The Masks

Name: Joy

City: Winooski, VT

Brain Injury: Multiple severe concussions – Sports/accidents

Explanation of Mask:  My mask is about showing the layers of my TBI. It is important to me to keep my unique aspects that me, me.  The purple, pink & blue yarn represents my hair the is the same color, The red streaks around my forehead are the constant migraine and other pain and pressure in my head.  The tack is the ice picking pain that happens.  The metal going in and out of m hear is my “short circuiting “ when I get stuck.  The dark gray over my eyes represents my light sensitivity, while the other gray is depression. My perfectly red lips reflects my motto when I’m feeling down; a fun and whimsical quote from Coco Chanel: “If your sad, ad more lipstick and attack”

Name:Amber 

City: Grand Isle, VT

Brain Injury: Brain Tumor attached to nerve in brain.  (Living with it)

Explanation of Mask: Pain, with migraines, numbness in skull, head and face, slow of thought and speech.  Show with memory sporadically, non-consistent.  Fragments of my former self, feeling loss of wholeness.  Overall the tumor is an inconvenience to me.  I keep going, I pace myself. I do not over do it.  That is key.

Name: Deb

City: Underhill

Brain Injury: mTBI June 2012.  Turning left into my work parking lot, I was rear-ended by a distracted 17 yr. old driver.  My first recall… I heard someone screaming!!  I responded to assist.  The screaming stopped… I looked around… how did I get up here on the other side of the road?  What happened?  I looked in the rear-view mirror, huh?  A lot of people down there?  Felt like a long time before someone came up here!!  Then the Emergency room, morphine injection for pain, x-rays/back, cat scan/head.  Fine, is your ride here yet?  Home alone, confused, scared, pain, my kids called to check on me, don’t worry I said, I’ll be fine!  Little did I know what was ahead for these next 4 years of my life.

Explanation of Mask:  “It’s All in Your Head”  You look fine!  I was given the go ahead to go back to work 1 week following my accident which was great with me!  After all I had TBI clients that needed Case Management, new staff to be trained to be TBI Life Skills Aides, families who counted on me.  I loved my work!  For the next 3 months no one at work saw me for any length of time to know anything was wrong, they only saw the signs of pain.  I laughed it off when I needed help to use the Xerox machine, and again when I could not collate material.  I went from appointment to appointment and rescheduled folks to fit in the Chiropractor and Physical Therapist.  I was able to brush off the signs and mistakes being made because I did not even know what was wrong!  I thought my issues; light sensitivity, trouble reading my computer screen, forgetting things, not writing a team meeting agenda, impatience, was due to the neck and head pain and sleep deprivation.  “Depression” set in with Denial and Embarrassment.  After all… I of all people could not have this happen!  Not me!?  Ironic?  “Overwhelming- not just for you, but also for your family and friends.”  Just remember they hurt when you hurt, they hurt worse when you don’t let them in!  Workers’ Comp was not yet on-board.  Kim, my OT said that I should no longer drive and needed to go to Driver Rehab.  OMG!  She also said that I must have assistance for Activities of Daily Living.  NO WAY!  I was truly blessed that my sister had just retired, she drove 85mi. round trip 5 days a week and she never once complained.  Then came Speech, Vision Therapy, and “The Black Netting” is my curtains drawn, sensitivity to light was worse with the extreme head pain.  Right side of my head from base of my skull felt like steel rod shooting lightening bolt pain up my head.  Right eye always blood shot.  “Suffering in Silence.”  “Person Under Netting” was me holding onto my head gently rocking, crying, and praying.  “Talk about a roller-coaster ride of emotions.”  Sensory overload, change is most difficult.  I need a scheduled routine, sorry, I work at a much slower speed now.  Multi-task?  Let me finish this thought first!  Aggravation, frustration from loosing things; like time, short-term memory, insight, decision making, tracking conversations, and loosing material things like bills & paperwork.  NOW THE POSITIVE SIDE OF LIFE!!!!!  See the Yellow light bulb?  Good, I’m glad you spotted it so quickly!!!  It took me a long time to see that light!!!  I made it through though, that was a difficult stage of recovery for me; the sign of acceptance, knowing that I am still left with residual deficits “Is not an end but only a beginning.”  Time to rebuild a new life for myself, tie to love again.  That just happened!!!  God blessed me with a wonderful man, and I married him!!!  “I want to build connections, spread awareness, help others, and fight this!!!”

Name: Alicia

City: Cambridge

Brain Injury: Two motor vehicle accidents with side airbag impact to each side of my head leading to concussions

Explanation of Mask: My right side is the mask I put on for the world to appear normal.  My left side represents the roller-coaster of emotions and feelings I had on a daily basis.  I no longer felt like myself, leading me to ask often, “Who am I now?”  I did not explain what was going on in my head.  My mouth felt taped shut.  My eyes could not see straight, were painful and glazed over, like I would never see out, or in, clearly again.

