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.
Lost and never found so often describes the life of the chronically mentally ill. It can apply to their lives as well as to their personal belongings. One of the hallmarks of the mentally ill is that they seem to be unable to hang onto their possessions and are incapable of “thinking” in logical terms the way a “normal” person would. They are unable to think past the day, not thinking of the consequences of their actions. They drift from situation to situation, on or off their meds, sometimes homeless, sometimes working, sometimes in jail. There is no predicting what their situation will be from week to week, or day to day, and sometimes moment to moment. It is agonizing and infuriating all at once for the person who desperately loves someone in the throes of mental illness. I’m not talking about garden-variety neurosis (many of us are neurotic, in some fashion) but the gut wrenching, all consuming, disease of psychosis, such as schizophrenia, where rational thinking is impossible. It is a never-ending merry-go-round where you are always waiting to exhale; where when the phone rings, and you see the area code, you hold your breath and say a silent prayer before answering—wondering out loud, “What Now?” It is a world where no matter how many clothes or personal items you buy or send them, these meager possessions will disappear into thin air eventually. It is a world where they live in fleabag motels, and when they end up back incarcerated, they don’t think to ask anyone to store their belongings, so everything they had acquired (when you thought they were making progress) is lost, yet again. It is a world where there is no monetary limit to what is lost—be it clothes, phones, and even cars. When I remember that a diagnosis of mental illness does not define a person and that mental illnesses are brain disorders, I am more tolerant. But, often it is so hard not to be angry when your life is continually disrupted and have the anger turn to guilt at even being angry. We are all human and must give ourselves the grace to be so, which means accepting the emotions that are elicited from the constant stress of either waiting for the “other shoe to drop” or dealing with a current crisis. The definition of “insanity” is “doing the same things over and over and expecting different results.” The average person learns (eventually) that banging your head against the wall over and over will give you a concussion and maybe they should not do it anymore. But the chronically mentally ill have short-term memory and seem to be doomed to repeat the same destructive patterns over and over. It is just so frustrating to see this happening, and be powerless to change it, just waiting around for the next crisis. It is a never-ending battle that just cannot be won and it is so heart breaking because you see the train wreck coming but you can’t get out of the way.
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.