What I Know Now

What I Know Now

Last month I wrote that brain injury has been a great teacher in my life. This much I know to be true, but as my family prepares for our third Alive Day this August 18th (the anniversary of my husband’s survival), I’ve begun to embark on my annual reflection of the specific lessons I’ve gathered throughout our experience with brain injury. Like other caregivers, I believe I’m a changed person from who I was three years ago, before the term “traumatic brain injury” ever entered my lexicon. Changed too is my husband TC, who looks very nearly the same, but for whom daily life continues to hold constant challenges. In three years we have evolved in shifting states of matter: broken, bent, and only recently, solid again. And throughout this period we have learned lessons that, for many, take decades to acquire. These are the lessons I wish I had been born with, the lessons that have allowed me to access my most authentic self, helping to guide our family out of the grief and back into the sunshine.

This is what I know now:

You will survive.

I never thought I’d survive the ambiguous grief of losing my very best friend. In the days after TC was assaulted, I remember thinking that I’d never be able to go on if he died. And it goes without saying that I’m eternally grateful I didn’t lose him completely. However, there was still a loss. He was alive, but I still felt devastatingly alone most of the time. Within an 18-month period, my husband had been nearly murdered, my mom was diagnosed with cancer, and my father passed away. How else can I describe it but as a hellish trifecta of life events? It was a period that threatened to sweep me into a sea of depression at times, but I survived it. And now I see that grief and sadness are a natural part of life. What reassures me as I examine the world these days is the affirmation that humans are built to withstand unimaginable things. We will all confront a rainbow of heartache in our lifetimes, but as Diana Ross famously reminds us, we will survive.

Life is supposed to be fun.

Anxiety, stress, obsessive thinking. These are the byproducts of living in a fast-paced, mentally overwhelming society, and they are habits that TC and I once regarded as “normal” in our pre-TBI life. But never before have I been more convinced that life is simply supposed to be fun. Yes, there will be unavoidable struggles, but giving into self-doubt and negative thinking is consuming and wasteful and generally not our thing anymore. These days our time is better spent participating in epic dance parties, planning picnics, and laughing until someone cries or snorts (or both). Jack, our four-year-old son, has been an excellent teacher in all these skills, and I credit him as our number one guru these days. Perhaps we all need a fun guru to show us the way!

This is it, folks.

One of the consequences of surviving trauma is that you start to see danger everywhere. Suddenly everything has the potential to kill you, and it’s hard to shift your mind away from all the worst-case scenarios lurking behind every corner. My own line of obsessive thinking (which I consciously work to curb!) is dwelling on these dangers and wondering when and how I’ll meet the next major loss in my life. But here’s the thing: I can’t control it all. Life inevitably comes to an end, and I want to take my last breath feeling that mine was a celebration of the world and all it has to offer, not just a very long warm-up to a funeral. Likewise, I recognize that the people in my life won’t be present forever, so I choose to cherish them now, to share with them the things I admire about their character, and to hold the hug for a few seconds longer. This is all we get. It truly is.

Go your own way.

In one respect, brain injury survivors and their families don’t really have a choice about this one. No longer do TC and I “fit in” with our family, our social circle, or our community as we once did. And though I tried hard for awhile to make us fit, I eventually found myself exhausted and disappointed by the results. Fitting in is no longer a practical or useful goal. Now I simply wish to illuminate my own path in life, to honor the things that feel real and alive within myself, and to block out the noise and indecision that threaten to steer me away from my own truth. It’s not easy sometimes, but I have to believe that whatever the price is for pursuing the life that best fits your soul is worth the risk. I don’t want anyone else’s life but my own, and why should I?

But all of these lessons boil down to one essential philosophy:

Choose love over fear and gratitude over sorrow.

Elizabeth Gilbert, the author of Eat, Pray, Love, writes, “Your fear is the most boring thing about you.” And isn’t it so? I’ve given into fear more often than I’d care to admit in my life, and the result is almost always the same: I purposely shrink my world, and I dull myself in the process. When I choose love, the opposite happens: I open myself up to the world and allow the blessings to pour in. Choosing love has allowed me to choose gratitude, which in turn, has allowed me to change the way I view everything. In the beginning, I looked at our circumstances, and I felt pitiful. But families of brain injury are not unfortunate or marred. We are tough. We are resourceful. We have the opportunity to create a happier existence for ourselves because we have experienced first-hand the gift of life.

So, this is what I know. Life is good. And we are so very alive on this Alive Day.

