Sweet sixteen wasn’t so sweet for me. As soon as I celebrated that birthday and started a new private school the same week, a dark cloud gathered over my mind. Instead of the public school hustle through hallways and crowds of students, the fewer classmates and feelings of being observed revealed a psychological distress I’d never known before. Soon, due to the switch in educational environments and a predisposed genetic case of bipolar disorder, my paradigm shifted and my mood dropped. I entered into a clinical depression that could not be prayed away.
Classmates and teachers with good intentions misread my quietness for my introverted personality. Maintaining my grades became a struggle, and the dark cloud turned into a storm. Hate and self-loathing became a daily battle within myself. I turned my back on God. Surely, death would be better.
By this point, I was desperate to feel anything but apathy and despair. I contemplated jumping out of the car on the highway, stabbing myself, or taking a bottle of Tylenol. The desires to make new friends, excel at academics, and tackle my amateur soccer skills waned. My parents noticed my change in demeanor and took me to a Christian psychiatrist by the new calendar year.
The psychiatrist prescribed an anti-depressant. That would have helped had I had a case of clinical depression. Unfortunately, unbeknownst to all of us, I had bipolar depression. Which meant that an anti-depressant alone would only serve to send me into a manic state of mind. With bipolar disorder, you typically need an antidepressant and a mood stabilizer or antipsychotic. The mood stabilizer would have helped me from getting too high toward the other “pole” of bipolar: mania. In my case, which is less common, I went into psychosis, a state of a break from reality where symptoms of delusions, hallucinations and more abnormal behaviors present themselves.
My speculation is that the psychiatrist switched my prescription a little less than two weeks after starting the antidepressant, after I complained of rapid weight gain. This “cold turkey” change messed with my mind’s equilibrium, and I launched into a state of psychosis where I heard voices, became paranoid, and exhibited unreasonable outbursts in school. Shortly thereafter, my parents admitted me to the juvenile psychiatric department of a local hospital to be monitored for the next three weeks.
Behind the secured doors of the unit, I found a crew of competent and compassionate caregivers. I also turned back to God. In fact, clinging to Jesus amid strangers and other youngsters battling their own internal struggles was a test of faith. Being able to lean on the nurses in the shadows of the valley of paranoia and reciting the Twenty-third Psalm with them brought me unspeakable comfort. From the nurses to the techs, the level of care I received was evident in the way they treated me and helped my parents to guide me through the hospitalization. Although my symptoms persisted, and finding the right medication was a trial-and-error process, I was in the best place to find a solution to my fractured mind.
After discharge, I was sent to an outpatient program during the remainder of the school year and summer. My teachers graciously assisted me in completing my schoolwork and passing the grade. I returned to the public school the following fall and finished my high school career at the public high school. By getting back to a routine, I returned to the creative, introverted, driven person I had previously been. My mental health improved as time went on, as long as I took my medicine and kept my psychiatrist and therapist appointments. I maintained a fully functioning level of life and was able to graduate high school, enter and complete college, meet and marry my husband, and lead a fully functioning, abundant life.
None of us are immune to the effects of mental illness, whether it is diagnosed in someone we know personally or ourselves. It can be a scary place to travel through and the journey can be long and dark. My psychotropic medications have continued to help keep my brain chemicals balanced, and more than that, I have the strength in our Lord who makes all this possible.
If you or someone you know are experiencing extreme changes in normal behaviors to prevent you from healthy functioning in life, reach out to a mental health professional. And if you or someone you know are in crisis, call 9-1-1. To reach the National Suicide Prevention Lifeline, call 1-800-273-8255, or text 741741 for a text-based method.
The information included in this article is not intended to treat, diagnose, or medically advise.
About the author: Katie R. Dale has authored But Deliver Me from Crazy: A Memoir, on her experiences through the psych wards into recovery, and blogs regularly regarding her reconciliation of her Christian faith and mental illness on KatieRDale.com. She’s on social media @KatieRDale and when she isn’t caring for her daughter at home, she is out training for a half marathon or 5k with her running friends. She resides in Eglin AFB, Florida with her hero in uniform, Chris, and daughter Kylie Grace.
