What TBI Teaches Us About Endings

What TBI Teaches Us About Endings

Until I was forty-six years old, I believed that I was a part of my husband, and he was a part of me; that we would always be together no matter what, and that I would never be alone — and so it was a revelation when I realized that I’d always been alone and always will be.

I learned this lesson on April 13, 2002, as I watched my husband lie on a gurney near death, and there was nothing I could do but hold his hand and beg him to hold on. He had to struggle while I could only stand by.

He was alone.
I was alone.

At first, this revelation felt alien and horrifying to me. I always believed we were sharing our life journey, but that day our lives diverged. I realized I could only hold his hand and whisper words of encouragement. I could try to connect, but I could not go where he was. There are some things we simply cannot change. We are born alone, we make our own choices, and we die alone.

Through twenty-four years of marriage, I believed we had a connection that nothing could sever, and then his brain injury separated him from our past.

“Remember the song we always sang to the girls when we bounced them on the bed?” I asked Hugh just recently.

“No. What song?” he said.

“The silly one my sister recorded as a gag for us. Remember?” He did not.

Thirteen years after his TBI, I’m still learning about the memories that have been wiped out of my husband’s psyche. It’s a source of endless fascination and misery to me — the things he remembers and the things he has forgotten. But does this matter? I’ve only begun to explore this question.

The first few years following Hugh’s injury, I didn’t quite know how to exist as one-half of the new couple we had become with my vivid memories and his loss of memory of the way we were. But as he began to heal, and as I saw glimpses of the man I knew before, I felt hopeful. Eventually, the past and the present melded together, and we once again formed a new intimate connection — a satisfying relationship in which we incorporate different images and impacts from our past.

More recently, I have been transformed by the knowledge that we are all ultimately alone, and it finally feels okay. I can stand alone. In fact, I am more capable than I knew; I am stronger than I realized; and I’ve learned a great deal about myself by being forced to dig deeper into the inevitable mortality we all face.

Albert Einstein said, “Few are those who see with their own eyes and feel with their own hearts.” TBI gave me clear eyes and a sense of heart-strong urgency in my life — an urgency not shaped by what others have told me but by my personal experience. An urgency to do the work I love; not to own more, but to give more away and live simply; and not to try to belong to my husband, but to get along with him.

Clarity and strength are the gifts of owning ourselves completely, and from there, we can stretch out our hand to others.

The ancient wisdom of the Tao Te Ching says:

Attain the ultimate emptiness.
Hold on to the truest tranquility.

Each of us will one day be the one on the gurney, or the bed, or in the crashing car that ends our life. How will it feel to be alone as we pass away, even while loved ones stand by? Did we attempt to tap into the tranquility we would need in those final moments on earth to pass peacefully? No one can give us tranquility; we must summon it up from the whole of our experience. Is it possible to prepare yourself for a peaceful death by “holding on to the truest tranquility?”

Christopher Pike in Phantom wrote: “Krishna was once asked what was the most miraculous thing in all creation, and he replied, ‘That a man should wake each morning and believe deep in his heart that he will live forever, even though he knows that he is doomed.’”

I wish I could believe I’d live forever. TBI has taught me the opposite, so I’ll opt for living authentically. I’ll believe in the power of love to connect with others. I’ll appreciate the full experience of my life, imperfect as it is. I’ll use all my talents for as long as I can, and I’ll embrace the beauty in this world so I can leave in peace in the end.

Comments

Rosemary,

Alone, so beautifully put into words... TBI brought the full impact of the responsibility of life upon thee... and the ultimate loneliness that life begets. You have observed and felt TBI from one post, that of the caregiver for a spouse an I have experienced, first hand, the audacity of the effects of a TBI. Both experiences are extremely difficult. One makes you feel powerless an the other is a similar in nature. Both are vehicles for "Observing From Afar." I threw together writings done through the years into a folder and titled it as such, "Observing From Afar." I didn't even read anything put into the folder. A conglomeration of time, feeling, and the experience of life, viewed from afar, so it seems... it really does an I don't mind it at all.... the physiatrist I saw from day one labeled me "manic depressive" from the get-go. Such was the halo, dagger, take your pick, I carried with me for all of these thirty-five plus years. I don't mind... it is what it is an it sure isn't something you want in your life, initially. As time went on, I grew to kind of like the label. Right on the money, actually. She, the doctor, was viewing from afar and myself, same deal. It is an experience of pain, struggle, understanding beyond anything imagined, a light that will guide, and ultimately, satisfaction, an inner peace that turns one inward. Love is love in which humans seek. Love of thyself is the highest form of this expression of love. You understand this from one side, I from the other... yes, life can deal us some very cruel lessons, but if you look deep into the folds of the lesson, patience and the "just right" aspects of such will come shining through to you, only you. This is the sustenance of the human experience perforated through a traumatic experience which touches all connected to the person touched by the specter of "Traumatic Brain Injury." It can be good or bad, it is the perspective which assures that decision. You are a light who chose to deal with the calamity head on. Initially, stunned, you pushed on and reached higher ground. How high, it be unknown, as life gives no re-assurances. My Mother, Pauline, took the same stance as you have, God Bless Her Soul. Carry on, carry on, carry on, for the experience is all about LOVE, yes, LOVE...!!! No greater gift can be betrothed then expressions of love placed on your doorstep. Difficult for you, yes... but the future is bright because you have seen the light, and yes,  it isn't easy but it is all before thee!!!