Comments (20)

Thank you for the reminder that I need to keep it simple. My son is 10 months into recovering from a TBI. He was 19 when it happened. It is so true that there is still loss even though he is here. I love everyday with him! However, some things are not the same. I found your blog after I started searching for support. I know to everyone else he looks healthy and 'ok', but they don't realize that he is still healing. I have found one of the hardest things is time. Years, months, days...it is hard to slow down to give him the time he needs. Selfishly I want him better now. One of the hardest things to accept is that 'better' may forever be different. 

Thanks for the inspiring words. I found them in a time of need. You have done a wonderful job of describing the changes that we face.   

Another insightful piece! Thank you!

Just an FYI, it was Gloria Gaynor rather than Diana Ross who should be credited for "I Will Survive".  (-:

Im going for a Neuro Pysch testing which will last at least 4 hours, alot has happened in the last 8 yrs. Mom and Stepdad died of Cancer, her Ovarian stage 4 , his was Lung , then my Grandfather Alzheimers in 2010, My Dad 2013, then my daughters father was killed in automobile accident in 2014_.. I was hit by a car in 2013, trying to catch a bus , I have a TBI , I go weekly for Therapy ,among other Dr appts.. So with said I start next week to see what is going on and so forth...

Abby,

A well written piece by someone who has accepted and adapted to living with someone who has sustained a TBI. What was once "A" is now "C" or "D" if not "E" or "F"... life changes 24/7 no matter what your state of being is... TBI intensifies the change... for a caregiver, the plight is the same... except the journey can only be encoded from the outside... usually. Shared moments create shared healing, which is a better route to travel... pain is pain, gain is gain, and the train travels on irresolutely... a piece in the functioning of karmic activity in a universe that was spiraling out of control, at the time... the situation that has brought traumatic brain injury (TBI) into our life has balanced the up & down of life... into a state of equanimity which results in an understanding of "Just Right."

A thank you hardly seems sufficient but I do, thank you, for helping prompt life, as it is changed, through tragedy.

Great article,  I have been caring for my husband who suffered a TBI 7 years ago.  I needed to read your article, My husband and I really don't fit in anywhere.  It has been hard but we really do have it within us to become stronger.  Thanks

Thank you, it will be three years next month for my Alive Day. Your words ring true and as I said to my wife, caregiver & best friend, hang this message on the wall to review and use as a "Life Check" now and again.

Thank you for your reminder to focus everyday on what's good. Life is meant to be fun! Even if you have to make an effort to find it every day! We, too, find ourselves grateful for the new outlook, despite the daily struggles. Best to you and your family!

Today 8/24... we celebrate our daughter's 2 year anniversary of her survival. Your words of wisdom are truly heartfelt and true on so many levels. Our family's journey throughout Erica's recovery have experienced many of the same life dilemmas you describe. Slowing down and appreciating the simpler pleasures in life have helped us the most.  Life is a Gift.. our daughter's survival and recovery is a miracle from our Lord.  We will cherish every single moment we are privileged

 to have her

It would be So Much Better to get our learning w/o the work of lessons, but life doesn't seem to work that way. So we aren't born knowing what we need to know. My Hand to the Forehead moments are so obvious...finally. Your knowledge is won in the hardest way. Yours forever. And so are the blessings of great love. XX Karyl

Unbelievable set of circumstances. God Bless You and your family.

I agree with everything that you have so brilliantly stated! Our son suffered a TBI 16 months ago and our daughter-in-law has been amazing. She follows your writing and draws inspiration from your reflections. Please continue to write about your journey!

Thank you!

THANK YOU FOR PUTTING HOW YOU SEE THINGS NOW, =D
I hope one day I will feel '''better'''' from my TBI.
I do have my kids to show me and teach my brain how to be 

Abby,

Once again you capture things so beautifully with a perfect balance of reality and hope. Thank you for being so dedicated to helping those of us who are not as far along in our journey see what it may look like down the road and for filling us with both hope and truth. You are an amazing person. 

Best Regards...always. 

What a beautiful way to look at life and certainly a great way to live life to the very fullest. Not only does this apply to those touched by TBI but life in general. We all have our battles and challenges in life. Thank you for sharing your thoughts as I am sure most everyone can greatly benefit from your words.

Beautifully written!!! 

Thank you. Still trying to learn some of these.

Beautifully said! May you continue to find joy and love in each new day. I know some days can still be a challenge; my now 19 year old son is four years Alive. I thank God every day for him.

That was beautiful. I can so relate