We have often discussed the side effects of this grief condition, how it resembles PTSD, how it feels like you’ve had some kind of mild brain concussion. Here we want to invite bloggers to describe these visceral effects of grief. What are you experiencing? How are you coping? Or not?
Four years and three months ago, I received the phone call that my daughter, Nicole, had passed away at her dorm while studying at the University of Warwick in Coventry, England. Any parent who hears the news that their child is dead has the same feelings: the bottom drops our of your world and you instantaneously become someone you no longer recognize. Is that my voice that’s screaming? My insides feel like the remnants of a bowl of Jello — melted and waiting to be tossed down the drain. It this nightmare going to end soon?
Depression and anxiety have a life of their own and once they grab hold, you become a prisoner, shackled to something that no one else can see, hear, feel or touch, yet it is so alive — unlike my daughter. I could barely function, and even though I went back to work only a few weeks later (“Oh, look at her, isn’t she doing great.”) I was, at best, clawing my way through the day, doing my best to function. It became so unbearable that I decided to take something that would help with my depression and anxiety.
Thank God the meds worked, and for the last four years and two months, I have been mostly upbeat, productive and a doer. The meds masked everything, even though there were so many feelings pulsating just below the surface, waiting to escape into a corner of darkness where no one could see them. I am in that dark corner now, feeling everything I didn’t feel for four years and three months. Now I want to retreat, stay home, not answer the phone, quit my job and basically tell the world to “f” off.
At this point, no one really cares any longer because, “Shouldn’t she have moved on”? REALLY? I want so badly to tell people just where they can take their “lack of care” and stick it. I just keep hoping it never happens to them. It takes all the strength I have not to open my mouth and say what I feel. I’m so afraid if I did, it would look like a scene out of the “Green Mile” when Michael Clarke Duncan, who played John Coffey, the psychicially-gifted gentle giant, opens his mouth after taking the “badness” from a prisoner and releases it into the air. Darkness surely would pour out of my mouth and anyone within range would become a target.
I ramble because that is what is inside my head today. I need it to stop, but I don’t know if that will ever happen. You see, I don’t want to be this person. I want to be strong, happy and considerate again, but I don’t know how, and grief is a selfish master. Anxiety has its nasty grasp on me and it’s holding tight. Right now I can’t work. I have the strength of a paper doll that could easily float away on the wafting breeze that encircles my cubicle. I need privacy. I need — that’s the problem, what do I need?
As I take a deep breath, it occurs to me that I must be gentle with myself and take the tiniest of steps until I am able once again, to walk, run and skip, dodging the feelings that have engulfed me. Right now I am too vulnerable, but I have faith that a part of me will return once the anxiety leaves – - or at leasts subsides enough so that I can function on a level that will allow me to again be part of society. I know that this journey will always be riddled with pot holes that I must learn to navigate, but I have hope that there will be a light to guide me along my path.
Your grief bleeds off the page, Terri, and I feel it tonight as if it is my own. There are days, still, when my insides scream and I walk in circles, disoriented, dissolved, melted and evaporated. I wonder if all of this is illusion or if I really still exist. Grief throws you into another dimension, a Twilight Zone kind of world. But your final paragraph underscores the importance of self care, the value of being guardians of our own well-being, knowing when enough is enough, putting ourselves into protective custody in order to salvage our sanity. No one will do this for you (us), because as you so wisely stated, everyone thinks you’re doing just fine….they need to know you are OK so they can get on with their lives and in some strange way, be assured that nothing this tragic could ever happen to them. It’s hard for most to sit and stare at naked grief. It’s not pretty or sexy – instead, we tend to view it as ugly, messy, a hideous nuisance. It hyperventilates and leaves us breathless.
