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When a parent dies, you lose your past; when a child dies, you lose your future. - Anonymous
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Mona Daniella was loved very much, and she was a wonderful person. After years and years of misdiagnosis, she came out a shell of what she was when she first went in for treatment in 3East in McLean Hospital. She had depression but she was a bubbly person, full of life. All her friends from McLean Hospital, from other treatment centers, hospitals, college, choirs, and other activities have told us about how she was the one who gave them more support to go on than they gave her. She helped and kept telling them not to give up, to keep going on. Her friends have told us was a role model for them, because she had survived the worse, and she was resilient.
We would like to remember Mona the way she was before she had gone into what is considered one of the prestigious hospitals , known as the "Ritz Carlton" of psychiatric hospitals in America. We were also strongly encouraged to write about it, in the hope that it might help prevent what happened to her to other patients. HIPAA Laws need to be changed. At least when it comes to people with mind-brain illnesses, most commonly referred to as "mentally ill" patients. Parents who pay hundreds and hundreds and hundreds of thousands of dollars for their children's treatments are completely left in the dark. The vast majority of parents don't find out about what went on unless their children tell them. Doctors and institutions use HIPAA laws to their advantage, "Psychiatry possesses a built-in capacity for abuse which is far greater than any other area in medicine." (Medicine betrayed: the participation of doctors in human rights abuses. Zed Books 1992). There is no accountability; in America mentally ill patients have less rights than chimpanzees. They have no rights. No one believes in them. When they attempt to say something, their treaters say they are delusional, or hallucinating. After all who will people believe in? "Prestigious doctors", "highly recommended", and "talented" with their degrees, who published books and articles or mentally ill people whom they drug half the time? It happened to our daughter Mona. Mona has always been terrified of state institutions. In state institutions, there has always had rampant allegations of abuses, of extreme poor conditions - unsanitary and overcrowded conditions, lack of communication to patients and family members; physical violence and sexual misconduct and abuse, inadequate complaints mechanisms, fear and humiliation in the misuse of seclusion, over use and abuse of ECT, psychiatric medications and other treatments / punishments, interrupted lives and lost potential, and continued stigma, prejudice and emotional distress, acute trauma and PTSD. Sociologists and others have argued that such institutions maintained or created dependency, passivity, exclusion and disability, causing people to remain institutionalized. (Medicine betrayed: the participation of doctors in human rights abuses. Zed Books 1992). We had promised Mona we would never send her there. We knew it would have meant a death sentence. Once one of her treaters told her she was going to send her to a state institution, and she better sign the form. She had called us frantically crying, frightened, and told us what was going on. We asked her for the name of that person. When we called the person, she laughed, and dismissed completely what Mona had told us by saying she was "delusional and hallucinating". Mona didn't lie. She wasn't delusional and hallucinating either. We told her to hide that paper, and give it to us once we would be there. We dropped everything, and drove for nearly 5 hours to the hospital. When we arrived, we saw Mona, she gave us the paper, and I put it inside my bag. We had a meeting with the director of that unit, together with that treater. The treater was surprised to see us, she didn't know why we had come since she had told us on the phone that Mona was "delusional and she was hallucinating", and she hadn't told her anything about signing any paper. When I pulled that paper from my bag and asked "Am I delusional and hallucinating too? What am I holding in my hand? Is this an illusion, an hallucination?" She turned white. The director apologized and took Mona's case. Despite being treated for hundreds and hundreds and hundreds of thousands of dollars - in a private hospital in Belmont, MA - considered one of the prestigious hospitals , known as the "Ritz Carlton" of psychiatric hospitals in America, Mona went through hell. There was lack of communication to us, her parents. Her treaters used the HIPAA laws to their convenience. They never told us what was going on, which we are still earning piece by piece. But they weren't shy to trash her, to tell us how "difficult" she was. To begin with, had they not misdiagnosed Mona, had they not given her the wrong treatment for years and years in a row - Mona would not have been a "difficult" patient. She would have been alive today. In fact it was the worse treatment for her condition - OCD, as per the team treating her before she committed suicide. My point being, patients with mind-brain illnesses - referred to as "mentally ill" patients have no advocates. More often than not, their treaters get away with everything. Doctors treat them, or mistreat them, without impunity. The doctor who treated our daughter this prestigious hospitals , known as the "Ritz Carlton" of psychiatric hospitals in America was promoted to be the Director of that unit despite the gross mistakes she committed when treating our daughter. Those mistakes led Mona to continue to receive the worse treatment, which made her condition even worse - that is why by the time she left the hospital, Mona was a shell of herself. Although initially we were hesitant, we decided to add ha page about mind-brain illnesses, to raise suicide awareness.
Mona was an staunch activist for this cause, among others. Mona has been invalidated for years and years; we will not invalidate her in death. Mona wanted to live, to study, to have a family, to live a meaningful and happy life. In her last year, once diagnosed correctly, for the past 12 month Mona lived a life. On her own words "I don't look like a mental patient". She participated in several activities. She had romantic relationships. She traveled overseas with a group of strangers, and was comfortable with them - something she could never have done before she was diagnosed correctly; at the airport she told her day this was her first trip in nearly 8 years that was not for treatment. The consequences of the wrong diagnosis, and years of wrong treatment of Mona's mind-brain illness were disastrous, and ultimately took its toll. As all of you know, on September 26, 2016 Mona completed suicide. For those who have mind-brain illnesses, please get a 2nd, a 3rd, a 4th, or more opinions. Please don't follow blindly what "the best doctor" tells you - double check your facts - mistakes do happen; it did with Mona and the cost was very high - her life. Mona did not want to die, she wanted to study, continue to help people, have a family, and have children specifically at the age of 35. She was robbed of her future because of the wrong diagnosis in one of the most prestigious hospitals in the US, in the world. Years of wrong treatment eventually demolished her. Please seek the support of your family, of your loved ones. Should you need to be hospitalized, please allow your treaters to give updates to your loved ones. The HIPAA laws keeps everyone in the dark. Please give permission, sign a consent in front of your loved ones, to make sure your treaters know it. We were kept in the dark about Mona's treatment. Had we known what we know now, we would have intervened. For Mona it is too late - for others it is not. The HIPAA laws only hurts patients with mind-brain illnesses. |
Mona Daniella as a child
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