We have all had these types of visits. The kind that you literally cannot get out of the home fast enough. As I rushed into the safe cocoon of my car, the tears that I had been trying so hard to hide came flooding out. Not wanting to be seen by anyone connected with the visit, I drove to the closest empty parking lot. To be honest, not sure if I was fully in the space or how my car got into park before my emotions took hold.
The condition that will eventually take her away is a ruthless thief. It has stolen her ability to tie her shoes or button her shirt. Gone are the times that she could dance around her kitchen as dinner simmered away. She was a great decorator and loved to transform her friend’s homes. Her green thumb made her the type of gardener that had the biggest blooms and the ripest tomatoes. Her daughters, even though they are adults with kids of their own, still sought out the warmth of her hugs and the safety of her smile. But, with minimal warning all of this vanished.
As I sat near her today, we talked (I talked and she would blink her eyes or smile or shake her head no) about how the flow of her disease was going. When I first met her, she had just lost her voice, her ability to speak and was not able to walk. We would communicate by me holding up a laminated sheet with the alphabet and moving my fingers across the letters. The letters made words and I often would be able to make out what she was telling me. Sometimes, if I came up with something wacky, she would lean her head back a tiny bit, squeezing her eyes shut, cracking the tiniest of smiles. To be honest, on more occasions than I can count, I would muddle it up, just to see that smile.
Today was different. I could sense a shift in the air. Frail and weak, her face is pale and her eyes sunken. The mischievous sparkle was not there. She has been refusing most medications because swallowing was an insurmountable obstacle. Her muscles and nerves had betrayed her every time. I looked into her dark brown eyes, searching for her words. It was at that moment that her words came screaming out, even though she never made a noise.
“Are you not taking your medications in hopes this will all end?” The words left my mouth and her eyes closed shut. She began crying, the type of guttural cry that breaks anyone near. It made me recall the painting of the Scream… the tone reverberates loudly She didn’t make a sound, but, she opened her mouth, wailing. ALS had robbed her of her voice, but, her scream had never been louder. I felt her pain and anger, her frustration and anguish, her sorrow and her loss of hope. It was harrowing. The tears rolled down her face and I knew she had enough of it all.
Swallowing back the lump in my throat, I was able to explain that her medications wouldn’t hasten nor prolong nature’s will. I know she was searching my face for answers. She wanted to know how much longer she would have to suffer. She wanted to know what would make all of this be over.
The answers she was looking for were not ones I could share. There was nothing I wanted more than to tell her what she wanted me to say. Trying to lighten the mood, I explained that I had broken my crystal ball, so prophecy wasn’t in the cards. But, the second question, that soul shattering question of what could be done to make this all end is one that I would never answer. As a hospice nurse, I am a guide on this journey. I can’t change the outcome nor will I hasten the ending.
She may have not had a voice, but I have never heard anyone clearer. Her scream was silent but I felt the vibration to my core.
Our visit went on and by the time it came to an end, she had managed a few weak smiles. As I held her hand, I know she wanted nothing more than to be able to squeeze back. Where words didn’t exist, she was able to make me understand with her eyes.
I spent a few moments collecting myself in that parking lot. A few deep breaths and half a pack of tissues later, it was time to move on to my next sweet soul. As I sat up, adjusting my scrubs, I caught a glimpse of my eyes in the rear view mirror and stunned. Just as her eyes held the secrets locked in her soul, I recognized the reflection of my own in that moment.