Name: Anna

City: Shelburne

Brain Injury: Dirt road in Hinesburge, VT I got in a bicycle accident with my helmet on.  I broke my jaw and smashed my eye and tore a blood vessel resulting in a cerebral hemorrhage on July 28, 2005

Explanation of Mask: I want to give two sides to my accident.  Grief and sadness on one side of the coin and freedom and brightness  on the other side.  Always go on feeling these two sides- maybe you feeling happy and then as time goes on maybe you feeling sad.  They are part of the same coin.  In Joanna Macy’s book Coming Back to Life, she has a quote, “How shall I begin my song in the blue night that is settling?  In the great night my heart will go out, toward me the darkness comes rattling.  In the great night, my heart will go out.”  We are all connected- That’s what my mask represents.

Name: Chris

City: Springfield

Brain Injury: Left large occipital hemorrhage that left him with right sided hemiparesis and global expressive/receptive aphasia 

Explanation of Mask: Black represents “bad things” “stroke” “neighbor” “stress.”  “Color chakras”  “good things”  “Do something… what now…”  He expressed the good and bad related to his ABI.  The rainbow of colors represent life and living fully for Chris.  All the things in quote as difficult as it was for him to get these words out, even 17 years later, he said all with a smile.  “Live, live, live!”

Name: Dave

City: Lincoln

Brain Injury: I received a TBI from a blow to the top of my head on a work site in February, 2014.  My symptoms are chronic headache, sensitivity to lights, sounds, crowds and too many things for my brain to process at one time.  I am fatigues and have recall problems.

Explanation of Mask: I feel like I have been worked into check-mate in a game of chess.  Even the smallest of things {pawns} can hold me prisoner.  The board warps and blends because I don’t see the way back.

The tears are from the list I was given, with two additions: ‘no words’ and **##!!}{-*%!.  There are still nights when the stars arc by and I just breathe.

The Tongue and the Eyes.  A little bit of whimsy here.  I take four prescription meds and have botox injections to manage the symptoms.  I wanted to use mirrors for eyes, but made do {I do a lot of making do, it seems} with aluminum foil.  I think people only see what they want to see.

Name: Dylan

City: Undisclosed

Brain Injury: Brain injury survivor of 8 years

Explanation of Mask: I get strength and peace from the support of my family and friends.

Name: Marie

City: Hinesburg

Brain Injury: Acquired brain injury from a large, benign meningioma tumor

Explanation of Mask: My Twilight Zone Adventure has been a frightening yet fascinating journey.  Struggling for months to hold on to my life, I was a lost and confused shadow of myself.  I wondered, “Could this be dementia?”  Finally an MRI revealed a very large tumor holding my brain hostage.  12/22/14 was my day to be brave- the Grinch, as I called it, was removed and I was alive!

Nearly 2 years post op: I am much less self-absorbed, every day I challenge my brain to heal and I’m humbled to see continued improvement.  Here are some observations and thoughts that I’d like to share:

-The “I

-Our healing brains need: physical exercise and rest – healthy food, but less of it- to be challenged, to care and to embrace mindfulness. 

-I’ve met many brain injury survivors of all ages with many different stories.  They are incredibly brave and courageous EVERY DAY.  They inspire me!

-My PT, OT, SLP Angels’ words: “Be safe, be strong, be well. Live your life.”

-I think:  It’s better to be overwhelmed, than underwhelmed.

Now, when I notice the constant ringing in my ears, get frustrated by my limits, or melt down from “too much commotion” – I’m reminded of how lucky I am.

#Humbled #Determined #Inspired #Thankful #Hopeful #ONWARD! #IamHEALING

Name: Mike

City: Chester

Brain Injury: Suffered a TBI in a snowboarding competition

Explanation of Mask: Gene Simmons as one of the scariest faces in the world.  I feel this is a good representation of my traumatic brain injury because it has been a scary journey.

Name: Willow

City: Plymouth

Brain Injury: Car accident: age 4, coma + head + neck trauma, Lupus with cerebral involvment: age 30-42, stroke: age 40

Explanation of Mask: Odin, a Norse god, had two companions- a pair of ravens named Hugin and Munin.  Hugin means thought and Munin means memory/mind.  Every day the two ravens would fly away and come back with information for Odin.  In a poem from that time, Odin states his FEAR that the birds (his mind, thought, memory) will not return.  I have lived with that fear and am so grateful to be back again.

The colors I used are grateful colors- calm + peaceful, but the edges are jagged.  Sometimes I have to work hard to be calm.  

The feathers are just for fun.  A gift from this whole experience is to re-prioritize what is important to me.  Art and the ability to be creative and playful are a joy for me to share with others.