Dear Traumatic Brain Injury...

Dear Traumatic Brain Injury...

Dear Traumatic Brain Injury,

You came into our home almost three years ago and decided to enter with no invitation, no introduction, and no preparation for your never-ending presence. I have since learned that this is how you operate; you just show up in some series of unexpected events. There is no protocol for when you arrive. One moment we don’t have any clue of your existence and the next you are all we know, and it feels as if knowing you has been eternal.

Thanksgiving Eve of 2012, we did not know your name, and we were not well acquainted enough to recognize your face.  You waltzed in silently and escorted my bright, strong, beautiful, full of life, 21-year-old son down a flight of stairs in his home, where he was supposed to be safe. You all but destroyed him.

A fall down thirteen stairs in close to thirteen seconds would forever alter the person we knew and loved, the person we ultimately needed. Our introductions to you were made with words like devastating, coma, brain bleeds, fractures, skull plates, swelling and the most horrific words of them all, “He may not survive.”

In that first night, within those initial moments, you stole many of our hopes, dreams, and chances at the things we used to take for granted. In place of them you gave challenges, frustrations, and endless new maps to navigate.

You would also bring out something else in us: unyielding fight, determination, and hope.

I still remember the first time I saw Taylor’s eyes after you entered his brain. Your cracks, unimaginable bumps, breaks and bruises had an effect on him that caught me unprepared. I searched for my son, but instead found a person who was void of Taylor’s light, his spark, and the love that connected us. Where was our Taylor and would he ever return? I knew none of this was going to be easy, and yet I was thankfully unaware of just how grueling it would become.

Together, our family would spend months in the ICU, inpatient rehab, and endless days of physical, cognitive, occupational and speech therapies. In the beginning, all of the therapies were sponsored by specialists, but as time moved on, and insurance approval grew slim, creativity was forced in charting the continued course.  All the while, missing my son, I tried to explain to people that even though Taylor was here, so was something else that had taken so much of him, and that would be you, Traumatic Brain Injury.

I have hated you since the day we met. You have made me sadder than I ever imagined. You have made me weaker and more exhausted than I ever conceived. You have made me angry and bitter, and you have taken not only bits and pieces of the son I love so very much but huge parts of my own heart as well. In reality, you have taken something from every single person in our family. You have changed the course of our lives, and we are still adjusting.

After nearly three years, I still find myself trying to make peace with you. I have screamed at you, and at times you produced an endless flow of tears that left my face raw with irritation from how many have fallen. You have brought me to my knees, and yet made me stand taller than I ever thought I could. I have felt your defeat and agony, and I have felt the victories that come from witnessing the powerful implications of a recovery that takes place one moment at a time.

I have grown as a mother, as an advocate, and as a person. I have learned how to work with what I cannot change or fix. I have learned that letting go of some expectations of our survivor and ourselves is not only crucial but also necessary. I have learned that I really don’t have to be afraid of you, traumatic brain injury, because at the end of each day, you may have taken us for another wild ride, but we have been victorious.  

How do I accept your unwanted and unwelcome presence? I try to work with you, and not against you. I remain certain that you are not stronger than the force of love, family, and friends that encircle us. I try my best to work within the parameters that you have set while knowing that there is a fierce fire within us that is greater than the devastation you brought.

Dear traumatic brain injury, you have made my sons, my husband and myself, warriors, and I believe that in the end, we will be better human beings because you are here.

Comments (45)

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You write so well about this journey of ours . Thankyou, so very similarly to my sons story ❤️

Your story brought tears to my eyes, mostly because it has so many similarities to mine. My son suffered a TBI on Jan 2016, he was 24. He was in a coma for 3 months and the Dr's said, if he recovered he'd be in a vegetative state. Miraculously my son is not in a vegetative state. He cannot walk but his brain has recovered, no where near to what it was but he is no vegetable. He is not the same, but I am looking forward to many more miracles. Keeping the faith!!

I was also the victim of that devil. Each case is different, so do not give up it takes time. I had a bruise on my brain left after surgery for a total of five years. Everything looked fine on the outside, but Trust Me, Jesus, it affected me and everyone I came in contact with for many years in one way or another. It's been ten years now, it made me wiser to all of those around me and allowed me to show tremendous compassion for others I do not even know, because I have no idea what they are experiencing in life. Have Faith and Patience, it takes Both to make the time pass just a little faster.

