Thursday, June 14, 2012

The New (and Unofficial) Stages of Grief

You've probably heard me express my disdain regarding the "stages of grief" before but I've never really been able to articulate why those stages and that phrase bother me so much.

Some of it has to do with the fact that in the beginning, whenever I expressed an emotion it would inevitably be met with a comment like, "Oh, yeah, you're still in the bargaining stage." I hated that my grief and sadness were being chopped down to analytical expressions.

A lot of people don't know this, but we don't know how Toby died. I don't mean that in the way that we don't know what SIDS is-I mean we never even got an official cause of death. We have never seen the death certificate or an autopsy report. It might say SIDS, it might say heart attack, it might say air pollution. We have no idea what they ultimately labeled his COD, other than it was not suffocation or asphyxiation.

So when I got pregnant with Iris I was concerned that Toby might have had something genetic and that, therefore, she could be predisposed to it as well. I talked to a lot of doctors about this, but several friends assured me that it was just a phase of my grief and that once I reached the "acceptance" stage I wouldn't search for answers anymore.

Um, newsflash people: I just had brain surgery for a genetic defect and my youngest child has a genetic condition that, so far, only one other child in the entire state has. So I wasn't just being a paranoid grieving mother. My fears were real and validated. (Although we still don't know if either one of these had anything to do with Toby's death.)

Plus, I never really resonated with the stages themselves. I never went through a bargaining period. With Toby gone, what was there to bargain with? I woke up and he was already dead. There was no praying to bring him back or making empty promises to do better.

Later, I learned that the stages themselves were originally created to deal with a traumatic illness, not death at all. This made more sense to me. I can say that now having dealt with a brain problem, those stages are much more fitting to that process than they ever were to losing my child.

I have also learned that if there is a cycle it is not linear. You can jump around and go back to the different stages and you don't even have to do them in order. That makes more sense, too.

The original model for the stages of grief do not take cultural relevance or an individual's specific support system or interpersonal relationships into account. I do believe this is important to consider.

The reason it's important is because if you read a lot of childloss blogs you will see that a lot of us have different ways of dealing with things. These differences can be significant. For instance, a friend of mine who lost a child cannot go to places where there are other children. Just sends them into a panic attack. This was NEVER an issue for me. Why? Probably because I had a surviving child. I was forced, from Day 1, to be around loads of other kids. I couldn't just cut off his friends for my own mental health. I have no idea if I suppressed that sadness and that panic for his sake and just never dealt with it or if I never had it to start with. Either way, it wasn't a part of my grief.


It's also important to remember that grief from childloss is NEVERENDING. You might reach an acceptance stage and stay there for months or years and then go back to anger again. There are no "rules" as to how this works.

So I have been researching and reading and I have come across some other theories and ideas about the stages of complicated grief and I wanted to share them. These resonate with me a lot more and are some ideas that I might actually be able to get on board with.

1. Adrenalin rush- 

I guess this could also be grouped in with shock. I do, however, believe that it was the "fight or flight" response that got me through the first few days of Toby's death. The rush of adrenalin was was enabled me to perform CPR, hold the breathing tube in his mouth in the ambulance, wipe the blood from his mouth and nose in the hospital, make all the phone calls, and make important decisions such as organ donations hours after his death. It was more than numbness-it was a rush. I felt like a go, go, go movement inside of me until I eventually collapsed back at home.

2. Searching

Some might call this denial, but I think it's more biological than mental. In the weeks following Toby's death, I still biologically felt like a new mother. I felt weight in my arms, heard his cries, and occasionally found myself wrapping up pillows and swaddling them without even thinking about it. My body was still on his sleep schedule. I believe that I was unconsciously searching for the baby that was no longer there.

3. Numbness

I personally lived with numbness for months. Although I was still crying on a daily basis and certainly felt sad, it all felt in my head. It hadn't touched my heart yet. The numbness allowed me to make decisions, cook dinner, play with Sam, and do all of the little things that seemed insignificant at the time.

