It begins, as such stories do, with common human struggles. Like many who endure mental health downfalls, Matt’s life was consumed by a perfect storm of circumstances including relationship stress, a partner’s decline in health, and caring for a young neurodivergent child—all of which, combined with his own health ailments on top of being the sole financial provider, exacerbated his overwhelm, depression, and anxiety. This led him to his initial treatment and drugs, which led to more, then more, then more, evolving into a long and arduous cascade of psychiatric harms.

But the combined intelligence and cognitive awareness of Matt and his mother’s tenacity for answers undoubtedly gave him a second chance on life. Matt’s willingness to become well—and his mother Meagan’s quest to learn and change the system—were steadfast throughlines to his recovery. 

The Q&A below is pulled from months of back-and-forth with Meagan, whose name, like her son’s, has been changed.

Can you share a bit about Matt’s story—and when you knew he was declining? 

For a period of four years, from 2014 through 2018 during his decline and overwhelm, Matt was prescribed five different antidepressants layered on top of one another without tapering, which ignited a cycle of adverse reactions. It soon became clear that other than numbing him out, they were not helping. 

I knew in October of 2018 that Matt was in trouble during a phone call, when he told me in a cheerful voice that he had been to the ER for “mental health reasons” but was “fine.” The ER physician had given him Prozac.

A few weeks later, Matt’s wife informed me that his personality had changed drastically, sometimes sobbing for hours since he began the antidepressants. Knowing something wasn’t right, I called Matt’s younger brother, who lived nearby, and it was revealed that Matt had said he’d discovered the key to time travel and was being watched by an evil eye.

This psychosis elevated when Matt began calling me several times a day filled with anxiousness and difficulty finding words to express himself. Fearing for his safety, I finally convinced Matt to get a psychiatric evaluation. By late November, 2018, Matt found a psychiatrist who diagnosed him with Bipolar 1 disorder after one visit, prescribed Latuda, tapered him off Prozac, and practically sentenced him to be medicated for life with an overall “fair” prognosis. The psychiatrist did not have room for Matt as a regular patient, and the psychiatric nurse practitioner in the counseling office took over his medication management. 

In late December, I flew to Washington to see Matt and found him out of sorts, quiet, tired, obsessively scrolling through his phone and jiggling his knees. His personal life was in an upheaval with his impending divorce resulting in 50% custody of their child, and he was forced to sell his home and find an apartment.

Following that visit, my husband (Matt’s stepfather) and I decided to relocate to Washington to live closer to him. Upon our arrival, Matt helped us unload, and it became apparent that he had lost a lot of weight. I could see his lifeless eyes. I knew we had made the right move to be near him. 

Thankfully, from my work as a music college professor, I understood the connection between music and the brain. During a kismet connection with a neuroscientist colleague, he referred me to Open Dialogue in Finland. Being open to obtaining support outside the mainstream medical model, my friend warned me that antipsychotics were very difficult to discontinue, and discontinuing could lead to worse outcomes. Thankfully, with Matt’s meticulous and disciplined nature, he would take the medicine regularly, as he believed getting well meant compliance as a key to success. While adverse side effects like liver damage were exceedingly rare, I could already see that Latuda was hurting Matt, as he showed signs of exhaustion, appearing thin and gray.

When did you realize that Matt was in a deeper state of challenge?

In October 2019, during Matt’s move to a new apartment, I observed that Matt was emotionally paralyzed, unable to pack from lack of sleep. It was soon revealed that his GP had increased his Xanax on top of the Prozac that was also prescribed a few weeks earlier, thus numbing him out again. 

Matt explained to me that within six months of starting the Latuda, he was having panic attacks and pacing. He went to his GP, who diagnosed him with “anxiety disorder” on top of his bipolar diagnosis and prescribed Xanax. Matt told the GP that he could not take Prozac, but the GP said, “Don’t worry, it’s perfectly safe.” 

After Matt’s first simultaneous dose of Xanax and Prozac, he felt his brain snap. He never took another Prozac pill but felt he needed the Xanax to function. From that day on, he could no longer sleep. Matt explained to me that the GP had doubled the Xanax dose to 1 mg so that he could take two .5 mg pills per day. When Matt’s nurse practitioner learned that Matt’s GP had prescribed benzos, he simply kept prescribing them along with antidepressants and Latuda.

Anxiety was a new trait for Matt, and I knew him intimately as his mother as a calm and easy child with academic strengths, musically gifted, and a tenacious spirit performing in musical theater. Matt made friends easily, was highly empathetic, and had a great sense of humor. He also was a certified whitewater rescue and rafting guide.

It was difficult to watch Matt pacing and ruminating constantly without the ability to nap or even yawn. I decided to Google “Xanax and insomnia and anxiety” and learned that benzodiazepine interdose withdrawal [when symptoms occur between doses] causes insomnia and severe rumination. I would find out later that the Latuda had sparked akathisia and that the Xanax had intensified it.

How did Matt continue to work and care for his child?

Challenges increased for Matt while maintaining working full time to provide for his child. Thankfully, I was able to care for his child while Matt struggled with brain zaps, numb hands and feet, impulsive suicidal ideation, rumination, stomach pain, insomnia, and night terrors. I did whatever I could for him, from bringing him food to doing his laundry, and would often find him at his apartment pacing for hours. I could see that the insomnia was getting worse. 

When did you realize that Matt was in need of help? 

We attempted to get help from a sleep clinic, and they refused to test him, claiming his insomnia was caused by “mental health issues.” Matt went to the ER several times for insomnia on his own, and during one visit was told to take Benadryl, which made him horribly drowsy at work the first day and then ceased to do anything. His nurse practitioner prescribed Trazodone, which made him manic, and Seroquel, which gave him crushing heart pain, along with Wellbutrin and Mirtazapine, both of which caused more agitation. 

The last visit to the ER jolted us to next-level intensity beginning with the ER doctor who traded the Xanax for Klonopin, another benzo, and prescribed Remeron, saying Matt needed to spend the night at the hospital so that they could “make sure he could sleep.” 

Unbeknownst to Matt and me, he was being admitted to the psychiatric ward, where his basic rights were being taken away with no phone, laptop, books and pens. The institutionalized facility was a cold and sterile environment—no pictures on the walls, drapes covered the windows, and the furniture nailed to the floor. Matt could not leave the facility for three days and had to miss work, so he pretended to sleep to be released.

Later, I convinced Matt to see an integrative neurologist, who questioned the bipolar diagnosis and suggested that Matt wean off the Latuda and the other drugs. The neurologist offered ketamine therapy as a bridge during withdrawal. They scheduled a second appointment. Meanwhile, I sent Matt’s NP [nurse practitioner] links with information on benzodiazepines and the Ashton Manual, asking why the NP had not informed Matt of these risks and why he had not mentioned tapering to Matt. Little did I know, this would not go over well with the nurse practitioner. 

I can only imagine what followed next. Did you feel unheard or threatened as a parent trying to work with Matt’s team?

Two weeks later, both the NP and Matt’s counselor called me and said they must drop Matt as a patient, recommending an outpatient hospital detox program and a “higher level of care.” We learned that hospital detox programs do not safely taper benzos, but Matt was desperate and decided to apply. This required an evaluation at the ER, and his appointment with the neurologist was late the same afternoon. It would be a tight window to make it back in time, and he asked me to accompany him.

Matt told the ER physician that he could not sleep without Xanax. His response was, “Drugs are never the answer.” When I interjected that these were prescribed drugs that had caused dependency, the doctor interrupted, saying, ”Mom, you need to be quiet or you’ll have to leave.”  

As Matt waited in the ER room for hours, severe interdose withdrawal began. When Matt told a nurse that he needed Xanax to sleep, she replied coldly, “We don’t give Xanax here.” 

Fearing he would become delusional from insomnia and lose his job, Matt paced and beat his pillow. Trying to avoid further demise, I went to the nursing station and quietly requested that Matt be released so that we could make an important neurology appointment. 

Apparently, the nurse saw this as combative and called a security guard, who escorted me to the waiting room. The security guard ordered me to leave the hospital and further disrespected me by yelling in front of a packed room that he was going to call the police because I was “disturbing patients.” 

