Yesterday I was rewatching an episode of Ozark and, Buddy, one of the characters said, “…because when you think you are going to die yesterday, today is sweet.”
Here is why that hit home: Two nights ago, I had a mental breakdown. I questioned my chronic illness. I questioned why I must dedicate every night to dialysis. I questioned why I haven’t received a kidney transplant.
I don’t remember much of who I was before being diagnosed with lupus at 22 — what my body looked like before the stretch marks and catheters and swollen face. What my life looked like before hooking up to a machine. Living with an autoimmune disease can often feel like I was going to die yesterday. Living in this body is a grieving process. Who was I before the catheter was taped to my tummy? Who was I before my skin stretched and the fatigue grew? Who was I before the trauma came up for air? Who am I now?
I perform dialysis every night, and if I miss too many treatments I would not have much longer to live. I am essentially on life support. That is a lot to constantly wrap my head around.
As part of my medical plan, I have to sign an advanced directive, a document that states my wishes in case of death. I am 30 and have to state my wishes in case of death. I am 30 and should be out there making mistakes on a skateboard or marathoning The Bachelorette or twerking in the club. Instead, I must consider the end of my poem before I am done writing it, living it.
I do not know how to process everything my body holds. I do not understand many things about this illness, but today is sweet. Today is a call from my grandma. Today is sisterhood and a Gwendolyn Brooks poem. Today is being tossed in the ocean, my baby sister turning 15, a sip of watermelon juice, messages from you…
Today is a call from my social worker saying I am finally on the transplant list. I have waited for this news for several years.
Some days are harder than others, but the healing does not stop. Healing is remembering the Christmas I spent in a hospital gown. Healing also looks like the day you can’t get out of bed. It is the good news waiting for your name. Healing is catching a wave and then wiping out. It doesn’t make sense, but we hold on.
I hold on for the good days. The ones where me and my friends laugh at everything, or my little sister starts high school, or when my kidneys don’t hurt and the lab results don’t suck.
For as Lucile Clifton so perfectly stated,
with me that everyday
something has tried to kill me
and has failed.
So, I will celebrate. The lupus didn’t kill me. I will celebrate. The kidney failure didn’t kill me. I will celebrate. The depression didn’t kill me. I will celebrate. The heartbreak didn’t kill me. I will celebrate.
Today is a sky with my name on it because despite all the hell I am going through it will not destroy me.
Today is sweet — not perfect, not resolved. It is sweet like the diagnosis did not kill me. It is sweet like the depression will not keep me. It is sweet because I have waves to catch and poems to write and love to receive and friends to make and community to support and sun to bathe in and laughter to have and life to live. Death can wait.
To anyone who thought they were not going to make it yesterday, let today be sweet.
And as always, I love you, I see you, I am so proud of you.Leave a Comment
Sylvia Heed says
Thank you. This is exactly what I needed to hear and now is exactly when I needed to hear it. Bless you.