March is National Brain Injury Awareness Month, and I feel it is my duty to raise awareness of this heart breaking tragedy and speak for my brothers and sisters who can't. Speaking is easier for me than writing, so here is my recent 10 minute talk at the Brain Injury Association, on just a few challenges of living with a TBI. Enjoy, and please post your comments. Thanks!

Watch Nathalie's talk here.

Jump in Time

I was originally going to post my story from the beginning to now on this blog.   I wanted to share all those impossible difficult moments of embracing a brain injury, but didnt have the typing skills or ability to figure out a blog at the time.

Now that is all in the past, and I have lost interest in talking about the past. Right now is so rich! So excuse me now, while I jump from then to present time. I may occasionally put in things about the beginning of this journey, but it seems less satisfying than starting from where I am. So here goes, present tense, life with a TBI. This is where I come out of the darkness and into the light!

From Social Butterfly to Social Catepillar

11/20/10 I went out to a show tonight wwith some friends. It reminded me that I am still a newborn baby. THe music was too loud, I was dizzy and loopy and aware of my sypmtoms, feeling seperate from others, no seprate from LIFE. I feel seprate from life. I see others dancing and laughing and I it looks so familitar and so foreighn to me. I cant dance, I cant stand or move my head without feeling dizzy. I feel like I have died. I have died and now I get to watch everyone live. Like an outsider, an observer.
I was pretty jprou d of myself for keeping up with the conversation and finding somethingk to contribute. But I also wasnt sure how I was coming off. I am so scrambled inside and no one realy knows. They thinkg I am like them, with the same abilityes and awareness. I am not. I am scrambeled and trying to maintain concentration and awareness. I have lost my self awareness. I have offended 3 people this week. I’m not fsure if its waht I said or maybe jsut how I siad it. But I am jsut expressing myself and wondering if I am putting my foot in my nouth. I really dont know. I used to be so sentsitive to saying the right nthigns. Now I dont know how I come across to others. Like being drunk, unaware, oblivious, no ablitiy to be sentsitive. 

I wonder if I should just hide. Be quiet. Dissapear for a year. But I dont want to hide. I want to feel connected with pepoel. I watn to find dignity in my disablity. To be a part of life. Will I reagreat this? Will I shoot myself in the foot? Ruin my rellationships? Turn off everyone? I dont know who I am anymore. I dont knwo myself.

Will this go on froever? Will I get my life bakc? Will anone ever find me lovable or attaactive now? How do I forgive myselff? Am I depressed? What is the differnece betweeen depression and grief.? What I label the emotion makes a big difference. We are what we say we are. Depression feels stuck, permatnent and unhealthy. Grief feels temporary, movinbg through, and healthy. I will say "I am grieving", not "I am depressed". I am griefing the losses. Many, many losses. It feels right to be grieving. I died.

The problem with food

11/15/10

This morning I made a cup of coffee and forget to dringk it. It got cold. Put it  in the microwave and forgot it in there. Found it 4 hours later. 

Tonight I cooked dinner. That was a big deal. I Was starving and impatient to eat becaseu I had forgotten to eat all day. I have set my phome to beep at me 3 times a day to eat. I have no sigmal from my body to eat and I can neber remember if I ate or not. After a lot of effort, I. finaly got everything hot at the same time and served it up. The next thing I know I am n the middle of an 40 minute phone call I made to the physical the;reiapist, and my diner plate is in fromt of me, cold. Why did I make an importatnt Phone call while my diner I just spent 30 minutes heating got cold?? I dont umderstand mysleft.

All day its’ like this. I waste so much tie spinneing my weheels/ I cant find anything. I cant remember anything. THe re are notes all over that I hae no idea waht they mean. phone hnumbers, names, thinkgs I meant to do, they make no sense whern I look at them. EVerything is dijointed.

Isolated in a Crowd: Month 5

11/15/10

I feel so alone. Even when I am surrounded by so many loving people, and have so much support, I feel alone. No one understatnds. No one can. I marvel at people wlalking down the street without any anpprecieation for that freedom. I marvel at how thaey are engaged and doing things and active and interacting with each other. My friends are out and about doing intereesting things, developing themselves and making their mark on the world. I sit day after day in the quiet stillness of the house. Like a tree with so many cars zooming past, not noticing. I feel so isolated sometimes.


