Even though I am the person who knows Sam best, I often wonder what loop runs through his head.
Communication has become an increasing challenge recently. And if you know Sam, you know he is not the most communicative fellow. He takes his time to process, and for someone who needs instant affirmation, this can be frustrating to me at times. Then I think, well, he is processing the most complex, avidly-avoided subject of everyone’s life: death.
ALS continues to be a journey filled with loss, and relationships are no exception. I’ve been considering, no, raging, at the fact that during the most difficult time in his life, Sam has to lose people along with himself. He is unheard in many different ways and on many different levels by so many people. I’m no exception.
Although I am, by nature, a critical person, I never want anyone who reads this blog to feel criticized. For better and worse, I am the person who receives the brunt of my most taxing harangues. I just believe that Sam has a story that needs to be told, and writing helps me to alleviate the pain and despair and numbness that consumes both of us at times.
ALS drains Sam of the physical and emotional energy required to butt his way into conversations, and all too often he sits silently, complying with everyone’s need to be heard and acknowledged. Sam has always been a good listener with the unnerving ability to read people, and now he really is all ears.
To preserve precious energy, our communication is dominated by his needs, and Sam hates it more than me. One look up, turn the fan on. Head flick to the right, turn his feeding tube pump off. He’s full. Needs to pee. Move arms. Shift. Lift bed up and down. Up and down. I follow his gaze to guess his need.
I write this to provide a picture of how we spend many hours, not for pity or sympathy. It’s my responsibility to care for Sam, and it is Sam’s responsibility to allow himself to be cared for by me. There are no guarantees in anyone’s life, and if there were, I doubt happiness and ease would be among them. Society places too much importance on attaining happiness. I can’t help but believe that this focus encourages us to run from what is most ugly in life, resulting in completely unnecessary marginalization. I am not immune from grasping blindly at whatever will dull the hurt and exhaustion from caring for Sam. It’s just so cruel to witness.
Our relationship has always been bound by something ethereal. Even though we share fewer words now (or really, he does), I feel no loss in what has always connected us — that something beyond description. This has helped to maintain and strengthen our marriage despite the constant see-sawing in my roles. Caregiver. Wife. Mechanic. Nurse. Private butler.
As anyone who has been through the trenches of terminal illness knows, the disease can’t help but change everyone it truly touches. And yet, the person it steals remains who they are. Sam is still the funny, smart, witty, loyal, playful, goofy, strong man I fell in love with. Lou can attempt to shadow this fact by stealing his voice, but with patience and attentiveness, anyone who wants to can still see Sam as Sam.
He’s still in there.