beginningsblessingschangesfamily

Renovation

Chrisa Hickey5 comments

I painted this stencil over the top of Tim’s closet when he was eleven years old. That was the year everything changed. Tim was officially diagnosed with schizophrenia. He attempted suicide. He had two inpatient hospitalizations. Tim has always loved Superman, and Tom has always loved REM, so this stencil was the perfect expression of what Tim loved, sung by a band his dad loved, and the sentiment I hoped he would remember.

Today, Tim and I are painting it over.

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Why Won’t Congress Act on Treatment Before Tragedy?

Chrisa Hickey1 comment

From the Washington Post article, on the incident this week of shots fired near the Capital:

Authorities identified the wounded suspect as Larry Russell Dawson, a minister from Tennessee. The 66-year-old Dawson previously was arrested in October in the District after he allegedly disrupted Congress by shouting that he was a “prophet of God.”

Yet, they won’t pass HR2646 out of committee, a bill that would have helped ensure this man was in treatment.

I…..I just can’t understand.

How many more people have to die? How many more prisons will we have to build to hold those that should be treated instead? When will politicians care?

They didn’t care after Tucson.

Or Virginia Tech.

Or Aurora.

Or Newtown.

They didn’t even care when one of their own was stabbed by his own child, hours after being refused a bed.

 

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advocacyautismbringchange2mind.orgfamilyfriendsguest postmental illnessparentingstigma

A Parent’s Perspective – Elizabeth Loan

Chrisa Hickey1 comment

Years ago I worked for a school who only served kids with moderate to severe disabilities, primarily Autism. Part of our training was a series of lectures from other health professionals, support service agencies and other assorted individuals who worked in the field. One of the trainings was titled, “A Parent’s Perspective.” It consisted of one brave, war weary mother explaining in great detail how she (any most of the other parents in our school) managed their daily lives.  Her lecture was by far my favorite. As trained professionals we cared for the children, but at the end of the day we got to go home. When the student reached the age of 21, they left…forever. Every year we got a three month break. 100% respite from the screaming, biting, clogged toilets and day glow orange Cheetos covered fingers.

But the parents? They were on call for life.

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advocacyamazing peoplejusticeUncategorized

Treatment Instead of Punishment

Chrisa Hickey1 comment

You may have read the story when it happened.  On May 22, 2015, J’Aire Lee, three years old, was found dead on a swing in Maryland. A neighbor called the police and said his mom, Romechia Simms, had been pushing him on the swing for “an unusually long period of time.” That time turned out to be two full days.  J’Aire’s cause of death was found to be hypothermia and dehydration. Romechia was taken to a psychiatric hospital. The death was ruled a homicide. Romechia’s mother, Vontasha Simms,  said her daughter had a history of schizophrenia and had been hospitalized twice in the past few years, but all her pleas to social services and other agencies to help her daughter we met with apologies or silence. Romechia had to face her son’s casket – and the knowledge that her actions caused his death – at his funeral. Then Romechia was charged with manslaughter and child abuse and incarcerated. She spent nearly three months in jail before her family could fight to have her bond lowered, then gather the funds to bail her out, just a few weeks before Christmas.

Two days ago, Romechia Simms stood in front of a judge and accepted a deal where she pled guilty to involuntary manslaughter in  J’Aire’s death, and required her to stay in treatment and take her medication, and be monitored for five years to ensure she is doing so.  She is living with her mother, Vontasha, who I know will ensure Romechia stays in treatment.

But Vontasha is doing more than caring for her daughter.  She is taking the pleas that fell on deaf ears before her grandson’s death to the Maryland State Capital to try and ensure that services are available to the families that need them, and to ensure that no other grandson has to die, and no other daughter has to live with the fact that her mental illness killed him.  It’s called J’Aire’s Law, and Vontasha posts on her Facebook page every morning about her meetings with county and state officials and her phone calls and petition drives.  Vontasha is one driven lady.vontasha

(image credit: Washington Post)

She’s driven to get enough psychiatric hospital beds in Maryland to meet the demand. She’s driven to get the law changed so that insurance companies can’t kick someone out of the hospital who is clearly unstable, but no longer an “imminent threat.” She’s driven to get family members of adults with mental illness access to their treatment plans and doctors.  I bet she can do it, too.  I hope her work rubs off at the National level, so we can get House Bill HR2646 passed.

Vontasha has a petition where supporters are signing and showing their support for J’Aire’s Law.  I’ve signed it.  I hope you will too. Because no one should have to endure what Vontasha, Romechia, and J’Aire have endured.  Not when treatment is so effective.

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Uncategorized

Refocus, Redesign

Chrisa Hickey

new

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.

 

Chrisa

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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.
timgraduation
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
depressionfail

Hypocrite

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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advocacyhealthevoices15

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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