We acknowledge those brief moments of self-return, but to be perfectly honest, aren’t we forever changed? There are remnants of the old Armen here, but the raw reality is that I am someone else now. I have just crossed the 8 year mark (although each time the phone rings, the date is suddenly ‘that date.’ But I am finally (on occasion) starting to feel comfortable in my new skin. My eye sight, handwriting, desires, priorities, are different now. A dear friend of mine whose daughter died many years before Alex, reminds me in hush tones and whispers that ‘it gets worse, much worse, before it gets better.’ An Indian woman told me to be aware that as the ice melted from my frozen numb heart, the ache would intensify. At first this scared the hell out of me because I couldn’t imagine ‘worse.’ I was frazzled, walking into walls, most of the time feeling like Betty Davis in “What Ever Happened to Baby Jane,” a crazed woman with streaked, overdone make-up, about ready to fall down a flight of stairs, on constant high alert, wondering not if, but when another shoe was going to drop.
I guess what I’m trying to say is it’s OK to feel crazy. We must learn to live in singular moments. Occasionally the sight of a cloud, or ripple of water, or tree swaying in the breeze, gives you a sense that your child is orchestrating a moment – just for you. When the tide shifts and all hell breaks loose, when we feel like aliens losing our grip, then we must find that safe house, van Gogh’s Cafe Terrace at Night, and meet up. Thank you for sharing your side effects with us. I wish I would have known Nicole. I got goosebumps writing her name just now. Then I said it out loud. Followed by Alex, Rachel. There are so many of them. Of us. And here we are. Sharing the most intimate of thoughts – doing something so many rarely, if ever, do in their lifetime. Masks off. Hearts cracked wide open. In Griefland.
Your words are a soothing balm to my soul. I’m sorry that we have to meet at van Gogh’s Terrace at night, but I am grateful, too, to have someone with whom I can freely share the mixed-up gibberish and pain that resides in my mind, body and soul.
Saying our children’s names out loud: Alex, Nicole, Rachel, and now my friend’s son’s name, Jesse, gives me hope that they are together and surround us daily with their love.
I will share here because you and Nancy have provided me with a safe haven, where the ones who don’t understand or don’t care dare not enter this domain. You are my safety net.
You and I are more in tandem in terms of the time our daughters have been dead, Terri. I lost Rachel in December of 2008, and I believe you lost Nicole the summer prior. What really hit me was the allusion to the John Coffey character in the Green Mile. I have to tell you that image has haunted me since I first read your post. You describe the raw second-to-second experience of this place elegantly, authentically. Never think you are rambling. We Griefland residents do this all the time. That’s why we have this safe house here. Because no matter who we have lost or how they died, there is surreal sense, no matter how much time last passed, of feeling outside of the normal rhythm of life. As though we are existing in a netherworld of confusion, fear, a sadness that permeates every artery, straight to the bone. I still walk into walls, I get lost a lot. I used to think it was just that my spatial skills that were weak, but lately I’ve found myself not knowing where I was going. I look ahead into the direction I was traveling and have to concentrate to get it back. That sense that I know where I am and what I’m doing in any given moment. It comes and goes. I have never gone off my meds,Terri, and I just can’t face doing that, not now. It’s the only way I can be functional. I have to ask you, what keeps you going? When you hit bottom, how do you pull yourself out of it? Or do you? Or is there something, anything, that gives you some support or comfort while you’re down there? At least know, for whatever small comfort this is, that we’ve both been exactly where you are, and even though it feels like it, you’re not alone. You haven’t voiced what this journey is doing to you till just now, and it was a heroic leap, in my humble opinion, but even though you hadn’t voiced it, I knew you were crawling on hands and knees through every moment. I’m just so happy in this one moment that you felt safe enough to let some of this seep out. It’s healthy to do this, Terri, and you’re amongst fellow Griefland neighbors. Nothing you could ever say, do, think or feel is strange here. I feel honored in this one single moment that you opened your grief up, so we can share it with you. Close your eyes, Terri. Close your eyes, and imagine handing some of that darkness to me, and then imagine my arms wide open, accepting it from you. So now we are sharing it, so now you don’t have to lug it all around alone. Keeping you close in my heart today, every day. Wrapping my arms around you right now.
Nicole passed on June 23, 2008, six months and two days before your Rachel passed. I visualize Alex and Nicole showing Rachel around, and then all three of them showing my friend’s son, Jesse, around. I believe their souls are free, no longer tethered to a body that limited them. to this plane.
I believe what keeps me going is that Nicole wants me to move ahead and get on with my lessons. The sooner I learn them, maybe the sooner I will be with her.
