This One Is For Us.

We, the survivors.   Brain aneurysms.  Those little “bubbles” that form within the arteries/vessels in our brains.   Some of ours decided to burst.  We then suffered what’s called a subarachnoid hemorrhage.  We survived strokes, seizures, emergency (probably more often than not, since these “bubbles” usually go unnoticed until/unless they rupture) brain surgery.  If we were fortunate enough, our aneurysms were caught before they could rupture.  However, we are all on an uphill battle, whether we ruptured or not.  We are strong.  We are fighters.  We are here to speak and hope that you understand what we’re trying to say.  Here are some things we would like you to know.

Just because we look normal doesn’t mean we feel normal.
You can look at us from the outside, and we probably look just like your average Jane/Joe.  However, if you could see our brains and had any understanding of what a normal brain looks like, you might see that in comparison, we are no longer normal.  We probably sustained some damage from the stroke, and maybe even the surgery.  Blood pooling in a tight space like your skull is not good for the brain.  Surgery helps, but surgery in itself is also taxing on the brain and the body.  Your brain controls your body, and once it’s injured, something in your body becomes injured too.  No matter how normal we may seem, believe us when we say we don’t feel normal.

There is no such thing as normal.
We tire much easier than we used to. We have to avoid certain lifestyles. Sometimes we feel everything, other times we feel nothing.  Things can change quickly and often.  We forget words in the middle of sentences. We forget dates.  Sometimes we just really don’t care, and we don’t want to pretend to care.  Depending on which area of our brains we suffered the most damage, that’s where we will have the most difficulty as we try to recover some normality.  Life suddenly changes to a “before” and “now” mindset.  Before is before our brains decided to explode, and now is how we have to live as survivors.  We know we’re “not the same,” and we don’t need your reminders.   Trust us, it’s frustrating (and probably more so because it’s actually happening to us) for us, too.  Please be patient and be kind with us.

Unless it’s happened to you, no, you don’t understand.
No matter how much you want to understand, you simply don’t.  Accept that truth, just like we do.  It doesn’t make you a bad person or any less of a person because you don’t truly “get it.”  We applaud you for making attempts to understand, though,  because there are plenty of people in this world who lack that sort of care for others. It isn’t that we don’t appreciate your concern, compassion, or sympathy.  We find it endearing that you take the time out to really inquire as to how we’re doing, and offer a helping hand.  Thank you for that.  But please, do not tell us that you understand when you do not.  You cannot empathize with us, because you have not walked in our shoes.  However, please know we really do appreciate that you reach out to us in sincerity as we try to regain our footing in this life.  Oh, and believe, we hope you never do have to truly understand what this is like.  We probably wouldn’t wish it on our worst enemy.

Sometimes, we just don’t want to talk about it.
Yeah, we know “it’s crazy,” we lived it, remember?  Sometimes we want to focus on other aspects of life that aren’t so depressing as “most people don’t survive something like that.”  Sometimes we want to try to live now like nothing happened before.  Of course, we could never actually do that, but we’d like to pretend, okay?  If we want to talk about it, we will.  But please don’t bombard us with questions or assume that we’ll always want our illness/injury/symptoms/story to be the topic of conversation.  It gets old, fast.  Trust us.  So when/if you see us start to look uncomfortable because you’re broaching this life altering subject once again, to the newest person who has yet to hear our story, try to realize that you’re overstepping a boundary that we may not want to cross.  We wake up everyday with a reminder of it all, we don’t want to spend each day focusing on it, but we would like to focus on how we move forward now.  We’d like to live for now, but remember where we were then.

