A New Kind of Optimism

A New Kind of Optimism

As the mother of a twenty-five-year-old traumatic brain injury survivor, I find myself reflecting on the effects of the injury that changed our lives three years ago. In the beginning, medical staff frequently reminded us, “This isn’t a sprint, it’s a marathon.” The message being conveyed was that we needed to slow down because this thing was going to be with us for a while. The quote reminded our family to conserve our strength, energy, and abilities to stay the course with Taylor. At the time the words provided valuable and clear direction for us. 

In reality, family life involving a traumatic brain injury is more than a marathon. TBI is a cross-life trek, which is here to stay.  For us, it not only defined November 2012, but it has been the strongest presence in our daily lives since. It is certainly not a sprint, but the word marathon does not fully encompass the magnitude of our circumstances. Brain injury is something that whether we like it or not, we have to move through daily.  It requires endurance to the highest degree and gives words like loyalty and perseverance new depth.

Medical truths were shared with us at the onset of Taylor’s accident. I am grateful that things were communicated in a way that was not overwhelming. It was like introducing an infant to food, slowly, with great thought and observance as to what could be handled. No one force fed us or gave us something that our emotional systems were not ready to process.

During the months that followed Taylor’s initial weeks in the ICU, while at an acute rehab facility, I learned more about what might possibly occur in the coming days. The medical staff used teaching tools to whisper about the things that were ahead, partially because they knew that a brain injury of this magnitude has a way of screaming to get attention. The whispers were the gentle approach that my husband, my other two sons (ages sixteen and nineteen at the time), and I needed.  Mostly, these professionals stayed present with us moment to moment.

Around month four of recovery, we abruptly discovered that seizures would become part of our routine. The surprise attacks snuck up, much like the injury—unwelcomed, unannounced, and often unstoppable, with unpredictability and a forcefulness that I had not previously imagined.  Once the seizures were part of the diagnosis, we learned all that we could about them.

As more time passed, we experienced first hand that Taylor’s lack of ability to filter his thoughts and words would have a profound impact on our home and our relationships. I did not understand in the beginning that as concerned, worried, and heartbroken as I was for Taylor, I would, in time, feel equally devastated for every member of our house. Taylor’s body and mind sustained the injury, but it has taken a harsh toll on those who love him most.  

Brain injury happens to a family.

I was ill-equipped for how this particular grief would play out. I familiarized myself with ambiguous loss and tried to understand it within myself.  One day, almost a year after Taylor’s injury, flooding hit me with a force that was undeniable. My heart ached so desperately that I did not know if I could survive.  I felt incredibly hopeless, but I knew his success in recovery was tethered to my being centered and optimistic.

The second year following Taylor’s injury was the worst of my life, and as we enter year three, I am still surprised at the level of sadness that this carries. Grief and adjustments to what we thought would be, are all a part of the race we have been called to run. I also acknowledge that some of the feelings of devastation and shock have lifted. I like certainty and closure; in this case, both are difficult to come by. I have not given up hope, but I have learned that sometimes the acceptance of certain reality gives freedom for a new kind of optimism to surface.

People are genuinely happy to see Taylor doing remarkably well. He has made terrific strides, and we are proud of his recovery. But there are times when I ache to hear, “I miss him too.” Separating the old person from the new is not hard for me as Taylor’s mother, but the feeling that sometimes I am not allowed to grieve the person we lost is most challenging. This road is not frequently traveled, and as families of traumatic brain injury survivors, it helps to let others in and educate them about what this really means for us.  Not sharing our truth can feel stifling.

It has become a process to accept, acknowledge, and own my feelings. Allowing myself the liberty and freedom to work through my emotions without apology is something I address often. There is a pressure to get through this, to be happy again, and to somehow find the pot of gold at the end of the rainbow, and quite frankly, some days it isn’t there. That is okay, we are all doing our best, in some of the very worst of circumstances, and we survive it with a mix of hope, truth, and acceptance of where we are now in this lifelong race.

Comments (11)

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My 20 yr old son suffered a severe tbi from a car accident this past SuperBowl Sunday (2/3/19) , he spent 11 days in a coma & 123 days in rehab before finally coming home on June 6th. He was non-verbal when he came home so as happy as I was to have him home, I longed to hear his voice again, I would replay old snapchats of him just to hear him talking & was ecstatic when he finally began to speak again, but he didnt sound the same as he had before, I didnt realize it at the time but I had been holding onto the hope that his voice would be my connection to the son who had left the house on the morning of 2/3 & now even that was taken from me. I'm so grateful to still have my son with me but my heart aches for that kid who walked out the house the morning of the accident, the one I raised for the past 20 yrs, the kid who would tell me goodnight every night, & tell me he loved me everyime he left house, the one who would stop in front of my closet mirrors and ask me "how I managed to live with the fact that I brought such greatness into this world" lol, his self confidence was like a drug that pulled people to him & now it feels like hes gone & my biggest fear is that I'll forget who he was. I feel like I have to keep up this facade of just being happy my son is alive in public while grieving for the son I lost in private, because thats what is expected of me. People see the improvements but only I see the differences & all I want is for someone to tell me that my feelings are valid which is what you did with this story so thank you for that.

