Grief 101

It seems to me that people put a timeline on grief. Just the fact that we have been taught that there are stages of grief implies that there is a set path. Numbering the stages makes you feel like there is a beginning, a middle and therefore an end. Nothing can be further from the real truth of Grief. The five stages of grief ; denial, anger, bargaining, depression and acceptance were identified by the book “On Death and Dying” written by Elisabeth Kubler Ross in 1969. Elisabeth had good intentions but it has been argued that her original goal of having those in medical school understand what someone may go through when ill and dying has actually caused harm. At one point she revised her findings to include 7 stages. If you google the “stages of grief” you will find information talking about 5, 7, 8 and 12 stages of grief. Everyone always has their own opinion, right? What Elisabeth did accomplish is opening and encouraging conversation about grief, a topic that most doctors did not address and many people suffered in silence. But by labeling grief it became a prescription for how we are supposed to act and feel when suffering loss. But the process is not linear it is more like an unpredictable storm (yes I worked her middle name in there). Stages of grief make me feel like the process should be like a ladder. If you move up the ladder one rung at the time you will arrive at your destination or your goal. So when people go through stages of grief out of order or repeat stages they feel that they are not getting anywhere, they are not following the correct path and they are doing it wrong. What is wrong with me and how do I fix it? I am a fixer, I don’t think I will get healthier until I truly understand and accept that I can’t fix this.

There is no wrong way to do Grief. Sometimes YOU don’t do Grief, Grief does you. This is the unpredictability. The unpredictability of the process includes things like unexpected emotions, triggers, other’s expectations, and a million other things. It is a physical process. Many people, including professionals that we look to for help and answers, view grief as a form of mental illness. It is not just emotional and mental, it is truly physical. Grief does a number on your body. WebMD says “It batters the immune system leaving you depleted and vulnerable to infection. The heartbreak of grief can increase blood pressure and the risk of blood clots. Intense grief can alter the heart muscle so much that it causes broken heart syndrome a form of heart disease with the same symptoms as a heart attack.”

For the past year and a half, I posted less and less on this blog. I had to find a job. Then I had a job. I had to prove myself. If co-workers or people in power were to read how broken I am I believed they would think less of me, they would expect less of me. So I didn’t hide my experience, but I worked harder than normal to prove that it would not impact my ability to be successful in my role. Well, I think I wasted a lot of good writing time. At the end of June I lost my job. It is not clear why. My metrics and my benchmarks placed my event and performance in the top 10% nationally. Two men in a position of power made this decision. They took away my distraction and my purpose for getting out of bed every morning. They both lack emotional intelligence. The parts of my grief that might make my job challenging at the same time made me good at the job. I was able and really couldn’t help being empathetic to people I met suffering from the disease or impacted by the disease. Having raw emotions always at the surface made me vulnerable to people and allowed me to make strong personal connections. Fundraising and creating awareness for a cause is all about building relationships. I found that by sharing my experience with some constituents and volunteers, that we were able to connect on our common emotions. I may never know why or if my grief played a role in my job loss. I now have to grieve the loss of my job and what that means for my family financially and my stress level. Stress is the mechanism that makes what you experience emotionally and mentally become physical. Stress raises your blood pressure and increases inflammation in your body. Don’t discount the physical aspects of grief, they are truly real. Also, remember grief is not just the loss of a loved one, but can be felt from a divorce, a loss of a job, or a global pandemic!

The stages of grief make many sufferers feel they are doing it wrong. It is completely normal for humans to try to find an answer to every question, we need things to make sense, we need an explanation, we need a plan and when we don’t get it we think we must not be asking the right questions or that some how it is our fault. We could write an entire blog just on how mental health has been historically ignored and not taken seriously. I don’t believe there have been huge strides n the treatment of grief.

Like having a dictionary to define our vocabulary there is a publication to define mental illness. It is called the Diagnostic and Statistical Manual of Mental Disorders or DSM. (disclaimer, I am not an expert on mental health, I am not an expert on publications, I am just sharing what is helping me understand what I am dealing with and therefore maybe help you) I believe that we are on the 5th edition of the DSM and it was published in maybe 2012. The DSM was criticized early on as not having a lot of science behind it. It seems to me it was more of some random man’s explanation of what was to be considered normal or abnormal in our society. Up until 1974, homesexuality was listed in the DSM as a mental disorder. Don’t even get me started. I feel like we skipped pride month this year.

I do actually have a point here. Since the “stages of grief” book back in 1969, there really has not been a focus on treating people for grief even though we have scientific proof that it is a real thing that disrupts your life and impacts your physical health. Recently there is a new “diagnosis” that I have self diagnosed myself with. (Thank you WebMd and Mayo Clinic.org) I believe that I am suffering from “Complicated Grief Disorder”. For some reason, I feel better having a name and label for the living hell that I walk through every single day. See we humans love to label things. (I also own an actual label maker and it is one of my favorite things. I remember a day Hayley took it and labelled just about anything she could find including, her brother, the dogs, chargers, food, and more. I still find some of those labels) If we can label it maybe we can control it? Complicated Grief Disorder or also labelled Complicated Bereavement is a real condition, but it is not listed as such in the DSM, but what is hopeful is that it is listed as a “condition for further study”. Okay, let’s do that.

