Monday, September 30, 2013

Letter from your brain

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  It's hard not to get frustrated at this new "cant do much at once" me, when I was the kind of girl who could turn an outdated play room into a kids hangout in an afternoon, or clean a 3000 square feet house in 3 hours as a high energy cleaning lady.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.

Tuesday, September 24, 2013

The guilt that comes from being Blessed

:*( Please keep this little guy in your thoughts and prayers. He is only 11 years old. He woke up screaming with the worst headache of his life. His parents knowing what it could be, called 911 right away. As they waited for the ambulance to show he was trying to speak. He felt nauseous, and he started to stiffen up and moaning low trying to breathe. On the way to the hospital he stopped breathing. He had a brain hemorrhage. A local emergency craniotomy was performed. He is still in a coma.

Here is the update from his mother:

"The doctors really don't give us any hope but we refuse to give up on our son. He is only 11 years old. Our hearts are broken, and we are so confused as what to do. I know i could never live with the fact of knowing i played God and ended my own child's life. Even the thought makes me wanna throw up. So we have decided to go the other route to give him time. Has anyone here been in a similar situation? I don't really know what to expect. I know he will be in some pain after the surgery. I just want the best for him. Has anyone had their child on a ventilator for a long time? If you have any helpful information for us please help. Please pray for our son. and follow his facebook (Roy Vasquez Jr) if possible. . Thank you"

I cant really explain how news like this makes me feel.  Every day, I feel blessed, not only to be here, but to know how fortunate I am to be here in the state I am in.  The way everything happened, the order it did… my diagnostic, my crisis, my surgery, my recovery… everything!!   I KNOW how blessed I am…

but when i hear stories like this… I feel … guilty.  Not an “its my fault” guilt, but a “why me and not others, a child??”  There are so many things that cross my mind…. How blessed I am to have found out about this time bomb before it completely explode… how blessed I was with the way everything felt into place.. the people put in my way, finding Dr.Spetzler, the timing of things… (you can read here:  a series of unfortunate events)  I feel blessed...but the more blessed I feel, the more guilty i feel, too.  

When Dr.Spetzler's assistant called me after viewing my scan, he told me that they concluded that I had a 99% chance of having a devastating hemorrhage between now, and 5 years.  They could do the surgery now, and risk major handicaps now, but death was at a much greater risk to occur if it hemorrhaged on its own.  He did not tell me what I should do as it was a risk now and not know the outcome, or just wait until it happens on its own any day and  not know the outcome.  He said "damned if you do, damned if you don't".  When he called me, it was 8pm and Jay was sleeping before he works at midnight.  At first I was shocked to have such a quick response, because I sent my MRI just 2 days earlier. (overnight shipping, at my friend’s demand)  He couldn't tell me what the best decision was. He asked me if i was having this or that symptoms. He sounded … discouraged. I could tell he didn't want to be telling me these things…  and the prognostic was grim, yet, I could tell that he was trying to tell me “do it , do it”  (the surgery) He told me that according to my symptoms, my cavernoma was very active and it would be devastating before we knew it, but it was indeed one of the most difficult situation to be in, because the surgery was as risky.  It was not a matter of “what” but a matter of “when” . If I let it go in hope that i still have 5 years, or that I belong in the 1%, I would most likely end up having emergency surgery by a local neurosurgeon that said "80% death, 95% very severe deficits, nursing home type of deficits..." I knew that if i didn't risk now, later would come soon and that would be my fate. I knew that surgery was the best option.. because it might happen “now”, but my chances with this amazing surgeon were nothing compared to the ones that would be performing the surgery whenever this thing burst.  It was better to become disabled now, than to become a vegetable later…   It was very painful to know that I was willingly going to lay down and wheeled into a surgery that was going to disable me, just so I can live and see my children grow up, but it quickly came the only choice for me... I picture myself in a wheelchair, with a white board to write, and not in a nursing home, not looking or acting like myself, not even knowing who I am.  It was a lot to take in, and my head was spinning, because phone conversation did that. They still do… however, I don't remember what I told Jay later that night, but I am pretty sure I made it sound as positive as I could. I remember not telling Jay all the bad statistics and news. I didn't find it necessary. They were not going to change the outcome. I never told my parents, either.

