If you are a brain tumor or craniotomy survivor, this is for you. I'm not a doctor. I'm someone who has been through it, and I can tell you who got me through it.
I knew a few people who had been through something like this. One of them it happened to fast. Another I had no idea had gone through something similar until we got talking. In the end, the three of us ended up with the same neurosurgeon. That is not a coincidence. That is a blessing.
Then there was a dear person in my life who had her surgery just two days before mine. I didn't know she was dealing with this too. She had known for a while, so she was more prepared than I was.
I also joined a couple of groups of people dealing with the same thing. We talk, we encourage each other and we share what's working. Nobody outside of it really gets it. You can have family and friends all around you, and I hope you do. Many people tell me they didn't, and that hurts my heart. Support is everything. But even with it, nobody can feel what you feel.
The first time someone told me “I get it,” it was one of them. It hit different.
Here is what the doctors did not tell me, and what other survivors told me right away.
The emotions. There is a window where you are just emotional. Not mentally unstable, emotional. You might cry all day, every day. You might cry because you're happy, because you're sad, or because you're crying. You may not know why. I asked another survivor about it and she said, “Yeah, I was crying all the time and had no idea why.” I was relieved. Okay, so I'm not losing my mind.
Crowds. I was never afraid of people. After surgery, noise and activity all at once made me want to hide in a corner, even though I wanted to be around people. A lot of other survivors had the same thing.
The ringing. My ears ring all the time. Most of us deal with it and nobody seems to know why. I'm having a normal conversation and my ears are ringing the whole time. I smile anyway, because I get to have the conversation. I can still hear you.
What people can't see. Simple things like washing my face, brushing my teeth and putting on my shoes can take real effort. I may still be in pain while I smile.
You are the same person, but you're not the same. You want to be the same or better, and nobody wants that more than you do.
The people who love us expect us to be who we always were. They don't mean any harm. But they forget that you may be able to do something once and not every time, or not the way you did it before. They have to adjust, and so do you.
Then you hear “Oh, you're fine,” or “It's been a while, you should be over it.” They have no idea.
When I came home, our son was staying with friends. I'm grateful for them. But I wish I could have hugged him every single night, even though I knew he was in good hands. I needed that. I don't remember much of that time. It was a lot of sleeping and a whole lot of medication.
I can't tell you what your outcome will be. This is so broad and no two stories are the same.
I can tell you that if you do nothing, you get no new outcome. If you never challenge yourself, you'll never know what you can do. There is a real reward in finding out how strong you are even when things are different. A new normal does not mean never. Even with a disability or something you can't do anymore, it may be harder, but it is not over.
There are a lot of good days. It's not all bad. Many people come out of this years later living good, full lives in spite of what they had to adjust to. I see that as possible for me, and for you.
Acceptance doesn't mean failure. It means okay, this is what it is, now what? You can sulk about it or you can keep pushing. I choose to keep pushing.
Cherrell