“Don’t look and it won’t hurt” are the words often spoken before a shot is administered. Sometimes in an attempt to emotionally retreat, I whisper this to myself. This is survival mode. I’m momentarily ignoring the ache TBI has caused.
Brain injury offers an endless arsenal. There is always something new resulting from the fall that occurred six years ago. The injury is often one step ahead.
Years ago, on a particularly cruel TBI day, I stopped my car at a crossroads in the middle of the country. We had been given unbearable news. My heart felt devastated. Exiting the car, I slammed the door, screaming at the sky, “Is that all you’ve got? Because I’ve got more!” At that moment, TBI had become a person with a face all its own. This dark, cruel face was no longer a stranger. It had become part of our family.
In writing this blog, I am aware it will be read in December. For many, this season represents gift giving. I’m offering myself an early gift in sharing this—the gift of admitting how furious I feel about what happened to Taylor and the continued struggles we face.
Taylor is active and working part-time. He is involved in the community and has a small circle of friends. For these things, I am grateful.
However, there is a flip side to our lives and Taylor’s injury that is not freely discussed. There are issues we deal with that must be kept more private. I am not referencing some sinister actions or behavior. I am referring to the harsher side of brain injury, which I am certain many readers relate to. It’s the part of the injury where the Taylor we felt deeply connected to disappears and is replaced by someone entirely unfamiliar to us. It is safe to say that this happens daily. I no longer wonder, “Who is this?” Instead, I become an observer, outside of my body, seeing myself bent over, weeping…missing so much in one single, solitary moment.
Over the past few years, we have witnessed Taylor’s friends as they married and had children. This year was no different. I’ve come to a place of sincere happiness for others, but I have been unable to resolve the ache in myself for what may never be: the daughter-in-law I dreamed of having—the blossoming of Taylor as a father. And most importantly, the realities I previously took for granted—Taylor’s happiness and independence.
Life inside the bubble of brain injury is a roller coaster. In our bubble, the daytime is generally good. Nighttime brings the opposite. Nighttime is when the grip of TBI tightens in our home, announcing, “I am here, and I am strong!” In these hours, I focus on the knowledge that this will pass. And if I can, I slip to a safe place in my mind.
Each evening, Taylor's post-injury thought process evolves into a profound sense of sadness, frustration, and defeat. This transpires to a negative outlook on life and others. It extends itself to various groups, family members, and friends. It is hell to witness. It is as if the deepest moments of rejection, anger, and despair compile in Taylor’s brain and then come roaring out like an angry lion. Interestingly enough, nights have been a challenge since his early recovery.
Taylor recently wrote, "I don't know what to do with my life! Doesn't matter how much I do or how hard I try, it doesn't get me anywhere! So maybe I should just stop!”
In these hours, he cannot see how far he has come. He wants to quit. That exhaustion is something I can relate to.
Moving through life with Taylor, I've noticed many things. He hears many cheers and sometimes jeers. "You are awesome. People look up to you." Then, “Stop doing that. Think it through! You can't have that." Even when coming from a place of love, correction doesn’t feel loving.
As Taylor's mom, I am both his cheerleader and reality-checker. Taylor needs both of these offerings. When I notice the scale tipping hard one way or the other, I try to imagine myself in his shoes and bring some sort of balance.
I can't read Taylor's mind, but I can see his angst...feeling like he is never enough...being reminded of the cant's...and then when expressing these feelings, being reminded to be grateful. I also experience his delight at genuine acceptance and real friendship. This is exhausting to witness. How must it feel to live it? I know the injury has changed Taylor. I also know how hard he tries to become whoever it is the world wants him to be.
A recent theme playing in his mind is the conflict of understanding that his old life will look different than his new life. He remembers who he was, and he misses being that man.
