Hugs and Hard Truths

Dear friends of BrainLine,

I want to reintroduce myself to you and to thank those who have followed my blog over the last few years. It has been an honor for me to share.

My name is Nicole Bingaman. I am a mother to three sons, all in their twenties. My husband Keith and I will celebrate thirty years of marriage this December! I enjoy sailing, sunrises, reading, traveling, yoga and most of all…my family. Being a mother has meant everything to me. I now find myself an advocate and supporter of caregivers and brain injury survivors.

Our oldest son, Taylor, suffered a catastrophic brain injury seven years ago. He fell down the stairs in our home on Thanksgiving Eve. His body tumbled in all the wrong ways. Hitting his head multiple times on the wooden stairs, finally landing on tile over concrete. Taylor wouldn’t regain consciousness for weeks and remained in a coma. He went to rehab, where he started to emerge. I didn’t fully understand it then, but he was forever changed. So was I.

As with many in our situation I experienced feelings of hope and surprise as Taylor emerged. I also experienced fear, sadness, and much uncertainty. Taylor’s body was with us, but it seemed as if his person was far, far away.

During the first year of Taylor’s recovery, I utilized the Family Medical Leave Act. One year after his accident I returned to work. The next six years were a mish-mash of working full-time, providing or scheduling care for Taylor, and trying to figure out what people meant by the phrase “living my best life.”

There are some hard truths I’ve discovered about myself over the last seven years. Please know some of them require great courage to share with you.

Sometimes I resent the situation we are in.

I know this is awful, but feeling this way does not make me awful. Taylor was intoxicated the night of his fall. The fall was a horrible accident. That being said, I wish he had made better choices to protect himself. Sometimes I feel angry because he didn’t. I know in the deepest parts of my being Taylor would never have put himself or our family in this position.

It was a night meant for fun, but it was anything but. Oh to rewind each moment of Thanksgiving Eve 2012.

(This is the hardest thing for me to talk about. I constantly worry people will judge Taylor, or us. When I feel that way I hold on to the words of a dear, trusted friend…who reminded me, this was an accident. Accidents happen.)

Some days I wonder how I am going to hold myself together for an entire 24 hours.

This feels different than exhaustion. These are the days when all of my emotions are at the surface, the days I fear I am going to come undone. Most of all I worry I won’t be able to be put back together. So far, it hasn’t happened. Feeling like it might is hard enough. Caregiving means all emotional hands on deck. It involves actively caring for yourself and someone else physically, emotionally, and spiritually. It is a monumental responsibility.

Admitting my weaknesses does not make me weak. It actually makes me stronger.

I can be my own worst critic. Having intense emotions about a devastating injury is normal. Depression. Anger. Isolation. Feeling broken. These things are part of how I feel. As caregivers, we have the right to own, accept, and work through our emotions. They are ours. Having them and admitting them is equally powerful. When I give voice to the feelings I’d rather avoid, they lose their power. In sharing, I often find genuine connection, compassion, and concern from those who care, and others who “get it” because they live it.

I’m learning to let go of the moments I feel shamed for my feelings as a caregiver.

There are situations when I lose my cool. And I have to rediscover how to manage things.

I have high expectations of myself. I don’t want to yell at Taylor. I don’t want to get frustrated with him because of a behavior he is unable to control. I don’t want to feel like things are spinning out, but at times the volcano erupts.

TBI caregiving involves mastering the art of dodging endless arrows, and sometimes the arrows start flying before my eyes are even open. Those days are the hardest. Those are the times I must dig deep and work harder to make a concerted effort of my responses. How I respond to Taylor affects both of us. I can manage my emotions, and that takes work.

And finally,

Hugs are good.

A few nights ago we were standing in the kitchen when Taylor announced, “Group hug!” He wrapped his arms around his dad and I, and hugged us tight. It was unrehearsed, unexpected, and oh so sweet. I honestly don’t know where it came from.

I’ve found that hugs diffuse pain and hurt. When Taylor is feeling sad, I offer him a hug. I hold him close and remind him of the fact that he is an amazing young man. I might tell him how strong he is, or something I am proud of him for, or I might simply say, “I love you, Taylor.” These warm hugs, from my mama heart … have never hurt. They have always healed. They are something we can both feel good about.

Allow yourself to appreciate the value of a warm embrace, in whatever form it comes.

As caregivers and survivors we must continue to be gentle with ourselves on this journey. It is hard enough. We can offer ourselves the freedom to admit our difficult stuff. We can also support the freedom to find positive ways to sort through it all.  

Still believing that love wins,

Nicole