Please Come Back

​Six years later and I still have anxiety whenever someone I love leaves me for anywhere, for any amount of time.  Please be safe, I whisper.  Please don’t go.  

Six years later and I still have to practice breathing again whenever I hear an ambulance siren.  Whenever I drive by a crash.  Whenever I hear of a horror.  If my daughter, 700 miles away does not immediately respond to our group texts with me and my other children, I have a creeping panic until she writes, “Omg, Mom.  I’m in class.”  Even when I know for sure she’s in class.

Six years later and I hate winter.  I hate its lifelessness, its starkness, its death and especially its darkness.  I’m frightened of the dark now.  Of the panic attacks and the memories and the embers of the shattered dreams that glow in the darkness.

Six years later and I love to excess, smothering excess.  Six years later and I am cold as fuck.  The same heart that burns like wildfire is walled in ice, ferociously protective of those already inside, dispassionately protective of itself.  Six years later and still I’m terrified of what’s to come and who’s to go and where we will all be in the next six years.  

My oldest daughter suffers many of the same anxieties.  She faces them.  I hide from them.   I hide behind my keyboard.  I hide in destructive relationships where screaming is the norm because screaming at least allows me to feel something.  I hide in denial from myself.  My daughter accused me a month or so ago of transferring all my anxiety to my house as I, room by room, made excessive changes.  Ripping out carpets, redoing floors.  Buying new furniture and new throw rugs and lamps and a new washer and dryer and a car.  Repairing unused patios and lights and tossing memories out in the dumpster.  

 You’re going crazy, she told me.  You aren’t happy.  I argued with her then.  I told her I was so very happy.  Look at me!  I’m so happy!  I’m finally concentrating on something else besides just caring for Damon; I’m making my surroundings beautiful and colorful and bright.  What gives you the right to tell me I’m not happy?  

Concentrate on yourself, she answered quietly.  You are concentrating on everything but you.

You need to care for yourself like you care for Damon.

I laughed at her. I rolled my eyes at the ridiculousness of what she was saying.  But I began to question. I questioned more a few days later when someone, a total stranger, said he saw a deep sadness in me, making him want to make me happy. I smiled sweetly. I took his offered arm and used it to push him away. 

By the time my daughter left to go back to her apartment, I knew she was right.  

Six years later and I work up the courage to look in the mirror. Six years of too much sadness and too many deaths pounding on a psyche already injured from years of emotional abuse has left me broken.

I know I need to make changes.  I know I am stagnating.  I must face the fact that I am not immortal, and can’t merely keep putting one foot in front of the other to only survive each day. I will need to take an active role in my own life.  

As I gaze at my reflection I realize I don’t just miss that girl who disappeared six years ago, but the one who disappeared many, many years before that.  The girl who had no story.  The girl who was able to twirl, unhinged, like a ballerina and throw caution to the wind.  And live.  

I need to bring her back, whatever it takes.  I need to bring her back. 

Six years later and I must now endure another crash, but this one inside my head and my heart. A complete demolition.  I know I have to break down before I build up. I need to rip apart that diseased part of my mind that is too frightened to move on. I know I need to tell the whole story.  I know I must face truths that are uncomfortable. I know I will leave some destruction in my path, and as a tornado doesn’t wait around to clean up its mess, I will not hang around to clean up the toxicity I toss out of my life.  

I know the people who love me will continue to love me and I know my inner circle is all I really need.  I know my Facebook friends are like ghosts I can put my hand through; they do not really even exist.  It doesn’t matter what they think any more. I write for me.

Six years later and I now know I need to care for two people going forward, not just one. I may never rid myself of my acquired anxieties, but I need to take care of them, not hide from them, with the same compassion and gentle understanding, love, and patience I use to take care of Damon. 

For six years I have been on my own form of life support, but the equipment has been flawed, and I have been barely breathing.  I know I must breathe again totally on my own…deep, deep breaths that fill up my lungs and make me giddy with too much oxygen.  I know I must grasp tightly onto offered fleeting moments of happiness, of truths, of passion, of goodness because without them my soul will completely wither away.  

Six years later and I know I somehow have to make this journey.

Stay safe, I whisper to myself.  Please come back.
 

