When Am I Going to Feel Normal Again After Brain Surgery?

Posted on
Feb 7, 2017
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It’s been four long years since my brain surgery, and I’m now so removed from the experience and most of its consequences that I almost need to remind myself that it happened. In the weeks before, when the tumor on my hypothalamus was an unknown variable, my friend Mindy said to me, “Hopefully, one day this will all be just a really weird story you tell people.”


For a long time, that seemed like an impossibility – it felt like my brain surgery was a defining moment in my life, if not the defining moment. It felt giant and inescapable, consuming huge parts of my personality.

“I’m Geraldine. I had brain surgery.”

It felt like there was no other story for me to tell.

Self-portrait in my neurosurgeon’s office.

For a long time, I just wanted to feel like myself again – a struggle that took on a life of its own. I was so consumed to getting back to “normal” that I was anything but (it did not help that every time I saw someone who I’d last seen before my surgery my first question was, “I’m the same, right? I haven’t changed?”). I was so eager to get back to doing the things that made me me – like ineptly writing and ineptly working out and competently baking and consuming elaborate sweets – that I offered myself no room for recovery, no room for empathy, no room for error.

Three months after my surgery, I messed up a pie. I’d overfilled it, and it leaked onto the bottom of the oven, where it instantly burned. My kitchen filled with smoke. I panicked – not simply because I’d wasted time and money and perfectly good pastry, but because I’d placed so much of my self-worth into that dessert. I’d regarded it as a sign that everything was back to normal – look, I’m even making pies again! And then I screwed it up.

I stood in my kitchen, crying and yelling at Rand. The intensity of my outburst was understandably confusing for him. I remember his voice as he tried to comfort me, the worry hiding behind the calmness of it. I remember shouting, “NO, EVERYTHING IS NOT FINE.”

The screaming is never really just about the pie.

Before my surgery, I was frustrated by the lack of information I found about what it was actually like to have a brain tumor removed. The Mayo Clinic had a couple of articles, as did a few other health-related sites, but none of them were written by people who’d actually experienced it themselves. That’s why I’ve written so extensively about my brain surgery on this site – I figured I could help put my experience out there for others. I didn’t anticipate that the comments section of those posts would become a sort of forum for people experiencing the same thing.

I’m glad there’s a community of people comforting one another, but I don’t spend a lot of time there myself. It’s still too hard, four years out. Every now and then, someone will leave a spate of comments filled with worried, hyper-specific questions. I get angry at myself for not having answers. I get angry at them for reminding me of how I felt during that time. It’s not fair, but there it is.

Rand and I in my hospital room, after I woke up from surgery.

Occasionally, I get emails from people who’ve found my blog, or from a friend of a friend who’s about to go through the same thing. They’re worried. I find myself at a loss for what to say. I can’t tell them about their brain surgery. I can only tell them about my own. I type out the words, “Everything will be fine.” I remember when my mother said that to me before my surgery. I want them to believe me. I wanted to believe my mother.

The one question that everyone has, the one question that I always struggle to answer is invariably this: When I am I going to feel normal again?

I had that question, too. (See Pie, screaming about.)

And the answer is: I don’t know. Every case is so specific. I’ve had friends who were home and walking about the day after their brain surgeries – whereas I was still in the hospital and barely aware of what was going on. I slept for most of the first week. I had zero attention span. The first time I managed to pay some bills after my surgery (an undertaking which was both physically and mentally exhausting), Rand was so proud he cried.

We went out with friends 12 days after my surgery and I could barely string two sentences together. We left for a trip not long afterward and by the time I’d finished packing my suitcase, I’d forgotten what was inside. I felt foggy for weeks and weeks. My headaches got way worse before they got better. I had no energy. I couldn’t write. I was a raging monster because of the steroids. EVERYTHING SUCKED. It was two months before I’d started to feel like myself again. Note: not two months before I was back to “normal,” but two months before I could even entertain the thought that I might one day be a functional human again.

 

Our first trip after my brain surgery. My face was still round from steroids and I am, as you can probably tell, exhausted.

