I have been struggling lately with the realization that even on good days, (meaning when I think I can do things the way I used to) I literally will feel ill after just a few tasks. Tasks that were always so natural, so common and things we all do just because , well, it has to be done! It shouldn't be a chores, and certainly not an "event". Bringing laundry baskets from the basement to the second floor type of task, let alone de cluttering a closet. It's hard not to get frustrated at this new "cant do much at once" me, when I was the kind of girl who could turn an outdated play room into a kids hangout in an afternoon, or clean a 3000 square feet house in 3 hours as a high energy cleaning lady.
I know that my recovery has been amazing, so I don't need reminders of that; I know it, I fully am so thankful. It didn't take me a year to walk again or to drive again like "most people", as my OT and PT told me. I am so grateful that I feel guilty! But with that, comes the feeling that I SHOULD be back to normal. Because I look normal. Because I drive. Because I walk without a limp (most days). Because I have an amazing quality of life 7 months post op. People look at me and think "Oh wow she is back to normal". But what is normal?? I don't like that word. At all... Who defines "normal"? I do understand tho, I truly do, but people who have gone thru brain surgery would totally agree with me that we are never going to be back to "normal", the way it was. Its about the NEW normal, which let me just say, is even better. Better because I know more than ever what is really important in life. I know that what as a society we consider "normal" is in fact just an opinion that we have, an ideal that has been placed in our head by this robotic society of being, and doing, what we were taught we are supposed to be/do.
That said, in working so hard everyday at my speech, my walking straight that fools my balance issues, my visions that is inconstant, my inability to use my right hand "normally" (dropping things and make pen and small object fly is a daily event) and so on... these are all things that do not "show". They have become Normal to me. Its my new normal. As normal, I mean I don't think about it. They are becoming natural, instinctive, like any "normal" thing. I wont talk about the confusion, memory loss and other things I have yet to "get used to."
The things that I truly struggle with, are things that only the people closest to me truly noticed. If I was a person that enjoyed sitting on the couch watching soap operas, let the house become a disorganised mess, I certainly would feel like I am totally back to normal. Sadly, that is not the case. Its very hard for me to see all that needs to be done and a slight attempt makes me sick, bringing back my old symptoms, plus new ones. At first, I got a bit worried, because I thought something was wrong. After I had a simple partial seizure after an attempt to jog with the dogs, I thought "oh no, is this thing coming back? is there a postpone operation problem?" but as I did some reading and asked my beloved support group friend, a dear lady sent me that letter "Letter from my brain"... and I understood right away. What I experience in my attempt to "get back to normal" is totally normal. Reading this eased my fear, but brought on somewhat of a sadness, a helplessness to realise that this is real... this "energetic, can accomplish so much in so little time" old me, is gone... at least for now. Is she going to be back? I except her to. When? I dont know. I was told that after one year of recovering, what you have not recovered, is what you are left with. However, I also know that the brain is amazing at healing itself and I will never stop trying. I cant change who I am. I feel like I am stuck in this body that is not mine. Well, i dont "think", i know it is! Its very very insignificant compared to people that are paralysed, even some with the inability to communicate. This is so common with brainstem/deep brain surgery that I was indeed not only prepared for it, but expected it, going in for my surgery. So, I know that this "energised, want to get things done" person inside me just need to accept that she can still do that, but be satisfied with doing so at a slower rate. Maybe I cant fix that basement in one afternoon, but one month is great!
All this said, reading this letter truly put things back into perspective, and its a beautiful thing :)
A Letter From Your Brain
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.