I wrote this a while ago and have sat on it for a lot of reasons. Number 1 the way I cope and the way Garry copes are very different. He wants privacy and I need to share everything. It’s a tricky balance between me feeling muzzled and isolated to him feeling exposed. But also, because I’m not very proud of myself for this one. I’m sad and a little ashamed. However a dear male friend of mine recently told me that he has always loved and respected my vulnerability. He encouraged me to never stop practicing vulnerability. Also, I started this blog for two reasons. It’s cathartic for me, but I also hope to give voice to things other people are experiencing. I had a really hard time finding resources that were relatable when Garry got sick. They all seemed very sterile and PC. Not my style. Life with cancer is a lot uglier than that. I’m uglier than that.
We’ve all experienced a moment when someone’s words force you to look at who you are. It’s as if they made you look in a mirror. Sometimes you like what you see and sometimes you don’t, but I’m getting ahead of myself. Let me back up a little.
Recently, I diagnosed Garry and myself with post cancer stress disorder. Granted it’s not a real diagnosis and diagnosing is outside of my scope of practice. BUT the fact remains that we both freak out about things that never would have bothered us before. You know about my risk aversion. I am terrified of anyone I love or even myself getting hurt. Garry’s stress is more psychological and insidious, and I haven’t always alleviated it. In many ways I’ve compounded it.
When Garry was diagnosed I remember having the surreal thought of “So, this is what will make me a widow”. Slowly but surely I psychologically moved into what I call “the widows waiting room”. I knew I might be able to leave the widows waiting room by the same door I entered, but I also knew I was likely to have to pass through the other door, the door that leads to widowhood. I became obsessed with widows in my life. I watched them like a stalker. I wanted to know how they stayed strong, what got them through, and more importantly how were their kids coping? I obsessed on them and I made my peace with becoming one of them. What I saw was encouraging. These women were so strong and brave and kept putting one foot in front of the other, for their children if not themselves. It gave me comfort that I could walk that road too, if I had to. But Garry didn’t die. The cancer died. He’s here today with no evidence of disease, and I’m still living in a widow’s waiting room. I’m scared to move out. I’m not sure I know how, and I don’t really remember what life was like outside of this room.
Garry has been well for the better part of the last year, and I have very consciously decided to stay in the widows waiting room. I thought I could stay here and no one would notice, except maybe my closest friends. I know it’s counter intuitive. I know it seems like a place I should run from at the first sign of an opening, but it’s not that simple. Being plucked from my happy normal life and dropped in the widow’s waiting room was more painful than I can explain, but I’ve gotten used to being here. I’ve gotten used to pondering and preparing for all the bad things. I’m afraid to leave, because what if I have to come back? In my mind it made more sense to stay than to face the pain of leaving only to be forced back months or years from now. Staying in this room, in this psychological place, was purely for my protection. It was my way of buffering a potential fall. It is a way to anesthetize my life.
Kate Bowler, author of Everything Happens for a Reason and Other Lies I’ve Loved, writes about the realization that her cancer was the most painful thing that happened to those she loved the most. She goes so far as to say that she is the worst thing that’s ever happened to them. No one thinks that when they look at a sick loved one, but the sick person feels responsible for the pain they cause however out of their control it is. Cancer gives everything an edge. Even love and joy will cut you, because you know they may not last. Loving a person with a life limiting illness hurts, and it probably hurts them even more to love you back. You are potentially saying goodbye to them. They are potentially saying goodbye to everyone, even their children.
It is normal to start grieving someone before they die. It’s called early bereavement. There are counselors who specialize in this. I’d be lying if I said I hadn’t started grieving Garry’s potential death years ago. I probably started grieving him almost as soon as we had a diagnosis. It hurts. It will wreck you. When you suffer from a prolonged pain, physical or mental, you will eventually find ways to numb it. For me it was tasks. I stayed busy. I planned and worked towards making life easier if BD and I were to become a family of two. It numbed the pain. It was progress and motion and it gave me a sense of control. I got used to this life. I found other ways to cope that included distancing myself emotionally from Garry, and it became my normal, semi-comfortable life. I didn’t do it on purpose or plan it, but I did distance myself from him.
I’ve been in countless people’s homes throughout the end stage disease and dying process. It’s really common for people to disengage as they near death. I always assumed it was to help them leave this world. Disengagement was a means of softening the forever goodbye. Without intending to or even realizing it, I was disengaging for my own self-preservation. When Garry got well, I didn’t know how to let those coping mechanisms go. I didn’t want to. I felt like this continued state of being would protect me and keep me safe knowing the potential for the cancer to return. I had this illusion that I could secretly stay in the widow’s waiting room and Garry wouldn’t notice.
A few weeks ago we ran into a friend who is a breast cancer survivor. Like Garry, she is currently doing well and has no evidence of disease. They started chatting about their current state and treatments or lack thereof. The conversation then shifted to how their marriages have evolved in the face of cancer. They both acknowledged their awareness that their spouses were preparing for their death, and acknowledged that as painful as it was watching us plan a life without them, we needed to do that. Then she said that thing. That thing that made me cringe, and feel so small, and ugly, and sad. She said, “Okay, so it looks like I’m going to be here, so you can come back to me now”. Garry didn’t say anything verbally but his body language showed absolute alignment and understanding with her statement. None of this was directed at me. It was a conversation between the two of them, and I was mostly standing to the side. It was, however, a bitch slap I needed and deserved. I know that was not her intention. She is very kind and thoughtful and I have a great deal of respect for her, and I think that is why her words carried weight with me.
I’ve sat with that for the last two weeks. I’ve tried to justify staying in the widows waiting room, because “what if”. I even wrote his Oncologist and let her know where I am at emotionally. I asked if I’m being pessimistic/crazy. I told her, I’m stuck and I don’t know how to move on. She wrote me back within hours because she’s a brilliant physician and an even better human. She told me I wasn’t pessimistic, and that the cancer could come back, but then she gave me all the reasons to have hope. I can’t really explain how, but she kind of opened the door for me. It was probably a door that only she could open.
For the first time I started asking myself if I’d regret staying in the widow’s waiting room. It wasn’t about safety for me anymore. It was about regret, and I would regret staying here. I would regret it profoundly. I don’t care if Garry has months or decades left. I don’t want to spend them in here anymore. I want to go home. It’s moving day. I need to pack my shit and go home. All of me, with nothing held back. I can take the hit of bad news down the road. I’m well-conditioned to take that hit, but I may not have to, and time in the widows waiting room with a healthy husband waiting for me is wasted time. I don’t want an anesthetized life. I don’t want a life of regret. I want a life of deep connection with the man I chose, and would choose again.