TAKING A BREAK. THANK YOU FOR YOUR AMAZON REVIEWS by Dede Ranahan

Dear Sooner Than Tomorrow Readers and Writers:

I’m taking a break from my blog for the next 3 or 4 weeks. I must execute my mother’s small estate, attend to a celebration of her life, and reflect on her life and passing. I’ll also be speaking about Sooner Than Tomorrow at the NAMI Kentucky State Conference. I’m leaving you with some of the reviews readers have written on my Amazon book page. Thank you so much for these comments and recommendations. Reviews are among the best tools in a writer’s toolbox to garner more readers. I appreciate them more than you know.

Away from my blog but always thinking of you. You’re the most dedicated and courageous people on the planet. Have a good month.

P.S. If you’d like a copy of Grassroots 2020: A 5-Part Plan to Address Serious Mental Illness (SMI) to send to 2020 presidential candidates, and to local and state influencers, send me your email and I’ll forward the documents to you. You can also read the plan here in the archives on the right hand side: August 6, 2019, “Please Forward to Those in Your Sphere of Influence.” dede@soonerthantomorrow.com

SOONER THAN TOMORROW — A MOTHER’S DIARY ABOUT MENTAL ILLNESS, FAMILY, AND EVERYDAY LIFE

AMAZON REVIEWS

kayababy 5.0 out of 5 stars
Thank you for putting your experiences, into words
For so many of us, who have a child with these issues, our experiences have been similar, and we struggle to put them into words. I must say, this diary has been at times the "oh my God, I know exactly what she means" and a flood of tears, while other times a familiar feeling of smiles and happiness from that same place of recognition; it just helps to read it. I am so happy to have this book. It has a sort of sacredness about its story, especially with all of Pat's inputs, so that we get to hear from him, getting to know who he is as well through this excellent book his mother wrote. Thank you again Dede.

Christy B 5.0 out of 5 stars
Well written — heart felt — easy read — honest chronicle of a life ended too soon.
I don't know if "enjoyed" is the right word — very touched by this book. The writing is superb — the chapters short — easy to put down and pick up again. I was engrossed by the family dynamics — daughter, grandmother, mother, sister. The entries about the grandkids are delicious. Pat comes across as a highly intelligent, musically talented, funny guy. Loved his FB posts. A must read. Highly recommend.

Erin Eisner 5.0 out of 5 stars
So many reasons to read this great book!
I found this book interesting and important in so many ways! The author writes with an amazing sense of humor and compassionate insight about every thing from her 101 year old mom and grand-kids, to the ants invading her home. She brilliantly weaves in her late son’s poetry and Facebook posts, which gives true timely context, and reveals how she interpreted both monumental and mundane events she encountered in the year before her beloved son would unexpectedly and mysteriously pass away. While gut-wrenchingly tragic in the end, it has so many uplifting moments I found myself deeply engaged and inspired to learn more about many things. It made me want to read. It made me want to write. It made me want to live. It made me want to hold my two young babies a little tighter and pray they will be spared from mental illness, and if not that I will have the same patience, love and resolve the author had in doing all she could in a climate that makes nothing in this realm easy. To the author—thank you for sharing with the world your beautiful stories about your family and life in general, and thank you for your fight and efforts to improve mental health conditions and policies in this country, and for giving support to other families going through their own mental health challenges. I hope you have and will continue to write more not only for your own peace, but because your words and stories must continue to be shared and heard. You don’t have to have a close family member with mental illness to benefit and appreciate this book— if you are a human on this planet who can read English I highly recommend you read Sooner Than Tomorrow because it has much in it for everyone to ponder.

Paula Quertermous 5.0 out of 5 stars
Dede Ranahan shares a glimpse families endure while trying to get mental health help in time
This book has moved me deeply. Dede Ranahan captures the slippery chasm family members with serious mental illness try to navigate to have some quality of life — and in spite of lack of enough good services. Dede, your writing mesmerized me!! I can relate so much as the mother of an adult daughter with SMI. Every day can contain an element giving you a surge of motherly hope — or a crushing incident that spikes to fear for your child. The exhaustion from living in long term doubt requires support. This book is a gem of information!