A NEW PAGE ON THE BLOG - PEN PALS by Dede Ranahan
A NEW PAGE ON THE BLOG
PEN PALS
With the corona virus pandemic, visiting rules have been changed in most US prisons. Many of our SMI family members are in prison and often in solitary confinement. We’re all experiencing various levels of solitary confinement as we stay home — with one or two others or by ourselves — in response to COVID-19 directives. We’re getting a feel for the stresses of being in isolation. Can you imagine being seriously mentally ill with schizophrenia or bipolar disorder and being in solitary confinement with family visiting sessions cancelled? No. Neither can I.
Several of you have asked if there might be a way to set up correspondence with SMI prisoners (in and out of solitary) to let them know they’ve not been forgotten. I’m adding this page to the blog as a place to post the names/addresses of prisoners who would welcome news and connection to the outside world. In other words, they’d love to receive letters from you.
Please send me a brief description of a SMI prisoner you know who would like to receive mail. A photo of them would be great if you have it. I’ll begin this list with Travis Christian whom I’ve been visiting and writing about on the blog. Send your information to me at dede@soonerthantomorrow.com. Thank you so much.
Travis Christian has been in prison for over seven years for a crime he committed while he was in a psychotic state. You can read my stories about Travis on the blog. Check the archives on the right. Travis was due to be released this year, but now, he’s in solitary confinement indefinitely for attacking his cellie while in another delusional state. The DA recently told Travis that he’s bringing charges against him for attempted murder. Travis is potentially facing many more years in prison. Travis’s mail address: Travis Christian, BB8099, C-12-242, Mule Creek State Prison, PO Box 409060, Ione, CA 95640.
If you could add my son Dillon to your list for mail, that would be great. I'm very worried about him. He’s currently in isolation in Butner, NC. He has schizophrenia and is in isolation most of the time because he either won't stay on meds or they don't have him on the right medication. He was doing so well when he first arrived but we don't know what has happened and I can't get anyone to tell me. He can't even call us for a month. He was at a medical center in Rochester last year and spent four months in isolation there unmedicated. Then in Oregon for seven months and three of those in isolation. He’s been moved numerous times because federal prisons don't know how to take care of the mentally ill. I know he needs mail and positive, encouraging words. Dillon’s mail address: Dillon McCandless 19101023, FCI Butner Medium 1, P.O. Box 1000, Butner, NC 27509
My son, Mason, is 28. He’s been ill with schizophrenia since 2009. He just made it through high school to get his diploma. He used to be a math and science whiz, loved playing online computer games, and made friends easily. He was also great at sports. Any sport you put him in he could do, and he loved it. For a minute there, he was in a good treatment program. He lived at home, was able to attend community college, made friends, had a girlfriend, and started taking piano lessons and practicing. However, he's been in pretty bad shape since 2012. He’s had in multiple arrests, failed attempts at treatment, been homeless, and spent significant time in the largest mental hospital in the world — Twin Towers Los Angeles County jail for men. He's there now and we're hoping to get him into a locked IMD but chances are he'll have to be held at the county hospital until a bed opens up. Mason’s mail address: Mason Lantern, #5854725, Terminal Annex, PO Box 86164, Los Angeles, CA 90086-0164.
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.
I SEE CHANGE COMING by Channin Henry Williams
Growing up in a small middle-class town in Washington State, I had very little knowledge or understanding about mental illness, our criminal justice system, and the homeless or how these issues were connected. It wasn’t until I was an adult, living in the Houston area, that my eyes were opened to the larger problem. It was not until my own personal experience left me with no doubt that the American mental health care system is insufficient. I believe the inadequate and flawed mental health system plays a large part in why our loved ones end up living on the streets or living in our prisons.
Not long ago, I ran into an old friend, Linda, who lives in a high-rise apartment in downtown Houston. We hadn’t talked in years. Because the topic of my daughter came up, Linda told me about her mornings and walking her dogs at 5:30 am.
