An Open Letter to Scary Things

My grandma and grandpa in Michigan had an old basement from the early 1970s with classic wood paneling. There was a make-shift beauty parlor in one room, and a train storage room in the other. I had my little toy corner, which mixed with my grandma’s “modern” gaming system. Notably, the blurred glass windows that were nestled near the ceiling of two of the rooms didn’t source the light well in the basement. Hence, when all of the lights were off, the basement was transformed into a dark cave. My fear of the dark originates from that basement. However, as the lights flickered on, my fear of the dark dissipated in the last racing heartbeats that echoed throughout my throat.

I am coming back from hiatus to announce a new chapter in my life. This week I began medicated blood infusions for my Crohn’s disease. I will be clear. I am getting blood treated with a medication to combat inflammation in my gut. I will have the IV in my arm. As I scattered this new chapter in my life, it came across to people as something that I was either researching or administering on other people. I cannot blame them. I look perfectly healthy. The pep in my step still kicks high on a Friday morning lecture. Even so, the invisibility of my Crohn’s has masked the profound transition transfusions have on my life and journey of disability.

I know little of what I should expect when I go in for my transfusions.

The principles of the medical procedure are simple. The medication developed through advanced technology is enticing to learn more about, but I cannot bring myself to read any of the papers. I have not looked up any of the side effects of the medications. I like organic chemistry, so perhaps there is a cool mechanism I could appreciate and learn something from.

As you can tell, my thoughts are winding in a valley of the unknown. I hope to track my thoughts and feelings throughout the infusion process. I will bring my journal, but will I be able to pick up a pen and write?

I would like to use my YouTube channel as a platform to share my experiences with the process of getting a transfusion. My intention is to normalize the life of a person living with chronic illness. This may not happen at the first appointment, but I know in time it will come.

As I sift through my poetry, books, and art, I am attempting to express how I feel through others' descriptions of the world around me. Kay Ulanday Barrett offers us a perspective on our body in their poem, “More Than Organs”. They write, “A person is more than organs, more than skin cell flecks / on bed sheets when your whole Monday is fading / away, out of breath”. The presence of my body and mind is a crucial facet of the medical process. Nonetheless, I feel disjointed toward this connection, should it be harmonious? Barrett’s work is humanly simple, but is simplicity the answer?

Brene Brown offers an adjacent perspective in the Rising Strong Process in terms of the “reckoning”. Brown describes walking into our story to “recognize emotion, and get curious about our feelings and how they connect with the way we think and behave”. I am curious about the emotions surfacing because of my infusions. I am not sure I am all that ready to encounter my emotions. I have noticed how my emotions have been skewed by the thoughts swirling around my infusions. The uncertainty is draining. There is a reckoning to be had with these emotions I feel. Could I delay that process? I wonder what Brown would say…

Lorca brings the spirit of the ultimate betrayal of the body to life in their poem The Cheating Mirror.

“Green branch barren

of rhythm and bird.

Echo of a sob

with no pain or lips.

Man and Woods.

I shed tears

beside the salt sea.

In my pupils

are two seas singing.”

The locality of my infusions in a hospital, then flowing through my body begs the question of my agency over my body. The choices I bare to heal it haunt me in the uncertainty of my infusions. Lorca articulates this feeling much better than I do.

If you manifest, manifest good things for me. If you conduct prayer, keep me in your thoughts. I am diving into this experience head first and I have no intention of looking back.

Here we go!