L. Turley 5.0 out of 5 stars
I highly recommend this book.
I read books these days in short spurts, often just a few pages at a time, especially when the material hits me in a way that I need to stop and process before continuing. This book is like that for me. It is both a daily journal of everyday events and yet, within those events there is a deep, insightful look at a life that is shared with us for a purpose. I had been waiting until I finished this book to write a review, but it may take me awhile to finish, as I sit and savor these snapshots glimpses into the lives of the individuals within. Dede shares her life and her innermost thoughts in a down-to-earth way as she allows us to walk with her through the journey of her son's mental illness, and reminds us that we are not alone, but we walk together. For those who share this journey and share her prayer for change to come "Sooner Than Tomorrow” and for those who are fortunate enough not to share the journey, but who wish to understand, I highly recommend this book.

I WANT TO HARNESS EVERY LITTLE PIECE OF HAPPINESS by Anonymous

I had a powerful phone conversation with my SMI son today. We spoke about a thousand things but, most importantly, he said, “Mom, I think you and I needed separation.”

Before his first episode, my son was functioning optimally and had a high paying position in San Francisco. Then everything crumbled. He had a serious injury that almost took his life and we were sent into a tail spin as a family. I had my heels dug in because I was losing the son I knew. I was riddled with grief. It was his radiance that I missed so much. He was known for his kindness and big hugs.

As time has moved along, we’ve endured some very scary and difficult experiences. We’re finally admitting that that the son we once had no longer exists. He doesn’t look like he used to. His eyes are no longer relaxed and kind. It’s weird how his looks have changed so drastically. People are mostly afraid of him.

Now, the one in my son’s place is someone we know and can love. He’s on his own in Denver and on a warrior path. I don’t always understand it, but I finally embrace it. I dread him being 50 and homeless when I’m gone, but I cherish that we can have connection in our new normal. The emotional separation has been healthy for me.

Today, I’m refocused on my younger son. He’s a doctor and has a son of his own whom I just took care of for eight days. We’re lucky that he’s a doctor who understands medications. He has a skill set that most of our family doesn’t have. I am so grateful.

Please don’t take my post as simplifying the gravity of our situations. We are all one episode away from devastation, but I want to harness every little piece of happiness and connection I can.

NO STORIES THIS WEEK by Dede Ranahan

My 101 year-old mother, Evelyn or GG, is in the hospital and that’s where I’ve been every day for a week. My family and I don’t want her to be alone when she passes. She doesn’t want to go :-( She’s always been a fighter (stubborn might be another word :-) We don’t want her to leave either, but her quality of life is deteriorating quickly. Please hold good thoughts for her.

My mother, Evelyn, and me 1945. I love you, Mom. It’s okay to go. Pat’s waiting for you. He wants to give you a hug.

HAPPY PIC

Steps to somewhere.

Hope you have a good weekend everybody!

MENTAL HEALTH ADVOCATES PUSH REFORMS by Gary Warth

San Diego Union Tribune 8/7/19

Coalition seeks support for new laws and policies from presidential candidates

By Gary Warth

POWAY

A grassroots coalition of nationwide and local mental health advocates is asking all presidential candidates to support reforms in laws and policies that they say will make it easier for people to get treatment and for families to help their troubled loved one.

“The first thing you need to do is educate the candidates, because most people don’t understand serious mental illness,” said Poway resident Linda Mimms, a National Alliance on Mental Illness-trained advocate who helped craft a five-point platform that is being presented to candidates.

Mimms has called for reforms to mental illness laws for the past several years, arguing that parents of adults with mental problems should have more rights and courts should have more flexibility to mandate treatment.

Among the proposals in the platform are a call to create a cabinet position exclusively focused on serious mental illness and changes to laws that would ensure mental health professionals are permitted to share and receive diagnostic information with and from parents or caregivers.

Laws about mental illnesses became part of a national discussion this past week after mass shootings in Texas and Ohio. Mimms said she was encouraged when President Trump called for reforming mental health laws to better identify and even involuntarily confine people who may commit violent acts while also ensuring more patients receive early treatment.

She cringed, however, when he referred to “mentally ill monsters,” and noted that a small percent of mass shooters had been diagnosed with mental problems.

There are connections, however. A Wall Street Journal editorial this week cited studies between 2000 and 2015 that suggest a third of mass killers had untreated severe mental illness, while an FBI study found 40 percent had received a psychiatric diagnosis, and 70 percent had other mental health issues.

The platform was drafted after a monthlong online discussion among about 70 people who were not associated with any one group and were from 30 states. Mimms, who has a degree in public policy, wrote the final version that was adopted by organizer Dede Ranahan, author of “Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life.”

Other local advocates who worked on the platform were Katherine Smith-Brooks and Bob Brooks of Carlsbad and Mary Sheldon of Poway.