 

It was another year before I’d successfully baked another pie.

A lot of people write to me because they’re worried about their hair. And then they immediately start to apologize because they think it’s so ridiculous that they’re worrying about their hair after everything that’s happened. I tell them not to feel bad about it. Because the thing about brain surgery is that the hair is the first thing people see. It’s a tangible, incredibly visible indication that something big happened. In that haircut is the evidence that we are not back to normal. It’s not just about the hair – it’s about being sick and having tumors and having brain surgery and being scared and wondering if we’ll die and wondering what will happen to our families and wondering if we won’t be ourselves anymore.

It’s never just about the hair.

I gave myself a year – an arbitrary date by which I told myself that things would be back to normal. Doing so helped me maintain my sanity on those days when I forgot basic words and the names of friends I’d known for years. But a problem occurred when I reached that date, and things still weren’t back to normal. That’s when I realized: they might never be. I cried a lot during those months. I cried when I learned of the death of a friend to brain cancer. I cried when I learned that my neurosurgeon had died of another type of cancer. I cried because I felt guilty for being sad. Relatively speaking I was fine, and yet I wasn’t.

The thing about brain surgery is that, for many of us, we’re so focused on getting back to normal that we forget to grieve. I told Rand, months after the fact that “I wish I hadn’t needed brain surgery.”

And he stared at me for a beat before saying, “Well, of course.”

It was such a simple, normal way to feel, but I’d not given it any credence. Long after my surgery, I started to. I accepted that even though the outcome was ultimately as positive as I could have hoped for, the experience still sucked. And after that, things slowly got better. I can’t say if I just start to accept that things were different now, or if I actually did return to some semblance of normality. I think it was a combination of both.

I’m not the same person I was before my surgery – there is a dent in my skull and a cadre of experiences that suggest I never will be. But the people who know me see me uninterrupted – there is no line of demarcation between old Geraldine and new. There are days when I don’t think about my surgery at all. Sometimes I genuinely forget that it happened. Mindy was right – it’s now just a weird story, and one I tell far less often than I ever imagined.

My nephew was born right after all this happened. I suppose one day I’ll tell him about it. Or perhaps not.

And so when people ask me when things will get back to normal for them, I don’t really have an answer. But the thing is, one way or another, you’ll get there. You’ll either find way your way back, or you’ll accept that things have changed and that normal looks a little different now. You just need to give yourself time. Time to heal and grieve, time to grow out your hair and to screw up a couple of elaborate desserts.

Last week, I made a key lime meringue pie.

 

I brought it over to Mindy’s house. We, along with our beloveds, ate more of it than we probably should have, while we talked about all manner of things. My brain surgery never came up.

Leave a Comment

  • Jane Klein

    Love this. Your writing makes me so happy. xo.

    • Everywhereist

      <3 <3 <3

  • Jennifer Roberts

    That is a beautiful pie. Which is hard for me to say, since pie is, after all, the worst of all desserts. Fightin’ words, I know!

    • Everywhereist

      Oooh, hell no, Jen.

  • Lori Baker

    It’s been 6 1/2 years since I had cancer and there are a few things happening to my body because of the treatment that are annoying (I’m blaming them all on cancer and not getting older), and I would say I’m definitely not the same person and I’ve come to see that as a blessing.

    I remember being so incredibly tired from radiation but determined to keep working. I worked from 5am-noon every day of the two months I had radiation and then sleeping the rest of the day away. My boss tried to gently remind me that I should take time off, but backed off and assigned someone to help me when I wouldn’t hear of it. I remember telling my friends I was too tired to go out and did not feel selfish for taking good care of myself (my therapist told me she hoped I would keep that up and so far I have).

