When Support Isn't Supportive

I had a video call with someone, and after he sent me a message that said, "You seem to be holding it together relatively well. I always imagined falling apart if I were confronted with something like this.” 

Part of that is my personality. I'm an extreme planner, and it's a distraction. I'm keeping busy because if I think too long about potential outcomes, I probably would fall apart. 

The times I fall apart are at night, when I'm alone. I wake up from a bad dream, or I just simply can't fall asleep because I'm finally still, and my mind starts to swirl. 

The other part of that is, I don't know what I would do otherwise. It's a coping mechanism. It's a distraction. It's a need to be as prepared as I can be. I can't control so much of this, but what happens in the time I have left? That, I can control. 

I joined a support group on Facebook for people with meningiomas and their caregivers. I almost immediately regretted doing so. There are more than 10,000 people in the group. Some of the posts immediately sent me spiraling. People who had their meningiomas removed and had experienced significant negative outcomes. Other people talked about a long, difficult journey to recovery. 

I posted in the group that I had been diagnosed with a meningioma at the end of May and have an upcoming surgery. I listed the possible outcomes the surgeon had provided and asked people who had a meningioma in the same location (brain stem) to talk about the best outcomes, because I already know the worst.

I really want to know what recovery looks like if everything goes as planned. Is it a headache? Is it fatigue? Is it difficulty walking around? Those are the types of things I want to know.

Those replies I got were mostly not helpful. People told me about post-op complications and a long journey to recovery. I thought, “I have to get out of this group.”

But one woman said: “There’s no way to get out of the outcome.”

And that’s true. There’s absolutely nothing I can do. Except wait and see what I’m like when I wake up. So there’s no reason to spiral around the worst-case scenario. 

Another person pointed out that neurosurgeons use a ton of monitoring during the procedure so that they don’t hit a nerve or something important (which are the big risks of my surgery). I have a very capable neurosurgeon at one of the best brain centers in the U.S. I’m lucky to have access to high-quality health care. Several people have told me that this neurosurgeon is the best. I have to trust that he’ll do what’s necessary to remove as much of the tumor as he safely can without damaging anything. 

I’ve been in support groups before. My pregnancy and infant loss support group was everything as I struggled with grief. Even though the circumstances were different, everyone had experienced a binary outcome: our babies had died.

Brain tumors feel different because of the wide range of outcomes. No one can really tell me what to expect. 

For now, I'll take a step back from the support group. Maybe only visit if I have a question. But seeing people struggle with the aftereffects of the surgery or with recurring tumors sent me to a really dark place.

This Is the Room

I finally decided to gather up my strength and attend a support group.

Musings Out LoudAnna Burgess Yang