When the Fireworks Begin

Chapter XXIII

April 2012...

Devon was basking under the early morning sun.  She was lying down on a specialized chair for people who have similar condition as hers. It was a black electronic cushioned chair, breathable enough so that bed sores would not frequently form in her back.

The day she lost muscle strength in her hands and fingers, her arms followed suit in a few weeks. It was gradual.  It started as stiffness and the feeling of swelling, eventually, she was unable to move them anymore. She was devastated of course. But she could not dare show it at her family and friends. Especially with James.  Whenever she would lose something, James looks like he could kill someone.  He was angry and sad at the same time.  And her crying about her situation, will not help him at all. 

She loved mornings like these. The early morning sun was hot enough for her to feel, and yet the wind is cooling the patch of heat.  They say that patients who suffer from ALS just like her does not lose the ability to think, feel and hear, even though their physical abilities disappear one by one.  This is one of the cruellest thing about the disease.  Patients feel trapped in their unmoving bodies while their mind wandered free.  And she finds that true. 

But somehow, these mornings had helped her realize that there are still things worth thanking for.  She could still swallow, although it is painful sometimes.  She could still talk, though her voice breaks sometimes. Without a doubt she could still feel and savor human touch, though she could not touch them back.  She’s still alive, and while she’s breathing there is still always hope.  Devon closed her eyes and drank all the sunshine’s warmth.

Several months have passed since Devon last used her fingers.  It was the day when she lost something but her husband has gained something back.  When James got home from work the day she lost her fingers, he looked like he was several years older and yet his steps appeared to be lighter. 

My dad and I talked today, James shared. 

What did you talk about, Devon raised her hand slowly hoping to hold his hand. But instead her hand landed forcefully on the top of his.  It was not dramatic as she hoped it will be. Fail.

James looked at her hand.  He took it, gently massaged it and brought to his lips.

Let’s just say that we made a truce, James said with a soft smile.

Devon smiled back. That’s good news, she said.

Very good news, James answered.  It made me so light here, James brought Devon’s hand on his chest.

I finally got to see you and your father reconcile before I die, Devon said.

James did not reply, instead held her hand and cradled it against his cheek.

It feels so good to know, that when I die you will have your complete family behind you, Devon continued.

Let’s not talk about death, James asked.  Let’s talk about the good times instead.