The platform’s first topic calls for reclassifying serious mental illness from a behavioral condition to a neurological medical condition, which will unlock more research funding and help in insurance reimbursement, according to the advocates. It also calls for a cabinet position on serious mental illness and the inclusion of schizophrenia in a Centers for Disease Control program that collects data on risk factors of neurological conditions.

The second topic calls for reforming the Health Insurance Portability and Accountability Act, or HIPAA, which the platform writers said creates barriers that shut out parents and caregivers from the treatment of family members.

The third calls for the repeal of a rule that prohibits Medicaid payments to facilities with more than 16 hospital psychiatric beds for people ages 21-65, which the advocates argue has created a national shortage of treatment options.

The fourth platform topic calls for long-term care of people with severe mental illness, including early detection and follow-up treatments after release. The platform calls for federal incentives to states that address a full array of services and supportive housing care.

The final topic is about decriminalizing serious mental illness and includes reforms that can lead to more involuntary treatment, which Mimms said was her personal top priority.

“Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed,” the platforms reads. Specifically, it calls for redefining criteria for involuntary commitment with terms that are objective and based on scientific, medical needs.

A letter that will be sent to all candidates asks each to address the topics in their campaign appearances and debates, Mimms said. 

gary.warth@sduniontribune.com

Click here to read the article in the San Diego Union Tribune 8/7/19 about our 5 part plan for SMI.

NOTE FROM DEDE: If it takes a village to raise a child, it takes a country to help a child with SMI. This coalition is from across our country. Let's keep the momentum going. As Linda has done, contact your local media outlets and send them our plan. Unfortunately, our effort is manifesting in a time of wrenching, national grief. Fortunately, our plan is ready to go. If you'd like a copy of the plan, the cover letter, and an addendum of additional ideas, post your email address in the comments section below, or send it to me at dede@soonerthantomorrow.com. Then forward the documents to people in your sphere of influence. Thanks to everyone participating.

http://www.bit.ly/soonerthantomorrow

Yamileth Lopez holds a photo of her deceased friend Javier Amir Rodriguez at a makeshift memorial for victims in El Paso, Texas. (Mario Tama Getty Images)

PLEASE FORWARD TO THOSE IN YOUR SPHERE OF INFLUENCE by Dede Ranahan

I believe that serious mental illness (SMI) should not be a footnote to other issues, i.e., gun violence, and that it needs to be recognized and addressed as its own issue. I'm reposting the 5 part plan developed by grassroots advocates from across the country. It's not comprehensive but it's a beginning.

Before SMI becomes the victim — responsible for gun violence — and before politicians use it more and more as a scapegoat, please join us. Send copies of this plan to local, state and federal representatives. They need to be educated. They need to step up and help 10 million SMI individuals and families who fight every day for life and death services.

Post your email in the comments section below, or send it to me at dede@soonerthantomorrow.com. I'll send you the cover letter, plan, and additional ideas so you can forward them to those within your sphere of influence.

A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)

FOR ALL 2020 PRESIDENTIAL CANDIDATES

PLEASE ADDRESS THESE TOPICS IN YOUR CAMPAIGN APPEARANCES AND DEBATES

1. RECLASSIFY SERIOUS MENTAL ILLNESS (SMI)) FROM A BEHAVIORAL CONDITION TO WHAT IT IS, A NEUROLOGICAL MEDICAL CONDITION WHY RECLASSIFICATION IS IMPORTANT
Reclassification will unlock more research funding and help eliminate discrimination in treatment, insurance
reimbursement, and the perception of SMI as “behavioral” condition. SMI is a human rights issue. NIMH ranks
SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.
PRESIDENTIAL ACTION
* Create a cabinet position exclusively focused on SMI.
* Push for Congressional appropriations to include schizophrenia in a CDC program that collects data on the
prevalence and risk factors of neurological conditions in the US population.

2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)
WHY HIPAA REFORM IS IMPORTANT
Overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones, resulting in important life-saving medical information gaps. By eliminating this barrier, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death.
PRESIDENTIAL ACTION
* Work with legislators to change HIPAA law to ensure mental health professionals are legally permitted to share and receive critical diagnostic criteria and treatment information with/from parents or caregivers of SMI.