No, I haven’t felt safe until now, here, to let my words have a voice and allow them to spill out — unassembled, onto the pages of Griefland. I have been crawling, avoiding, hiding. You and Armen have done so much for those of us who have been afraid to tell anyone exactly how we feel: the depths of the pain, the aching, the nausea, the headaches, the voices screaming inside have now found a home. I enthusiastically accept those hugs you are wrapping around me, and feel my arms respond in kind.
Dear Terri,
So I want to hear more about these lessons you think Nicole wants you to learn. In fact, what have you learned since her death? What do you suppose you are learning now or are supposed to learn from this hideous journey? I’m all ears. You have no idea how much you are holding me up today, too. I nosedived last night (again). I know you know how we have these ups and downs, but I do want to hear more about your lessons. Your words are touching me in the deepest recesses here. xo
Dear Nancy,
I believe that Nicole knows that I must find my spiritual essence, leaving my ego crushed beneath my feet. After all, aren’t we spiritual beings who are here to learn lessons? Our bodies are excess baggage that we must use while on this earthly plane. Becoming more aware of what is going on around us — other people’s dramas are none of our business — we must to learn to disconnect. I have allowed myself recently to get so sucked into the mire of the sickness which permeates the egos of others, that I find myself unable to be effective in any area of my life. I lie here on my couch, trying to write something that is easiy decipherable, but my mind is reeling. How many times do we have to “nosedive” and then pull ourselves up, wipe off the debris that has attached itself to our psyche, and pretend like we’re okay? I wish I had the answers. I wish we could all hold onto each other so tightly that we could wring the feelings of despair down the drain, and watch them spin out of sight. I have just come to the realization that taking myself off of my “meds” may not have been such a good idea at this stage in my life. While it has made me aware of areas where I need to be constantly vigil so that I do not become target practice for those who are more ego-based, it has also shown me that I need the calming effect they have on me. I cannot afford to not function, so will be back on them until I don’t need to be so many things to so many people. In the meantime, I am doing whatever is necessary so I don’t lose sight of me. I will engage again in meditation, which is one of the most important things I can do for my spirituality and peace of mind, and I will disengage myself from people who live to suck my life’s energy from me. I will practice diligently avoiding those people–if conversation is necessary, it will be kept to a minimium and I will protect myself in any way necessary.
I don’t know if my ramblings have been helpful, but it is what’s in my head right now. Just call it “Scary Town,” and please don’t take the exit where you see those neon lights flashing.
With love and light,
Terri
Tell me about your meditative experiences, if you can, Terri. I try this and I must be failing miserably. I am grasping at anything else I can try to stave off another meltdown, which I fear is right around the proverbial corner.
I just also wanted to say that my doctor advised me not to try to wean myself off meds till life is a bit more “stable” again, meaning I’m not doing the Conference with Armen, I’m not in the middle of moving from one state to another, I’m not beginning a new teaching job at South Puget Sound Community College, not launching a new book. His point was that going off meds is okay, but pick your hour. Try to choose a time that is not so tumultuous, so that’s what I’m doing. Just putting this out to you, Terri. Now is just not my time. Maybe it never will be….
I love what you are saying about drawing boundaries with the blood suckers. I know what you are talking about here. I know people who are very well intentioned but they just don’t get that I have limited reserves and I call them emotional vampires. We have to get better at self-care, at taking care of ourselves, because you know what? No one else really does. I’ve said in the book that grief is like managing a degenerative illness like diabetes or AIDS. You know there is no cure, but you can live a productive life if you get good at tuning in to your body, doing what you need to do to take care of yourself, like taking the appropriate amount of insulin. This is where we are. Oh, God, your words are like a balm to me today. I’m fighting it, I can tell the symptoms (don’t we get good at this perverted rhythm?), and I probably need to go with it, let it all happen so I can find that balance again.
For a few minutes.
