Monday, October 21, I will officially share my Brave Enough To Be Bliss story with the world through my website https://www.gingerbliss.life. I do this with a grateful heart for the opportunity, not fear.
Just over six years ago, I scoffed at these words in an email from a pastor I knew of but hadn’t met personally, “I'll pray you're doing well, having a week with many reminders of God's love for you..." Three weeks later in desperation, I replied to that email asking tough questions wanting to find the spiritual answers that had eluded me for more than a year, or perhaps a lifetime really.
That email exchange led me to a lady named Ginger who guided me through what she refers to as Human School where she taught me self-compassion, the ability to see myself as a flawed and hurt human without believing that made me unlovable. For the next few years, Ginger encouraged me to write a book saying she felt the world needed to hear what I had to say.
Nearly one year ago, I left for Michigan to begin seriously writing in a place called The Shack and I began to find my voice. For more than 50 years I allowed fear to run my life leading me to exhibit controlling behaviors that, at best, limited and, at worst, ruined my relationships.
Fear, except while in haunted houses or watching horror movies, very few people really want it, yet I know I wasn’t alone in living in it. I have learned that, for me at least, fear is the enemy of love. I cannot fully give or receive love when I am living in fear of anything, but particularly, living in fear of potential or real pain. And when I try to do both, I create even more of my own and others’ suffering and in short, really make a mess of life.
On September 21, I had a soft launch of my book while at the Brain Storm Summit in Washington, DC, where I spoke briefly to this audience of grieving parents and healthcare providers who treat DIPG and DMG, terminal pediatric brain cancers.
In 2019, the man I deeply loved told me his mother had passed away and because I had not yet faced my own pain, I couldn’t be there for him in his pain, but it was more than two years before I realized I had failed him and apologized. And this is the story I felt led to share with the Brain Storm Summit audience. Crazy, maybe? GB Real, for sure.
My message begins at about 1:53:08 in the link below. I was asked to speak and share about my book, but given no direction beyond that, so I just listened to the attendees for two days.
What I heard in breakout sessions repeatedly was that "people are so stupid" and "they say the stupidest things," and no one except a parent who has lost a child from this disease can possibly understand. When a person is dealing with heartbreak, heartache, devastating grief and loss, anything less than taking the pain away or bringing back the person who died really isn’t enough, comforting, right, or not stupid.
And yet, what I heard as much from the parents was that they feel so completely alone and isolated, and in some cases, this was the case even many years after the child had passed away.
My message was tough and risky, but I'm glad I said the hard things in front of the hardest audience I'll ever have. I am not a professional speaker at all, I didn't have any idea what I was going to say until the evening before I spoke the next morning, so by no means is it flawlessly delivered or memorized (I'm a writer, not a speaker) just to set your expectations.
At an event called Ladies Night In on the second evening of the conference, I was at a table with parents who had lost a child to DIPG. I had spoken with one of them already and knew her son’s story, so I asked the other if she wanted to tell me about her daughter. And she did. I listened and the two ladies began to talk. I felt strongly that the younger of the two who had lost her daughter earlier this year needed a hug. It was simply a look in her eyes that led me to feel this way, so after another lady had joined the group, I walked around the round table, asked her if I could give her a hug, she said yes, and I knelt down and put my arms around her.
When you read the chapter of the book where I am given a hug lesson by the man I referred to earlier I had failed in his grief, you will understand how difficult this would have been for me to do several years ago. She held on tight and when she let go, we conversed a bit more and I gave her another hug before returning to my seat.
After the conference I found her and her husband on Facebook and they graciously accepted my request. I’ve seen some of their posts since then and what I’ve noticed from them most is that they write to their daughter in their posts, they write about their love for their daughter, their devastating grief, their heartbreak, but they also educate their Facebook friends about what they need, the kind of support they desire, they don’t push others away by shaming them for not suffering “as much,” but rather acknowledge others in their pain like those affected by recent flooding. They publicly welcome others to join them in their pain, their loss, their grief, they don’t push them away.
I don’t know much about grief, but I do know pain of varying types and when we can all join together on a level of shared pain as humans in this oftentimes hard life, we can lift one another up, support each other’s causes and not endure the additional pain that comes with isolation. But we have to be compassionate enough with ourselves to forgive ourselves for saying stupid things, sincerely apologize when we realize we haven’t said or done the things we should have, and even before that we have to heal our own pain, so we have the courage to be there with someone else in theirs, even when we haven’t experienced their exact pain.
Pain is subjective, we can only ever fully know our own because no one else is exactly the same as us. And yet, pain is something every human being knows, so it is the one thing we should all we able to share if we weren’t running away from it thinking we are protecting ourselves.
This book is an expression of the radical type of love I have for every human being on this earth, especially those in pain. We all have a story, what’s yours? I’m telling the world mine, so maybe you’ll share your GB Real story with one other trusted person knowing whatever it is, you’ll be OK if you say the words out loud, in fact, it will be the start of your healing from whatever or whomever has hurt you.
Following are the first couple verses of and a link to the song that came to provide me with comfort as I reflected on writing my story and questioning why there is so much pain in this world.
I’ve seen love come and
I’ve seen love walk away
So many questions
Will anybody stay?
It’s been a hard year
So many nights in tears
All of the darkness
Trying to fight my fears
Alone, so long alone
But that’s it. We aren’t alone unless we allow fear to lead and refuse to reach out for and accept help and hope, but most of all the love that is waiting for us through really flawed humans just like me.
To learn more about Brooklyn Rose, DIPG or to make a donation, please visit Brooklyn Rose Stong.
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