Living With Grief

Helping others through shared experiences

Many people can feel alone in their grief, not realizing that others have similar thoughts and experiences. Hear from other people and families about how they are coping and navigating their lives after losing a loved one. We welcome you to share your own stories or articles about living with grief. Submit an article.

A Letter to My Living Children for Mother’s Day

Dearest ones,

Mother’s Day is quickly approaching. Each year, I’ve received beautiful hand drawn cards or beautiful crafts from you that I cherish and save. Your words of love and appreciation are an echo of the profound love and appreciation I feel for each of you. Not just on Mother’s Day, but every day. And yet, you know Mother’s Day will forever more be bittersweet for me, since your sister will never again be alongside you to wish me a happy Mother’s Day.

It has been a very challenging road for all of us since the death of your only sister. You didn’t just lose your only sister and a piece of your innocence that day, but you also lost the mother you once knew. After that horrible day, you had to witness a mother who was crushed by the weight of grief; a mother who still loved and took care of you, but was so often sad or tired or visibly overwhelmed.

I know that for a long time you tried to hide your own pain from me in an effort to not make mine worse. You tried to take care of me, as I often struggled to find the energy needed to take care of you. You helped out more. You followed the rules as best you could. You checked in on me as a parent checks in on their child. I appreciate all of it more than you know, but I’ll always be sorry you found yourself in that difficult position.

Seeing all my outward sadness since her death, it might appear to you that I think more about your sister than I do of you. It may even appear that I love your sister more than you. Nothing could be further from the truth…but I’m pretty sure you already know that. I think you understand that when all we have left of someone is our memories, we may choose to spend more time with our thoughts than before.

I also think you know just how much I am grateful for each and every day that I have to spend with you. I have tried very hard over these past few years to show that to you, and despite the pain – or perhaps because of the pain – we have grown a stronger, deeper bond of love and trust between us. We have all witnessed firsthand the fragility of life, and we are reminded that our relationships with each other – and those we love – are what matter most. That is a wonderful gift your sister bestowed upon us that I know will last our lifetimes.

So if I have tears in my eyes this Mother’s Day, I hope you know it is just the overflowing love I feel for all of you – including your sister – leaking out of me. And while I wish with all my broken heart that she were here with you, it is all of you that help mend that heart each and every day with all the love you continue to give to me. I can only hope you will also feel my love for you each and every day of your lives.

Love,
Mom

Blackbirds with Broken Wings

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.

– From “Blackbird” by The Beatles

Alive-in-Memory-Blackbirds-with-Broken-Wings-smSo begins one of my favorite songs. I’ve loved it ever since the first time I heard it as a little girl: the beauty of the melody; the simple combination of a voice and guitar; the inspiring message of hope – the hope for someone who’s been broken in body and spirit, and has nothing more to lose.

“Broken” is a good description of what I became in September 2009 in the wake of my 4-year-old daughter’s death. My body still worked. My mind still functioned. Out of necessity, I went back to work and back to the everyday tasks of raising three other children… but behind that façade of normalcy, I found myself not just suffering a broken heart, but a broken spirit. I was living in a broken world that had failed to follow the laws of nature. I had become the blackbird in that beautiful song. Unable to function in the world around me in the way I once did.

In my experience, once I became broken in a public way, I began to discover other broken people around me. While I sought some of them out in support groups, I found that sometimes they sought me out. In my local community, it was as if my daughter’s death was a key that had unlocked a door that hid people’s secret identities. Acquaintances I knew – but knew little about – suddenly trusted me with stories of their deepest heartbreak and despair. But why?

In my opinion, we live in a society that idolizes winners and treats losers with disdain. Think of the endless reality shows where we vote for the best and ever so quickly forget those we didn’t think were good enough. I look around and see so many people feeling pressured to show the world they are winners too. They work very hard to try to get the prized job with a big salary. It doesn’t seem to matter that it often means they must sacrifice every last ounce of their free time or family time. I see endless commercials encouraging people to buy things to show their winning nature: big houses, expensive cars, and the latest and greatest technology or gadgets that will cost a small fortune, but be out of style within months. Our societies tend to glamorize the rich and famous, while marginalizing just about everyone else.

In such a world, how could we expect anyone to willingly acknowledge they were broken? I have witnessed first-hand the cruel judgmental attitudes and reactions of disdain or pity – which make broken people feel even more broken. So, I see these broken people do the best they can to put on a façade of “winning” strength to the outside world while desperately trying to tend to their devastating wounds in the “dead of night”.

Back to the question of why these people suddenly trusted me to be witness to their broken souls? If I had to guess, it would be this: because they felt it was safe to. If they were like me, they had learned this basic truth about “broken” people: they can be some of the kindest, most compassionate people you will ever meet.

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free.

What inspires this kindness and compassion? Why do so many “broken” people say they have a new understanding of what is important in their lives? In my personal experience, it is the result of feeling the weight of a pain so cruel and so unbearable it left me with “sunken eyes”. These eyes no longer allow me to see the world in the way I once did.