Linda talks passionately about the homeless people she chats with. She describes a man who carries a cardboard box that is used for his bed. Many tell Linda about their loved ones but their stories are incoherent. She makes healthy muffins for them because she doesn’t know when they’ll get their next meal. It breaks her heart that she can give them walking directions to a hot meal, warm clothes, and a few other services, but nothing for their mental health needs. Many nights she watches, from her window, as the police escort a homeless person away in a police car.
Those strangers, whom society has written off, belong to someone. What if I lose my own daughter to her mental madness? The optimism in me wants to deny that could happen, but the laws and the mental health system I have lived with remind me it’s a real possibility. Would my daughter be harmed or feared by those rushing past her? Would there be someone kind enough to smile at her and feed her a muffin? It gives a bit of comfort knowing there are more Lindas out there who value all human life. We don’t hear about them because they don’t seek recognition.
My daughter, Raven, is an amazing person whose early childhood was anything but easy. She was removed from her biological family and two foster homes, and was admitted to her first psychiatric hospital before her 4th birthday. She was then placed in my foster home. When the parental rights were terminated, I adopted her. Shortly after, I got married and she was adopted by my husband and we became a family. She brought so much joy to our lives even when things were difficult.
Raven received a bipolar diagnosis before her 4th birthday, but I didn’t believe it. We treated her behaviors as symptoms of post traumatic stress disorder, ADHD, obsessive compulsive disorder and reactive attachment disorder. She went to therapy and family sessions over the years because of the difficulty of raising a child with so many problematic behaviors. Even so, Raven was a cheerful child, who wanted to behave and make the people in her life proud of her. Her quirky personality helped her friends overlook her frequent outbursts, but the peers, who couldn’t understand her, were often unkind. When I saw small improvements in her daily life, I believed, one day, all the past abuse would be behind us.
When Raven was 12, one single event seemed to “awaken” mental illness. Our life was suddenly spinning out of control. During the next nine months she was hospitalized eight times. She began experiencing deep depression which led to manic episodes. Her bipolar diagnosis was confirmed but later changed to schizoaffective disorder. It seemed likely that borderline personality disorder would also be added. Each time the doctors changed her medications and sent her home new symptoms appeared. She began expressing delusional thoughts and her fantasy world was mixed with what was real. When her hallucinations and obsessions became homicidal, we were advised to get her into long-term treatment.
Then came the most perplexing Medicaid law that did nothing but add to the chaos. In my state, Medicaid wouldn’t cover long-term treatment for mental illness unless parents gave up guardianship to the state. Caseworkers who specialized in child abuse (CPS) would determine my child’s medical care. We first turned to a local post-adoption agency for support and funding. When their funding ended, and it was clear my daughter couldn’t return home, we had no choice but to give up guardianship.
CPS agreed to keep Raven in the first residential treatment center (RTC). She lived there for a year, but wasn’t getting better. CPS recommended that she go to a long-term psychiatric hospital. I was told, “Your daughter’s prognosis looks bleak.” While it was hard to hear, it was what I needed to keep me grounded. I knew that it was okay for Raven not to achieve all the dreams I had for her. I was proud of her for working hard and not hating me for sending her away.
The state workers disregarded the recommendation of Raven’s medical team and sent her to another RTC. This was a deplorable facility that specialized in treating teen girls who’d been in trouble with the law, not psychiatric patients. The treatment of Raven and me was anything but nice. Raven lasted about 16 days before she tried to strangle herself and was sent to an acute psychiatric hospital. My husband and I hired a lawyer. Because Texas didn’t have a long-term psychiatric hospital willing to take Raven, the judge granted an intercontinental compact. In this case, Texas negotiated an agreement making it possible for Raven to receive psychiatric care in Florida. This process would take time, but the judge ordered that Raven was not to return to the RTC. CPS ignored the referral.
Raven was returned to the RTC. Despite my warnings that Raven would crack in that environment, CPS workers did nothing. Besides making my outrage clear, my legal rights to act were gone. Raven did crack about 18 days after being returned. She had a psychotic, manic episode. The RTC staffers refused to call the crisis Intervention team to have Raven assessed. They intended to press criminal charges against her and were uninterested in using the Harris County diversion program.
