A Loss of Words: Recognizing & Mourning to Move Forward

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It was a week ago, today. Saturday, June 29th. I was at her bedside after taking her on one of those roundtrips to use the bathroom with a gait belt and walker. And we were communicating or, at least trying to communicate. I realized, or finally, admitted to myself and she to herself, that her dysphasia had gotten worse. I sat down next her, putting my arms around her and told her, like I had 100,000 times before, that I love her. And that I was grateful for all the conversations we have had since we met in 1995. That I was grateful to know her to a depth I have not known anyone else. And she smiled a little. Her face lighting up for a moment. We joked for so long during our relationship that we shared one brain (her idea). I told her (again), that if there were some real way to give you half my brain, give us both full lives and be cancer free, I would do it. 

Then, we cried. And cried some more. Like we had many times before over the last 18 months. We mourned the loss of more spoken words. This devil of cancer had advanced and we acknowledged it. Like we had learned to do before, we would fully experience this loss for however long we needed. If it were 30 seconds, 5 minutes, 30 minutes… an hour. We cried, held each other, wiped tears away. And when we felt ready, we moved forward. Moved forward and not let this new loss rob us of the rest of the day and whatever quantity of moments that remained. To be present as much as humanly possible despite distractions. To be grateful as much as we could.

Even if it became more difficult to understand what she was communicating. I reflexively have reduced my questions to yes/no response. Or, single word decision tree answers that start from macro words (like “food or drink?”) to get to the micro (iced tea). And while doing this, mute the TV so she can focus.

This new communication method is far from perfect. It doesn’t always work. Sometimes she is reduced to saying, “forget it”. And this is the most wicked depths of this disease. Every other cancer that doesn’t metastasize or originate in the brain, you get to keep your words. You continue your conversations your personality. But, not with Glioblastoma multiforme. The most damning part of this disease is that it progresses fast or slowly. No two cases are identical. The net result being, you die in just a few months or, in Angela’s case slowly. Neither is better.

As we learned from all the cancer survivor material, this is our “new normal”. A way to frame this loss in a way to allow our brains to accept it and move forward.

If we learned nothing else in the last 12 months since she decided to go off chemo and go into Hospice care for brain cancer. Living as well as we can today is the most important use of our time. And not waste time on the thieves called worry and despair.


14 Responses

  1. Thanks for sharing these stories and your thoughts/emotions/perspectives with us Rob. I continue to ask God to keep touching Angela, you and your children while you all are on this journey.


  2. You both are amazing! I’m so glad she has you to care for her. I’m continuing to pray for a miracle for Angela! May God continue to give you both strength and peace.
    Charlotte Walker

  3. You already know my thoughts and love for you two! You’re an amazing man, Rob. You’ve had the most strength and courage through this journey. I’ve always envied the friendship, love and support you and Ang have always shared with one another through your trials and the happiest moments in your lifetime. I’m so grateful I’ve had front row seats to witness the bond you have with one another. I love you both and thank you for our friendship and encouragement you’ve both given me at times I’ve needed through these past 12+ years. Hugs and love!

    1. Christine

      Thanks SO much for stopping by. I do believe *that* is the most important thing, to live in the moment. And not dwell on the past (too much) or, worry about the future. Thank you for sending love our way, it’s much appreciated.

  4. Those few words back in 1995
    “In sickness and in health” are a haunting reminder of the frustrating and devatating these 12 months have been. I pray that you continue to have the strength to carry on.

  5. Powerful words of peace, light, and love, Rob Ainbinder. Thank you. Most of us cannot remember for five minutes at a time to treasure each moment, to be here now.

  6. Hey Rob……. saw a link to this when doing some of my genealogy research (I recently did the ancestry DNA thing and have been corresponding with your aunt Lois, who is my 2nd cousin). Anyway, just wanted to say how sorry I am for the loss of your wife. Riding the unpredictable waves of grief is never easy. Again my sincere condolences…Robert T Ross, MSW LSW

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