Alex Haley, the author of Roots, penned these words: “Find the good and praise it!” I first heard this phrase in 2004 when I was struggling with acceptance and seeking an understanding of why brain injury seemed to haunt my family.
I am the wife of Jim who had a benign brain tumor removed in 2001, but who has had many complications from this tumor. Brain infections, placements of brain shunts, more brain infections, more shunts, and each time he suffered additional cognitive decline. Jim struggles with memory and organization, problem solving and impulsivity. As a wife and caregiver, I am constantly on guard for signs of additional shunt blockage. But I am in awe at his resilience and continued self-sufficiency in life.
I am the mother of a young woman, Kara, who suffered a severe TBI at age 5 when she was hit by an out of control skier. Kara says, “I have abilities, not disabilities.” I agree wholeheartedly, as she is fiercely independent and leads a self-determined life. However, I must at least describe some of the challenges she faces: (L) Hemi- paresis, and a significant 50% visual field cut that has left her legally blind. She is unable to tell time, read beyond basic sight words or understand math and money concepts. Despite this, she lives in her own house about six blocks from us.
As much as I celebrate my husband’s and my daughter’s ability to live lives full of meaning and purpose, I must confess to my moments of weakness, sadness, and grief as I think about what could have been and should have been.
I don’t often go down this road as I truly believe that we must “find the good and praise it” in so many aspects of our lives.
I have made this a mantra and part of my daily life: Get up every day and face the challenges that each day can present. If I focused on Jim’s challenges with problem-solving, his difficulty remembering even what he did a few hours ago, or Kara’s asking me to “please read this” as we look at the morning paper, I could drown in feelings of Why us? Life isn't fair! It's too much.
So I focus on the pleasure of walking Kara’s dog early each morning, knowing that I will be rewarded with the best coffee in town when I sit down at her kitchen table to sip the drink she has made just for me. Find the good and praise it.
I belly laugh at her drama queen descriptions of events in her daily life. Find the good and praise it.
I go to church on Sunday and listen to Jim and the choir singing the beautiful songs I remember from my childhood. He is part of our community and is making a difference. Find the good and praise it.
I see Jim volunteering at our local Catholic Charities and being involved in Kiwanis Club. Find the good and praise it.
Does it always work to try to have this in the forefront of my day-to-day life? Of course not. Sometimes nothing helps but to go down that pity party road. This past weekend, our small community celebrated “Strawberry Days.” This is a summer festival that brings a multitude of visitors and old friends and neighbors back to our town. This event is faithfully held on Father’s Day weekend. I have noticed for the past few years that I have less and less joy in what used to be a very enjoyable beginning of summer celebration.
As I see Kara’s former childhood friends come back for this weekend with their children and hear about the wonderful lives they lead – I am sad.
When I see our old friends, husbands and wives, laughing and sharing memories, I am weighted down with the burden of being the only “memory” for Jim’s and my relationship - and I am sad.
Like those of us who have been at this business of life after brain injury for a long time, I am aware of the steps, stages, and passages that we go through, not only as the individual who has sustained a TBI or an ABI but also as a family and as a caregiver. I know that I am experiencing “recurring grief” and that I will do a “spin dry” in this cycle and come out ready to cope again. It can be very hard to “find the good and praise it” during these times. But I know where these feelings are coming from and can even wallow in them for a bit.
Then I go back to the fact that we have found some helpful technological resources that support Jim and Kara in their day-to-day activities. I see their joy as they demonstrate independence every day. Find the good and praise it.
And sometimes, like now, just sitting on the front porch with Jim, watching the summer sunset, seeing him relaxing and reading a book – I can find the good and praise it.
Alice Brouhard lives in Glenwood Springs, Colorado. She has been a strong advocate in the brain injury community for years in her profession as an RN, and in her personal life as a spouse and parent of individuals with brain injuries. Alice loves to research and utilize technology to support her husband and daughter. Besides technology, she maintains that faith, family, and friends make all the difference in supporting those with differing abilities.
To contact Alice for workshops or speaking/teaching about technology use to help people with brain injury, email: firstname.lastname@example.org
Hear more from Alice in her 2016TEDx Talk: How an app gave my daughter a voice, TEDxRapidCity
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.
Anonymous replied on Permalink
Excellent article. I love your quotes "I have abilities, not disabilities", "the spin dry cycle", "the pity party", and the other commenter's quote "Get busy living or get busy dying." I too, have had to say most of those things to myself, as the caregiver for my adult son with a severe TBI. Although, the "spin-dry cycle" is a new quote for me, I like that one, it totally makes sense. Thanks.
shannon replied on Permalink
You are an amazing inspiration! Thank you for sharing your wisdom and insight with us through this article. It makes me realize how important it is to enjoy the moment, and all the little things in life. thank you!!
Ellen S. replied on Permalink
This is THE best piece of advice —for anyone, as Ruth above notes, but especially for parents raising children with special needs. There is so much good to be seen, sometimes we just have to refocus the lens through which we see the world. I think I'm going to write this out on a sticky note and keep it on my computer. Or forehead!!!
Ruth replied on Permalink
This article is so enlightened, Alice! What wonderful advice for anyone-- stay on the sunny side of life and live in the present, or as my husband likes to quote, "Get busy living or get busy dying." From the Shawshank Redemption. And you speak of your grief with such wisdom too. To heal ourselves, we must touch it and feel it to move through it, and it is something that will cycle back from time to time. It cures us to do this, in fact. You are so courageous, loving, and wise. It is an honor to know you.
Alice Brouhard replied on Permalink
Thank you for your kind words... life is a journey!
And we may as well live it!!
Melanie Ayer replied on Permalink
This story brought years to my eyes I have been struggling with my son who has brain damage due to a tumor. He is legally blind and tons of medical problems due to this. It's always nice to read a article knowing I am not the only caregiver feeling this way the same as you.
Alice Brouhard replied on Permalink
Thank you Melanie,
Wish you nothing but the best for you and your son… You are not alone.