Okay, you are probably asking, what is the difference between regular grief and complicated grief. It seems to me that it is defined by the length of time someone is feeling it and how negatively it impacts their ability to function. It feels to me like an attempt to categorize people that don’t follow the nice, tidy and linear path of the stages of grief. Guess how long you must be suffering to be defined as “complicated”? The DSM says 12 months, some articles I found said if someone is still struggling after 6 months they are now at this escalated definition of grief. Are you fricking kidding me? My 19 year old child died. I should feel recovered after 12 months, that is insane. I don’t know how that time period was decided on, was it that you have experienced every month of the year without your child so now you should be accustomed to your new normal? I know you may be feeling shocked like I was, but be honest with yourself, have you put a time limit on your own grief or the grief of people you care about. Have you thought to yourself, it seems Dawn is getting worse not better, it has been three years this week, shouldn’t she be better? How long do you perform the typical support activities? How many meals did you make for a grieving community member or family in the first three months after it happened? How many have you done that after the first year? Most people that suffer the loss of a child will say that the 2nd year is worse than the first. I am not criticizing, I am just trying to get us to see our own false or unreasonable expectations of ourselves or others when it comes to grieving. The most powerful thing a person can do is show support for another person in pain. My hope is we can all learn from my journey.

Here are the symptoms of Complicated Bereavement, I think this sounds a lot like just plain normal grief. Some people may not have all of these, some may only have a few symptoms, but their grief is no less real and no less painful. Don’t judge someone’s pain by their symptoms. I have made the mistake of thinking grief will fade with time. That is what I experienced with the death of a friend, my stepmom, my dad and my grandmother. I don’t think that is going to happen for me and Hayley.

The signs of complicated grief include:

• Obsession with the departed person, expressed through speech and behavior
• Deep, unbearable sadness that never seems to lift
• Pessimistic expressions of doom, gloom, and despair about life in general
• Irritability and a hair-trigger temper that makes the person difficult to communicate with
• Sleeping problems (insomnia, or sleeping at odd hours)
• Lack of attention to grooming and personal appearance
• Refusing to leave the home
• Persistent anger and bitterness toward the world
• Withdrawal from social interactions and activities the individual used to enjoy
• Denial and defensiveness when asked about the grief
• Distracted performance on the job, or an inability to engage with or take interest in others
• Worsening of any preexisting mental health conditions (depression, PTSD, anxiety disorder, substance abuse, etc.)
• Strong attachment to mementos and reminders of the departed person or, conversely, a strong aversion to those reminders
• Inability to manage daily affairs in a wide range of contexts (work, school, financial, parental, etc.)
• Behavior that seems reckless, impulsive, or potentially self-destructive
• Talk of suicide, or actual suicide attempts

I can count 8 of these symptoms for myself. But as I am reading this, a lot of these symptoms sound a lot like 2020 and Covid Quarantine, what do you think? I wonder what that will mean for all of us. You all may be suffering from some amount of Grief right now. This may not be a bad thing, it may make us more empathetic in general.

I started this entry trying to understand where I am at today. Today was the anniversary of the date I watched my daughter die. Maybe if I can start defining my symptoms I can come up with solutions. I like to make lists, maybe I can have a grief to do list. My counselor has asked me what do I think recovery will look like. Because ultimately the goal is some form of recovery I guess. But I can’t answer that question. I can never imagine recovering from the loss of Hayley. Maybe I need to redefine my goal. Maybe recovery won’t be an option for me. Can I live with that?

I will leave you with some tips to help the people you care about cope with their grief. Remember this may not just be death, it could be the loss of a job, or the loss of what we considered normal. Quarantine, fear of getting sick, wearing a mask, and so on. Covid is the death of our generations “normal”. We may need to grieve before we can accept and be productive again.

Don’t ask someone “how are you?”. I have seriously ran out of adjectives to answer that question with. Instead, ask “what are you feeling today?”

Let us talk about our loved one as much and as often as we want. We are terrified that you or we will forget about that person, that their life did not have meaning. If me talking about Hayley makes you uncomfortable, that is on you. She lived, she is as big of a part of me as she was when she was in my womb. I don’t want to worry about clearing a room because I mention her name. In general people like to talk about themselves. Grieving moms want to talk about their children. Give them that chance. If you knew Hayley, don’t be afraid to bring up a memory you have of her. If you didn’t know her, ask me a question about her.

Try not to say “you will get through this” because honestly I don’t think I will. When I hear that I feel like a failure. Instead maybe say “we are in this together” or “I am here to support you on this journey whatever that looks like”

Don’t say “let me know how I can help”. We barely have the energy to make daily decisions. I can’t think of how you can help, I also don’t want to be a burden, I don’t want to hear a courtesy invite, and it may be all I can do that day is breathe, I can’t also come up with an answer for you. Be specific, not open ended. “Can we have socially distanced coffee on Thursday or Friday?”. If I can’t say yes, make sure that is okay. You can say, “Are you available for coffee on Thursday?” me, thinking well I am unemployed so probably yes, but will I feel like doing that on Thursday? “Great if you are available why don’t we plan on it at 10:00. I will call or message you by 9:00 to see if you feel up to it.” Let the me know that it is okay to say no, and that you will keep asking and if I never say yes, that is okay. Don’t make it about you. It is not about you. You can also say “I am going to the store today, what can I pick up for you and leave on your porch?”

