Hi, guys! Welcome back. Today I wanted to talk about grief. Grief has become not only something that I live with on a day to day basis but also something that I think about quite a bit. I don’t mean that I sit around and think about how sad I am. I mean more like I wonder if I’m doing it right. Am I making progress? Why haven’t I reached all the stages? Why does grief look so different on different people, different circumstances? What do people see when they look at me in my grief? And why does any of this matter?
Back a ways, a few months ago I guess, I really started to question my grief process. Mostly, I think, because I was afraid I would always feel the way I did at the time. So sad without Mister and missing him so much. So I started reading every article I could find about it. Today I’d like to share some things I’ve learned about my grief, about grief in general really, and what I’ve come to call “grey area grief.” A fitting title since the brain cancer ribbon is a grey one.
I found most articles about the stages of grief cite 5 stages; denial, anger, bargaining, depression, and acceptance. Many others cite 7; denial, pain and guilt, anger and bargaining, depression, upward turn, reconstruction, and lastly acceptance and hope. I also found several articles that list 12 stages of grief. Okay, let’s settle down with the additions to the list, people. 5 seems a little stunted to me but the list of 12 seems a little overkill, no pun intended there. The more I read about the stages though, the more I questioned my own grief process. Why did I still feel stuck? Why had I never gone through the anger stage? I mean, for god’s sake, why hadn’t I progressed into anger after being blindsided by this monster that stole so much from us, literally stole “us”? It took a lot of reading, soul searching, and honestly just time for me to realize that caregivers to a terminally ill family member, especially when it’s an illness that causes progressive cognitive decline, get handed the most messed up version of grief, And our grief starts the day that our loved one is diagnosed. It’s like watching the most tragic accident play out in the slowest of motion and you are paralyzed to help. The problem is that it really goes unrecognized, ignored until our loved one is gone.
Once I started to search for articles about grief after caring for a terminally ill loved one specifically all of the things I had read about grief and it’s stages started to make more sense to me, about me really. The Family Care Giver Alliance calls it “anticipatory grief” and “ambiguous loss” Ding, ding, ding! Those terms resonated in my soul! I was finally reading articles about grief that felt closer to mine. It made me realize that I had in fact been through some of the stages long before I was actually a widow. And that some of the stages oozed over into each other in ways I never expected, like specifically the guilt. I’m going to stick with the number system that is traditional used with the steps while also trying to explain the oozing.
Stage 1: Shock and denial
This one is obvious, looking back. The text, the phone conversation, the drive from Maine to Massachusetts, I mean, hell even hearing the words “tumor in my brain;” my mind was still trying to find a way out of this. We had worked with a physician in the past with a benign acoustic neuroma. He lost his sense of taste, had hearing loss, and had terrible headaches after his surgery. At the time, I remembering thinking how terrible this all sounded. But on that day I remember thinking, maybe it’s just that, something benign. That wouldn’t be so bad, right? You can convince yourself of just about anything until you hear the glioblastoma word.