    I also now know it’s 100 times harder to be the family member or friend of someone suffering from cancer than it is to be the person suffering from cancer. My sister-in-law was diagnosed with breast cancer 1 year after I had cancer and I was thankful I could take her daily calls as she freaked out over the month they told her to wait until they can do a biopsy (call back and tell them you can’t handle the wait – they will get you in sooner), when they called to tell her it was nothing and she would have only had to worry if they told her she had to come in, then called her back to tell her they didn’t get enough cells to properly do the biopsy and she would need to come back, then scheduled an appointment rather than say anything over the phone. I could tell her to let her friends bring food and help her because the people who love you need something to feel less powerless. My best friend still cries when she talks of feeling so helpless but not flying out to see me right away because she didn’t want to bother me. I would have loved to have her here making me laugh and helping me and I told her I would bother the hell out of her if she ever got sick.

    I also learned that the most helpful friends were ones who saw that I needed something and took care of it. Some folks asked me to let them know how they could help but that was too much work. Some friends were upset with me for not telling them I was sick in person. But I’d had that conversation with my close family and it was a really hard conversation I didn’t want to deal with anymore. So I universally said (via Facebook) that I was bad at having cancer, but that they had to forgive me because I had cancer. It became a running joke that I should get the last cookie because I had cancer, choose the restaurant because I had cancer…on and on for at least 1 year.

    Now when referencing that time I typically talk about the summer I was sick. I don’t like using the cancer card, but I don’t mind talking about it either. The scariest thing I could imagine happened to me and I survived and it help me see what I wanted, what I would no longer put up with and to enjoy every last piece of it forever.

    • Everywhereist

      A friend of mine just got through her chemo treatment a few months ago, and we got together for lunch. I picked up the bill and screamed, “THIS IS YOUR LAST FREE CANCER LUNCH” which I think turned a couple of heads. 🙂

  • Thank you for being you and for writing about being you. You’re really good at it. <3

    • Everywhereist

      Stop it. 🙂

    • eva jani.

      I agree with this comment in every way. 100% thank you for sharing with the world (and me, indirectly) about your surgery. It has helped me feel as if I’m not alone anymore, that I have someone’s words that I can read and say, “that’s exactly how I feel,”
      I hadn’t felt that since before my surgery, and I just wanna sincerely thank you.

  • jonathanwthomas

    This totally speaks to me. I had a minor surgery last year (it wasn’t in my brain but it was in a more embarrassing part of the body) but it was disruptive enough. Over the last year, I’ve started to think of things before and after the surgery. The process, while I ended up being fine, was traumatizing. Most especially the tests to diagnose the problem. No one tells you about that or warns you, I still flinch at the thought of the whole process. I have a hole in my mind from when the surgery took place and that is very disconcerting. And though it was never in question, I found out how much my wife truly loved me as she nursed me back to health (and had to do disgusting things like change dressings). I’m still by and large myself, now I just have several days of experiences I can’t forget and still bother me when I think about them. It sucked. It made me scared for the future as I age, because the number of surgeries I’ll need as I get old only will only increase. All I can do is try and stay as healthy as possible to avoid it as long as possible.

    • Everywhereist

      I always tell people that a year, in the course of your life, is actually an incredibly small amount of time – it wasn’t that long ago by any measure. But, yeah, Rand’s goal is very similar: try to stay healthy for as long as possible so we have more time together.

  • You’re strong, undeniably talented & such a way with words. 🙂

    • Everywhereist

      <3

  • J Tidrick

    You are amazing and brave and still true to yourself and the love that you and Rand share makes me swoon. One of these days, on the way to your beloved Ashland, your are going to have to stop In Cottage Grove (well, if you are driving) and I will point out some fabulous eating establishments. I’m not sure I could join you, because I tend to be a Geraldine fangirl
    (fanwoman?)- and would probably make a gushing fool of myself. Here’s to another 70 years of all things Geraldine and Pie

    • Everywhereist

      I think we’ve actually stopped Cottage Grove before – there’s a few cute little diner-style restaurants there, right?

      • J Tidrick

        yes, Buster’s Main Street Cafe is great as is Jack Spratt’s. Both are located on our little Main Street downtown area

  • Steph

    Um…that ’round face exhausted’ picture of you is GORGEOUS!

    I love the way you convey your feelings, seemingly, effortlessly.

