Wednesday, June 27, 2018

My People

          I am going to see my people tomorrow!

          In just a few hours, I will be flying to Seattle for my fourth National Juvenile Arthritis Conference, an annual meeting held in two different locations every summer by the Arthritis Foundation. I am so excited! 

          Over the past few months, I have found myself flat-out exhausted after extensive interaction with healthy people. There are no words I have ever spoken or written that have made me think that I could help someone living without a chronic illness to "get it." I admire the friends who try anyway, because the trying truly does help. Still, there is nothing like sitting in a room full of people who experience the same things you do, who cry the same tears in their surgeon's office and laugh the same laugh when the needle pops off their syringe, who have the same life-sucking conversations with pharmaceutical companies and sweet chats with nurses who go above and beyond. I am grateful for a community of people who require no explanation, who pass no judgment, who hide no harsh realities. It is the only time of the year in which I do not feel innately problematic. I look across the mass of people and see hundreds of kids with arthritis. Without even thinking, I love them all more than I could ever explain. It is crystal clear to me that each one of them is whole and complete and wonderful and capable and hilarious and hardworking and clever and kind. If I can look at everyone else with such admiration and compassion, I reason that perhaps it would not be so ridiculous to extend a bit of that to myself during the many moments in which I feel like having arthritis makes me a bad person.  

          While my friends with arthritis play irreplaceable roles in my life, I am thankful for all of my local friends who have become "my people," even when they do not understand what it is like to live with juvenile arthritis or with a chronic illness. Three separate times over the past couple of weeks, people have directly asked me if I might allow them to listen. One friend even pulled up a chair next to me when I had clearly been crying, and did not seem at all phased by the absurd amount of tissues it took for me to get through the conversation. When I promised her that I would pull it together, her immediate response was, "You don't have to." The kindness of my friends has caused me to reflect on how infrequently I ask to listen, and how often I try to steer conversations with my own questions and assumptions instead of being fully open to receiving whatever needs to be received. I am grateful not only for how much my friends care for me, but also for all that they teach me about compassion and about how to better love others. Being someone's "person," even just for five minutes, is much more difficult when you do not understand what a person is going through than when you do, and the bravery that it takes for my local, mostly healthy friends to step into this area of discomfort and of the unknown is not lost on me. I am thankful for their bravery, for their willingness to take risks, for their presence, and for their persistence.

My amazing friend Georgia, who I had the pleasure of hanging out with
today! Every conversation we have is so healing to my soul, and I am
grateful for her gentle passion and her magical ability to understand
what I am trying to say about my experience of chronic illness even
when it is totally disorganized in my own head. She is on her way to
becoming a fabulous nurse, and I am so lucky to call her my friend!
         Last year, on the evening I returned from the conference, I went out for late-night ice cream downtown with a beloved friend from home. This friend deserves all my gratitude, because she allowed me to talk and talk and talk about all of the wonderful things I experienced at the conference. I went on for what felt like forever about all of the knowledge I soaked in during my time in Indianapolis, and about how deeply human I felt. I was empowered in a way I had not been in years. I was slipping out of the notion that everything that happened to me in terms of my health was my own fault. I was blessed with a newfound awareness that I was not alone in any of the struggles I was facing. I was speaking about my illness openly and confidently, and I was talking about parts of it that I had never before discussed with "healthy friends." For the first time since my diagnosis, I did not feel an ounce of embarrassment while talking about my disease. My friend expressed how different things seemed, and we were both so grateful for that difference. 

A lovely dinner with my sister, Hannah, before she takes
me to the airport in the morning.
          While I write a public blog centered around my illness, I hope to never present the false narrative that I am consistently unashamed of my diagnosis or handling it with bravery and resilience. There is nothing wrong with being unashamed, brave, or resilient, but that is just not who I am at this point in my life. I hate that my illness makes life physically painful. I hate that my illness makes people uncomfortable around me or unsure of how to approach me. I hate that my illness makes creating plans with me complicated for other people. I hate all of these things, and if I could wish or pray arthritis away, I would do it in a heartbeat. This spring, I had the opportunity to attend a religious conference without letting anyone know that I had an illness, and it was a revolutionary experience. I loved it. I felt like people were seeing me as Rachel, and it was a desperately-needed opportunity. And yet, I still never felt as whole as I do at the JA Conference, where everyone knows my diagnosis by the color of the bead on my nametag. I walk around with my most painful struggle broadcasted to every new friend I meet, and yet I feel more loved and understood than I do anywhere else. 

          I am thankful for opportunities to go and be surrounded by my people. I am thankful for my people here at home. I am thankful for my local friends with autoimmune illnesses, who offer me an invaluable support system, and for friends far away who stay in touch and check in frequently. I am thankful for everyone who chooses to make the world a little easier for people with life-altering illnesses. I am thankful for friends who listen, and friends who deliver smoothies, and friends who are thoughtful about the ways in which my illness affects me, and friends who ask questions, and friends who wrap me up in hugs, and friends who promise me that tomorrow will be better even when they have no idea if it will be or not. I have so many people to be thankful for. 

          Thank you for being my people. 

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