On the inside Looking out, disconnect after brain injury:My beautifully broken brain
I always begin my story with "I went to sleep as LeaAnn and woke up a total stranger."
On September 2014 Labor day I suffered a bleeding stroke and brain anyurism followed by brain surgery to relieve the pressure to my brain. After some routine dental surgery, I caught a blood infection in my mechanical heart valves. The doctors told my family that if I survived I would never be the same. After 3 months of learning everything all over again, how to walk, talk, chew, swallow, read and write, kidney failure due to antibiotics I was on for the blood infection, the doctors were right about I thing. I will never be the same.
What is it like living with a brain injury? The best way I can explain is that we feel so disconnected from the world, from life.
On my first night home, and many nights since then, I woke up in the middle of the night, and knowing that a night light was going to be necessary, I had no idea who I was or where I was.
Even though my doberma was curled up next to me, and I could faintly hear my husband's TV out in the lining room where he must have fallen asleep, I thought I was by myself. I opened my eyes but they couldn't adjust to the darkness. I was terrified that I had fallen into a deep black hole, or that I had gone blind.
In the darkness I was unable to make out things that were around me, the only thing I was Sure about was that I was in my bed. I sort of felt like I was coming out of coma. So I got out of bed and stood up. I count remember where my bathroom was, so in the darkness, I headed in the direction of where I thought I remembered the bathroom to be.
Somewhere in my confusion and disconnect I had gotten myself turned around I ended up trying walk through my mirror instead of around it. I was lost in my own bedroom. My poor family were and often still are, ripped from their deep slumber by my screams of panic.
This disconnect reminds me that I am now different from my family, friends and people that I know, and that this feeling of being slightly off affects how I am and how I feel.
Last summer my daughter's and best friend took a little road trip to Spokane Washington State where my brothers live. Standing outside with my brother, my daughter's, my brother wife and my niece and nephew, their voices and laughter filling the night air, I felt as if I was on the inside of window looking out at them. Disconnected. Like I didn't belong.
There are many brain injury survivors who don't feel comfortable in their own skin, anyone who have been through a traumatic event, accidents or fought in a war or have emotional experiences overcome them, and who feel a similar disconnect as I did standing with my family and and friend, feeling completely disconnected from them. So, the question is, how exactly do we adapt to our new circumstances, our new normals so we can move on and live fulfilling lives.
Since my stroke lying awake at night worrying about my future, tossing and turning, and then tossing some more Has made it difficult to get my much needed rest.
For myself that has been one of my biggest questions since my brain injury. Although I have made some progress there is still something making me feel like I am on the inside, looking out a plexi glass window with cheesecloth over it.
Somehow, some way we have to figure out how to make it work for us instead of against us.
How many of you walk through life doing one disconnected thing at a time, feeling lost and alone, but wanting to be connected? we really want to go with the flow and be a part of what makes sense.
RecentlyI have discovered new things about myself like, blue is no longer my favorite color and stunning purple has moved in and taken blues place. I have discovered that I absolutely love dragonflies and butterflies, when before it was dolpins and killer whales, and that my favorite flower is now sunflowers when before my stroke, sweet Williams were my favorites. These discoveries make me feel disconnected from myself, who the heck is this purple loving stanger who is wearing my face?!
I'm not sure since my brain injury that I will ever feel like I am a part of things. I do know I would like to be, but it seems as if there is always something that leaves me feeling disconnected. If only I could feel like I had a purpose in life, my purpose now is to not feel so disconnected.
I love the fluidity of water and I can understand water going down a waterfall as it flows downstream, or one thing leading to another, but I can't understand things that constantly stops, or has no rhyme or reason for its existence in my life now, I strive to put myself in situations where everything that flows and follows one another and it all makes sense.
What if brain injury survivors could just find a way to feel like we are part of the world I think life would be so much better, but it's complicated. What comes first, feeling connected or being a part of the world?
Thank you for reading.