Art

Rosemary,

I write again... aimless, no, searching for the right connection would be a better description then aimless. Nothing is "aimless, pointless," for everything one encounters in life has some form of meaning. TBI has trained this eye, after encountering a wizened old master of the hypnotic nature of the living. Never would I have encountered such a being without the incorporation of being severely struck on the head and surviving a collision with a train. It is written an it is willed, or something like that. You get my gist? We swirl in and swirl out, how we remain can only be told through the light of the day at that particular time... remain in tune with the living space in one's mind an it will be filled with the necessary accouterments to fill in the spaces lost until that time comes in which one feel's no longer in touch with the earthly belongings and space one has settled in. Eye's close an open no more. Run, run, run,... no, no, no. Or is it yes, yes, yes... it be what one FEELS. Yes, we go to where we are led by instincts. Understand, the "traumatic brain injury," sustained, was not a mistake. Destined were thee to receive such accreditation  to the body for it was meant to be because you were the chosen one, in a manner of speaking. To be affixed with such a potentially life altering problem. Life altering to say the least... a new road is discovered in time of recuperation, if approached in a zealous and "just right" manner... what may that approach be, one may ask. Wait, listen, an it will come to thee.... yes, it will come to thee... seemingly the writings of a kook, one may say. But, alas, read no more, for the imagination shall set you free, armed with the just right perspective. Like slicing through butter, in time, in time... for it is there to be realized and realized it shall be... for time is on our side!!! Perspective... !!! It be so

Art

Rosemary,

I write today about death. Preparation for such is what a TBI represents as a precursor, prelude, test run, checking all ramifications, or something like that. Your sensory system has been there, although, consciously, you may remain befuddled by turning in the pager for good. Unconsciously, all systems are prepared for the inevitable. All TBI sustainers have a leg up, so to speak, on the station of death. We have died while still living... a beautiful thing. Stillness is a TBI benefactor... quiet is always appreciated once your condition has begat the taste of friendliness. Yes, friendliness... it is what it is an it be "just right." It grows on you after such a long a time of dealing with the frustration, pain, and hopelessness, that is TBI. I write in such verse today because of the imminent passing of a brother.  Observing from afar... yes, truly it be the case!!! AC

Rosemary,

I read your article again. Paragraph beginning with "Albert Einstein" is so well done that it leaves me speechless, or in this case, writer less. Truly, as I've experienced on the other side of the equation, it was meant to be. You have accepted fate and turned it into something you could call one's life calling. Yes, you have found it or maybe, it found you. Either, or, balance has come about in this world of confusion. Simplification is understood. Has the world changed or has your perspective on its ever evolving, seemingly, downward plunge opened formerly closed mind/eye. It is inside, for everyone. The chance to absolve oneself of the hypnosis of the human experience is absolute. You either see it or you don't. TBI can be a misfortune for those involved or an opportunity. Choose to be a chosen one of the warrior class or choose to be a sniveling miscreant who does not see beyond the misfortune that has appeared in the doorway. Art

he's lucky to have you.  i was mislead by the title into thinking it was a story i could relate to about a relationship ending post TBI.  in some strange way it's an easy time to get over someone, in relation to memory issues, but at the same time it's been an impossible struggle to move on.  not just in relationships but certainly they play a huge part of what's missing now.  honestly i think i would've stayed with my girlfriend i was with at the time of my accident, simply because she was there from the "beginning" of my new existance.

Rosemary,

I read your writing again. How you have grown. Your writing is extraordinary. Deep but simple. It seems transference has occurred. You feel as Hugh feel's. This ability allows you to cope and share with husband. The world has changed immeasurably for both of you. The ability to "feel" something as traumatic as happened to Hugh, allowed you sustenance, in a sense. Deep were the ties you had with husband as witnessed by what has become of each of the paths traveling on. Expansion in a different form then you could have ever imagined, stepped into the door. Open it be an you glided with your partner through the hallowed gates of union, no matter what. Difficult as it was and still may be, life has become resplendent. Never would you have attained the perspective have today. Rich, richer, richest, or something like that. Yes, you have come to understand the life of lives...uncovered beneath all the pain and suffering has been revealed the hypnosis of society and thus of the living.  It be what it be and thus it be "just right!!!" Acceptance is the facilitator and humility is the road one travels. For what was, was...what is, is...and the realization of the present is ablaze. Feel, know, just right!!!

Art

Yes, Rosemary, TBI takes away the illusionary, sugar-coating, glazed throughout life until the day of ultimate singularity, day of death. We come in alone and leave same way...and thus it be!!!

Your spouse sustained the TBI but amplification of that fact comes streaming your way daily. Husband remains impervious of certain things, actually many things, I imagine. But take heart, as time moves on, capacity returns. I am living proof of such.

Belief an effort will cause it to be so, belief (faith), effort, and the ability to let life guide you to a purer you, meaning trust in your inner-self and the guidance it provides...for the hill will be climbed if the weather does not impinge on the understanding everything is "just right!!!"

Art

Thank you, everyone, for your beautiful comments. I feel so connected to the BrainLine community and all of the caregivers and survivors that visit this site and share their feelings. I wish you all peace this Thanksgiving.

This is so beautiful, and so true. What a touching, thoughtful and insightful read. Thank you so much for sharing it.

So Beautifully and Truly put Rosemary. In coincidence, I use to think that I would live forever before Brain surgery some eight years ago. I somehow felt exempt from demise, as I had never witnessed it first hand. Post-op, I know that some day that my calling will be before me. Living in tranquility and reliving that we are all alone at some points in our lives, I have been given the peace of mind to not be scared to die as I never have died before. The Only thing I am afraid of this point forward is suffering, as I had suffered many years Pre-op. Thanks for sharing and giving Others Hope to move Forward.

I love how you have learned to handle your life as it has changed.  Even without TBI problems it is a beautiful way to think of life.

This is so my life story... love the way you put it into words ... thank you .

Absolutely beautiful. My husband also has "glimpses of memory". I love this article. Thank you for putting it all into words.

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