The Lesser Of 2 Evils: The Devil’s In the Details
I hated my Introductory Philosophy class in college. My Birkenstocked professor held forth on topics deemed boring by my ignorant young mind. Does God exist? What is truth? If a tree falls down in a forest, yet no one hears it, did it really happen? 50 minutes 3 times a week of Blah blah blah blah blah. Ridiculous, I thought to myself at the time. What practical purpose will this ever have in my life?
I smugly believed that, “Life is as simple or as difficult as you make it.” To this, my 45 year old self replies, Bwahahahahahahahaha!!!
Until then, my biggest crisis was having a night class at the same time my (then) favorite show, Beverly Hills 90210 was on tv. I wish I could go back in time. I’d shake my cringe-y self hard and say, Buckle up, my arrogant friend. God’s gonna throw you a curveball–if I were you, I’d bone up on my moral reasoning skills.
My husband Mike and I have navigated ambiguity since 2002 when our son Jack was born with significant challenges. And so we began confronting our own philosophical dilemmas. When Jack was little the questions looked like this: Should we pursue more testing for the chance to get a concrete diagnosis? Or should we move forward and not subject him and ourselves to more poking, prodding, doctors and heartbreak? More therapy to “fix” him? Or less therapy and “accept him?”
Now we are in new territory. In May, Jack started a medication that could provide him a better quality of life. Since Jack’s condition is so rare, his doctors guess at possible benefits and side effects, based on their experience with related syndromes.
What we’ve gotten is unexpected.
Almost immediately Jack’s headaches and meltdowns disappeared. He stopped picking his fingers to make them bleed. No more hitting his face. His mood’s perpetually sunny and his mind less foggy. Miraculous. Of course, there’s a catch. Jack has a side effect not found in the medical literature.
For 10 consecutive days, he sleeps 1-2 hours at most. Every. Single. Month. His face breaks out in eczema patches. He’s clammy, pale and shaky. He looks like the walking dead, yet he smiles like none of this bothers him. Is this side effect worth it? Is it worth it for him to suffer sleeplessness and its physical effects but otherwise be dramatically improved? Or is it better to have a worse quality of life all the time, complete with periods of self-harm and frequent headaches and only slightly better sleep–since his sleep wasn’t amazing to begin with? How do we determine which suffering is “objectively” worse? What is the lesser of two evils? Nonverbal Jack can’t tell us.
Often The “Right” Choices Feel Awful
We press on, continuing the medication and working with doctors to manage the insomnia. Is this the right choice? For us, and for now, yes. And that knowledge gives us some peace. We know from experience that honestly, many of our choices aren’t between good and bad—just bad and slightly less bad. Often the “right” choices feel awful, but reminding ourselves we do the best we can with the information we have helps. We use love as our guide and pray we’ll be kind to ourselves as we wrestle with solutions.
School’s over and I don’t get to debate about the existence of God. Now as a special needs parent, I am required to play God. Fortunately, I escaped my Philosophy class with a B-. Let’s hope that’s good enough.
I’m the mom of 2 great teens, Jack (16) and Megan (14), as well as of a very spoiled plott hound named Bubba Sue. I grew up in New Jersey, but have lived in the Cincinnati, OH area for the past 13 years. My husband Mike and I have been married for long enough not to look like our wedding pictures, but even after all these years, he still makes me laugh. After 15 years of questions and no answers, Jack got a diagnosis of Smith-Kingsmore Syndrome. I wanted to write this blog to help special needs families know they are not alone.