Truth Be Told, or Written

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My best writing came out of an online class I took last summer.  It wasn’t so much due to the instructor because the instructor didn’t really instruct,  and all her critiques on everyone’s pages seemed to be nothing but positive.  It was moreso because the prompts were fantastic and could be tailored to my story and because I was forced to write at least 300 words a day for about four or five weeks.  And it was because I was honest in what I wrote.  Truly honest.

I amazed myself that I wrote as well as I did considering most of the time I do not reside in a physically or mentally quiet place.

Sometimes I wrote in hotel rooms two hours from home, totally exhausted after tucking Damon in for the night after a long day of physical rehab.  Sometimes I wrote at home, after a twelve hour day which included driving to and from rehab,  again after Damon was in bed for the night.  Sometimes I wrote during the rehab session itself, in the waiting room, in a panic that I was coming up on the class deadline and I wasn’t even near finished.

And sometimes I just wrote during the day at home amid the noise of Damon’s online games, his loud music and YouTube videos, and in between fetching this or that, doing laundry, cleaning, bathing, dressing, or feeding this 21- year-old, brain-injured son of mine.

 I don’t ever have the luxury of a bulk of free time to dedicate solely to my writing.  I do have a quiet room, a beautiful writing room, but never much opportunity to sneak into it to use it.  Such is the life of a parent caregiving to her disabled child.

Damon has little patience and can’t seem to comprehend that if I am holding his urinal bottle in place for him chances are pretty high that I can’t get him his phone, get him a drink or stand on my head at the same time.    I only have two hands, I say, and I wince, because that is double of what he has functioning, right now.

So he certainly doesn’t have the patience for me saying: One second.  I’m in the middle of a thought. Or: How badly do you have to go? Can you hold it until I finish this sentence?

Even right now, during this short spurt of writing, I have been summoned to his bedside three different times to adjust his pillows, to fix his sleep mask, to rub his ankles.  I write a sentence, I get up, I write two more sentences, I get up, and I come back to finally finish a paragraph.

During the online summer course, however, somehow, regardless of my ups and downs and ins and outs, despite the urinal bottle and the showers and the pillow adjustments and wheelchair transfers, I did find time to write every day for those four or five weeks. I felt so inspired by those online prompts and so hungry to get my words into sentences and paragraphs and essays that I wrote any and every few minutes I could find throughout my crazy day. Of course, I also didn’t want to be  embarrassed that I failed to produce something on any required day even though grading for this course was not a factor.

And, even more amazing than all that, I was happy when I read what I had written.  Seriously happy.  Confident.  Wowed by my own essays.  I thought some of them were so good, I sent them on to friends, just waiting to bask in their adoration of my words. And bask I did.  For those four or five weeks.

During the course, I was also required to read the other students’ writings and critique them. And they mine.   I felt like a buffoon at first, critiquing English majors and “real” writers, because honestly, I had no clue as to how. I do not know about juxtaposition, split infinitives or allegories (Yes, I googled those.  I’m an accountant for heaven’s sake).  But as we got going through the weeks I realized, that like an average reader, I either like what I read, love what I read, or I don’t. Not because of juxtaposition, split infinitives or allegories; for no other reason than it’s a damn-good, well-written, truly honest story.

It was scary as hell to write for and be critiqued by those who knew so much more about everything literary. Even though I knew I had a damn good subject.  And I knew I could write.

What I didn’t know was if I could be honest and raw and real….everything required to tell a story like mine.

I didn’t know if I could truly write from my soul, from seething pain to sheer joy.

Brain injury is a journey of emotional turmoil for the loved ones of the injured.  We are thankful beyond measure our loved ones are still with us. We grieve beyond measure at the daily reminder of whom we lost. Neither emotion can be hidden; both need to be acknowledged for the story to be true.

I found it easy, after a few attempts, to be more honest in front of faceless strangers.  Much easier than being honest in front of friends, Facebook or real. They didn’t know me.  They had no expectations.  And I felt they were not there to judge my topic, only my presentation.  And therein lay the difference, the step-up in my writing.  My honesty, transcribed into words.

Looking back today, however, I’m actually frightened of what I wrote last summer. I’m frightened not only in sharing what I wrote; I have little confidence now that I can continue at that honesty level, which is the level of writing I need in order to take the next step in actually writing the book.