I want people to understand when someone falls down 13 stairs, bashing his beautiful head on almost every one of them… cracking, crushing, damaging...and then doesn't even flutter his eyes for a few weeks, remains in a comatose state for much longer than anticipated, wakes up confused, angry, and weak...it changes him. And even though he might look bright, burly, and strong, fighting back with tremendous force.... there might be a spot that is (for now or for always) impossible to reach. I hate sharing these thoughts, but they are our truth. Parts of Taylor are gone, and to act as if they aren't is cruel.
I will never be okay with what happened that night. I will forever hate brain injury and every single thing it stole from not just Taylor, but our family.
Last night, I closed my eyes and lulled myself to sleep singing the words I used to sing to Taylor in rehab. “I know you are stronger than this. I know you are braver than this. I know your future is brighter than this. Come home, Taylor, come home.”
Six years later, I still miss my son. I know he also misses himself.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Alex P replied on Permalink
Your story breaks my heart but I’m glad your standing by your son. I can give a look into a life with TBI and no one to care. Thank you for sharing your story. It’s important to try your best to understand the problems those of us suffer with from TBI / Post Concussion Syndrome / probable CTE. Life seems out of control. So thank you for being strong and advocating for so many. Here’s my story.
No one has ever really concerned themselves my well being. My parents took off on me when I was 14. I got passed around from home to home in rural Kentucky. I wanted out so bad but I was dirt poor. The only way to college was athletics. With just enough ability I made it and found my first family environment among my teammates at Auburn University. Auburn is known for three things. Football, Engineering and ROTC. I would experience 2 of those 3 things in football and ROTC. I found a family that didn’t cost a man much it was just a matter of giving up all you had. Personal identity meant nothing. You were either a Tiger or you weren’t. I loved it. I thrived in it. I was experiencing a group of men committed to a mission, winning. No faces, no names just a group of guys willing to give everything they had for the next one. Little did I know it would take a massive toll later in life and it has. I was able to sign as unrestricted free agent with the Atlanta Falcons. I bounced around on practice squads but never made a game day roster. Sadly I took an additional amount of physical punishment at an even more violent level than college. The military gave me a waiver as long as I was chasing this dream. So I never got a chance to serve. I had over 15 surgeries in 3 short years and medically didn’t qualify when I was done playing.
After that I used my criminology degree to go to work for a large Bank as a bank fraud investigator. I worked there for about 4 years. I was on a joint bank fraud task force with the Local FBI office. They’re were local law enforcement agencies involved as well.
The local banks funded the task force in a cooperative of exchanging information more efficiently. I got some great training. I was able to attend several FBI seminars on interviewing and interrogation. I learned there how to get information from people using kinesiology. Body language, how to appeal to their conscience and moral standards even though they were part of a criminal investigation. It’s where I learned to meet people from every walk of life on their level. If they were a CEO or a street forgery suspect. It was fascinating. So that’s the back drop of life I’ve come from. It’s been a hell of a ride.
Fast forward to 30 years later and I’m falling apart. Closing in on 40 surgeries. Some experimental like the numerous eye surgeries to save my vision. Some necessary like prostate cancer and cancer on my spine.
What I’m experiencing now is the residuals of all those head impacts. I have lost everything. I have been homeless for the better part of the past three years.
Waking up in my vehicle and getting to work on time is difficult. Finding myself working in a hospital these days as a patient services tech is a twist never expected. I get frustrated when I see people no call, no show for work. I get frustrated when someone asks me to take a shift because they have a headache. I don’t get it and I don’t want too. I can’t understand it. Having and holding down a job for me is a big deal. It seems people take it for granted.
The main light left shining is the chance to care for the people in that hospital. Patients, patient families and employees alike. In a way, I love them, I love them all. I figure if I take my life’s accumulated experience and meet them right where they’re suffering then I can keep them safe. I learned crisis intervention through my years as a foster parent. Taking dozens of kids into shelter under my roof who were just like I was. Understand that stability for a child is feeling safe. I’ve learned quickly that patients are the same way. They want to feel safe. They want to know someone cares and will really protect them. It’s amazing that I get this chance. I get a front row seat watching someone go from fearful to peaceful. I don’t know why I continuously find myself in these situations. I don’t know that I care why. I just care. I want to be thankful for the privilege of interacting with these amazing people. I’ve learned to be careful about taking credit for any of the positive things that happen. There’s a greater power at work here and I just rather not tread on sacred ground.