I felt so dismissed, unheard, and demoralized, and I knew Matt would think that I had abandoned him. I refused to leave and waited for three hours when, finally, a night shift nurse told me that I could return “if I behaved.” 

Matt was held overnight and interrogated again the following day. He was not accepted into the program as he was seen as noncompliant due to all his questions. 

“He is so intelligent!”—a social worker seemed surprised.

Since Matt was not accepted into the program, what did you do next?

As we walked to the car, I had no idea what to do at first. Matt began to slip into catatonia as he got into the car, panicked, and started walking back to the hospital. I went after him and stood beside him as he returned to the check-in desk and told the clerk he was suicidal, that he would do whatever they wanted. 

They assured him they would admit him, and I left the hospital. At midnight, a social worker called me, saying that Matt was being transferred to a hospital two hours north of Seattle where there was a “benzo expert.” In reality, Matt had been sent to a state psychiatric hospital, and the psychiatrist there knew nothing about benzos.

How did the state hospital treat Matt? 

Even though he was safe, we soon learned that by his consent to admission, he became a ward of the state. This admission waived his right to decide when to leave, at the risk of losing his career, his home, and ability to support his son. It was just so sad. Matt just wanted help sleeping. 

The psychiatrist called me the next day and announced that Matt had “bipolar disorder” as if this were a “new” diagnosis—and had clearly not seen Matt’s medical records. He prescribed several new drugs in addition to his prescriptions of Latuda and Klonopin. This psychiatrist decided to take away the Klonopin just prior to his release, reporting that it would have no adverse withdrawal reactions. 

This physician was wrong. He didn’t know much if anything about benzodiazepines, believing that “once the drug is out of the system, any reactions are not caused by the drug.” Less than 48 hours after arriving home, Matt exhibited severe withdrawal.

At the time, I knew the only answer was to find a prescriber who would reinstate the Klonopin and then taper it properly. I found a provider near Seattle on the MIA provider list but that provider was full. Thankfully, the owner of the office, a renowned bipolar expert, said he could take Matt.  

There was a momentary breath of relief as I thought, surely he would know that benzos are contraindicated for bipolar disorder and that he would explain to Matt about withdrawal and side effects.

Neither happened. 

While this psychiatrist reinstated the Klonopin, he never mentioned adverse effects or tapering. Matt refused additional drugs when the psychiatrist tried to convince him to start a new neuroleptic, Vraylar. 

My husband and I wrote and requested informed consent. He only replied, “Thank you for the information.” We were going to get nowhere with this doctor. 

After two months of $250 per fifteen-minute weekly visits, Matt stopped seeing him. It clearly was not a fit and he would not be helping Matt. A few months later, I was glad we had left this psychiatrist, because he had even falsely written in Matt’s records that I had a history of anxiety disorder. Imagine that?! 

What did you do when Matt was released?

It was really difficult to watch Matt decline. He had given up hope that he could get well.

I convinced him to try one more psychiatrist who marketed himself as an expert on brain injury. This psychiatrist recommended that Matt discontinue the benzos and trade them for gabapentin. While Matt seemed better for a few days, he soon slid back to barely functioning. 

For Matt, the silver lining of Covid and the pandemic in 2020 allowed him to work from home, which truly saved him. Not having to get dressed and leave the house was truly a blessing in disguise as it likely saved his job and his life. 

Where did you go from there to help Matt? 

From the beginning of Matt’s ordeal, I began voraciously reading and researching about psych med harm. In the fall of 2019, I had discovered the trailers to the films Medicating Normal and As Prescribed. From there I discovered Joanna Moncrieff, David Healy, Robert Whitaker, and more. This brought me to Mad in America in early 2020, where I scoured the website for support groups and discovered the parents support group. Dismayed by what I had heard at local NAMI meetings I attended, I found the MIA parents group to be much more supportive.

Through reading and conversing with other victims of psychiatric traumas, I discovered that antidepressants had been the gateway drug for Matt’s adverse reactions. This led to the symptoms that were diagnosed as bipolar disorder. I also realized that some of his symptoms were likely caused by withdrawal from the many antidepressants he had cycled on and off over the years.

How was Matt involved in all of this? Did he understand what you had found?

Over the months, I had shared many books and articles with Matt, but he did not have the bandwidth to read anything outside of his work. The one book that was accessible and encouraging enough was Baylissa Frederick’s Recovery and Renewal. 

Sadly, one of the side effects of akathisia is ruminating despair, and Matt was convinced that his brain was permanently damaged by the medication and was also sure that he did not have bipolar disorder. He wanted control of whatever time he had left and decided to stop all his medications one by one. He stopped the Latuda first, cold turkey, and then later the others. 

That sounds exciting and brave yet scary to quit cold turkey. How did he progress? 

Immediately I saw life come back to his eyes, and some of his humor returned. Unfortunately, it wasn’t over. Within a few weeks anhedonia, emotional numbing, covered him like a blanket. While Matt had experienced this before on antidepressants, now he lacked the ability to cry or laugh, and descended into a complete lack of sense of purpose for anything he did. His love for his son kept him pushing forward and to continue working at his job without losing his ability to write work emails and concentrate on numbers.

I was petrified, but I asked Matt to give me his bags of medication bottles, and he accepted this. I had never advised that Matt suddenly stop his drugs, but I feared he might take his life nonetheless. There were 11 prescriptions within a nine-month span, and that did not count the numerous drugs he had been prescribed before 2019.

Wow, that is a lot of medication. You had mentioned that you found a resource called Open Dialogue. These therapists are hard to find. Did you find someone in this modality to help?

One of the MIA support group members had alerted me to Open Dialogue therapists living in my area, which seemed like a miracle. I was able to enlist their support so that I also could learn how best to support Matt. We met via Zoom because of Covid and they helped Matt survive the difficult withdrawal period.

I began seeing sporadic windows in Matt, days where his personality and humor returned. Then he would descend back to anhedonia, but I knew this was normal in the healing process and kept telling Matt that his brain would heal. Matt was skeptical, as labels and experience had made him despondent. I decided to send Matt the link to the film Medicating Normal. The opening scenes in that film were shot in Tacoma, near where we lived, and the young man in the opening of the film reminded me of Matt. Watching this film helped Matt turn the corner. It gave him hope that he, too, might recover.

What other support did you receive to help Matt in his recovery?

Another parent support group member put me in contact with psychologist Ron Bassman, and thankfully they began working together virtually. Matt’s turn-around was quick and remarkable. Fortunately, his akathisia had subsided soon after he stopped the Latuda and benzos, but after being labeled and gaslit for years by the medical establishment and suffering from withdrawal anhedonia, he felt his brain was damaged for life and that he was ruined socially. 

With Ron’s encouragement and wise advice, Matt picked up and began living. It was as if he had been resurrected. Matt reorganized his entire apartment in a weekend and decided to take his son on a trip to California after having hardly left his apartment for years. I was a little concerned that he had become manic, but the texts, videos and photos Matt sent showed that this was not the case. Since then, Matt has not just continued to work but excel in a competitive, demanding career. He resumed whitewater rafting, has trained to renew his water rescue license, and is a devoted single parent of a disabled child. He manages his stress well, shows no signs of any kind of mental health disorder; he never had rebound psychosis. His humor and empathy are back. He shuns the conventional medical system and sees a naturopath, who discovered that he was prediabetic, likely a result of the medications. With a healthy diet, exercise, and sufficient sleep, that has since resolved.  

That sounds so miraculous and hopeful, Meagan. The combination of Matt desiring to be well, matched with the right therapist and care in Ron, seems like an important part of his recovery. 

Absolutely. However, we still had the challenge of Matt’s various withdrawal symptoms, ranging from inability to cry in 2019 to 2020 to akathisia on the Latuda that was exacerbated by benzodiazepines. It was subtle at first, starting within weeks of starting the Latuda with jiggling knees and nervous scrolling through his phone. Within four months it escalated to panic attacks and pacing, but he was not telling us because he thought he was reacting normally to bad decisions—self-recrimination is a symptom of akathisia. The akathisia subsided after he discontinued the Latuda and benzos in the late spring of 2020. (He did not “taper” in a systematic way. He was still on Latuda, Depakote, Mirtazapine, Lithium, and Klonopin in March 2020.) 

