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.

A Tiny Change of Heart

All I saw were tiny feet.

A juxtaposed image of tiny feet on a too large hospital gurney being wheeled down the halls of the children’s emergency ward.

A hospital gurney being pushed by a nurse who looked fresh from college, and a young mother, clutching a colorful bookbag, belonging to the tiny feet covered by a blue baby blanket.

Tiny feet that belonged to a tiny human, an infant, a baby. A baby with a breathing tube in it’s nose. A tiny nose belonging to a tiny human with tiny feet that was in the emergency ward at the children’s hospital at midnight… just like I was.

I’d been at the ER for seven hours. I’d come for suspected appendicitis. I’d received an IV for severe dehydration, and on the way to receive my x-ray, I walked past those tiny feet.

Tiny feet that couldn’t walk yet. Tiny feet that belonged to a tiny nose, belonging to someone with tiny eyes that were closed - all too peaceful, almost normal - except for that image etched in my brain of those tiny feet hooked up to the IV like I was, hooked up to a breathing tube, receiving an artificial breath helping those tiny lungs succeed.

And a sob escaped my lips before I could control myself.

Here I was, seventeen, in the emergency room as a “high risk” patient because of my recently diagnosed lupus, my arthritis, my fibromyalgia, my celiac disease. I was sent directly to the children’s hospital in the off-chance that I was admitted, and I spent so often crying that evening, from self-pity and fear.

I’d walk down those halls on the way to my x-ray with my IV in hand, with so much despair.. but I’d passed those tiny feet.

Those tiny feet that are etched into my mind.

Tiny feet that are hooked up to tubes. Tiny feet that haven’t had a chance to live yet. Tiny feet with tiny dreams and a tiny heart that haven’t had the opportunity to thrive yet.

I’ve spent so much time pondering those tiny feet and wondering why that baby was hindered in that way, I’ve spent so much time wondering why that baby hasn’t been given the chance to live yet.

And it makes me think.

It makes me think about how lucky I am to be seventeen.

It makes me think about how lucky I am to be struggling with chronic illnesses in my joints.

It makes me think about how lucky I am to be breathing easy.

It makes me think about how lucky I am to be alive.

I have been struggling a lot lately about my lupus. It still is something that completely defeats me. And being in the ER on Saturday, gave me a scary preview of what could be in my lifetime. That realization hit me like a ton of bricks, and I moped as I walked along with my IV attached to me, and then I saw those tiny feet.

Those tiny feet that have given me a wake-up call. Those tiny feet that have reminded me that even when I’m sick, I’m not the sickest.

And by all means, I understand that I am not the healthiest. I know that I am not even close to being a normal teenager, but at the same time, I’m not the sickest. I’m not suffering the most. I am okay, I am really okay.

It’s difficult to put it into perspective. I cannot describe the amount of guilt that washed over me when I realized that I was in the emergency room for dehydration, while children were fighting for their lives in the same corridor. I felt so pathetic. I am so pathetic.

The x-ray technician had to run because there was a trauma case that came in, and I have been so guilty ever since. I am so wrong. I have wronged so many people in my pity party.

I know that I feel so sick, and I am so sick. Who I am, is a teenager with lupus and celiac disease. I am the “bless your heart” comment I received in the urgent care when listing off my diseases. I am this little girl who has an equivalent amount of struggles as someone twice my senior.

But what I am not?

Tiny feet with breathing tubes in it’s tiny nose.

I am so much luckier than I think I am. I am so much more blessed. I could be worse off. I need to stay true to who I am, and I need to stay strong. I need to stay brave. I am so alive, and I need to live like it’s real.

Because these big feet are made for walking. These big feet are made for living a good life that those tiny feet may never get the chance to.

And that’s how I need to live my life.

behind the scenes

You asked me if I’d recently gotten my wisdom teeth out.

It was innocent enough. It wasn’t malicious. It was just an observation. An observation that reminded me of an ugly facade I wear. A simple gesture that proved to me that my struggle was no longer invisible - that it was now obvious that I was different.

I had been living under this falsified reality  that the new medication wasn’t affecting me externally. I thanked my lucky stars that internally, I was receiving only positive results, but I guess all good things have to end somewhere, right?

I’d been sensitive to the changes. I’d noticed the ten pounds I gained, the acne, even the rounding of my face… but I just didn’t want to accept that they made me any less beautiful. My new normal included a speckled moon-like face. It’d taken me so long to finally accept that feeling normal meant giving up looking it.

And it hurt.

When I went prom dress shopping, I was embarrassed to learn that I’d moved up a dress size… Even two, in some dresses. I’d looked in the mirror in those beautiful ball gowns, and I just couldn’t see the beautiful girl that everyone else claimed to see. All I saw - all I see - is my struggle.

My “new normal” is bittersweet. My “new normal” is ugly. My “new normal” is unforgiving. My “new normal” is taking more medication than I ever have before. My “new normal” sucks.   

My “new normal” is grief-induced depression and insecurity that plagues me.

I want to feel normal. I want to look normal. I want to be normal.

I don’t want to be sick. I didn’t ask to be sick. I would never wish this on anyone else.

And I know, this is beyond petty, and I know I’ve begged others to never give up. To look their burden right in the face and claim victory, but it’s harder than I ever could’ve fathomed. It is so hard to give up everything that you were so proud of, all while trying to accept being diagnosed with something so ugly and unforgiving and defeating.

I am trying so hard to be brave but it is so difficult right now. My hair breaks so easily that I am afraid to put any heat to it. My face breaks out so badly that I’ve been prescribed antibiotics to clear it up. My feet turn purple when they get too cold. I can't be outside in the heat in the sun because I have to be afraid of flare ups. I can hardly sleep, and when I do, I have dreams about dying because I’m suppressing my fear when I’m awake.

It is so difficult to tell all of my doctors about this stupid diagnosis because everyone pities me. I now have the stupid disease that everyone thanked God I didn’t have. I have the disease I was told to feel lucky that I “didn’t have”. I have to go to a doctor for the rest of my life, every three months to receive blood work so that I can be sure I’m only feeling it in my bones and that it's not destroying my organs. I have a 9 o'clock bedtime right now because my body can’t handle the “new normal” energy it has.

I’m seventeen years old and I can’t even sleep in my own bedroom because I’m too scared of being alone. My “new normal”, my “sickness”, everything that I now am literally sucks. I don't want to be me.

I lied when I said I was brave. I am not strong. I am so weak right now and I am so afraid. I am more afraid than I’ve ever been before. Everyone has told me to move on, but I just can’t. I’m in the middle of a hurricane that is never-ending. I’m a ticking time bomb. 

I am so afraid to die. I want to be normal, I want to live a carefree life. I want to be normal.

This was me before I was diagnosed. I was so proud of everything I was. I loved my hair, my smile, my dimples, even sometimes the pale nature of my skin. I was proud to be that girl.

And now, I just wish I was as beautiful as before. 

Much love,

Jess