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The Devil You Know

Chrisa Hickey2 comments


The Devil Made Me Do It
 We’re learning the hard way that the old adage is true. If it ain’t broke, don’t fix it.

To be fair, it was a bit broken. Tim went on Clozaril a month before his 15th birthday and last fall we decided it was time to try and get him on to another atypical antipsychotic because, after four years and change on Clozaril, his blood pressure and blood sugar were elevated with no signs of retreat. Working with his doctor it took six months to transition him slowly off of the Clozaril and on to another medication, during which time he was inpatient twice. But once winter ended and the transition was complete, it looked like it might be ok.

Turns out we were all wrong. Tim spent 14 days in September inpatient again. He’s been a bit paranoid over the summer, but by the beginning of September, the change in his routine as school began again was enough of a stressor to prevent him from being able to keep it in check. Tim is the king of “holding on.” He stuffs his symptoms until he starts to spin like top, then the top explodes. We were concerned when, the week before he went inpatient, he was spending an extraordinary amount of time in his room, door closed, headphones on, singing at the top of his lungs. The louder and longer he does this is typically an indication that he’s trying very hard to drown something out. In this case, it was the paranoid delusion that his sister was trying to humiliate and/or harm him, as came out when he was admitted. He has always had definite tells, but this one was hard to distinguish because it was an exaggeration of a normal habit. Arguably we didn’t realize this was a tell until it was too late, and Tim did not give us a heads up this time like he did back over the winter.

So, here we go, titrating back up on the dreaded Clozaril. Back to weekly blood tests and finding a pharmacy that understands how to register the results with the FDA. Back to watching blood sugar, monitoring blood pressure, and yearly liver panels. It pisses me off that I have to choose between my son’s sanity and his longevity, as I’d guess the effects of this toxic chemical with five black box warnings we ultimately shorten his life. I suppose it’s better than the possibility that his life will be shortened by suicide or some external danger that he may encounter when psychotic. It doesn’t make the choice any easier, but it is the devil we know.

Image by Frank Kovalchek

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My posts over at

Chrisa Hickey1 comment

Hi –

I know -it’s been a while since I’ve posted here. I promise, I will get a post up soon.  Until I do, I wanted to tell you that I am now blogging for on the Mental Illness in the Family blog.  here are the latest posts over at HealthyPlace:

Just Lighten Up: Mental Illness Stigma and Parenting Blogs

Mental Illness and Learning to Let It Go

Vigilance and Paranoia: Living with Mental Illness

I hope you’ll join in the discussion over there.  Thanks for stopping by!

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Sadness and Wonder

Chrisa Hickey5 comments

It’s been quite a few interesting days since my last post.


Tim was discharged from the hospital after a 6 day stay with an increase in his Latuda. He was a bit withdrawn but seemed to be ok until a week later, when he had a violent outburst centered on my and Tom’s trying to get him to take his medication. He said the increase had made his stomach hurt and refused. When we tried to discuss it with him (and tried to get him to chew less gum and try some Pepcid AC) he became violently threatening. That subsided fairly quickly, but the following day he went back inpatient after “loping” (Tim speak for “eloping”) from his school. It took the Skokie PD to get him to the ER, where we were told there was just one bed available in all of Chicagoland, and not at our usual psychiatric hospital.

Out of options, Tim was admitted there this past Friday. Sadness hit me especially hard with this because, first, it means the system again failed my kid, in that he was discharged not when stable, but when he wasn’t actively violent or suicidal. Second, I feared our monumental efforts over the past six months to get him off the Clozaril would be reversed as Latuda was proven to be ineffective. Luckily, we got a good doctor at Highland Park on a young adult ward who finally listened to us and, more importantly, to Tim about his anxiety and how it manifests in his stomach. She didn’t change the Latuda, but did add an anti-anxiety med which seems to be helping. Tim was discharged Monday, back in the ER on Tuesday. We decided to keep him home a few days to see if the anxiety meds will help. Too much stimulus is just intolerable for him right now. I fear we may never get through an entire year without Tim being inpatient.


