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A Long December

Chrisa Hickey1 comment

I’m sorry it’s been so long since I’ve posted.  Winter is long and cold here in Chicago, and frankly, I am, as much as I hate to admit it, I am prone to seasonal depression which makes me pretty much hide out, eat, binge watch Netflix, and shun bearing my soul to, well, anyone. But I stepped on the scale about seven weeks ago and started to bawl.  I’ve never weighed this much in my life.  Ever.  I literally weigh twice as much as I did when Tom and I got married nearly 25 years ago.  I know how it happened.  It was years of giving myself permission to self-medicate with food.  I could literally eat 4,000-5,000 calories a day and nearly never move.  I got a Fitbit in early December and if I broke 2,000 steps a day it was a miracle.

After I stopped crying I decided that I can’t blame it on Tim anymore, or what we went through in 2013, or Wonderboy’s recent decision to distance himself from us.  Tim is who he is, and the ups and downs of his stability are never going to get a whole hell of a lot better than they are now. 2013 happened, and it’s over.  Wonderboy will, I pray, decide that having parents in his life is better than not having them. I can either eat myself to death over all that, or I can accept what I cannot change and stop pretending.  So, I joined the gym at work.  I’m lucky that there is one in the building and it is pretty cheap as gym memberships go, and it has a lot of different equipment and personal trainers at a reasonable rate.  My first day at the gym was Wednesday, January 28, 2015.  I walked 2 miles an hour on the treadmill for 25 minutes. Not even a half mile.  I grimaced, showered, and went to my desk.  I made it 5,000 steps that day.

This morning I walked 3.2 miles on the treadmill in 63 minutes. It’s 1:15 PM and I’ve walked over 11,000 steps already, on target for my current daily average of 12,000. I weigh ten pounds less than I did on January 28th.  And my mood is a hell of a lot better, even though the temperature when my day started was -5 Fahrenheit.  I’m seeing my shrink next Thursday, and I think I’m ready to cut back on my antidepressant.

Yeah – it’s great I’m moving and losing weight.  I’ve got a shitload of weight to lose, so I’ll be doing this for the better part of the next two years, before I figure out the routine I need to stick to in order to maintain weight loss.  But I’m most happy about the unexpected benefit of lifting my mood; really, really, lifting it.  I’m making myself hit the gym five days a week because, well, it’s March folks, and Tim hasn’t made it through a March without being in the hospital or residential since he was 10.

I hate the smell of hospitals in winter.  

I feel like I’ve been stuck in the long, dark, cold December for a long time.  But I do have reason to believe 2015 will be better than the years past.  I refuse to accept anything less, for the first time in a really, really long time.

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Advocacy One Day, But Not The Next

Chrisa Hickey5 comments

Tim - stable...today.

On his blog today, Pete Earley posted a recap of a speech DJ Jaffe gave at the New York State NAMI conference earlier this year.  DJ Jaffe and his mentor, Dr. Fuller Torrey, are two of the most outspoken advocates for AOT legislation in the country.

I have blogged before about my feelings on what Mr. Jaffe advocates for.  He draws a very clear distinction between what he considers, “the most severely mentally ill,” and others with mental illness.  I do not.  There’s a thin line between stability and instability and I don’t see the point in making a distinction between the two, because a person on one side of the line today can easily be on the other tomorrow.
So, here’s the thing, Dj Jaffe:

Your definition of a “high functioning” person with a serious mental illness is someone voluntarily on their meds and not incarcerated or homeless.

So – what about someone who:

  • is actively having hallucinations and delusions, even on meds
  • can’t get housing assistance because every waiting list in the state is closed
  • is hospitalized every three months
  • has an IQ below 70 because the psychosis has eaten away at his brain
  • cannot be left alone and requires an aide 24/7
  • has attempted suicide in the past year
  • can’t hold down a job
  • can’t get Medicaid to cover all the medication he needs to keep him even remotely stable

But he’s voluntarily taking his meds, isn’t homeless, and isn’t incarcerated. Does he still count as someone you advocate for?

The difference between him and med non-compliance and incarceration is one day:

  • One day when his psychosis breaks farther through is meds than he can handle.
  • One day when he has to spend a few hours alone in an afternoon and his delusions lead him to suicide.
  • One day when his psychosis tells him his sister can read his thoughts.

It takes an unbelievable amount of energy to keep him on the side where you don’t feel the need to advocate for him. But the difference between persons with serious mental illness like my son and the persons with serious mental illness you advocate for may just be one solitary day.

  • The day my appendix bursts and I have to be hospitalized.
  • The day his father gets snowed in and can’t get him from school.
  • The day the pharmacy has to order his meds and they don’t arrive in time.
  • The day Clozaril stops working.

Think about that, please, when you consider who you are advocating for.

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One Week

Chrisa Hickey3 comments

What a week.

