PKU Life: The Plight of the Advocate

It’s hard to believe the holiday season is already upon us. For some people, it’s a very difficult time of year, but for others it’s full of festivity. I think for most of us, December is like one very long day. We sprint through the month, going from party to party and trying to get all our shopping done along the way. But if we’re honest, many of us find ourselves panicking at the last minute, asking ourselves why we didn’t just get it all over with on Cyber Monday from the comfort of our own homes?

For me, this is a joyful season. It’s a meditative season. I try to make some New Year’s Resolutions each year, but to do that you first have to take some time to consider where you are, where you’re going, and where you do and don’t want to be in life. And given that I’m a film buff, it’s not surprising that I typically have such thought-provoking encounters while watching a movie.

When I think about my life with PKU, and my role as a PKU and newborn screening advocate, it reminds me of my all-time favorite film: The Fellowship of the Ring. It’s hard to describe how much of a fan I am of this film. And I’m almost ashamed to admit how many times I’ve seen it. I stopped counting at 13. I’m such a fan of movies that I specifically remember how I felt the first time I watched my favorite movies. In the case of Fellowship, it was Christmas Day in 2001.

My wife’s family has a tradition of going to the movies after opening presents at Christmas. Now, I had vaguely heard of The Lord of the Rings before this point. I had seen the trailer, but wasn’t really anticipating it. I had no expectations going in. But that first experience watching the film was just magical.

But all these years later there’s one moment that stands out. If you’re not a fan of Lord of the Rings, then here’s some brief context. Frodo the Hobbit has been given an enormous responsibility, one which he’s not sure he can fulfill. While he’s lamenting his situation, Gandalf the Wizard reminds him that everyone given a great responsibility wishes they didn’t have to fulfill it. Then he says, “All we have to decide is what to do with the time that is given to us.”

There are times that I wish I didn’t have PKU. Perhaps I don’t admit that enough. I try to be as positive of a person as possible, but perhaps in my desire to remain positive I don’t admit the things that lurk down in the depths of my heart. Sometimes living with a rare disease – even one like PKU that has good treatment – is incredibly difficult. It’s challenging. It’s frustrating. And it can be very lonely. When I feel this way I just want to withdraw into my natural personality. By nature I’m an introvert. I’m much more comfortable reading a book or playing a video game by myself than being in a crowd of people. And even though I’m a public speaker, there are times when I just want to be to myself, be quiet, and not have to talk about rare diseases, PKU, and newborn screening.

But if I’m honest with myself, in those moments I’m not simply trying to take a break and reenergize. I’m actually withdrawing because I’m frustrated with not feeling in control of my life. I can easily ask myself what it would be like if I didn’t have PKU, if I wasn’t an advocate who travels and speaks, if I was just able to be myself again and remain an introvert.

But then I think about Gandalf’s words: “All we have to decide is what to do with the time that is given to us.” As much as it would be easier to not have PKU, that’s not the life I’ve been given. I’ve been given this life, this set of circumstances, and these obstacles to overcome. All I can do is decide how I’m going to respond to the challenges I’m presented with.

For those of us affected by a rare disease, so much can be out of our control. We certainly didn’t ask for our or our loved one’s diagnosis. But if we remain focused on everything our life is not, and not everything that our life IS, then we can easily spiral out of control.