Stage 2: Pain and Guilt
This stage is not so clear cut. Sure, the pain part is. It was punch in the gut after punch in the gut in the beginning. Up until very recently I would have emphatically told you that I had never felt any guilt through all of this. I guess I assumed that meant that the grieving person felt somehow responsible or that they felt guilty for being the survivor. Now I realize that I had guilt the whole time, shame really. Knowing in the back of my mind that this was it, that I was soon going to be without him but feeling ashamed that I felt that way. There’s so much stigma involved with cancer and how it’s viewed in our society. All of this I’ll go into in a separate blog but for today I’m just going to talk about “The Fight.” As soon as someone is diagnosed with cancer the discussion immediately turns to “the battle” or “the fight.” Like if you fight hard enough and keep a positive attitude, everything is going to be fine. I get it, I really do. But the sad reality is that some cancers aren’t winnable. I knew we weren’t going to be “kicking cancer’s ass” or any of the other inspiring battle cries that roll off people’s tongues. That’s how we became #teammoretime. That was our goal, as much time as we could eke out of the universe together, with our family. As thing progressed after his second surgery, it was almost on a daily basis that I would notice changes. I knew what it meant but was also looking for some validation. I wanted someone, one of our healthcare providers I guess, to hear my concerns and say “it’s happening.” I told my kids that I felt like I was the fun sucker, the Debbie downer. I felt like my negativity was somehow speeding along the process. I felt guilty for knowing what was happening which was compounded by the fact that I could not get one single provider to say “yes, this is what you should expect. There’s no turning back now.” Instead, when I would describe scenarios I was met with “huh” most of the time. I felt guilty for finally insisting we move our bed downstairs to the living room knowing that he would never sleep in our bedroom again. I felt guilty for insisting we enlist the help of hospice and palliative care. I felt like I was the one calling the shots, making the decisions that meant it was the end of his life. I know in reality, that was all on the universe but I felt, well I felt guilt at the time. The examples are endless, but the point is that I felt guilty for knowing, for seeing with crystal clear vision and a front row seat what was happening.
Stage 3: Anger and Bargaining
I think my anger was really short lived. I was angry that he went undiagnosed through a carpal tunnel surgery but let’s face it, even if he’d been diagnosed 2 months sooner I would still be in the same boat I’m in now. It’s not like early detection has any impact on glioblastoma outcomes. I had anger and still do toward people that didn’t show up for us. Most of that has turned into pity for people that missed out on spending time with him when he was here. You can’t change other people, make them any better than they are, so it’s their loss really.
I’ve read a lot about people feeling anger or resentment toward seeing other people happy, like people getting married or falling in love. That has definitely never been the case with me. I honestly hope every single person gets to experience a love like we had. It was the absolute best.
As for bargaining, it was really only ever for more time. Which turned into the dreaded double edged sword. Some of the time at the end was too much, too much for him really. He didn’t want to be that way whether he knew it any more or not.
Stage #4: Depression
I’m going to come right out of the gate with my distaste for this word being used as a stage of grief. I’m sad. The whole thing is fucking sad. The whole story is sad. Cancer is sad. Losing a wonderful person that you adored is sad. Watching someone disappear into their own mind is sad. I’m not clinically depressed. I’m sad. I don’t think grief is a time automatically for antidepressants. I’m not saying it never should be but I think as a society we lean way too much on pharmaceutical fixes and not enough on letting people navigate through their grief in their own way, at their on pace, in whatever way works for them. It’s a time to be sad. This is a whole other ball of wax to get into some day but for now, please just recognize that grieving people are sad. Sit with them in their sadness, that’s what we need really. You don’t have to try to fix us or cheer us up. Just sit with us while we’re sad, hand us a tissue, don’t ask what’s wrong, maybe give us a hug. It’s really that simple. Maybe a cookie once in a while, wink wink.
Stages 5, 6, and 7 Upward turn, Reconstruction, Acceptance and Hope
I’m going to bunch all these guys together. These are all the things that start to happen as time goes on. When you’re getting into bed and realize you didn’t cry today. When you start to make doctor appointments for yourself that you’ve been putting off for years because it wasn’t about you for a long time. When you can mention that loved one without crying, maybe even laugh while you’re telling a story about them. All of this is also opportunity for the guilt to creep in and for that feeling that he’s slipping further and further away but I think that’s all part of the process. And I don’t really think of it as reconstructing so much as constructing. I can’t recreate the life I had before but I can create a new one. It’s honestly exhausting to even think about. At 52 years old here I am trying to figure out what I want to do with the rest of my life but here I am, making progress every day.
As for the acceptance and hope, I think I’ve accepted that I will walk with this grief for the rest of my life but I am hopeful that I’m figuring out how to do that. I’m learning how to walk beside it, not get sucked into it, to not try to carry it, acknowledge that it’s there and always will be, and hope that grief and I can learn to live together.
Thanks for listening again. I appreciate all the support. Much love.