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. 

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