Turns out, of all the grief offenders, I might be the biggest offender of all. You see, I’m a person who detests platitudes. When my husband suffered a catastrophic brain injury at age 29, I rarely appreciated being told that God had a plan for us and that He wouldn’t give us more than we could handle (within 18 months, I’d been tasked to “handle” a rare caregiving docket in the form of TBI, my mother’s cancer, and my dad’s death).
By the end, I no longer believed in the natural order of things or the idea that our collective suffering had been divinely ordained. I certainly didn’t want to be coached to keep my eye on the prize or to search for those silver linings. I wanted to cry out in pain and to sit in it for a moment. I wanted my grief to be validated by others’ acknowledgement of it, and I didn’t want to pretend that today’s suffering might be tomorrow’s victory. I simply wanted it to be what it was: hard. And I wanted that to be OK with everyone else too.
Over the years, I’ve spewed a lot of criticism for the ways people bear witness to grief. I’ve pointed out the ways they’re doing it wrong—the ways in which they make it worse for the hurting. But a recent experience has me beginning to see that I’m guilty of doing the same thing: of trying to comfort myself with the same promising platitudes.
A year after my husband’s TBI, I began writing a book. More than four years later I’m finally preparing to put it out there in the world. But it’s a project that has consumed me; one I’ve developed uncharacteristic anxiety around. Will it be good? Will people read it? Will my writing do justice to the hardest experience of my life?
I’ve spent more time fretting about this project than just about anything in my life. And the other day I was struck with an epiphanal tidal wave. It stopped me in my tracks. This book is my silver lining. I tried to unpack that for a minute: what had I been telling myself about this book that allowed me to get so completely attached to a single outcome? After all, a book does not define me. Neither my roles nor my abilities define who I am at my core. On the surface, I am a writer, a teacher, a mom, and about a hundred other things. But I know from watching my husband instantly lose and mourn the things he once thought defined him that it’s dangerous to attach our self-worth to anything other than our character.
So why, I wondered, was it so important for me to find success with this one endeavor? Maybe it’s because I’ve poured my every spare minute into writing this book. Maybe it’s because I’ve written such a deeply personal story. Or maybe, in my unexpected journey to authordom, I’d been telling myself a different story: that if I could write this book, if I could conjure up something beautiful from the wreckage of our lives, that maybe in some small way, the terrible pain we’ve lived through would be worth it.
I’d never entertained this idea before. Had I, in writing this book, been trying to sell myself my own silver lining? Had I convinced myself that I needed some measure of success to justify or salvage my life?
The human desire to make lemonade out of lemons is only natural. Some of my most beloved friends are those who have persisted in reinventing themselves after a tragedy. These people are activists and writers and speakers and more. They are using their pain to offer healing to others, and I respect them immensely for telling their stories.
I’ve long wanted to consider myself one of these lemonade-making people, but now I see that the path to reinvention also means understanding your intentions for traveling on it. No book will give me my life back, nor restore my husband to the way he was. No public accomplishment adds value to my worth. I was – and always have been – a person of value. Tragedy does not diminish nor add to that fact.
Continuing one’s life after traumatic brain injury is not always a glamorous or celebrated journey. For most people, it is a quiet path, traveled imperfectly. The pain does not come with big payoff, nor should we seek balloons and fanfare to celebrate our survival. There doesn’t have to be a silver lining to make this life worthwhile. The joy of it, the reward, is simply getting another chance to put one foot in front of the other and keep marching forward.
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.
David Bruce replied on Permalink
The Preface about Your Book in this article is the first thing i read this morning. I do not know quite yet, without reading Your book, the extent of Your Husbands injury nor the effect on Your Lives, but i can attest that Your Husband, deep down inside, is feeling the exact words You have put in writing this. As a TBI Survivor, All we Want is for people to understand the Hard Part eventhough we may look perfectly normal. I look forward to reading Your book, I'm sure it will help me continue to understand my own Value without a Silver Lining. Bless You for Your Efforts Education Others by Expressing Your Situation.
danielle replied on Permalink
My story is a bit different - I am tired of hearing negative things about my brother, who fell and has a traumatic brain injury and is still in the hospital, one year later!! These come from doctors and some nurses, and even family! which is the worst of all.
DL replied on Permalink
I am a caregiver for my 53-year-old husband in his 3rd year battling ALS. Terminal. No hope for survival. Just one terrible day after the next while he loses everything he had and everything he would ever have. In the 2 seconds, it took the doctor to utter the letters ALS our future was pulled out from under us. It was not to be. He would die, but not until he suffered immensely as I watched the entire nightmare unfold, and then I would have to carry on alone.
I remember the doctor saying “I’m sorry. It’s incurable and we have nothing to stop its progression or to prolong your life unless at the end you decide to have a trach which I don’t recommend. You have 2-5 years at most. "Get your affairs in order.”