Not one medical provider accurately diagnosed this or mentioned this, though the final psychiatrist was aware that benzos caused harm. It seems that most have never heard of it. 

His last psychiatrist, who he saw in March and April 2020, started him on Gabapentin and told him to stop the benzos, and he also stopped the Latuda, but it was not a slow taper. By the end of April he had stopped all the meds. Whatever taper he did was short—less than two months, if at all. Just as the akathisia resolved, anhedonia set in. It was unlike anything before the drugs or since, total lack of pleasure in anything, a zombie-like detachment. But he wanted to provide for his son, so he kept working. He was very uncommunicative during that time, so it was hard to get him to talk about what he was feeling. He pulled all his blinds, and lived in the dark for nearly a year. Now he is outdoors all the time.

Furthermore, Matt was experiencing withdrawal symptoms from the antidepressants he was prescribed from 2011-2020. All of the adverse reactions were misdiagnosed as “mental illness.” 

Psychiatrists, general practitioner, nurse practitioner, numerous ER physicians, nurses, social workers all assumed this was “mental illness” and/or suggested that Matt was a “pill seeker” because he could not sleep without benzos after they were prescribed. 

As my parents witnessed Matt’s journey, they remembered that my sister, who died in 2013 at the age of 37 of a leukemia that usually strikes after age 60, had suffered terribly because of antidepressants. Prescribed when she was just 18, after her mother was diagnosed with cancer, she gained 150 lbs, lost motivation, developed severe psoriasis, insomnia, severe social anxiety, agoraphobia, and severe sensitivity to anything perfumed. She had been healthy, active, and outgoing as a child. Three years before she died, she decided to discontinue her medications and therapy, as therapists had suggested the medications. She lost weight, regained her motivation, went back to graduate school, and following her graduation found a job she loved and an apartment. Just after starting the job, she was diagnosed with leukemia and died a year later. 

There is a warning on Prozac and Paxil, both of which she was prescribed, of blood platelet changes. I found an article confirming that these changes could progress to leukemia. No one else in our family has had leukemia. My sister was 13 years younger than me with the same blood type. 

Furthermore, I made the connection with my brother-in-law, who died by suicide in 2004 at the age of 52, who showed no sign of mental illness until he began antidepressants in his late 30s. He began taking them during a difficult personal life situation. From that time forward, he was in and out of psychiatric hospitals. He took his life the day after returning from a hospitalization.  

The “mental illness” of my sister and brother-in-law were considered evidence that Matt had a mental illness “gene,” which of course has never been proven to exist.

Letting that seep in for a moment. What other discoveries have you made around drugs and recovery? 

As I began my research on psych drugs, I began to join social media support groups to learn about symptoms others had experienced. Most reassuring was the fact that most people survived and recovered after getting off the meds. But some did not. 

After my son began to recover, I shared his story in the groups, and individuals would contact me asking if I had advice or could point them to safe providers. I never told them to discontinue the medications, but I pointed them to the Mad in America provider list, to Baylissa Frederick’s website, to the Inner Compass Initiative, and to the film Medicating Normal. 

For some, it was too late—their child or spouse had already succumbed to the damage caused by these drugs. One young man, “Angel,” corresponded with me for a year. He was bedridden and had not slept more than an hour a night for years. He was penniless, living with his mother, unable to care for his daughter, and his psychiatrist told him that she never deprescribes; she only raises dosage. He was desperate. One day he stopped communicating and I found an obituary.

That is so heartbreaking and unfortunately not uncommon. Do you have any stories of recovery from the people you have encountered?

Yes, another woman who contacted me, a translator and business professor from Malaysia, was bedridden with side effects of benzos and antipsychotics. She had been prescribed Seroquel for insomnia caused by worries about an eye surgery. She had immediate reactions and was diagnosed with bipolar disorder. Her family forced her to take the medications. She fought with all her might. She would call me on video calls, weeping. She needed reassurance that she could recover. We exchanged small gifts of support and friendship. I am so happy to say that she is off all medications and has resumed her professional life, winning awards. Her social media posts show a well-balanced, happy individual. However, she has permanent knee and eardrum injuries caused by struggling against a brother who was forcing her to take the medication. Her big heart has allowed her to forgive her family as she knows that they thought they were helping her. 

It is such a blessing: now that you have this recovery story in your family, you can help so many others. Thank you for sharing your story here with Mad in America. What would be some of the last pieces of advice you can provide? 

I think it is important to acknowledge that these experiences ignite trauma within the whole family. It is impossible to adequately describe what parents whose children have been damaged from this system experience. It affects everything about their lives: their careers, their finances, their social lives, their family lives, their health. Life revolves around keeping their child alive or grieving for them. And they experience this all in the midst of a society that screams “Pill shaming! Stigmatizing mental illness! In denial!” when they speak out about corruption and harm.

I am resolved to express the truth about psychiatric drugs to spare others from harm and grief by telling my story, and with some local activism. We are a small community that needs to find one another to continue to support each other and help our children survive in a confusing and contradictory world.

(For more in Karpaty’s series of interviews with parents and other family members, “Giving Caregivers a Platform,” click here.)

The post Giving Caregivers a Platform: Meagan, Mother of Matt appeared first on Mad In America.

Tony, who lives in Virginia near his mother, lost his speech and eye contact at a very early age, when he received an autism diagnosis. By the time he was 11 years old, his neurologist gave him an extremely poor lifelong prognosis. This did not stop Sherita from believing that her son was intelligent, as he went on to complete school and higher education with a degree in botany. 

During his last year of college, Tony was prescribed medications for obsessive-compulsive disorder and anxiety, just as many others on the autism spectrum are prescribed multiple drugs that only contribute to their distress. Unfortunately, these drugs made Tony aggressive and combative, and at one point he knocked Sherita unconscious. His mother has remained Tony’s main caregiver while she has watched him decline over the years from the continuous drugs prescribed for diagnoses that also include schizoaffective disorder, depression, schizophrenia, mood disorder, psychosis, post-traumatic stress disorder, and bipolar disorder. 

At one point, Tony was given medication for ADD, causing him to develop “tics”—which were then misdiagnosed as Tourette’s syndrome and given even more medication. There is a possibility that the multiple drugs prescribed to him over the years have caused akathisia and/or tardive dyskinesia, dysarthria (weakness in the muscles used for speech, which often causes slowed or slurred speech), and aphasia (a language disorder that affects a person’s ability to communicate). The latter usually involves involuntary repetitive movements of the face, mouth, fingers, or arms, while akathisia is an internal sense of restlessness, which may result in movement such as rocking back and forth or excessive pacing. There’s a further possibility that Tony has suffered from withdrawal, having been taken abruptly off of psych drugs by a community services board, without any treatment centers that could help him—because they wouldn’t work with people with autism—and plunging him into a worsening state with a dependence on a powerful herbal extract, Kratom. 

This story is an example of how women—especially women of color and women who face a mental health crisis without a man present when speaking with individuals in the health care system—are treated differently. Sherita is a warrior of integrity, tenacity, and intelligence who lives in a daily battle for her wellbeing as well as Tony’s. A retired Navy veteran and federal government civil service member with a postgraduate degree, she now lives with the debilitating pain of fibromyalgia, a chronic health condition that causes pain and tenderness throughout the body. Her symptoms are exacerbated when faced with stress and cause intense flare-ups, and it is no doubt the presence of both in her life have created these physical challenges. 

Sherita has been arrested with false charges for trying to keep a prescription away from her son so he wouldn’t fill it and overdose. She’s been called a drug pusher by police officers—even though, at times, she’s refused to give her son the prescribed medication that she felt would be detrimental, since he has been overprescribed medications in the past. Tony has had medication dependencies due to overprescribing and has been called a drug addict by police—even though he has never taken an illegal substance in his life. The layering of drugs has exacerbated the lack of clarity on what actually needs to be treated. Ideally, Sherita would like Tony to be in the care of a proper facility to help determine how the excessive medications have harmed Tony and to get him the help he needs. Unfortunately, Tony has been mistreated by all levels of care with virtually no recourse for a medical malpractice lawsuit, as finding a lawyer to take their case is a daunting challenge. 

