It’s a cool fall evening and I just got off the phone with Sean, a good friend of mine. He just finished dinner with his family and invited me over.
His family lives in town. We live outside of town down a half-mile gravel lane, we affectionately call The Vale Lane. The Vale is the name of the small intentional community we live in. My father’s family lived here when he was young and my mother, father and sister moved back here right before I arrived.
I’m 15 and my father has been sick with ALS for almost 4 years.
I close the door to my room and walk down our staircase my hand gliding down the clear plastic banisters. He is sitting in his usual place at the dinner table. He is in his electric wheelchair with his dark blue velvet quilt on his lap and his breathing tube. I tell him I’m headed to Sean’s and give him a hug. He tells me, as he always does, to be safe and have fun.
I close the door behind me and head out to the garage to get my bike. It takes me about 10 minutes to bike into Sean’s. I head up the gravel lane dogging potholes pedaling as fast as I can. I cross the old bridge that used to go over the train tracks. There are no tracks below anymore. Just a bike path.
Once off the gravel lane and over the bridge I ride the rest of the way to Sean’s no handed. Maneuvering with the weight and swaying of my body.
As I approach his house I scan the driveway to see if his parents are home. Crap, they’re both here I realize as I spot their green minivan and battered silver Honda civic parked side by side.
I pull onto their lawn and lean my bike against the large black walnut that towers over their house. As I walk towards their house I begin to regret the conversation that I have yet to have.
Ellie, Sean’s mom, would answer the door since Sean was probably in his room reading or playing chess with Kevin his younger brother. Ellie would ask me questions about my dad. How is he? Is he doing alright? How is your mom doing? How are you? She wasn’t as bad as some parents. But, I still dreaded the conversations and tried to avoid them.
I knock my knuckles against their front door. I hear some scuffling and see Ellie approaching me through a side window.
“Hey Kumar! Sean said you were coming over, come in.”
“Thanks! Ellie, how are you?” I respond trying to avoid eye contact. I step into their entryway and start untying my shoes. Damn, I think to myself, I shouldn’t have double knotted my laces, she’ll have plenty of time to ask me questions now.
Sure enough as she closes the door she starts.
“How is your dad doing?”
How the hell do you think he is doing I want to spit back at her. The question infuriates me. He is dying, that’s really how I want to respond, but I don’t. I breathe in and say, without looking up to see the pain in her eyes,
“Uh, he’s doing alright” and quickly add, “not much has changed.”
I can tell she wants me to talk. She can see the pain, confusion and denial in my teenage behaviors. She knows much better than I do how I feel. But Ellie knows she can’t push me and that if she did it would do no good, that I’d shut off and stop coming over. But she wants to help me.
I look up after managing to get my left sneaker untied and see her eyes. They give me a pain-filled look. A look that says “I ache for you. I know what is to come and I ache. I know not how to ease your suffering or prepare you for what you will feel.”
All I feel is pity and the awkwardness of the moment. I look away more frustrated than before and try to pull of my remaining shoe without untying its’ laces.
“It must be really hard” she says hesitantly as of she sensed my increased frustration.
“Yeah, well he is in good spirits which helps” I respond as my shoe pops off and I toss it into the heaping pile of shoes and coats beside their stairs.
“Is Sean upstairs?”
“Yeah, I think he is reading”
“Thanks,” I respond as I scamper up the stairs hoping to avoid anymore questions.
I had a very difficult time talking to my friends parents while my father was sick. I knew their questions and concerned looks were of the best intentions but I couldn’t stand it. I think part of my frustration same from my own lack of understanding of my father’s illness and his impending death. I didn’t really know much about the disease even though I did a poster project about it in health class as an 8th grader.
I also didn’t really know how my dad was doing. Maybe I was just an exceptionally bad communicator as a young teenager, maybe I just didn’t ask enough questions or maybe my father’s positive attitude deterred me. Whatever the reason I felt very uninformed about his illness, its progression and “how he was doing”. Since his attitude was so cheerful most of the time and upbeat I couldn’t really gage how he was feeling or if those feelings had changes much.
I could only watch as his body morphed and thus could only explain to friends’ parents how he was doing in terms of what new gadget he had gotten to ease his bodily degeneration.
Looking back now I think my friends and their parents who knew me well wanted to know I was alright. Since I never spoke about it unless asked they felt the need to ask. I also think my frustration towards their questions was really my frustration and guilt of feeling like I was unable to answer those simple questions Ellie asked me.