Ambiguous Loss: I totally understand that concept. I have an adult son who has been battling mental illness for almost 20 years. He has been hospitalized numerous times, seems to recover and lead a productive, relatively “normal” life for a while, only to “relapse”, which actually implies he was ever free of his mental illness, which he has never really been. He is schizophrenic and is now on medication, but does not comply with the things he needs to do to function in the world. It is especially difficult because he lives in NJ and I live in Georgia. However, I have tried to get him into program after program, with therapists, and case managers only to have him reject the help that is freely offered him. He has been homeless for years, yet keeps turning down offers of housing from his treatment programs. I actually wrote about ambiguous loss in my blog, A Woman Speaks Out, back in 2014. When a loved one physically dies, there is a period of mourning that eventually gives way to some sort of acceptance and healing. But when your child becomes, “someone you used to know”, it is particularly difficult because how can you mourn somebody that has not died? It is easy and anybody who deals with a loved one with dementia or especially mental illness can understand this concept. I mourn the adorable boy he was, the young man with promise, the son who was always on the same wavelength with me, the boy with the great sense of humor. I am always waiting for “the other shoe to drop” and wonder when the next crisis will be. I grieve my boy, who I speak to periodically and actually sounds fairly “normal” on the phone. But, there simply is no reasoning with him about anything he does not want to do. It is a constant battle for me to disassociate myself on some days, just so I can have some sort of happiness. I am in mourning every single day and sometimes I wonder how things would be if he passed away. God forbid, but I could grieve and then begin to heal. But then I hate myself for even thinking the unthinkable. When there is ambiguous loss, you grieve the loss of the essence of your loved one; you mourn every single day, some days less then others. You live in a roller coaster world where one day you may get some good news from his therapists and then suddenly there is no movement or he goes backward. One step forward, two steps back and then you often have to start from scratch. This happens over and over with no relief in sight. You cannot talk to most people about your “loss” because they do not understand. You cannot constantly bombard people with the latest horror story because they do not want to hear it. You have to put on a happy face, when underneath there is about 20% of my brain that cannot ever, ever, be happy. There is that part of me with a broken heart that I have to hide lest I be considered a “negative” person. And then there is the loss of hope—the feeling that nothing will ever get better. That hopelessness is deadly because it leads to depression on my part. I know that acceptance is the key to everything, but this is often a bitter pill to swallow and it is hard to accept that your child is gradually disappearing before your very eyes.
I dive in after my little boy who has fallen into the ocean, frantically calling out to him, “Baby, baby, where are you?” I spot him underwater, slowly sinking, and I swim toward him, extending my hand, “Baby, baby, grab my hand. PLEASE GRAB MY HAND!” He stretches his arm out toward me but doesn’t quite reach me and continues his slow motion descent further and further down. I call out to him again, “Baby, PLEASE GRAB MY HAND”, and he makes one last try, and almost makes it but just as his fingertips barely touch mine, he slips away. As I watch helplessly as he descends deeper and deeper into the ocean depths, a sense of hopelessness and total remorse engulfs me, realizing that I can never save him. Then I wake up.
I am attached to my son. I am he and he is me—we are one and we always were. We are attached surely as if our livers, or lungs, or hearts were in the same body. I feel him and I cannot separate myself. I know for sure that I will not survive if one day I get the phone call that I have been dreading for so many years. I will cease to exist, if not physically, but spiritually—my soul will surely die and time will stop. I wonder why God puts people in the world for suffering while others live a charmed life. I go through each day, trying to become a “Lasagna noodle” and I am sometimes successful. But, alas, that serene state never lasts because I cannot get the vision out of my mind of my child, being shunned by everyone, alone, and looking like the Unabomber, hoody, sunglasses, and surgical mask, trying to navigate the world—running from all the entities chasing and trying to kill him.
Mental illness has taken his soul just as if he were a victim of a Body Snatcher—for he kind of resembles himself, but his essence is gone. He has become “someone I used to know” but don’t anymore. I can fool myself on some days and sometimes when I am at Church I can pretend in my daydream that he is sitting right beside me, worshipping God and feeling the rhythmic beat of the Christian Rock band. I can daydream that he is OK now and that he is back in his right mind. A sense of peace and serenity surrounds me and for a short period of time I can actually believe that anything is possible and I have hope again. But then reality creeps back into my world and I know I am powerless.