The irony of it all is that football has made me one of those in crisis at times. The brain injuries change you over time. Medicine doesn’t always help. The syndrome of CTE (chronic traumatic encephalopathy) is code the doctors can’t crack. Undetectable by all of the most technologically advanced medical devices it is a cloud of mystery.
Football players have been the most studied. My sport has the most brains in the brain bank at Boston University and someday I’ll be in there as well known as donor 2403.
My study is called “The Legacy Foundation.” Our legacy is to provide those behind us with relief through medical research on our brains while we’re alive and after we pass. It’s an ominous thing to have hanging over you. Greatest challenge of my life. It is this that grabbed a hold of me Saturday night and wouldn’t let go. Facing the reality of my own mortality. I ended up in the behavioral unit of the hospital where I work. People were stunned when I was admitted.
When I was in college one of my professors encouraged me to journal. It wasn’t something I spoke much about but helped me work through the struggles of loneliness. Holidays were always particularly difficult and still are today. So I’ve always been a reader and a writer. Two characteristics not openly shared in a testosterone filled environment. Nobody wants the title among his group of alpha males as the “reader” or the “writer.” Figured if they found out they’d break my fingers so I couldn’t hold a pen or turn a page but do so in a loving manner. LOL.
Today I’m dreading the holidays once again. I hate them. Forsaken by the world and wanted by no one. The destruction of my family as my wife quit on me after 21 years of marriage. Quickly she found another man. She’s a nurse and never took anytime to learn about CTE or TBI. She called me a liar. 2 of my 3 children hate me. My youngest at 16 has been my only joy.
One failed suicide attempt via carbon monoxide poisoning. 3 trips to mental hospitals and I’m an outcast.
Loneliness so intense that it physically hurts. There are many others like me. Seem as crazy and worthless. I get angry because I have provided shelter for so many others and no one will shelter me. I took my mother in when she had started into the stages of dementia. I took my sister in when she and her husband lost everything financially. I gave her shelter for a year and even a car to get her started again. All this while my wife remained a stay at home mom. I worked myself to the bone. I kept working when she decided she wanted to go back to college and get her nursing degree.
Now, I have nothing. I trust no one. I’m called a liar by those I took care of. I hate this time of year. I hope I can hold it together. It’s getting harder.
Becky replied on Permalink
Thank goodness I found this site. Thank you for your blog that lets me know I'm not alone.
My son was involved in an accident that fractured his skull in 2015. He was married at the time and living far away from home here in Florida. I stayed with him in Iowa until he was out of the hospital and released from care. No one knew at the time he was suffering from TBI.
Fast forward to 2017, when I got another panicked call from my granddaughter that my son had tried to commit suicide. He made his way back to Florida after being released from a facility in Texas. I was...well I can't find an appropriate word for how shocked I was to see how ill he was and that I was totally unaware he had been living this way for two years. I did not know the man that returned to my home. I did not know anything about TBI but, I soon discovered he has major neurocognitive disorder caused by TBI. Pure turmoil followed and has never stopped.
He doesn't have insurance so getting to the doctors isn't possible as I don't have the money to help. I did get him to a GP that prescribed him a psychotropic that has helped some.
The first year here my family thought he was just acting the way he did due to being irresponsible and undisciplined. He's now divorced, his wife and daughter want nothing to do with him. He does get a disability check now though I am his rep payee because he isn't capable of handling funds. Neither my husband nor anyone in my family would allow him to live in their home. I've ruined my credit running up credit cards to meet his needs and provide him a place to live. I bought him a car but he wrecked it because he can't focus enough to drive. I can no longer allow him to drive at all. His current situation is living in an old motor home I bought and parked in my 86 year old parents driveway. He's too much for them at their age but I simply don't know what else to do. He really isn't capable of living around others due to his moods and unpredictable temper.
