I never eat almond butter and jelly sandwiches, but for some reason they brought me comfort in the past few days as I ate them in the hospital waiting room. I had packed them for me and my parents, wrapping them tightly in plastic wrap so they would be intact when we felt our stomachs gurgling. When I unwrapped my first one I expected to be unsatisfied but after eating it I was actually deeply satiated. The soft bread and subtle nuttiness with the slightly sweet jam felt comfortable and safe. This sandwich wasn’t going to hurt me or my Mom. She has no jam with hers, just bread and almond butter. This is one of the only consistent parts of her day lately. She knows that she can eat that and it will coat her stomach and sooth it rather then upset it. She can depend on her almond butter sandwich. I was happy with the comfort I found in mine. I felt connected to my Mom, eating the same thing as her.
By the fourth day seeing her sitting in the wheelchair became a more familiar site. Just like everything over the past year and a half that didn’t seem quite right but soon became a familiar reality. I’ve been getting used to these abnormalities much quicker as time goes by. Usually by September we’re planning all of the fun things we’re going to do for the holidays—where we’re going to go, what we’re going to cook, and how my mom will decorate. This year we can only take it one minute at a time. My mom can hardly make it across town to the doctor let alone across the country to visit our family. She knows this but we don’t talk about it.
We spent the last four days in the hospital while she had a series of scans that lasted for 20 hours. This was the last resort to find the holes in her spine that have been leaking spinal fluid and causing her debilitating pain for the past year and a half. She was poked and prodded and wrapped up and moved around. She has gotten used to this although at times she screams “NO MORE” at the top of her lungs. “I don’t want this anymore!” We keep telling her it will be fixed soon but then there is more. We thought this would be the resolution but we found out that the scans showed nothing. The end is nowhere in sight now.
The doctors wanted to test the fluid in her nose to see if it showed signs of the spinal leak and in order to do that they had to put what they call “pledges” in her nose. Three of these pieces were shoved up into each nostril, far up to the top of her nose close to her eyes. They were attached to strings that came out of her nose and were taped to the sides of her face. She had three strings coming out of each nose, each with a number label stuck to it. We could hear her screaming from the waiting room down the hall when they put them in and took them out. They had to do this process twice and after the second time she had to go home with them overnight. Her cheeks near her sinuses were swollen and red and her eyes sunken in. She took breathes out of her mouth since her nose was clogged up. What more could they do to her before they figured this all out?
As she laid on the hard, white scan table in the nuclear medicine wing of the hospital for the fourth day in a row she scrunched up her face as it turned red and in anger and fear from the deepest part of her she violently made motions to slit her throat and wrists. My dad and I immediately grabbed each of her clenched hands and brought them down, holding them tight. She resisted and began to cry. She looked up towards the ceiling with a deadened glaze over her eyes through her two pairs of glasses. One she wore to see and the other a shaded pair to help with her sensitivity to light.
The nurse who had been with her all through the week came in to begin the scans. She wrapped her up tightly like a mummy with white blankets, only her head exposed, and straps across her body to hold her down. At that moment I lost my breath, I felt so claustrophobic for her. As much as she felt caged in emotionally and without any control I could physically see with my own eyes.
I wheeled her around in the wheelchair all week her dead weight falling limp in the seat. On the last day I had to steer with one hand while I held her head up with the other. Her legs shook uncontrollably and her face drooped down. She let out moans and noises as she has done for the past year. Gibberish like a small child trying to form words but doesn’t have the ability to. When the pain sets in that strong she cannot speak, her hands and body contort and she goes into another place in her brain. The place she goes when she just can’t take anymore. She bends some fingers and shoots her arms into the air. She yelps out and makes random noises that she cannot control. “be be be,” “doy doy doy.”
As I wheeled her out of the hospital, following the route that had become so familiar in the past four days, my eyes felt heavy. I had been so strong for everyone else but was forgetting to be strong for myself. I felt my eyes puffed and struggling to stay open, and my feet beginning to drag across the floor. I looked down and breathed out a soft breath. Whatever would come next I would be ready for it, because I had to be.
I remembered the little girl I had seen in the waiting room the day before in a wheelchair. Most of her hair gone, just little patches of scraggly, black hair. But her smile—her smile was vibrant and captivating. I kept staring at her as she played with stickers with her mom. She made me smile the kind of big, genuine smile that you can’t replicate. A fire ignited inside of me for her. Look at how strong she is. What was she going through? Did she understand? How were her parents coping? What was her name?
I looked down at my purse and saw the rainbow unicorn poof that I had clipped to it, it was from Claire’s. Then I looked over and saw her neon pink backpack sitting on the chair. I thought how perfect the poof would look on her bag. Something inside me pressed me to give it to her, like I had no choice. So I caught her eye, then her mother’s, I smiled and got up and asked if that was her backpack. I said that I really like pink too and that I thought this poof would look better on her backpack then on my purse. She had to have it. She smiled a huge smile. I slowly walked back to my seat and kept reading my book. Her mom explained to her what a unicorn was. Soon after she was wheeled into a room to be scanned. Just another of many to frequent those rooms. I’ll never forget her smile.
Some day my mom will smile like that again. I hope. Or maybe she is too damaged. Her depression has gotten such a toxic hold of her. It’s too hard to tell what the future will bring right now. Especially since after all the scans and tests nothing was found. The doctors have no direction to go in. I can’t be strong right now. I want my mom to have her life back. Thinking about how she felt when she got that news that the scans showed nothing they could fix makes me want to throw up. And that I couldn’t hold her in my arms right after, it hurts me so badly. Knowing the mysterious pain she has been in would only continue.
I want to fix everything. If the doctors can’t I want to be able to. God, what I would give to be able to fix this. I want to be the almond butter sandwich, and make everything ok.