Sometimes, we will panic.
There will be times where a twinge of pain, some tingling or numbness, or just an everyday headache will send us into  full on panic mode.  That does not mean that we’re succumbing to fear, but it does mean that we remember where this all began, and we are hyper-vigilant of it happening again.  Some of us even have PTSD from the traumatic experience of the rupture itself and the following days.  We know it’s probably not as serious as the rupture was, but it does not stop us from feeling that moment of fear until we realize we’re not in a threatening situation.  This usually eases up as time passes and we adapt to our new lives, but just try to understand why we are reacting this way over “just” a headache.  It all started with “just” a headache, too.

Sometimes, we don’t know how to respond to “how do you feel?”
This.  This has got to be the most well meaning and altogether most annoying question that we hear.  Why?  Because, we don’t  know how we feel!  Some days we feel “normal” again, like before any of this ever happened.  Most days, there is always some constant reminder of what happened, you know, just in case we ever try to feel normal again.  A lot of days we’re just “here.”  Not feeling great, not feeling terrible, just feeling present.  Some days, we honestly don’t have an answer as to how we feel.  We feel blessed that we survived, but we also mourn our former lives.  We feel robbed, except no one could ever quite capture the suspect, or reassure us that we would never be robbed again.  We feel afraid and fearless.  We feel far too old, and like a newborn.  We feel strong, and weak.  We feel like walking, talking, breathing, living oxymorons.  We survived something meant to kill, but we’re still here pressing on.  What could be more contradictory than that?  We’ll probably just smile and say “I’m okay,” though.  Most days we are just “okay.”  That’s an okay response, too.

The level of fatigue is (literally) exhausting.
Once again, unless it’s happened to you, you don’t understand it.  This is like reverting back to your infant days, except being adults, we are expected to behave accordingly. We need our naps.  Even if we think we don’t need our naps, our bodies and brains need  that down time. Our best chances at healing are when we aren’t having to use so much brain power to run our bodies.  When does that happen?  When we sleep.  No, we are not being lazy.  We are exhausted.  Just give us time to rest our brains so we can be refreshed, and continue moving forward.  Some of us might even break down into tears (I confess, this happened to me a lot in the earliest days of recovery) if we become too overwhelmed to function and cannot have that nap to recharge.  Naps are crucial and welcome.  At least until we figure out this how this new normal works.  Even then, though, we will probably need more rest than the average person.  Remember, we are running on an injured leg, here.  Except it’s our brain with the injury.

Sometimes, it still stings.
No matter how far we are from when “it” happened, it still stings to think about.  Many of us look in the mirror and truly wonder where we went.  We aren’t as happy as we used to be, but at the same time we are much more joyous than ever before, content to just be here, to just live a simple, uncomplicated life.  We wonder if we will ever “truly” live again, but we are grateful each day that we get to live because we are always aware of how quickly life almost escaped us.  Those pesky barometric pressure headaches some of us have to deal with are reminders.  Who needs a meteorologist when you can have brain surgery?  Trust us, we can instantly tell when the pressure changes, courtesy of an intense headache. The pills, pill boxes, alarms in phones, notes scattered around the house/car/office are reminders. The incision site’s soreness and tenderness is a reminder.  Whatever deficits we survived with remind us everyday of how drastically our lives changed.  It still stings.  We are grateful to be here, but we  can’t just “let it go” that we have lived two lives (and possibly more) in one.  That’s why we like to take things one day at a time.  We don’t know what tomorrow holds, and we’re done with yesterday.  Let us focus on here and now.  Don’t inquire too much about the future, but also don’t assume that we are “over” the past because time moves on.  Survivors of  serious illnesses never really get “over” the illnesses that change their lives, they just learn to live for today as the blessing it is, be grateful they lived another yesterday, while hoping for a new tomorrow.

