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.
Update-DISCLAIMER: This is a story based on a composite of many people-it is NOT MY STORY. It is based on someone I knew but this is NOT ME!!
All you need to do is change everything. But that is easier said than done and it takes so much hard work and I am not sure I want to put in the effort.
What does changing everything mean anyway? I have been grappling with this damn drug addiction for how many years and I cannot, for the life of me so far get a handle on it because maybe I am weak. The draw to obliterate consciousness—to wipe out all negative emotions and painful thoughts is too tempting. But, I will try—yes I will try yet again. I will try to get clean for my child, my family, but most importantly for me. If I don’t get clean for myself, there is nothing.
Well, what is the first step to take? How about changing people, places and things. OK, people—all the people in my sphere are druggies—but they are my friends. How am I supposed to just eliminate them from my life? Well, I tell myself I must do this if I want to get any amount of clean time. How am I supposed to tell my friends that I can’t see them anymore—I just cannot do that, no way. I love these people and they love me, at least I think, or thought they did. Well, what happened when I OD’d last year—who took me to the hospital and dumped me there to die and just by chance was found before the end. If I think that’s true love I am delusional when I look too closely at it. Addicts are just out for themselves when getting a fix, just to ameliorate the dope sickness. The merry-go-round keeps going over and over until that change is made or you die. Do I want to change? Am I strong enough to recognize that the futility of life without any hope or future is all I have to look forward to if I do not take the necessary steps to change? The question is whether or not I want to get busy living or get busy dying—it is my choice.
How the hell did a nice upper middle class kid ever get mixed up in the seedy underground of the drug culture? How did I go from a good girl, with hopes and ambitions, and good grades to a drugged out shell of a person with absolutely no conscience, doing anything to get what I want. How did I become a person with no moral code who would sell my soul to the devil or leave my child just to get my high? I did not have a terrible family; I didn’t have any horrible tragedy befall me, so what is my excuse? But, just like so many other kids in that nice Atlanta neighborhood, I got bored. I needed something to occupy my mind and having so much privilege I became a follower, just looking for the next high. Nobody thinks when they are young, “I want to be a drug addict when I grow up.” It was so gradual that I almost never even saw it coming, a pill here, a pain pill there—trips to the pill-pushing doctor to say how I was sad and couldn’t sleep or cope. The doctor was all too ready to prescribe the latest pain med. But pain pills are so damn expensive and even buying it from the other kids was becoming a drain on my budget. It was just so much easier to graduate to the big H—so easy to get—the greatest high known to man. There is nothing like it—the euphoria is totally unimaginable and I will do pretty much anything to get it—to chase that high to the ends of the earth, only to come down and start the chase again. Logically I know there is no good ending that will come from the life I have chosen, and I did originally choose it, but I am now a prisoner with no choice.
So, what is the way out of this maze I am in—just existing until the next fix? What do I have to live for—the reason for changing must be for me and not anybody else or it won’t work. I know just detoxing in jail or a detox unit is not a solution because it is more than a physical addiction, it is a deep soul sickness and unless I commit to changing my thought process, I will never be free and will remain a slave to this disease. I hate my life the way it is—I have seen my friend OD, my boyfriend die, done morally reprehensible things, and I wonder why them and not me. I can only surmise that they were collateral damage put into my life to guide me in a divine way—to save me. I must pay attention to these spiritual experiences and learn from them because these are gifts from God. If I don’t I am a fool and will be one of those expenditures used as an example for someone else because I just wasn’t willing to take a chance and change.
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.
Luck can be either good or bad and sometimes you can put a spin on something that starts out as horrible luck but becomes good luck. A perfect example of that is being in a catastrophic car accident, but surviving. It was unlucky that you were in an accident, but lucky that you survived. Sometimes something unlucky can result in meeting the love of your life. If you had not been there or gone through what you did, if you had not been in that hospital, or that building, then you would not have been in that exact place at the right time. You’ve heard of the wrong place at the wrong time but there is also the right place at the right time. Maybe one day you decided to just go another direction on your way to work and avoided getting killed. Maybe you woke up late one morning and missed your flight, only to discover later in the day that that was really the luckiest thing that could’ve happened to you because you missed the crash. I was sure lucky that I decided to go on vacation during the 9/11 tragedy since I worked there. Luck and bad luck are fluid—they are constantly changing because what you consider to be an unlucky event may turn out to be the luckiest day of your life. But is it really luck or divine intervention? It all depends on what one believes but I like to think that all good luck is a blessing and something to be thankful for. Then there are some people who always seem to be lucky, or so you think.
