Grief and the Loss of Control

Grief and the Loss of Control

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Possibly one of the hardest aspects of grief for me has been that I can’t control it.

The majority of my life was filled with desperate attempts to try to control everything in it. I wanted life to be predictable and – above all – peaceful. The problem has been what I tried to control and how I’d gone about it.

I spent many, many years trying to control the people and situations around me. I did this through careful, strategic use of my own words, actions (or lack thereof), and responses. It was exhausting and depressing. And as you can imagine, it never really worked. Maybe I could temporarily create the illusion of control; but it would never last.

Many, including myself, try to control our lives out of a need to feel safe or secure in our surroundings.

Fear of the unknown can be incredibly scary, and even panic-inducing. We experience many uncomfortable feelings like hurt, anxiety, frustration, anger, or guilt due to various situations and people around us. And we tend to want to do anything and everything to make those feelings subside. Sometimes, we can take various actions to change the situation or influence the person to behave differently.

But many times, we are completely at the mercy of unpredictability and the unknown. Death and grief are one of those times.

On the day my daughter drowned, there was a chaos of paramedics trying to revive her. I remember pleading with whoever happened to be listening to save her. I can hear myself screaming, “Please save her. SHE CAN’T DIE.” This was all amid my hysterical sobs and falling to my knees.

The idea that she was dead and couldn’t be saved was unacceptable. No. Through sheer determination, I would will her back to life. And yet, even on that day while I watched the paramedics and then the ER staff desperately work on her for what seemed like hours, part of me knew she had already died.

The grief that took over in the aftermath of her death was overwhelming.

Looking back, I’m not sure what was worse: the excruciating pain of missing my daughter, or the complete and utter lack of control of anything.

I couldn’t change what happened and bring her back to life. I couldn’t control my thoughts or emotions and was a complete wreck for days and weeks. Things that used to be automatic and easy, like cooking or showering were now unbearable and almost impossible. I could no longer tell my other children everything would be ok when I couldn’t possibly imagine that anything would ever be “ok” again.

But it wasn’t just a loss of control. It was being face-to-face with the unknown.

Questions raced through my head. What if I had just stopped to play with her the last time she asked? What if I had brought her with me that morning? Why did it happen to us? Will I ever be ok again? What is going to happen to my family? My other children? My marriage? What happens after we die? Will I ever see her again? None of these questions could be answered. I couldn’t control any of it by choosing the “right” words or actions.

As time went on, my grief took many unexpected twists and turns. I never knew how I would feel from one moment to the next.

I never knew what would trigger my emotions and leave me a crying mess, or in an angry rage, or in a state of panic. And the triggers themselves were random and unpredictable. I would desperately try to figure out what triggered me to try to avoid it in the future. But most of the time, I felt completely out of control. And despite attending counseling and support groups, there was nothing I could really do about it.

I’m not sure when I came to terms with it.

I’m not sure when I accepted that grief, in its very nature, is unpredictable and uncontrollable. But when I did finally accept it, it had an unexpected result: I felt relief.

It was as if a weight had been lifted off my shoulders. Now, when intense grief appears seemingly out of nowhere, I am better able to accept it, process it, seek support for it. And I know that it will eventually pass.

I don’t know what the future will bring, but for the first time in my life, I’m okay with that.

I work on resisting the urge to control others with my words and actions. Instead, I try to speak the truth and express my feelings and needs. I’m okay with focusing on the here and now, yet not forsaking planning for the future. It takes less energy, produces less anxiety, and provides more contentment. It allows me to enjoy the moment.

But I would be lying if I didn’t admit I still wish I could change the past.

I love and miss you, Margareta.

Looking for Hope in the New Year After the Loss of a Loved One

Looking for Hope in the New Year After the Loss of a Loved One

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For many, welcoming in the New Year is a celebration of optimism and hope. Many see it as a fresh start. The New Year’s resolution tradition is a yearly chance to improve your life and perhaps yourself.

Of course, this isn’t a view shared by all.

For the newly bereaved, the New Year’s “celebration” can be an incredibly painful milestone and reminder.

My 4-year-old daughter died on September 30, 2009. In my overwhelming grief, I had been preoccupied with anxious anticipation of how I was going to handle Halloween, Thanksgiving, and Christmas. I had agonized over what I should do or not do to make those three holidays any less painful. I had worried about whether I would break down or have a panic attack on days that were supposed to be celebrations. Since I had never been much of a participant in New Year’s Eve festivities, it didn’t even occur to me that the New Year holiday would be a big deal.