Grief re-writes your address book. People that you have known for years may not be the people that are capable of supporting you. Be open to new people. Some of my biggest supporters never met Hayley.

Don’t always feel you need to fill the silence. I am so bad at this. I am a conversation filler! I have always felt silence needed to be filled. It doesn’t. There are times when I just need you to sit with me.

This is a big one. Don’t compare losses. I am so guilty of this one. Try not to judge people. The loss of a baby is just as traumatic as losing a 19 year old. Don’t compare your loss to mine. Never ever minimize your feelings or feel that you don’t deserve to feel as bad as me. A perfect example is suicide. A mother that lost a child to suicide and a mother that lost a child in any other way are exactly the same, they are a grieving mother. Again, don’t judge.

Dates will be hard forever. Holidays, birthdays, anniveraries, etc. Own it. I thought it is just a date, I should not let it have this much control over me. It does, accept it, plan ahead, take the day off work, let your friends and family know if there is anything they can do to help that day. One year you may need to be distracted, one year you may just need to try to sleep through it.

I saw this one recently on another grief blog, I wish I had practiced this one, maybe I would not be still struggling with my weight. People will bring you food. It is just a thing. Don’t feel guilty if you don’t eat it, and in my case don’t feel guilty if you do.

Death makes people uncomfortable. Expect awkward moments and insensitive comments. Cut people some slack.

Triggers are a real thing. They are not always obvious and you never see them coming.

Never say to a grieving Mom the following statements, if they say it first it is fine, “they are in a better place”, “God had a plan for them”, “they are no longer in pain”, Don’t assume they have the same religious beliefs as you.

Do not say “I can’t imagine what you are going through”. First that just makes me feel jealous of you and instead of saying you can’t, how about you try to understand what I am going through? True love and support always starts with the effort to be empathetic.

Please don’t say “everything happens for a reason”. There is never going to be a reason I can accept for why Hayley died.

Do not ever start a sentence with “At least”, trust me it won’t end well. Don’t say “at least you have another child” or “at least you are young enough to get pregnant again”

Do not ever speak for my child. Do not say “Hayley would not want you to be sad all the time” “Hayley would want you to be happy” Using our children to put pressure on us is just wrong. You don’t know any of that. Hayley was one of the most emotionally intelligent people I have ever met in my entire life. She would understand that I am going to be sad all the time at the same time she would understand if something makes me feel happy too.

Again, because this is a big one, don’t ask how you can help. I won’t always know that answer. A grieving person doesn’t know right away what they need, they just are trying to take the next breath. Be specific as possible. Remember that most of the favors and support stop after about 3 months but we need help and support for so much longer

Try not to make generalizations like “you are so strong”. You may mean it as a compliment and sometimes it does feel that way, but more often it means I am functioning well on the outside and now I feel like I can’t let you know how bad I am doing on the inside because then you won’t think I am so strong. What is even worse is saying “I don’t know how you do it. I could never be as a strong as you. If it was me I would just curl into a ball, I wouldn’t be able to get out of bed. If it was me I wouldn’t be able to function at all.” What I hear is that I am grieving wrong or not enough. If I am doing “well” I must not have loved my child as much as you evidently love yours. If I get out of bed that day I am not grieving enough or I didn’t love her more. Trust me, you don’t know what you are capable of until you have absolutely zero choice. I remember telling both my kids at different times to try to make them not risk their lives and make good choices by telling them “if something happened to you I would die”. Yikes, talk about Mom guilt. But I felt this way. I still feel that death for me would be so much easier than feeling this pain every day. But you will find a way to be “strong” whatever that looks like. If you have another child you still have to be Mom. If you don’t get out of bed and go to work, you don’t get a paycheck and you can’t pay your mortgage. Are you going to let that happen to your family? You will be that strong. It is not a contest, Karen. Don’t make it one.

Do not be silent. The thing that has helped me the most over the last 3 years has been all of the simple support from so many people. More than I could ever count, more than I could ever say thank you for. The things that have kept me going are the responses I get from Facebook posts, or blog posts. The comments and notes. But not just that, the random text or message. Hey I was just thinking of you today. Hey, I was just thinking about Hayley today, I really miss her. This happened to me today and it reminded me of the time Hayley and I…. I wish I had known Hayley, she sounds amazing. I hope you and Scott and Henry are doing the best you can. Even an emoji or a heart is such a lift, such a feeling of not being alone. Feeling alone is one of the hardest symptoms of grief.

Be Kind. Be Funny. Be Real. Be Empathetic. Be Honest. Be Aware. Be Open Minded. #belikehayley