Refocus, Redesign

Chrisa Hickey


Happy 2016!  It’s February, I know, but I’m finally ready to share my new and improved blog with you.  I hope you like the new design, with more images, video (coming soon!), and a fresher, cleaner, more positive look.  It matches my improved outlook on the blog, and on advocacy.  I’m tired of advocacy that screams about the dangers of the severely mentally ill for the shock value. I’m tired about being angry.  Time to talk about compassion, advocacy, and hope.

This year will bring weekly new content, and ways you can get involved.  I hope you like it.



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collegefuturepity party of one

Fall Fail

Chrisa Hickey5 comments

I dislike this time of year.  It’s not because summer is waning and, here in the Midwest at least, leaves are starting to fall from the trees. It’s not because summer hours at work are drawing to a close (not that I have much opportunity to use them anyway). It’s because I feel like such a beast being resentful of all of the pictures of my friends’ children going off to college.

It’s petty, I know.  But it’s a reminder of what will never happen for Tim, and it starts the cavalcade of mourn for what Tim will likely never be able to experience:

  • College
  • Marriage
  • Kids
  • Career
  • Independence
Tim “graduated” from high school in June. He could have gone to his life skills program another year, but frankly, there wasn’t much else they could teach him about taking the bus and grocery shopping.  It felt like we were warehousing him six hours a day.  Sure, Tom liked the break of not having his shadow with him all the time, but it was getting harder and harder to justify why  he had to go, particularly on those mornings when he really didn’t want to. So he got his certificate of completion in the mail, I ordered a graduation tassel for him on Amazon, and with no pomp or ceremony, his education was complete.
There’s no supportive housing available for Tim in the entire state of Illinois, so instead of shopping for what he will need for his dorm room, we are redecorating his bedroom, with the caveat that money won’t be spent until he can be “grown up” and prove he can keep it neat.  It’s taken all summer, but he’s finally doing fairly well in that department, so we’ve been scouring Craigslist for some furniture and pinning pictures of what he likes on Pinterest.
Instead of buying books, we are looking for animal shelters and dog kennels that will let Tim volunteer a few hours a week so he has a “job”.  I’ve written to several doggy daycare places in our area, and none have responded.  Most rescues don’t have a shelter so there’s no where for him to go to volunteer.  Even our county animal control doesn’t have a kennel.  So, for now, he’s helping his dad with yard work and chores around the house.
The good news is I found out that Tim is eligible for a card from the State that gives him free rides on all mass transit in our area.  So we’re not looking for a car that is reliable enough to take him around campus. Instead we’re applying for free ride passes from the CTA and Metra. He takes the train, by himself now, every few weeks down to the city to visit a friend he made at his life skills program.
My friends’ posts reek of the joy and promise of their children’s bright futures.  I can’t even give my son find a viable reason to get out of bed in the morning.  But I refuse to believe this is all there is for him.  Once my pity party is over, I will re channel my jealousy into finding a way for Tim to share his passion for art, animals, and music with the world in a way that enriches his life as well as those with whom he interacts.
But for right now, please bear with my frown when you share your precious photograph.
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Black Dog Depression


Chrisa Hickey5 comments

I thought I could go off of my meds.  I thought I was stronger than depression.  But the black dog is back and he’s sitting on my chest, daring me to leave him off leash.  I tried. I thought the exercise would be enough.  But five weeks off my meds and his teeth are bared and I keep thinking that ending it all would keep him from getting me.

I don’t know why admitting it to myself is so defeating. I’ve spent years giving others the lecture about getting treatment and that mental illness is nothing to be ashamed of.

So today, I go back to my shrink today and admit defeat.

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Patient Advocates and Strength in Numbers

Chrisa Hickey2 comments
I spent last weekend in the beautiful Hyatt Hotel in Jersey City, New Jersey, directly across the Hudson from Manhattan (check out that view!), at the HealtheVoices 2015.  This conference, sponsored by Janssen Pharmaceutical and Everyday Health brought together more than 60 of the best bloggers and patient activists from across the country to network and learn more about how online patient advocacy is impacting healthcare.

Before I recap, I should say that Janssen Pharmaceutical paid for my travel, hotel, and meal expenses to attend the conference, but all images, comments, and opinions are mine and are not sponsored.

We started Friday night with a reception and dinner to get to know each other.  There were bloggers and activists there representing cancer, diabetes, arthritis, autoimmune diseases, IBD and Crohn’s Disease, HIV, schizophrenia, and a few others.   I was excited to meet in person fellow mental health online advocates Dr. John Grohol of Psych Central, Melanie Jimenez of Understanding Schizophrenia, Ashley Smith of Overcoming Schizophrenia, and Lisa Lambert, of the Parent / Professional Advocacy League.

During dinner we heard a moving speech from Clare Martorana, Executive Vice President & General Manager, Consumer Health & Wellness at Everyday Health, about what drew her to a career in online heath and how special this first-of-its-kind conference was.  Her talk left me excited to get to the meat of the conference on Saturday.