And yet, I was completely blindsided by just how painful the New Year’s holiday was for me. In the week between Christmas and New Year’s, I began to realize I was actually dreading it.

I couldn’t wrap my mind around the fact that a new year was coming and my daughter wouldn’t be alive in it.

New Year’s would bring me no resolutions, hope, or optimism. All I saw was more impossible pain on the horizon. The harsh reality that my daughter wasn’t going to be alive in 2010 made me downright angry that this new year was being welcomed and celebrated by the rest of the world.

Some of you reading this may feel the same despair I did those years ago. The idea that anything good can ever happen again may feel impossible. The mere idea of smiling, laughing, and enjoying life may feel like a betrayal of your loved one. And if you feel that way, it’s okay. It’s a normal reaction to grief.

Only when you feel ready, I encourage you to give yourself permission to look for hope again. But this time with a new perspective.

Perhaps it is like a New Year’s resolution. Not the myriad of resolutions that are doomed from the start because they are too ambitious and too vague. Most people fail these broad resolutions because they try to take on too much at once. They don’t have the willpower to change the lifelong habits that are barriers to their goals.

The resolutions I am suggesting are ones that have very specific, small, and ACHIEVABLE goals. The key to success is to try to un-learn every day habits that normally get in the way of achieving your goals. You can change your habits by setting mini goals that are SO simple to achieve, you actually do them. And if you do them consistently for a certain length of time, they become new, positive habits.

Getting back to the idea of allowing yourself to look for hope in the New Year. If I were to suggest mini goals based on my personal experience with grief, here’s what they might be.

Say or write ONE word that describes how you are feeling every day.

One of the hardest parts of grief is our natural reaction to try to suppress the pain. This might be done through outright denial, keeping busy (and therefore distracted from it), numbing it with drugs or alcohol, etc. The problem with this approach is that suppressing the pain only makes it worse. And it can even prolong the severity of your pain.

By saying or writing one word that describes how you feel each day, you begin to learn how to express your feelings. And when you express them, you can begin to work through them. When you work through them, you can ultimately let those painful feelings go. Words that I might have used four years ago to describe how I felt could include: despair, guilt, panic, fatigued, hopeless, numb, disbelief, angry, despondent. The list goes on.

Acknowledge ONE nice thing that happened every day.

When you are deep in grief, you tend to focus on what you’ve lost and the searing pain associated with it. Your world might become bleak and filled with despair. By acknowledging one nice thing that happened that day, you can begin to create a habit of gratitude, hope, and optimism.

Even if you had this habit before your loss, you will likely experience it in a more meaningful way. Nice things could be as simple as someone holding the elevator door for you. Or as significant as a friend stopping by to say hello and let you know they care about you.

Do ONE thing to take care of yourself every day.

This may not be difficult for some. But for myself and many others I know, this can be challenging even when you are NOT grieving. But in early grief, your energy is usually completely gone most of the time. Even basic chores like cooking or laundry can feel downright impossible. If there is one time in your life that you need to take care of yourself, it is now.

For example, you can ask your family or friends to help with things you normally take for granted. Things like cooking a meal, doing a load of laundry, etc. You can eat something healthy when you don’t have any appetite. Or take a nap when you feel exhausted. You can let yourself cry if you feel the urge. Taking care of yourself could even be something like treating yourself to a massage to help relieve the aching tension you are likely feeling.

Smile ONCE every day.

For some, this may be the most difficult mini goal of them all. For a long time it was for me. I felt that if I smiled, it would somehow mean I was okay with my daughter’s death. For a long time I literally thought I had to be miserable for the rest of my life because of how much I missed her.

Yet, for the sake of my other children, I forced myself to smile again. At first, the smiles weren’t authentic. But eventually the fake smiles led the way to real smiles. Further down the road, the permission to smile led to feeling happiness and even joy once again. Happiness and joy lead to hope and optimism.

That is my ultimate wish for you – happiness, joy, hope, and optimism. You will likely have to re-learn how to invite them into your life. Yet your ultimate motivation and guide will likely be the deep, enduring love you feel for the loved one you lost. And I know there is no end to the depth of that love.

How Are You? A Silent Signpost for the Bereaved

How Are You? A Silent Signpost for the Bereaved

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“How are you?”