It took a lot of time and painful effort to learn to see clearly with my sunken eyes. With significantly reduced vision, I was forced to focus only on things essential to my very survival. In my case, it was to focus on love, my relationships with those I loved, on being honest and true to myself, and being free once and for all from the limiting thoughts that kept me tied to the world I once lived in where I never felt good enough.

My reduced vision tends to mostly block out the things I once thought I needed to be happy. I no longer feel pressure to earn as much money as I once thought I should. I no longer see any reason to spend time in a job that my heart isn’t in if it means reducing the precious time spent with my family. It has led me to see that money and material things will never bring any sort of worth or importance to my life.

If I am forced to live the rest of my life without my daughter, I want it to be a life filled with purpose and meaning. My vision is focused on how I can promote my own healing and growth by using my natural strengths and skills to help others. I have found that many broken people I’ve met have the same or similar vision. And in feeling compelled to help others, we tend to develop a new understanding of and capacity for compassion and kindness.

Blackbird fly
Blackbird fly
Into the light of the dark black night.

I am no longer afraid to show the world I am broken. I will sing my song out loud in the dead of night and the light of day if it means I can show other broken people there is hope when they see none. If I can learn to fly with broken wings, anyone can. What is my secret? I have learned to focus less on the overwhelming pain of her death and more on the profound love my daughter brought to my life in her four short years and the unending love I feel for her. That love becomes a beacon of light in the dark black night of grief…and I will follow it wherever it may take me.

What is Strength in the Face of Grief?

“You’re so strong.”

Alive-in-Memory-What-is-Strength-in-the-Face-of-Grief-smIf you’ve suffered the devastating loss of a loved one, you’ve probably heard the phrase. I certainly have after the death of my 4-year-old daughter, Margareta in 2009. But what does it really mean, anyway? What exactly is the definition of strength in the wake of a loved one’s death? Chances are if you ask a griever and a non-griever that question, you’ll get very different perspectives and very different underlying meanings.

When people have told me how strong I am after the death of my daughter – and many people have – they sincerely mean it and mean it in a supportive way. In the early weeks and months after Margareta’s death, it was usually told to me in the context that I’d seemingly reintegrated back into the “normal world”: going to work, taking my other children to activities and events, getting errands done outside the house, etc.

But in their minds, this was opposed to…what? To being so devastated they would surely find me in the fetal position in a corner of my house while hysterically sobbing 24-hours a day? Or maybe it was the relief that I hadn’t succumbed to the continual urges to take my own life – because many parents can’t imagine how they will continue living after the death of a child. I certainly didn’t. Many times I thought the only reason I was still alive was for the sake of my other children – and I’ve heard many bereaved parents say this as well.

Strength, from this perspective, equals stoicism. On the internet, stoicism is defined as, “the endurance of pain or hardship without a display of feelings and without complaint.”

So when did stoicism become the standard definition of strength? I suppose it is because we see soldiers as stoic. Warriors are stoic. Real men don’t cry – or so we’re told. Women who show their emotions too freely are seen as weak or crazy and subject to ridicule. Real strength is apparently the ability to keep our emotions buried and controlled…or so we’re trained to believe.

When grievers don’t show this type of “strength” and are outwardly emotional and distraught too long after the funeral is over, frustrated former supporters often begin to distance themselves and tell them to, “get over it” and “move on”. It’s only death, after all. They’ve gone to a better place, right? Can’t we just remember that and be happy for them now that they’re at peace with God?

The problem is that most of us can’t. The pain and emotions are just too overwhelming. We are in survival mode. If I had to illustrate what this level of grief was like, it would look like we are standing on a steep hill having to use all our strength just to keep a boulder larger than ourselves from crushing us. That is why grief is just as physically exhausting as it is emotionally.

So when they see us as “strong”, chances are we feel anything but. We feel weak and vulnerable. For many of us, we are barely getting by each day for years after the funeral. We continually don’t know how we manage to get out of bed each morning, but somehow we do. We don’t know how we’re going to get through each day, but somehow we put one foot in front of the other and keep moving. We don’t know how this is done or where we get this supposed strength from. And many of us are sure that at any second, we will lose our tenuous grip on this boulder of grief and it will surely crush us. For a long, long time, that show of strength to those around us feels like a sham.

For many of us, not a day goes by that we aren’t acutely aware that our loved one is missing from our lives. And the constant reminder is painful. But we know that if we continue to show this pain, the negative feedback we hear from those around us will just make it worse. And so we hide it to become “strong” in their eyes. But it creates a distance between us that is not easily undone.

How do we continue to hold that boulder at bay for years on end, or in some cases, for the rest of our lives? For me, and for many people I have come to know who are devastated by grief, we seek out others like us. We do this to find others who have survived this unbearable pain in an effort to learn how for ourselves. We do it to be able to find safe environments where we can express our pain in an effort to process it, and to find the support we need to continue to keep this boulder from crushing us.

I would argue that asking for help in the face of overwhelming pain is one of the strongest things we can do. The act of admitting we are in over our heads and cannot do this alone is sometimes as difficult as losing our loved one. Letting other people in to see our deepest vulnerabilities and fears is not weakness; it is one of the ultimate displays of strength – grieving or not.