Tony went off prescription drugs in September 2021, when he was released from the hospital with none, though he was on them while being held there. The list of drugs he took over the years is long, and he’s still living with the consequences. In the past, Tony has been addicted to Tramadol (240 50mg pills a month) for pain, which was given to him for anxiety, while also on other medications for anxiety, such as Clonazepam and Lorazepam, which seemed unnecessary. He was prescribed the antipsychotic drug Invega Sustenna, which stifles his dopamine levels to help with OCD, while at the same time taking Adderall, which increases dopamine levels to help with concentration for ADD. Tony liked the Adderall because it helped him to focus and he felt more like himself. The doctors prescribed various other medications that sparked aggressive behavior and other psychiatric illnesses he did not have prior to taking the drugs. 

While Sherita and Tony’s story is unique to them, unfortunately, their challenges are not uncommon. It appears that what is often left out in care for patients in the mental health system is the care for the entire family unit. As a mother, Sherita has endured her own version of trauma, having been pushed aside, disrespected, and made to feel like she has no voice. It is almost as if her voice becomes—to other people—a hysterical version of herself unable to get people to work with her to help Tony. 

Instead, she has endured her own physical limitations which, in turn, do not help Tony, the most vulnerable and important person in her life. As a mother, she would walk through fire if she thought it would help him, and that is what she is doing: walking through fire. 

How has Tony changed over the last five years? What have you seen from your perspective as his mother? What have been the effects of all those psychiatric drugs/treatments on him?

I watched my son, who was struggling from all of the previous medications he was given prior to May 2018, but he was still able to function. After his medications were thrown away by the Norfolk Community Services Board, he went downhill fast. In July of 2018, Tony drove down to Virginia Beach where he consumed a large amount of [the “supplement”] Kratom and he almost drowned. Tony started taking Kratom when he went into medication withdrawals to replace his medications that were thrown away, as Kratom can have a stimulant and/or an opioid effect when taken. 

It became apparent that Tony became addicted to Kratom. After taking the large amount of Kratom, Tony has never been the same. He has a considerable amount of trouble focusing, cognitive decline, and memory problems which he didn’t have before. I watched him go from 233 pounds to 187 pounds in three months. My heart broke watching my son become a person I didn’t recognize. He would come to my house at all hours of the day and night asking for my Fibromyalgia medication. One time he went to my neighbor’s house at 3 o’clock in the morning, banging on their door, thinking it was my door. He wanted medication for his immense pain caused by the withdrawals. I looked for treatment centers all day everyday here in Virginia, but none of them worked with adults on the spectrum who were also dealing with addiction. [In his case, the addiction to Kratom plus the overly prescribed barbiturates, opioids and stimulants.] 

I see a person who has been diminished from a young man determined to get his college degree, completed a B.S in science, to a young man who has no quality of life. He used to drive a car, had friends, laughed and told jokes, was independent, was able to think and enjoyed things in life. Now he stays in his apartment for the duration of the day. The only thing that helps him is walking, because he doesn’t have to think clearly, focus, or concentrate on anything, just walk. He asked for a PlayStation 5 game set one Christmas but he could not even play the games because he couldn’t “think clearly.” He is a shadow of himself—someone I love desperately but sometimes am afraid of.

I believe that after his medication was thrown away in May 2018, his near drowning, the Kratom addiction, [and] multiple hospital stays with overprescribed medications, he has had so many more mental and physical challenges. He struggles to find the words to speak and this scares him, so he doesn’t speak much. [Aside from the other harms of his medications and Kratom] Tony also has side effects [possibly tardive dyskinesia] like uncontrollable hands, fingers, arms, and body movements, “sound making” with his mouth and speaking his thoughts aloud. When he does talk, his words are sometimes unintelligible or slurred. I think this deeply upsets him and he is scared because there has been no effective treatment from the multiple doctor visits and treatment center. At one point I asked him for a grocery list and while he listed off items, he hopelessly said, “I know I don’t talk the way I used to.” 

This is only one of the experiences with Tony that has brought me to my knees in despair. I believe in my soul that the medications and Kratom have contributed greatly to my son’s condition. I truly believe that the medications and Kratom have made my son worse than before. 

As Tony’s mom, it sounds like you were unheard—and badly treated—by police and people in psychiatry. Do you believe race played a role? How has this impacted you and your health? 

I do believe race played a role in various situations, and particularly at hospitals like John Hopkins, Massachusetts General Hospital, VCU, Virginia Commonwealth University Medical Center, and the Emergency Department at Vanderbilt University Medical Center. I also believe being the “mother” played a major role in it. I feel if Tony’s father (who’s deceased) was with me or if I had a male figure with me at these appointments and the hospitals, Tony would have gotten some kind of treatment—by now we would have been seen and heard as a team, contributing to his health. I have spoken to a number of women who have expressed similar feelings. These women also found it hard to get the help and be taken seriously because they are female. 

At a support group I attend, a mother said her son had been in the hospital for five years and now he is doing so much better and is out traveling. I asked her how she did it while he was in the hospital. She told me it was because of his male friend who was able to get her son the help she could not.

The other thing I feel played a part in Tony not getting the treatment he so desperately needed is the Norfolk Community Services Board (NCSB). When they threw his medication away, I filed a human rights complaint against them on behalf of my son. After that, everything written in Tony’s notes about me was negative. They sought to defame my character, and they did—which hurt my son’s ability to get the help he needed. After his case worker would talk to the hospital he was in, the doctor, nurses, social workers, and practically no one would talk to me or entertain anything I had to say about Tony’s history. 

In the hospital’s notes it was written that I withheld his medications, that I might be abusing my son, that I took him off of medications, etc. They also said that I took him out of a treatment center against medical advice even though I gave them a reassessment letter from the doctor who released Tony because he said he would get better treatment at a center [that] also treats people on the Autism Spectrum. To this day, the NCSB has not made any changes or offered me any apologies for their false accusations of taking Tony out of the treatment center against medical advice. They didn’t verify what they wrote with anyone before accusing me in Tony’s notes. I had a meeting with the director and the deputy city manager concerning this issue in which I again gave them a copy of the reassessment letter, but nothing was done. They have also told nurses and doctors that I continue to take Tony out of their programs even though I have provided them with their own notes that stated they released Tony from their programs because I took him out of the treatment center against medical advice.

Even though I filed another civil rights complaint against the NCSB for accusing me of taking Tony out of their programs, I’ve never received an apology and no one has been disciplined or reprimanded for their lies concerning me. None of these questions were verified prior to the write-ups in his charts, thus believing the caseworker and not verifying the truth with me, the mother and caretaker of Tony. This has prevented Tony from receiving the help so desperately needs.  

From my perspective, I believe the mental health system has failed my son and many like him. It has been evident that the healthcare workers do not care about people struggling with mental illness, the very people they are supposed to help. 

Given all that’s happened to Tony and you, where are you now? How do you get through the day?

It’s been incredibly difficult, especially since we got back from a neurology appointment in Massachusetts in which they did not refer him for further assessments, tests, or to any other clinics that provide treatment for his other conditions [such as TBI]. I had such hope that they would at least make an attempt to help him. They just prescribed multiple new medications, which he does not take, and blamed his symptoms on autism. I could not believe my ears. I’ve been feeling depressed and very anxious. I had to call the VA [Veterans Affairs] yesterday in search of a support group and therapy. The lack of help, concern, sympathy has really affected me.  

I’m trying to pick myself up, be strong, and fight for my son—but it is hard. Sometimes I just don’t know what else to do, but I have to do something. If Tony doesn’t get any help soon, Tony and I might head to the Governor’s Mansion or the White House with a picket sign. I’ve reached out to my state senator and delegates and was offered a 30-minute meeting with the senator and delegates. While it feels like a slight to be given only 30 minutes to share what has happened to us, I intend on showing how the mental health system in Virginia has failed us in the hopes it will help us as well as others. I’ve got to do something to bring this issue of the poor mental health services in Virginia and in this the country to the eyes and ears of people who can help make a change for the people.