The question is seemingly so simple and benign. So often it is just a polite, meaningless pleasantry. Just as often, those who answer the question would never think to respond with anything other than the implicitly expected “I’m fine” or “Good. How are you?” Even if everything wasn’t fine.

Unfortunately, for people struggling with overwhelming grief, the simple phrase, “How are you?” reinforces a deep isolation from the rest of society.

For someone who has recently lost a loved one, it is a silent signpost marking the moment they must take two simultaneous paths. The path visible to the outside world puts on a show that everything is “okay.” The veiled, lonely path is created when society quickly tires of their ongoing pain.

I spoke with a mother who had lost her son a short time before. She talked about the incredible support she received from her family, religion, and friends. It helped her handle her overwhelming grief. But more recently, she sensed their supportive tone was beginning to change when they asked, “How are you?” She said the question was being asked in a way that implied they were ready for her response to return to the standard, “I’m fine.” They were ready for her to move on with her life.

It reminded me of my return to work a month after the death of my daughter. While some people welcome the return to work in an effort to distract themselves from the pain, I returned only because I needed the income. The first day back I made a beeline to my desk, desperately avoiding eye contact with everyone.

I dreaded the inevitable question, “How are you?”

And yet, it came. Many people did their best to avoid me just as I avoided them. But some stopped by my desk to offer their condolences and ask how I was. If I was being honest with them, my response may have sounded something like this:

How am I? I’m completely devastated. The skin around my eyes is raw and hurts from crying so much. Yes – even a month after her death. And there’s no sign of it stopping any time soon.

I’m completely exhausted – physically and emotionally. It took all my energy just to get out of bed this morning. It seemed almost impossible to get in the shower, dress, and drive to work. On the drive it was hard to see through my tears. Several times I felt like steering my car off the road and into a telephone pole, but thankfully I didn’t.

In addition to a constant feeling of pain and nausea in my stomach, I’m angry when I look around and see that everything is “business as usual” around here. I can’t understand how the world continues to march on without my daughter in it. The sound of laughter makes me want to scream. How could anyone be happy right now?

I don’t care at all about my job or what needs to be done. But seeing as how I need the money, I’m just going to put my head down and immerse myself in work. Hopefully it will mean that for a few hours today I’ll be distracted from the overwhelming pain I feel. Yet every time someone comes up to ask me how I am, I’ll be dragged back to into reality and the nightmare I find myself in.

So, while I appreciate that you care, I’d rather you not ask. Maybe you could just tell me you’re sorry, or even give me a silent hug…and then walk away. I simply don’t have the energy right now to pretend that I’m fine.

But, of course, I wasn’t honest. My answer depended on how the question was worded.

If they asked, “How are you?” I replied, “Fine.” If they asked, “How are you doing?” I answered “I’m doing.” Both were spoken in a flat tone of voice that implied I was not fine. It was intended to discourage them from continuing the conversation. This may sound mean, but it took a lot of energy to keep myself from bursting into tears and telling them how I really was.

Because if I really was “fine,” what would that say about how I felt about my daughter? In my mind, “fine” implied that somehow it was okay that my daughter died. It made me feel guilty and angry at the same time.

Over time, answering that question got easier and felt less of a betrayal to my daughter.

Eventually, I could answer “I’m fine” or even “I’m good” and truly mean it. But it took time and a lot of work. It took going to support groups where I could give an honest answer of how I was doing and no one would try to stop me. Everyone there would understand and encourage me to let it out.

Over the years, I learned how to acknowledge and express my grief when I need to. Because when you keep it inside, it simmers and grows. I’ve learned to accept that I have both good and bad days. Over time, the good began to outnumber the bad. I’ve learned to not let the guilt and pain associated with the bad days keep me from enjoying and appreciating my life.

How am I doing now? Even though I still miss my daughter terribly, I’m good.

The Anniversary of A Loved One’s Death

The Anniversary of A Loved One’s Death

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Soon it will be the anniversary of my daughter’s death.

Over the years, I have struggled with how to deal with this particular day. It isn’t like her birthday. Her birthday is painful now, but represents a wonderful day in my life. Instead, the anniversary of her death represents the worst day of my life.

A day full of images, sounds, smells, and chaos that I’d rather erase altogether. It represents a day filled with horror. There is no other word I can use to adequately describe it. It may not have been a mass shooting or terrorist act that got 24-hour media attention, but it shattered my heart into a million pieces and part of me died that day too.

