GREY MATTER LIFE

In the midst of living comfortably in our ‘normal’ and willingly sharing the emotions of our journey along the way, I still get caught off guard and it’s not always a bad thing. 

While I don’t share all that I write and I don’t share all that is our life and my every single feeling and emotion; I decided long ago, probably within the first 48 hours after my diagnosis, that in order to survive I’d have to be transparent and honest.  

Saying one thing and feeling another would benefit no one, most especially me. Being honest about this experience and what it’s like for me and for us as a family, I believed from the get go, would at some point serve to help heal the deep wounds inflicted by my diagnosis.  

I’ve shared.

I’ve cried while I’ve written and I’ve laughed a lot too.

I’ve questioned that anything and everything I’ve written and shared is nothing but stupid words.

I’ve questioned if any of this mattered to anyone.

I question that anyone will ever find inspiration, interest, pause or entertainment in any aspect of this journey.

I’m my harshest critic and I find fault in all I do.

Yet, amid all my questioning, I’ve maintained my writing for myself and as a chronicle of it all.  

Sharing has kept me honest with myself about what I and we are really feeling and experiencing. Being transparent has kept me accountable to both the beautiful and the ugly aspects of all of this.  

Yet, I often forget. I forget that what’s now our ‘normal’ is not most people’s normal. I forget that people have questions, don’t understand or can’t relate to our ‘normal’ and I lose sight that our ‘normal’ is what others may define as unmanageable or simply fucked up.  

I’m comfortable with where I am and I’m comfortable with the idea and reality of the path my diagnosis has put me on. I’m enjoying life and we are embracing it all. Life is great and I can’t imagine it being any other way.  

Sitting on a park bench with a friend as we talked and watched our children play, I was struck and caught off guard. 

In the midst of sharing and answering her questions about my journey with my brain tumor, what my diagnosis means, estimated time-lines for its return, the unknowns, how I feel about this and that, I realized that she had begun to cry. I was completely caught off guard.  

I had taken for granted all I know about our journey and how it all feels so normal, when in reality, it is so not normal. Our ‘normal’ is actually really fucked up.  

I’d lost sight of the fact that what I find so easy to discuss, openly share and be transparent with my emotions and feelings, had been afforded to me and earned after a significant amount of time digesting and coming to terms with.  

I was reminded in this brief and touching moment that while we do, as a family, embrace and celebrate this ‘normal’ we’ve created for ourselves, we do too often fail to see how completely fucked up it is in comparison to others normal lives. I found myself humbled.  

We’ll continue to move forward. We’ll continue to celebrate stability, the love of our friends and family, the health and happiness of our children, the blessing that is the coming arrival of our daughter and we’ll continue to live in the moments that comprise our ‘normal’.  

Moments like this, shared innocently on a park bench with a friend keep me grounded and remind me to appreciate that being transparent is as much about ensuring that our journey is readily understood and free of pretense, but that my outward view of everything else is as clear.