The Agonizing Truth About Brain Injuries

Dear Diary,

I’m ready to take a step back, to take time to contemplate, to reflect and to finally tell the truth.

I’m finally ready to put down my book, which has been all too consuming. To discretely slam or just close the pages, consciously smothering the content. Purposely, shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Yes, my son was one of the lucky ones. He survived.

But at what costs?

Over the years, I have read many, many books about brain injury, most trying to impart a positive twist to its horrors. And, even in the midst of my own chaos, I surprised myself by writing my own memoir which a publisher actually printed. Like other authors, I tried to write to give hope to others, which at the time was my intent. But my intention now is to write a final chapter without an audience in mind. With no anticipation that anyone will read it so that I can give myself permission to just write sincerely with no expectations to always have to be the strong one or to always have to be the one to try to see and share the silver lining amidst the tragedies.

I want to be unguarded. Truthful. Real.

There is no silver lining.

Yes, in my memoir, I wrote about my son Paul’s miraculous recovery from a traumatic brain injury. Do not get me wrong, it is an amazing story and he is an incredible being and will always be my hero. But in my book, I only wrote about his first year of recovery and there have been many, many more years. And there have been other thoughts and real struggles that have never put down on paper.

Most people, publishers, and readers only want to hear the “happy ending” parts to a survivor’s story, grasping for some kind of hope that their loved one could possibly — with determination and perseverance — conquer, too. So that is what I wrote about, partly because I needed that glimmer of hope myself. It has been almost five years since my books have been published, 15 years since Paul’s bike and the SUV collided. Did I really just type “collided”? I need to edit that to read: smashed, shattered, and crashed into our lives, changing everything forever. Wait, I need to also scratch out everything because I just looked in the dictionary and it say’s “everything” means the whole thing. Obviously, Paul is not a thing, but brain injury has changed the core of who he is and was and what his future could have been. The impact from brain trauma has altered Paul and tainted our entire family, derailing the “happily living after” course we had been on.

People often ask me if it was therapeutic for me to write about our family’s TBI“journey.” I usually answer with my standard comment, “Yes, very healing!”  And again, I usually promptly answer when others asked, “How are you, Paul, and your family?” and without hesitation I respond, “Fine thank you and you?”

I lie, often.

The reality of reliving, writing, editing and bringing visualizations and memories to life and ink to paper has depleted my spirit. And man, what about all the caregiving and caregiving and caregiving? Caregiving is exhausting! We have had to readjust to Paul’s needs as his situation has changed, which it has many times. There was the immediate aftermath of injury in the intensive care unit, the coma, the uncertainty of life and death. Then later, in the hospital, trying to grasp all that was happening, then the prolonged stay in a rehab setting not knowing if our son would ever walk or talk again. And then there was his return home when the list became even longer while monitoring his changing physical and emotional needs, cognitive issues and strategies, safety concerns, meal planning and preparation, medications, possible seizures, bathing, dressing, and personal care, structuring and planning activities, transporting to and from therapies, dealing with adaptive equipment, moods and more and more and more. The caregiving continued with his e-v-e-n-t-u-a-l reintegration back into the community and school trying to set up a special program to meet all his needs and later attending an unusual higher education program that would focus also on life skills and then working with so many organizations to help him find possible opportunities for employment. And the long-term issues of constantly advocating and advocating and advocating, seeking out possible resources for Paul and our family. And the finances, and especially all the paperwork and legal and insurance issues. And as anyone who is the midst of brain injury knows, the list is endless — and that’s only the list for taking care of the injured person. What about taking care of other family members or siblings and their activities? What about the emotional needs? What about the basics of daily living such as shopping, cooking, laundry, childcare, house work and yard work? And what about me? What about my needs and comforts, my job, my friends, my marriage, my emotional and physical well being?

Well, the reality is, I have written books, articles, and speeches. I have given presentations trying to bring awareness to this devastating injury, trying to put that optimistic twist to every piece that I write, every presentation that I give. But in doing so, I have stifled real thoughts, real emotions, and I have kept my secrets to myself.

At times, I have become isolated from others, so it can be awkward when I feel entrapped by friends or acquaintances as they sometimes persist on asking curious questions, when all the while I’m secretly thinking that they could never, ever, ever possibly understand the magnitude of the real answers. Besides, they just think I’m nuts anyway for having eight children. Yes, eight. (Maybe I am crazy?) But today I’m ready to take a step back, to take a moment to contemplate, to reflect and to finally tell the truth. It’s time for me to not sugarcoat brain injuries, to not pretend that this whole experience has not unhinged me or my husband and our children. How I wish that I could write or talk about something else, maybe a mystery novel or a love story or a comedy. I have not really laughed for a long, long time despite all the small and big victories we have fought for. The numbness that comes with trauma coats everything.