This arrest added more tension as we scrambled to figure out what would happen next. Would Raven go to Florida or would she stay and face criminal charges? Within 72 hours of her arrest, CPS removed my daughter from the juvenile detention center and put her on a plane to Florida. All charges were dropped. She was 13 years old.
With a different kind of treatment and environment, my daughter improved significantly. She faced consequences if she were defiant, but the approach was different for enforcing the rules and consequences. She learned how to calm herself and learned strategic skills for communicating when she was becoming, psychotic. She learned how to express herself when the hallucinations were too loud. Through weekly therapy sessions, my husband and I learned new parenting skills to use when she returned. We were given reasonable expectations to help us set appropriate goals for her.
When Raven returned home from Florida, the transition from being institutionalized for almost two years was extremely difficult. CPS offered little support and, in many ways, made thing more difficult. At times, it looked like Raven wouldn’t survive outside the security of locked doors and 24-hour monitoring. Most of her suicidal attempts were wrapped in psychotic thinking. One day, for example, while she appeared happy, she swallowed a battery and a few trinkets. She thought, if her friend was going to kill himself, she didn’t need to live either. These kinds of thoughts and behaviors were common on her good days.
As my husband and I began to anticipate the obstacles we’d be facing when Raven turned 18, we decided to move to our weekend cabin in the hill country at the end of Ravens 10th grade year. Raven was excited about this move. We set up new school accommodations before moving and made plans to slowly transition her medical care.
It didn’t take long for the police to know us and, for the most part, they understood the seriousness of Raven’s mental condition. One event, which happened several months before my visit with Linda, left me realizing how easy it would be to lose my daughter to her madness.
After 5 months, when Raven’s illness seemed to be in remission, her paranoia became progressively more problematic. When I agreed to a small medication change, I didn’t know it would set off another downward spiral and lead us back to CPS. While an inpatient, Raven’s medication changes happened abruptly. Doctors added and subtracted new medications every few weeks while she was withdrawing from her previous therapeutic combination. Meanwhile, they sent her home even when I expressed my concerns. It was no surprise that, each time she was released from the hospital, she became sicker and more psychotic. I had the first doctor removed from continuing to treat Raven. He told me the therapeutic level of medication wasn’t good for her and he wouldn’t prescribe it, even though it had kept her home for almost two years. The second doctor wasn’t much better. Raven had a total of six hospitalizations in a six month period.
Ravens biological father had contacted her on social media while her life was going relatively well. At first, she expressed no desire in knowing him, but her interest was suddenly peaked during the downward spiral. She was enrolled in the partial hospital program on the day she decided to leave our house on foot. Because she was acting strangely, I called the police. When the police assessed her, they determined she didn’t meet criteria for a commitment, but admitted she didn’t sound coherent.
I’ll never understand why the police drove Raven 15 minutes to a local restaurant so she could use the internet to contact her biological father. She wanted him to pick her up so she could live with him. She hadn’t seen him since she was three years old and CPS had terminated his rights. I was told, because she was 17, I couldn’t stop her regardless of her severe mental illness. Her biological father lived four and a half hours away. He was only thirty minutes away from getting Raven before the hospital administrator, the police in the next county, and I shut down her plans. Soon we learned she was being commanded by her hallucinations to kill my husband, me, and her pets, but she didn’t want to act. The only solution she could think of to protect us was to find a new home. She was committed back to the psychiatric hospital. My daughter could have left with anyone that day and I might have lost her forever.
When the severity of Raven’s symptoms became more dangerous for her to live outside a secure living facility, my husband and I made it clear we could no longer bring her home. Her psychologist agreed. During another psychiatric hospital stay, the doctors finally put in a few requests for long-term hospitals to help get her medications working properly. San Antonio State Hospital did an assessment but declined treating her. Cedar Crest Hospital declined because of “aggression” so Raven was sent home. I was not yet willing to call CPS, so we decided to take another chance, hoping the meds would finally be right.
Less than two weeks later, showing signs of being very sick, our daughter started a fire in our cabin. We were able to put the fire out quickly. When police picked her up, it was clear she needed long-term medical care. They didn’t even hint about pressing charges. Only the doctor treating her asked if we were doing to press charges, suggesting that might be the best way to get her help. He psychologist didn’t agree with the doctor.
