multitudes of confused and tired parents. Who could understand better than one who has suffered.
    May you have Peace Everlasting
    Oh yea and listen to Bob he knows what he’s talking about.

  12. Hi Michael,
    I’ve just finished reading ALL of your blogs (even the old ones on the other website) and I have to say that I find them incredibly inspiring. I’ve been battling anorexia for nearly five years (since age 17), and I officially entered recovery in February after almost needing to be hospitalized. While Jani is MUCH worse off than I am (and I cannot compare my struggle to hers), I do draw strength from both Jani’s and your family’s will to keep fighting. It is such an inspiration to know that there are people all over the country and the world fighting back against the obstacles in their lives, and none of us are alone.

    Jani seems like such a precious girl. Keep fighting for her, as it would be a loss to the world if she were to leave it. I’d be honored if I grow up to have a daughter with half her spirit.

    Keep blogging! 🙂

  13. Dear Mr Schofield

    Thanks 4 the reply 🙂 You mentioned something about my “job” that i didn’t quite understand. I dont have a job… not been able to work for the last 6 or so years. I am also on Clozapine which has helped a bit. By no means has it cured me. I still have symptoms but they are a little easier to sort through on the meds.

    You are so inspirational. Please, if there is any way at all i can help. I would be honoured.

    Have a wonderful weekend
    Sincerely,

    Lin

  14. Jani
    The way you report your experiences remind me of a line from Margaret Millar’s short story Mind over Matter:

    “Even if the truth is devastating, and it often is, I tell it.”

    Bob Marley is wonderful. Upbeat.

  15. I remember wanting to run away at Jani’s age. I would sit down on a curb refusing to move and my dad would slowly talk me back home. Yes, it’s bad, but if on a normal day Jani isn’t inhibited about following you into the bathroom at least there is a continuum. Springtime is always rough for me and I’m not sure why. Suicides peak in the spring.