Today I have come to the realization that I can never save my boy—only God can. Unlike when he was a baby, he is a grown man and I have no control in his life. Although I had that dream so long ago, I can still remember it because it never felt like an actual dream—more like a premonition. I can pray and hope that one-day the stars and the moon will align and somehow he will be saved. But realistically I do not feel that will ever happen although I still hold out hope; when you lose hope that is the end and I am not ready to accept that yet.
Ambiguous loss can take many forms, and is very different from a physical death.
Last week I attended a funeral of a 23-year-old young woman who was the daughter of a former co-worker. I have always felt that there is no greater tragedy than the loss of a child—hands down! This was a sudden death, due to substance abuse, so nobody was prepared for the loss. My heart ached for her because I felt, “There but for the grace of God, go I.” But as sad as this was, the family is hopefully able to eventually “move on” after the grieving process (which doesn’t completely end). But what happens when your loved one physically disappears such as with a downed airplane, MIA, kidnapping of a child, or any situation where they disappear with no trace?
Ambiguous loss is just what the name implies. There is no official cause of “death” because you don’t know if they are alive or not. There is no body to mourn. The family is left in limbo, knowing nothing, not being about to grieve, wondering each day where they are, or if they should give up or hold out for hope. And, sometimes against all odds, that lost child turns up alive, so they never want to truly give up, but at the same time, how long do you hold out? It is a terrible existence where you cannot truly grieve or move on. But, another type of ambiguous loss, which most people don’t think of, is watching your loved one descend into the black hole of dementia, or mental illness. In every sense of the word, you have LOST them, if not physically, but their essence—that thing that makes them them—is gone. In the case of dementia or mental illness, the loss is gradual, until they become “somebody you used to know.” It is like invasion of the body snatchers, where they sort of look like your loved one, but have been replaced by a stranger. You can’t really “grieve” in the traditional sense because they are physically alive, but they are not the person you loved. In the case of mental illness there is always HOPE that they may return to “normal” with medication, but either way, acceptance and faith plays a huge part in continuing to go on. I do think ambiguous loss is harder, in some ways, because there is never an actual end, so you can never have a new beginning. You are always in a perpetual state of uncertainty, wondering, and never knowing how to feel.
Mass killing; I watched the News with horror about yet another rampage from a severely mentally ill young man. A father of one of the victims gave an emotionally charged interview and said, “When will this stop? When will we say enough is enough?” My answer to him was, “Probably never.” Welcome to the 21st Century, where mass killing has become almost commonplace; where we barely blink an eye when we hear; where once the dead are mourned, it becomes business as usual. It seems that every other week there is another mass killing. Then the News agencies have a field day, trying to come up with a motive, and rehashing it over and over. Yet, nothing changes, regarding gun laws or the available treatment for the mentally ill. I don’t know what the answer is because unless you can keep someone in a hospital for a period of time, against their will, they will not get the help they need. In this case, this 22 year old was a child of privilege, who had been receiving mental health care since age 8. But I know that unless someone is actually self-aware and admits that they are mentally ill (which most people will not) and is compliant, they will not take their meds, or even seek treatment, which is key. When someone is an adult, they are not obliged to continue their treatment and so often refuse and go off their meds. In all the recent cases of mass shootings, the news media always plays Monday morning quarterback, analyzing over and over how all the “warning signs” were missed. Then they all discuss how the mental health care system is broken, and needs to be fixed by identifying when someone is in trouble and potentially violent. But, since mental health care is a low priority in our society, violent people often fall through the cracks. The problem with the mental health care system is such that when a severely disturbed person is sent to the ER and “evaluated” by an overworked psychiatrist, the “red flags” are often missed because they are often very adept at “acting” their way out of staying. They know all the right words to say in order to appear “normal”, and voila, they are magically sent back out in the world. I know that if they don’t appear out of it, or disoriented, they will be released within an hour. It is a shame when a disturbed individual is a danger to themselves, but even worse when they are potentially violent. I know that deputies interviewed this young man and without real proper training or checking his house, deemed him not to be a threat. Yet, the fact that his parents were so alarmed to even call the police should have been reason enough to take him in. But, true to form, he put on the “act” and seemed contrite, polite, and even shy. It is a shame that family members’ hands are tied because of the HIPPA laws. Once your child is an adult, you may know for sure that he is in trouble, or even headed for a violent outburst, but you cannot do anything about it other than send the cops out, who are not trained in that capacity. I do know for sure that there is so much prejudice and misinformation out there, and maybe education is the answer. People equate violence with mental illness, when the fact remains that most mentally ill people are NOT violent and more often than not, they are the victims. The tragic fact remains that this young man, who had a powder keg working, fell through the cracks and 26 innocent lives were snuffed from this earth. However, I feel such sympathy for this young man’s parents who I know are totally devastated and probably did everything possible to help him. But, the problem is that you can only do so much for an adult child and anyone with a mentally ill loved one can relate to the anguish of his parents.