4. Suffering

The real suffering set in months later-probably at about the 6 month mark. That's when the real pain, agitation, depression, loneliness, and guilt came on in full force. The reality of the situation was clear and enough time had passed that everything in me knew that he was gone for good and was not coming back. These were, by far, the hardest months for me. Unfortunately, I think for most people, by the time this comes around a good deal of their support people are gone so while this might be the toughest "stage", it's usually one that is faced alone.

5. Anger

I would say that the anger was always there, but it came on really strong once the suffering hit. To be clear, I was NEVER angry at Toby. My anger was directed at other people. I was angry at the way we were treated directly after his death, angry at the way we continued to be treated, and angry at the people around me who had all pulled away.

This might not be a popular viewpoint, but sometimes directing my anger at other people made me feel better. As long as I was angry I still had feelings and wasn't numb. That's not to say that those people didn't deserve my anger, because they did, but I think my anger served a purpose as well. To be mad at them for not understanding, for brushing us off, and for seemingly not to care I could harness my emotions and have an outlet. In the long run, did it matter that those insignificant people didn't understand me? No. But I didn't have anything else to do with those feelings.

6. Loss of faith

I don't necessarily mean this in the religious sense. I don't openly speak about my religion because people think it's weird and that it's a phase, despite the fact that I have been practicing it for more than 20 years at this point. But let's just say that I practice an "alternative" form of religion that is not hugely popular.

At any rate, I think at this point people can start questioning their faith in many things: their religion, their friends, their family, their goodwill, and the world in general. It becomes difficult to see the good in things around you. You are no longer innocent and naive. You KNOW that building a brick house is no longer a  surefire way of keeping the big bad wolf from blowing it down. Your very foundation is rocked.

Some people come out of this stronger in faith. Some never do.

6. Adjusting

Recovery, also called "acceptance", does not mean that we have moved on from our grief. It doesn't really even mean that we have "recovered" from it since you NEVER recover from losing a child. I think what it DOES mean is that you manage to find a somewhat healthy way of living with it in better harmony. The things that used to prevent you from doing something, like going to a park and seeing other children playing, still hurt like hell, but you manage to find a way of doing them with some level of functionality.

7. Reorganization

This is a relatively new one for me but it makes sense. There came a point where it became very important for me to organize not only Toby's things but my life in general. I wanted to sort through his clothing and toys, clean up my Facebook friends, and scrub the toilet all on the same day. Putting things in order is a huge part of the grieving process and still something that strikes me at odd times. I got a lot of out comfort out of folding his clothes, wrapping them in plastic, making shadowboxes, and creating a scrapbook. On the same token, I got a similar sense of fulfillment by dusting, vacuuming, and cleaning out my shoes. It might have something to do with regaining a sense of control, but I'd rather not analyze it too much.



Acceptance

I am not including this as a stage. I am adding it, though, because sometimes one of the hardest parts of dealing with grief is being able to accept that we are in a "new" normal. I know it sounds strange, but sometimes we have to grieve the act of moving on from a grieving stage.

It can be incredibly hard to go from crying every day and feeling horrible to suddenly...not. In fact, that can make us feel WORSE. It brings on all kinds of guilt. That's why it's so important to be gentle with ourselves.

There are some mothers I know who are unable to read grief blogs from those who are newly grieving because it makes them feel as though they are slipping backwards. It's important to remember that's okay, too. Even though we have all experienced a loss, none of our losses are the same. Everyone is on their own path, has to find their own way, and may or may not feel the same way about things. The best thing we can do is hope to find some friendly faces along the journey. I am including a bluegrassy sort of song at the end of this entry that reminds me of that.