  • Scobb

    I love your blog. I happened upon it years ago and it always made me laugh. When you wrote about your brain tumor the first time I was so surprised. I also had a brain tumor (Jan 2012). For some reason it connects you to people. No one else can understand what you have been through. Thank you for sharing your story. Thank you for telling others it’s ok to not feel “normal”. It took me at least a year if not longer to even get a small sense of normalcy. It is very frustrating to not remember what a chair is called. It is comforting to know we aren’t alone in our journey!

  • Jenn P.

    Is it creepy that I totally remember when you announced Steve’s existence because I was NOT OK with the possibility of something harming you? Anyway, I promised myself that I’d stop writing you fan mail, but, alas, here I am again. I had a car accident almost a year ago. It was gnarly and I broke a knee, but I’m alive. Despite being “ok” and able to “walk away” (on crutches) from it, I’m not the same me I was before it happened. I keep telling myself that once a year passes it will go away and I’ll feel like the old me. It felt great to read that though you’re “ok” and years out from surgery, you still have these kinds of feelings, too. Your way with words never ceases to amaze me!

  • Victorian

    I have been following you on Twitter for a month or two, and while I have visited your website a couple of times this is the first time I’ve come across your adventures in brain surgery. Yikes! From my rather distant, short, and Twitter-distorted perspective, I’d have to say that right now your brain surgery does not seem to be the “defining moment” of who you are; from what I’ve seen you are a traveller, an author, and a very active member of the resistance. Right now the brain surgery does seem to be an experience of yours that comes out of left field – “You whaaat? How did I not notice that?” But obviously it is a part of you, and the narrative of that has been meaningful to many others. Thank you for this. You have a gift. I’m looking forward to reading the book when it comes out. – Bruce in Victoria BC

  • This was such an incredible post to read, I hardly know what to say. Thank you for sharing so much of yourself with the world. I hope things continue to get better and better for you.

  • Although it’s not brain surgery, my mom had a double mastectomy in 2015 due to breast cancer, and underwent chemo as well. Shortly after that, my dad died, and then my mom had to have thyroid surgery because life apparently decided things weren’t sucky enough for her yet.

    I sent her this post.

    Because it’s never just about brain surgery, either.

    Sometimes it’s about being the person who is out there saying, “it’s going to suck and suck and suck and then one day it won’t be so bad and you won’t be quite sure when that happened.”

    • Everywhereist

      A friend of mine who had a mastectomy told me that this post was applicable to not just brain surgery – which I hadn’t considered (stuff like that always seems bigger and more significant that my little old surgery). I can’t imagine how difficult all of that must have been for you and your mother. I’m so sorry for your losses, and I’m glad that the two of you have each other.

  • Violet

    Thank you for writing this so much. I’m one month post-op from my brain surgery and trying to go back to university and trying to force everything in my life to be ‘normal’ again and reading this… it just so perfectly explains a lot of my feelings and I relate so strongly you made me cry 🙂 but thank you so much, that ‘I wish I’d never needed brain surgery’ line is just… and the fact that it doesn’t come up until so much later, I have so actively been ignoring that I didn’t even realise but… you’re right. Thank you

  • Stephanie Moore Spillmann

    Whether it’s cancer, divorce, or the loss of a child…somehow grief forever puts a benchmark in your hourglass of “before” and “after.”
    “…for many of us, we are so focused on getting back to normal that we forget to grieve.” Hit me like a ton of bricks.
    I will never be the same Stephanie that I was before I lost my 21 year old Caroline, yet I haven’t been kind enough to myself to grieve the death of me.

    • Everywhereist

      I am so, so sorry for your loss. Remember to treat yourself with the same kindness you’d treat a friend. You’d give them space to grieve. Don’t forget to give it to yourself.