Nancy and Terri,
I’ve been wanting to chime in but have been blowing circuits left and right while multi-tasking during the past 48 hours. This admission, after eight years, makes me acutely aware that this grief condition has a long shelf life. Today’s kicker was that someone hacked into all of my e-mail and FB accounts. Funny how one little glitch can still cause me to completely unravel. I felt myself starting to teeter, cave. During these moments, my heart races, my arms go numb, I’m very forgetful, disoriented — that out of body sensation. The little voice inside was begging me to run for cover, find a quiet zone, but by then I had so much momentum, the adrenalin was pumping, I found it near impossible to shift gears. The brakes went out and a giant tidal wave crashed over and through me. The meltdowns, as you both well know, are horribly inconvenient and ill-timed. I had doctor appointments with my mother, a big event at work, a presentation I’ve been working on for tomorrow evening, and a radio interview. Sensory overloads are a no-no in Griefland. Like I said at the Conference, we have to learn when to place ourselves in protective custody, solitary confinement – a place where there is no noise, few intrusions, just breathing space. I think the answer is making this a required daily practice and ritual. For many of us, it’s counter-intutive. We simply must unplug, refresh, recalibrate. Let’s make a pact right here and now to help each other, to offer gentle reminders, permission to say no – to the vampires and and anyone else in “Scary Town” who dares to mess with our sanity. Especially the grief monsters.
Armen & Nancy, I am on board with the pact to give each other those “gentle reminders” to say “no” whenever necessary. (It may be necessary, however, to give me a jolt.). Armen, I cannot believe going through the horrendous day you just described. What you encountered was such a violation of your privacy that it would be difficult to keep it together if you were sitting at home wrapped in a blanket, let alone being in a profession where a spotlight is constantly being shined on you. Both you and Nancy hold jobs of such importance–I don’t know how either of you do it, and with such amazing grace. My hat is off to both of you.
I have identified many of those grief monsters and have placed them on my “get-rid-of list”. I have no tolerance for them any longer.
I tried to post this reply to Nancy earlier, but encountered an error. Fingers crossed….
As for meditation, I don’t believe there is a right or wrong way. If you can find ten minutes where you have quiet, uninterrupted time, just be still and try to focus on one positive thought. I start that way, but then my mind bounces from one thing to another, but I always feel a sense of peace when I’m finished. If I have twenty minutes to dedicate to some quiet time, I feel that works best for me. Sometimes I fall asleep, but if I can just quiet the constant chatter I feel successful. Meditation tapes are a good way to go to help you start. Your writing could also be a type of meditation for you. Anything that can put you in the “zone”.
Like a stubborn redhead that I am, I did not consult with my doctor — or anyone for that matter — before weaning myself off. I did not have any major changes going on, but my job is demanding; with no safety net to protect me, I fell hard. People expect that after four years we should be okay. They have no inkling as to the battle that rages in our minds, wreaking havoc in every area of our lives. I know now that until I retire in six years,I will continue with this therapy.
The “emotional vampires” in my life don’t wait until dark. They are of the “workforce” variety and they strike in broad daylight without a thought for the damage they inflict or the carnage they have left, which slightly resembles me. I wave a white flag, hoping they will honor the age-old battlefield custom: I GiVE UP! Grief is a disease that may appear to be in remission, but when it flares up it doesn’t do so quietly. People may not hear the screams that perch perilously close to the edge of my lips waiting to escape, but there is only so much control left. When it gets to that point, I ache to be in my car or my home where I can safely release those screams that I have held far too long. I am not that happy, funny person who people once loved to be around. There are only a few who love me right where I happen to be at any given moment and do not judge me. They allow me the space I need or wrap me tightly in their arms when necessary. Grief has done one thing for me–it has cleared the rubble from my life and left precious gemstones that shine brightly and, like a beacon, guide me when I cannot find my way.
Terri, I am going to try the tapes, which I haven’t tried yet. I need sometimes to listen to just peaceful sound effects, music is stil too much at times for me to process. I love hearing that you are drawing boundaries, and I am, too. Just today I had a situation in which I realized I’d been taken advantage of and disrespected and am taking steps to get myself out of that toxic situation. A few years ago, I might have put up with it longer. Yes, grief has done the same thing for me, allowed me to know who I am more completely, allowed me not to put with other people’s bullshit, or to take abuse. I’m done with being polite or using euphemisms instead of calling things what they are. Along with you, I’m taking today on, one moment at a time, and will make time to scream if I need to later. Know when these moments hit, I am standing right next to you,or pulling up a chair at the Griefland cafe, waiting for your arrival. Let me know if you have a favorite tape you use, and I’ll order it today.
