After battling PANS for the past nine years of my life, I’ve been forced to grow up too quickly while being stuck as a child. I’ve had to mature to face up to my circumstances, but I’ve had to count on my parents to take care of me more than most others my age have.
At twenty years old, I’ve never held down a consistent, weekly job. I’ve never had a boyfriend. I’ve never gone on anything beyond a day trip with my friends without an “adult” present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young teenager.
On the other hand, I aged twenty years the night that my OCD first came on. I realized that your whole world could be turned upside down in one moment. I shouldered the burden of upsetting intrusive thoughts for six years without telling anyone. I learned what it was to live in constant pain—physical and emotional—and to go on in spite of it. I figured out how to overcome tremendous obstacles in order to graduate high school and eventually get accepted to my dream college.
As a result of PANS, I’ve gained a perspective on life that some people twice my age don’t have. After fighting this utterly debilitating disease, I’ve learned to not take life and health for granted. I’ve learned that our brains and minds are fragile—but that human beings can be unbelievably resilient. Not a day goes by without me thinking about how fortunate I am to be alive and (mostly) well.
The trouble is that being both young and old at the same time makes it hard to relate to others of the same chronological age. I can’t party and go places like my peers do, because I don’t have the mental energy, and I’d prefer to get a good night’s sleep. This is preposterous to so many people. Why should a twenty-year-old have a bedtime? No matter how hard I try, even when I feel great, I can’t just be carefree anymore. I feel old, because my experiences have stirred up the waters of worry and cautiousness about every situation.
At the same time, I feel childish and somewhat inferior for my lack of stamina and independence. I sent in an application for my first real job this semester, and it got accepted, but I decided that I couldn’t count on having fifteen hours a week to spare—and this while taking a reduced course load to accommodate my lingering cognitive challenges. So will I ever become independent? Am I always going to feel like a woman-child, reliant on my parents for everything?
I wish I could just be twenty. I wish I could grow up and be an adult. I wish I could get younger and not worry about my health.
3 thoughts on “Am I Twenty or Twelve?”
My darling girl/woman, I hear what you are saying and I can sympathize with your mindset. But I want you to know something. I am a mother of an 11 year old PANS daughter. I watch her and I hear you (love your blog, by the way) and I have often wondered how long this will go on and what her future maturity will be like from this. Having been crazy and wild in my 20’s, I can tell you that while it may seem fun at the time, it is very over rated. It added virtually nothing to the woman I am today. Yes, I had fun and many good laughs, but it is only one small part of becoming your authentic self. Also, this new found health is still very new to you. Give yourself time to heal. Yes…have a bedtime! That’s a good habit at any age. And most importantly, don’t EVER lose the 12 year old part of you! You have the benefit of being still fresh and un-jaded by the world, yet being 20 when you start venturing out and finding your wings. The maturity and gratitude you gained from your PANDAS experience is invaluable. You’re just coming out of your cocoon, with your beautiful fresh butterfly wings and exploring a whole new world. See the adventure in that! Go slow. Don’t be in any hurry. You will bloom beautifully. Be sure of that!
Noelle, thank you so much for such a lovely and encouraging comment! I must admit that I wrote this post when I was feeling a bit down. I think you’re right that in some ways, there’s an advantage to being un-jaded by the world while I’m twenty and finding my wings. I have a perspective that a lot of people will never have. But yes, it’s definitely going to take some time to adjust to being healthy and able to pursue all of the dreams I’ve had to put on the back burner for so long.
I wish you and your daughter all the best as you travel on your own journey to healing. Let me know if there’s anything I can do for you. And thanks for following my blog! 🙂