“The Door Or the Window: Reflections on What It Means To Be Free”

I could’ve been born at any time, and in any place in the history of our world. But I was born, at 2 am, on the 26th of August, in the year 1982 AD.

I can’t begin to calculate the astronomical chance that I would be born in the late-20th century to white, middle-america high-school sweethearts, (who were still desperately in love), in a country where women are free to pursue their deepest heart’s desires. Growing up, I remember constantly dreaming, writing, and exploring, though my super-sensitivity caused me at times to retract into myself. I was always encouraged by my parents to ponder and to wonder, and as a result, I have never lost my insatiable curiosity about the world. I was born free to be the open heart, the artist, & the student of life that I am, and I remain eternally grateful for that reality.

By the time I was in college, I had been writing music for about 5 years. I felt a stirring to move in an opposite direction than that of my peers, who were dreaming of marriage, kids, a house, and a stable 9-5 job. It wasn’t that those things were offensive to me. I dreamt of finding love. I wanted kids. But what I wanted most, was to live a life AWAKE, based on passion, travel and freedom.

I spent a decade struggling with truly listening to the inner workings of my heart. By 20 years old, I felt certain that I wanted to be a professional, singer/songwriter, but it was always two steps forward, one step back. I had the drive, the perseverance, and the musical skill to achieve it, and I made great strides through huge bursts of energy that propelled me forward. But I always got side-tracked (or what I believed was side-tracked) by my relationships.

Unaware until the last few years of my life that I was an Empath, and that I was built to “feel and heal”, I found myself drawn to every broken person that would come into my path. I would dive head first into the depth of their pain, and throw my life into alleviating it. It came so natural to me that I didn’t even realize I was doing it. And then, I would shake my head in disbelief when that relationship ended, and I was left with my career ice-cold on the back burner where I had left it.

Today, on the 4th of July, sitting in the lobby of my building, surrounded by tables with flags draped in red, white and blue, the idea of Freedom is naturally dominating my mind. Not so much the freedom of our country to live by its own ideals, (though obviously that as well), but rather the freedom of every individual to greet each day with a certain outlook; to choose joy or pain, gratitude or ingratitude.

TBI caretakers and survivors often feel like their freedoms have been taken away from them. Survivors are stripped of their mobility, cognitive abilities, social networks, careers, marriages, friendships and so on. Caregivers, whose lives are forever changed by TBI as well, find that their world is narrowed tremendously by their role as advocate, provider, and protector. It is so incredibly hard to not wake up and wish you could go back; wish it could be undone. It is so incredibly difficult to not feel jealousy when you witness seemingly “normal” couples doing “normal” things on a major holiday; so blissfully unaware of their good fortune. It is so difficult to stop staring at the closed door in your face, and turn your head towards the open window.

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The Closed Door or the Open Window?

I’ve fashioned my life around working as a musician, so that I could always travel when I wanted, without feeling tied to something like a 401K or a raise. I’ve always rented a home so that I wouldn’t feel tied down to a mortgage. I’ve never kept expensive things that I would have difficulty throwing or giving away. And I’ve never cared that my lifestyle has somewhat isolated me; that I never had “work friends”, or “playdates” or got invited many places. It never bothered me that my life was so different from that of my peers. Until TBI entered the picture.

TBI keeps the life I had fashioned from being possible, and has a way of being extremely isolating as well. And so today, if I allowed myself, I could easily drift off to the “what if’s” and “should haves” that never do anyone any good. What if I had followed a more traditional path after college? Would I be like them? Would I be happier? What if I had worked harder to call Patrick back the hours before his accident? If he had spoken to me a fraction of a second longer, could I have prevented this? Truly, it is only when your life feels so far from normal, that a gypsy woman dreams of something as traditionally American as as going to a BBQ with friends, and watching fireworks. Those are the dreams these days. Simplicity. Normalcy.

But the reality is, that TBI demands that each of us make a choice. Its reality is so fierce and so blunt and raw, that we simply cannot live in an in-between state of existence. For as long as we draw breath, we are free to choose what we will focus on; the blessings or the curses, the suffering or the healing. And I have found personally that this journey towards living in a state of gratitude has been my most challenging thing for me. I have been, and continue to strive to become more aware of my thoughts, which always generate feelings. And that is the point I am trying to make: it is an act of FREE WILL to love, of FREE WILL to stay with our survivors, and of FREE WILL to choose to focus on gratefulness.

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Choosing to love is something worth celebrating every day.

We must remember: Freedom lies in the open window, not the closed door.

This is not me preaching from the pulpit. I am impossibly human, and spend far too much time staring at the closed door. But we are given the choice to CHOOSE to be free. And that is insanely beautiful to me.