Every time we reach out and ask for help or support, that boulder becomes just a little lighter. The supportive hands of others brace us as we push against that boulder. Eventually, these hands of support may even be able to help break down the boulder until it is a more manageable size and weight. It doesn’t matter who you ask for help and support, it only matters that you do.

To those of you who offer, “You’re so strong” as words of comfort, I ask you to consider replacing it with, “I’m here for you” if you want to be truly supportive. For those of you holding that boulder of grief at bay, I hope you continue to reach out for support to help lighten your load. For if I know anything in the wake of my daughter’s death, I know that there are many people who want to help you. You just have to make the effort to find them.

Us vs. Them

“The only source of knowledge is experience.” – Albert Einstein

Humans seem to love groups. There must be something primal about wanting to find similarities we share with others. Is it because we want to feel like we belong somewhere? Maybe it makes us feel safe? Whatever the reason, it creates a sense of “us vs. them”.

Having an “us vs. them” mentality can be both good and bad. Good when it creates a bonding experience and develops closer, stronger relationships for those within the group. Bad when it promotes discrimination or exclusionary practices. Most of the time, we have the opportunity to choose what groups to belong to. We can also usually decide to leave those groups when they no longer fit us.

Sometimes though, belonging to a group that separates “us vs. them” is not chosen, but forced upon us due to circumstance. And there are some circumstances that simply cannot be undone. In those cases, we are subjected to an “us vs. them” reality that we cannot escape from. In my case, as in many others, the death of my child was the circumstance that forever trapped me in an “us vs. them” world I wish I wasn’t a part of.

For the majority of my life, I was in the “them” world. Blissfully ignorant of the depths of pain the death of a child brings. Not to say my life was always easy and problem free – far from it. But the balance of nature was still intact. I was happily raising four children, and motherhood was probably the greatest source of joy in my life. When my 4-year-old daughter died in 2009, I was suddenly thrown out of the world I once knew. My husband and I were now trapped in a group of two: the parents of our dead daughter, Margareta.

Now, I’ve heard many people hear of my circumstance and tell me, “I can imagine how horrible losing a child must be.” And they’re right…they can imagine. But imagination is very different from experience. Imagination is safe. It has limits. You can leave it whenever you want. Actual experience is not so fleeting or forgiving. Once you have experienced a horror so deep and so primal, there is no escaping it. Ever. You may be able to lessen the pain, but you can never make it fully go away. It becomes your constant companion.

Let’s look at another example. We hear stories of brave soldiers wounded, maimed and killed on a regular basis. So regular, unfortunately, we become numb to the horror of it. I can imagine what it must be like. I have a huge source of movies, documentaries, news stories, etc. that depict these horrors in great detail. But until I am actually in the position of having to fight for my life; having to look down the barrel of a rifle and making the decision to kill or be killed; having to ride in a vehicle with the unimaginable fear of whether it will run over an IED and be blown up; having to see my friends and fellow soldiers die next to me…I will never really know what it is like to be in their situation. The same can be said for losing a child.

Once you find yourself in this “us vs. them” world, many are compelled to seek out others in the “us” category. We want to know others who have actually lived to survive this unbearable pain. We want to be able to share our fears and feelings with someone who has had the same experiences as us. It doesn’t necessarily matter that their child died at a different age or in a different circumstance. It makes us feel less alone; less alienated from a world we once lived in but no longer belong to.

I’ve seen many of “us” knowingly push ourselves further away from “them” because of the hurt, frustration and anger “they” can unknowingly cause us. Having only imagination as their resource, “they” can say things they think are helpful and supportive, but to “us” are received as hurtful and insensitive. “They” often want to see us integrated back into the world we once knew and get back to being the person we once were, but we see this as further proof that they simply cannot understand what it is like to be “us”, and makes us feel further isolated and alone.

While it might be tempting to stay completely isolated and alone and have no further contact with “them”, it is completely unrealistic and unhealthy. So where can we once again find common ground between “us vs. them”?

First, we can practice patience and compassion. I know this is easier said than done when you feel you are being crushed by the overwhelming weight of grief, but you need to remember that “we” were once “them”. Once upon a time, we didn’t know the right words to say and probably said many insensitive things unintentionally. We didn’t always know how to act around someone whose overwhelming pain made us nervous and uncomfortable. Our actions probably made them think we were indifferent to their pain, despite our best efforts.

Once you’ve remembered that we were once them and how it felt, you can educate those around you on ways they can better support you. If they don’t know what to say or how to act, then teach them. Let them know when their words hurt (and why) and what you’d rather hear instead. Let them know what they can do for you to help lighten your load. For their sake, be as specific as you can. Remember that many of these people love and care for you, and are likely to appreciate the opportunity to better support you and be open to taking direction from you.

If, for some reason, some of them are not receptive to feedback and remain unhelpful and hurtful, then you have the right to distance yourself from them. Remember that you are in survival mode, and it likely takes every ounce of your energy just to make it through each day in one piece. Your focus – whether they like it or not – will likely need to be on you, your health and well-being for now. Further down the road, and once you are better able to handle your new reality, you can revisit your relationship with them. It’s never too late to try to heal broken relationships.