What do you want other parents to know as they’re advocating for their children?

Normally I would have a lot to say, but it’s hard when I’m feeling defeated. I would want them to know they have to get with people who are advocates, like MIA, to be encouraged by the successful stories that others tell. They have to dig deep within to find that strength they need to keep fighting for their loved one.  

From my perspective, because I had the tenacity to fight for my son and exposed the  mistreatment of Tony, the health care workers and doctors turned on me and wrote lies and harmful reports in his record. 

[I would tell them to] educate themselves on their loved one’s condition and all treatments available to treat the condition, follow research for that condition, seek out functional doctors [and] psychiatrists, neurologists, scientists, experts, different and natural treatments that are available. Get involved with advocacy organizations, write your politicians, and tell your story. Do not keep it to yourselves. We have to stand up together and fight, for that’s the only way to make a change.  

Do not be ashamed!

Most of all, find some way to release the stress of it all. I know it can be hard. Do things that make us happy or feel good, even if it’s just reading a book to take us to another place, at least for a little while. Exercise to release the stress. Pray, write down your affirmations, make a vision board with a picture of your loved one in the way you want to see them, happy, smiling, not struggling and living a full healthy life. Manifest the cure. See your loved one as you would have them. 

If you need to talk and have no one to listen, I’m a call away. I know how it feels to fight. You are a fighter, stronger than you know!  

If anyone has a referral of any kind for Sherita, please reach out to parents@madinamerica.com to connect you. 

The post Giving Caregivers a Platform: Sherita, Mother of Tony appeared first on Mad In America.

Chandra has been navigating the medical system to help her daughter get to the bottom of her challenges so she may lead a happy and healthy life. Unfortunately, Sophia’s distress and diagnoses unfolded over many years, involving self-harm, anxiety, phobias, and chronic physical pain that created real internal inflammatory challenges and left doctors stumped. Treatments of Prozac and other medications became band-aids. Only much later was the possibility of her being on the spectrum considered, as it was not on psychiatrists’ radar for young girls. 

Like many mothers, Chandra continues to learn about the intricacies of Sophia’s multiple diagnoses—and their impact on her—and reflects on where the medical system and its partnership with parents and children fall short. Chandra honors her now young-adult daughter’s boundaries for independence while doing her own work to assist whenever she is open to receive love and care. 

What is your child’s name and age? Tell me a little about her story and yours.

My daughter, Sofia, age 35, lives in the Pacific Northwest and has had a long road to multiple diagnoses, support, and treatment, which continues today. 

By the age of 8 she was in therapy for her social anxiety and then prescribed at age 10. At the end of 3rd grade she witnessed a classmate being crushed by his garage door. Her grief counselor kept his spirit alive by naming her plant and pets by his name. 

Many days of school were missed at the age of 6. She expressed chronic pain from headaches, stomach aches, and fatigue. The pediatrician prescribed Advil and Pepto Bismol, because what else do you do at that age?  I wanted answers for my child, who was relentlessly suffering, and soon I became this mother taking my child to a psychiatrist. I had awareness of the somewhat new [DSM-IV] and the positive and negative connotations. I feared her integration into the medical model and the prescribing of medications at such an early age, [but] I had to help my daughter from her continuous pain.  

The label of “child” to “sick child” did not help her anxiety and only exacerbated it as she moved through elementary school. Sophia’s phobias and extreme reactions—from loud noises to seeing spiders and bees—caused us to leave activities on short notice. Unfortunately, her pain isolated her as well, as our family was at a loss at how to truly help her. 

Socially, it became quite difficult for her, and her school didn’t seem to be a fit. Together with the doctor, her father and I decided to put her on a very low dose of Prozac for about three years. It provided stability, and she began to do better in school and social situations. 

We moved to California when she was 13. She went through a whirlwind of medications for the next three years. While she was doing well on Prozac, her father didn’t want her on it anymore due to the alarming newly reported side effects on suicidal tendencies. Talk therapy helped her through her anxiety issues, and Buspar was prescribed. 

Sophia’s characteristics of suicidal ideation and cutting/self-injury persisted, and while at the time the traits exhibited like bipolar disorder, [doctors] were cautious of that diagnosis, as it was reserved for older children. Plus, that diagnosis was known not for doing well with SSRIs, so Wellbutrin was prescribed along with Buspar.  

While my challenging relationship with her father resulted in divorce and we became co-parents, he stayed on the east coast while Sophia, her sister, and I stayed west. The divorce [was] compounded by her questioning her gender identity at a young age, which would cause anxiety for anyone. 

However, as time marched on there were traits that were not understood—from cutting on her arms and legs, and days she would not leave her dark room. She suffered pains in her legs, which were attributed to “growing pains,” which seem to have been another signal of what was to follow in more recent years. While Sophia had some great success at a new private school, her subsequent return to public education for an IEP (Individualized Education Plan), her hospitalizations and potential for residential treatment caused prolonged turmoil. 

Still not diagnosed with autism, her crowning incident occurred at school—where there were no walls between classrooms, so the noise of clanging and high-pitched noises traveled between classes, [and she was also] able to see all the chaos in other rooms. Hearing one particular teacher who often yelled impacted other classrooms, and especially Sophia. At one point, this teacher yelled at Sophia for not having a particular organization of her classroom utensils and slammed her tray on the floor to make her put it back together again. Again, another failure in the system, where teachers were clearly not aware of sensitivities. 

As Sophia has grown into a young adult, her symptoms are exacerbated: with elevated inflammatory markers; with multiple rotating pain conditions, from her jaw to gastrointestinal; to a (confirmed) connective tissue disorder called Ehlers-Danlos Syndrome. She has grown to be her own best advocate and is always researching to find answers in how to help herself. My daughter believes that she was placed on these psych meds—which certainly helped her anxiety, but never helped her chronic pain—because psychiatrists only saw her symptoms as psychosomatic and didn’t consider that there was something physical going on to address. The underlying physical issues causing her pain were overlooked and misattributed to being psychosomatic.

I’m grateful that she earned her advanced degree with an MFA, and has been open in her journey, expressed in her thesis, of her mental health journey through her second hospitalization. Around age 30 she moved with her boyfriend to the Pacific Northwest.  They wanted to be “adults,” and this has many ups and downs, often not going very well. 

As she approaches mid-life, sadly she sees her life as being very limited, most recently due to fear of exposure to Covid and her pursuit of better treatment to enhance her life. [She was] evaluated as being on the autistic spectrum at age 34. That in of itself is a whole new journey to uncover and seek understanding, and it does provide some answers to the historical path.

Working at conventional jobs was always problematic, and Sophia has never worked full time.  She has pieced it together and at times did well on editing jobs. After much effort to pitch her book for publication, she ended up being more successful writing articles for newspapers and magazines and establishing her own press, self-published a book of her poetry, and curated other poetry chapbooks, all of which earned her some income.

What do you feel about Sophia now, looking back as her parent? 

There are multiple observations I have made as Sophia’s mom now, looking back. From a research perspective, I see that the DSM helps as a starting point, but it truly does not cover the multifactorial issues that occur with individuals. When someone is labeled, it places them in this funnel where there are specific treatments and directions that can be detrimental. Being treated for the symptoms, feeling better, getting attention did mitigate depressive tendencies—however, various social situations and transitions continued to exacerbate new and puzzling behaviors and physical pain. If we had known this shows up on the spectrum, we would not have placed her in environments where this would appear. 

Part of the failure of the system [for her was] the overlooking of autism, being on the spectrum, as part of her diagnosis—and potentially somatization disorder, where the perception of pain is magnified. At the time, the doctors were narrow in their observations of autism, and that label was reserved for boys. 

Taking the time to slow down and ask what is really going on here never came into play. Here I was, a parent scared and seeing my child in pain day in and day out, and I looked to the experts to help. This was before all the information on the internet, so I had to really rely on the doctors’ expertise. We have so many more options [that we can learn about so much more easily] now, like DBT (Dialectical Behavior Therapy) and biofeedback.