We need and cherish your support.
Seriously, thank you.  Thank you for treating us as normal people, while still tending to our needs. Thank you for reminding us of just how far we’ve come, and just how strong we are on those days we seem to forget. Thank you for trying to make us laugh.  Thank you for looking out for us, while not hovering over us.  Thank you for driving us around when we lost our driving privileges.  Thank you for offering to help in any way you can, even if we may or may not actually ask you.  Thank you for your prayers.  Thank you for saying you’ll be there, and actually being there.  We love that.  It’s so calming to know that there are people who will actually come through on the words they say.  We don’t appreciate having those people who say they’ll be there, but suddenly disappear once they realize things aren’t the same.  That’s okay, because surviving something so catastrophic has taught us the true value of life and life-giving relationships.  If you cannot offer us that, we will feel no qualms about cutting you from our lives.  No, that doesn’t make us “cold-hearted,” we just know the value of real life, and we don’t have any reason to expend precious energy on relationships that aren’t mutual or true.  We need your support.  We cherish your support.  We value your support.  For those of you who truly support us, thank you.  We could not soldier on without you behind/beside us.  We love you.  Thank you.

Author: Robin

My name is Robin. I’m a Texan. An introvert. Curious, optimistic, loving, caring, and a fighter. I am both quiet and loud because I don’t say much, but when I do speak, I mean it with my entire soul. I’m extremely honest, and sometimes that comes across as harsh, but I’d rather be offended by the truth than protected by a lie. I may be petite, but I have the heart of a giant. I love music, laughter, solidity in friendships & relationships, words, books, sunshine, large bodies of water, the color yellow, and those moments in life when everything just feels right. Here, I’ll share with you my journey throughout this crazy life I’ve been blessed to live. My faith comes first, then my family and friends follow suit. I’ve been tested many times in my life, and I continue to overcome all odds. I will always believe life can be lived well when you keep the faith, keep the fight.

46 thoughts on “This One Is For Us.”

    1. You’re very welcome!! I’m glad that you are able to relate, and hope that you will share this with others if you feel so inclined. I believe that the more we all are able to understand, the easier the transition will be into this “new normal.” Keep the faith, keep the fight! :)

    2. Robin, You put how most of us feel in print. I was talking to a friend, and cried for the first time since my craniotomy in Jan. . I could not put into words, how I am on the inside. I too feel the great blessings of God. I was diagnosed with Lymphoma in Dec. 2012, and in the testing, was found to have 3 brain aneurisms. I feel like the most blessed person because of this! Yet the change in my life is hard. 2 surgeries, and cancer treatment, I am ok! I give all the Glory to God. Thank You from the bottom of my heart!

      1. Hey, I am just now seeing your comment!! Wow, you are a fighter indeed :) God is so good to us, isn’t He? Even when we don’t understand the pain or the purpose, please believe He has a Master plan. You keep fighting!! Thank you so much for sharing a piece of your story with me, and you are very welcome!!! God bless you!

  1. This tells exactly right. Pardon the pun but you hit the nail right on the head!!! Thank you for putting into words what I could not!!!

    1. Hahah! I love to write, so I also love plays on words. I will always accept a well timed pun :) You’re very welcome!! Feel free to share this if you’d like to! The more we can all understand, the better off we will be. Keep the faith, keep the fight!! :)

    1. You’re welcome! No, I don’t mind if you share it on the AVM site. This is for anyone who has to live with a brain injury. :) Thank you for asking first, though.

      1. Hi, Robin! Thanks for your permission! I will be adding it to the link directory now. :) I had another request- would you be wiling to give us permission to REPOST this entry onto http://avmalformation.org/you ? You will obviously be given full credit, along with the URL to this page. (You can see how it’s been done with other sources here: http://avmalformation.org/warning-signs-symptoms-of-brain-aneurysm/ ). We would appreciate it VERY much, because I think it’s something that should be read by everyone who is going through this.

      2. Absolutely, you’ve got my permission to share this. I don’t mind, that’s why I wrote it. I want to educate others, and the more we talk about these invisible injuries, the better off we will all be. Thank you.

      3. You’re so very welcome! Information like this needs to spread like wildfire. :) I very well could write a blurb for the family and friends section of the site, I will be thinking about what I could say. Thank you for the opportunity!