Ultimately, life will always be some level of “us vs. them”. The best we can do is look for ways to balance the need to find others like “us” while finding common ground with “them”. The more love and support we can welcome into our lives – whether it comes from us or them – the further down the path of healing we will travel.

When Life Doesn’t Go to Plan

Alive-in-Memory-When-Life-Doesnt-Go-to-Plan-smMany of us like to be in control…at least in control of our own lives and our hopes and dreams. But even if we’ve carefully calculated the course of our life and worked hard to let no details slip through the cracks, we still encounter times when our lives simply don’t go according to plan.

Most often, these “hiccups” in life are disappointing or even hurtful, but most are not insurmountable. For example, when a marriage ends in divorce it may bring a level of pain and regret that feels like you won’t ever recover from it, and yet most people do pick up the pieces of a broken heart and go on to find love again.

Perhaps, as in my case, you unexpectedly get laid off from a job that you’ve put your heart and soul into for years. You may find yourself feeling hurt and betrayed…and in the difficult position of having to scramble to find a new job before the next round of bills are due. You may have to reevaluate your career path or even your lifestyle, but I’ve heard countless stories where someone lost a job and then went on to find a better one. That’s been the case for me in the past.

So what do you do when you encounter a major roadblock in life?

Some people refuse to give up on their previous plans, and charge forward come hell or high water. That’s great for them, but some of us don’t have the resources or personality needed to do that. Some people seemingly give up and descend into a personal prison of hopelessness. They tend to withdraw from life and some choose unhealthy ways to escape from the pain.

Most of us find ourselves somewhere in the middle. We still have dreams, but may find ourselves having to rethink the shape, size and scope of them. Some of us may surprisingly come to the realization that our previous plans were actually keeping us in unhealthy or limiting situations…so we make new plans. Chances are if you look back on your life to see where you’ve encountered roadblocks and where your new path led you to; you may actually be quite pleased.

But sometimes, life’s roadblocks are so devastating; we simply cannot see a way forward. Most often, this happens when you lose someone that you’ve built your life – or your identity – around.

In these cases many of us find ourselves frozen in feelings of anger or despair and are unable to comprehend our life without our loved one in it. Some of us simply refuse to accept this new reality and isolate ourselves and withdraw from the “regular” world; resentfully thinking that if life isn’t going to go according to our plans, then we refuse to participate in it until it does. That’s a nice thought, but life often has a habit of ignoring our demands, especially if we simply cannot undo what has already been done – in this case, the death of a loved one.

I found myself in this situation after the sudden death of my 4-year-old daughter, Margareta. Unlike losing my job, where I can simply look for a new – and even better – one, there was nothing I could do to turn the death of my daughter into a better situation. I couldn’t replace my daughter with a new one (and for those who have insensitively told a bereaved parent that they should just have another child…next time, please do all of us a favor and keep your thoughts to yourself). I couldn’t pretend that I’d ever find that elusive “closure” that many people talk about, but doesn’t exist in these types of situations.

I was hopelessly, utterly lost. I didn’t know what to do or which way to turn. And yet, as it always does, life moved on whether I liked it or not. It moved forward without my daughter in it. I was desperately trying to find a way to keep one foot in the world where my daughter was still alive, while keeping the other foot in the present day world where my other children still resided. I don’t advise anyone to try this…it simply does not work.

So here I was, forced to make new plans; plans that did not include my daughter growing up and living a full life. I hated it. I resented it. To this day, I still regret it and probably always will. And yet I am forced to live it. And I suspect that many of you reading this are forced to live with that reality too.

The fact is I have made new plans. While these plans will never be the ones I truly want, because they will never include my daughter alive in them, they try to make the best of an impossible situation. They try to honor her life while honoring the fact that I’m still alive and so is the rest of my family. They will always include sadness and regret intermixed with hope and joy.

And I know whatever my plans may be; they are always subject to change…because life has a habit of sometimes getting in the way.

Using Pain as a Catalyst for Personal Growth

Alive-in-Memory-Using-Pain-as-a-Catalyst-for-Personal-Growth-smallWe all have defining moments. In fact, our lives are filled with them. I would describe these moments as stepping though a portal of experience that reshapes the world you live in. Once you’ve been through one of these portals, you can never return to the world you once knew; you can never un-learn what you now know. The question becomes, what do you do with this new knowledge?

Some of these portals are pleasurable and filled with awe and wonder. They could be like the freedom of getting your driver’s license or living on your own for the first time, getting married, or the experience of having your first child. These types of defining moments are often filled with self-esteem, empowerment, or profound love. They can expand your horizon of what you consider possible in your life or deepen your understanding of what true happiness is. These portals often represent your life at its best.

Unfortunately, the majority of our portals are sources of pain and fill us with fear and dread. They are moments that are galvanized in our minds as ones we never want to experience again and will go to great lengths to avoid in the future. They can be moments of utter failure or disappointment. They can be moments of betrayal or disillusionment. They are often referred to as life lessons, and they generally start when we are young.