Allowing it to be normal to feel anxious, validating that anxiousness, and observing her as a highly sensitive child would have formulated a very different path for Sophia. 

What effect did that experience have on you?

As a strong advocate for my daughter’s care for so many years—e.g., through countless appointments attended, doing my own mental illness research, finding the right doctors, etc., as she’s grown into a young adult—it became apparent that I had to take a step back, as difficult as it has been. Because we don’t live in the same state and with the isolation due to the pandemic, it has been very challenging to help her with her many needs. Our relationship has been strained at times, and I have had to take her lead in how she desires my support. Sadly, her own anxiety and autistic characteristics have impacted her ability to navigate her own care as well. 

There are times when I was not heard as a parent by the school district and the mental health providers, particularly in her school years. Thankfully [I] found people who would listen and hired an advocate who guided me through the IEP as a state right for every child in need. 

I see that part of the failure of the system was the need for a targeted diagnosis rather than a cascade of multiple diagnoses and the overlook of her autistic traits. As she approaches mid-life, she sees her life as being very limited, most recently due to fear of exposure to Covid, and this makes me very sad. . . . Letting go of how I want things to be different has been a lifelong exploration for me that I suspect will continue. 

My daughter has placed strong boundaries with me from time to time. These boundaries have prevented me from being in her life and helping her. While she has her specific reasons, it nonetheless is hurtful as she is my daughter and I only want the best for her. I have had to understand her communication style and character traits, which come with living as a person on the spectrum.  

I have to maintain hope that she will find providers she trusts who will work with her complex medical and physical challenges, and that our relationship will continue to grow stronger with time.

The post Giving Caregivers a Platform: Chandra, Mother of Sophia appeared first on Mad In America.

Sam Ruck (his pen name) has been part of the Mad in America community for a few years, providing supportive material for others caring for loved ones living with DID. The story of Sam and his wife, Ka’ryn Marie, thrive on the tenets of love, commitment and healing, each of equal footing. Sam has also written a book—he’s looking for a publisher—about his transformation as a good healing companion to his wife. 

Married for 35 years, they come from a devout Evangelical faith that has evolved over time. While they attended different churches in the same denomination, they met while Ka’ryn Marie (also not her real name) was dating a friend of his. Later, they got to know one another at the small bible college Sam attended. Sam knew that she was the one for him. Eventually, her “alters” joined them at church, where they worked to hide them to prevent judgment and stigma. They attended a few different churches to continue their faith traditions and eventually departed altogether to protect her, and to avoid conflict within the community during the shift of viewpoints during the pandemic. While their involvement in being part of the traditional church community has dissolved, their faith remains strong.

Ka’ryn Marie’s DID appeared after they were married, when intimacy exposed her deepest childhood traumas of sexual abuse at the young age of 2. Ka’ryn’s trauma was unbeknownst to both of them prior to their marriage, as a switch was ignited in Ka’ryn when they began to be physically intimate. Avoiding this intimacy and her sense of being uncomfortable opened up old wounds of her sexual abuse by a neighborhood boy. Little girls, or “alters,” began to appear in various forms—and included voice changes, mannerisms, and expressional feelings, which held different parts of her trauma. Other alters appeared as wounded girls from the verbal and emotional abuse of Ka’ryn’s mother, which showed up in other ways and also needed healing. Sam has worked to identify these little girls and alters, recognizing their varying personalities who have needed consistent care, patience, understanding, and healing. 

As these girls have begun to heal, they interconnect with one another, merging with one another to the point that they appear as his “greater wife,” as Sam refers to Ka’ryn. In other words, the ultimate goal is the amalgamation of all the girls, merged into one woman as if the trauma never occurred. 

The early experiences with them prompted Sam to dive into their spiritual teachings for answers and ultimately change, hoping to heal himself through his own therapy and deeper understanding of his reactions and responses to his wife’s challenges. People who live with DID often feel very detached from experiences, or even forget doing something that others have witnessed. There are gaps in memory, and the confusion and stress of living with day-to-day experiences that do not feel like themselves. While people who live with DID have strong internal personality fragmentation, they do not display “multiple personalities,” and the condition is typically hidden from the outside observer. Combining spiritual faith and the practices of Attachment Theory throughout the years, Sam and Ka’ryn Marie have worked diligently to figure out what works for their creative lives outside of the societal norm. 

Attachment Theory is a psychological method created by John Bowlby, a psychoanalyst who researched the effects of the parental bond on infants and children. Attachment behaviors are instinctive responses to the perceived threat of losing the safety and care provided by the primary caregivers. These behaviors and habits determine what type of relationships people have as they grow in life. Children are inherently intuitive to the care they are receiving, even if they do not have the verbal communication skills. Depending upon what trauma may be experienced, children learn to adopt survival-mode behaviors. 

Below are Sam’s answers to questions about his wife, their life together, and their journey toward healing. 

How did you figure out how to help your wife, who lives with DID? 

As I deeply studied the holy writings with which I was familiar, I realized that my highest calling was to nourish and cherish my wife just like I would myself. And our tradition has a belief that “what we are called to do, we will be equipped for that task.” And so as my wife and I began to encounter “alters” and extreme dissociation and all the extreme states which go with it, I had a confident belief that no matter how different, how stretching, how stressful these experiences were, that I would somehow find the wisdom I needed to walk through each experience with her. 

As the other little girls or “alters” began to come out and join our marriage and family, they mostly fronted as little girls under the age of 8. They were so helpless, so desperate for love and attention and for someone to simply take care of them, and so scared and traumatized from the original abuse. I simply knew I couldn’t abandon them no matter how hard it was for all of us. This experience has given me time to work through my own issues while I learned from each of them how to best help my wife and all her alters.

Because my wife’s alters initially fronted as scared and hurt girls, I became a parent to them, comforting each of them. I held each of them and whispered, “It’s ok now, honey. I’ve got you now. I’m so sorry no one heard you crying before. But I hear you. I see you. You are important to me, and I’ll take care of you because I love you and you are one of my special girls.” And eventually, as I simply comforted them as any child wants to be comforted by her parents, the healing which my wife had never gotten originally began to take root in her heart. 

Later we found out these techniques would best be called attachment-theory concepts. And so I studied up on them and began to implement them more thoroughly and purposefully.

How have you applied attachment theory to your relationship with your wife?

Attachment theory recognizes that four basic attachment patterns arise in children up to age 18 months based upon the primary caregiver’s behavior. A securely attached child’s caregiver responds appropriately, promptly, and consistently to the child’s needs and cries for help. An avoidant pattern arises from a caregiver who gives little or no response to the child’s needs and cries for help, discouraging crying and pushing independence. The ambivalent/resistant pattern comes from a caregiver who is inconsistent in his/her responses to the child, swinging from appropriate to neglectful. And the disorganized child often is subjected to an abusive caregiver who frightens the child or is frightened herself. (Wikipedia.)

I had unknowingly been following the key factors of attachment theory as I connected with each girl to heal from their past trauma and integrate with the other “alters.” We worked on strengthening the existing relationships between the girls and shifting their inner working model. I patiently worked to bring them to the outside world, to share their thoughts and feelings, so I could help them heal. I provided a way for them to associate with each other and their inner and outer worlds for comfort. It has been a long road to help the little girls progress along in their “stuck” youthful child-like behaviors chained by the trauma induced upon them. 

I know that attachment theorists are not nearly as strident in their proclamations about the clear-cut categories of attachment in their lives. My progress shifted from an unhealthy attachment to a secure one, and then my girls began to mirror their own patterns as well. 

While my own needs are rarely met by my wife despite my cries for help, I’ve worked through it to become more accepting. I have become my own witness, jumping from various unhealthy attachment styles as she was unable to respond to me. I have also endured my own trauma from this very experience—and the weight of responsibility to care and love her as she is without my needs being met can be an ongoing challenge. I am grateful and lucky to have had a mostly healthy childhood to carry me through to my wife’s healing. The key for me is to continuously work through my unhealthy attachment patterns within myself until my wife heals and can reciprocate. 