The year leading to the first anniversary of her death was agonizing.

Everything that first year was new, uncharted territory. Each “first” – Halloween, Thanksgiving, Christmas, New Years, family birthdays, vacation – was like swallowing broken glass. How could we celebrate when she wasn’t here to celebrate it with us? The fact that her birthday is 29 days before the anniversary of her death compounded the stress. These weren’t just societal holidays to celebrate with the rest of the world. They were specifically representative of her.

Coming up on the first anniversary of her death, I would lay awake in the middle of the night. Anxiety overwhelmed me as I wondered how I could possibly get through that day without completely losing it? I decided I would hide from the world that day.

I stayed home like a hermit, and the day came and went. But it was a day full of sadness. A day where I couldn’t hold back the images of that horrible day from invading my thoughts. A day when I replayed the “what if” and “why” questions I had let go of months before.

For the second anniversary of her death, I was determined not to hide in sadness. Instead, I wanted to somehow transform the day into a positive one.

I decided it would become a day of gratitude for the people who tried to help on the day she died. I wrote thank you cards to those who were involved in that day and the aftermath. One of the stops was the fire station down the street that first responded to the 911 call. Taking two of my sons with me, we walked up to the fire house door and knocked.

Three firemen came to the door and I explained why I was there. Two of them said they had come to our house and worked on my daughter. With tears in my eyes, I thanked them for their efforts even though she hadn’t made it.

With tears in their own eyes, they said they never forget the times that little kids don’t make it. While I’m glad I had the opportunity to talk to them in person, it didn’t provide me with the peace I was hoping for.

The third anniversary of her death, I tried to treat the day like it was just any other typical day.

That attempt simply ended in outbursts of anger resulting from repressing my emotions. The fact is, it isn’t just any other day to me. And I can’t pretend otherwise.

I don’t think there is a right or wrong way to approach the anniversary of our loved one’s death.

What “works” for me may not “work” for anyone else. I’m sure my thoughts, anxieties, expectations, etc. will evolve over time. These days, I just take it as it comes and know that it will be a sad day no matter what I do.  I’ll just have to be ok with that.

I don’t really have any other choice.

Overcoming the Fear of Death

Overcoming the Fear of Death

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For most of my life, I feared death.

As a child, I would end up in a state of panic if I thought about what happens when we die. So, I would go to great lengths to distract myself from thinking about it. I’ve had many nightmares throughout my life where I face certain death.

The most common, recurring nightmare was being trapped in a car that was plummeting off a cliff toward the ocean below. I would wake up seconds before the car impacted the water with my heart pounding.

Religion has never been a part of my life, and never will. I don’t believe the idea of heaven and hell from any religious perspective.

In my mind, there were only two plausible ideas of what happens to us after death. The first was the idea of reincarnation. The second was that we just die and our body becomes part of the earth.

Neither one sounded comforting or appealing to my childhood logic. If I was reincarnated, I would be an entirely different person and have no memories of this current lifetime. If death equaled nothingness, it amounts to the same thing. The idea that my life, my identity, and my memories would all be “erased” turned death into the ultimate fear for me. So I taught myself to not think about my own death whenever possible.

In 2009, I experienced something far worse than my ultimate fear. Not my own impending death, but the death of someone whose life was more important than my own: my child.

In the early days and months after my daughter’s death, I once again grappled with what death meant. I was forced to face the dreaded question of what happens to us after we die. After reading many books and talking with others, I found no real answers or concrete evidence. The absolute reassurance I was looking for was unattainable. All I knew was that I desperately wanted her to still be with me.

In some moments, I actually wanted to die. Because if there was even the slightest chance of some sort of afterlife, it would mean I could be with her again. Not to mention, it seemed the only form of escape from the oppressive pain I felt. Of course, I knew the pain of my own death would cause my family even more anguish. So I never came close to doing anything to cause my own death.

During my overwhelming grief, I began to notice what seemed like signs from my daughter.

They started off as fascinating coincidences. But the more I noticed them, the more they felt like someone was trying to tell me something. Some signs involved dragonflies or ladybugs. But mostly I started seeing repeating numbers or number patterns each day, multiple times a day. None of this had ever happened before her death.