Do you remember the first time you were bullied? Or the first time you failed a test or got caught cheating? Did you have a best friend who – for no obvious reason to you – decided not to be your friend anymore? Did you come to the realization that you could never seem please your parents no matter what you did? What about your first major break-up from the person you thought was “the one”? They could even be more significant events, such as the divorce of your parents, the death of a loved one, or abuse at the hands of someone you trusted.

If these were life lessons, what did they teach you? Chances are, rather than teaching you resilience, deeper self-awareness, or how to better express your feelings, these portals led to self-imposed lessons of avoidance, mistrust, self-doubt, suppression of your feelings and emotions, and the underlying belief that most of the time, life just isn’t fair. We may have even come to believe that overall, the world is a frightening and dangerous place. Regrettably, these portals of fear and pain often just lead us to more of the same.

As we get older, these negative portals seem to adapt to our changing situations. Perhaps you’ve been cheated on, gotten fired or laid off from a job, been divorced, or suffered a major accident or setback. In many cases, these painful situations seem to outnumber the positive ones, reinforcing the notion that at its very core, life is hard.

This realization is perhaps the most painful of all. Some people try to numb themselves to the pain with drugs and alcohol. Others may turn to even more destructive behavior in the belief that the odds are stacked against them and life will never become easy or fair. Some put their trust solely in their God. And some never lose sight of the idea that the “grass is greener” on the other side of some invisible hill…if they could just figure out how to get there…without knowing where “there” was.

For the majority of my life (so far), I fell into this last group. I thought for sure that if I just learned how to better control what happened to me, I would be able to find the life I was sure I was meant to be living. The life that was filled with self-esteem, unconditional love, success, and true happiness. In other words, a life that was easy.

I purposely went through portals that I thought would lead me there. I got married. I worked my way up the career ladder by being the best employee possible. I had my first child. But despite all of these positive experiences that changed me forever, I never found a place where the grass was always green. Intermixed with grass I found many weeds, holes, and even dead spots where nothing was able to grow. I continued to be disappointed in life.

But I trudged on. After a divorce, I married again with a better understanding of myself and my needs. My family grew and it brought more purpose and joy to my life. I continued to develop my successful career path. Of course, all of this was intermixed with setbacks and painful experiences. Throughout it all, I kept looking for that illusive hill where the grass was greener on the other side. But I began to wonder if that place really existed.

In the fall of 2009, I walked through the most painful portal in my life. The sudden, accidental death of my 4-year-old daughter, Margareta, turned everything I knew on its head. I detested this portal with every ounce of my being. I desperately wanted to run back through to the other side and erase everything I had just experienced. Yet, as I mentioned earlier, there is no going back once you’ve crossed through a portal.

This particular portal seemingly transported me right back to that fearful place of my childhood where the world was impossibly unfair, dangerous and scary. And yet this time, I had the apparent advantage of almost 40 years of life’s experiences behind me. But to my surprise, many of my past lessons of avoidance, control, and suppression no longer worked. This pain was too deep and too large.

Not having ever been one to numb pain with drugs or alcohol, for the sake of my very survival, I was faced with the task of having to battle this unbearable pain head on. With a chest full of tools that no longer worked, I felt compelled to reach out for help in dealing with this overwhelming pain. For the first time in my life – and full of fear – I began to break down the innermost barriers that guarded my deepest, most vulnerable thoughts, feelings and emotions. I no longer cared about the possibility of rejection or being at the mercy of someone else. The worst had already happened.

The death of my daughter led to years of working diligently and purposefully to learn new tools that would help me work though pain in order to learn from it or let it go, become more self-aware of my needs and feelings, and most importantly, develop a deeper understanding of what I want in my life. In essence, this portal was a catalyst to the most meaningful personal growth I have yet to experience.

Albert Einstein once said, “The only source of knowledge is experience.” And while I will always regret the death of my daughter, I will forever appreciate what it has taught me – and will continue to teach.

Renaming the Stages of Grief

Chances are, you’ve heard of the stages of grief Dr. Elisabeth Kübler-Ross introduced in her 1969 book, “On Death and Dying.” The stages are:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

It is a very nice idea that you can break grief down into defined segments that have a clear beginning and end. This way, you would know when you’re done with one stage and when to move onto the next in progression until you’ve accepted the death and come to peace with it. It would be nice…but reality isn’t so simple most of the time.

A common misconception about the stages of grief

For several months after my 4-year-old daughter’s sudden death in 2009, I saw a psychologist who specialized in end-of-life and grief counseling. When I asked about the stages of grief I had previously heard of, she said she had actually studied under Dr. Kübler-Ross when she was younger. She explained that one of the most common misunderstandings about the stages of grief is that Dr. Kübler-Ross was using them to describe the similar experiences of many terminally ill people facing their impending deaths – not of someone who had lost a loved one. However, since grief from losing a loved one shares very similar emotional responses, the stages of grief became widely assigned to both those who were dying and those they left behind.

