The Compassionate Equation

Nicole petting a cow

This morning I was looking through a journal and found these words I had written a couple of years ago ...

"If you could see the real me, you would see someone slumped over, hugging her knees to her chest, crying and asking the powers that be for no more pain. It is exhausting being here, with the world covered in shades of gray ... trying to believe the sun will shine again."

Grief and sadness had overwhelmed my soul, and there are moments today when those same emotions return. Moving through life, navigating the new normal, and understanding ambiguous grief as one of the most nonlinear processes ever is exhausting. It is also necessary.

A few weeks ago, I found myself at a difficult place with Taylor. The space between us had been growing for a while, and I struggled to get to the root of it. I knew the causes. Taylor was undergoing some medication adjustments, due to some heightened neurological challenges. The increase in medications caused increased exhaustion and agitation within Taylor, and it strained our relationship further. When things are strenuous for him, they are also off-kilter for us.

Prior to this time I had completed my 200-hour yoga teaching certification and was anticipating the next big step. I would be attending the Love Your Brain Yoga Teacher Training at Kripalu. This was a dynamic opportunity for me, and I had been looking forward to it. I know what it means to be part of something bigger than myself, and I felt gratefully excited.  

As the weeks before the training unfolded, I ignored the nagging ache inside. I felt farther away from Taylor than I had in a long time. How could he be drifting further away? We had difficulty connecting, and I felt both sad and angry at this newfound space between us. I hold a huge amount of love for Taylor, but I also had an awareness of what seemed to bang loudly on the door of my heart. I spent more time than usual wondering, “What would things be like today if this injury had not taken place?” I ached to know how Taylor’s life would have been, and what our relationship would be like.  

As I came into the training I felt exceptionally vulnerable. Emotions were far more pronounced for me, and I noticed an inner trembling in the spaces of my heart with a consciousness that (almost) seven years in, the road we walked still presented big challenges. And it still really hurt to walk this road.

The first night of the training I reminded myself how much having this experience meant and to not be swept away by my feelings but allow myself to observe them, without having to fully invest my energy in them. It helped that the training was yoga and mindfulness-based, and there was a certain gentle strength and quiet courage that filled the room of wonderful people. It also filled me.

A couple of days into the training we were led in an exercise. It was requested that we partner with someone we had not previously worked with. I paired with an exceptional young woman. As we sat knee-to-knee and heart to heart, we were given a prompt that opened up a door to sharing. One partner listened, without giving any verbal feedback while the other person spoke. I knew I could keep my response on the lighter side, and still answer the prompt, or I could dive deeper and tell the truth that had been stirring in my soul. The choice was mine. I decided to go deep.  

I explained how strained things had felt recently between Taylor and I, and how I felt the space between us expanding. Sometimes he was unreasonable, his opinions seemed harsh, and it was as if he was a rebellious teenager pushing my buttons. I spoke of feeling embarrassed of some of his behaviors. And how I wanted to “fix” him and help him understand that certain behaviors drive people further away. As much as I love Taylor, I don’t always like how his injury presents. Did that make me a bad mother? Or did it make me human?

I also expressed some thoughts that I have a hard time saying aloud, and yet I hear them screaming inside so often. If there is a root to my pain, it is in this … I miss my son. I miss who Taylor was, and who we were as a mother and son. I am grieving someone who lives with me, who I see everyday. In the weeks leading up to this training, I felt as if I was losing more of Taylor, day by day.

Throughout the long weekend I felt a reconnection to the compassion I hold for Taylor, and for those who have experienced traumatic brain injury. This compassion made me weep. The training brought forth reminders of what brain injury involves, and the lonely road that many survivors walk. My heart felt shattered for Taylor, and others. It also felt hopeful in a room with people who genuinely care about brain injury.

Sitting knee to knee, I experienced a new type of compassion. A compassion for myself, a hurting mother who would do anything to make it all better, but couldn’t. The compassion was in my partner’s eyes. I felt seen and heard. And a bit understood.

Today if you need to hug your knees to your chest and have a good cry ... please do. Let yourself be where you are in your journey without guilt, without judgment, without shame. Perhaps you can consider the idea of being compassionate towards your survivor, in a deeper way. Understanding this long road we travel and the potholes that present from time to time are part of the process. And finally, adding your self to the compassionate equation. Survivors and caregivers are doing hard things together, sometimes those hard things stir up painful stuff, and that is okay. It is normal. In it all, you both matter.

Comments (6)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

As hard is it might be to be the mother of a child with a TBI, please remember it is all that and so much more difficult to actually be the one who has to live inside a brain-damaged body. as much as you miss your son, I miss ME, and the abilities I once possessed to mother my two daughters well.

Also, a support person may suffer emotionally, but does not have to endure 24/7 physical pain and incredibly uncomfortable visual and other sensory issues. I am very tired of hearing about support people who claim suffering. Until you know what it is like to live year after year with a TBI, you can’t understand how that suffering makes your own pale in comparison.

I'm so very sorry for your pain, and the profound impact your TBI carries for you. Please know my words weren't meant as a comparison to any of the weight that someone with a brain injury experiences. My son, and all survivors, are the truest of warriors. In this blog, I'm sharing my truth as a mother & caregiver in the hope of helping others. With respect & love- Nicole

This article is so well written and true. After 11 years, I still grieve and count the days when I'm not crying.

I felt the weight of your word. I'm so sorry. With love, Nicole.

I think all survivors and especially caregivers can relate to this post. The loneliness, not wanting to say the hard things out loud, love, shame, hope, and desperation we all feel. Brain injury recovery is a lifetime commitment; not a quick fix. Of course, we will have our "moments". Some will have them more than others and there will be times of joy mixed in there somewhere.

Beautiful and thoughtful words. Thank you, Kelly. ♡