I lost my husband to metastatic melanoma skin cancer, which eventually spread to his lungs and brain, taking him from his two amazing daughters (and the rest of us). While it’s likely he got the cancer after a bad sunburn when he was 16, he never had the spot checked out. One day he was with me in one of MY appointments, and my doctor looked at him and told him to get that checked out because it was cancer. Needless to say, I got him in to a dermatologist within a couple of days. That’s when the nightmare began. He lived with the diagnosis from early 1997 through December 3, 2000, around 2:45 am.
During those four years, we did a lot. There was a surgery to cut the spot out of his cheek. This one was scary. His parents and I were there all day, and finally decided to go eat, after the waiting room rep urged us. We were not too happy to find out the doctor had come out to speak to us, we weren’t there, and she was not able to tell us what he said. It would be another few hours before we learned it had spread to his lymph nodes, and the incision went much farther than anticipated, leading to the extra hours of surgery.
The next major surgery was to remove a tumor from his brain. This one went well. Which is not to say it was easy. It’s never easy. You have to give up all control, lean on your faith, and pray those who DO have some control are successful, and guided by God’s protective hand.
I remember he was in the room one of two local police officers who had been shot had just previously been. His older daughter was six at the time, and she didn’t want to leave him. I still remember sitting on the steps outside the hospital, crying with her, waiting for her to calm down before I would drive home with her.
Whenever someone I know is experiencing things like this, things I can identify with, things that trigger my own reserves of anxiety about the situation, I feel almost as if I’m going through it with them. The same is true when someone loses a spouse. I went to a funeral for a woman I had never met, because our spouses were married and I went with him. I remember crying at the funeral as I watched the husband and kids being greeted by people, and nobody understudying why, since I didn’t know her.
What people don’t realize is this kind of trauma doesn’t go away. It stays with you. During those tears, I wasn’t mourning her death. I was looking at the people in front and thinking about what they felt at that moment. And just before. I locked myself in the bathroom before my husband’s service, and friends had to talk me out. I didn’t want to go. I don’t know why. I just didn’t. And when I saw our stepdaughter wandering by with tears, I snatched the opportunity, and took her to her room, where I stayed with her until it was over. Again, crying with her. She didn’t want an angel daddy. She wanted the dad who took her to school on his motorcycle. She was six years old. She doesn’t remember most of this, because she has blocked it out.
So I knew how much this family desperately didn’t want to be where they were. I also knew they wouldn’t want to experience the next few weeks. Or the next few months. Or the whole first year of firsts, or the even more traumatic second year, when it’s not expected to still be so significant for you. But also the moments where you realize, this is never going to be over. This is your new normal. This is forever.
The grief cycle is not kind. And the grief attacks are much more frequent in the beginning years than in later years. All of this, I knew was in their future. I knew what dad was walking those kids through and a lot of what lay ahead for them. I cried for them. My heart broke for them. I still put flowers on her grave at the cemetery my grandparents are buried, since it’s a distance and we don’t get to go often. I can’t leave without stopping by the other one to acknowledge the mom of these kiddos and send them a picture. They didn’t want a mom in on a headstone in a picture. They wanted the mom who was alive. But sometimes, the part of someone who is no longer alive has to live through you instead of for you.
Today a friend had to play the surgery waiting room game while her very young granddaughter had open heart surgery. I can’t explain it. Once you have been there, you can’t dissociate from what you know they are experiencing. I mean, you can, but like all things we dissociate from, we eventually have to deal with it in some way or another. I held my breath all day, imagining what the mom and dad must be going through at every passing hour. I watched the page they set up for prayers, waiting for an update, and praying with all I had that my friend wouldn’t be experiencing a tragedy in the middle of all of this chaos. It’s just too much.
The thing is, I didn’t realize I was holding my breath. I didn’t realize the level of anxiety I took on, again, not because I knew the child directly, but because I knew what the wait was like. There is nothing like it. It wasn’t until they said she was out of surgery and recovering in ICU with good vitals, that I found myself in tears, and realized I was literally holding my breath much of the day, waiting. I had dissociated again.
I realized there is a part of me that is still grieving my own experiences. In praying for my friend not to experience a tragic loss, I was reliving the waiting room all over again. It’s truly one of the hardest things to go through. You can do nothing except pray and wait. You can try to distract yourself with social media (wasn’t an option for me 20 years ago), or puzzles, or books… but you’re not really there. I sometimes wish they could just put the family to sleep, also, so we can just to sleep and wake up when it’s over.
But this is the part we, as surviving family members, have to carry. How many times had many of us wished we could have traded places with him, to take on his pain, his stress, and his sadness, even if it only relieved him of a little bit of the weight he was carrying. But we can’t. We can only wait, and pray. It’s hard. We want to be strong for our family member, so we hide our tears, and try to smile a lot. We cried in the car when he couldn’t see us. I cried at work. His daughter cried at school. We all cried all the time, but normally not in front of him.
We can’t carry what is someone else’s to carry, even when it’s too much for them, even when it’s not fair, and even when we desperately want to. Hospice helped me understand this was a need by family members who feel otherwise helpless. Helpless and at the mercy of the doctors, of God, of the nurses, and of anyone who extends some compassion when you need it most.
This… is the part we carry. For those few hours, they get to go to sleep, and wake up when it’s over. We don’t. It’s the only time in their lives that WE are truly the ones carrying the weight of it ALL. WE are told what to expect. WE are told when there is an update. We are told when it’s over, how it went, and even when they’re in recovery. Sometimes when they wake up, it’s a family member who has to task of updating them until the doctor makes it around, unless he had to leave after the surgery. Then it’s 100% on us to deliver the news typically only given to a patient by the doctor. That is a lot. It’s heavy.
But the thing about it is, this is our only chance to do what we want to do. We want to carry some small piece of the horrific journey for them. This is that chance. In the waiting room. The surgical wait. The surgical weight. For just this brief moment, WE can carry the stress for them. Looking at it this way, it was an honor to carry him for those hours. I would have carried many more if given the opportunity.