Are there any doctors (or other clinicians) who have been helpful?

At the start of our healing journey 16 years ago, I found a woman about an hour from where we lived who practiced an alternative form of therapy called theophostics as well as other modalities.

According to Ed Smith, the Baptist minister who developed it, “Theophostic is a ministry of helping emotionally wounded people to acknowledge and to identify the true source of their inner emotional pain and find lasting peace through receiving personalized truth directly from the Lord.” Through a series of sessions, the facilitator prays with the participant, then guides them through emotions and memory recollections from the events and experiences—which is then questioned to get to the core belief. Once the core belief is identified, the facilitator guides the participant through a reframing process with the support of Jesus.

The theophostic therapist provided it as a free service as a ministry. My wife and I saw her together for a brief amount of time while I was trying to deal with a personal trigger of mine. Once I got healing from that, my wife agreed to continue to see the lady for the trauma she had suffered as a toddler. One week, early on, my wife got lost while driving to her appointment. She was totally lost and had no idea where she was. Her counselor suggested she might have DID like another woman she had helped, and that started us on our healing journey.

My wife spent more than five years seeing this counselor. It was never a relationship from expert to patient, but more like one friend helping another. At times my wife would help her counselor with her own personal issues and struggles. During those years my wife visited this woman, it gave me a chance to deal with my own personal issues, and eventually, as I began to take more and more of a role in our healing journey, my wife moved past her friend’s ability to help.

Why have you decided not to hospitalize or treat her at a residential center? Has she ever been medicated? Was that ever an option? 

It never really even crossed my mind. And I want to be clear to all the family and spouses who went that route that I have absolutely no judgment toward them. I know that’s what our culture dictates, and I would never demand someone do what I have done when it has literally almost driven me to the brink of mental, emotional, and physical exhaustion—repeatedly. I honestly don’t know if we chose the correct route at times, and yet when I read the heartbreaking stories on Mad in America, I know that I kept my wife’s agency and dignity intact while we also grew closer together in many ways.

According to my faith tradition, walking with my wife on this healing journey was my responsibility and privilege, not someone else’s. I was commanded to “nourish and cherish” her like I would myself. My faith tradition is very big on unconditional and sacrificial love for those in our lives. And besides, who else would really do what she needed and walk with her through all the fear and pain from four decades before? Even if we could afford [it], no paid ‘expert’ would ever have the time, ability, or access that I have 24/7 to walk with my wife through every part of life as we heal and integrate those trauma memories from the past into her everyday narrative. From time to time I did consider looking for help after my wife moved past her original counselor, but she was always so insistent on keeping her privacy that I never ended up finding a replacement.

It’s hard. There are no easy or ‘perfect’ solutions, including the one we’ve chosen. My wife and I are still stuck, after 10 years,  to break an impasse with the last “alter” to join our relationship. But we keep trying. We struggle and fight together, and we keep hoping to find the healing that she, and we, need. I hope I’ve become a better, more empathetic and caring man for taking this journey with her because of the manner in which we’ve done it: respecting her agency, validating her pain, fears, and emotions, and engaging her in every aspect of what others call “madness.” We’ve witnessed a lot of amazing things together which most people never get to experience when they take the traditional route, and I hope someday she’ll be in a better place so we can share those with more people.

I would love to see a greater collaboration between therapists, sufferers, and the primary attachment figures of the sufferers, which would be the spouses, significant others, and families. We are the only ones who can be there 24/7 when our loved ones need us. And, if we cultivate a relationship with our loved ones that is based on respecting their agency, humanity, and how they are experiencing their trauma and its effects, we will have access to help them in a way that no one else can possibly replicate. 

Sam and Ka’ryn are hopeful she will recover from her trauma, and all her alters will be merged into one woman. In the meantime, they consistently continue to work on patiently progressing and working together in sickness and in health. To read more about Sam and his journey, you can find his blog, with parts of his book, here. 

REFERENCES:

https://www.mcleanhospital.org/essential/did#:~:text=Someone%20with%20DID%20 may%20 feel,me%E2%80%9D%20experiences%20can%20become%20distressing

https://positivepsychology.com/attachment-theory/

The post Giving Caregivers a Platform: Sam, Husband of Ka’ryn Marie appeared first on Mad In America.

I

n a world dominated by a medical model that often harms rather than supports people in a mental health crisis, caregivers and parents are often overlooked. At times, the medical establishment does not want to partner with parents, especially when the child is over the age of 18. While the person needing help is technically an adult, it is the mom—or dad—who knows them best.

It’s a complex road for people who are in the system as adults but still need advocates. As families work within the system presented to them, and often outside the system, they also find their own, tailored solutions. Everyone’s story is unique and different, while the desired outcomes are the same: to find a path forward, with the least harm and trauma, into a functional, full life, whatever that looks like for every individual. It is a person’s birthright to secure joy, happiness, and a capable life while riding the waves of ups and downs. 

At the center of every parent’s story is a child who deserves more of all those things—a child who often is not seen as a human being, suffering and in need. Who, underneath all the labels and medications, is a multilayered, intelligent person who needs love and support just as much as anyone. There are times when the child does not have a voice—whether it be from other communication challenges, fear because of past coercion, or being overmedicated. To understand those children better, we need to start listening to their parents. This is paramount for the medical professionals in charge, whose job is to comprehend people in their care but who, too often, ignore the voices around them that have the most to say.

So let’s give them a platform. To that end, here is the first in a series of interviews with parental caregivers, both mothers and fathers, whose stories need to be told. We’re kicking it off with a mother, Elianna, who lives in Colorado with her son, Brandon, 34. His many diagnoses and misdiagnoses include autism, complex trauma, dissociative identity disorder, schizophrenia and schizoaffective disorder, and he has been prescribed multiple antipsychotics, anti-seizure medications, antidepressants, and anti-anxiety drugs over many years. 

The interview below has been edited for length and clarity.

What is your child’s name and age? Tell me a little bit about his story and yours.

Brandon was born in 1989 at home in the Colorado countryside and made developmentally appropriate milestones. He excelled in various school settings. . . . In Colorado in 6th grade, he was identified in public school with learning challenges and put on a 504, which was designed to Brandon’s needs. This plan was tailored to his learning and processing differences. This was helpful for him throughout his school years through graduation.

Brandon was only officially diagnosed with autism at the age of 27, when he got a neuropsych exam. I didn’t even know about neuropsych assessments or autism until I was going to see a therapist in Colorado Springs, and she told me to get an assessment before she would work with us. Unfortunately, there was no support for autism or neurodevelopmental disorders when he was in school, even though this was supposed to occur.

He was labeled (diagnosed) with schizophrenia by a questionable therapist, when he was 18, which sent us spiraling into many medications and hospitalizations. Once he was diagnosed with schizophrenia, that cut off any possibility of help in the world of autism. Deep traumatic experiences in his early childhood of an alcoholic father coming and going left Brandon often feeling deep despair. Brandon has been diagnosed with complex trauma and dissociative disorders as well from all of his experiences. 

Can you tell me a little bit about your experience with Brandon and the current medical model?

Brandon has been through numerous hospitalization stays, which have led to an increase of trauma and dissociation and confusion about diagnoses. These hospitalizations were primarily harmful, unfortunately, which made him worse off than when he arrived there. I believe that the antipsychotic medications actually induced his initial psychotic symptoms. [Doctors] often do not understand the dual diagnosis and only medicate, which leaves him incapable of communicating. Because of his lack of communication abilities, they continue to treat him like a non-human, because they don’t understand his multiple challenges. He is safer and better treated at home. 

The first psychiatric hold was in Pueblo for three weeks. I asked the psychiatrist why she was keeping Brandon there. Her response was that he was psychotic. I asked what she meant. She said that he said, “The air is toxic in here.” Well, the air is very toxic in any psych ward, physically, mentally, emotionally, and spiritually. She didn’t understand, and no one seems to understand. Brandon speaks in metaphors, that’s just how he is. He was also sexually assaulted there—however, we were not informed until Brandon returned a year later. This trauma has stayed with him emotionally. 

