Sunday, June 17, 2018

This Part of It

          Living with a chronic illness is hard. Living with a body that hurts is hard. This is hard, and what I am writing about below is a small component of what makes it hard.

          I never realized how much of my self-identity was wrapped up in what I was capable of until I first got sick in middle school, and then it became very clear very quickly how self-centered I was, even when I thought I was putting others first. While this is a flaw that I take responsibility for, it is also a harmful and damaging reflection of the ableism and individualism that is rampant in our culture, economic system, and religious institutions.

Taken on a beautiful drive right outside of the North Carolina
mountains while I went to visit my wonderful grandparents a
couple of weekends ago.
          Over the past few weeks, I have been overwhelmed by appointments and treatments and medical recommendations that will drastically alter my already limited lifestyle and decisions that need to be made. I have ached unbearably from medications and treatments that are tough on my body and from an illness that is even tougher. I have wondered if my body will ever allow me to do as much as I want to do, or even just as much as a healthy person can do. This question has resulted in a bit of heartbreak, considering that my somewhat tumultuous medical history points to the answer "probably not." I am worried about what that answer will mean for my career, for my friendships, for my faith, and for the years ahead. How do I think about a career when my body is unreliable? How will I sustain friendships when my health is a hot mess? What is the appropriate way to relate to God when everything hurts? How do I plan for the future when I am not certain what state my body will be in tomorrow?

          I have not been able to do as much as I want to. I have not been able to work as many hours as I want to, and I have not been able to love people as well as I want to, and I have not responded to as many emails as I want to, and I have not filled up my schedule as much as I want to. I have not been a very good friend or daughter or sister or church member or even puppy snuggler. I have cried to my mom, feeling like a failure, too many times. I want to feel whole and capable again. I feel like a reduced, weakened, and unimpressive version of me.

          When my mom casually mentioned a few nights ago that she was proud of me, and that I was doing a good job and doing a lot, I burst into tears. I am a bit weepy these days, especially when my pain levels are high. When a Target employee complimented my eyeliner, I sarcastically joked that it was the only thing that I had done well that day, but my sarcasm was rooted in trying to be funny rather than in disbelieving my own words. My self-esteem is not thriving, but overall I am still doing okay. I have spent healing time laughing in the car with my friends, bonding with strangers in the grocery store, celebrating with people I care about, watching Queer Eye, and listening to people I love tell the very best of stories. 

          I would like to be able to tell you all that I am on the other side of this period of low self-esteem, but that would not be the truth. I believe in honest conversations about chronic illness, even when they are difficult and even when my belief is reluctant. Chronic illness is hard to live with, and even though I am trying, and even though I am surrounded by good people, it is still hard.

Our little dog, Lexi, who I do not feature enough on this blog
          Sometimes I do not feel so great about myself, particularly in ways that relate to and are affected by my illness, and I think that is okay. It is uncomfortable, but it is okay. I know that there are other ways to form an identity, ways that are more sustainable and less egocentric and more in line with my values. While I would much rather be healthy and capable of doing all that I want to do, today I am choosing to be at least a bit grateful for the failure that is forced upon me, not because I am superhuman and capable of praising awful things in some sickening way, but because this seems like the best option for existing today. Perhaps there is something holy about realizing that my body is fragile. There is certainly something holy about the friends and family members who have swooped in with encouragement and kind words and selfless acts, reminding me that I am deeply and undeservedly loved even when I am nauseous and fatigued, and even when the majority of my joints hurt and I am not as functional as I would like to be, and even when I am weepy and frightened. I like to think that there is something holy about honesty and about writing out this experience of feeling like the worst, even though I do not particularly feel like publishing or sharing this post.

          Chronic illness is not all IVs, MRI machines, X-rays, appointments, injections, and physical pain, although all of those things can certainly be a part of it. The pain of knowing that you would be a different person without so much pain is present as well. Thank you for listening to this part of it today. Thank you for trying to understand. If you do not have to imagine your life with constant physical pain, if this life is already your reality, then thank you so much for being here. 

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.