Sometimes the loneliest place to be is in a crowd of people who don’t understand you.
I sat in the darkness, surrounded by people, cameras, and equipment, yet I was also completely alone. My life has become that way since Molly died. Very few people in my daily activities truly know how it feels to lose a child. For me to fit in comfortably I must put that away and be normal, happy Barb. Hence, my isolation in a crowd.
So back to the darkness, sitting on a rock not knowing what was in front of me. I could feel the upward rush of air so I knew I was up high. I could make out shadows so I knew I was in the mountains. There were also shapes and areas that I did not recognize. I knew I was in a canyon as I had been brought there. I sat, I took it in. I thought. I cried. I was amazed and surprised and humbled by what I began to see as the sky turned from black to purple and the stars disappeared. As the still hidden sun painted the sky a combination of colors for which there are no words, I became overwhelmed with such heart wrenching joy. When it shot up over the mountain range I smiled and sighed as relief washed over me. I saw at that moment my perch, my big rock jutting out into a canyon, the floor of which was roughly 800 feet below me. I have felt crazy, out of control and sad for so long that this experience was unexpected.
My only direction from the Assistant Director of the commercial being made was to “feel whatever comes up, think your thoughts, feel your feels. Invite us into what your life is like for you.”
As I was tethered to my perch, I felt a great deal of disbelief. Permission to publicly feel and express everything? As the crew backed away from me and I was left there, alone on the rock, I felt an acceptance and connection that was lost for me long before Molly died. As the music started it all came back, and rather than stuff it away I let it just come. I let it flow through me. I let it rise up and find its escape from the dark places in my heart.
I haven’t really committed to writing since Molly died. I have tried to but it just hasn’t been something I have managed to maintain. One of the major fallouts of Molly’s death for me has been feeling. Any sort of feeling has been unbearable. As I begin this post, just past the six-year mark of her death, I am beginning to navigate my feelings better. I can listen to music again, although I enjoy podcasts more now. I can work hard at the gym and find joy in the physical pain again. I can laugh in a crowd with authenticity and I can cry on my own without self-loathing. I am moving along in my life slowly and steadily.
My opening to this post refers to a TV commercial in which I recently took part. Montefiore Hospital was instrumental in healing my brain tumors and supporting my baby journey. Although they were not involved in my IVF process, they were incredibly supportive of my desire to have a baby. The commercial’s main message is me rising from the darkness of grief to the lightness of joy. There is so much to the story. In my journey for sanity in the days since Molly died, I have come to believe that the universe guides us to people and places. I also believe people and places come to us.
It was my desire to have a baby that led me to Emad Eskandar, a world-renowned neurosurgeon famous for his successful treatment of trigeminal neuralgia. Like many women who suffer from this neurological condition, I spent two years fighting for answers, being accused of looking for pain meds, being told there was nothing wrong with me and that I needed to relax. Hindsight shows me that this was good training for what would happen to Molly. The lack of treatment, the lack of belief, the accusations of faking, stress and attention seeking. It was long after Molly died that I found Dr Eskandar. He was (and is) a blessing.
At the beginning of my baby journey, I began weaning myself off of the plethora of medications I was taking. I had anti-anxiety medication, antidepressants, sleep aids, nerve blocks and anti-seizure pills on my list. None of these can be taken while carrying a baby. The process of coming off of these medications was long and difficult. I will always have a newly understood empathy for drug addicts who get clean. In my dependence on the medications I took, I always followed the prescribed amounts but I needed those drugs in a fierce way. My fear in coming off of them centered around sadness and anxiety. It was the mouth pain, however, that proved to be insurmountable.
Finding White Plains Hospital and the staff there saved me in so many ways. The story done on my journey in 2019 and now the commercial highlighting Montefiore’s commitment to the person before the diagnosis illustrate how medicine should be practiced. When brain tumors were found in my head and the mouth treatment took a back seat everyone involved jumped into action without hesitation. After the nightmare of Molly’s death and the involvement of the medical professionals in what happened to her, the care I received at Montefiore became more than just medicine. It became acceptance, understanding, and a relationship. It was and is a true expression of love.
So here I am writing the first of what I hope to be many blog posts. I sit in my “office” listening to the sounds of my 15-month-old on the other side of the door. I contemplate this new beginning I am attempting. Moving along in my life as Molly’s physical presence becomes smaller and smaller. Giving myself permission to repair and improve the broken parts of me. Permission to speak up. The birth of Jack has been truth revealing. Babies bring truth when they arrive. A medical community willing to love and support all aspects of the people who are their patients. Being given permission by these two things, Jack and Montefiore to “feel all that I feel” and to “share it openly” comes at a time in my grief journey where there is safety to do these things.
Grief journeys are unique. I can empathize and understand the paths of others AND I can be completely lost as to the choices they make. The love and acceptance I feel in my groups arrives from everyone no matter their perspective. It is my hope that talking about the journey I am on in my podcast and writing about it here will increase the reach of my words and the people they help.
My commitment to Montefiore in the form of a television commercial, billboards and just as I write this, Jack and me standing together 30 stories tall near Times Square is personal. I stand alone in that picture, with Jack on my back daring the world to challenge me yet again. Such a tender moment being shared in one of the busiest cities on the planet. A metaphorical comparison to being alone in a crowd, Jack and me up on that building as thousands of people hurry by. Here’s to our first steps in what I hope will be a thousand tiny ones.
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