Loving you, Nancy
I just found this site and have ordered the book Grief Land. I have had family and friends give me other books to help me, but as of yet have not been able to really read them; more of a flip through a page and read a sentence here or there. My son, Bryce, passed away in April 2012 from a one year battle with cancer. in reading these posts, I connected with the returning to work and pouring myself into focusing and functioning on doing what needs to be done. Bryce’s dad (my hsuband), his brother (my only living child) and his girlfriend (who I had always hoped would be my daughter–the one I never had) all are on meds to help mask the pain and torture of this grief journey.
This morining I went outside to drink a copy of coffee. It is a beautiful fall morning, colors brilliant of autumn hues and again, for a fleeting second I felt this has not happened, Bryce will be walking up the backyard, game and hunting equipment in both hands…….He loved bow hunting and bass fishing.
I am 58 years old and struggle to think that I will most likely not live long enough to ever get to the grief of stage of being able to enjoy someone’s wedding, the birth of my friends grandchildren, etc. I know you are to deal with today, don’t think to far ahead. I don’t understand this plan of the thing called life. Cathy
I don’t understand it either, Cathy, so welcome to the club. And you and I are the same age, by the way, and this never seems to get any easier no matter how much time goes by. I still have trouble looking at babies, and have only attended two weddings since Rachel died, both of which I left soon after the initial ceremony. It’s hard for me to be at any of these events and not think of how my daughter will never marry, will never have children, will never have a life. Grandchildren, I hear, help us, but what if we don’t have grandchildren? Please tell me more about Bryce, what happened, what part of the country you are from, what brought you to this site. I’m so glad you landed here in Griefland, and hope you find some comfort among others who are here and will recognize you, no matter how you show up. Thinking of you today as you continue contemplating these brilliant autumn colors. I’m in Olympia, Washington, and the maple trees around here are turning red, gold, reminding me that time continues to pass.
Hugs,
Nancy
Nancy,
I came across itthis site reading another post on the compassionate friends website. Someone was commenting on the book and recommended so I went to the link. I read the compassionate facebook postings a couple of times per week, but have never posted. This is the first posting I have done. Bryce is my youngest son and was diagnosed with Osteosarcoma in April 2011- a bone cancer usually in children and young adults. And like most of these cases, was a healthy, active young man and thought he had a ligment/muscle injury from a pick up game of b-ball. Of course would not heal on its own and went to Ortho guy who following office x-rays immediatley order an MRI. The next 12 months were tests, treatments, hospitals, leg amputation, and trying to manage horrific pain. and like most Osteosarcoma it metastized to the lungs. There was no miracle. Bryce died at home at 25 years old on April 16, 2012, the day after my sister’s birthday.
We live in the southernmost part of Illinois so we are culturally more southern as we are 3 hours from Memphis, TN vs. 5.5 hours from Chicago. St. Louis , MO and Nashville, TN are the closest larger cities.
We are a small family-husband, son-blake, my sister & mom. Husband has two siblings. My sister lived on the gulf coast and came back home to help with Bryce. She has no children and her two nephews are most like her own children. I get so sad thinking about how my other son is so cheated. Blake and Bryce were buddies and lived close to each other–enjoyed doing so much together. the day I read that losing a sibling is losing your past, present and future, another part of me dried up. I feel so helpless in trying to comfort him–knowing he will have to work it through on his own, in his own way, in his own time,
I read you lost your daughter, Rachel, in 2008. What happened? Are you engaged in life now or still just going through the motions-or maybe it is a combination of both? Bryce has only been gone 6 months, but the year of watching him suffer so and watching him be delivered nothing but bad news was also a time of immense grief for me–it was watching your child die who was trying so hard to live and being totally helpless. It is good to be able to share with you, Cathy
Oh, Cathy, reading this is taking my breath away, making my heart beat faster. Don’t feel bad about that. Hearing all the stories of all the amazing women we have met on this journey makes me so heartsick, even physically sick — for your poor Blake, for you, for your husband, for Bryce, whose courage and perseverance was more than heroic. Your story makes me marvel all the more at what in the world keeps us going. What is it that keeps you going, Cathy? How do you get through the days? The nights (that are often so long)?