There are no words to describe what being a caregiver for the love of your life as they suffer and die is like. When people tell me there’s is a higher plan I tell them to shut up. It’s empty and hollow. I have several great friends who get it because they have been caregivers themselves. The others I have mostly cut loose.
I have no energy left for lunches with girlfriends who complain about their boss or the trials of their marriage, or their fat thighs. Really? It is all so nothing compared to what my husband and I face every day. I have zero energy and less than zero empathy for their insignificant issues.
I work full time and he is my second full-time job. At the end of this journey, I will know I did everything I could and the friends who got it will remain in my circle. It sounds harsh, but my life is harsh.
I commend every single person who is caregiving for a loved one. It is the hardest job there is. It robs you of the person you were, the life you had, and the life you thought you would have in the future. It leaves you raw and damaged. Like you have been through a war. You are fighting a war you know you will lose in the end and yet you still fight. Intellectually I know I will be okay eventually, but I will never, ever be the person I was. That person is gone forever.
Peggy replied on Permalink
I am so sorry. ALS is tragic. No other way to describe it.
KC replied on Permalink
I understand all you have said. My dad has a TBI, his "accident" occurred 9-29-2015. I say "accident" because we really don't know what happened to him. My mom found him in the driveway when she came home from work. He was 70 years old and had just retired almost two months to the day. My parents had big plans for retirement, every one of those was gone in a second. We as a family chose not to leave him in a nursing home but to care for him at home as difficult as that would be. Mom cares for him 24/7, and we four children and several grandchildren try to fill in as much as possible, as she cannot do it alone. We have shifts for helping out. A calendar with who will be there daily during the week and weekends. As much as we are there, Mom is still alone much of the time. Yes friends have gone and don't bother, you may get an occasional "how is he." Mom has changed in so many ways and not for the good. But we all understand. This injury not only changed Dad, but changed us all.
Scott replied on Permalink
I have enjoyed your blog so much since I found it while my 29-year-old daughter was going through initial rehab in Atlanta after a life-changing stroke in February of 2016.
Your confessions of the caregiver helped me relate that those of us whose lives have been changed by our revised role in life that includes caregiving do have worth and I think those "silver linings" are simply a byproduct of helping others find their way after some pretty challenging changes including a "life interrupted."
I too am writing a book and sharing one's deepest hardest emotions is difficult. But to me, it is the sharing of common experience that benefits others whose station in life is now is similar to ours.
My hope is that these shared experiences provide value to those already on this journey as well as those who are just beginning it. It is a difficult road we travel. Thank you for being willing to share because it has provided our family hope and sanity through work that I never planned for at this stage in life.
Wendy replied on Permalink
I just wanted to say that all the things I just read are accurate and normal. I suffered a TBI at the age of 18 and have never been the same. Anger, resentment, etc... Silver linings for me have been great friends, two wonderful kids, and every new sunrise. God did not cause or condone my injury, but He has given me ways to enjoy life anyway and not stay angry. Sometimes the pain and anger return, but I realize that I am blessed just to be here watching my kids grow up. I enjoy every day and try not to think about what “could have been”. I hope that you and your husband find happiness and joy. What I read was certainly a successful representation, so be proud of the finished product :)
Carine replied on Permalink
Yeah, such a resemblance with what I have been putting up with.
I just can't handle with people telling "there's something great waiting for you guys", as you said, it just is so extremely hard and that's it. Nobody can understand that.
You see and you can even touch the one you love, the one you chose to love, everyday... but no, it's just not them anymore. I will simply never see him again, everyday, even though I see him everyday.
And that's hard, that's mourning in life, for as long as it take.
Renee Morris replied on Permalink
I needed to read this. I cannot thank you enough for your insight here. Seven years post Severe TBI and I don't feel the worth I once did in life. I am no longer validated by a profession due to my disability. The loss of 90% of my old friendships has left me feeling less value as a human being. I needed to read that these things do not lessen who I am at the core. I still have value even though I am no longer capable to do the things I once was or to even act the same human I remember.
Mary replied on Permalink
Please try HBOT for your husband. I can attest that it does indeed work to help your brain heal. HBOT.com is my HBOT physician’s website. And seriously try it before you let others keep you from it. It works.
Mack replied on Permalink
What is hbot and how do I try it? I am 5 years post brain injury. Is it too late?
ChristopherJay replied on Permalink
I deeply appreciated and enjoyed reading your post. I wish you well with your book; as I know what it is to be an author through my former amazing partner, as much as a tbi survivor that sees what my wife and children are enduring. Christopher Jay - grateful for all caregivers, for without them, there would be far fewer survivors, if only this one.
Lori Crosby replied on Permalink
I have got to read your book .. I too am a caregiver that hates all the Sunshine Lollipop Stories ...
I want to learn to deal with what I have not it's Gods Plan