Thanks for your insight, David. ~ Nicole

I know its Now November Nichole, but You are Delightfully Welcome, i Hope and Pray that the Journey with Your Son has taken You All on a better road as of now. Don't Give Up, Not that there is Any Doubt that You Would, as You Wouldn't have had the Insight to Share Your Initial Story.

Exactly how I feel.
This is so perfectly written.

Your words are a gift to me this day marking the third year of our family's intro. TBI land. Thank you thank you. Onward and upward!

I understand what you are going through, though my daughter was not as severely injured as your son she does have post concussion syndrome TBI. It has taken away her college degree and her hopes for her future at 25 years of age ( now 30 years old) We continue to struggle to get her the therapies needed. Thank you for sharing this as we, also, approach life day by day,
Yup 11/5/10. Left my beautiful smart boy nonverbal in a WC completely disabled and now a citizen who no one cares about except your immediate family. Family who've given up their job to care for you & fight for your appts and supplies, the never ending on hold calls by people who really could care less whether you get an appt or what you need. A state that has cut your paid nursing reimbursement by 1/2 just because you turned 21. It's full of indignities and loss of life.
Eloquently stated--you captured my family's situation perfectly. TBI takes so much, but it can be a character-builder. I'm sorry you've had to learn to be a warrior as well.
God allowed me to survive you to show His glory. Through my recovery, I discovered that I need Him every moment of every day, even to sleep. You made it possible for me to understand that He works all things together for good for those that love the Lord, and are called according to His purpose.(Rom.8:28)
I can relate so much to your article. My sons injury was from a car accident and like your son his injuries were mostly to his head. So very hard to deal with. thinking of you and your family. God Bless.
Thank you for your beautiful story. I am a caregiver for my husband who suffered TBI, is doing well and on his way to recovery. Being witness to the change in the person you love has strengthened me and hopefully made me a better person, more loving, more patient. I do have my "not so patient days" but I work real hard to keep those at a minimum. Blessings to you always!
Exactly. Affects everyone, every day.
Thank you for sharing your story!! Our son Sean has been living with a TBI since 2003, and your story brings me back to what our family has gone through the past 13 years!!
So true as only someone with a Tbi knows. Thank you for posting this
Thank you so much for your submission it brought me to tears.. I live with a traumatic brain injury from a motorcycle accident in 2011 and let me tell you you took so many words out of my mouth...but yet show the fight that we all have to learn that is deep down inside and instilled in us by the people we love most. There's still no sense to it but no matter what we retain our fight and our presence in society and within. Stay strong!
I understand, tbi came to my husband in 2005 after a never leaves....this is a story worth reading!
Prayers for your son and family!!! I know exactly what you're going thru, I was in an accident 3 years ago and sustained a severe brain injury, I was never supposed to be any thing more than an infant if I were to come home. But I promise, with time and healing things will get better. Just give it to God and ask for his help and he'll be there to guide you and your family .
My daughter's and my traumatic brain injury also happened on Thanksgiving Eve 2012. I am not ready to put it into words quite yet but your description is deeply understood. Thank you.
It has been 4 years since my daughter's massive hemorrhage. Nothing has ever been the same. I appreciate knowing we are not alone in this struggle. My heart is with your family too.
Your words echo so much of our family's reality as well. It is 5 years since our son's TBI, which occurred when he was 19. The unique challenge of young adults just starting their lives has provided a source of determination and strength from him and a fierceness from our family as support, as well as a reality of challenge and moments of despair.
Thank you for sharing, a TBI walked into our lives a year and a half ago through my then 15 year old son. Life hasn't been the same since, its a daily struggle that only those that have experienced it will understand. My prayers to your family!
My son also had a TBI from being hit by a car at the age of 32. We went through all of the above - coma, months in neuro ICU, dialysis. His body was shutting down and he wasn't supposed to survive. Yet he did. For three years our family had suffered watching him make foolish, reckless choices because of his brain injury, and finally he made the worst choice and took his own life. As painful as life is without my son, I realize that I really lost him the night that car came out of nowhere.
My traumatic brain injury was 8 years ago, right out of high school. It is very good to see a family that try's to work and adjust to the new part of there family.

Beautiful, simply beautiful words! My brain injury was almost 11 years ago. I was 25, a college graduate and newlywed. Instead of starting a career I started life all over again learning to walk, talk, read, read and write. I had my degree in Education and was "supposed" to be teaching these things to others! I write a blog about my experiences to help with the language deficits I struggle with! ! Thank you for sharing your story, I can't wait to read your book!