This week has been Mental Health Awareness Week, as I’m sure you know, and today is World Mental Health Day.  This year’s theme is Living with Schizophrenia, something we know a lot about.  living with schizophrenia

This week was also the week Kelli Stapleton was sentenced to ten to twenty-two years in prison for her attempt to end her and her daughter’s suffering.  There are a lot of opinions about what Kelli did.  A lot of them aren’t helpful, because this isn’t a cut and dry issue.  This is a road flare on the side of the highway of the lives of parents of children like Issy; parents of children with severe autism or severe mental illness that comes with very real and very dangerous behavioral problems.  If you’ve ever read Kelli’s blog, you know how difficult Issy’s behavioral issues are. All you need to do is read the last post Kelli wrote before the fateful day she lost all hope.  And why did she lose hope? Because a team of professionals decided to back a teacher that was upset that the INDIVIDUAL education plan that was crafted by experts that had just had Issy in residential treatment might need to be tweaked to fit what SHE – a teacher who had never taught Issy before – thought was better. They told Kelli that Issy was not welcome to attend the public school in her home district — at the school where Issy’s dad was the Principal, mind you — and they suggested Kelli consider homeschooling.  Forget how they felt about Kelli; this is a direct violation of federal IDEA law.
I hope that teacher and the administration that backed her feels they have blood on their hands.
It is so tiring, living this life, and there is no line of sight to resolution or reprieve.  Every day that I dare to think that we have crossed some threshold into normalcy and stability is met with the sharp slap of reality across the face that Tim’s illness is fluid and unpredictable.
 I remembefearr when Liza Long wrote, “I Am Adam Lanza’s Mother.”  I had really mixed feelings about it, particularly when she said her son terrifies her, even though I knew what Liza meant. Two of Tim’s three suicide attempts happened because Tim felt he was too evil to live; that his illness had turned him into a violent, dangerous monster.  We’ve spent a lot of time trying to undo that notion.  Tim is not evil; schizophrenia is. It’s not Tim that terrifies me; schizophrenia does. I feel secure in saying it always will.
There’s no easy answer to all of this.  There is plenty of blame to go around.  This week I also wrote a scathing, bitchy email to Tim’s caseworker and copied everyone whose email address I could find in departments from the County Department of Health to the State Secretary of Health because I’m tired of being the only person who is concerned about what happens to Tim when he turns twenty one and ages out of the child services system.  Not that we’ve gotten much help IN the child services system since he left residential treatment 16 months ago. We are back to never being able to leave Tim alone; one of us must be with him twenty-four hours a day. We are back to inpatient hospitalization every few months. We are back to broken doors in the hallway and not poking the bear. Is Tim more self-aware than before residential? Yes, most definitely. But I wouldn’t say he’s necessarily more stable. He’s definitely bigger and more dangerous when he’s not.
This weekDual is ending with repeated calls to Tim’s psychiatrist. Tim called me on the way home from school on Wednesday to tell me his thoughts are, “running through my head, and they’re bad; I can’t turn them off.” He wants to increase his Clozaril. He almost didn’t get into his car, but he knows his school closes at 2:30 and if he doesn’t get in his car, they will call the police — YEAH — even though they know full well that the only reason he doesn’t get into his car to come home is because he’s symptomatic and is struggling to cope. But heaven forbid the clinical staff at a therapeutic day school help him try and cope until a parent can drive the 30 miles to get there. It’s no wonder twenty percent of the adults in jail and thirty percent of those living on the street have schizophrenia. Even those trained to service this population treat them like criminals.
So I will continue on this hamster wheel of badgering and berating Tim’s caseworker. Tom will spend hours trying to get his psychiatrist on the phone. We will trade off babysitting our twenty-year-old man-child and repeatedly replace broken doors. I will stay on antidepressants and in therapy; Tom will live with his chronic insomnia and nightly scotch. The weeks will blend into months and eventually into years. I will write congressmen and talk on the radio to try and change our trajectory, and I will pray I never feel so desperate and alone that I end up living a week like the one Kelli Stapleton will be living for the next ten to twenty-two years.

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The Social Services Oxymoron

Chrisa Hickey3 comments
idiot

Why must I hand hold Tim’s case manager through everything?  The man has been a licensed clinical social worker employed by our county health department for at least 6 years, yet he acts as if he has never had a single client before Tim.

Two weeks ago I asked him about permanent supportive housing options for Tim when he turns 21 and his ICG grant runs out next July. He had no idea.  I gave him the names of four programs in our area I’d heard of.

He had someone in his office call them and ask, hypothetically, how they work.  HYPO-FUCKING-THETICALLY.  This isn’t hypothetical.  Tim needs an ACTUAL place to live. This dude is ACTUALLY his caseworker.

I swear, I’m starting to believe the reason the mental health system is so messed up is that the people running it all have a collective IQ smaller than my dress size.  And my dress size ain’t all that small.

My father always says, “illegitimi non carborundum,” which is Latin for, “don’t let the bastards get you down.” What’s Latin for, “don’t get mad, get even”?

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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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healthyplaceparenting

My posts over at HealthyPlace.com

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 HealthyPlace.com 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.

Sadness 

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.

Wonder 

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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