The past week I’ve been helping out a Parent Like Us reading comments and messages sent to her son via a Facebook page she set up for his birthday. Colin will be eleven in March and here’s his story:

As you may know, the story went viral, and more than 2 million people have “liked” Colin’s birthday page. There have been hundreds of thousands of comments and hundreds of thousands of messages sent to the page as well. Being that Colin is a kid, his mom reached out to friends to help screen them all before the big day to ensure the messages were appropriate for Colin. It’s been a big job – there are about 10 of us working every day, several hours a day, weeding through the messages that at one point were coming 15 a minute.

When I started helping I did so to aid another mom of a special kid who needed help. What I’ve discovered, a week in, is an incredible level of wonder at the collective goodness and kindness of the world and all of the people in it. I’ve read and responded to messages from kids, teens, and adults from every continent save Antarctica. There are messages of love from Palestine and Israel; from Iraq and Iran. They come in Portuguese, Arabic, Farsi, French, Flemish, German, Spanish, Hungarian, and Russian. They come from children and grandparents; men and women. They come from adults who were bullied or had issues to overcome as children; they come from other moms and dads who feel the love being showered on Colin as a love for all special children in the world, including theirs. They express their love in single sentences and long letters; in hand-drawn art and in emoticons.

It is far and away one of the most positive and uplifting experiences of my life. Just read a few hundred comments and see if you don’t get lifted out of the winter doldrums. It’s impossible not to smile reading them. The world truly is full of love. It just took this little child – Colin – and his mom to lead us to a place where we all share it.

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Relationships and Unwanted Guests

Chrisa Hickey6 comments

Both Sides

I have two relationships with my son. One is the “normal,” mother and son relationship. That’s the one where we discuss what happened at school, whether 10 cups of popcorn is an appropriate after school snack, and what he wants for his birthday. That’s the relationship where he hugs me goodnight and we giggle after singing karaoke in the family room. That’s the relationship where I cheer on his basketball team and congratulate him on his latest fishing achievements. That’s the relationship where I have hope for his future. Then there is the other relationship; the one with his illness. That’s the one where I try and reason my way through his paranoia. That’s the one where I fear for his safety and, sometimes, mine. That’s the one where there is no future because the jury is out on whether we can even make it through today.

I had just gotten into my car at the airport after returning from a two day business trip to Buffalo when Tom called. “Tim’s in an ambulance on his way to the hospital,” he said. I stopped breathing and my brain automatically calculated the amount of time Tim has been out of residential care; just shy of 10 months. When I resumed drawing breath I posed a question I knew intellectually was stupid but emotionally I needed to ask. “Why?” Details were limited, but Tom relayed the ones shared by his teacher at school. Tim wouldn’t get in his car to come home. He expressed he did not feel he could be safe and needed to go to the hospital. An ambulance had come to retrieve him from school and his teacher was following behind in her car. Tom was on his way as well, across the county to meet Tim at the ER.

What followed was the clumsy dance of having him seen in the ER, explaining to a stranger that Tim has schizophrenia, getting his psychiatrist on the phone with the ER doctor, and getting him transferred by ambulance and admitted to the psychiatric hospital where his doctor has privileges. It’s an exhausting spectacle in three acts that could have been much, much worse had it not been for the miracles of a psychiatrist that answered his page in 10 minutes flat and did the pre-admission work to get Tim a bed at the psychiatric hospital, and a psychiatric hospital that actually had a bed available when Tim needed it.

I met Tom and Tim at the psychiatric hospital and when I saw my son, I didn’t see him; I saw the illness. He was riding the psychiatric symptom jackpot of mania, disorganized speech, delusions, paranoia, and aural hallucinations. “I couldn’t go home, Mom. My sister is bugging the crap out of me – I don’t know why she has it out for me. I’m not sure why all the cars are yellow. I’ve just got so much stuff going on. She’s being a total brat. Shut up! What is all this stuff flying around? I couldn’t be safe, Mom. I told my teacher.” He kept spitting out these words at a pace that could only be measured in double-digit miles per hour. I congratulated him on being aware enough to know he needed help. “Yeah,” he said, accented with an extended hand, a gesture akin to what one might expect to see from Jay-Z on stage as he punctuates a rap lyric. I asked Tim if his voices were telling him anything and he didn’t respond; he looked upwards, eyes darting to and fro. I know that look. That is the look of the hallucinations, commanding him not to give up their secrets. My heart sank. At that moment I knew he would not be coming home that night. The illness had him, again.