Most explanations of the stages of grief now include the caveat that grief is a unique journey and many people don’t experience these stages in a prescribed order, and some may never experience all five of the stages. Instead of a roadmap, these “stages” might be more accurately described as “reactions” to grief, and should be used to help us understand some of the more common emotions experienced on the journey of grief.

Choosing a new vocabulary

The problem with words is that they may carry different meanings to different people based on personal experience. The five stages didn’t particularly resonate with me because my definition of those words didn’t seem to match what I was experiencing. In hindsight, and from my perspective of losing a 4-year-old child in a sudden accident, I would change these words so that they might better describe some of the common experiences shared by those who’ve lost a loved one.

1. Devastation instead of Denial

When someone hears that they are terminally ill, I can understand why they might deny the validity or reality of their diagnosis. After all, we continually hear feel-good stories of people who beat the odds, or were misdiagnosed, or found some alternative treatment that miraculously cured them. It would be expected that their instinctual survival mode would kick in and they would convince themselves that they will be one of the lucky ones…because the alternative is too scary to accept.

In the immediate aftermath of a loved one’s death, the pain is so overwhelming it is impossible to comprehend how you can survive it. You cannot wrap your mind around how you will go on living in a world that no longer includes your loved one. The word that best describes how I felt during this time was complete and utter devastation.

Just like the denial of a terminally ill person, in an attempt to avoid the pain, your mind can pretend the death didn’t really happen. You might continually expect them to walk through the door, or be on the other end of the phone when it rings. You might keep telling yourself that this has to be a nightmare that you’ll soon wake up from. While some people never experience these illusions, for others it can go on for months or even years. But unlike a terminally ill patient who is told of a future probability that hasn’t happened yet – and therefore is not absolute – you cannot change the fact that your loved one died. You are simply trying to avoid the devastating pain that comes with that reality.

2. Anger is still Anger, but also Avoidance

There is no denying that with any kind of loss, you are bound to experience some amount of anger. You may be angry if you feel your loved one’s death was avoidable – especially if it was at the hands of someone else. You might be angry at God. You may be angry at yourself. You can become angry at your family and friends for saying unhelpful (or even hurtful) things to you and not supporting you in the way you want them to. You may even be angry at your loved one for dying. Many people often become angry that the rest of the world continues to go on, not seeming to acknowledge or care that you just lost one of the most important people in your life and you can’t figure out how you’re going to live without them.

I’ve read before that sometimes anger is your mind’s way of deflecting other, more vulnerable emotions you don’t want to experience. These could include fear, shame, guilt, helplessness, or simply a pain so deep and intense, you have not yet developed the tools you need to deal with it. Anger, on the other hand, is familiar. It is a primal defense against external threats. Yet anger isn’t meant to be prolonged or a tool for avoidance. You shouldn’t deny your anger, yet you shouldn’t let it keep you from learning how to better understand and then deal with all of those scarier, more vulnerable emotions.

3. Bargaining is replaced by “What if…?”

I can understand how a terminally ill person would feel compelled to try to change the prognosis by trying to make a deal with God or the universe. But in the case where our loved one has already died, we no longer have any bargaining power. Instead, many people find themselves replaying the events that led up to their loved one’s death in their heads in a futile attempt to re-engineer how the outcome might have been altered. The bargaining of a terminally ill person is replaced by, “What if…?”

What if they had gone to the doctor sooner? What if they hadn’t gone on that fateful trip? What if we had understood the warning signs for what they were instead of brushing them aside? What if, what if, what if…? There are endless variations of decisions we could have made and actions we could have taken. Many of us go through this heart-wrenching exercise in a desperate attempt to regain the previously held illusion that we are in control over what happens to us in our lives. But try as we might, all of these “What if…?” scenarios only end in feelings of regret, helplessness, guilt, or misery. The sooner we decide to stop asking, “What if…,” the sooner we are able to begin the slow journey of tending to our broken hearts.

4. Overwhelmed replaces Depression

Read a list of the symptoms of depression when you’ve recently lost someone dear to you, and you’ll likely identify with most of them. However, I’ve heard some psychologists and grief counselors argue that instead of calling it clinical Depression, it is simply our natural response to such a significant loss. It includes feelings of sadness, emptiness, and hopelessness. It causes complete and utter exhaustion, sore muscles, loss of appetite or mindless eating. It can cause severe insomnia or feeling the urge to escape a painful reality with constant sleep. It can even bring feelings of wanting to end your life; thinking it is the only way you’ll ever escape the unrelenting pain. Regardless of whatever you or others want to call it, it is what it is: completely overwhelming.

When the overwhelming feelings and emotions interfere with your ability to go back to work or just go about your daily life, some people choose to take medication. Others oppose it. Regardless of what you decide is best for you, the important thing to remember is that what you are experiencing is a normal reaction to such a devastating loss. In my personal experience, it is important that you be patient with yourself and allow all of these feelings to wash over you in order to process them and eventually let them go. The more you try to repress them, the longer they will stay.

