When I am honest with myself and slow down, I realize that I have a disability.
Narcolepsy, jaw pain, and Raynaud’s disease limit my ability to cope with life everyday.
Without medication, I cannot drive. With medication, I still have to be very careful and aware of my narcolepsy symptoms. Going on long car rides alone is something I strongly avoid. I think the longest I’ve driven on my own was 2.5 hours, and I am often afraid to drive more than a half hour without having caffeine in my system.
When I am not medicated, a person without narcolepsy would have to stay awake 48-72 hours to feel the same level of sleepiness. Even though I now take medication, I can still feel like I haven’t slept for 42 hours on bad narcolepsy days.
I know that number of hours may sound shocking, but it fits my experience. I remember the amount of energy I had before I had narcolepsy. The change when I developed narcolepsy was dramatic.
I have a disability, and I want others to know that. I sometimes hate how invisible my symptoms are. I want to help the people in my life know what narcolepsy is and what living with it is like. I want people to ask me questions about it and to show they care about my disability.
Ultimately, I want to be known and loved as a person with a disability. If you are reading this right now, let me be clear. This post is an invitation, and the invitation goes beyond me.
The invitation is to learn how to fully love someone with a disability. It’s not an easy invitation. It takes courage and humility, but I want to invite people to love me and others in that way.
It’s okay if that invitation feels scary, because I am scared too. Living with a disability has made me feel ashamed, judged, and as if I’m not enough more times than I can count. My loved ones have gotten angry at me when I’ve spoken my needs. Disabilities are inconvenient, difficult to understand, and frustrating.
But I need love the most when I feel inconvenient, difficult to understand, and frustrating because of my disability.