Sunday, February 7, 2016

Random Doses on Random Days

      Before my arthritis, I was quite the athlete. I was an active lacrosse player, horseback rider, and runner. I was planning on playing tennis in middle school. I completed 5K races and bounced around with all of my friends. Being stripped of those abilities was humbling and hard. Although it has been about five years since my diagnosis, I still very much miss doing those things, and on the days when I am flaring badly the wound still feels fresh.

      I am trying to be smart about this running thing that I am currently doing, so I have set limits for myself, limits that are based on things I have read online and conversations with my mother, because I don't have a physical therapist right now and I haven't been in to see my rheumatologist recently. I know that even if I want to go above 2 miles I should give it a little bit of time, and my hips, knees, and ankles have certainly been confirming this gradual pace. After five years of dealing with this condition, I can confidently distinguish between muscle pain and joint pain, and 95% of what I am feeling when I run and afterward is joint pain. It it frustrating, because I know that I am strong enough to run more, but I must remember that my joints cannot always keep up with the rest of my body, and so I have to work with it and appreciate the situation for what it is.

Congratulations to Emily for
committing to UNC-Chapel Hill!
This girl is going places.
     My mother is an avid runner, having completed both half and full marathons in the past, so she has been very supportive of my running and has given me valuable advice. Additionally, my friend Emily ran with me a few weeks ago, although we ended up walking most of the way because my knees and hips were not having it. I had already run twice that week, including once the day before, and my arthritis deemed this pace unacceptable and demonstrated its disapproval by giving me full knees and a painful step. Unsurprisingly, I was disappointed by my inability to run more, and I was afraid that Emily was disappointed in me as well. She is a fantastic runner and a skilled athlete, and I am not even in remission (yet). As I was attempting to find the right words to say and the appropriate apologies to make for my incompetent body, Emily gently but assertively offered words of encouragement and even promised that we would continue running together, no matter how slowly I needed to go or how much I needed to walk. I confessed to her how frustrated I was with myself; I used to be such a good runner, and now I see myself struggling to pick up an ability that I once excelled in. I won the fastest time for a running contest in my fifth grade physical education class, and while this achievement was and is pretty insignificant, I remember it because it was the last award I received for my athletic abilities before my immune system sent me on a downward spiral. Emily spent a considerable amount of time, conversation, and brain power helping me to think through the best and healthiest way to get back into running. Most amazingly, Emily made me feel proud of myself for what I could do instead of disappointed with the many things I could not do. Upon further thought, two years ago she was kindly pushing my wheelchair from my chorus class to my AP Government class, and now we are going on runs/walks together. Emily is right - that is progress! I am excited to continue running and to go hiking sometime in the next few weeks.

      When I told Emily that my rheumatologist might give me some running rules at my next appointment, which is in mid-February, she laughingly but very seriously offered to help me break those rules enough to make me feel in control of my life but not so much as to induce a flare. As always, I am thankful for friends who offer their support authentically and compassionately. I appreciate sarcasm and use it frequently, but I also think there is a lot to be said for conversations that are honest and genuine, and I value people who know when and where to draw the line. Sometimes I hunger for something concrete in a world that seems full of ambiguity, and Emily managed to be realistic, optimistic, and understanding all at the same time.

    I have taken a recent hiatus from running, because I have been participating in an annual, district-wide school show choir performance that takes place in my county. It has been a lot of fun, but as I detailed in my last blog entry, the post-rehearsal days caused me a lot of joint pain and illness. We finally had the show yesterday, and while I enjoyed it very much I am glad that it is over. When I got home last night, I began my ritual of seeking out the random bruises that appeared on me during the course of the day and assessing the state of my joints.

      Last year during this show, the high schoolers had a big number where we all ran on stage and then did a lot of physically intense choreography. Obviously, I want to be treated like every other student there, so I did not tell the choreographer about my health. He placed me at the front of one of the lines, meaning that I would run onstage first, all the way to the other end, and my speed would be crucial to the timing of the song. Everything went fine in rehearsal aside from the normal pain caused by running, but when I ran across the stage during the actual show something felt incredibly wrong with my ankle. I am shocked and grateful that I did not collapse, but I was keenly aware something was very wrong. I knew it was arthritis related, but the show must go on, and so I smiled through clenched teeth and did all of the choreography as I normally would have. I maintained my composure, even though I was frightened by the prospect of knowing that I could fall and find myself unable to stand back up at any moment. When the song finished and I struck the final pose, I was proud of myself, but extremely startled and shaken up by the entire situation.

     As soon as I returned to my school's designated dressing room, I removed my character shoe and found myself in tears, gently trying to coax my ankle back to comfort. Everyone was concerned and my friends inquired about what was wrong, but I tried futilely to explain that it was more the fear than the pain that had me all worked up. I was glad when the entire show was finished that night, and I was also starving, so my parents took me and my sister to Chipotle to celebrate the performance.

     So there I was, in Chipotle, at 9:30 p.m., in my flashy, red show choir dress, with full stage makeup, slightly ripped pantyhose, and beige character shoes, standing behind a tall man with a clerical collar who was also waiting in line to use the restroom. I realized that I looked like a walking disaster, but my curiosity about religion and specifically about various Christian denominations got the best of me and I timidly asked the man if he was a priest and where he worked. I am 100% sure that this guy thought I was absolutely crazy. He answered my questions succinctly and dismissively, talking in brief, broad sentences and not even revealing which church he worked at. As much as I wanted to know, I could not blame him, because I have to admit that his visual assumption that I was a train wreck was completely correct. We did not have a long conversation, because as soon as the restroom opened up, that priest dove in without even nodding his head toward me. Looking back on it, the situation was hilarious and embarrassing, and I get a good laugh thinking about how uncomfortable he felt and how out of place I was.

      Even though it sometimes makes for moments of disappointment or awkwardness or both, I am going to keep running and hiking and dancing and singing, because those are things I enjoy doing and I do not want to take my ability to do those things for granted, even if that ability is only granted to me in random doses on random days.

1 comment:

  1. Hi Rachel! I also participated in EOE this year and I just want you to know that you did a great job and I was SO impressed by how you did everything even though I know you were in pain. Keep on dancin'!

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