You know those people—the ones who are lucky in love, winning money, or great job. You get those people who win the lottery more than once but can’t handle the consequences and responsibilities of having more money than they are equipped to handle. They change, start living above their limits, destroy relationships and end up broke, and alone. I do believe that luck is not just some random thing—you make your own luck. I hear people described as lucky when they win an award, but in reality they have been working hard to earn that reward. That is not luck—that is skill, talent, and tenacity. To me, pure luck is when you have done nothing to earn your good fortune—lottery, horse racing, or betting on anything. But there are also many people who chase luck as in the case of compulsive gamblers.
My Dad was a person who believed in luck so much that he would spend most every Saturday at the “track” betting on the horses at either of the two racetracks around the NYC area: Aqueduct (the big A) or Belmont. Sometimes he was lucky and would come home as the jubilant big shot, ushering my brother, mom and I out the door to a nice steakhouse. But those were bittersweet memories because even as we were enjoying our night out, I knew that the next weekend could be a totally different scenario. I could never predict what type of mood he would come home in because it all depended on his luck that day. Oftentimes on Saturday evenings, after losing his shirt at the track, he would come home drunk, belligerent, and looking for an argument—it was always a roller coaster. My Dad’s quest for luck sometimes resulted in me, a little girl at the time, fielding phone calls from creditors and telling them my dad was not home when he was standing right near me. I became a liar because of my dad’s unlucky forays into the world of horse racing. My Dad’s obsession with hitting it big required him to have two jobs to support us. Luckily (or rather smartly) my mom held the family together with her job as a legal secretary. I so vividly remember hearing my parents arguing about money through the thin wall of our bedroom at night when my dad came home from his second job. Unfortunately those arguments laid the groundwork for my lifelong phobia of never having enough money and going broke. But it also made me the fiscally responsible person that I am today although I still struggle with a fear of “losing it all”.
The sad part of all this was that no matter how much money my dad won on any given day, he would throw it all back the next week in pursuit of hitting the big one. My parents were always one step away from divorce, but as was the case in those days they just stayed together. Even when my dad no longer went to the track to bet, NYC came up with a new way for people to feed their obsession—it was called OTB (off-track betting) and he just walked down the street to place his bets. Sometimes you have to practice acceptance and just stop fighting and in my mom’s later years that is what she did. She knew she could never change him and just stopped trying.
I have come to the realization that no matter what I do, no matter how much money I send, it will not be enough. Kind of like alcohol for the alcoholic, there is never enough. But last weekend something came to me, something that my friends had told me for quite some time, something that I knew in my heart of hearts—that I just could not keep giving him money above and beyond what we agreed to. Initially, it started out with $100 a month, but that was not enough. Then his dad agreed to $200 a month to be doled out incrementally by me as I saw fit. Of course I would have saved money by giving him large chunks at once, but I knew the money would be gone within a week or two. However, it is usually gone by early in the month anyway, then the incessant, relentless, phone calls start—multiple in one day. Then last weekend I just stopped taking my boy’s calls, not listening to his messages, and deleted them. This has been very difficult to do this, but I know that the minute I listen to him or hear a phone message, my resolve will crumble. In speaking with my wise friend, Janet, she made a good analogy. When I told her that my giving him money relieves the fear, guilt, and anxiety. She said giving him money is like an addiction; the anxiety and apprehension build up and is relieved only when I send him the money he requests. It is a tremendous relief, and I feel better temporarily, but it starts to build again, and the only relief is when I send him money again. Although there is an overwhelming sense of relief, I also have a sense of tremendous resentment, which equals anger. Then the cycle starts again, over and over. Just like an addiction, I needed to just stop this cycle because it is no good for him because he will never get the help he needs and no good for me because I am continually being drawn into his chaotic world. It is a symbiotic, sick relationship. I have to be strong, and I pray to God that this is the right call and will not result in a tragedy because I will never forgive myself. I just have to trust in the Lord that He knows what I don’t and will some day lead my son out of this never-ending maze to a better life.
