Hugs and Hard Truths

Nicole Bingaman smiling at camera

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

Comments (27)

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.

Thank you for this honest and heartfelt post. My husband nearly died 11 months ago and due to the lack of oxygen to his brain during CPR he sustained a brain injury. It could be so much worse, but still he is not himself. He used to be vocally and physically affectionate and now the best I get is a returned hug and “I love you too”, but I am thankful for that no matter how much I miss the “old” him.

Love always wins. It is the basis for our journey in the world of TBI. My son was assaulted and robbed while on holiday with buddies in London UK, 29 years old. My life and heart shattered that Dec. morning. Life saving surgery was done while we were in the air going to him. He survived, he woke up and he is a warrior. He has been back and forth to rehab twice with complications arising - hydrocephalous ( 3 shunt surgeries), syndrome of the trephine ( emergency craniotomy that had to be removed) We are now waiting for another surgery to replace the plates so he can get back to rehab. I feel like we have been to war - a medical war. But in all of the stress, anxiety, waiting, and sadness we still find joy and laugh and HUG. When the kids were little I use to give them hugs "for strength" going out the door each morning, now more than ever we use that phrase. The first day he was able to stand and look down at me (6'4") I gave him a hug for strength and now each time he does it. Faith, hope and love have guided us. A mother's love I believe is divine and there is nothing like it when I put my hands around his body to help him recover. Keep giving the energy through hugs - it works. Before I left the hospital over the holidays my son called me to his bedside and in a strong clear voice I had not hear in while (and a full sentence) said "I want you to know how much you mean to me, I love you" This was intentional on his part and I have made that my new guide - to be intentional with our love. Loving your blogs!

I am a survivor of my last TBI, which was 8 years ago. I want to tell you that your son is very luck, to have great caretakers. Myself, I had 5, prior. Myself, I was,45. I had two sons, with issues. But I had no caretaker. I learned everything all over, but it was by myself. With all the help that we really do need, and I mean that from the bottom of my hear, you are a great caregiver! I know how TBI survivors can be.

We each struggle with the particular result of our loved one’s brain injury. Because our son had anxiety and panic attacks before his car accident, he has paranoia and delusions after it. These 15 years have had many ups and downs. He has lived with us and in his own apartment a few times. Now he is at a psychiatric residence and we visit him frequently. I would pick the TBI over the mental illness every time. When one has both, it makes for a very difficult life for the survivor and every one who cares about him.

It has been 9 1/2 years since a motorcycle accident took the man I was married to and left me with the shell of a man I don't know. Isolation is the thing that people don't understand. We were a very social couple, but that is all gone. People stopped coming and asking after a while, not that there is much to report. At first I used to take him out a little....to eat, socialize, even motorcycle meetings, but he doesn't know anyone anymore and they don't know what to say to him. Besides, so many of the things that happen with him are just to much to deal with inpublic, so we just stay home. The actual physical caretaking is hard to endure....some of the things you have to do are things no one should have to do, but we do them. And I can't get mad because he can't help it. My daughter and her family have to live with us to help care for him....I still work so she has put her life on hold to help with him. The ripple effect of the lives changed by the few seconds it took the accident to happen is endless. It just goes on and on. God bless everyone dealing with a TBI.

It sounds like things are really heavy and hard for you all. I am so sorry.

The same thing has happened to us just 3 weeks ago. My fiance' was involved in a motorcycle accident on the interstate. He's always refused to wear a helmet. He hit the back of a truck which stopped in the middle of the interstate because an ambulance was coming behind them (idiot), so Troy hit the back of him doing about 65 mph. His g=face and head took all the impact. He has TBI. So this is all new to me and we are trying to just figure it out as we go. In the beginning he was in a coma for 3 days, they had no idea when he would wake up, if he'd know who we were or who he was for that matter. When he woke up on the 3rd day, we were ecstatic that he knew who we were. One battle won! I had no idea how many more there would be through just the next few days/weeks. I am on day 23 today. He is still in the hospital waiting to be transferred to a rehab in Pensacola, Florida. We don't know for how long as no one can make a guess on that.
I loved your take on the "guilty caregiver". There have been days where we as his caregivers feel guilty because he rarely sleeps so we end up with very little sleep on most nights-if any and then have to go to work for an 8 hour shift. Therefore, we are irritable and just exhausted! Some days I can barely put one foot in front of the other (like today). I want to run out of the hospital when its my time to be relieved by his sister. We usually do 1 night each so only 1 of us is having to be up all night.
He has reached the mean nasty stage now so we are dealing with that. Some of the things he does, especially in front of people, can be totally embarrassing! It is a very hard job to do especially when you don't know what the outcome is going to be. He will be going to the rehab in 10 days so we are hoping for a few more miracles. He cannot sit, stand or walk on his own, but he can speak just not very good yet. Sometimes we can understand him and sometimes we can't, which then frustrates him and then he's mad at us....we go through that day in and day out.
Its very difficult to watch someone you love so much and not know for certain that they will come back.... but I have my fingers crossed!
Thank you for sharing your story. Hopefully soon I'll be sharing my happy ending.

it's been 6 months since my mom suffered her fall/accident and every word read hear is extremely saddening and comforting at the same time. to hear exactly what I'm going through, the pain, guilt, anger, exhaustion, uncertainty, the rainbow of emotions. Thank you all for sharing.

