Dear family members and friends of brain injury survivors.
I write this letter to you as a survivor who has experienced the raw pain of watching several of my own family members walk away and my supporters who cared for me began to shrink. A year before, after my open heart surgery my support system was huge. Through daily phone calls, meals made for my husband and I and friends stopping by to check on me regularly, You can understand why after three months of intense therapy after brain surgery, I thought this time would the same. Not so much.
One of the classic problems we as survivors of a serious brain injury is the people who take care of and the people who said they would always be there for us, begins to be a shrinking support system. You see, once the immediate crisis is over, our family and friends begin to slowly disapear.
What reasons have kept you as the extended family from helping and supporting? Maybe you live far away? My own family lives about 8 hours away. Maybe you can't miss work, or possibly you just don't connect with your survivor.. his/hers impairments and deficits discomfort you?
When the brain injury survivor is high functioning like myself, you and thousands of family and friend members decide that their must be no need to help out. Maybe a quick trip home to see them, maybe for a day or two and you think to yourself "Shes out of treatment, He walks, she talks and he looks " "normal." So why would you need help? He Can't drive"? " He's just not applying himself. Or "She can drive a car, why would you need our help?" Hes just looking for attention." you think because your survivors scars, pain and confusion is invisible why should we help you care for her?
Your line of thinking leads to to "why do we need to educate ourselves, she is fine." "Your pampering her." "She's lazy and irresponsible." Your line of thinking leaves us without decent medical care our battered and damaged brains desperately need. Your way of thinking leaves us feeling as if we have to say we are ok when we are anything but. It leaves us divorced, abandoned, isolated and I'm believable.
Before just giving up on us family, caregivers and survivors should try to educate their relatives about brain injury and your survivors specific impairment as no one brain injury is the same.
To observers our brain injury is invisible, you fail to see the full spectrum of physical, cognitive, emotional, emotional, behavioral, social and or communication symptoms we and our caregivers deal with everyday. You only see what you want to see. If our broken bleeding brains were visible would you believe then?
We wish for that. Dream for a day you could should see our confusion, mind blowing headaches, fatigue, lonliness were all open sores and wounds that you could see.
My husband is my caregiver and it's very likely that only our caregivers recognize that their loved ones work so diligently to appear as normal as we possibly can.
Only our caregivers see us at our very worst. At our most vulnerable. If only you could understand how much time and energy our caregivers spend helping their survivor who lives with a brain injury.
Nobody sees how much I rely on my husband and daughter's, nobody sees the sacrifices he has made for me to help me have as much joy in my life as possible.
In conclusion I ask of you to Open your eyes. Unturn your backs. Open up those closed minds. Your survivor has experienced a trauma that you can't just put a bandaid on. Take those blinders off and Unthaw your frozen hearts. Your survivor needs you. Their caregivers need help and support. Thank you for reading.