(Excerpt from speech)
So, in thinking about what I wanted to say today, I decided that I wanted to tell you what I wished someone had told me when I was sick. When I was dealing with PANDAS, I didn’t have someone to talk to who’d been through it and made it to the other side. But now, I can hopefully encourage some of you, show you that that metaphorical light at the end of the tunnel really does exist. And so, today, as briefly as I can, I want to share three things that I wish my family and I had known about PANDAS.
Firstly, this isn’t you. To any child struggling with PANDAS, let me tell you, PANDAS is not you. PANDAS is something no child should have to be burdened with, it’s absolutely debilitating, and as someone who’s been there, I know just how oppressive and heart breaking it can be to go through this. But what makes it so much worse, what’s even more painful than your friends and family, even your doctors not understanding what you’re going through, what’s even more painful than the world not believing that this even exists, is when you believe there’s something wrong with who you are. When you believe that you are problem. Guys, girls – plain and simple, this is a disease. It’s not you. It’s an illness that can and will be extinguished. So never believe those lies that you might hear, that there is somehow something wrong with you – I promise you guys, there is not, no matter how convincing those lies might seem at times. PANDAS is a sickness. And It does not define you.
Secondly, I want to tell you that life is still beautiful and still worth living to the fullest. And boy, I know this is tough to wrap your mind around when you are dealing with a disease that attacks your mind. But believe me, never fall short on hope and please, don’t even for a second forsake this blessing of life. It’s tough, painful, with some days being worse than others. I know. I’ve been there. But I also know life’s still worth living and you can still cherish each day that you are given. It begins with being honest to others and yourself about this strange thing called PANDAS, by finding people to talk to about it. By remembering those people who love you. And maybe you don’t think people will listen. But just look around you – these people care. And I promise that they, that we, will help you. We’ve got your back. And in time, if you haven’t already, you can come to love this gift of life once more.
Lastly, I want to speak to the parents. I know what it’s like to go through PANDAS. Frankly, you can’t sugar coat it – it’s awful. But I can’t begin to imagine what it has to feel like to be a parent of a child who is suffering like this. But I’m standing here today as a testament of hope. And maybe I’m not inherently special or inspiring, but I made it. I finished the trial, the race. And so will your children. If you have faith, if you are patient, if you continue to pour into your children as I know you do day after day after day – they will get through this. It will become easier – not easy, but easier all the same. Not but a few years ago, I was sick. Talking to my family was oftentimes just mentally torturous, going to church and singing was an ordeal, and I lived in constant, irrational fear. My very personality had been stripped away from me. There were nights where my parents had to stay in bed with me because I was terrified that I was going to kill myself, not because I wanted to, I loved life, but because even the thought brought me to that state. That’s just a glimpse of where I was at. But now – I’m an Honors student at Anderson University with a full tuition scholarship, thriving and living life with an all-star cast of friends. Which I think is pretty dang cool. There’s hope. There is a light at the end of this tunnel. And after all is said and done, this doesn’t have to define your child – but I promise you it will refine them. And they will reach great heights.
To all of you, thank so much you for being here today. It means a lot. This is the first step in making a difference and changing these children’s lives. Change is being ushered in like a flood because of people like you. And so for that, truly and from my heart, thank you.