  2. Wow!!!!! Robin, you are truly an amazing, articulate, bright young lady. I’m so, so proud of you. In spite of all you have been through, “you keep your faith, and your fight”, You inspire me sweet daughter. I’m reminded of the words I’ve spoken, ” I do not understand”, well, I may never understand, but one thing I do believe is God has a perfect plan and a purpose. Romans 8:28 declares, ” For all things work together for good”, We know that all things work for good for those who love God,* who are called according to his purpose”. Our fickle and finite minds do not grasp this most of the time. I know that what you have gone through has been a challenge, and it has not been pleasant. I has been very, very unpleasant and very painful to witness your struggle. I have even prayed to God to let me go through it. Just because, I see my baby-girl, hurting and my motherly instincts and intuitions take over and want to protect her young. I’m learning to release my baby-girl into the hands of her all powerful, all wise, loving Father that knows best and loves you more than myself. You are my bright and shining star Robin. I love and applaud you. God bless you

  3. this is so spot on these are some of the words i do say to people i also hate it when people say god you look great when alls i want to say is you dont no how im feeling inside i be sharing this thanks

    1. Exactly. Glad you can relate, also. I wrote it for “us.” Hang in there! Keep the faith, keep the fight!

    1. Thank you very much. Yes, it is the “new normal.” It still takes a lot to get used to, and never certainly feels certain. Just have to do what you can with what you’ve got. Be kind to yourself, and educate others as much as possible. That was the reasoning for me writing this blog.

  4. Hi Robin, so famously written; you wrote everything that I think and feel. I am so grateful to run into your blog. I will definitely share with people who need to be informed. Diana.

    1. Thank you! I’m glad I was able to write something to which you can relate. I wrote this to be shared, so please do pass it on as you see fit! God bless, and keep the faith, keep the fight!

  5. Thank you for explaining what I guess we all feel and would like others to know. And thank you for expressing your Christian faith as well. My faith is what has allowed me to put things into perspective since my aneurysm and clippings. It hasn’t answered all of my questions but it does give me perspective.

    1. Hey! You’re very welcome :) My faith is what gets me through, I definitely would not be as strong without it. It’s even difficult with faith, I can’t imagine (nor would I ever want to know) what it would be like without faith that God has this under control, regardless of my level of understanding. Perspective is a good thing, no doubt. Keep the faith, keep the fight!

  6. Seriously you are my hero for saying this! Please contact me I am in the midst of compiling a book of AVM survivors and what it’s like to live and look so normal… But to not be. I’d love to share your story
    Ashley

    1. Hey! Haha aww, thank you so much. I just tried to get “our” message across. I had no idea that so many people would find comfort in it, but that was part of the plan, so I’m glad it’s been accomplished. That sounds really awesome, I will get in touch with you! Thank you, and take care of yourself!

  7. January 6, 2014 will be 10 years. I cried reading this, I could have written it. Thank you for saying it all so eloquently <3

  8. Thank you…have read your posts on FB, first time I’ve gone to your blog – sorry it took so long. Only someone who has gone through this could have written so eloquently about it. Thanks again, will be following your blog regularly!

    1. You’re welcome! Haha aw, it’s okay. :) Thank you for the compliment, I honestly just try to write from my heart and this is the result of such writing. That’s awesome, hope there’s something “here” for you. Take care!!

  9. My Nephew who is 25 years old and studying at the Michigan University had a ruptured AVM and has slipped into Coma. Its been 3 weeks now. Please pray for his early recovery

    1. Wow! I have a friend who had an AVM rupture when we were just 15 years old. She had brain surgery and has managed to recover to a pretty good state of life now, but not without struggle. I will be thinking of and praying for your nephew. Y’all keep the faith, keep the fight!

