Six months into my Traumatic Brain Injury, my friend and healer, Taj, said “you need to give it a year or two.” “Really??”, I couldn't believe it. It would never take me that long. I was going to be better any day now. I was a healer. I understood healing. “A whole year?”, I asked her incredulously. “Or two”, she reiterated, “a TBI takes a while!” So I set my sights on a full recovery beyond the “any day now” mantra I had constantly repeated to myself and believed, to mostly recovered "within one year", and a full recovery in "two years at the very outside". I still believed it wouldn't take me that long. I believed that my sheer optimism alone would get me there. I believe in spontaneous healing. At the time of the accident, I was on my way to becoming a "Heal Your Life" workshop leader for Louise Hay. I was in negotiation to create a series of "Heal Your Life" CDs. Healing was my life's passion.
Last June 29th, I met that two year mark of the sailing accident which caused my TBI. I dreamed of the second anniversary as the time when I could look back and reflect upon all the trauma and challenge that I had survived. Having been to hell and back, and having great words of wisdom and pearls of insight to share. I thought I would be looking back, as if upon an interesting but challenging trip to a foreign land. Like going on a trip to Africa to help villagers and contracting malaria, and be able to say “wow, that was an interesting experience! I am richer for it and I am glad it is over.”
The second anniversary came and went, and unfortunately my symptoms haven’t come and gone so easily. Recovery is painstakingly slow, and a constant test of patience. I am still in the midst of living with a brain injury, unsure I have made much progress. I still struggle to figure out where the floor is and where my body is in relation to it. I still struggle with any movement, including simply moving my eyes, my head or riding in a car. I struggle with coordination, reading, writing, memory, focus, concentration, exhaustion, and overstimulation. To reflect back up on the latest overwhelming difficulty, I only have to go back a few hours, not two years. Even though as a healer, I may have thought I understood healing, I hadn’t accounted for my inability to apply the principles of healing due to the fundamental operating system, the brain, being the part that didn't work.
I had nothing inspiring to say to honor the second anniversary, so I chose to say nothing at all. It’s a choice I make frequently now, as I sit as a silent observer of life going by. As more time goes by, I am more and more separate from the daily rhythms and interactions and thoughts, that used to comprise my life. They have become a distant memory in a now very limited version of that life. Now I look back and know that two years is just the begining of this long road to a new life.
I have always been a positive and optimistic person. I have always taken the great challenges in my life and turn them into opportunities for new possibilities and found beauty in every storm. I thought my two-year anniversary, I would be telling tales of the beauty slowing down, the learning to ask for and accept help, the profound of simply sitting and being, my deeper understanding of healing, and all the wonderful ways that this has made me a better person. My life has always been about contributing to the world, and I knew I would never be given such an ordeal without also giving a gift to elevate those around me.
The truth is, there aren’t a whole lot wonderful things to say about a traumatic brain injury. Finding something wonderful to say, requires such a deep stretch of the imagination, it doesn’t feel authentic (yet). I haven't visited a foreign country and returned to tell the tale. So far, I got stuck there.
TBI is horrifying and tragic experience that has created loss in every part of my life, and in the lives of 1.7 millions of Americans each year. That means 3.4 million unfortunate Americans of all ages and backgrounds who have joined this club just since I have. It truly can happen to anyone. And it is heartbreakingly tragic beyond belief. I met with a young woman yesterday whose symptoms are similar to mine. Sitting with this beautiful, bright, athletic 20 year old, who had her whole life ahead of her, whose capacities are now so limited she cant even watch a movie, even though she looks fine, broke my heart to pieces. A life full of limitless possibilities can become so limited, so quickly.
What I can say reflecting on this second anniversary, is that I have learned to look better. Well enough in fact, for people to never guess there is anything wrong with me. I rarely stutter now, because when I feel like it is just too hard to speak, I don’t, I choose silence. When I can't follow a conversation, I just pretend to get it, because I've learned that if I am doing poorly enough to ask, I probably wont understand the reiteration either. I can walk short distances fairly well because I have learned to always hold onto someone or use trekking poles-- in spite of every rude stranger’s remark about skiing. I am becoming aware enough of my body to remember to put decent clothes on in the morning, and am now able to understand approximately what top goes with what bottom. I have learned to use Dragon Dictation to write this to cover up my clumsy dyslexic typing. I looked well rested, and less stressed than before the accident, because I sleep so much. I don’t fall asleep in the middle of restaurants anymore, because I know not to go to busy restaurants, parties, or other public places. They are simply too overstimulating, and caused me a lack of function that results in embarrassment. Yes, I can say that I have learned to look darn right functional. On the outside, to everyone’s relief, it looks like a complete recovery.
Here is what they can’t see....
-To be continued-
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Saturday, August 18, 2012
Saturday, March 3, 2012
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.
Watch Nathalie's talk here.
Tuesday, January 31, 2012
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!
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!
Saturday, January 28, 2012
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 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.
Thursday, October 13, 2011
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.
Friday, September 30, 2011
Isolated in a Crowd: Month 5
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.
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.
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.
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. "
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.
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.
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