That said, as painful and difficult that was... I do not feel special to have thrown myself willingly into a future of disabilities.  I simply didn't want to have my husband have to tell his children that their mother was not here anymore. Friends made me understand that my children would much rather visit their mom in a nursing home, than a graveyard.   I do not feel brave, or courageous. I feel like a mother.   At the rehabilitation center, I was always heard laughing. I didn't realise how loud I was until I heard a patient there ask "why is this lady always happy, how can she be so happy in this condition" (I couldn't even get myself in my wheelchair by myself yet)   I told the nurse "Just tell her that i am just... happy! I accepted the worse and was at peace with it, so this is just pure happiness for me, plus my husband is a goof ball"  and its true. I also didn't expect any big milestones. I was going to do this day by day... which is ironic because I did achieve milestones so much quicker than anyone ever thought possible.  I never worried, was not stressed, always laughing to the point my belly hurt. I think some studies have to be made about the healing process... haha naturally think that nothing is wrong with you heals what is actually wrong with you. hahaha

What I do feel now, is guilt. I cant help it... Over and over, and over, I hear  of people that DIDNT know they had this time bomb in their head. If it was not from my physician that sent me for an MRI, I wouldn't know. I would know how i feel, and probably prescribe a bunch of meds, but I wouldn't know why, because MRI are not something doctors send you for easily.  I, too, would of had a massive hemorrhage, have surgery and have this outcome. Knowing about this was a curse at first, but its a blessing  too few with this "tumor" have.   The guilt, is what some called "survivor " guilt... but to me, its more than surviving the surgery. I may of survived the small hemorrhages before my surgery, but its not like I did anything... it could of been massive any of those times.

I am not even sure guilty is the right word... its more like a deep sadness... because I now come across people, children, that didn't know... didn't have "warnings"... BOOM!  Brainstem cavernoma are so rare...and yet some cavernoma in other parts of the brain that can be easily operated on... if they explode and cause a massive hemorrhage, it will do as big of a damage. Sure its small, it will simply be removed, and that does happen to a lot of people... but if you didn't know and it just burst..... SO... I know i am thinking deep here... and i really shouldn't, but when i read stories like this one... I cannot understand why I am where I am.  The irony of it all gets overwhelming to me.  At the same time, on February 18, when I found myself struggling to breathe and swallow and couldn't fell or move my body for 6 hours, I knew what this was, and I had just decided to go get the surgery in Arizona. I was aiming Fall of 2013, after the kids go back to school. I was in the ambulance feeling worse by the minute, really bracing myself to pass out any minute, knowing it was the end whether I die or wake up "gone".  But I didn't. It was a bleed so small the local hospital didn't find it and called it "stress". Spetzler found it when he did what he does best; play in people's brain.  

I soon realized that what I thought was a curse was in fact a blessing… the answer to my prayer, as I have been begging God to give me Peace over the choice I have made to have surgery now. I thought surely, God was not going to allow me to have a massive bleed now before my now scheduled surgery  6 days later.  I was totally convinced of that. God didn't allow all these circumstances to fall into place like this, and cut it short, like some type of bad jokes.  In the ambulance that famous day in February, that is what I kept repeating to myself in order to stay hopeful and positive.  At first, I was sad, very sad and said “Not now, Not now” because I thought for sure I was having a massive brain bleed. I couldn't feel my body or move at all. I really felt like I was going to pass out any minute, and I knew that once I would, I was not going to wake up the same, if i did wake up. I knew that this meant, that even tho I had found a surgeon to do this surgery better than anyone else in the country could, I was destined to have local surgery by the surgeons that condemned me, and have a life of disability. So I prayed… I prayed that God gave me the strength to accept that.  I saw Jay sitting in the trauma room, and he put his head in hand. He is a tough guy. He never showed me that he was scared, or even worried. I know he loves me dearly, but he just doesn't show that kind of emotion. At that moment, I saw how scared he was, and it broke my heart.  I don't know what they put in my IV, but I felt better not long after that.  I felt a very weird sensation in my head, like a very cold droplet of water. Its almost as if I felt it disintegrate. Somehow, I knew I was going to be ok, for now. But I was scared… I had experienced how quick and strong this was, and I knew that it could happen anytime again.  

It didn't.   

It didn't happen. I had surgery, and I am fine.  Why me, and not someone else?  What is permanent and i will have to deal with for the rest of my life… if they fell upon me out of the blue, I probably would of been miserable.. but because they came to replace much worse, I see them as a blessing.  

…. Please pray for that little boy...