My sons were in an accident may 21 2013. Chayse my oldest was driving and suffered a TBI. My youngest was a passenger and lost a tooth but suffered survivor guilt. It has been a long road. Chayse can now walk talk and eat which wasn’t expected but now suffers from moods. I am a nurse and can fix physically but psychologically I don’t have a clue. Everyday is a mixed bag. My sons relationship has changed with his brother as has all of ours. I feel exhausted always trying to diffuse a situation before it gets out of hand. My husband and I are a team and both bring support in different ways. He takes him to the gym everyday. I am in charge of health and connecting with community. Our lives have changes forever.

Cheryl, I feel the ache of your words. And as the mother of sons, I sense what you are saying. This TBI really changes EVERYTHING...Today I am sending you love. A wish for some peace and good hope and also saying, THANK YOU for sharing this with us. And with me. ----- Warmly, Nicole

Yes, Nicole, as your good friend said, "accidents happen". But knowing that doesn't take away the aftermath of feelings we sometimes find ourselves dealing with: resentment, grief, frustration, self-pity, anger, hopelessness, sorrow. My husband had no control over his accident (rear ended while stopped by a young driver at 50mph. This his second brain injury.) and there should be no judgment by anyone who thinks your situation is different because you (sometimes) may feel your son's choices that night "caused" this outcome. It's not a choice any one of us would ever make! So, because I'm one of those who "get it", I just want to say Ditto to all you've shared here. Thank you for doing that, Nicole. Blessings to you and your family.

Regina, from my hurting heart to your beautiful heart...thank you. I really needed your words today. Telling the truth is hard. I cried as I read your compassionate response. Thank you so much for taking time to share and respond. ------ With gratitude, Nicole

This is the first time I’ve ran onto your blog...for me it is my husband...22 years of TBI...everything you say...I so relate...he can go from a happy go lucky guy to an angered monster in the snap of a finger...as I still struggle daily to walk away an think that’s not the man I married 47 years ago...but it is the man I’ve had the last 22...it never gets better...you just go on...no one really understands...stay strong...you are an amazing lady...I will be following you now❤️
VLW

Vicky, I am honored that my truth allowed you to share some of your truth in return. I felt your words, and I hear them. Love love love coming back to you...Nicole

Thanks for this Nicole...I relate completely. I became the caregiver for my brother about two years ago when our mother, who had been his caregiver, passed away. Surely not how my husband and I would spend our golden years. We pray daily for strength and guidance. Blessings to you and yours!

Wow. Thank you for sharing this...something I often ponder, "What is next?" Your brother is fortunate to have you, but I know it is not an easy road. With love, Nicole

I'm new to TBI caregiving, as my son's accident was merely 3 months ago. He was the victim of a hit-and-run. Reading this helped me in more ways than I can express. I'm not alone. My thoughts, fears and emotional rollercoasters are typical, maybe even normal. There is hope. Thank you.

Yes, there is hope. I am so sorry about your son Amanda. Much love...and know that you are not alone. - Nicole

Hi,
I understand everything you said. Unfortunately. .....I would add my comment about the guilt and reality of neglecting my other son. It's 26 years post TBI for me. And I say for me , because the.motorcycle wreck that ended one type of life and began another life in an instant for my son at age 20 , did no less for me. I used to try to explain his behavior and all that goes with that , to those we encountered along the way. I stopped that years ago. Took too much of my valuable energy and it was useless anyway. Thank you for telling part of your story. There is real comfort in knowing someone understands. I wouldn't wish this on anyone of course , but I am glad. to know there are Moms like me , who get it without the need of any explanation .
God be with you & your dear Son
Brian's Mom

Debbie, So beautifully and achingly said. Thank you for sharing. Your words felt like a hug from a friend. Warm. Real. And comforting. They also felt very honest. With love and peace towards you and Brian. - Nicole

Thank you for writing what I haven’t been able to put in to words.

Jenna, thank you for opening your heart to hear and hopefully heal. With love, Nicole

Thank you for sharing this. Everything you expressed, I have felt. My daughter was in a terrible atv accident due to being intoxicated. The past 15 months have been a whirlwind. Until you become a caregiver I don't think people (I didn't before this) understand the commitment and patience it takes to care for a loved one. Sending a hug and prayers for you and your family.

Heather, I am so sorry. Each word you wrote is powerful and true. Please know you are not alone. Love, Nicole

Ten years post my TBI that occurred in late adulthood, I recall all of the dark emotions. Having parents that understand is a blessing for your child. GG

Celebrating you and your recognition of your parents. With love, Nicole

Nicole, thank you for this written word of truth and real life. You are so courageous and most definitely , through your honesty, help others. I always loved this about your Mother too - her honesty ❤️Love to you ❤️