Remembering Who They Were Before the Disease

A caregiver's reflection on empathy, exhaustion, and holding love through illness

When you live with chronic illness, empathy stops being an idea and becomes daily work. This is what I've learned while caring for my mother, who has been living with chorea acanthocytosis for the past fourteen years.

Empathy sounds noble when people say it. But when you live with illness every single day, when it fills your house, your routines, your silence...empathy becomes something you have to keep fighting for.

My mother has chorea acanthocytosis, an extremely rare neurodegenerative disease...only a thousand or two cases in the world, maybe less. She's been living with it for fourteen years. I'm twenty-three now. This disease has been in my life longer than most friendships.

But before all of this, she was HER. She used to cook the most amazing food. Not fancy food, but food that felt alive, like her. She crocheted, she solved math problems for fun, she loved going to movie theatres, no matter how cringe the film was. If she had her health, we'd still be going to every bad movie ever released in the theatres, eating something new, something very dramatic every weekend. Maybe she would have taught me crochet and embroidery by now. Perhaps I would have been helping her review her students' math papers every Sunday afternoon. 

Every parent has flaws, but if she were healthy, she’d just be another ordinary, imperfect mom. And that thought breaks me because it shows what could have been, if not for this one cruel lottery of biology.

The Everyday Reality

People with chorea can get incredibly persistent. They develop performance anxiety, small compulsions, and this desperate and constant need to prove they can still do things themselves.

So my mom tries to walk, even though she falls every single time. Not once or twice, but hundreds of times. She tries to pick up and put away objects, even though her hands tremble and ends up breaking things. She insists on eating on her own, even if the food spills everywhere and I have to clean it up later.

She'll call my name again and again - "Sri, water… Sri, water…" a thousand times until I get to her. You can be brushing your teeth, bathing, or half asleep... it just never stops. It's constant. EVERY MINUTE. EVERY DAY.

And I'm not going to lie: it's EXHAUSTING. There are times you lose patience, times you snap, times you break down. You feel guilty. Then you try to be better. Then you fail again. It loops endlessly.

Seeing Through Her Eyes

When I was eighteen, I fractured my leg and had to rest for three weeks.

By day four, I couldn't take it anymore. I started walking around, breaking doctor's orders, just to feel normal. It sounds stupid, but the hardest part wasn't the pain. It was being dependent on someone else for everything. I couldn't even get a glass of water or go to pee without help. I kept thinking, "I'll do it myself," and then fell back on the bed.

That's when something clicked. I imagined my mother...not for three weeks, but fourteen years. Needing help to eat, to pee, to walk, to drink. Being told, "Don't move," when every nerve in her body wanted to prove she could.

How could she ever just "accept" her situation? She was independent for most of her life. And now she has to rely on us for everything. It isn’t stubbornness when she tries to do things on her own. It’s the human need for dignity and the urge to prove to yourself that you still exist in your own body.

That small moment of realization told me more about empathy than a lifetime of words ever could. It made me remember all the times I'd shouted at her for trying to eat on her own, or yelled when she made a mess on the floor. She wasn't being careless. She was just trying to feel like herself again.

Empathy Isn't Pretty

Empathy isn't natural. It isn't permanent. It's something you build again and again... and sometimes you lose in the snap of a moment. 

Some days, I remind myself every minute that it's not her fault. Other days, I forget, and I hate myself afterwards. I've learned that you can love someone deeply and still be drained by them. That's not evil. That's human.

And also, it’s not your fault for being tired. Caregivers are human. You can’t pour from an empty cup. An occasional conversation with a clinical psychologist or participation in support groups can be more helpful than people think. It helped me realize that impatience isn't proof of bad character. It's exhaustion. The kind that accumulates quietly until it explodes. Therapy gave me tools to pause before I spiral, to understand the guilt and break the cycle before it eats me alive. But unfortunately, I have not found any support groups for this disease yet, hence this blog. But honestly, I am glad there are fewer people out there suffering from this disease, and my heart screams for every single one of them, but I do not wish this kind of agony even for my worst enemy. 

Empathy isn’t something you have. It’s something you keep choosing, even when it hurts.

Remembering Helps

When I feel myself losing it, I think about the version of my mother before the disease...laughing, crocheting, arguing about math, watching bad movies and dressing up with heavy embroidered sarees and self-designed jewellery. That memory doesn't erase what's happening now, but it softens it.

It reminds me that she didn't choose this. That she would give anything to have our old life back. That she'd be helping me right now if she could.

And in that remembering, empathy feels possible again. Not as a virtue, but as a small act of love that keeps me from forgetting who she really is.

She wasn’t peaceful or easy to please. Her mind was always busy, chasing ideas, trying to make things better. Maybe that’s what I try to hold on to now: that spark of wanting more from life, even when life kept shrinking around her. Remembering that version of her doesn’t make the days easier, but it reminds me why she fought so hard to stay herself.