It is Sunday, and I am at West Town Community Church acquiring some much needed serenity when as usual and predictably, I hear my muted phone vibrate. I hear that there has been a voice message, and without even looking at the phone a sense of weariness and hopelessness descends upon me, blotting out any peacefulness I might feel. I breathe a quiet sigh, since I am now in a meeting about a VBS trip to Jamaica, and silently check the phone number, hoping that somehow it is not my tormentor. But, it is and I barely hear the remainder of the meeting because I am totally distracted. I greet other church attendees smiling and answering, “I’m good today” when asked how I am, all the while knowing that if I actually said how I really feel, their eyes would glaze over and they would politely drift away to speak to someone more cheerful. I am invited to lunch downtown and decline because I am so sick, tired, and troubled that I just cannot focus. I remind myself that we are keeping him alive and at least he is not living in the street, sleeping in a box, and robbing houses to survive. I remind myself that he is much better off now than 3 years ago, but is he really? When does “assisting” equal “enabling?” We have created a “monster” regarding his incessant requests for money. If he put just one once of the tenacity he exhibits in calling over and over and over for money into getting the right treatment and medication, and just doing the right thing, he might actually stand a chance of having something more than a day to day existence. He has absolutely no self-knowledge or insight into the possibility that his line of thinking is totally skewed. I have come to the realization that he will never be OK and that no amount of money will ever be enough because we are just putting a Bandaid on a gaping wound. He will continue to slowing leak blood, even when we think that we have “solved” the problem. He plays “mind games” by asking for a small amount one day, and after you send it he suddenly says that he is about to be evicted, as if he didn’t know this the day before. After screaming myself horse in the car, I arrive at my second home to send him the money that I don’t have to spare in my account. Then he doesn’t call back. No matter what I say to him, he has selective hearing and gives me lip service, saying he understands that he cannot call every few days for money. Yet, two or three days go by and that infamous 609 area code comes up. When I don’t answer the phone, he mounts a concerted campaign, bombarding me with phone call after call, playing the “guilt” card. I cannot continue living like this—being held in emotional captivity by my tormentor. There are days that I want to just let him be evicted and live in the street again. I am tormented by my tormentor because I both love and hate him simultaneously. I love him intensely yet I HATE what he does to my peace and serenity and can’t help resent him. I live in either love, hate, or guilt, never in tranquility because I know that there will never be an end to this until one of us dies.
When I was a child in school, I heard a poem that stuck with me throughout the years, called Richard Cory. Somehow I always remembered it for the message. It was about a man named Richard Cory who was a pillar of the community, rich, handsome, refined, a gentleman, dressed impeccably, and seemed to have the world by the tail. Everyone would see him floating through the town, greeting everyone graciously, and envied him for his wealth and happy life. But the end of the poem is what struck me, even as a child for it seems that one fine Summer evening, he went home and put a bullet in his head. Somehow (and me included) people seem to think that just because you have acquired “stuff” you will be happy. Whenever you hear of a celebrity committing suicide who seemed to have it all, you scratch your head and wonder why. But even if you think you know someone, you never really know the inner workings of their mind and the demons they may be grappling with. Sometimes suicide may seem like the only way out of a seemingly hopeless situation. I think more people than would want to admit it have considered (even fleetingly) at some point in time, that the world is no longer a place they wish to inhabit. But my theory is that it takes more courage to keep on living than to take the easy way out and end your existence. Upon interviewing surviving POWs, who spent years in a virtual hell, imprisoned by the enemy, one thing became clear—that hope and a positive attitude got them through. The people who lost hope died. I know for myself, in my darkest days, if I get even one smidgeon of hope, it will carry me through another day. It is that “one day at a time” concept, so popular in all 12 Step Programs, that keeps you looking for the rainbow in the midst of never-ending rain.
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.