Tim has spent 7,134 days on this planet. Nearly 1,600 of those days have been in inpatient or residential treatment, including the last three. I am angry that I have had to relinquish more than 20% of his life to doctors and therapists and caseworkers. I hate that 1 day out of every five of his life he has spent away from us because of this disease. This bifurcated relationship isn’t fair. I wish we knew how to splice off the relationship with the illness. Conventional wisdom might suggest we need to learn how to integrate the two relationships into a single shared experience. But I’m not willing to do that. To integrate the two is to accept that the illness is an integral part of our relationship. I know that’s not true. Our relationship is shared silliness and singing to P!nk in the car. Our relationship is making pasta from scratch and swimming in Kangaroo Lake. Our relationship is goodnight hugs and eggs over easy on Saturday mornings. I refuse to surrender our relationship to the beast of schizophrenia. It will always be an unwelcome house guest we put up with when necessary, and then turn out into the street once again when we find our center.

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Gus Deeds, 60 Minutes, and the Why of It All

Chrisa Hickey2 comments

Did you see Senator Creigh Deeds on 60 Minutes last night? If you didn’t, stop reading and watch it, below, before you read on.

Such a tragic story, and such a damning and pointed message at society: Gus was a great kid. He was a perfect son. It’s clear the system failed. It’s clear that it failed Gus. It killed Gus.

It fails so many of our children: lack of doctors, lack of beds, lack of treatment, lack of visibility, lack of compassion, lack of understanding – they are all killers.

Why, in Chicago, Illinois, does it take six to eight weeks to get a first appointment with a psychiatrist? Yes – that’s the average wait. That’s how long we had to wait to get an appointment with an adult psychiatrist when Tim transitioned from residential to home care.

Why, at the University of New Mexico hospital, are there, right now, children waiting days in the ER for a bed on the psychiatric ward? Yes – that is happening, today.

Why is the Federal Center for Medicare Services trying to restrict access to anti-psychotic medication for persons on Medicare Part D? Yes – it is under review, now. Write to your Senator to urge him or her to contact CMS.

Why is Congressman Tim Murphy’s Helping Families in Mental Health Crisis Act still sitting, waiting for a committee hearing? Yes – it is an important bill to help increase the number of beds available,  bring services to rural areas, and help clarify HIPAA law so that parents of children over age 18 can still be involved in our childrens’ care.

Why is the standard for discharge from a mental health hospital that the patient is no longer in  imminent danger, instead of stability? Yes – this is the national standard, and it usually leads to a person being discharged long before they are stable.

If you have another few minutes, watch the follow up piece 60 minutes did about the stigma of raising a  child with a mental illness. They laugh about casseroles. Because all that’s left is for us to laugh.

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Chrisa Hickey5 comments

Kelly has been described by the defense team with several labels. Homeless. Schizophrenic. Vagrant. Nuisance. Not once did they call him a man. Never did they refer to him as a human being. 

The verdict came back so quickly. I thought of the OJ Simpson trial but pushed the thought out of my head. A swift deliberation didn’t mean it would be acquittal, I told myself. I was sitting on the train on my way home when I heard the verdicts read live on the radio. Not guilty. Not guilty. Not guilty. Not guilty. It felt like four punches to the gut. As I was sitting among commuters over a thousand miles away from the courtroom, I held my tears in. I held my breath in. And when I finally got to my car an hour later, I wept alone in the darkness, the echo of Kelly screaming for his father playing over and over in my head. 

Pay particular attention to the first 15 minutes, where Kelly completely complies with Officer Ramos. Kelly doesn’t stand up until after he is struck, in an effort to defend himself.