5. Acceptance becomes Healing

In the case of a terminally ill patient, I think the idea of acceptance is to stop fighting, and find a way to come to peace with the inevitable reality of impending death. I can imagine this is the most difficult step of all…and some may never reach it. Similarly, some who have lost a loved one – a child in particular – may never come to “accept” the death. To many, acceptance often implies agreement or approval. To others, acceptance may imply severing ties to a past we cannot let go of. Acceptance doesn’t have to mean any of this. In the case of losing a loved one, acceptance may simply mark the moment we are ready to begin our journey of healing.

Our loved one is dead; we can’t change that. Instead, we have two choices. First, we can choose to stay wrapped up in a security blanket of misery. Why? Some feel it is the strongest, most palpable connection we have left to our loved one. It may feel as though we would be betraying or diminishing our love for them if we were to ever be happy in a world without them. I have been there myself, and place no judgment on those who are not ready to leave that world.

When you are ready, you can choose to begin to find a new way forward in a world that may not include our loved one, but continues to acknowledge and incorporate the deep, profound love we still feel – and always will. We can choose to embrace the overwhelming pain and learn from it. We can learn what matters most to us, and then invite more of it into our lives. We can learn to allow joy and happiness back into our lives. We can choose to heal.

Those are my choices for new words to replace the traditional “stages” of grief. If those don’t resonate with you, then replace them with ones that do. Ultimately, the stages – or reactions – of grief are only there to let you know you’re not alone in this journey.

Wishing you peace.

Grieving a Future I’ll Never Have

Alive-in-Memory-Grieving-a-Future-Ill-Never-Have-smWhen grief is new, it is excruciating and overwhelming. Many people get stuck in a quicksand of pain that is so thick and intense, it feels impossible to escape. As you struggle through those first few days, weeks, and months, you begin to be pulled so far down into it, you can’t imagine how you’ll survive. I certainly felt that way. I’m grateful that those days are behind me.

And yet you do survive. Despite all odds, you wake up each morning. Your body still functions. You find a way to quietly camoflauge yourself within with the “normal” world around you. You learn to live one day at a time. One moment at a time when the day is particularly hard. Slowly – and painfully – you begin to acclimate to a world without your loved one in it. You do it because you have no other choice.

Over five years after the death of my 4-year-old daughter, Margareta, I’ve acclimated as best I can. I’ve continually faced and dealt with those painful feelings and emotions using every tool I can think of. I still go to grief support groups. I write about grief. I talk to a grief counselor when I feel the need to. I talk about Margareta with those who want to hear. I’ve come to terms with the impossible reality that she is gone and never coming back.

My grief over my daughter’s death will never go away. Ask any grieving parent and they’ll tell you the same. We’ll never “get over it”. What we have to do is accept it and learn how to live life despite of it. I’ve heard some bereaved parents don’t like using the word acceptance. That is because they associate the notion of accepting their child’s death with being okay with their child’s death. But you can accept the reality of something without ever being happy about it; without ever being okay with it. You can’t change the past, so you might as well accept it in order to begin to be able to heal from the devastation you find yourself in.

I have healed a lot in the past five years. The open, oozing, excruciating wound of my broken heart has since scabbed over. I’ll always have the painful scar that reminds me throughout every day that my daughter isn’t here. It’s that constant reminder that is the hardest for me now.

I’m grieving a future I’ll never have. I’m reminded every day of what could have been, but can never be. I’m grieving lost hopes and dreams. I’m grieving the loss of my only daughter and the mother-daughter relationship I only had a glimpse of. Instead of the intense, searing pain of early grief, it has transformed into a dull ache I’ll never escape from.

I don’t think I’ll ever feel fully at ease with this constant ache. I’ll always miss my daughter. I’ll always regret that I didn’t get to watch her grow. But I’m dedicated to learning how to live a happy, meaningful life despite of it. I do this in her honor. I do it in the honor of my other children, husband and family. I do it because I didn’t physically die when she did.

In her four short years, my daughter lived life to the fullest – full of love, honesty and without fear. It is now my goal in life to do the same. I know she would have wanted it that way.

You’re Not Alone

If you’ve lost someone who meant more than life itself to you

you’re not alone

If you can’t believe they’re gone

or that they’ll walk through the door at any moment

or that they’ll be on the other end of the phone when it rings

or you can’t bring yourself to delete them from your phone contacts

you’re not alone

If you can’t fathom how you’re going to go on living

but somehow you wake up every morning

and somehow you go back to work because you have to

and you can’t understand how the world can just go on like it was before they died

you’re not alone

If you’re angry at your god or the world

and can’t stand hearing people laugh

and don’t think you’ll ever be able to be happy again

and bite your cheeks to keep from smiling at something funny

because you think if you are anything other than miserable it is a betrayal of your loved one

you’re not alone

If you sob uncontrollably

and make those around you uncomfortable

or you can’t cry at all and wish you could

or you cry over things that aren’t sad and have nothing to do with your grief

you’re not alone

If you feel like you’re going crazy

and think things like how cold and wet they must be at the cemetery when it rains

and can’t seem to remember simple things anymore

and hear their voice when they’re not there

you’re not alone

If you feel so exhausted you can barely stand

and every muscle in your body is sore

and your heart literally aches

and you feel nauseated

and you either can’t sleep or can’t stay awake

you’re not alone

If you feel isolated and alone

and completely misunderstood

and feel like you no longer relate to your family and friends

and even lose some relationships you thought would last forever

you’re not alone

If you feel like you’re losing all hope

and even might feel like life is not worth living anymore

and even might have thoughts about ending your own life

please reach out for help

because you’re not alone

 

