Seriously felt this way so often “in the beginning.” Some days I do still feel this way. I still miss my “old life.”^That graphic came from TBI Hope and Inspiration which is pretty awesome, so check it out by clicking on the link!
If I had to describe the way that I felt as we were in the car and I knew I was going home, I would say grateful, but terrified.
The only thoughts coursing through my brain were: “Okay so now what?” “Am I going to be normal now?” “What if something happens to me and there aren’t any nurses around?” “Am I just going to die?” “Is this tingling sensation normal?” “Should I be crying in the middle of the aisle at the grocery store because it’s too loud and I’m too tired and I just want to go home?”
When I got home, I was bombarded with greetings from people. People that I don’t even know knew me and would approach me asking me questions, I didn’t feel like talking. I was ex-hau-sted. It’s another level of tired. I guess you could equate it to working a 180 hour week or something. I don’t even think that does it justice. The day that I came home, we had to stop and fill my prescription for my pain medicine (because that’s the only medicine I was discharged with… No anti epileptic drugs or anything else. Just Norco!) and get some food. People were seeing me, asking me questions, asking my family questions and all I could do was pretend to feel awesome when I just really wanted to get away from fluorescent lighting and go lay down. My head hurt, the lights hurt, the sounds hurt and it was just too much at once.
It’s been 19 months today (I’m writing this on Friday night and scheduled it to post on Saturday evening) and I’m still that way. Too much external stimulation makes my brain just kind of shut down, in a way. It just has to focus on one thing at a time or I get really confused, irritable and lose focus.
I remember everything being “on steroids.” My hearing was magnified times 10,000 it seems!!! I could hear a watch ticking across the room. Seriously, like it was sitting right next to me. It was so surreal and seemed like living in some alternate universe. Sounds aren’t as magnified anymore, but I am still (and I always was, even pre-rupture) very sensitive to sound. Colors were brighter, I hated (and sometimes still do) headlights on the cars. With oncoming traffic, I wore my sunglasses, even at night. No, that is not a fashion statement, it helped (and sometimes still does help) me focus better. I keep the brightness on my phone (and sometimes computer) turned down as low as it can go, because the brightness hurts my eyes. Maybe my eyes are still mad from all of those hourly wakeup calls and checks for pupillary reflexes hahah.
I was home, and it was great, but I was still terrified that something horrible would happen and I would just die. As I mentioned in an earlier post, having this smart phone has been awesome for keeping in touch, but it has also been detrimental to my health. I would read, and read, and read for hours about all things aneurysm/stroke/brain injury related. If there’s something to know, I probably have already read about it. Every ache and pain would send me into a slight panic attack because I would think it meant imminent death. Surely you can’t be saved every single time, right?
Enter: health anxiety. On a severe level. I was scared to take a shower alone, I was scared to take a bath alone, I was scared to sleep with the door shut, I was scared to not have my mom around to take my vitals (you really get used to that when they’re constantly being monitored while you’re in the hospital for nearly half a month), I would write down everything. The time I took the Tylenol, the time I took the Norco (hydrocodone/acetaminophen), the time my mom checked my o2 stats and blood pressure (and what they were), what time I ate, what I ate… Everything. Because if something went wrong, I wanted to be able to know exactly what was in my body and what amounts at what times, and I wanted to be in a position to be able to “speak” for myself if necessary. Obsessive fears with health. It isn’t as bad anymore, but I do still have my days. When I get a barometric pressure headache that’s just a little too intense, I get a little panic-y that it’s something more serious than “just” a headache. After all, this all started with “just” a headache.
I was terrified (but would rarely show it) probably every single day for a good six to seven months, I’d say. I couldn’t sleep at night because I’d be on the phone reading. My dad would get so mad at me and say “Robin, put that phone down or I’m going to take it away from you” because he was tired of seeing me fighting sleep and reading horror stories. I would cry because I just wanted knowledge and to be prepared because “nothing like this is ever happening to me again” was (and still is on certain levels) my mindset. I would cry because nobody ever tells you that the “new normal” isn’t really normal at all and you’re not prepared at all for a world outside the four walls of the hospital(s) you were enclosed in.
The reason why they don’t tell you is because, they don’t know!!! Nobody knows, and that’s the craziest thing about it. They know how to clip, coil, staple and stitch you back up, but they don’t know what to tell you about after you go home. Nobody really gives out information on support groups, nobody tells you that you are going to go through a process of “recovery” that is more like grief after losing a loved one (your old self–and that really is what it is) instead of “okay, you’re good to go now, call us if you need anything!” It’s not that simple, and you can believe that we all wish it was that simple!
