It's Okay Not to Be Okay

It's Okay Not to be Okay

Recently, while going through my nightly routine, I was startled by the reflection in the mirror. Yes, it was my reflection, but not the carefree southern girl I used to recognize. I immediately started laughing and crying simultaneously. I laughed because my own reflection startled me, and cried because I didn’t recognize myself. Sadly, my image could not be blamed on a mid-life crisis or hormones or failing to use anti-aging products. Any of these reasons would be a welcome culprit compared to the true robber of my identity.

Up until the night of the auto accident that caused the death of our son Aaron and left Steven with a TBI, both my husband and I held professional titles. Most importantly, we were honored to hold the most prestigious title of being Mom and Dad to Aaron and Steven.

A knock on our door with news of a car crash not only stripped me of my titles and identity, but it also left me with a broken heart. One-half of my heart left this earth with Aaron as he drew his last breath. Even while beating frantically out of rhythm, the other half kept beating with a purpose to lend strength to our son Steven as he lay in the ICU fighting for his next breath.

Four years later, as some of the dismal fog lifts, I can see that out of fear of letting anyone down, there have been many times that I’d proudly adorned the “I’m fine” mask. The mask is not health, and it can mislead family and friends into thinking that I’m the same person they knew before August 13, 2012. The truth is, there is no way to be the same Mom, wife, daughter, sister, aunt, friend or anything after every fiber of your being has suffered radical rewiring.

My mask is tattered and torn; it’s long overdue for retirement. In retrospect, it was an unrealistic expectation I placed upon myself that I needed to be the same Norma I always was for the people in my life. I wanted to be the same. No mother willingly signs up to trade her normal life for a life of caregiving, TBI, advocacy for her son’s needs, and being that Mom that no one knows what to say to because she lost her first born son.

The fear of letting others down is self-inflicted. I became so obsessed in ensuring that Steven’s every need was met that I not only lost sight of myself, I lost sight of the fact that others need me now. They need me to say, “I’m not okay!” They need me to show up vs. playing the “I’m too busy” caregiver card, when the truth is: yes, I am busy, but at times the avoidance game is more appealing than finding the strength to talk about my reality while everyone else is moving on with their life. I know that my family, friends, and community will accept me for better or for worse; but I can’t always accept myself!

If I were to attempt to describe all the ways double trauma has changed me, I would run out of blog space, so I will focus on one instrumental way my perception has changed. My husband has lovingly adorned me with the title of being a “Noticer.” Yes, even noticing and stopping to take a picture of a random, broken, upside down, but still standing headstone adorning none other than my last name. We stumbled on it, and it hit hard. Ironic, I know! For some, this incident is too morbid to mention, but to me, all I could think was how many times I felt like this headstone inside. Broken over not seeing plans and dreams for me, my husband, and my sons come true. Upside down from the roller coaster ride of double grief; earthly separation from Aaron coupled with ambiguous loss. Still standing, but not steady. The headstone left me thinking about that old jingle: Weebles Wobble, but they don’t fall down. That’s the Myers family!

Recently, someone shared these bold words with me: “Do not miss those you have because of those you miss. Do not miss someone so much that you miss the people in front of you. Upon receipt, the words penetrated my heart in an unpleasant way. I felt angry, angry because without intentionally doing so I know I have missed and been missed.Raw tears are streaming as I type and feel those true but painful words. The heartache I feel from the earthly separation of Aaron is unbearable, but I know that he would not want me to miss our faithful family and friends that remain right in front of us. It doesn't take away from how much I miss him; nothing could do that, but if I allow myself not to miss those in front of me I will gain a reservoir of strength to tap into when my own is depleted. Trust me when I say my genuine desire is to not only physically show up, but emotionally, genuinely and vulnerably show up—even when I don’t feel like it! I’m thankful for those in my life that have not given up on me, even at times when I have given up on myself.

It’s both frightening and freeing to be mask free. This journey is not for the faint of heart. TBI sucks for the survivor and the family. The loss of a child is not natural; it is unacceptable. I have learned many life lessons along our journey; some I prefer to embrace, and others I prefer to ignore. Above all, at this pivotal moment, I’m thankful for the healthy lessons that at first I ignored, but now I embrace. It’s imperative to let go of unrealistic, self-inflicted expectations, and it is okay not to be okay.It’s not a sign of weakness to admit this, in all actuality, I realize it’s a sign of bravery to say, “Please be patient with me. I need you. I can’t do this alone.