The second psych hold in the same facility was three months, and they tried to do a second three months, but his lawyer dismissed that. During that stay, I petitioned for legal guardianship, which was granted by the judge in Saguache County. The psychiatrist refused to speak with me the entire 90 days, which was in violation of court order. That time, the court ordered Clozaril, which immediately caused severe side effects including excessive drooling, and neurological damage which looked like balance issues, collapsing, and falling while trying to walk. This took years of healing with natural medicines and treatments that I paid for. And there were several other psych inpatient shorter stints.

More traumas occurred over the years. This caused a lot of harm and further dissociation. 

Police brutality is one such trauma. In 2019, we were driving with a cracked windshield and were pulled over by an individual rookie highway patrol officer. This escalated quickly with other officers called onto the scene for no reason. Brandon stayed calm with guns pointed at us. However, they did assault me and took us both to jail, having not committed a crime. They put us each in isolation and refused to give Brandon his medications, which included three anti-seizure medications. This was a dangerous, life-threatening situation.

The next day, they threw us out of jail with no money and no vehicle, which is Brandon’s safe place. The police showed up and Brandon walked away. Subsequently, the police chased him down while walking down the side of the road. At one point, there were three cops on top of him all at once—and one of them slammed his head repeatedly on the pavement and punched him with his fists. I didn’t even see what the cops had done to Brandon’s head until a couple years later, when my lawyer showed me the video tapes and made me watch them over and over and over and over again, at least a dozen or more times. It was horrifying. 

This may also have caused some brain damage and a traumatic brain injury (TBI). However, the doctors don’t seem to think that’s important and have refused to provide proper testing to diagnose and treat, like they would a “normal” person.

Many of Brandon’s psychiatrists over the years constantly accused me of not following through with medication regimes, because I don’t agree that they help—because Brandon does not improve or act normal when taking medications. So they conclude that I must not be providing medications. And I also feel that the antipsychotics cause more harm than good.

Being alone and in fear for my child’s life puts me in a position of being emotionally charged, and this backfires for me. I am still learning how to regulate my own nervous system so I can be there for my son, but when I’m the only one fighting for him, it can be frustrating and enraging and extremely tiresome. My focus now is to learn how to use my words wisely and non-offensively, and to figure out exactly what it is I want and I’m asking for. I’m stuck in the past of all the things that went wrong, and that keeps perpetuating itself until I decide I’m done with the past. 

When have you not been heard and what did you do about it? 

Multiple times I have not been heard and been told I am part of the problem instead of the solution. Every time Brandon begins to work with a doctor or is in the total care of others, he becomes worse. While I believe his medications have made him psychotic, I still give them to him because his behavior can become dangerous and life threatening. For example, last time, he started throwing things everywhere and breaking things recently before his current hospitalization. 

Consistently, many of the psychiatrists do not listen to me even as the legal guardian, nor do they question me to get accurate information. Instead, they decide that I am the problem. They despise my questions and, even more, my knowledge. They are often insulting and evasive. Recently I’ve needed to obtain medical records, and [I’ve seen] the massive amount of inaccurate information, beginning with the claim that my son’s father and uncle were schizophrenic—therefore wrongly confirming a genetic basis for schizophrenia. . . . Unfortunately, this has led to my son’s decline mentally and emotionally over 16 years due to wrongful diagnosis and failure to properly treat his symptoms.

I have attempted over the years to get Brandon’s medical and mental health records modified to delineate truthful information so Brandon can be properly treated, however, they always refuse to change anything. So I just continue telling our true story to one person after another, hoping to eventually find someone who listens. I’m still working on this. Also, keeping better records is necessary and helpful.

Various people do not believe Brandon to be schizophrenic, but once he got in the medical system and labeled, it followed him—and the various medications continue to make him worse. He has been on Prolixin, Valium, Depakote and Trazodone. I took him off the Trazodone because he could not sleep and took him off the Prolixin because he was vomiting, and then realized it was the Depakote after all. The Depakote has a black box warning and causes liver failure, and while he was going through withdrawals I couldn’t find any psychiatrists, doctors or naturopaths to help. 

Since Brandon was first medicated, I believe that it changed his brain and now it seems that he requires medications to stabilize. The antipsychotics cause so many issues including daily vomiting, weight gain, bad dieting, [and] no exercise, which contributes to a diabetic condition and dangerously high cholesterol levels and heart conditions. I was titrating him off a black box warning drug which causes liver failure, and he was going through intense detox symptoms. They make these drugs so that it’s really hard to titrate. This one drug is an extended release, so I couldn’t cut it and had to cease too quickly, at the end which caused severe reactions.

The psychiatrists won’t help, and neither would the naturopaths when the symptoms are this severe. However, the new supplement regime was helping him wake up finally. And just as he was almost over the hump, Brandon was walking alone without a shirt on a warm sunny day, and “they” snatched him and locked him away as if he was a criminal. Mental health and Adult Protection Services have been plotting for a while to institutionalize Brandon. Instead of providing the services that he needed while in the home, they instead focus on blaming and destroying me, projecting their failures.

Time and time again Brandon, a young man with developmental disabilities since the age of 12, has been stripped of everything familiar and safe to be put in situations of intense trauma. 

They court ordered Brandon to do ECT, without my consent as legal guardian, which is an invasive and dangerous procedure and which will not make him “normal,” and they don’t seem to understand. He needs and wants to come home now. He asks me everyday for over 2 ½ months: When am I coming to get him? If this treatment helps a little, I am willing to take him for follow-up, absolutely. And if it’s not helping, then I will continue with his current medications of Valium and supplements along with alternative treatments–like ​​diet and nutrition. I have found that carbohydrates and sugars can contribute to psychosis. I provide healthy simple foods, herbal teas, essential oils, yoga, supplements, essential oils, dance, music, art, writing—[which] cause no harm and have positive effects on Brandon’s health.

What do you want doctors and other clinicians to know about parents striving to advocate for their children? 

First of all, I want doctors and clinicians to understand that we as parents, guardians, family members, and/or loved ones live with severe trauma every day because our loved ones are traumatized. I want them to stop blaming us because we care. I want them to question what they read from past reports and verify accuracy on past medications, treatment and their safety and efficacy.

I want them to understand the fear and terror we feel from being separated from our children, and not being able to provide them with the healthy choices that we provide at home. We need reassurance and evidence that our children are safe. When we ask questions it’s because we love our children. We want you to treat our children as if they were your own children. Don’t treat me like the enemy because I am going to watch my child like a hawk.

What do you do for self care so you can be the best advocate for your child? 

My self care includes weekly therapy, and a DBT (dialectical behavior therapy) group which helps with my emotional regulation, acupuncture, massage therapy, gardening, making nourishing meals, taking walks in nature, collecting plants and making medicines, petting my kitties, playing music, coloring mandalas, and hot baths.

What do you want them to know generally about people in psychiatric care? 

People in psychiatric care can have a wide variety of reasons for their symptoms. One size does not fit all. It has typically been a poor experience for my son and myself, and he often comes out worse than when he went in. 

Because I’m so honest, I tell everything with the presumption that more information will help the doctors make well-informed decisions. However, it actually backfires. They twist what I say, which becomes a completely different story.

What do you believe is a good solution? Where does it start? 

Understanding that each individual is different and complex. There is no one pill that will fix every child. It is multilayered and multidimensional, and each individual needs tailored care. 

My son has good care when he is at home. He has a caregiver program, so he gets one-on-one attention several hours a day, and he has specialists to provide healing with acupuncture, massage therapy, craniosacral treatments for TBI, and herbs and supplements to support healing. At home he has these people he knows and trusts. His home, his animals, his gardens, his friends, and more are all really important to a smooth and calm flow of his life because of Brandon’s severe issues. The dissociative disorder requires very specific therapy that is not provided at any institution and can take years to work through. Yes, he is very complicated. Brandon is my only priority in life. God gave me this beautiful child, and he is my one and only primary commitment in this life, to keep him safe and to provide the best possible care and love. This is my commitment.

The post Giving Caregivers a Platform: Elianna, Mother of Brandon appeared first on Mad In America.