The Worth of a Soul - Revisited

In September of last year you might recall reading this post I wrote in response to Ian Brown's powerful essay, The absence of normal "frees us". Since that day a lot has happened around here, and I have been left contemplating on the depth and breadth of the meaning found in lives, like Walker's and Ethan's. Rather than hyperlink back to it, I've included the post (nearly in its entirety and with a slight modification) all for the purpose of revisiting the thoughts Ian so poignantly expressed and to share a story recently brought to my attention. For the sake of privacy I have changed the names of those involved.

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The absence of normal 'frees us' (emphasis added - read the entire essay here) by Ian Brown

Without question the most common reaction people have, when they find out I have a seriously disabled son, is “I don’t know how you do it.”

It’s an interesting reaction, because in many ways, the act of physically caring for a boy like Walker is the easy part. Walker is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.

What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life?  Did he have any intentions, and therefore did his life have any purpose, any meaning?

That’s a hard question for any of us to answer, but it’s especially hard to answer for a boy who cannot speak or reason, and whose care consumes countless resources and many, many hours of human effort. Because I did that calculation too, when Walkie was an infant: if he lives at 10 per cent of human capacity, and if the care of him reduces my wife and I to 30 per cent of our human capacity, and if my daughter Hayley is set back 30 per cent, because of him—well, add those up, and you have two and a half lives spent to sustain the so-called life of one broken boy.  Is that worth it?

. . . it has taken me 15 years to see my way to this conclusion—15 years to see through the exhausting demands of day-to-day care of a boy like Walker, to a redeeming value of his life. I can’t help but wonder why it took so long, or why I had to conduct the search on my own. I also wonder why the medical profession, and the care profession in general, don’t help parents toward these insights—as the church might have in the past.

. . . The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.

I do not fully comprehend all that Ian's life entails, but I, in my corner of the world, understand when he speaks of 'dreary' times. Though we are potty trained, and do not require diapers, we do have our occasional problems. Showering, even at this age, requires assistance. Meltdowns, which occur less frequently with age are more physically demanding due to his size, and take more of a toll. Hormones, anxieties, compulsions, and obsessions color our daily world - sometimes to tears...

I appreciate Ian's candidness, and my heart breaks and rejoices for him. It breaks when I consider the fact that for fifteen years he struggled to answer a question that 'the church might have' answered in the past. His are questions I never had to ask, because of my understanding of the Gospel, I always knew there was a purpose to life, for ALL of us. I rejoiced in knowing that he has found that the answer to the questions are YES, it is worth it, Walker does have an 'inner life' as he says, and that there is purpose in all of this.

My words fall short in trying to describe how I know, but trust me, there is meaning! I can only give you glimpses into my world, just as we only have glimpses into Ethan's. But we take those glimpses and run with them. We cherish them for all that they reveal, even if they reveal more then we can adequately describe in words...

As Albert worked, I looked on, as we exchanged bits and pieces of conversation. About half way through our conversation he turned to me and said, "Did I ever tell you my Ethan story?"

I knew lots of Ethan stories, but not this one. I was anxious to hear what he had to say, though I was not expecting what he was about to relate.

For the longest time, Albert said, he had felt alone in the congregation. He and his family had lived here for years, arriving during a period of transition. The timing of their arrival, amidst the changes, may have added to the effect, nevertheless, from his first day, he felt like he didn't fit in. 

Each Sunday he walked the halls, seemingly unacknowledged. Nobody said hello, or ever seemed to recognize him or shake his hand, and he wondered if anybody even knew his name.

This feeling of neglect grew with each passing week. Eventually he began to question why he was even coming. If he quit attending, if he quit being active in church, would anybody even know? Would they even care? If he wouldn't be missed, then it would be easy to disappear. All he had to do was quit. 

The idea was formed. It was just sitting there, waiting for Albert to decide and to act upon it. "Do I stay, or do I go?" He prayed fervently for guidance. His head told him to make one choice but his heart suggested another. What would he do?

Then one night, Albert said, he found himself at the Ward's Fall Festival handing out candy. He was again alone in a corner of the cultural hall, his bucket of candy in hand. Masses of children would run up, dive their hands into the bucket, grab a fistful of candy, then dart away to the next candy sighting. Never a thank you or a kind word coming from their lips. To them Albert was nothing more then a sugar dispensary.

As the crowds of children darted in and out, like swarms of locust looking for the next field to ravage, Albert eventually found himself alone, again. His only company his plundered bucket of candy.

Then it happened. From across the room he saw Ethan approaching him. Ethan walked up, and in his monotone-robotic-like voice said, "Hi, Brother Albert, can I have a candy, please?" 

"Certainly," Albert replied, and held out his bucket.

Ethan reached in and gently took a piece of candy. As he turned to walk away Ethan politely said, "Thanks" and returned to the other side of the hall.

Just as softly as Ethan selected a candy from Albert's bucket, the answer to Albert's prayer had come. God had let Albert know that he was known. Not only was he known, he was known by name! Albert said, that night he came to realize that even if Ethan was the only person in the congregation who knew his name, it was proof to him that God knew him, and that was enough. 

"So," Albert said, "Ethan kept me from going inactive."

...We may never know what was going through [Ethan's head when he approached Albert,] but as I contemplate that incident, Ian's questions, and our answers to them, I am reminded of [another phrase] from a blessing Ethan received last winter:

. . . You will be given an ability to know when people need help and you will be able to know how people are feeling. You will be given words to say and ideas of things you can do that will let you help them.