Faith and coincidence can go hand in hand. Many people believe that there ARE no coincidences in God’s world. Sometimes when you look back at how your life has changed for the better, you see a pattern of “coincidences” often extending years back. I suppose that if you look back far enough, you can say everything that you did in your life has lead you to where you are now—even if where you are is not a good place. It’s kind of like a “preexisting condition” in the insurance world; everything is preexisting except for accidents. You don’t just suddenly wake up one day with high cholesterol, or heart disease—no, your body has been secretly sabotaging you for years based on your habits and heredity. It is the same thing in a way with where we are in life. I have recently been exploring religion. Although I am Jewish by birth and heritage, believe in God and pray, I have not really formally practiced anything for years. I had all but lost my faith in God during my nightmarish medical issues and problems with my boy. But, as is often said, “Don’t quit until the miracle happens”, so I did not give up and, continued to have faith and pray, although I had no idea if my prayers were even being heard. Joel Osteen always says that when you are ready, the right person (or circumstances) will appear in your life if you have faith. Yet faith is sometimes hard to have when your life seems like it is a slow slide into the abyss of hopelessness because it is a belief and trust in something intangible. I believe that there were so many events going back to 2002, when I worked in the WTC that has brought me to where I am now. In 2003 I moved to Augusta (where my friend Janet lived)—I do not believe that I would’ve reconnected to faith if I still lived up North. Then, 3 years ago, my son moved in with me, soon after suffering a psychotic break. This sorrow led me to NAMI, where I met Joyce and Bill, who invited me to their Church. Although I did not go back for a long time I just kept praying and praying to God that I would at least find a doctor who could figure out what was wrong with my body. My prayers were answered and to me, it was a miracle. I sometimes wonder if that horrific experience was God’s way of bringing me to faith, for I do not believe that this was a coincidence at all. Although I had no intention of going back to Church, I met Dwayne in Starbucks of all places, who I had seen playing the guitar at the church that one time I went. We struck up a friendship of sorts and he “invited” and challenged me to go back to the church, even bribing me, by offering to buy me a latte if I agreed to go—I could not turn that down. So I have been attending this Church every Sunday, which gives me a sense of peace and tranquility that I almost never feel, even in the face of seemingly insurmountable problems. While there I try to channel my boy, envisioning him sitting beside me, enjoying the music and sermon each week, which is a way for me to feel close to him even if it is not physically possible. I try to believe that God has him in his loving arms and, by having faith I can more easily gain acceptance. At the very least I have begun to enjoy Sundays—something I never did before. I am not saying that my life is perfect, or that I can always practice acceptance, and I am not planning on denying my Jewish heritage, but I feel that through a series of events beginning years ago I have been lead into a belief in God again. Will I take the next step, I do not know yet, but I believe that I am on a good path—that anything that helps me quiet the racing thoughts and worry that engulfs me each day—for ONE day—has to be good.
I am living in the land of Nowhere and it is very frightening. Many years ago, when my two boys were very young, I took them on a car trip to Great Adventure, in NJ. Now anyone who knows me well understands that driving anyplace new is highly traumatic since I have literally no sense of direction. This of course was in the days before GPS technology and cell phones, so I had to rely on actual written instructions and directional skills from my sons too. Miraculously we arrived at Great Adventure uneventfully and met up with my then sister-in-law and her kids. Throughout the entire day, I was extremely anxious about the drive home, worrying that I would get lost (a huge phobia I have). By the time we said our good-byes, it was dark, making it even harder to navigate. Sure enough we found ourselves in a lonely, dark wooded area, with no visible signs, going around and around in circles. My poor children had to endure the increasing panic that engulfed me each time we found ourselves back to the beginning. After many desperate attempts to extract myself from that never-ending merry-go-round, I blurted out that we were officially in “Nowheresville.” At the time, the kids actually thought that was very funny, and it makes me laugh now, but at the time, I was terror-stricken. Now so many years later, I still sometimes get the feeling that I am in “Nowheresville”, sometimes known as “Loserville” or “Lonelyville”, depending on my specific state of mind on that particular day. When I was officially employed and doing “important” work, I didn’t have time to feel like I lived in “Nowheresville.” But now that I am on my own it is an effort to find a reason to “keep on keeping on” sometimes, especially in the morning. I constantly fill my life with all sorts of creative endeavors such as writing, photography classes, blog sites, social media, which creates a sense of peacefulness and purpose for a while, but it never lasts. Years ago I wrote in my journal that the amount of times I felt “good” and “peaceful” was so little that I actually could count them on my fingers, and I think that still holds true to this day. I live in the land of Nowhere, fleeing from the feeling that I am becoming more and more invisible as I get older, that I am alone, that I am becoming less valuable than I used to be, less relevant. Being creative and busy are good things when done for the right reasons. But, in reality, I am still seeking the praise, recognition, and love I never received as a child by filling my life with everything, when I am really running away from my demons. It’s human nature to not remember where we came from and to “forget” what life was like. When my life was a living hell with my medical issues and my son’s homelessness, I prayed and prayed to God to help me, and when my prayers were answered in the form of knowledge (about my spinal tumor) and surgery, I was literally glowing with happiness and filled with gratitude. But, almost two years later, I am feeling LOST again and I don’t know why. Life is a journey, and I know that my wild ride was not in vain because, although painful, I grew as a person. Human beings need to grow to thrive and I am doing just that, but sometimes maybe I need to just stand still and enjoy what I have NOW, rather than looking for the next thing, and the next thing. Maybe I need to just stand still and feel God’s grace.