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Remembering the Stars in My Life With a Progressive Rare Disease

by Naomi Eby

Several years ago, I was diagnosed with a rare genetic disorder. It explained health issues I was experiencing, such as difficulty controlling my weight. It also made my family and me aware of other problems I might encounter later, including how my vision will decline, perhaps before I become an adult. If a cure to the degeneration is not found beforehand, eventually I will become blind. So far, I have been blessed, and the deterioration has been slow, but at this point, I have lost some central vision in my left eye and most of my night vision in both. These beginning stages of vision loss have made me realize how much of life many people take for granted, and how I need to do a double-take on the discontentment in my own life.

The¬†first¬†time I had to come to terms¬†with¬†losing¬†my vision¬†was six or seven years ago,¬†in a¬†dark¬†parking lot after a nighttime event.¬†My mom, being the nature lover that she is,¬†glanced¬†up at the sky and saw that it was¬†clear¬†that night.¬†“There’s Orion!‚ÄĚ she exclaimed after¬†a moment¬†of¬†admiring¬†the beauty up above us. Oddly enough, I had trouble finding it.

‚ÄúWhere?‚ÄĚ I asked, confused. We had admired the constellation at length before, and it was not up there.

‚ÄúIt’s right there,‚Ä̬†she insisted,¬†waxing eloquent about the black above.¬†I had begun to lose my¬†night¬†vision, but it¬†had¬†gone¬†so slowly that¬†we¬†had¬†not¬†noticed.¬†I had always seen the stars, but gradually, they had disappeared one by one from my sky.¬†I realized then that, while I knew I would lose my¬†vision,¬†I had taken seeing things,¬†really¬†such a wonder of life,¬†for granted. Now,¬†I¬†intended to treasure every moment.

Naomi standing by the beach.

Though I was brave,¬†until four years ago in 2017, I had¬†difficulty¬†dealing with the pain the knowledge of¬†my¬†loss caused.¬†That summer, we¬†went on vacation in Colorado with my mom’s side of the family,¬†renting¬†a cabin in the mountains.¬†While the aim was¬†just enjoying¬†each other’s company, we all wanted to see how many stars I could see without light pollution.¬†We tried¬†after¬†dusk, when everyone testified¬†to our¬†view, and I saw more¬†stars¬†than usual. I was pleased, though a bit jealous of everyone else. Then my mom and I¬†went¬†out at 3:00 a.m., and there were even more, but I was still disappointed.¬†However,¬†I¬†was grateful¬†to even get that view,¬†and¬†from then¬†on,¬†I began to¬†try to¬†be thankful for¬†what¬†I had¬†in¬†life, instead of¬†dwelling on¬†what¬†I did¬†not.

Then, two years ago in 2019, we all went on vacation again. This time, we rented a cabin on a private lake in Wisconsin. One night, just after dusk, we all went out to see fireflies. Someone looked up, and soon we were all awed by the amazing sky we got to see. I say we because, incredibly, I was able to see most of it too, including with a little guidance, Cassiopeia, the Big Dipper, the Little Dipper, and even part of the Milky Way! I did not want to leave, even after everyone else went inside, so my mom and I sat outside for 20 minutes, me tearing up every time I caught sight of another dim pinprick. I was incredibly blessed to have those minutes, and now, every time I find myself wishing for something I do not have, I remind myself how I did get something I should not have had, and it was amazing.

I still experience challenges¬†arising from¬†my condition,¬†and, if treatments are not discovered,¬†I¬†will the rest of my life.¬†However, if I¬†could do life over again,¬†I would not choose to¬†have¬†never had¬†this¬†disorder,¬†because¬†it has¬†provided¬†a¬†unique and valuable perspective on life.¬†It has made me see how everything¬†people¬†take for granted¬†can be¬†a blessing and a miracle,¬†and¬†it¬†should be thought of as such.¬†It has also taught me that even¬†though I,¬†like everyone else,¬†have my struggles, I still¬†have¬†things¬†to be thankful¬†for. Finally, it has helped me learn¬†not to be discontent with life, because there are so many¬†unexpected¬†blessings¬†one¬†does¬†get.¬†Just because one is born with a genetic condition does not mean¬†one will be miserable,¬†if only¬†one¬†can¬†remember¬†the stars¬†and¬†not¬†the¬†doctor’s visits.

Image Credits: Katherine Eby

Getty image by M-Gucci.