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.
If only we could pick our families. We could go online to a dedicated site named Design Your Family or Pick Your Family, and plug in specific criteria such as physical characteristics, temperament, personality, interests, etc. There would be almost unlimited choices and we could mix and match until we achieved the perfect combination of traits that would satisfy us.
The possibilities would be endless—parents, siblings, children, spouses, and maybe even friends too. For those who are not computer savvy, Walmart would offer a specific department where there would be a Kiosk. If you did not want to use the Kiosk, you could just find a limited selection on the wall being sold at a discount. Here you would have instant gratification and pay right then and there and take your new family home with you. But, the problem is what do you do with the old models—the parents, siblings, kids, spouses who drive you crazy? I guess you could trade them in for newer, more efficient models—with energy ratings. You can take your old husband who never satisfies you, trade him in, and depending upon how much you want to spend, can purchase the model guaranteed to induce an orgasm every time. No more family resentments, squabbles, or problem children either—all that would be replaced with a blank slate for you to muck up all over again. The beauty of this is that you can trade in your family members again and again so you never have unresolved lingering issues; just trade them in and start from scratch. This service can be expanded to EBay as well. But, an issue is what would happen to the models that don’t get sold, like those poor sweet lonely Christmas trees that are still waiting for a home by Christmas Eve. Where do they go? It is so sad to see them crying out, “Please BUY ME, PLEASE,” and you know they are unwanted.
Maybe that is what would happen to these discarded family members. And how about me—what happens if I get traded in? We’d all live in fear that we’d be sold in Walmart for a discount. Am I so perfect that my family would want to keep me; I think not? The more I consider the logistics and consequences, the more this idea needs more work and may have to be shelved, but can be revisited in the future. So, for now, I guess I will muddle through with the family God has given me. But maybe I need to get in on the ground floor of this innovation before Amazon picks it up and Jeff Bezos makes even more millions on my idea.
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.
This is my Testimony that I wrote a number of months ago. It has actually been 3 years and 4 months since my surgery but I wanted to post this because I had not done so before:
Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace one of my doctors ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.
Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace my doctor ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.
I still feel like a fraud going to West Town Community Church, as a Jew. But, I am in transition and it is very difficult to determine if I want to be a Jew for Jesus or actually convert to Christianity. I’m leaning towards the former because I am still Jewish and will always embrace my heritage. I am very confused and envy the devout people who attend that Church who are so very sure of their faith. As usual, things are not so clear for me. One thing I know is that I am slowly but surely heading towards God. Believe it or not, I am actually taking the Pastor’s advice to just at least start reading the bible; something I’ve never done before. I grew up in a very non-religious household, never went to Hebrew school, or studied anything at all about religion. The only exposure I had was on the holidays—Chanukah, Rosh Hashanah, Yom Kippur—where I either got gifts, went to Synagogue, or fasted dutifully, but I never knew any of the background stories behind why I did these things. Consequently, I ended up marrying out of my faith. But, even the men I married were not religious and I again continued my ignorance about God, the Bible, and faith. My journey has been very slow and fledgling but I truly believe that I will eventually arrive at a place where I belong. Just like a road race, my “pace” is my own and I will arrive at my destination in my own time. This is my “race”—just like a PR in running where you strive for a “personal record”—I must not compare my “race time” with anyone else’s or feel that I am less than the other person because I am so slow. I must just keep walking forward, not looking back, and moving towards the light.
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.