So, here is the truth about brain injury from a mother’s point of view, my point of view.

People often ask how am I. I’m tired! Really, really tired. And like other TBI caregivers, I never thought I would ever end up in an ICU, or rehabilitation hospital, or have the need to attend a brain injury conference, let alone be a caregiver for my son Paul who sustained his injury almost 15 years ago, when a car struck him while he was riding his bike — without a helmet.

I’m also neurotic! Now, whenever I see a kid without a helmet on, I scream out my car window, “Wear a helmet, you idiot!” which usually sends the kid tumbling. Anyway… how am I? I guess I’m mad sometimes that Paul was not wearing a helmet and for bringing traumatic brain injury into our lives. I guess at times I also feel guilty. I feel guilty for feeling mad, guilty for not being able to protect my son, guilty that I can’t change what has happened, guilty that I miss our previous way of life when my children’s biggest concern for the day used to be whether they were going to play on a swing or eat a peanut butter sandwich. Guilty that I cannot help them or be fully present. Guilty that I don’t have time for myself and my friends, and I’m worried that my husband and I talk and have sex so infrequently; we have become distant, like strangers.

I guess if you ask me how I am, I could say I’m often preoccupied, stressed, and depressed. I could say that I had absolutely no idea when I took my wedding vows years and years ago that my husband and I would really have to live out the “better or worse part,” let alone think that we would have ever had eight children! If anyone had ever truly told me about the teenage years or that I’d be dealing with traumatic brain injury, I would have run from that alter in a heartbeat. But the reality is that my children are everything to me and I fear for their safety and their emotional, physical, spiritual, and mental well-being. I miss our family’s carefree days. I miss having fun. I’m also burdened by domestic chores — cleaning, carpooling, cooking. Boy, do I hate to cook, and the kids always know when the oven is on because the smoke alarm is usually blaring. And I hate that Paul had a brain injury! I get sad, really sad and grief-stricken sometimes to have had to mourn the loss of what could have been. I hate all the medical appointments and therapies, and that Paul has had to struggle so much, and that our family has had to endure an abundance of heartache. My heart hurts, and most days my mind does, too. I cannot comprehend all we have been through, all the changes. I cannot understand why some friends and extended family members have not educated themselves about TBI and distanced themselves from us.

How am I? I’m often confused by all the medical words, equipment, procedures, and often the lack of communication between us lay people and the professionals. I’m dumbfounded that I feel like I’m reinventing the wheel day after day to try to find help and resources for my son and my family. How am I? How am I really? At times, very lonely; caregiving can be isolating, demanding, never ending and really, really hard. Sometimes, I have a big pity party for myself. It’s usually while driving in my car when I’m alone. Sometimes I scream at the top of my lungs, “Why did this happen, why Paul, why our son, why our family?” and usually this feels really good, except when I’m stuck at a red light and I realize that I have forgotten to put my windows up. How am I? Numb. Some days I don’t want to get out of bed to face the day, to face the reality that traumatic brain injury happened to me, to my son, to our family.

I would be lying if I told anyone that I have never thought about buying a one-way ticket to Hawaii. I would be lying if I mentioned that we have lived through our son’s brain injury without any scars or battle wounds. And I would be lying if I admitted that I love all the endless caregiving.

I lie a lot. I write books, articles, and speeches, and I frequently encounter people in the brain injury world at conferences and hear of their struggles and accomplishments and the many, many “miracles” like Paul’s recovery. But mostly, I am suffocated with the sadness, the grief, and the hopelessness that these families and survivors have to try to cope with. It reminds me that I’m one of them. Yet I’m supposed to be the pillar, the expert, the one who has all the answers.

I have no answers. There are none.

There is no silver lining to brain injuries. Brain injury does not go away. And can I say that I also hate the word “plateau”? I hate all the clichés I have heard over the years and even at times have repeated: Time heals all wounds. You’ve come so far. You’re son/daughter is such a miracle/blessing. Your family is so amazing and an inspiration to us all. You’re so strong. Good always comes out of bad. There are lessons to be learned through every experience. God works in mysterious ways. You’re so lucky your son is verbal or ambulatory or does not look any different. Your marriage and family must be so strong to have survived the unthinkable!

I’m finally ready to put my book down and to stop writing, at least for now. I’m ready to discreetly slam, or just close the pages, consciously smothering the content and clichés, purposely shutting out all the noise, the battering, the heartache, the horror, the never ending memories and the trauma of living with brain injury.

Our son who is now 26 has moved out of our “one-horse town” and our old colonial home to reside in the big city. Despite lasting repercussions and deficits from his crash, it is now time for Paul to revel in all his hard work and write the next chapter to his own life.

And it is time for me to begin to give myself permission to heal and to live.

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