I’ve realized recently, that though I’ve always wanted to make music, what I’ve always wanted more was to make a difference. My heart lies in a quest to change the world for the better, one human interaction at a time. THAT is my life’s calling, and music is one avenue through which to do that. I have grieved my music. I have been angry and frustrated that I’ve not achieved my artistic goals. But if I had been the fierce business woman I wanted to be, and kept my nose to the grindstone, forsaking relationships left and right, instead of stopping to help the broken, I simply wouldn’t be who I am today, or have made the music that I made either.

Tonight, Patrick and I sat on the patio of our building and waited to watch for fireworks over the marina. We watched the sunset; a spectacular display of light, clouds and gulls over the beach. Then we waited in the dark with other residents. Patrick was too scared to stand up and hold onto the 6th floor railing (his fear of heights has increased since his accident), so he sat in his wheelchair, and I stood beside him.

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Our view from the patio. Breathtaking.

As the fireworks began, the crowd got quiet as we all were reduced to children with an wondrous awe. I felt a chill pass over me, and swore I felt Patrick standing with his strong body behind me; wrapping his arms around me, nuzzling his face into my neck and whispering something to me. And there it was: A ghost. A melancholy pang to the chest. The closed door.

The closed door knocks the wind out of you every time you look at it. I always have to keep from buckling at the knees when faced with it. This time it seemed too much to bear, so instead of trying to stand, I simply lowered myself onto his lap and the wheelchair.

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Fireworks as seen from our building.

He put his arms around me anyway; first his strong right arm, and then his weak left. He pulled me close.

Open window, I told myself. This is the open window.

Discussion

Comments

6 Comments

  1. Thanks for the great read tonight. We are what people would see to be a “normal” couple, until I suddenly freeze up and begin swaying, unable to balance, and my boyfriend rushes me to the closest cafe to buy me something sweet to drink before I collapse. We seem “normal” until I become overstimulated from a hot, humid, crowded train and begin stimming and start going into a panic attack. Brain Injury is a blessing and a curse, I always think, because potentially, you are able to look “normal.” And yet, because it’s so invisible, people are reluctant to provide an understanding hand to help. You’re wonderful survivor as well as he. Keep up the amazing work and morale. 🙂 My “you” was my mother, and I will forever be thankful for her dedication in raising me back up to my functionalities.

    • Anj Granieri

      What you said is very true. That’s why I used the word “normal” in quotes, because of course there are people who suffer from TBI and they do look normal- but still suffer. And if we expand that, there are plenty of people suffering from all kinds of hardships that seem “Normal” or “happy”. All of us struggle to focus on the blessings. I am glad to hear that you had such wonderful support and a loving boyfriend. Keep on keeping on warrior…

  2. Dagmar

    You are an amazing writer. Your skills to write clearly and thoughtfully are simply wonderful.

    I am the tbi survivor, going through a difficult time right now. I am told I’m dealing very well with everything, considering the various stressors that have been piled on me in the last couple of weeks with a parental illness and a death in my extended family. This stressors though have left my resources depleted I guess, and yesterday my wonderful spouse/caregiver was with me through meltdown after meltdown. I don’t want to meltdown, it doesn’t feel good, I don’t want to hurt my spouse…..

    I guess what keeps us sane is looking at that window and knowing that even though the door is closed, everything happens for a reason and many of those reasons will turn out to be the most joyful things we will experience in our lives.

    All the best to you and Patrick.

    • Anj Granieri

      Thank you for your comment. And for your beautiful words regarding my writing. Congratulations on your recovery and being the warrior you are! I know you hate to feel weak and meltdown in front of your spouse but I am sure he/she loves and understands your plight. And the last line of your comment is so true! Through the open window lie joys we have never known possible. Hugs to you xo

  3. Donna

    Sometimes I have such a hard time getting my words to come out the way I want them to your story sounds so similar to mine anj except I’m the survivor not care give or.so if sometimes what I type isn’t quite correct please bear with me I am a survivor and am trying! anyways been rolling you and Patrick for quite a long time and find I draw strength from you.Somehow I feel a connection probably just because I am just feeling so lonely lately and bored I need to be able to go exercise at the gym get out a bit .But wanted to let you know a big thanks from a lonely friend in Northern Michigan letting you know you bring a bit of sunshine in my day it’s like Hearing from a family member I’m realizing how many people lately I look for every day as soon as I open face book I don’t usually say much but I’m comforted by everyone’s mere precence!

    • Anj Granieri

      Donna, I like to think that my blog appeals to survivors as well as caregivers. Our struggles may not be exactly the same, but we are standing on either side of the same pain. I am so glad that you follow along – I had no idea you’d been with us so long. I am sorry you feel lonely and bored – i can certainly relate – don’t give into it! Hugs from Atlantic City all the way to Michigan! I am SOOO thrilled that as you said, its like “a bit of sunshine” and “hearing from family.” We ARE family. TBI Family!! Keep reading! xoxo

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