The loss of independence is something that is so difficult to deal with after experiencing a ruptured brain aneurysm/brain injury/brain trauma. After surviving surgery and being monitored in the hospital you’re good to go, right? Wrong. No. Think again.
Maybe it would be different if we were at all prepared for the road ahead of us, but we weren’t. I wrote about being terrified in my last post, and now I want to share with y’all how difficult it is to be a child in an adult body. That’s honestly what this experience is like. You go into the hospital as an adult, and you leave as a child… In an adult body. You have to get permission for everything, it seems.
Everyone is on guard about everything. For the really independent types (*cough* Robin *cough*), it becomes overwhelmingly obnoxious, fast. Back up, let me live, please. Just be there if I need you. Don’t just assume that I’m incapable of being “normal” anymore. Yes, I know I just survived something that “should have” killed me, but I’m here. Can we just figure out this “new normal” together? Now give me some space to move, please.
We need you to be there for us, not hover over us every single second.
It’s just so weird starting over with your life, in the middle of your life. Well, I was 24 when my brain “exploded,” so I’m not quite in the middle, haha but I was an adult. No adult just starts crying in the middle of an aisle at a grocery store. Why was I doing that? Because my brain was totally overwhelmed. I would go to another aisle just to regain a sense of normalcy and one of my family members would rush around the corner looking for me because everyone was on edge. Why? Because nobody really knows how you’ll be after you leave the hospital. I remember that day because I just wanted a certain soup and I couldn’t find it amongst all the soups, then all of the noise started bothering me, and awful fluorescent lighting, and I just started crying. I mean actual tears, like a toddler!!! It was embarrassing because that is so not me. Ever. That was one of the first incidents where I began to question “Who is this girl, and what am I going to do with her?”
I read up a lot on brain injuries and things that can exacerbate issues, complicating recovery, so I began acquiring permission for everything. I didn’t want to be treated like a child, but like a child, I know I needed to test the boundaries so I would know how far I could go. It was so annoying!!! “Can I have caffeine?” Let me just call my neurosurgeon’s office and speak with them. “Can I take Sudafed? I know it has pseudoephedrine in it and I don’t want to take anything that will cause my in repair brain to get overly excited. I don’t want to have a seizure.” Let me just call my neurosurgeon’s office and speak with them. “Ow! I was reaching for something in a cabinet and this canister fell and hit my head! What should I do?!” Let me call my neurosurgeon’s office and speak with them. Yes, that really happened at work one day. Prior to February 2012, I would have laughed any of these incidents off (except the crying in the grocery store haha… That just wouldn’t have happened unless something really awful had happened) and went about my day. But now I had a reason to protect myself the best way I could from the outside. I can’t control what happens inside my body, but I can control what I put into it and the conditions I place it under, externally. Health anxiety and obsession. Research everything, question everything, check it once, check it twice. Then make a move. That’s been my life these past 19 months. I have calmed down considerably, but I am still very cautious about what I take in, my stress levels, my environment, and I still question my doctors.
I was so independent that for me to have to ask for permission or be told to do/not to do something really bothered (sometimes still does bother–but I know it’s in my best interest so I’m more at peace with it) me. I was told not to drive for over a month, the day I left the hospital. I remember the first time I drove again and I took less heavily trafficked roads with my older (brave) brother, and I felt like maybe I might be okay. I remember the first time I drove at night, again. I remember phone calls and text messages “Just to check in” on me when I would go from one place to another. Stop hovering, I wanted to say! But I know this “brain bubble” came out of nowhere and nearly ended my life, so I know that those who care for me the most were just making sure I was okay.
The loss of independence is one of the first signs that life may not be as normal as you thought it would be before you left the hospital. I was ready to rock and roll, go to work full time, do this, do that. No, no, no, and no again. Sorry ’bout ya! It is so frustrating to become a child in an adult body. For those of you who have children, I imagine that your relationship(s) with them are much like mine are with those who care for me, except reversed because you are the parent. Honestly, they just want to make sure you’re staying safe, but it is challenging to adapt to “the new normal” when you’re not given a chance. That’s how it feels, like you don’t even have a chance.
After hearing so much of what I couldn’t do, I just asked my neurosurgeon (and neurologist) to give me a list of things I can do. How are we supposed to recover if we aren’t allowed to recover? It’s entirely frustrating, all the way around. I had to learn to parent myself, get in bed at this time, fall asleep by this time, wake up by this time. Everyday. It took me a good 6-7 months to get my sleep schedule back on track after that awful ICU sleep-wake cycle. I had no appetite at all for months, but I knew I had to eat. My family would talk to me about it, my friends would talk to me about it, my friends would even send my mom picture messages of my meals so she’d know that I actually ate. It was ridiculous. I lost 25 pounds! I don’t even have 25 pounds to lose haha. I am only five feet tall. When one of my closest friends saw me, she was shocked at how small I got. Well, yeah. I was in a bed for 12 days (pretty much) straight and for the first at least week of my hospital stay, I was on a liquid diet until I could swallow again. Even after coming home, I was so depressed and miserable at this “new life” that I didn’t even want to eat. Nothing sounded good, then I couldn’t keep anything down. I had horrible acid reflux every single day. I was a total mess.
Slowly, and I do mean very slowly, I began to recover back to some sort of “me.” That fiery, inquisitive, smiling, laughing, music loving, God praising, yellow is my favorite color young lady is still in there. She was just buried beneath layers of “what is this?” I don’t wish it on anyone at all, ever. A lot of writing, a lot of church and good relationships with good friends at church, talking to God and giving this recovery up to Him, a lot of music, a lot of tears, my family, my friends, and eventually therapy (I have an awesome therapist) have all played serious parts in helping me as I go through this journey. I don’t know where it ends, or if it ends, but I am stronger now than I was last year and I’m actually at a place where I can say I’m grateful for this, because of how much it has impacted my walk with God.
If you’re a survivor or a caretaker reading this, I can only suggest that you (survivor) tell the people in your life that you need their support, but you also need space to move. Be honest that you won’t do anything you’re explicitly told not to do, and be honest to let your loved ones/doctors know when/if something is off. Better safe than sorry, for real. Caretakers, thank you for loving us, but please give us space to try and navigate these waters. We know that you only want the best for us and that you are looking out for us from a place of concern and care, but we really need to be able to fight this battle for ourselves. You can fight alongside us, but trying to shelter us from everything isn’t going to help us. We will take good care of ourselves, and we appreciate your support. It really does mean the world to us.
At under 2,000 words, I’m keeping this entry “short” hahaha! That’s really all I have tonight, just some thoughts on my mind. :) Hope that y’all are all doing (and feeling) well, wherever you may be in this world!!
As always, keep the faith, keep the fight! :)
Faith, by fire. 