Saturday was packed full of interesting speakers about diverse subjects.  First up was ZDoggMD, or Dr. Zubin Damania, who gave an amazing talk about how he gave up a career at Stanford Medical Center to test how concierge medicine could change patient outcomes and the cost of healthcare by using an integrated, pay-for-membership model much like a gym membership.  His test bed, Turntable Health, charges just $80 a month and includes not just urgent care, but preventative health, therapy, and even yoga! In his “spare” time, he creates dope YouTube videos like this one (“dope” is still a thing, right?).


Breakout Sessions

The day was really packed, with four different breakout sessions and a lunchtime speaker.

Session One – Compassion Fatigue

The first session discussed the fatigue that can come as part of being an online health advocate.  When you have an online as an advocate, you often get very close to people who reach out to you for help, support, and camaraderie.  Carrying the weight of everyone’s stories can be overwhelming, and requires another level of self-care that I know I am prone to forget.  The session was hosted by diabetes blogger Kerry Sparling and leukemia blogger Dr. Brian Koffman, and included several questions to ask ourselves and strategies to reduce compassion fatigue.  I came away from the session understanding I have some real decisions to make about other sites I have been blogging for. More on that to come.

Lunch Speaker – Trends in Health Technology

Over lunch, Susannah Fox of the Robert Wood Johnson Foundation shared with us some interesting facts on how technology is advancing healthcare and advocacy.  There was great discussion with the audience as well, and during her talk, I really came to realize how much leverage we have as advocates together – not just for each illness, but collectively as the voice of the patient in healthcare.  I think there’s something there that I will be exploring more over this year.

Session Two – Legal Issues in Blogging

After lunch we heard from Jimmy Nguyen, a lawyer and blogger himself on some of the legal pratfalls we need to avoid as bloggers.  I learned a lot about libel and I was glad to hear that I am on the right track when I use images for my blog – they are all either taken by me or have a Creative Commons license. I also learned that I may have a little beef with Janssen over their Mindstorm video on schizophrenia – I may be able to claim they are violating my trademark, since my blog as been around nearly two years longer than that video!

Session Three – Measuring Success

The third session featured Tim Cigelske of Marquette University and was all about how to use tools and services online to make posting easier, and measure the reach of our advocacy.  There was some twitter murmur from the attendees that if you’re measuring your success in terms of number of readers or followers, you might be in it for the wrong reasons, but it was interesting to learn how to see what my twitter followers are in to, and if I am reaching people who are interested in mental health (no newsflash – I am).

Session Four – Advocacy as a Career

The final session was hosted by Jenny Prokopy, a patient advocate herself, at ChronicBabe.com. Jenny gave us a view into how she turned her online advocacy into a full-time job. While that may work for some, it’s not something I’m interested in, but I appreciated her talk.
Saturday wrapped up with small group dinners.  I was assigned to a group about using social media for social good, but we spent our few hours over a fabulous meal getting to know each other better instead.  I had a fabulous and emotional conversation with Jennifer Campisano who writes Booby and the Beast about living with stage four metastatic breast cancer.  Jennifer was diagnosed at age 32 when her adorable son Quinn was just a few months old.  Five years later, she’s not only alive, she’s kickin’ cancer’s ass. I fell in love with her over risotto and red wine.
I left early Sunday morning newly energized about my blog and my mission to educate teachers and doctors about childhood onset serious mental illness, and support parents who are living this journey.  I can’t wait until HealtheVoices16 – I hope Janssen will have me again.  They put on an amazing conference, especially Caroline Pavis, who worked for months to bring this event together.
All of us – totally stole this pic from Tonic (https://twitter.com/TonicLC)


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courtshelpmorgan geyserschizophreniaslender manslenderman

Support for Morgan

Chrisa Hickey6 comments
Help us move Morgan Geyser's case to juvenile court.
Help us move Morgan Geyser’s case to juvenile court.

Many of you may have heard about an incident that happened in Wisconsin regarding two girls stabbing a third girl in the woods, due to a fear of a fictional character called “Slender Man”.
What you may not know is that one of the children being prosecuted for this crime is Morgan Geyser, a 12-year old girl diagnosed with childhood onset schizophrenia.
Last Friday, the judge presiding over this case determined that this child will be prosecuted for first degree attempted homicide in adult court.  As you can imagine, her family and lawyer don’t believe a child with a brain disorder should be prosecuted as an adult.
There will be a hearing in June before this judge to argue moving the case to juvenile court.  Her family feels that letters addressed to the court from other parents of children with mental illnesses – particularly schizophrenia, schizoaffective disorder, and bipolar disorder – that discuss the challenges and issues our children endure with these illnesses, may help convince the judge that the case belongs in juvenile court.
If you would like to write a letter on Morgan’s behalf, please address your letter to The Honorable Judge Michael O. Boren, the judge in this case.
Please be courteous, tell your story, and please try to keep your letter to two typed pages or less.
Morgan’s lawyer has advised her parents to collect the letters, so when your letter is complete, please mail it to:
Support for Morgan Geyser
PO Box 865
Waukesha, WI 53187-0865


If you have any questions, please email me and I  will get back to you as soon as possible.  Thank you.
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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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destabilizationdj jaffedr. fuller torreymental illness

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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bitch and whineICGValue Options

The Social Services Oxymoron

Chrisa Hickey3 comments

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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