That evening, my husband and I went to the hospital to talk to the doctors and to check on Raven. We were shaken by the events of that day, but we weren’t angry with her. She’d been medication compliant. When I entered the hospital room, Raven was entertaining herself with peanut butter and a spoon. After we hugged, I saw that she was behaving like a 5 year old. She showed me her neat trick. She could put the spoon and peanut butter on her nose, and giggled because it wouldn’t fall off. She seemed oblivious to the events that had just taken place. The next morning, I called CPS and explained why I was unable to bring my daughter home. My heart broke.
In spite of everything, I see hope. I see more people, like Linda, who care. I see more of us telling our stories so we can make a difference. I see social support groups available online to give advice and support. I see a movement of people who are tired of fighting a system that fails us and has no accountability, and tired of finding our loved ones incarcerated or homeless. I see people educating our politicians and trying to make improvements. I see change coming.
I’m excited to play my small part in fighting for one of the most vulnerable groups of people in our population. I share my story because it needs to be heard.
UPDATE: Raven is back in an acute psychiatric hospital and the doctors have yanked the medication combo that keeps her from the behaviors that we can’t live with. Again, they claim the medications are not "good for her" — as if being lost in her psychosis leaves her better off. Raven is begging for ECT or brain surgery —anything to prevent her from loosing touch with reality. Anything so she can come home. This brings us full circle as we watch her decline. Her prognosis is looking dim. The meds that keep her functioning the best are being denied to her.
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.
I HATE THIS CRUEL ILLNESS by Anonymous
I spent seven hours at the courthouse. They placed my daughter second on the docket so I had to stay there all day with her agitated and psychotic. She has been in our state facility for 21 months. She is one of three very treatment-resistant patients at the hospital. I just sit idly by and watch her deteriorate. They’ve tried everything they can, within their formulary, so please do not suggest Clozapine as it is not in the formulary.
The only other options are voluntary community services — which she will not adhere to — and for-profit hospitals which are useless. Her condition is worsening before our eyes. We have legal guardianship, yet cannot make her well. I feel so helpless. Surrounding states seem worse.
This is like watching your child die a slow death. The judge granted another 90 days in the state facility, and for that we are grateful because of the alternatives. I just needed to vent as I sat there and listened to her testify, incoherently, and watched her walk out of her own hearing because it made her too anxious.
The reports in court of her behaviors were so distressing — for any mother to hear — that it will forever scar me. Drinking her urine, smearing menstrual blood on her face, writing on walls with her vomit, running in halls naked, dancing suggestively in front of men, smearing her feces, flushing personal items, flooding the bathroom, and then some. She told the judge that she is pregnant by a doctor. She gave a name but there’s never been a doctor in her facility by that name. She put wire from her bra hooks through an earhole that had closed up. Social workers and nurses testified to these things and more. I was unaware of most of it until court. It was painful.
The lawyer representing my daughter berated me to make his case against treatment. But, he offered no alternative. The state provides two attorneys — one arguing for treatment. One arguing against treatment. I live 90 days at a time between one court ruling and the next.
I got a notice in the mail about an incident since court. My daughter smeared her feces in her hair and on her body. The staff had to put her in a special sleep suit.
I feel so empty. If this resonates with anyone, it’s worth the post. There is no clear answer. I realize this. I hate this cruel illness.
HAPPY PIC & POEM
TWO HUMMINGBIRDS
Two baby Hummingbirds
I’ve named them Pert and Prim,
So tiny — there are no words,
But life force beats strong in them.
I’m humbled bearing witness
To fledglings hidden in my tree,
My kitchen window gives me access
To wonders with no need of me.
Mama flits in zig-zag thrusts
To her nest with babies crying,
To throw off eyes she doesn’t trust
Predators who might be prying.
One week young and old today
Welcome to our changing earth,
We must care for it they say,
As you remind us with your birth.
