Every time we leave my parents’ house, it happens. We’re driving home in the dark; my children are laughing in the back seat. I’m trying to remain strong and act somewhat normal, but the sadness intensifies as the anger feverishly boils deep inside of me.
My thoughts silently race in 20 different directions as I try to make sense of my feelings, but I can’t. So I cry.
It’s been nine years since my mom was diagnosed with Parkinson’s. You’d think that, by now, time would have healed some of the ache in my heart, and that I would have found ways to cope with being an adult child of a parent with a life-altering illness. But it hurts terribly.
I often look back on my mom’s life before Parkinson’s showed up like an uninvited guest. I think of her laughing. I think of her dancing with my dad. I think of the pretty lipstick she wore, watching her curl her hair, and the way her perfume stayed in the stairway long after she’d left for work. I think of her silliness, and our talks that touched on everything about life and the dreams she had for our family.
All of these things are gone, forever. It’s an immense grieving for someone who is here but also, in so many ways, no longer here. I miss her, even when she’s sitting right next to me.
When I attend services at synagogue, I stand as the rabbi invites the congregation to recite the Mourner’s Kaddish. People around me quietly announce the names of loved ones who have died. I say the prayer and reflect on my mom’s life. My mourning is different, I know. A death? No, not quite. But still I grieve for the life she had, for the lives we all had.
Honestly, I don’t often feel a strong connection to Judaism; I’m more comfortable identifying with the elusive realm of “spirituality.” But there’s something almost meditative about the Mourner’s Kaddish — something that transcends Judaism. Maybe it’s because — if only for those few moments — I know others stand beside me in unified sorrow. For a short time, I actually feel like God might be with me, because lately I don’t know what I believe in anymore, or if I even believe at all. I doubt and question: What kind of God would place this pain into our family? Why would a loving God hurt such a beautiful and selfless soul?
These feelings are isolating — this disease is isolating. Friends have no idea of how it has changed me as a mother and a daughter, how it has shifted our roles. I miss being able to call my mom to talk about seemingly ordinary topics like my kids’ report cards or why my chicken soup tastes so bland. I feel like I’m navigating the role of motherhood entirely on my own, longing for the guidance and reassurance I know my mom would have provided.
I’m envious of friends whose moms can actively participate in their grandkids’ lives; I’m heartbroken my dad is now responsible for every aspect of my mom’s care. I’m devastated that my kids have to see my mom overwhelmed by the simplest of daily tasks. And sometimes, I’m just so angry.
Most people don’t have a solid understanding of Parkinson’s. They know my mom is not well and that she needs continual care, but they don’t fully grasp what the disease looks like. Parkinson’s isn’t “just” tremors. It is dementia and panic attacks. It’s depression, anxiety, and apathy. It is nausea and sickness from medicine — lots of medicine. Parkinson’s is humility. It is cuts and bruises from falling. It is countless visits and phone calls with doctors who have no real answers.
Parkinson’s is terribly cruel. It has busted down the door and shaken the foundation of our family so viciously, and it has settled in forever. This is it. This is what we have now.
Every few months my phone rings, and “Mom” shows up on my screen. “Oh. Hi. Who is this?” she says. “I think I dialed the wrong number. Did you call me?”
“Mom, it’s Alyssa,” I respond. “You called me.”
“Oh, God. Sorry. I’m all confused. I’ll talk to you later, honey. Bye.”
The call length registers as just a few seconds long, and I have to stop for a moment or two to compose myself and get back to my life.
These are our phone conversations now — but it’s a lot to me. If my mind and heart are in the right place, there is even gratitude: I’m grateful I can still hear her voice, that we can still talk to one another, even if our conversations are nothing like they used to be.
And perhaps that’s what I must choose to embrace as the lesson in all of this: My mom continues teaching me, even now. I’m learning patience; genuine patience. Feet that struggle to walk can only go so fast. We get to where we’re going slowly — but we also enjoy the walk together. Sometimes she leans on me when those few steps are too tiring. So I’m learning to support her; just to be there and to be present. Her slowing down has slowed me down, and perhaps my mind and body needed this rest, too.
In these moments, I realize her illness hasn’t taken everything — it has tried, but it can’t. It can’t change the tenderness I feel when I help my mom into bed, or smooth her hair, or feel her face on mine. It can’t be part of the joy she has given me, or the strength she has shown.
More than anything, Parkinson’s will never have the power to touch the truest love she has given me, and to all who have been lucky enough to know her. Her life is, and always will be, the greatest blessing to mine.