Rachel died on Christmas night, 2008, of a drug overdose. Her shoes were right next to her bed and her cell phone was plugged in. The officer who found her (she wasn’t living at home at the time) said he was sure it was accidental, but when your child is doing drugs nearly constantly, the whole issue of intentionality gets blurry for me. It doesn’t matter anymore. It only matters that she was a tortured young woman, engaging in activities that were life threatening, and that eventually took her life. All I can do now is go on. Her brother, Josh, was very close to her, and he suffers a lot, misses her, but he is finding meaning in life and going forward, whatever that means to him. For me, and perhaps for all mothers, it’s a different story, but then it’s a different relationship, too.
How is Blake managing, and your husband? I think for men it’s so much harder, but would be interested in getting your take on this. Holding you in my thoughts and heart today. And with the holidays rapidly approaching, I hope you’ll write more. It’s a challenging time of year for all of us. — Love, Nancy
My sister-in-law, who lives in California and has been reading Armen’s column in the Fresno Bee forever, sent me GriefLand about two months after the death of my 25 year old son, Daniel. Daniel died on August 10, 2012, of an accidental drug overdose. He was a funny, handsome, charismatic young man who, if you had known, you would have been lucky to know. I can’t stop missing him. We watch videos of Daniel so we can hear his voice and see him move, and we long to turn back the clock. I attribute my current phase of “survival” in this horrendous nightmare to the compassion of my large, close-knit family. I have 4 sons, Daniel being my 2nd oldest, a husband that I luckily call my best friend and a sister who also lost her son, Shawn, (in a car accident) almost 12 years ago. We have all landed in GriefLand, unprepared for this treacherous journey. It makes me sad beyond words to know what all of us lost that morning that Daniel died. If I could have fought the battle of this drug addiction for him, I would have done so without a thought. We supported him through rehabs and prayed constantly that he would be strong enough and lucky enough to survive. I watch my sons grieve for their brother, their friend. Daniel was living at home when he passed away, under tough love conditions. This almost makes it harder for each of them to accept this loss…and their loss is deep. Nick found Daniel, still breathing, lying on the floor. That moment, the sound of my son’s distressed voice, will forever be engrained in my thoughts. He gave Daniel CPR while we waited for what seemed an eternity for the paramedics to arrive. All of us together begged God not to take him yet…..and then we held his hand at the hospital when they called his time of death.
Your book, the words of Nancy Miller and Armen Bacon, have brought a voice, words to describe how I feel. I quote your words all the time to anyone who wants to listen. I share them with the people who loved Daniel in the hopes of helping them realize that they are not alone. For that, I want to thank you. I also have 2 friends who have both lost their sons, both friends of Daniel. One of them passed away 6 years ago in a car accident. The other one only a few months ago. I will recommend your book. I read GriefLand and did not want it to end. I am re-reading it and highlighting my favorite parts. I will pass it on! I promise. In the meantime, keep us in your prayers. We have my oldest son’s wedding on December 31 of this year that Daniel, as one of the best men, was planning the toast to Nick and Tina.
On this first day of December, Carol, as we hit the holiday season and your son Nick’s wedding, and as each hour of each day is weighing on you like a heavy trunk on your back, know that you are not alone on this journey. My son sent me the most inspirational and life affirming link to a Ted Talk lecture, that I want to pass along to you today, and by all means, keep posting here as the spirit moves you. We always keep the porch light on in Griefland, for anyone who can’t sleep or who is crawling through the hours on hands and knees. I wish I had had the privilege of meeting your precious Daniel. He sounds like such a witty, charming and handsome young man. My heart is aching with yours right now. Here is the link to the lecture. I hope you find some comfort today in listening to it:
Janine Shepherd: A broken body isn’t a broken person
Love,
Nancy
That link may not work, so try this one!
http://www.ted.com/talks/janine_shepherd_a_broken_body_isn_t_a_broken_person.html?utm_source=email&source=email&utm_medium=social&utm_campaign=ios-share