My grandfather had Parkinson’s disease. He died when I was 11 in 1986. I remember how angry I was and thinking he didn’t deserve it. I still don’t think he deserved it, but now I know how silly that idea was. No one earns an illness. I remember him completely immobilized. I remember the stone face. I remember going on a walk with him in his wheelchair and my dad pushing. I carried my favorite Cabbage Patch doll. His disease and death were my first exposure to mortality and futility. I was young and healthy and couldn’t imagine why everyone else wasn’t the same. I would pray at night that nothing like that would happen again to my family. I would ask God to take me first because I didn’t want to stand by helplessly while a loved one suffered.
I decided that I would become a physician one day. I wanted to help sick people get better. Maybe I’d even get to cure Parkinson’s disease. Then life happened. Here I am 25 years later divulging my childhood dreams to anyone who will read it. In my dreams, I would become a medical doctor. In real life, I’m becoming a doctor of pharmacy. It’s a long story how that came to be. I’ll tackle that later. For now, let me get to the point of this blog.
I am a woman.
I am a daughter.
I am a wife.
I am a mother.
I am a student.
Life was going pretty smoothly until I found out a few months ago that I have Multiple Sclerosis. My whole world crumbled. I know it’s not a death sentence, but every envisioned landscape of my life was obliterated. Questions and doubts washed over, around, and through me. Have I wasted all this time and effort and money in pharmacy school? Will I be able to care for my child? What will this do to my marriage? Imagine standing in a nuclear wasteland. Everything knocked flat. The shock freezes time. No sound but quick and shallow breaths. Then my love appears with tears in his eyes, and my sweet boy is gazing up at me. They need me. I need me. That dream where you can’t scream out for help. It felt like my life was over. Every bus ride to school, I watched people walking and talking and standing and reading. I wanted to shake them and tell them to pay attention. Pay attention to your health. Don’t smoke that cigarette. Don’t drink that soda. Wear a helmet on your bicycle. Don’t destroy yourself.
While writing this is intentionally self-indulgent, it’s not the only purpose. With this blog, I’m looking to support and be supported. I want to share my story so that maybe it will inspire me and others with the same disease to stay strong and positive. I want to explore my life and find the beauty in it. Mostly, I don’t want to be alone in this. If I don’t let it out, I’m afraid I’ll disappear. I’m afraid of living in emptiness. There’s a compulsion like an undertow that keeps telling me to keep it secret like I should be ashamed. Even as I’m typing this, I’m wondering if I should ever publish it. Reaching out, on the other hand, feels right. Here goes nothing.