The passing of time sometimes means that life is easier if I just forget about it for a while. Sometimes, I just don’t want to think about Sjögren’s. After all, the life of putting on a smile can be quite fulfilling for a while.
Doctors’ appointments come about once every six months for check-ups, so that gives me some time to fade into the life of normalcy for a bit. I still take my medicine three times a day, I still field questions about my bloodless fingers, I still scrub my contacts every few hours, I still regulate my water intake, I still watch my dry skin crack with each degree drop in temperature, I still can’t breathe in the morning because of sinus problems, I still ache, and I still stress about getting stressed.
But these are all normal parts of my routine.
Rub your face. Worry about what you’ll feel like tomorrow. Close your eyes. Try everything you can to get comfortable. Feel the aches and pains that you’ve been ignoring all day.
So, silence sometimes just means that I’m learning to be thankful in this very moment. I don’t have to be thankful for Sjögren’s, although it certainly spices up my life. But I can be thankful in it. I’m thankful to be able to connect with new people and to share my story. I’m thankful that I try not to take any moment for granted because I never know what’s coming next.
When you ask me if I’m scared…of course I’m scared.
But, next time, consider asking me if I’m excited. There’s a lot more of my story to be told. There’s a lot more of my story to unfold. There are a lot of people out there who may benefit from it. There’s a lot of hardship in this world, but language allows us all to unite around shared emotions and experiences.
If I’m ever silent for too long, don’t ask me if I’m scared. Ask me if I’m thankful. Ask me if I’m excited.
Kudos to the Sjogren’s Syndrome Foundation for all they are doing for advocacy and awareness. When I am silent, others are tirelessly working to unite a community.
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