  • Michelle Mae Semidey Kingsley

    I had brain surgery twice on my cerebellum first surgery 13 hours second one 8 hours. Second time was so much scarier than my first being that I had my first son. I was scared of leaving him motherless and leaving my mom daughterless. Both times with my surgeries I felt more scared for my mom and then my mom and son than I did for myself. First surgery I was 17 took me almost a year to recover. I had to finish my Senior year via homeschool. First two months I couldn’t walk, shower, eat, just about anything alone couldn’t be done, it was terrible. Second surgery took 6 months to recover. When I went back to work people kept asking me if I was okay and I wasn’t . I would always get really mad inside but respond really nicely “yea I’m fine yea I’m okay” but I wasn’t. It’s been 14 years since my first surgery and 10 years since my second one and I still don’t feel “normal”. Sometimes I walk and I’ll be off balance or someone will touch the back of my head and I feel hollow. Its been 14 years and I’ve done and accomplished so much but, I still don’t feel normal. In lots of ways I feel violated by my brain tumors and I don’t know if I ever will know normal again.

  • Sanika Kadam

    I had a craniotomy 6 months ago for a tumour near thalamus. Because of the tumour I had to give up my admission to a post grad programme in Belgium. The hardest part was cancelling the tickets and visa application and housing contract since the tumour was detected 5 weeks before I was supposed to fly. Because of a small part of the tumour that is still stuck inside, I cannot use my right hand properly (the tumour had caused paralysis in the right hand side of my body). I will have to change my career from biotechnology to something that doesn’t require extensive expertise in fine motor skills. It sucks. But hopefully I will be able to write something like you did, a few years from now. Like you, I have a few blog posts in which I wrote about the tumour.. https://thesubtlecon.wordpress.com/2016/09/16/of-broken-screws-emergencies-and-the-day-i-found-patience/

    I wish you the best! You managed to put all my emotions into words. And I too wish that I hadn’t needed the surgery in first place..

  • Chris Beauchamp

    A kindred after a diagnosis of glioblastoma madness! What the hell happened to me and why? but I guess it really comes down to Why Not Me? All the bullshit of trivialty melts away and it is a crystaline vision of reality that your left with. Sort of like a gift of sorts. Wrapped in a shitty box!!

  • Elisa Enright

    I am amazed when I read how people come out of brain surgery without deficits. My son has deficits because the tumor was on his brainstem. Balance, double vision and facial paralysis are his main problems but also changes in personality and depression. I miss him, his joy, laughter, humor, energy. You are very lucky and yet I feel we are too. He could have died but he is here and working hard to recover what he can.

  • Dee Cardenas

    Writing now as DeeV2.0, I can certainly relate. I’m an aneurysm survivor: crainiotomy, shunt install and all. Your experience: the fatigue, the fuzzy brain, the forgetfulness (I forget if you mentioned this in your blog but I’ll assume 😉 ) are all things so very familiar. I’m almost nine years out. This past week I had the opportunity to be with my husband’s family, one who is a neurosurgeon. He had the audacity to tell me it was an emotional issue: all in my head (well, he got THAT right). I feel I’m a leaky sink and the plumber is telling me I’m fixed, stop whining. I do spend time on the survivor sites, although I’m not as active as I was. My experience is that no one understands a survivor like another survivor. I have never found words to help a non-survivor understand how different I feel, when on the outside (and now that the worst haircut of my life has grown out). Thanks for the post: good luck with your continued recovery. May you find peace among pieces.

  • Arturo Garcia-Calderon
  • Erin Bents Martinson

    Thank you , thank you, thank you (I probably will not be able to write that enough). Here I am in the first 6 months (actually it’s only been 5) since brain surgery and it sucks. A huge cyst in the middle of my brain and loss of memory of the recovery time, and being a mom and living far from family and few friends my own age and I am lonely and everything seems hard. I know I have a tough road ahead for awhile, but I am so glad to not feel so alone in the process.

  • Antonio Anchinges

    Good to hear that your ok about 3 yrs ago August 29,2013 was my removal of brain tumor meningioma after 2 months I am back working and need to walk 30 min. on my job at Chicago downtown. well until now my strength was not hundred % back, I am easily be tired but its okay just need some rest . and glad that I do not suffer vertigo again. Just be happy God is in control.

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