Powerful story. Thank you for sharing.

Still can't imagine! So often I think of our times of prayer at the altar & our joint tears! Love you so much & hold you & your family up in my prayers! Love, Barb

I was great to see Taylor doing so well recently and yet, while with him, still missing the way he used to be and realizing he has come back only so far and cannot, has not yet returned as the Taylor we once knew, the young man who could do anything he set his heart and mind to doing. He can do a lot but it is still so little of what was once so much.

And then hearing about his most recent bad seizure yesterday, my heart was broken once again, with a flood of tears running just below the surface, making me lean against the wall and just cry at times. I could picture Keith holding him in his arms while you helped your young girls, family visiting from far away, to a place where they did not have to take in all that a bad 'grand mal' seizure does.

Love from EV

Thank you for your honesty. I will share this story as I am sure it will help others.

To Your Sons situation, I would like to share my Sympathy, to Your Family a slight piece of insight.This is Not about myself, but maybe it will be helpful in relating to your son. I had a brain injury at the age of 12, which in the 1970's went untreated. At the age of 18 I started having seizures due to the injury, and for 23 years I had to live a life with this disability. In 2007, I had a Right Temporal Lobectomy, Brain Surgery, and it put a STOP to the dilemma I had for so long endured. When the surgery was over, and to this day, I still have Family say that They Wished they could have the OLD ME Back. This Situation is Reversed from Your Sons, as I am no longer sick, but the point is, I AM ME NOW !!! Please Try to make Your Son Comfortable, all the while going out of Your way to make adjustments so that He can Feel that HE is The Same Human Being as He has Always Been. Life is Different Now, But Taylor is STILL TAYLOR. GOD Bless You All.

We have a friend that is unresponsive with a massive bruise to the center of his brain from a motorcycle accident. Doctors say he can hear. Isn't this a sign he could still make it?

I know how it feels to miss the old person. My husband of thirty years had a motorcycle accident has tbi. He has overcome so much in 16 months and we are so blessed but i have him but i don't. I miss the way he loved me so much the way he looked at me. He still loves me but it is not the same. And seizures oh goodness. With his first one four months after accident was something i didn't realize what this was. Found him out side no clothes on then the worst thing i have ever seen. I see our pregnant daughter holding her daddy crying thinking he was having a bad stroke. Our faith in God has done miracles and our faith in God will see us threw daily. But it is hard. But I loved my husband before his accident and I love my husband after his accident. He has had some really good changes. We laugh and tell people it is like being a chicken - everyday is a new day.

Yes thank you for sharing how you feel. But also please let him know that you love and care about him as he is now. There is nothing worse than feeling you are an inferior version, not the one that is wanted. That there are some who would rather you are dead, because you can't give them what they want in the same way, play the same role. Please see the person inside and relate to that person. The fact that we can't express that we are still in there, does not mean we are not still in there. I've seen over the years how how others are to me shapes how I am able to be. And yes, this takes a long time, to be and to see.

Lara, you are so welcome. Thank you for sharing your heart with us here. Much love, Nicole

I really would like to thank you, for the inspiration. Been quite a hard treck for me, without caregivers or family. My brain injury occurred in 1993 (right frontal lobe craniatomy) I seemed to be doing good until 2010, when I became very over stimulated and stressed and doctors whom did not listen to me decided to put me on medication and electrocuted my brain. Which really set me back. I am a proud mom of a 23 year old daughter who has grown up unbeknownst to her that her mom is disabled with a brain injury. I was 21 in 1993 and lost 21 years of memories, having my daughter is a huge blessing, as she became my teacher. Quite sad that family abandoned me. There are good days and bad days and its sad not to have someone to share my life with. Gets quite lonely. Makes it even harder with the cognitive and executive problems and really not knowing who is a true and trusted friend. Being vulnerable since 1993 and not having someone there for you is traumatic in itself. I have had to come to grasp with another round of amnesia and only realizing I have been having seizures since 2010. I have been writing, and am going to try posting these abstract random thoughts on a blog. Thank you, once again.