It’s not that simple. You learn as you go, and I have learned that this (recovery) process is not a linear process. I expected recovery to be like a straight line. You reach this milestone, then the next, then the next until one day you’re “all better.” Hahahaha. Yeah, right!! That’s funny. No, this recovery is like a bouncy ball that jumps from surface to surface, and nobody could tell you where it will land. It’s unpredictable and you just kind of hang on for the ride.
This happens to look sort of how recovery feels. All over the place and just when you’re upright, you’re flipped upside down again. Better get a tight grip!!People expect brain injury/stroke/brain trauma recovery to be like a recovery for a broken bone. You set the bone and put it in a cast, the broken pieces fuse together and everything is just right, right? Wrong. Not even close to being right, kind of wrong. F- on a scale of A+ to F kind of wrong!!! It’s tough to grade so harshly, but that’s the only way I can think to word it to where people might begin to understand. It is not like that. First off, the injuries/deficits/disabilities we are left with are often invisible. That poses a major problem in its own right, because if you “look normal” then you “are normal.” No, kill that misconception right now. You don’t know what someone is struggling with on the inside, so assume nothing about them. When something traumatic happens to someone’s brain, I don’t care how “normal” they appear to be on the outside, there is something that doesn’t add up like it used to, on the inside.
I have had several neuropsychological tests done and they all show certain deficits/disabilities that I did not have prior to this incident. I look normal except for a few scars, but my brain does not function like it did prior to this event. I have had to try to process that and accept it. The task of explaining it to other people (when the situation arises) is where things become tricky and irritating. I don’t dwell on it or try to use it as a crutch, but it is a reality that I live with every single day, so you need to understand that and work with me, as well. There are things that I will never be able to do again like I could “before,” and I still get upset about it sometimes.
It’s just entirely frustrating sometimes, and some days are better than others. I have mostly good days, a few great days, but I do still have bad days where I just kind of wish none of this ever happened to me. The only thing that keeps me going is my faith in God and that He can use this for good (Romans 8:28) and I have seen evidence of Him using it for good, because I know I couldn’t have done it on my own. I love knowing that I can (and am) impact(ing) others by being candid in my journey and I’m not ashamed to say that I have a brain injury. I am not dumb, I am not incapable, I am not less than. I am a survivor, not a victim, and I demand and expect to be treated as such. I know firsthand that life is way too short to expend time and energy on anyone trying to bring me down, and I have zero doubts/regrets about cutting ties with those people. See ya later. I will forever fight for what I believe in, because that’s how I have gotten this far. I believe in a good life, even if life doesn’t feel good… That’s why I fight for it everyday. :) That’s just who I am, who I was before, and no brain injury or deficit will change that!
Fellow survivors, half (or maybe 40% because it seems like recovery is 60% haha) the battle was won the day you left that hospital. You may be going through it now, at home or in therapy, or both… But you keep fighting!! I know the road is long and winding. I know it’s tiring. I know you want to just give up. I know you want to scream, throw things, break things, and curl into a ball and bawl your life away. I know. I’ve been there. But you are here for a reason and you do still have a purpose. Don’t give that up. Don’t let this beat you, because you already beat it when you survived!!! There are many before us who passed on, there have been many since we were affected, and sadly, there will be many more. I seriously just want to encourage you all to keep the faith, and keep the fight. That’s my life motto, and I carry it with me everyday. It cannot stay dark forever, because the sun has to rise again. Find your peace, and find it daily. Get quiet. Dance around. Laugh. Grab a favorite drink with a good friend. Read a good book. Watch a good movie (if you can tolerate it, sometimes going to the movie theater gives me a headache, I know! Haha), feed yourself well, sleep well. Go for a walk. If you believe in God, pray. Seek Him and ask Him to better you through this process. Let Him work. If you do not believe in God, but you want to, you can still talk to Him. Just let Him know that you want to know Him and would like to give your heart and life to Him. He will be there for you. Do something active. Make a difference in someone else’s life, even if you feel like yours has been stolen from you. I get it, trust me, I understand. You can still live, it just has to be a different life now. Do something creative. Turn on some good music and just listen to the words and soak them in. Do anything (as long as it isn’t illegal haha) to keep yourself going. Just, whatever you do, do not give up.
It’s nearly midnight now (Friday night) and I have this post scheduled to publish at 7:15 on September 7! I am about to go to sleep because I have to work tomorrow.
Goodnight, y’all, and I will keep the posts rolling. :)
Faith, by fire. 