KEEP IN MIND

* Grief has no set time limits-you will always be grieving
* There are no "true" stages-everyone grieves differently and not every "stage" will apply to every person
* We will never be our "old selves" again, but that doesn't mean that there can't be wonderful things that we find in our "new normal" (I, for instance, think that I take things for granted a lot less now)


Song Lyrics 

Traveler's Lantern (Dwight Yoakam)

If deep in the night
You hear a voice calling
Lost and alone
Barely able to speak

With each weary step
Through cold shadow they stumble
Blindly along
Frail, hopeless and weak

Won't you set out a traveler's lantern
Just a small light that they might see
To guide them back home before they wander
Into the dark billows that crash on the sea

At dawn's rise you may find
The footprints of angels
Brought the fellowship there
By your mercy lamp's flame

Walking beside
The weary soul life's forgotten
Bringing comfort and love
And gently leading their way

Won't you set out a traveler's lantern
Just a small light that they might see
To guide them back home before they wander
Into the dark billows that crash on the sea




*note:
I made some of these up myself. Others, I got from various sources. You can find them here:

http://www.recover-from-grief.com/new-grief-stages.html

http://www.hoag.org/services/more-clinical-services/pregnancy-and-infant-loss-program/characteristics-and-stages-of-grief

http://health.msn.com/health-topics/mental-health/articlepage.aspx?cp-documentid=100246813

http://www.caring.com/articles/five-stages-of-grief

3 comments:

Maxie's Mommy said...

I have so many comments but I will be brief. I am in the suffering stage. Holy Cow am I in the suffering stage! I can smell Max, I can feel the back of his head against my lips, I can feel the weight of his body on my lap....and at the same time I CAN'T. I am S.U.F.F.E.R.I.N.G.
Anyway, it all made sense to me when I finally realized that the Kubler-Ross thing wasn't about grievers. I, unlike you, HAVE been in a bargaining stage since Max went to the hospital. I am still unconvinced that there isn't a secret vortex that I am being held back from and I want to get back in time to my baby SO badly. OR - I will trade anything to just get to the end already so I can be with him again. Bargaining hasn't gotten me very far yet.
I am reading a book called, "How to go on living with someone you love dies". It is really good actually. The author, Therese Rando, outlines 3 stages of grief:The avoidance phase (adrenaline and such), The confrontation phase (anger and such) and the accommodation phase ("acceptance" and so on). I like her outline. I like yours too! Will I ever get to the phases past suffering? I am a seriously tortured soul. Max is still my whole life.

Jayden's Mommy said...

Its a little bit esier to understand in this way than when people tell me oh you are so strong you are able to deal with it so much better than other people I know. I'm not strong i m just good at hiding my pain. I just dont have a choice today. And the order in which you mentioned them it deffinitely fits me. and its now at 4 months that the pain has intensified. The only difference is that I cant be angry at people, the people that matter have been there. but im super angry at myself for not doing things differently, since I was a little kid it was drill in me the responsibility of a MOM and i cant get over that.,

Rebecca said...

MM- I do think your situation is unique considering the circumstances around Max's death since he was able to be revived and you spent time at the hospital with him before he passed. I can definitely see how bargaining would factor into that. Toby had been dead for several hours by the time we found him (we think, we don't know what time he died, but he was blue and and cold). There was never any real hope for him to improve. I am thankful that the paramedics went through with the ruse of putting him in the ambulance and hightailing it to the hospital-a "perk" of living in a small town I guess since protocol actually dictated that they declare him dead on the spot and bring the coroner in then and there. The fact that they went through all the motions of trying to save him means a lot to me, considering that all of us knew that he was already gone.

I believe that "suffering" is an apt description of what we go through. It's a word that says so much. You're not just sad or angry or guilty-you're suffering the same as you would with any traumatic illness or painful medical condition. I am not sure that it ever stops, but I think it lessens to a degree that makes functioning more bearable. I do believe that having Iris helped me get out of that most horrible part because, if nothing else, her presence and character distracted me to an extent and gave me something joyful to focus on.