Patience Can Be a Challenge

Life with Cerebral Palsy requires patience every day. I need help with activities of daily living. I have to consider other people’s lives when planning my day. I do my best to acknowledge my caregiver’s needs and my own.

Communication is essential. PCAs play a key role in allowing me to live independently. If I want to go to the grocery store or movie theater, I have to tell them. When I want to take a shower, we agree upon a time. Having a schedule helps avoid miscommunication.

Disabled people often have to navigate complex bureaucratic systems to live. Two years ago, I received a new power wheelchair. It took eighteen months. I was tired of waiting for my new chair. With every setback, my patience grew thinner.

The people who work for my insurance company have never met or spoken to me. I want to live life like any other 23-year-old. Durable medical equipment makes this possible. Without my equipment, I would be stuck in bed all day.

I am more than a letter of medical necessity or a diagnosis, yet that is how they see me. No letter can tell a stranger everything about my life. The whole process feels very dehumanizing.

Patience is key when you live with Cerebral Palsy. At the same time, gratitude is important as well. I am grateful for the support that allows me to live an independent life.

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