Honesty requires bravery and I’m scared to be so vulnerable.

It’s no longer  just about me staying honest about myself, as I was last summer.   I need to step it up now and go even  further than that to tell the whole story.  I now also have to be honest about others, regardless how they come across on the page. Honest about their reactions. Honest about their emotions and the way they impacted me and the situation.

Honest about the hell that comes with brain-injury and caregiving. 

Honest about what happens when life shatters and then just keeps on shattering.

During the early days, actually the first few years after Damon’s accident, I wrote on Facebook every day. It was a cathartic healing for me, a way to deal with what was going on around me, to make sense of it, and to send out hope, to update friends. But I wasn’t always real.  I was seldom totally honest. I couldn’t look over the edge into the darkness, so I wrote of light.

I stayed cautiously positive and hopeful, instead of writing what the doctors told us about vegetables and nursing homes and pulling the plug, because really, I thought, who wants to read the negative shit?

Responses and comments came flooding in, gushing about how inspirational we all were.  How much love our family had.  Our strength. How we exemplified  the meaning of family.  And I read them all as I sat in the rubble, the charred remains of my life, the crumbling of my family unit.

They wrote of my strength as a mother.  They asked how I kept it all together.  They didn’t see me go 4 or 5 days without a shower, sometimes unable to put one foot in front of the other.  My total exhaustion.  My heartache.  The pains in my shoulder and back so bad that I couldn’t get up to walk.  They didn’t see me throw things or cry myself to sleep.  They didn’t see me wiping up vomit or shit or screaming at the top of my voice.  They didn’t see it because I never wrote about all that.

I never wrote about it because writing of the negative wouldn’t serve my purpose.  I couldn’t mention my shattered surroundings.  Because, again, who wants a daily dose of negative?

I wanted my readers to come back. I wanted them to be happy and hopeful.  I wanted them to follow the story.  I needed to keep Damon in their minds, because by being in their minds, perhaps he remained in their prayers and perhaps the universe would shift and miracles would happen.  Perhaps sending out the positive would cause the positive to be returned to us, to him, tenfold or more.

And we know that miracles did happen.  Miracles the medical profession just could not believe. Miracles they never saw as remotely possible. Of course we have so far to go.  But Damon is with us.  He is alive.  Damon can communicate.  He can laugh and make us laugh. And most importantly, he can love and be loved so much right back.

But he’s not the son I had. And this isn’t the life I wanted.

 I feel the time has come to tell the full story, complete with the darkness.

I need to share my fear, my panic, my broken heart, my broken home, my broken dreams.  I need to write of the depression. My need to be in control.  My losing control. My selfishness and my selflessness.  The loss of marriage, of friends, of a life that looked so picture perfect from the outside. The shattered happiness and loss of such a bright future. 

I need to entwine those truths with the miracles, the inspiration and the faith with the horror and the hell. And I need to tell it from my viewpoint.  It’s my story.  It’s my life. And it may upset  a few people.

Why don’t they understand what I’m going through?  I, exasperated, recently asked a friend about a close family member of mine.

Because you have made it look too easy on the outside, he responded. You’ve sugarcoated it.

It’s been anything but easy.  It’s been anything but that.  And I need to write it all down. Because the truth may help others.  Others on this journey.

My ultimate wish is just that, to help others following in these footsteps.  I can’t do that by glossing over the darkness. It will be no help to them if they read words of inspiration only without the words of despair pushing out from behind the inspiration.

I want to write an honest memoir and I want to try to fully open up.  It is time.  But, for me to write anything on a serious level, honest or not, I need to stop procrastinating.  I need that kick in the ass. That pressure.  Those deadlines.

So, I signed up, once again, for another online course.  This time it’s ten weeks long.  Ten weeks of writing every day. Of reading others’ writings every day.  I can massage every prompt, like I did during the first session, to fit my story however I want.  In this setting I hope to flourish.  I plan to be as truthful as I can.  I will piss people off.  And I will try to write a damn-good, well-written and honest story.

I hope to include the essays I write over the next ten weeks in my blog, well, as many as I can without compromising my book.  And I promise to…..

Hold on to that thought….I need to get Damon his breakfast.

 

 

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