A Sailboat of Courage

It’s been almost two months since my lupus diagnosis.

That means I’ve had two months to process everything and to let it sink in. That is two months to finally let go of this grim diagnosis and to allow myself the chance to live, despite this minor setback. It’s been two months and I’ve had enough time to grieve and it’s time to move on.

But for some reason, I just couldn’t.

It was a lingering thought in the back of my mind. A small voice that whispered “lupus” over and over. I tried so desperately for weeks to try to move past it by googling information about it, and ended up finding stuff that upset me more. Things about lupus like: “one of the most mysterious, devastating, and cruelest diseases”, “contributing to cancer”, or my personal favorite, “the leading cause of stroke-related death in women.”

And for a while, I thought that I wasn’t able to move on because I was so afraid of dying. I’d spent so much time afraid that this would be my demise, that I had myself convinced that I was selfishly holding onto this diagnosis because I was afraid of dying and not being able to fully live my life. I’d become obsessed with the fact that I potentially could lose my chance of being someone normal.

Everyone just wants to be considered normal.

So in this constant state of self-pitying, I see a counselor to help with my grief.

And as I was waiting in the waiting room before my most recent appointment, a boy talked to me.

He was about my age, however, his mental age was much younger than what his body suggested. He saw my glasses and informed me that he needed some. We had a brief conversation while his mother tried to hurry him along, she seemed concerned that he was bothering me. She relaxed, however, when she saw that the conversation was mutual. He told me his name and asked for mine. He asked me never to forget him.

His mother smiled at me as he ended the conversation - a sign of appreciation from someone who has probably seen reactions not quite so welcoming of her son’s open nature. As they left, my spirit was so lifted. I was so incredibly happy.

So when I saw my counselor, we walked through things that made me happy.

I told her about the brief encounter with the boy in the waiting room.

We talked about a little boy with a small processing disorder who came into work asking for a t-shirt to be made with his favorite cartoon character on it. A little boy who I was so glad to help - who gladly talked me through the different colors for the shirt and gave me a lesson on how to spell his name. Someone who was glad to write out all the paperwork for me because he was proud that he could.

We talked about the Instagram accounts of children with down syndrome that I follow who brighten my day with their personalities and smiling faces. The little girls with big smiles and curled eyelashes who sing while standing on tables or suck their thumbs; those little faces that brighten my days simply with their smiles.

We talked at length about how excited I was to work with them. We talked about how I was incredibly thrilled to be given the chance to spend my life bettering theirs. That’s however, when I broke down. I expressed that I had a fear of dying before I could fulfill this dream.

And now I realize it wasn’t so much so merely a fear of dying, but instead a fear of dying before I could help others live.

I recalled how I’d become obsessed with the ideas of service projects. I’d become obsessed with finding ways to help others and to involve myself. I’d researched service groups at the University I’m attending. I’ve been trying to figure out different ways to help people even in the smallest of ways. I want - so badly - to make some kind of impact. So much so, that very recently, I’d become interested in the concept of creating crocheted stuffed animals to donate to children’s hospitals or fire stations. Small, small things.

Because now I realize that I’m afraid of never making the impact I’m convinced I’m meant to.

I’ve set my heart on working with special needs kids, traumatic brain injury victims, and survivors of abusive situations. I want to help others achieve the lives they are meant to, so badly. And with this lupus, I’m afraid that somehow, it’s going to stop me.

I don’t want fame. I don’t want to make tons of money. I just want to help an autistic child have a fluid conversation with his/her mother. I want to see a child survivor of abuse blossom out of their induced shell with a new family. I want to see a brain injury patient smile again or hold a followable conversation because of months of practice. I want the tears and hours of moving through obstacles to achieve a small goal that is monumental in the lives of those who truly matter. I want that insurmountable joy when something goes right.

I want to go to graduate school to work myself tirelessly to obtain a doctorate in PhD just to be able to work with those who need me most. I want the debt. I want the hours of studying, and the tests that seem impassable.

I want to be able to say that I reached my own goal of helping others get to theirs, but right now, I’m scared that lupus will be my own obstacle to get over.

The only thing is, when I think about that boy in the waiting room, or I read about children who’ve been given a second chance at life by a doctor who believed in them… I know that I need to be that advocate. I know that things are going to be tough, but something within me is begging me to persevere through it.

There is something within me that is begging me to know that I’m a future advocate for children who need a voice. One day, I’m going to be the fire that lights a path for a mother who has felt she needs to give up - I will be a vessel for success in children who’ve been anticipated to sink.

Lupus may be my anchor, but my sails are set with the wind, and I’m ready to cut the anchor loose.

Love, passion, and determination will get me where I’m going. There is no time for failure in the clock of my life.