Friday, May 25, 2018

Pink Pomegranate Shampoo

Today involved getting paid to talk about all of the
things that make me happy, peaceful walks through
 campus on a sunny Carolina day, and much-needed time
spent with delightful friends like Alana!
          I will be a bit sad to let eighteen go next week and to move onto nineteen. I love eighteen. I love being a teenager. Nineteen feels too close to my twenties. I would like to stay right where I am; I have decided that eighteen is the perfect age. People are okay with me not knowing anything at all, I get to ask anything I want and people are willing to help, it is considered acceptable for me to request advice from every single person I encounter, and I am granted the privilege of soaking in the wisdom and experiences of those around me. I am allowed to abruptly admit, "I don't know," as much as I want without anyone scolding me. It seems as though being eighteen has granted me a special sort of permission to ask questions and to be wrong that will not last forever. I wish it could.

          Per usual, the universe has offered me many lovely little luxuries to celebrate and to be grateful for over the past week. Pink pomegranate shampoo. Time spent with friends whom I could not possibly love more. Iced coffee. Summer work that I adore. Bright sundresses. Thunderstorms that seem to shake the whole world. Laughter. Free birthday month gifts from cosmetic stores. Changing fruit seasons. No surgeries on my calendar. These are all things that I love, love, love.

          I am scheduled to increase my methotrexate dose tomorrow night. I tolerated the third dose perfectly, a welcome and shocking discrepancy from the overwhelming fatigue the first two doses caused, and my fourth dose (last week) resulted in only mild nausea. Please pray that this trend of not-dying-on-Sundays-post-MTX continues, because I could really get used to a lifestyle that helps my joints without requiring me to sacrifice a day that is so important to me each week. With the permission of my rheumatologist, I skipped this week's bloodwork and am holding off on upping my dose as scheduled. I know we will have to do so shortly, but I decided that I want to keep feeling eighteen this weekend, and I am grateful for a physician who understands and respects this. I am prioritizing the lovely little luxuries over the big picture this weekend, and my medical team is not making me feel like a terrible person for it, and that is no small miracle.

          My health seems to be on a good path at the moment with this new treatment plan, and while there is still certainly room for improvement, I am grateful to be out of crisis-mode and to feel like I am capable of most of the things I want to do. When I am being honest with myself, I know that this will not last forever. Part of me feels like I am always preparing for the next flare.

          And when the next health crisis barges into my ordinary, relatively healthy life as an uninvited guest? I will hate it and I will be disappointed and I will feel trapped inside of this body of mine. And still, at the very same time, I will have pink pomegranate shampoo, even when using it brings me to tears over joint pain and hair loss. I will have friends who invite me over and accompany me to appointments and call on tough days and cry with me, ensuring that I feel loved even when my body is destroying itself and I feel all alone. I will have tasks that I am capable of completing even when I feel incomplete. I will have thunderstorms that slam against my bedroom windows to remind me that the world is out there and out of my control and so are the cells in my body sometimes.

         I want good health. I need good health to be who I want to be. And when it slips through my fingers, I hope I will remember all of the lovely little luxuries that have made eighteen such an extraordinary year even in the midst of deep fear and sorrow.

A beautiful beach on the Outer Banks, where I spent this past weekend with my gracious and hilarious friend Amelia! Amelia and I have been friends since before I was even diagnosed with juvenile arthritis. She has chosen to stick with me through the very worst moments of it, from painful days of not being able to walk down the school hallway in the sixth grade to scary systemic symptoms that began in the fall and continue to hover over me now. I could never thank her enough for her kindness, and I am eternally grateful for our shared love of all things British monarchy-related. 

          I spent several months of eighteen feeling like I had no age at all, like I was just a sick body without any true properties, floating between cold, metal stethoscopes, overwhelmed by pain in a way no human being should ever experience, whether eight months old or eighty years old. Honestly, during a few particularly dire moments in the fall, I worried that perhaps I had already seen most of my birthdays. No medical team could seem to pinpoint why my health was collapsing so quickly and mysteriously. I chose not to verbalize this fear. I did not want anyone to worry. I was afraid that my fear was an overreaction. I only disclosed my heartache to one friend, on a particularly desperate day after another alarming but uninformative medical appointment. I sat on my bed with a box of Kleenex and puffy eyes and admitted through my sobs, "I am afraid of dying. I am so afraid of dying."

          When I look back on all of the ways that my friends swarmed in with immeasurable support and comfort in the fall, I realize that it was silly of me to think that I would have had to explicitly define this hovering sense of existential threat to them. They already knew, and so they rushed in with everything they had to offer to a sick eighteen-year-old. I will forever be indebted to them for that.

          I will miss eighteen dearly, but I am optimistic that nineteen will be much less turbulent from a medical standpoint (this is the point of the post at which Alana would physically pick up my hand and knock it on wood). I like to think that grand gestures of generosity and lovely little luxuries work in tandem to get all of us through each year, whether we are experiencing the worst or the best or both. Perhaps sometimes we need the bold, caring words of friends to lift us up, and at other times a pump of pink pomegranate shampoo will do the trick. What a funny life. What an absurd age to be. What a good one.

1 comment:

  1. Sweetie, I know 18 has been a fun year for you, but the years ahead will be even more wonderful! God has huge plans for you. I know you like being 18 and not expected to know everything, but your maturity surpasses that of many adults I know. It sounds like you have been through far more than most "adults," and you already have so much to offer the world just from being cursed from this awful disease. Blessings! I look forward to reading more of your blog !

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