I have gotten to know Kelly’s sister Tina over the past two years, and the thought of her anguish and the chilling sorrow her parents Ron and Cathy must have been feeling in the courtroom at that moment cut me through my soul. This verdict does not and will not ever make sense to me. 

I am blessed that our encounters with police during several of Tim’s episodes were positive, and that I live near a large city that invests in CIT training for its police officers. What happened to Kelly and the Thomas family is a major reason why Tom and I participate in consumer panels during Chicago Police CIT Training classes. I think the best way we can honor the memory of Kelly Thomas is to continue to press for funding for CIT training for all police departments. Write to your county board of supervisors or your alderman and demand CIT training be funded for your local police. Attend a town council meeting and ask why 100% of your police force isn’t CIT trained.  If not for Kelly’s memory, do it for our children, so that we may never have to watch a video of our child being beaten to death while calling out to us and to God for help.

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The Final Word on the Subject

Chrisa Hickey5 comments
The Girl has always wanted a sister. With two older brothers and paralyzing shyness, she had never been able to make many close friends that understood what it is like to grow up girl. So when the bonus kid came into our lives and our home, she was happy to have a sister figure in her life. That all changed last week when I finally realized and The Girl finally understood that she wasn’t being treated as a sister. She was a shill for the emotional manipulation of an intensely self-centered teenage girl with more brains than empathy and a highly overdeveloped sense of denial. Tim, ever the protective big brother, finally realized what was happening was wrong and we needed to know. Don’t let the below average IQ and the psychosis fool you – he has better insight into people than almost anyone else I know, and there isn’t a manipulative bone in his body.

I once told the bonus kid (last time I will refer to her as such, by the way) that she had glommed on to The Girl because she was the quietest and least threatening person in the house. I meant at the time that she had picked The Girl to hang out with because she didn’t have to be emotional around her. I didn’t realize at the time it was a strategic alliance. Not realizing it sooner is the only remaining vestige of guilt I feel in this failed relationship. Once you mess with my kid, it’s over. I don’t care if your 17 or 70.  I know I need to figure out how to separate the behavior from the kid. I know that I am failing at this. I don’t feel good about it.

Tom and I have learned a few lessons in all this. We’ve learned the hard way the definitions of factitious disorders, Borderline Personality Disorder, and precociousness. We’ve learned that all children need to be treated like children, even if they have the ability to talk like adults. We’ve learned that a childlike exterior sometimes hides a damaged, self-centered core hellbent to take the entire ship down with it. We’ve also learned that we’re done collecting strays. Our parents raised us to give more than we take, and we can continue to do that without having to be so personally involved. There’s too much to risk. Finally, and most importantly, we have come to realize that we have the three most amazing kids on the planet, and they deserve all of our time and attention.

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Chrisa Hickey3 comments

pre·co·cious priˈkōSHəs/ adjective 1. (of a child) having developed certain abilities or proclivities at an earlier age than usual.

fac·ti·tious fakˈtiSHəs/ adjective 1. artificially created or developed. “a largely factitious national identity” synonyms: bogus, fake, specious, false, counterfeit, fraudulent

trust trəst/ noun 1. firm belief in the reliability, truth, ability, or strength of someone or something.

Borderline Personality Disorder

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Chrisa Hickey5 comments
Fail Road
I’m failing in spectacular fashion.
Our bonus kid has been struggling with learning how to be part of a family without falling into her old pattern of alienating everyone around her before they can disappoint or hurt her.  She vacillates between needing intense, toddler-like levels of affection to openly despising every word anyone over the age of 19 utters in her presence.  When her actions result in unpleasant consequences she resorts to self-harm and self-loathing.  She has spent time inpatient and spends at least an hour a week in therapy. Her intentions in regards to interpersonal relationships are good; it’s her follow through that is still very much lacking.  The grown-ups in the house aren’t handling it well.  As any parent of a child with a severe mental illness can tell you, there comes a time when you just can no longer handle being treated with contempt every moment of every day.  We know it’s our children’s illnesses, but that doesn’t make it any easier.   Most days we can hold it together and not raise our voices or lash out.  But most days are not most days in our house right now.  
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