My name is Noah Siedman and I have been an older brother to two siblings for 20 of my 23 years. My younger brother Ben had a rare genetic disorder called Sanfilippo Syndrome, a disease that three years ago resulted in his death. I have spent a long time thinking about my brother; what he taught me, how I could best help him and how to honor his memory now that he is gone. I do not by any means have it all figured out, but I have found a few truths that have helped me understand and move forward. They are truths that have withstood all the hardship that I have faced.
The first truth is this: we are equal to the challenges we face, and we are stronger for them, if only so that we can face what the next day brings. As siblings, we deal in the “most we can handle every day”. We are called upon to be the most innovative we can be, to display the most patience we can muster, to be the most composed person in the room. We do everything right up to the very limit of what we can handle.
I tell you this truth with the assumption that at some essential level, you already know it. You have lived or are living with the most you can handle every day. Each day, you have faced challenges and overcome them. I bet sometimes it is years later before you even realize just how insurmountable an obstacle that you left behind. And, you know that while tomorrow’s challenges might loom even greater, you go to sleep with every intention of being their equal when you wake. That is what we, siblings, do.
I remind you of your strength – this knowledge that we are equal to the challenges we face because you will need it to do what I ask of you next – my second truth.
Stop being afraid. Stop being afraid to be angry. Stop being afraid of forgetting. Stop being afraid of getting fed up, of being sad, of giving up hope. As siblings, those fears are our constant companions. They keep smiles on our faces and give us energy to face each day but they also make us toss and turn at night and sow doubt in everything we do.
I spent most of my life with that fear; asking myself at every turn if I was doing enough; was I a terrible person when I lost patience with my brother or if I can’t remember the good. I saw what fear did to my family and friends; how amid all the love and support, the struggles and successes, we were all strung-up by the same tension, the same fear. Even today, three years after my brother’s death, I am still afraid of things so far beyond my ability to change that I cannot fathom why I let them remain tenants in my brain. That fear has planted itself so deeply that at times I even wonder if it was love and strength that moved me to be there for my brother or fear.
I think we live with that fear for so long that we question everything. But I know this. Fear of being angry becomes resentment. Fear of forgetting becomes dependency. Fear of failure leads to avoidance and fear of losing hope becomes apathy. These things are so much worse than their causes and so much more avoidable.
I don’t suggest that you embrace these emotions because they are not so bad as you think, but because each moment lived without fear is one where you are in control. Every second you regain from fear is one you can spend however you like. It is the time where you can make meaning and grow, where you can make memories that you will never lose. As siblings, I think that is our real battle, not the everyday challenges of living with a sibling with special needs but this internal one.
I implore you to never forget that you are equal to your challenges, and to always know that the enemy of happiness is not hardship, but fear. I don’t doubt that this advice is hard to hear and even harder to follow. Know that you have already proven that you have the strength to do it and that each little success makes the next come easier.