The Afterlife

The AfterLife

It can take years to accept a loved one’s afterlife, and it may take a decade. I’m not talking about life after death; I’m talking about life after a family member’s TBI.

The changes following my husband’s injury were intense. After Hugh had suffered a severe TBI, I did not see the world in the same way. Life felt cruel as I watched him struggle and suffer. It felt unfair when dealing with insurance battles, traffic court, and endless phone calls to figure out who and what might help. Money drained from our household at an alarming rate, and I was too busy and exhausted to work. Life was not only different; it felt alien.

But one thing didn’t change. My family had love before the accident and love after—the kind of family love that deepened from this family tragedy. There were tensions and arguments because all families go through that, but we somehow managed to get through the most difficult experience of our lives.

A lot of the tension, I now know, came from me. I cared for Hugh after his TBI with a singular, laser-fixed focus. It was similar to the protective feeling I had when my premature twins were first born, tiny and fragile, but it was more intense because Hugh was dangling near death, grasping the thin rope of survival, and I jumped on that rope with him. I was with him, body and soul. All of my mental and emotional energy surged through me to him, as if electricity were running through my veins. I sometimes felt as if people should see sparks shining off my skin from the amount of fight or flight hormones flooding my body. For a full year, I had no interest or energy for anything or anyone that wasn’t directly working on my husband’s TBI.

This left our young teenage daughters on their own, although many surrogate parents stepped up to help: friends, my sisters, and grandparents. While I lived with my daughters and acted like their mother, my mind was far off, and they knew it. They saw that I was unreachable and made their way as best they could without causing any extra pain. Fearing they might lose both parents, they clung to each other, and to this day, I am grateful these sisters had one another.

It took me some time to realize they had significant residual effects from this family injury that remain to this day. Both of them know, in a visceral way, that life can change instantly. Both of them know too well the intricate workings of an ICU. Both of them learned how quickly they could lose a loved one at too young an age. They lost the chance to be kids when their carefree life ended in a split second at age fourteen, and I know they saw and heard many things they wish they could forget.

Both girls have told me that perhaps their father’s injury has made us all stronger and closer because we drew on family love—the kind of love that made us able to cope with all the pain and all the struggles his TBI threw at us. That’s the one thing Hugh’s TBI did not strip away.

If you are a family at the beginning of this journey, please remember that through all the tension and heartache, through the pain and waiting, love remains constant.

Love doesn’t change. Circumstances do. Injuries may cause pain and suffering, but love comforts and soothes. Counting on and accepting family love after an injury can make the changes that take place in the afterlife easier to navigate. You may feel lost for a while, but you will find your way eventually. Things will calm down. Outcomes will occur, and you will deal with each one as they arise—not because you want to—because you have to.

One therapist reminded me to take one minute at a time and to stay close to those who could help me. She advised me not to push people away out of grief or frustration. Living through and openly expressing the pain you feel can solidify relationships and help family members cope when times get rough. I know that talking, crying, hugging, and insisting on hope helped my family to heal.

My wish for all families that go through this devastating injury is that they rely on each other for support and understanding because it’s so impossible to adequately express feelings to people who have not lived through a TBI.

There is a large community here at BrainLine that can connect with you even when the immensity of the situation makes you feel like you are drowning. Keep looking up to the surface. Eventually, although it may take a very long time, the after in afterlife will drop away, and you’ll just be living your life again.

Comments (10)

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Rosemary, This article is Perfect! I feel completely connected to someone who understands me and what I am going thru. Thank you. 

Hi. My name is Laura. My 55 year old husband was just diagnosed with CTE. In 2013 he was diagnosed with FTD, but when it progressed so quickly about two months ago, with the very quick slip slide changes, the Neuropsychiatrist, at the hospital he's been in, re-diagnosed him. The heartache we feel is unreal. I have two kids in college, 19 and 20. After working from 7-3:00 each day, I go to the hospital about 45 minutes away every day. When I come home at night into what was our newly formed empty nest, I just break down from the kind of agonizing pain, the likes of which, I have never felt before. The next step is to find a long term care residential facility. For which I pray he is eligible for Medicaid...I am completely heartbroken. In a couple of weeks, we'll be married 25 years and have been together for 28... The second half of our journey together was just beginning...

You did it again Rosemary!!  You came up with the right words at just the right time...June 2017 will be 10 years, and I have often felt I must be "falling behind" because I haven't yet fully embraced our new ever changing normal...and once again your timing with this blog post could not have been better...thanks Rosemary!

P :)

My son suffered TBI in an auto accident at age 20. His friend was driving intoxicated, my son was intoxicated. His friend lost his life. My son is now an extremely awful alcoholic. I always say I mourn his potential.

Yes, attempting to handle at TBI injury, whichever end of the matter you sit, is overwhelming, to say the least. But, struggle always results in resolve, one way or another, And struggle deepens one's understanding of this odyssey known as life. Good, bad, it cannot be said..."just right," ingratiates acceptance and thus the reflections can begin in earnest. A path, a path, a path... such is the way of life, a life to follow, a life to lead... again!!!

Thank you for sharing. My sister had TBI due to a car accident 16 years ago (I was 14 at the time). Life changed in minutes! From routines, to seeing my parents struggle with overwhelming bill. I felt the need to step up & be a caregiver for my younger siblings in this time of need. No extracurricular activities, no prom & the hospital was our second home. Yes, we had many arguments, confused emotions but your so right...  Love remained & made us stronger. I learned the meaning of life, appreciation for every breath I take & it guided me to seek a career in the field of TBI. After 16 years, my sister is not fully recovered, she never regained her speech, had a grudge, and needs care for at least 20 hours of the day. It's difficult but never impossible! My family now sees it as A BLESSING. Because my sister has been the most perfect example of a fighter, warrior and champion. My family would not be here with so much love & passion for life. for all those going through similar situations, DON'T GIVE UP :)

Very well written... you expressed my exact thoughts after being with my TBI husband for 18 years now... I say to people I was married to my first Jim for 25 years and this Jim for 18... and I know most people just don't get it... thanks for your thoughts!

Dear Rosemary,

Congratulations on yet another wonderful article - so open, heartfelt, and helpful. When you were a guest on my radio show, I commented on how our lives parallel each others'. Each of our husbands had a brain injury and we were thrust into the position of primary caregiver and we took it on willingly. I relate to your comment about "singular, laser-fixed focus."  That was me too - still is. I liken it to a mama bear protecting her cub. I don't think that will ever end. The "afterlife" will continue, but I am so grateful that we each have an "afterlife."


Donna O'Donnell Figurski

Beautifully said. 

So true and beautifully written. My TBI and PCS are nowhere as severe as many, yet my life and I are not the same as before the accident. I know it has impacted my adult daughters who had lived with me, my now life partner, and my daughter who grieves I cannot interact fully with my 10 month old grandson.