FTIAT: I will not sit idly by…
Chris (From the Bungalow) and I met face to face in March 2012, when I flew to Chicago to join him and his wife in shaving heads for St. Baldrick’s. Before that meeting, Chris and I had been blogging buddies for nearly a year. In light of our frequent thoughtful exchanges, I fully expected my introversion to be subdued even in the face of our first meeting. It was.
If you’ve been here a while, you know Chris inspired me to read the life-changing Donna’s Cancer Story. You know implicitly of his eloquence and ability to persuade; but for that, I would have a much fuller head of hair right now. What you may not know is that he’s also a father, a musician, a music therapist and one hell of a friend. My offline life is better for knowing Chris, and I trust you will understand why when you read his powerful words below.
Recommended post: Blissfully Bald
I will not sit idly by…
“They’ve ruled out everything else. I have ALS.”
As I listened to my mom speak those words, they didn’t make sense. Somehow, it never really registered with me until just now, right after I typed them. There has been an underlying malaise these past few months following the loss of my parents’ house to fire, and shortly thereafter, the sudden loss of my maternal grandmother to cancer. But that diagnosis… those words? Superficial until now. I didn’t want to accept it. I couldn’t.
Lou-fucking-Gehrig’s Disease, terminal in 100% of cases. Terminal? How?! How do we not know a goddamn thing about this? How did this happen?! Forget about that. How is my mom handling her prognosis? How is my dad handling it? My sisters? Me?
What am I supposed to do now? What is my mom supposed to do? I have more questions than answers. That’s an overwhelming place to be. I’m sad and angry. She lost both of her sisters when they were in their 30’s, lost both of her parents to cancer, and now this? An innocent, loving, caring mother and grandmother sentenced to death at some not-so-distant point in the future while her body slowly shuts down? Bullshit. It’s not right. It’s not fair.
And yet, there’s this voice in my head that keeps whispering to me…
Surrender, it says.
I’m angry, and I want to shut it up.
It won’t let me go…
The woman who grew me with her own body, nourished me with the same, nurtured me with empathy, enlightened me with bedtime stories, soothed me with back rubs as I fell asleep, protected me when I saw monsters in the dark, developed me by teaching me how to do household chores, empowered me with her absolute confidence in my abilities when I had to play a clarinet solo in high school or fretted over a final exam in college, prepared me for family life by showing me what a good wife and mother looks like, and countless other reasons I’m the man I am today… The woman who saved my life as an infant–literally–and many times over figuratively the past 36 years… She’s dying and I’m supposed to “surrender”?
Someone tell me how. Please… I can’t do this. I’m going to be sick.
(I’ll be honest. This is where I lost my shit. The floodgates opened and I had a bit of a breakdown. Feel free to take a moment here with me if you need it.)
Composing myself now, I revisit the word, “surrender.” I go back to Deb’s post on the subject, and that sense of oneness that is just as elusive as it is familiar begins to reveal itself again to me. It’s as if I’d forgotten what it feels like to fall backward into still water, only to rediscover its all-encompassing embrace. In Deb’s words:
The word “surrender” continues to resound through me, but it’s not just a word. It’s a feeling. The feeling is built from acceptance that there will be bad, and there will be good. There will be sadness, and there will be joy. There will be pain, and there will be relief. All of these things will be regardless of what I wish or how I feel about them.
That last line warrants repeating. “All of these things will be regardless of what I wish or how I feel about them.” I like to believe I have a certain level of … let’s call it “invested responsibility” in my life. I can’t say I’m “in control,” per se, but I can take ownership of most things that happen to me; however, when it comes to those things that do not happen “to me,” but have a direct impact on my life, I have to surrender. What choice do I have? I’ve long maintained that acceptance is one of the quickest routes to happiness, or in this case, a slightly dulled sense of pain. There are certain things I can do, but curing ALS is not likely to be one of them. Therefore,
I surrender to the cycle of life. Everyone who lives is born and must pass. I will be present to the moment and engaged with the people I love to the fullest extent possible during the time in between.
I surrender to life’s ups and downs. Life is an adventure. There will be times when I’m joyful, and times when I’m mournful. I will extract all there is to learn from both, and honor them equally.
I surrender to love. Fear is love’s enemy. Whenever possible, I will follow love and exude love’s offspring: hope and strength.
One of Lao-Tsu’s verses about water from the Tao Te Ching comes to mind:
Water flows humbly to the lowest level.
Nothing is weaker than water,
Yet for overcoming what is hard and strong,
Nothing surpasses it.
I sink more deeply into my chair now, surrendering to gravity, to the invisible sludge that’s laid anchor to my spirit. Like water, I slip through its grasp, occupying the deepest regions of my being, beyond the reach of fear and hurt.
My mom is dying, and I am helpless to stop it.
A surge. The dam breaks, and my momentarily peaceful being is transformed into white-water rapids. This is not the end, but a beginning. I am not powerless. Regardless of what I want or how I feel, it simply is. I may not be able to stop the progression of my mom’s disease, but I am able to show her the strength of my love. Certain things simply are beyond my power, and to those I must surrender. To those aspects within it: