Walking In Darkness in the Light of Day
By Linda (Rippee) Privatte
Darkness comes in many forms. It is the partial or total absence of light, and metaphorically, darkness stands for apathy, pain, oppression, depression, degradation, and evil, while light stands for intelligence, purity, and enlightenment. To most, we look forward to the restful sleep and peace that the darkness brings at the end of every day. Sometimes the darkness is just a lonely night. Sadly, darkness can also mean a lack of sight.
Recently, the day came for our brother to be discharged from the hospital after 258 days after he was hit by a car while walking into traffic in September 2019 and then by another car in February 2020. His recovery was exceedingly long due to the extensive injuries he sustained but the doctors once again pieced him back together. He had a rod that had been in his leg since the original motorcycle accident that also took both his eyes and 1/3 of his frontal lobes due to a massive traumatic brain injury 33 years ago. He has had over 60 surgeries since the original accident. 24 of which were surgeries to remove more brain matter from brain abscesses. These last 2 accidents nearly crushed an already broken man. When he walked out of the hospital door it should have been a celebration.
But he walked out alone with the clothes on his back and a clear garbage bag with his discharge papers, 3 months of 9 different medications, and a cell phone we had sent him. And he had survived once again. He needed to be released with a walker but refused and was given a cane. He cannot manage with a walker because he cannot tell what is coming up in front of him. The cane is barely supporting his weight and he had only walked short distances after his leg had been crushed and broken in several places. The original metal rod had to be removed and more metal put in to save the leg. He lost the use of one shoulder and has no range of motion nor can he carry any weight. He is now more physically disabled than ever before. He is 100% blind.
He also has serious mental illness along with anosognosia that has been untreated for over 3 decades. He has been homeless for 13 years. Although he was physically healed enough to leave the hospital…our laws do not allow for any intervention to address his brain disease. We had tried many times. So, once discharged to the streets, he headed back out to the same street where he was recently hit by cars twice after walking into traffic. As a family, we were told we cannot intervene with any involuntary treatment. It matters not that he has disabilities, partial loss of his frontal lobes, and depending on which opinion - has Schizophrenia or Schizoaffective/Bipolar Disorder with Anosognosia and of course, is blind. He is walking in darkness in the light of day and the sun may be shining on others, but he is always walking down a dark road. It led him back to the same road where he continues to walk into traffic.
The road Mark was hit by cars twice and many near misses reported by citizens and police. After 13 years of homelessness and untreated for his serious mental illness - his fixed delusions will always bring him back to this street.
He is physically and mentally lost in the dark. The darkest place might be his own mind when serious mental illness controls and attacks his brain and locks away his soul. It is darker than his total blindness. No treatment is within his reach when his brain tells him to say” no” to all offers of help. His brain disease speaks for him. It tells him he has no mental illness; nothing is wrong at all. Darkness is a lack of knowledge or an unenlightened state. Darkness is grief, hopelessness, and despair. Darkness can be evil, immoral, or grossly unfair. Darkness is discrimination of an illness where treatment cannot be found, and one is criminalized for having that illness. One is punished for being sick and one must harm himself or someone else to meet the criteria for involuntary treatment. He sinks deeper and deeper into hopelessness, fear, and despair. How much darkness can one man carry in his life before he is lost in the abyss?
Our mental healthcare system delivered our brother back to the same street that has betrayed him over the years. He was transported from the hospital to the street in front of our local county building where he was supposed to be met by a social worker. He sat outside that building for 2 days waiting for the social worker who never came.
At some point, someone told him he had to leave that location. I found him two days later and he directed me to a place he said was safe. It was a dumpster behind a business. I panicked and I knew it was not safe! I begged him to let me take him somewhere else. He insisted that he would stay there, or rather his mental illness decided as it decides everything in his life.
Legally I am told I have no authority over him. I have been told by our laws and all officials that I must walk away. I must let him decide things even without the capacity to do so. It does not matter that he has a brain disease and does not even understand that he is seriously mentally ill due to the anosognosia, which is "Lack of Insight." I had to abide by his decisions. I had to leave my brother where I knew damn well, it was not safe! Our society is hell-bent on protecting his rights to die on the streets but will not protect his right to live and be treated for a medical condition.
He is walking in darkness in the light of day as we try to follow him in the shadows. It has only been a couple of weeks since he left the hospital. The night I left him behind the dumpster he went missing under suspicious circumstances. An “At-Risk Missing Person” report was filed. He was lost for days and then found. An officer and outreach liaison says they offered him resources, but he refused as he always does due to his serious mental illness. The anosognosia was not considered once again to explain why he needs protection. We will continue to fight for our brother’s life.
The next day after being found he was lost again. He went down a steep creekbank and was unable to climb back up for days due to his new disabilities. I tried to get down that same creek and injured my knee badly. Dozens searched with us until he was found. He was robbed of all his belongings including the medications that he needed. He deteriorated quickly and suffered withdrawals and side effects from a lack of medication. We replaced his clothing and belongings, but they were stolen once again. His guide cane was now broken trying to climb out of the creek. Two days later we replaced his stolen belongings and the following morning they had vanished.
A local citizen had to get out of her car and stop traffic because he was in the middle of the road... again. Yet, another citizen prevented him from stepping into traffic. I personally watched him walk into two parked cars. I spoke with the Mayor of our city and several dozen phone calls were made to Adult Protection Services and to 3 different social workers. Our brother is in hell on earth and we have followed him there searching for new legislation that does not matter to most families or legislators unless serious mental illness has touched their own families.
Darkness can be found in injustice. As a family fighting for treatment of a serious brain disease we are often judged harshly by some in our community for the answers or solutions we cannot find. We too are walking in the darkness behind our brother. The darkness that weighs heavy on humanity. The darkness that is in some hearts is blocking out the light. Yet, people in our society do not comprehend how the laws bind us. My twin sister, Catherine, and I do our best to follow along. Our hands are reaching out in front of us for whatever may come next. Our love for him guides us through the darkness and through the emergencies that come each day.
Consider for a moment, if you had a loved one that was living as our brother does - consider if you were living our lives. We would not wish this on any family but just consider for a moment, please. Our wish is for enlightenment. There is a path to lead us where light would shine more brightly where it is so desperately needed…
Otherwise, we are all walking in darkness in the light of day.
1. Reclassify serious mental illness (SMI) from a behavioral condition to what it is, a neurological medical condition.
2. Reform HIPAA
3. Repeal the IMD Exclusion
4. Provide a full continuum of care
5. Decriminalize serious mental illness (SMI)