Today, the 11th of May, is my birthday. Today I will be 28 years old. Every year, my mother tells me about the day I was born and how it was 30 degrees Celsius then. I wonder if that’s why I dislike hot weather, haha. Anyway, my birthday is always a fun day that I love celebrating with friends and family. This year however, with the foundation up and running, I figured it would be a great day to reflect on some things.
Reflection one: We live in a very different age now than before
Okay so this one might be obvious, but I would like to tell you all about it. When I first got the diagnosis about PTBHS, the University of Washington brought my attention to a Facebook group which was made to support parents of children with PTBHS and connect them. And you know, I was born in 1998, so at that time Facebook was not a thing. If I would have gotten the diagnosis back in the day (which didn’t even exist, but let’s say for this example it did) there would be no support group, no Facebook, no international connections at all. It would feel even more lonely.
We can be grateful for the way we are able to communicate with one another today!
Reflection two: I have grown a lot in finding my own path
Growing up I always wanted to be like everyone else. I even copied people’s behaviors so that I would fit in with them. The only place where I could be me was in my own home. However, over the years I let go of this weird idea of being likeable for everyone, and I figured that people should like me for the real me. The real me with my own limitations when it comes to energy levels, the real me when it comes to my sense of humor. I might not do things like everyone else does them, but that is OK! I am myself and I love myself!
I have let go of the idea that I should be able to do the things regular adults can do. Hold up a job for 40 hours a week, work out several times a week, be able to go out until late. That is just not something I can do. And you know what? After many years, I am finally fine with that.
Reflection three: The psychological aspect of having something super rare should not be overlooked
This blends in with my previous reflection but I believe this to be very true. When I first got the diagnosis, it became my identity. It was all I could talk about and I kept telling people about all my struggles. Don’t get me wrong, it is important to let people know when something is bothering you. But I forgot that there was an actual person living with the diagnosis. I am Alissa first, and I HAVE Poretti Boltshauser Syndrome. But Alissa comes first, and people see ME first. It struck me that I forgot who Alissa was. Well, let me tell you!
I am a strong woman, who is caring and kind. I want to help people whenever I can. And I am also very funny. I love to cook, and do logic puzzles like sudoku or tectonic. I like cozy games like Animal Crossing and Stardew Valley.
And after that, I also have a syndrome called Poretti Boltshauser syndrome, which makes me struggle more than the average person. But that does not define me. It’s just a part of who I am. Just like everything mentioned above! When you look at who YOU are first, you can build up self confidence that helps you conquer your struggles with PTBHS!
Conclusion
Today I got a little older and maybe a little bit wiser, but nonetheless I keep on learning and growing as a person. I don’t believe any person is every done learning. Right now, I am learning how to have my own foundation with a team of lovely volunteers. Today I am grateful for everything that I have.
Until next time!