Peopla around me are haaving conversatons and I can't follow them. I nod politely to hide my embarrassment. I have not understood a word they said, hoping I can escape before they figure this out. My mind cant foucus on it or process it fast enough. I am the most lonely when I am with people. Ironic. It is a constant reminder of the gap between us. And worse yet, the gap between who I was and who I am now.

theere is so much loss. Pushing myself to be someplace i am not leads to frustraution with myself. I cant push this processs. It requires endless amounts of patience. It will come back in due time. In the meantime I feel selpf-centered. How do I love that too??? I’ve got to trust that I am haing to learn this for a reason. I need to learn to put me first. Patience, patience, patience. 


I still need to theal. I still need to nurture myself,love myself, fgive myself sweet soft tnederness. I stroke my arms, hug myself, touch my cheek. It feels so new. What is this thing called body? Like a newborn experiencing it for the first time, I can't undrestand that it is mine. It feels so foreign and divne it makes me cry. 


Wnet to the neightbors house for dinner last lnight.  So sweet of them to have me over.  Yet I feel like the patheritc cripple when I get symapathy. I hate sympather.y.  I feel like I have notheing to contribute. I cant shop or cook or help clean.  I try to be interesteing druing the conversation, bit mostly  my head is spinning and it takes so much concentration. I slip in oand out of beign able to pay attetnion and am so relieved when they converse withour me, so I can just BE.  I seem to be able to coneverse about here and now,tangible stuff. As soon as it gets abstrarct, or academilc I cant follwo. I feel Like a little child. it’s so taxing and I just want to go lie down, remove myself, and sleep endlessly.

Birthing a New Me

10/26/10 
Barometer at 1013, I have a headache.. Nauseaus.  Loopey, out of it. Felt so good yesterday. I thought I was realy better and would neever go back to this plqd3 of complete dystfunctionl. Funny how many times I have fallen for thsat. TTHingking I am all better now. and then the relapcse takes me by sutrprise. It’s a 12 beer jequivilant day.

10/28/10 
I slept last night. God, what a treat! I dreamt that I was pregnant. i had been coping so well aone. but the baby was now growing, I couldfeel limbs under my ribcatege. The time for giving brith was near. I was gatherging my woment friends together to get ready to give birth. In charge, competent and amazed at the fact that I had to do this by myself in my weakend condition and not only that I had to but that I COULD.   
Surounded my loving friends, I am giving birth to a new me. Only I can do it. It is time. 

Conversaton with my Highter Self in my dream:
HS: "You know you still have the ability to manifest and create your life the way you want it you have not losst that ability even though it appears that you have lost most of your abilityes. "
Me: "How do I do that whaen I cant focus my thoughts?"
HS: "Thoughts dont create your life, feelings do. "

Me: Yeah but it takes a breain to focus on shifting to  better feelings. How do I do that when my attetniton span is all of 10 seconds and my focus is so diffuse?
HS: You are going to figure that out.
Me: What do I want to create right now? Start with where I am. Its not about relaitonships or career or some lofty future goal. It’a about be where you are. The only thing that is importatn and that I want right now is to heal my brain.
HS: OK, so feel healed. Start with “i am well”. ‘I am grounded” Iam prefectly baleanced.” Dont just thinkg those thoughts. THat just leads to frutstration when you then stand up and topple over. FEEL THEM!!!! and you’ll call them into reality faster.

Help... I Hope

Friday 10/22/10
I went to my first TBI survirs srupport group today. I expected to find peolpe in wheelcharis, drrooling, and ubable to speak. I expected to be onr of the more functional people there see people worse off thatn me. I went up to the group and at first, didtn thatingk that I had the right group. THey looked like a nice, happy bunch of college kids hanging out. I was surprised by al the big smiles. i asked if I had fgound the right group and they said yes. I waid “but you look so normal and functional!”. They smiled and replied “so do you!” Oh m y God. I never realized how normal I look on the outside. THat is the problem. I have an invisible injury. No one can tell how absolutely scrambled I am on the inside. Azaming! I didmt know.

THe support group was SO heloful. They had figured out all the resources, medical docs, OTs, therapists. I feel like i fimaly found some help. THe doctores i've seem have been useless. I fele like I am finallly gettimg somewhere.

They all had much more sever stories than me. CAr and bike accidents that had them have to lives without parts of their skull intact, finaly to be reaplaced with plastic foreheads or titanic plates. They were so happy and smiliey, it gave me hope. It alos made me feel like a pathertic whiner. Here I am in the midst of so much loss and grief and they are yougn. They have lost their youth, hteir entire lives. At least I had 46 years of normalcy. I ddidnt feel so functional and lucky all those years, but wow, what I didint know or apprecite then.