3. REPEAL MEDICAID’S INSTITUTES FOR MENTAL DISEASE EXCLUSION (IMD)
WHY IMD REPEAL IS IMPORTANT
IMD repeal will increase the availability of psychiatric inpatient beds. The IMD exclusion is not only discriminatory of those suffering from neurological brain disorders, it is also a leading cause of our national psychiatric hospital bed shortage. It prohibits Medicaid payments to states for those receiving psychiatric care in a facility with more than 16 beds who are 21-65, the age group with the most SMI.
PRESIDENTIAL ACTION
* Work with legislators to repeal the IMD exclusion.

4. PROVIDE A FULL CONTINUUM OF CARE
WHY A FULL CONTINUUM OF CARE IS IMPORTANT
A continuum of care ensures that SMI patients receive early intervention at all stages of their illnesses, longterm care when needed, and follow-up treatment (medications and therapies) when they’re released. It reduces visits to jails, ER’s and hospitals, homelessness, and morgues. A continuum of care provides life-time management.
PRESIDENTIAL ACTION
* Create federal incentives to states which are addressing a full array of inpatient, outpatient, and supportive
housing care.

5. DECRIMINALIZE SERIOUS MENTAL ILLNESS (SMI)
WHY DECRIMINALIZATION OF SMI IS IMPORTANT
People suffering from other neurological conditions like Alzheimer’s and dementia can get treatment promptly without being kicked out of their homes to wander the streets until they are arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed. This is pure and simple discrimination with the disastrous results we see in our country today — homelessness, incarceration, the disintegration of families, and death.
PRESIDENTIAL ACTION
* Work with legislators to change “must be a danger to self or others” criteria.
* Work with legislators to change involuntary commitment criteria, alleviating the subjective nature of “gravely
disabled” and redefining it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome.

HAPPY PIC

Water lillies at sunset.

Hope you have a good weekend everybody!

OUR SON'S PREVENTABLE DEATH by Pat Wood Sterling

On March 22, 2019, our son, Brian, took his own life. My husband and I believe that Brian’s suicide could have been prevented if the first group of medical responders and sheriff’s officers, who we called, had acted appropriately.

What follows is a reconstruction of events to the best of our recollection, and a question as to why officers, who responded to our 911 call, didn’t exercise their authority to use an Emergency Custody Order ( An ECO allows a person to be taken to a hospital against their will in Virginia) to assist our son who didn’t have the clarity of thought to act in his own interest.

As Brian became increasingly delusional and paranoid over a period of months, he called the Loudoun sheriff non-emergency number several times. Brian had called them when he lived in an apartment in Leesburg and continued to do so when he moved to our house in Sterling. Officers had come to our house in Sterling to investigate imagined break-ins and “suspicious people” loitering around the house several times in the few weeks prior to Brian’s suicide.

Deputy P. Brick (#3198) responded to these calls and became acquainted with Brian and his mental health status. Because Brian didn’t present himself as being a danger to himself or others during these calls, Deputy Brick told us, “I can’t take Brian in for a mental health evaluation.” We agreed with him at that time.

The last time Brian asked officers to come to the house, Deputy Brick suggested that we try to get an ECO ourselves from the magistrate on the grounds of “inability to care for self.” Please note, Brian had been hospitalized in Loudoun County several times over a 7 year period and had a history of being taken in by the sheriff’s office through ECOs issued on our behalf by the magistrate. He’d also been taken for mental health evaluations several times directly by the sheriff’s officers because of complaints by neighbors. In one case, because of a domestic assault. We’d asked, many times, for the Loudoun County Community Service Board to give Brian Assisted Outpatient Treatment (AOT). They always refused. The basis of their refusal was that Brian had private insurance which we were able to obtain for him through his father’s job with the State Department and because he’d become ill before the age of 22.

On March 22, we were occupied most of the day in supervising the upgrading of our home security system. Because of Brian’s paranoia, we thought it might help him feel more secure if we activated an old security system that already existed in the house when we purchased it. We had a technician from the security company in our house from 11:30 AM until 5:00 PM.

We were aware that our son wasn’t feeling well and had been vomiting, but we didn’t really start paying attention to his condition until after the technician left at 5:00 PM. Our son had locked himself into an upstairs bathroom and had the water turned on. We assume he hoped the sound of water would camouflage the sound of vomiting. We were able to open the door with a screw driver and found our son crouched on the bathroom floor vomiting into the toilet. His eyes were glazed, and he could barely stand up to walk to the adjoining bedroom. He continued to vomit into a bucket as he sat on the bed.