-Lisa W

Thank you for sharing such beautiful and heartfelt words about your son! My son was injured in a car accident last Easter. TBI entered our home as well along with paralysis. I look forward to reading your book! Prayers for you all!
God has taken his TBI and turned it into a gift for your whole family. God knew I couldn't handle my life so He let me endure a stroke instead. It was my greatest blessing
I've walked in shoes like yours for 27 years since my then 21 year old son's TBI. At times I think I was born only to be an advocate for those with TBI, and continue to be stretched to the limits when I encounter disrespect from some of those who can't do what I do, but want me to climb their ladders their way. I'd love to meet you.

I was severely concussed almost four years ago by getting hit in the left forehead by a line drive while playing ball. I was paralyzed for three months. I have suffered 3-4 more concussions since then because of my post concussion syndrome symptoms. I can no longer do day to day activities and docs believe I have developed CTE. Mood swings are horrible and a lot of the time I do not want to live anymore. Help is hard to get. I hope everyone else who may suffer a TBI will get the help they need

That's just straight up beautiful!
So hard to read. My fall almost 25 years ago has made me sad, glad and stronger. Beautiful story .
Every word you have written mirrors our life exactly. As I sit here in tears I thank you for bringing to words, my life the past 10 months. My 27 year old son had a ruptured AVM in the right temporal lobe in March 2015. Our lives have been a roller coaster ride since then. Thank you for sharing your experience.

I have had a difficult time focusing on reading since my brain surgeries (Two in 2007, One in 2014) to solve my epilepsy caused by my TBI on April 16, 1996. Well, I have trouble with memory and focus on just about everything, but reading is especially difficult. I skimmed this article and took away enough to know this strikes the heartbeat of TBI. This year is the 20th Anniversary of my TBI. My #SurvivalDay20, as it were. I owe my mother SO MUCH! If it was not for her insistence I go to a rehabilitation facility, I would never have progressed to this level! I obtained a paralegal certificate and learned German post-injury, pre-surgery.

Sounds AB-FAB !!!!!!! =D

I completely broke down reading a care giver I'm sooooo tired and seems like I'm fighting a losing battle..we are in about 20 18 suffered a TBI from an Atv accident....things were going fairly well til about 6 weeks ago when he started a muscle relaxer..basically lost his mind and became violent.....I'm now a prisoner in my own home and wonder if this is the day he might actually kill me..this has been by far the hardest part and I'm trying to find solutions or just even a bit of help....feel like I'm falling apart at every seem....thanks for your story...I feel your pain and hope we all can find the strength xoxo

I am so sorry for what you are going through. I remember my son went through rages like that after he woke up from his coma. The Drs and therapist advised me that it was one of the stages of TBI. Thank God that he did move past it. I pray that things have gotten better for you.

Oh, this is so true. TBI took my husband. I have my husband but I don't. Our lives have changed so much not only he will never be the same as he once was, my family and I will never be the same. Our friends never understand that. Everybody sees him and says he is doing so good. Well, he is for what he has gone through but they don't see or live with this TBI. He struggles daily with just understanding. People don't understand when I say that I want my husband of thirty-one years back. I was told at the hospital in the first few days that this will be harder for you as his wife because he won't remember but you will. Oh so true! I do love my husband dearly but this TBI world is so hard.

A TBI stole my husband from me 4 years ago. I love that he is still here beside me but I hate that he isn't. He was my strength and now I've had to learn to be his. His strength and tenacity help me to find my strength. He helps me not give up, I mean, how can I if he won't? He's remarkable and incredible and my love and admiration for him has soared as has my heartache. Thank you for sharing so we all know we are not alone.

Corinne, I am so sorry about your husband. He is fortunate to have you. Sending love. ~ Nicole

Oh I loved your story. This was myself and my son almost 3 years ago after he suffered a TBI in a car accident. I have lived your story myself.
Over 2 years ago my daughter had a severe TBI with DAI shearing and I (a widow) am still experiencing these same emotions. I only care about her future and do everything possible to help her recover, but it never seems like enough to me. She is just 23. Your words explain these unfortunate tragedies perfectly. Best regards to you and your family.

Sweet mom, I am sending you my best regards as well. And lots of love. I am very sorry about your daughter. ~ Nicole