Dede Ranahan
Hope you have a good weekend everybody!
http://www.bit.ly/soonerthantomorrow
BEYOND MY UNDERSTANDING OF WHAT BEING HUMAN MEANS by CJ Hanson (PART TWO)
To my twin sister, Linda Rippee,
I just came on Facebook, after taking a nap. I could barely read through your post without tears flowing down my face like a stream from a mountain top. A stream that never ends. I didn't think I had this many tears left. I feel so helpless, with my own illnesses, that I am unable to help with a physical presence. The responsibility and the experience of actually interacting with Mark have fallen on your shoulders.
Is there such a thing as survivor's guilt without having actually lost someone? I can't describe the pain I feel any other way, so I’m at a loss. I’m at a loss at the pain and suffering he endures every day on the streets, knowing that we have no legal right to force him to live with the few of us left, nor is it even possible. Knowing that we have fought for 32 years trying to help him and make his life better, and knowing that he blames us for allowing him to live as the doctors didn't believe that he would. Knowing that the laws in this county, state, and nation are against families of loved ones who suffer from traumatic brain Injury and serious mental illness. Knowing that, no matter how hard we’ve fought every day to change minds, hearts, rules, and laws, so far we have failed. We have failed.
I have such a hard time believing that we’ve failed, but we have. It matters not that we have fought every day. Every single day for 32 years. Yes, for a while he was able to live a somewhat normal life until the mental illness set in. The doctors said it would happen eventually, but what has happened to him since? The apathy of people with the power to change policies, rules, and laws is a clear indication that, not only have our efforts failed, but the lawmakers have failed. How many potential bills have failed over and over as the lawmakers insist there is more legislation now for the seriously mentally ill than ever before. That may be true, but they keep failing. Failing the sufferers. Failing the families. Failing society. No human being should have to live without options like our brother. I am having difficulty understanding anything anymore about this travesty.
Facing my own mortality only makes me feel more like a failure. I still have in my mind that 12-year-old boy who tracked me down at a friend’s house after I had moved away from home at 18, and clung to me begging me to move back home. I still have in my mind seeing Mark that day of the accident, barbecuing at Mom and Dad's house and telling us how he wasn't going to keep that motorcycle but was putting it up for sale. I still have in my mind that he was on his way to my home, in Fairfield, that night to see me when the accident happened.
Did I fail him, Linda? Did I fail him by making the decision to let the doctors try to save him? Was I wrong to want him to live? I thought I was making the right choices while I actually had power of attorney back then. I'm not so sure, now. What are we to do now? Lawmakers and officials have tired of our continued efforts and have turned their own blind eyes away from the situation. No one, who has any power to give families back their rights, or to change the laws preventing us from helping him, cares. Not really.
I have no faith in lawmakers’ motivations anymore. Not one has proven that they care enough about the families of the seriously mentally ill to truly push through what needs to be done to make a real difference. I can't stop crying — for Mark, and how he lives and suffers; for you, being the last one in our family to be able to go out and find him; for myself, for being so helpless in my own infirm condition and disability; for Mom, who will leave this earth knowing her youngest child will most likely die on the streets; for all the ignorant and uninformed people who find such joy in blaming our family; for those in the community who do care and have tried to help Mark and us for so long; for our society; for this very world.
My despair and tears are beyond my ability to explain anymore. Beyond my understanding of what being human means.
See Linda’s story yesterday, June 26, 2019. “Rewind and Erase.”
REWIND AND ERASE by Linda Rippee (PART ONE)
Today, I went and found my brother, Mark. He was lying on the sidewalk at a busy entrance to a shopping center. Cars were whizzing by. Another man was sitting there with him and, as I approached them, I could see that Mark was giving him money and asking him to count it. I was immediately suspicious. I asked my daughter to remain in the car.
I walked up quickly and called Mark’s name as I always holler his name before approaching him so not to startle him. I waited until he recognized my voice before I began conversation. Mark pulled another dollar bill from his pocket and asked me what denomination it was. I was concerned that maybe he was buying street drugs. No, that wasn’t it. Here sat another homeless person who had talked my blind brother into giving him all his money to buy a gold pocket watch. He laid out $14.00 which was all that he had. Unless that watch could verbally tell time, what on earth would a blind, gravely disabled man need with a pocket watch?