When we saw his condition, we thought he’d perhaps taken a street drug or overdosed on one of his psychiatric medications. We asked him and he denied it. He said, “I have food poisoning. I’ll be fine.” We could tell it wasn’t food poisoning. Brian’s voice was high pitched and abnormal, and his eyes and the ability to walk weren’t normal. His vomit was black and looked as though it had blood in it.

We decided to call 911. When the responders to our 911 call arrived, it must have been about 5:45-6:00 PM. Two sheriff’s officers accompanied the medical responders. Our recollection is that there were 3 or 4 medical responders. We learned from one of the sheriff’s officers that Officer Brick was not available because he was sick that night. We were upstairs with my son so we didn’t see what kind of vehicle the medical responders arrived in. We don’t know if it was an ambulance or fire truck.

An older man seemed to be in charge of the medical personnel. He asked my son if he could take his vital signs and my son refused. He asked if they could take him to the emergency room and my son refused. The two sheriff’s officers noted to each other that my son had a red mark on his neck where he’d pulled off a chain that he always wore. The older medical person informed us that he could do nothing since my son was refusing treatment. He told me, “Try to persuade your son to be hospitalized.” I was also unsuccessful.

It was clear to me that my son was very ill and delusional. I don’t believe that the medical people ever examined the contents of the bucket my son continued to vomit into in their presence. Shortly thereafter, they all left. They were probably in the house about 15 minutes total.

To us, at least, it was obvious that Brian wasn’t in a mental state where he could make an informed decision about his own health. He was beyond understanding what anyone was saying to him or urging him to do. The question of whether he had taken some self-harming drug was never addressed. The officers certainly must have been aware of his mental health record from past visits. The red mark on his neck that indicated self-harming behavior was ignored.

We know that police and sheriff’s officers are trained to take people in distress into custody and we can’t understand why this was not, at least, considered. We pleaded with them, “Please take Brian to a hospital for medical treatment.” They didn’t exercise their authority to issue an ECO. With hindsight, we think our son was already well along the road to endeavoring to end his life.

Our questions are:
-Did the officers not understand their authority to act in a crisis?
-Had the officers completed the training that is required for this type of situation?
-Did they consider one or more of the three criteria (danger to self, danger to others, inability to care for self) that allows them to act without the consent of an adult?

After the medical responders and the officers left, my husband and I debated about what to do. My husband left the house about 6:30 PM to go to the magistrate in Leesburg to try to obtain an ECO . While my husband raced to Leesburg, my son stumbled down the stairs into our office where I was sitting. He sat down and, a few minutes later, had a convulsion. His body went rigid and his eyes rolled back. He’d never had a convulsion before.

I grabbed my cell phone and called 911 again. My son walked into the living room and fell onto the living room couch continuing to vomit into a bucket. He had another massive convulsion. He ended up with his head on the living room floor and his feet pointed at the ceiling. He had no control over his body. When he was able to sit up again. I was still on the phone with 911. I saw a knife poking out from one of his pants pockets. I asked him, “What is that knife was for?”

Brian started having another convulsion. As his arms and body began to get rigid again, he pulled the knife out of his pocket and slit his throat. I told the 911 person what had happened and begged her to get someone to the house quickly. She told me, “Get towels to try to compress the wound on his throat.” I ran to the kitchen to get towels but my son pushed me away when I returned to him. Running back to get more towels, I turned around and found Brian standing in the kitchen looking through the trash can. I can only guess that he was looking for the knife.

The 911 lady asked me, “Are there any weapons in the house?” I replied, “No, only kitchen knives.” When I said that, my son’s attention went to the drawer where we keep the kitchen knives and he started moving toward it. This whole time he was bleeding profusely from the wound in his neck. 

I stood in front of the drawer. Brian was getting weak and couldn’t push me aside. An officer burst through the kitchen door from the garage and started wrestling with my son trying to handcuff him. My son struggled against being handcuffed and asked the officer, “Why are you doing this?" The officer saw the blood pouring from the gaping wound on my son’s neck. He replied, “I’m trying to save your life.”

After several minutes, the officer was able to handcuff Brian. He threw him down on the dining room floor. At that point, medical personnel came into the house. It was too late since my son had lost so much blood. Medical personnel worked on him for thirty minutes with no success. We believe he died on the dining room floor.

Brian was taken to Reston Hospital in an ambulance. My husband arrived back from Leesburg and we rushed to the hospital where we sat in a waiting room for 45 minutes. A doctor came out and told us, “We weren’t able to save Brian. He lost too much blood and we weren’t able to get a heart beat.”