Posted on BrainLine October 11, 2016.

Comments (11)

I love your terminology "radical rewiring", because now I have a name for what I have, as a Mom and caregiver who has an adult son with a severe TBI. Others see that he has gotten better over the past two years, while I seem to be stuck in trauma mode. As friends no longer help or call, I grieve a lot for the way he was and try to process in my own head, how he thinks and what can I do to help him every step of the day mentally and physically. I appreciate hearing from other Moms of adult children who have severe TBI and how they cope with this unfathomable loss and grief. Thank you for sharing your story.
Thank goodness for those brave enough to write blogs and articles on the caregiver aspect of having a Traumatic Brain injured and hemiplegic child. After 7+ years, friends and family do not ask how Ian is doing anymore. They don't visit him. I feel like I'm stranded on an island until I get a glimpse that someone understands. It's hard and tough decisions need to be made now and again. I am his legal guardian and the decisions are always up to me. My life and Ian's life have been changed forever. Thank goodness someone else knows that it's ok not to be ok.
Sweet Norma, your words are making a difference and having an impact. Thank you for being open, honest and vulnerable while you continue to grieve. You are a beautiful soul.
It's unfortunately fortunate to have stumbled across everyones thoughts- because in 4+ years I've not commented to anyone else who lives/cares for an adult child recovering from a severe TBI. I get the sense the emotional pain is never going to end for our family and especially my son. People without first-hand TBI experience don't get it- much less believe the sad lonely existence for the person after an injury. Outsiders (not immediate family/relatives) have been mostly unkind. Although most of the time he seems cognitively all there, small things lead to anger, and awful name calling. There are even sporadic physical encounters at home because he's been pushed outside his ability to process. I get your tears, I have my own, more often now than 4 years ago; I'm tired and there is no help. It sounds like I'm trying to be a victim, I'm sorry, it just seems like our reality. You're right though and I agree- it's ok, not to be ok- unless, of course, someone is watching, then it's downright embarrassing or in his case apparently illegal. He had so much overall improvement and there will be more, it's just so slow; I wish others had the patience, understanding and knowledge needed to let him continue to recover rather than court order him into a state run mental (health) hospital, to first make him "more competent" and then send him to prison for a non-violent, non-monetary computer mistake that carries a mandatory minimum 3 year sentence. All of this hanging over his head causes more outbursts and less forward progress - no kidding. He did receive a small settlement after being hit by a 2000# vehicle, driven by someone just under the legal limit, as he crossed the street. Karma now has him using part of the settlement for legal fees -so far $10,000 - for his supposed defense- but even with a defense, he's still court-ordered into a state run mental hospital. We're scared to death at the prospect of this. He can't work and has been denied SSI. Hasn't he suffered enough? Thanks for the space. I don't feel better, but there's probably more of us out there.
Love you. Reading this makes me know you will be alright.
This is beautiful and real and healing.
My biggest fears are your reality, and even though we don't know each other very well, my heart is with you. Partly, we desire to show the world and our friends how comforting and sustaining our Heavenly Father is, but somehow in our attempt, we put that mask on. No words can express the depth of sorrow, loss, anger, despair, and at times, I hope, moments of wonder, comfort, reassurance. You are sharing the truth. Thank you, for your honesty. Teresa, former band wife
Powerful. I can not even imagine what you all feel. All I know to do his hold you up in prayer and be available if you need me. Carl G.
This was transformational and I thank you for your transparency. Wow - I can't imagine. And after reading this I am going to work hard at missing and mourning the daughter that I had before the accident so I don't miss this new one that has presented herself differently after surviving frontal lobe injury. Not quite the same intent of the quote but perfectly applicable.

I'm into my 3rd year of this hell....A police officer hurt my husband over a noise complaint......I can't win...I actually let him leave today to drive to Pocatello to see the eclipse. Another one of his (money spending spree hells)...which he has no concept of. I feel like his Mother not his Wife...I'm not sure if I can live through this....

I'm sorry for what you are going through. Please don't give up! Reach out to your local support group and keep reaching out to others here on Brainline. My email is norma_myers@hotmail.com. Wishing you blessings and peace!