  10. I just wanted to say thank you from the bottom of my heart. You have explained in such a simple way what I have wanted to say to so many people. Would I want to experience this again? The answer is no and yes. Many good things have come about because of brain aneurysm like my appreciation of the gift of life. And the importance of family and friends. My life is much more simple now… Life is a precious gift now.

    1. You’re welcome! I call my aneurysm the “best worst thing that ever happen to me” because it changed so much and gave me real insight to life. I was 24 at the time, still young, but old enough to live the rest of my life differently and with a truer understanding of what matters and what doesn’t! Thanks for dropping by and commenting, and I hope all is well!

      1. Once again I say thank you. I like how you refer to it as “The best worst thing that ever happen to me.” I will use that if its alright with you. It sums it up quite nicely.

      2. You’re absolutely welcome! Sure, you can use it if you’d like! I claim it as a personal truth. :) Hope you’re well!

  11. Thank you for stating things that are so obvious to us I have given up saying I am tired & getting the one person who really doesn’t get it to understand what that means! Its not the same as having 3 kids!! You also mention those who do not suffer a rupture still go through these things, my anni was thankfully unruptured before it was clipped (6 weeks later) & I keep thinking I should be so much better now.

    1. You’re welcome!! I know it is so frustrating. I am nearly 2 1/2 years out, and I still have “down days.” Recovery is not a linear process, but more like the waves of an ocean. Sometimes they’re gentle (things going smoothly) and other times they’re rocky (not so smooth) but it somehow balances itself out along the way. Yes, I think that many people can experience these things, even if their aneurysm(s) is (are) not ruptured. It’s quite scary, honestly. Just have to try and remain positive. If people don’t understand you and you find yourself becoming frustrated trying to explain, feel free to excuse yourself. I will have to write a blog again soon to update on how I’m doing and how my recovery has shifted, but I have reached a new ground where I know when too much is too much and it’s in my best interest (for my health) to step away. You will be alright, it takes time. A lot of time, you have to be gentle with yourself!! Keep the faith, keep the fight!

      1. I’m 4 years post craniotomy so ahead of you in terms of recovery. I let things go over my head a lot more these days but that one persistent person ouwho fails to recognise my short comings is a real bug bear Shes also the one that tells me ‘well done’ when I make a social event!! I feel like a dog that’s been patted pm the head.

        Its a funny old business recovery but I’m in a much better place now than I was 4 years ago

        Have had a lot of help from wwwbehindthe gray.net & have posted a link to your blog from there if that’s ok? Pop in & say hi if you’d like x

      2. Right! I totally understand. There are some people I just can’t tolerate because I get tired of explaining the same things I’ve been saying for the past 2+ years. It’s like “Don’t you get it yet?” Very frustrating! I’m sorry, you shouldn’t be made to feel that way. It’s an accomplishment everyday that we get through, but it doesn’t need to be treated like you’re a dog who just performed a trick. That’s condescending, honestly.

        I’m glad that you’re doing better now as time passes. It just takes so. much. time!

        I saw that there was a link to my blog, coming from behindthegray, and I’m fine with that! If the word is being spread, I feel accomplished. Thank you! I will stop by there sometime! Take care of yourself!

  12. After my SAH my eldest sister said “Win I am so proud of you” and I say “You helped me Sylvia singing to me when I was out of it” she is pleased I am walking baby steps, families are so important to us.

    Sing, smile and be happy for every day and Thank you for making me cry and smile at the same time. (multi tasking next)!

    Lovely words Robin xx

    1. That’s a lovely bond to have with your sister. The support from our families and friends is so crucial to our recoveries!!!

      :) I try to smile at something everyday, and I definitely look for things to make me laugh when another barometric pressure change occurs and leaves me with a nasty migraine. As crucial as our families and friends are, it is also vital to remain in positive spirits as we embrace our “new normal.” You keep going, friend! Aww! I’m glad that I could lend you a smile and some tears. That’s sweet! You’re welcome!

      Keep the faith, keep the fight! :)

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