We so wish that the first call to 911 had resulted in getting my son medical treatment and then mental health treatment. The medical examiner’s office stated on the death certificate that the “Immediate cause of death is pending.” We’ve asked for, but haven’t received, the results of any toxicology screening. With the constant vomiting and the convulsions, it’s possible that some drug or overdose of medication was involved.

We hope, in the future, the mental health of the ill person and his/her ability to make informed and rational decisions be taken into consideration by medical responders, and that they defer to sheriff’s officers regarding a possible ECO. The possibility of an attempt at suicide must also be taken into serious account when deciding whether or not to leave the scene. An opportunity to save my son’s life was missed and resulted, in our opinion, in a tragedy that could have been avoided. Our family is devastated by Brian’s loss. He was 38 years old.

We hope our story will prevent this kind of heart-breaking outcome for another family.

Brian’s mom and dad - Pat & Jerry

WE'RE THINKING INCORRECTLY ABOUT SERIOUS MENTAL ILLNESS by Mary Rossell

Eight-hundred-ninety-seven days. That’s how many days it’s been since my son Kevin died. I remember when I counted the number of days after his birth, then transitioned to months and then to years. Now, when asked by others about his death, I give the socially appropriate answer of nearly three years, but I still think 897 days.

Kevin suffered from a serious mental illness. I’m not certain which one as he was given at least two dozen diagnoses during the years of his treatment, often two to three diagnoses at the same time. Even while we cycled through different diagnoses, we assured ourselves that he had good odds to do well. We were pro-active with early intervention. How naive we were.

Through the years, we were often told to wait and watch. The child psychiatrist said, “He’s okay, just a bit anxious. A smaller school should help.” The prodromal psychiatric assessment clinic said his symptoms were “not clearly psychotic, although he seems to have some odd beliefs. His presentation is consistent with an autism spectrum disorder.”

At the later stage of his illness, one of his doctors candidly said to me, “Diagnosis is just a label and doesn’t really help. What we really do is treat symptoms.” From then on, I silently called his team of doctors the “Symptom Chasers.” With the absence of biological markers, all practitioners can do is interview, watch, and categorize based on what they observe. And so, we continued to wait as Kevin continued to be watched.

As months passed, Kevin didn’t respond to the usual treatment protocol of pharmacological combinations, behavioral therapy, and daily structure of activities. One day, when he didn’t want to go out for his daily routine, he asked me, “Would you make a person, with a compound leg fracture, run laps around a track field before you’d fix his leg? No, you wouldn’t. So why are you making me run laps when you haven’t yet treated my disease?” With tears in my eyes I said, “I’m sorry, this is all we have.”

We continued to search for treatment to help him. Over and over, we told ourselves the odds remained in our favor. We had access to the “best” medical care, and we had compliance from our child. We just hadn’t found the right treatment yet. We traveled to San Francisco, to New York City, and, finally, to Boston. In the end, all we really had to offer Kevin was medication, the effectiveness of which has not progressed since 1959, endless talk therapy, and mind-numbing structure.

After 333 days of intensive treatment with a psychiatric hospital in the Boston area, Kevin died in a residential home associated with the hospital. Kevin was 20 years old.

After Kevin’s death, one of his doctors compared his illness to that of end-stage cancer. Perhaps he said it to help make sense of what was otherwise a senseless illness and horrifying death. But he was wrong. Kevin’s illness and death were nothing like cancer. You can accurately diagnose cancer. You can see if treatment is making it better or worse. And you can explain how the patient died. None of this happened for Kevin.

When some time had passed after Kevin’s death, I began engagement with the mental health advocacy community. Each time, I found myself with immense respect and admiration for the tireless commitment of the parents who care for their children with serious mental illness. But I was also disheartened by the fact that, as we enter the third decade of the twenty-first century, the prominent advocacy work for the seriously mentally ill is about treating this community as patients rather than inmates.

How sad that those, who are most vulnerable among us, cannot be treated with basic dignity by our society. While we fight to make progress in releasing people from prisons and placing them in hospitals, we cannot forget that many, if not most, will remain incarcerated within the confines of their serious mental illnesses until we make real progress in diagnosis, prognosis, and treatment.

In one of Kevin’s last emails to his doctors he said, “If you want to understand my experience better, start by thinking about the ways you are thinking incorrectly about it.” There remains a lot for which we are thinking incorrectly when it comes to serious mental illness.

HAPPY PIC

Photo credit: Dede Ranahan

They’re first cousins. Do you see the resemblance?

Hope you have a good weekend everybody!