I only told a few select people about these apparent signs. Some brushed it off as my mind wanting to assign meaning to things that had none. But others wholeheartedly accepted the idea that they were indeed signs from my daughter. Yet, as hopeful as I was that these signs were from my daughter, I was still skeptical on some level.

After years of receiving continual signs, I am convinced that they are my daughter’s way of reassuring me that she is always with me.

I now believe our consciousness continues to exist after our death. I don’t know how or “where.” But I am no longer afraid of death.

Once my fear of death was alleviated, an interesting thing happened. I’ve since had several dreams of plummeting in a car towards the ocean as I did growing up. But they had changed. I’m still falling towards the water in fear, but I no longer woke up in a panic just before hitting the water.

Instead, I dreamt I went into the water. And instead of struggling for breath, I surrendered to the situation and relaxed. In doing so, I didn’t feel pain or panic. Instead, I felt completely at peace.

I think that must be what death is like: a state of complete and absolute peace.

The Ultimate Gift

The Ultimate Gift

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When our daughter died, there was no warning or opportunity to say goodbye. In a matter of hours on a Wednesday afternoon in September, we were completely and utterly devastated. Actually, there are no words that can adequately describe how the horror of that day felt.

After a long, sleepless night, the next morning we oscillated between crying hysterically and sitting quietly in disbelief. We just wanted the nightmare to end and find our daughter still alive. But of course, it didn’t and the phone started ringing as the news of her death began to spread.

One was a call from an organ donation organization. My husband handed me the phone and said whatever my decision was, he was okay with it. At the time of the call, I had been in the state of quiet disbelief. And this call was all too real.

The woman started off by saying how sorry she was that our daughter had died, and then asked if we would consider donating her heart valves and corneas.

My first question was whether this decision could wait. If I still couldn’t really comprehend what had happened the day before, how could I make a decision like this? She said unfortunately no, it could not wait. If we were to agree to the donation, the procedure to remove them from her body would have to be performed that day or the next — as soon as the autopsy was finished.

Ever since I had understood what being an organ donor meant, I had decided to be one. My driver’s license has always had the donor sticker on it. But choosing for yourself is an entirely different matter than choosing for someone else. Especially someone who was not supposed to die. Someone who was supposed to outlive me by half a lifetime.

Ultimately, I decided to allow the donations. If anyone had a chance to benefit from my daughter’s death, I’d rather it be this way.

The woman on the other end of the phone led me through a series of questions she was obligated to ask. Though most of them were written for adults rather than a four-year-old girl. At the end of the questions, she asked if we would like to be notified if my daughter’s heart valves or corneas were used. I said yes, absolutely. Then I asked how much time they had to use them. She said the corneas would have to be transplanted within a few weeks, but the heart valves could be frozen for up to two years.

Over the next few years, we got occasional mail from the organ tissue donation organization. The mailings ranged from information on how to cope with grief to heartfelt hand written notes on her birthday and anniversary. They were greatly appreciated.

And yet, there was never any word that anything had been transplanted.

At the second anniversary of her death we got a written notice that we would no longer receive the letters and cards. But it said if we needed any support we could always reach out to them. A few weeks later, I decided to call the woman, Maggie, who had written the birthday and anniversary notes just to ask one last time whether anything had been used. It was now the end of the two years of viability of her heart valves. In the conversation, Maggie informed me that heart valves could be frozen up to five years (not two). She said she would research our daughter’s records and get back to me.

A few weeks later — shortly before Thanksgiving — I got a call back from Maggie. She informed me that one of our daughter’s heart valves had been sent to a recipient, but there was no record of it being used. She said the fit has to be exact, so sometimes they are requested but not used.

Maggie then told me that one of her heart valves had, in fact, been transplanted into a 6-month old boy in California, our home state.

My eyes filled with tears. I choked up as I asked if the transplant had been successful and if the little baby had lived? Was there any way to find out who the family was? She said unfortunately we could not get the information due to privacy rules. If the family of the baby boy wanted to reach out to the donor family, they could, but it didn’t work the other way. I thanked her and hung up the phone in disbelief.

I’ll probably never know who this little boy is or whether he survived. But I am filled with gratitude that our daughter was able to give someone else the ultimate gift: a second chance at life. I choose to believe this beautiful little boy will live a long, strong, and healthy life. And I choose to believe he will live it with a deep appreciation of life, love, and the kindness of strangers. I know our daughter would have wanted it that way.