While your loss is unique to you

others have experienced similar losses

and others have experienced similar thoughts and reactions

and others have made it through those impossible early days

and others have learned how to be happy once more

and others have even learned how to live a meaningful life

and others are here to support you on this journey

because you’re never alone

and people care about you

Behind the Veil

Alive-in-Memory-Behind-the-Veil-smallWhen you see me, you probably see what you would consider to be a strong person. You see someone who appears to be living the “American Dream”; juggling a successful career, a beautiful family, a healthy social life, and even time to volunteer for a good cause. You see a person who came back from the death of a young child, and – as you usually put it – has moved on with life.  You see someone who has seemingly taken lemons and turned them into lemonade.

But unless I want you to, you don’t really see me. You see me through a veil that I wear. A veil that lets you see a version of me that I think you want to see.

I began to wear this veil as soon as I started to have to interact with the world a few weeks after my daughter’s sudden death at four years old. When I first put the veil on, it felt awkward and didn’t fit well. But I put it on because your reactions to my overwhelming grief seemingly made my life even harder than it already was. I put it on because I couldn’t handle your looks of pity, your awkward pauses, or sometimes your indifference to my pain. I wore the veil because I didn’t want to call attention to myself in my darkest hour.

When I had no choice but to go back to work, you saw someone who didn’t smile or interact with you much, but you thought that was to be expected – at least for a little while. From your side of the veil, I appeared to be throwing myself back into work with a passion and concentration you hadn’t seen before. You even commented on how impressed you were with my work ethic. After avoiding me and leaving me to myself for a few weeks, you decided it was time to go back to your normal interactions with me. You casually asked how I was and expected the standard, “I’m good, how are you?” You apparently thought it would be good for me to start telling me again of your latest dramas and the juiciest gossip. You wanted me to feel included again.

From my side of the uncomfortable and ill-fitting veil, I was barely able to hold a thought for more than a few minutes before my mind turned to my daughter, her death, and the nightmare I was living in. All the while, I was desperately trying to hold back the tears that were constantly welling up behind my eyes day after day and week after week. I used the veil to try to shut you out so I could use all my energy just to get through the day without bursting into tears and screaming at you all to shut up because I didn’t care about work, your dramas and gossip. None of it mattered any more. Nothing mattered any more. I bit my tongue, painted on a fake smile, and told you I was “fine” for your convenience…and by the way…you’re welcome. I guarantee you would not have liked being around me without my veil on at that time.

When I saw you in the supermarket or doctor’s waiting room or my kids’ soccer and baseball games, you saw someone who usually avoided eye contact but smiled back at you and said hello if you managed to catch my eye. You saw someone who politely made small talk with you and seemed perfectly personable. You asked the standard question when you saw me with my four boys: “Are you going to try for a girl?” You didn’t notice that I flinched when you said it. If I was in the rare mood to tell you the truth, you heard my brief, but sobering statement that I had a daughter who had died. You said a brief condolence and then politely changed the topic, stopped talking, or said goodbye.

Behind my veil I constantly pleaded in my head for you to not look my direction. I just wanted to stay invisible and avoid your small talk. Behind my veil it was exhausting to keep up appearances for your side of the veil. When you did engage me, I summoned up all the energy I had to pretend to be normal; to pretend my world was still the way it was before she died. When I heard you start to ask the question I dreaded most, thoughts raced through my mind of how I should answer. Was it betraying her to pretend she hadn’t existed so that I could avoid prolonging this torture? Most often I gave my standard response that politely laughed it off and said, “No, four kids is enough,” in hopes you would change the subject.

The veil has changed a lot in the last five years since her death. I got so used to wearing it that it began to feel comfortable and even normal. Even though it began to feel normal to wear, I never fully embraced it. I looked forward to the times I could take it off and just be myself around you. As I changed over time, so did your reactions. As I learned how to better harness the pain of losing my daughter into learning how to live a more meaningful life, my grief softened and felt less threatening to most of you. I’ve learned to surround myself with those of you who don’t want me to wear a veil, and for all of you I am truly grateful.

These days I don’t wear my veil very often. But I keep it in my back pocket and wear it on days that are particularly hard – often for no apparent reason. I wear it when I get triggered in public by certain special events, an innocent comment, disturbing image, or the sounds of sirens screaming by.

The veil was an invaluable tool when I was early in this journey of grief, but I would love to live to see this society become one that tolerated authentic grief in a way that made the veil altogether unnecessary. Wouldn’t that be something.

 

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Dedication

This website was inspired by the memory of Margareta Sol Kubitz in hopes of helping others work through the pain of grief.