The Centers for Disease Control (CDC) defines a traumatic brain injury (TBI) as a disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head, or penetrating head injury. According to the CDC, an estimated 2.8 million people sustain a traumatic brain injury annually. 52,000 die, 282,000 are hospitalized and 2.5 million are treated and released from an emergency department. Falls were the leading cause of TBI and accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States.
Recently, an elderly family member fell and she ended up with some broken bones and a concussion. Her injuries required immediate emergency medical treatment followed by inpatient stays in a rehabilitation hospital and a nursing home. She then had to live with relatives and do outpatient therapies before she could go home.
As she transitioned through the rehabilitation process, her visible wounds were given the most attention. Physical Therapists had her doing exercises, walking hallways with a walker and walking up and down stairs. Occupational Therapists were teaching her how to do daily living activities such as dress herself with one hand, self-care, and cooking.
As the weeks passed by and the scar above her eye healed, everyone commented on how she looked like her old self again. However, some people took offense to some of the things she said to them and they started guessing why she was doing things that seemed way out of character for her?
I was very familiar with why that was happening!
I explained to my relatives, as time goes by and the physical wounds heal and scars fade, many Traumatic Brain Injury Survivors start showing more of the telltale signs of the invisible injury: fatigue, anxiety, depression, memory problems, delays in processing information, mood swings, impulsivity, sleeping too much or not getting enough sleep, etc. The injury makes you do things you wouldn’t normally do and say things you wouldn’t normally say.
I saw an elderly woman, who before her fall could run cognitive circles around the smartest of people, now having difficulty remembering things and following simple instructions, impulsive, depressed, and downplaying her own injuries to medical staff in order to just go home.
Watching her struggle physically and cognitively everyday made me think about my traumatic brain injuries, the lack of rehabilitation I had for those injuries and the long term consequences I have to live with for the rest of my life.
Like my relative, I just wanted to go home and start living my life again as if nothing had happened. My family members, friends, co-workers and others noticed I wasn’t the same person I once was and they were puzzled by the way I was acting. My attitude was such that I didn’t care what they thought about me and that I was going to make a full recovery on my own. I persevered so much to be the “old me” that I lost 13 jobs in four years, ruined relationships and went into debt.
I was chasing the ghost of my former self that, no matter how hard I tried, I could never catch.
When a relative is injured and they need to go through the inpatient and outpatient rehabilitation process, family members have to decide who’s going to be their Caregiver(s) throughout the process. They often decide by who lives with the person, who wants to volunteer, who lives closest to the rehab facility, who can take the most time out of work, etc.
Since I don’t work a traditional full-time job, my family members decided they wanted me to be there for her rehabilitation sessions, sit in on meetings with doctors and social workers, go shopping to buy her clothing and other items for her inpatient stays, drive her to outpatient appointments and a lot more.
As if I sit around all day doing nothing, a family member flat out said to me, “You’re home all day! You’ve got time to do this stuff!”
Being a TBI Survivor, my days must be structured so that I can take care of myself and my immediate family members without getting overloaded. I have a daily, weekly and monthly schedule of things I normally do which keep me very busy. These schedules have naps built into them for when my neuro-fatigue strikes every afternoon from 1:00 to 4:00 p.m. The older I get, the longer it takes for me to recharge my batteries.
Of course, I was going to help my relative because I love her dearly, but I didn’t think I would be cast in a major Caregiver role. I was vocal with my concerns and told my relatives I would shift around my schedule to make time to help out as much as I could in a supporting role. When that wasn’t enough for them, I added as many tasks as I could while being mindful not to overload myself.
As time went on, they continued to ask me to do more, which made it obviously clear to me they hadn’t considered or factored into their equation that I had a brain injury. Utilizing the brain injury strategies I had learned from my awesome team of therapists, I held firm and said, “No!”
I was very upset because not only was my elderly relative’s Traumatic Brain Injury invisible to them, but mine still was as well!
I’ve heard many Brain Injury Survivors say how upset they get at their family, friends, co-workers, neighbors, and others because they don’t understand (or care to understand) why they act the way they do and what they go through on a daily basis living with this invisible injury. How hard they work to function as they once did on a battery that only lasts a few hours per day and needs constant recharging.
I often say people would understand more and never forget that I have a Traumatic Brain Injury if the piece of metal that hit me was still sticking out of my forehead or if my left eye was still going up and to the left (which freaked people out a lot!) if I didn’t have the eye muscle surgery to center it.
Wondering what other TBI Survivors and Caregivers thought about all of this, I posted this question on Facebook:
What is harder for you to deal with, having an invisible injury that prevents you from being who you once were and doing the things you once were able to do OR dealing with people who don’t believe or understand you have an invisible injury?
I received answers from several TBI Survivors and Caregivers from across the country who explained their and their loved one’s daily struggles living with this invisible injury.
• Pamela, a TBI Survivor from Massachusetts replied, “People! People! People! People! People! Not exactly that they think I’m faking it, but they think I can help them when I’m the one who so desperately needs their help!
Pamela, can you ______?
Pamela, you have to do this for me!
Pamela, where is the ______?
Pamela, bring me to the store!
Pamela, did you pay the electric bill?
It’s awful! I wish I was stupid instead of brain injured!”
• Kimberly, a TBI Survivor from California replied, “Living with the permanent invisible injury that prevents me from doing certain things. I don’t really care if “people” don’t understand or think I am faking it.”
• Laura, a Caregiver from New Hampshire replied, “I’m living with a TBI survivor and I support him 100%. My husband, having to give up his job broke my heart because it broke his heart. Seeing the pain my husband goes through day in and day out rips my heart out. Some people really suck because they don’t live with it and don’t understand it. He’s not faking this! It’s real! Prayers to all of you who have to live with this pain. Stay strong!”
• Bobby, a Caregiver from California replied, “The judgment of others that have no clue what an individual is going through due to their brain injury I think would be harder. It’s easy to understand and have compassion for the limitations of a Veteran in a wheelchair that lost their limbs from a roadside bomb in Iraq, but not have understanding for another Veteran that may have suffered a brain injury from the same explosion that took his fellow soldier’s legs and damaged his brain. You can’t see a brain injury, but you can see missing legs.”
For more information about Traumatic Brain Injury and to find Brain Injury Survivor and Caregiver Support Groups in your area, contact your local Brain Injury Association.
Read the first installment of:
In The Dark, and
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