Invisible people exist all over the world. My friend commented on my recent post about older women being invisible by noting this, although this is a different type of invisibility. When I was in Antigua, Guatemala, the narrow streets were lined with beggars, appearing to be either sleeping or motionless, with their bowls waiting for people to drop coins in. I even took pictures, all the while feeling guilty. Everybody would just literally walk over them. But it seemed their assigned “job” in life was “beggar”, and their job description included being as unobtrusive as possible. That is definitely not the case in Manhattan. When I worked there, I encountered the “invisible” every day, in the Port Authority Bus Terminal, the Staten Island Ferry Terminal, the Subway, the street leading up to the bus terminal (40th and 8th). These areas have been “cleaned up” since the last time I was there, but I distinctly remember avoiding the urine soaked stench on one side of the street by moving to the other side. Before the cops cracked down on the homeless, you would be greeted each morning by society’s outcasts, hanging around right outside or even inside Port Authority, begging for money. Sometimes they would come up to you while you were on the line waiting for the bus to arrive, and we would just ignore them, pretending they were invisible. A day never passed that I was not approached in the Subway by a panhandler. Everybody on the train would virtually ignore them, staring right through them as if they were not even there. We all seemed to have an unwritten code that said, “Do not give money to the indigent”, but sometimes my heart would break for someone. I’ll never forget a dirty homeless young man who collapsed to his knees on the subway train, begging anyone to help him, while we all pretended he was not there. I don’t know how other people felt, but I SAW these “throwaway” people and always thought, “There for the grace of God go I” and knew it could happen to anyone, even me. I think the main culprit was drugs, alcohol, mental illness, or most likely, a combination. Where mental illness goes, so does addiction and alcoholism. Not all alcoholics are severely mentally ill, but the majority of homeless are mentally ill and abuse drugs or alcohol as a means of self-medication. I never would have thought that a loved one would fall victim to that exact same fate, but it happened, which shows it can affect anyone even if you feel you are immune. I hope that some of these people came back from the living dead, by getting the help they needed, but I will never know. More resources are needed for the mentally ill, but until we realize that this can and may touch your life, we will continue to see invisible people.
It amazes me how really ignorant the average person is about mental illness. Unfortunately school shootings, mall shootings, movie theatre shootings, etc. has become the norm rather than the exception. The people who perpetrate the violence are most certainly mentally ill, but people don’t realize that the majority of mentally ill people are NOT violent. In the case of the movie theatre shooting in Aurora, Co, I knew immediately that James Holmes was most certainly suffering from paranoid schizophrenia, based on what he did and his overall dazed appearance. I am not condoning what he did, and my heart breaks for the victims, but I couldn’t help but feel sorrow for him as well–especially his parents. I can’t help but cringe when I hear the comments from bystanders that are frankly born out of shear ignorance. One woman commented that he could not have been mentally ill because of the elaborate planning that went into the ultimate shooting. They just don’t know that the hallmark of paranoid schizophrenia is the appearance of normalcy and the ability to carry out complicated plans. I know this first hand from my son. There are many different types of schizophrenia—some, where the person does appear disordered and unable to carry out basic life skills. But, paranoid schizophrenics often appear “normal” and unless you know them personally, you may miss the signs. Often their inner demons of persecution and their personal torture is well hidden, except during a psychotic break. Unfortunately, there is so much misinformation and prejudice concerning the mentally ill, that people are often characterized as “evil” when in reality they are suffering, running from non-existent enemies, fearing for their very life.