Good thing I had brought him food, water, and clothing. Mark was shirtless, but had a very heavy coat on. Today, the temperature is supposed to reach 98 degrees. I begged him to take off the coat. He refused saying the coat would be stolen. He was extremely sunburned already. The wounds on his face and around his empty eye sockets were still badly infected from two different beatings several weeks ago when he was robbed. Today, all he had with him was a small blanket. His clothing was disintegrating as he wore the same pair of pants all through the winter and spring. He didn’t have a cane to guide him. He has had 11 different canes this past year.
I sat down next to Mark and, within seconds, it was obvious that he was delusional. He grabbed my hands and slapped them down, hard, on his leg that has a metal rod from crotch to ankle. He held both my hands down with his hands. His hands looked like leather and were cracked and bleeding. Regardless, he continued to hold my hands tightly. His entire body was trembling. He said, “We have to go back and erase each year that has passed since June 21, 1987 (the date of his motorcycle accident). Rewind and erase.”
I was shocked that he still knew that date. Yes, it was Father’s Day, but he still remembered the actual date. He proceeded to say each year backwards to 1987. With each year, he said, “Rewind & Erase!” He shook, violently, until he reached 1987. Then he grabbed and hugged me and said,” Now, don’t you feel better?”
I told him, “Yes, and I hope you do too.” He began to argue with the voices in his head, screaming that the police were implanting and growing people inside of people and controlling them. I tried to calm him and get him to eat the food I had brought him. He would take a bite, chew tiny bites, and then spit it out.
He brought up my twin. Mark doesn’t always comprehend what I tell him, but I continue to tell him the truth. CJ, my twin sister, had gotten bad news about a medical diagnosis. I shared her condition with him. He began yelling at the voices he hears and blaming those voices for all the pain and suffering of those he loves. The intent of his body language was to beat himself up. I hugged him, and once again reminded him that I love him — as I do on every visit. He didn’t want to let go and held on tight for a while. As I was saying goodby, he began crying. He said, “Someone disconnected me from my mother. They’re cutting out pieces of me.”
I slowly walked away, feeling sick to my stomach. If only I could “rewind and erase” all the horrible memories, delusions, pain, and suffering he’s had for the last three decades. Yes, Mark, I would feel better.
Linda adds: Every letter/email I’ve sent out has also been sent to the County Board of Supervisors. I’ve sent out over 1200 emails and my twin, CJ, has sent as many. Each time, we copy agencies and politicians. We’ve saturated them. We’ve sent out thousands of private messages all over the state, and made thousands of posts and comments in over 100 social media groups all over California. CJ authored the petition for AB1971* and we collected 56,000 signatures that went to the full assembly and senate. I’ve made 30 speeches speaking at public meetings. I’ve testified twice at the capitol in support of AB1971.* I’ve gone to the capitol and told my brother's story to support several other bills. There have been 12 news articles and TV interviews. Mark’s story has been published in three national blogs and used at medical conferences. We’ve friended, and are in contact with, several well-known national mental health advocates — Ron Powers, Teresa Pasquini, Leslie Carpenter, Dede Moon Ranahan, and DJ Jaffe to name a few. The Board of Supervisors are ground zero. They are aware of all that we’ve done. They stay silent and do not converse with our family. The next project we are working on is a documentary. I have many, many videos of my visits on the streets with Mark. We will make the videos available to politicians and to the public. They are undeniable. When they are shown, Solano County should hang its head in shame.
Note: Solano County has declared Mark to be competent.
*AB1971. This bill would, until January 1, 2024, expand the definition of “gravely disabled” for these purposes, as implemented in the County of Los Angeles, to also include a condition in which a person, as a result of a mental health disorder, is unable to provide for his or her basic personal needs for medical treatment, if the failure to receive medical treatment, as defined, results in a deteriorating physical condition that a medical professional, in his or her best medical judgment, attests in writing, will more likely than not, lead to death within 6 months, as specified.
See Linda’s story, “I’m Past Anger. I’m in Complete Despair.” June 6, 2019, in the archives.