He wishes nothing more than to die. I wish nothing more than for him to smile again and have a life worth living in his eyes. I cry every day. I'm exhausted from wondering if today will be the day he attempts again. I'm so tired of not knowing how to help him and I live every day knowing that if something should happen to me I don't know what would happen to him.
I'm sorry I didn't mean to write a novel, I've simply got two years of grief, disbelief, frustration, and disappointment that I carry with me 24/7 with no end in sight.
If you lasted through all that, thank you. Even if no one reads this, I feel temporarily better having voiced it.
Nancy replied on Permalink
I think I needed to hear those words. I agree they were spot on. My son was hit by a car and has Trumatic brain injury. Everything change that day. I have often said to myself that I will never be OK with what happened. My sons relationship disintegrated and it was very painful for his partner. I was engaged to a fantastic guy, who I loved so dearly. My sons injury took a toll on my life as well. I find myself morning for my son who is change so much, and for the life I used to have as well. Caregivers and family members definitely need to have tremendous strength to deal with all these challenges. I’m finding that people who are the closest to us tend to go away with time. I’m finding that I need to join brain injury support groups or other networks to find comfort and reassurance. My wish is that every person who Has a brain injury and their families are blessed with peace and comfort this holiday season
Monique replied on Permalink
Thank you for this. I look forward to your blogs, It is comfort to know I’m not alone caregiver to caregiver.
Renee' Brown replied on Permalink
WOW, so spot on. From this caregiver, thank you. Sending prayers and best wishes for the holidays and a happy new year!
Nicole replied on Permalink
Renee, returning the kind wishes back to you and yours. - Nicole
Shane Conner replied on Permalink
Mam, I totally understand what you and your are going through, I have been living with a TBI, now for 18 years. It was very hard for me to readjust myself, my story is long, alls I can say from my experience is that, I had to learn what my triggers were that put me in my moods, way of thinking, and how to handle them. I had to because I went back to work 3 months after my TBI, I had a family to support, wife was pregnant. Plus I also worked in a prison system, in which I found myself sometimes making the situation worse and wanting to fight. My wife was a realist with me, she barely showed any support, empathy, caring towards what I was going through, this hurt me and still does today. Music that I relate too helps me a little, quit dark room to refelct my day and sometimes cry. Being positive, and supportive will have an effect later. Very Brain injury is different, and with me after 18 years, I have noticed I am degrading, such as no social interactions, communication issues, and so forth
Nicole replied on Permalink
Thank you for sharing with some of your story with us. It sounds like you have been down a long road. Sending you wishes for good things ahead. Keep pressing on. - Nicole
DcC replied on Permalink
Thank you for sharing! It takes courage to let people in to the every day challenges and struggles TBI survivor/thrivers experience/feel. I am a TBI Thriver but still struggle with the thoughts... the never ending invading thoughts of the before, the now and the future??? So much to work through during the Holidays too... too many expecatations from myself and others, too much stimulous... Fortunately, for me and my two, now young adult children, a life changing event put the “important” things into perspective and priority. We are three, loving, forgiving, thriving and forging ahead despite our past and our daily challenges. It is not easy! I question myself often and am fearful of making mistakes from the many important adult decisions I need to make. It is certainly fatiguing on many levels. But, here we are, celebrating life during our 11th Christmas season. That first Christmas forever changing all the Christmas’s that follow... realizing that we are first and foremost family, supportive and perservering into the destiny we have been created for. I wish you and your family the best Christmas and much healing on every level. I pray Tyler will continue to heal each year more and more until he is satisfied and living the life he was created for. Blessings!
Nicole replied on Permalink
I just recently came across this idea, survivor, and thriver. I LOVE it. Your message was honest and lovely. Wishing you the very best. - Nicole