Sitting With the Suffering

Nicole Bingaman Beautiful Truth April 2018

Yesterday, I was walking with my workmates on an afternoon break when a gentleman started discussing his upcoming retirement. He and his wife are looking forward to taking the trips they’ve been dreaming of, and settling into simpler, slower days. While I felt happy for my friend, I also noticed a knot forming at the back of my throat.

I began to contemplate…what does the future look like for me? Where will my husband and I be in fifteen years? Will Taylor still live with us? Will we have more freedom? Will I survive twenty more years at this pace? It dawned on me that I may never retire from my current role. Suddenly I felt a rising panic and palpable anger. I did what I often do; I swallowed my feelings whole and put them in a place where they could safely reside until I was ready to process them.

At home that evening, Taylor shared with me that the person he considered his closest friend before his accident had become engaged. I sensed Taylor wanted to express the appropriate emotion and be happy for his friend, but I recognized he felt conflicted. Taylor often lives in a land of yesterdays and is not completely clear on how life in the present day unfolds. He gets stuck on things like not being able to drive or work, and the absence of a significant other, and he wonders what his future looks like. I can relate to the fact that having the map of your life suddenly discarded and replaced is extremely confusing.

I shared with Taylor that it was normal to be happy for his friend while also feeling sad and a jealous about the engagement. Being permitted to share the truth means acknowledging the places we find ourselves. I want Taylor to learn to manage his emotions, and not feel like he should ignore them.

Anger. Sadness. Jealousy. Grief. Frustration. Despair. Hopelessness.

These are emotions we tend to avoid. They are almost taboo. For example, when someone asks us, “How are you?” We automatically answer, “Fine.” What if our answer was, “I am in so much pain I’m not sure how to get to the other side of it. I need support. I need a hug. I need to know my sorrow is valid and that I matter.”

What if, instead of avoiding our suffering, we sat with it? What if we picked a sunny spot on a bench, got out a tablet, and wrote down how we feel in our darkest moments? What if we acknowledged the struggles instead of ignoring the pain? What would happen?

I can tell you what wouldn’t take place.
The world would not come crashing down.
You would not feel worse for owning your pain.
And you would not become more defeated.
You might actually find freedom in your openness.
To be vulnerable requires courage. It often requires a large measure of it.

I’ve shared my personal struggles with brain injury on Facebook. I selectively share some of them on the Team Taylor page. We have several followers who are part of the brain injury community. Through the page, I’ve built meaningful connections. One of the common messages I receive is, “Please don’t stop sharing. You’ve captured what I feel, and it has made me realize I am not alone.” No matter how often I hear this, I still battle with publicly acknowledging my negative feelings about Taylor’s injury.

When brain injury comes into a family, it is an unwelcome guest, sitting at the table every single night. In time, you have to learn to accept the guest, and what the presence of it means. You can’t just pretend it isn’t there, and you can’t act like you know the totality of all that is involved.

This is what I know: neither Taylor nor I can safely say what our futures might look like. He is still recovering. While we know it will be a lifetime, I believe there are more milestones to come. I can say with certainty, as long as I have breath in my body, I will support Taylor. I don’t know the paths that we may be asked to walk, but I know that as long as I am able, I will do my best.

Sometimes, Taylor and I misunderstand each other. He wants me to know his frustration and ache is ever-present, and I want him to comprehend that his injury has affected his entire family. I hurt for him. I also hurt for his dad, brothers, and myself. Gosh, it is complicated, isn’t it?

Sometimes I want to run away and push all of our problems to the side. I don’t want to figure out another caregiver scenario or therapeutic solution. I want life to be normal again. I want to go back to the days when I was clueless about ongoing FMLA and knew nothing about countless medications. I want to be the mother of the groom, dancing with my son at his wedding, dreaming about grandbabies.  But that is not our reality. Our reality takes a different kind of work, dedication, and determination. I am the one who must accept that. I am the person who must make peace with my part in our story, and all of the chaos, uncertainty, and ache that it brings.

The most important thing I can do is to acknowledge where I am on any given day and allow Taylor to do the same. Suffering is part of life with brain injury. Thankfully, it is not present every day, every moment, every hour…but it is there. I have known very few people who truly heal by ignoring the reality in front of them. We heal when we own and accept the fragility of our emotions. We heal when we give ourselves permission to share, unashamedly. It doesn’t mean better days aren’t ahead…it just means that we are not experiencing happiness now. And that is okay.

Comments (9)

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I just happened on this website and this blog. I was looking for people who had a young adult in their family with a brain injury. My son recently had an accident (July 6, 2018) which left him with an anoxic brain injury. He's 20. We are in the stages of learning to walk again and everything is so uncertain. Thank you for the acknowledgement of these feelings. It brings tears to my eyes and stirs my soul because of the truth behind the words.

4 Months into my 28 year old sons diffuse aonal brain injury from a car accident, I was told he would be at his baseline at 3 months, but to encourage people, he is now moving his mouth, he had given his mother a kiss on her cheek Thanksgiving day and everyday sense. I was told he won’t be the son you know, but he is the same son with a different personality that I love as much, if not more. I can’t say I don’t miss his jokes, his wit, and conversation. Sometimes the grief is so bad that I can’t stop crying, but I am learning to really depend on God. Thank you all for sharing because I need to hear how others are dealing with TBIs. My son is making progress every couple of weeks, but as I sit by his bedside, I thank God he is still here as we watch movies together, and as I watch him sleep peacefully often. It really is one day at a time. Again thank you for sharing your stories.

Kim, your brain injury family is here for you. I hope you can feel our support. I am so sorry about your son. With love, Nicole

I think all of the above was 100% true and it was nice to know others have troubles in their own lives.

Isn't it beautiful when we can find comfort in others who have walked our road?

This article is so incredibly true and so hard to actually put into reality. The thought of having a loved one that you know will be with you for the rest of our days is overwhelming. It also brings up another incredible fear of mine. Actually 2 fears, and I honestly don't know which is worse.

1. How will I ever cope if my son dies before me? Can I burden the pain of knowing his early death is a result of my actions?

2. Who will care for my son if I die before him?

Much easier to shove these fears as deep into my soul as possible. Can't get much more unhealthy than that! So thanks for putting it out there and encouraging me to deal with these feelings openly and honestly!!

You, Nicole, are a gift to so many!

I am reading your words, and weeping. I feel scared with you...for you. With love-Nicole

Don’t ever stop expressing yourself, especially truthful insights such as the ones above! You and your writing about this life you lead is a gift to others.

Thank you for your frankness. I’m in your shoes and feel your heartache. It’s been 6 1/2 years since my son’s brain injury due to a tumor. Summer can be particularly hard when his “friends” are home from college and doing normal things, but he is never asked to participate. You are not alone, though I know it often feels that way. This is a club no one wants to belong to.
God Bless, Lisa.