Saturday, April 30, 2016

Champions of Yes

     The 2016 Triangle Walk to Cure Arthritis was a success! I was able to meet so many amazing people, spend time with family and friends, and be in the presence of dozens of other people dealing with the exact same thing, and for that I am extremely grateful. Thank you to everyone who supported Team Rachel's Rock Stars, either by donating or by coming out to the walk today! Our team did the 3 mile walk, which was lots of fun, but I am definitely paying for it now, because I have been in bed since 2 o'clock this afternoon and my knees, hips, and ankles are revealing their wrath.

Receiving the Young Adult Honoree certificate after my story was read.
Thank you, Arthritis Foundation (special shout-out to Candy Fuller!)*
      Experiences like these always cause me to reflect a bit more than usual. How did I get to this point? Where am I going?

     The truth is, getting to this point has been quite a tumultuous journey, and even though I have learned a great deal and grown significantly as a person during this time, if I could trade all of the pain in for a healthy body I would make the switch in a heartbeat. If there was a magical pill that could cleanse my body of all of its arthritis, I would take it. Unfortunately, neither of these scenarios are viable options, so I am working with what I have been given.

     The truth is, the point I am at now is not perfect either. As I admitted to a friend yesterday, I still have spontaneous nights of grief, in which I am sad that my body hurts so much and I wish that I could keep up with everything and everyone. It feels wrong to be mourning the loss of a portion of my health five years after my diagnosis, but whether or not it is justified does not change its existence, and so I am learning that mourning is something that may take a lifetime rather than a few weeks.

    The truth is, while I am completely honored by the recognition I received today from the Arthritis Foundation, I would rather there be a cure. Yet I am thankful that this organization has the same goal and values, and my life has been drastically changed by the resources I have had the privilege of accessing.

     The truth is, events like the walk today push me to be a better person. I feel recommissioned and reinvigorated to work meaningfully in the communities and relationships I immerse myself in. Seeing people come together for a common cause inspires me to be a more effective advocate, a more loving friend, and a more empathetic human being. The wonderful thing about these goals is that they are completely attainable, and one can start at any second. Maybe it means calling a friend you have not talked to in awhile, or forgiving the driver in front of you who made a dangerous decision, or genuinely complimenting someone who is doing something well. Everyone is capable, and it is always the right time. So how can you love someone right now, whether or not you think they deserve it or have done anything to earn it? How can you push yourself to be more caring and forgiving and invested than you ever thought possible?

Walking with some cool parents*
       The truth is, I feel like I have an insider's perspective on what it actually means to walk through something hard with someone. I think about my parents, and how they have stuck with me and seen me through and prepared me for what is next (in Louisiana!!!). I think about my teachers, who have raised their eyebrows with authoritative compassion as they have confiscated numerous pencils and said, "Rachel, no," when I have insisted on writing long in-class essays with painful hands. I think about my friend Faith, who generally responds with a short pause and a doubtful, "Really?" when I lie and say that I feel better than I do. All of these are lovely examples of how to walk with someone, and how to be there for someone. And it's not always mushy (though it often is, especially if you are walking with a person like me who seems to be predisposed to mushiness), and it's not always funny, and it's not always sad, and it's not always difficult.

     The truth is, this journey has not been very fun, and it is not something I would wish upon anyone. But this journey is made easier by organizations and people that are willing to support each other. We will find a cure. We are Champions of Yes.

*Photo Credits: Faith Jones (thank you!!!!)

Monday, April 11, 2016

Falling Behind

      I really am not sure what to say about my health. The past two weeks have included an intimidating mix of allergies, urgent care, asthma, anxiety caused by excessive albuterol, nausea, and arthritis (side note: 75%+ of my medical issues start with the letter "A" and it really freaks me out). They have included vomiting in the school bathroom at 6:55 a.m., scaling the stairs to my chorus class at 9:00 a.m., limping awkwardly to my independent study at 10:38 a.m., and only being about to eat Ritz crackers and an almond/cranberry/cashew mix until approximately 11:00 a.m. They have included crying while getting ready in the morning at the thinness of my braided hair and taking 20 minute naps that magically turn into 4 hour ones. I have been asked if I am pregnant and if I am hungover by concerned students (re: morning vomiting). It was really hard not to lie and say yes, because I was curious as to what their reactions would have been and I wanted to seem hardcore, but I contained myself and said, "food poisoning," another lie but at least a more socially acceptable one, and one that accurately conveyed that it was not contagious. I guess I will have to save extravagant, fictitious accounts of my life for another day.
A good thing that happened last week:
I committed to Tulane University!
Roll Wave!!!!!

      Yet they have not been awful days. I have been able to walk for the most part, and I really am happy. I have been having fun with my friends, and loving people, and making smoothies. There has been an abundance of arthritis jokes, compassionate smiles, and internal conversations with my joints.

      Although I have been dealing with arthritis for five years now, I have never exactly found myself behind in my classes, or in my friendships, or in "life." Even during my tedious diagnosis process, I kept up with all of my work (I was in the sixth grade so it was not the most difficult material ever, but still). I am not a person who is generally stressed about school. I rarely feel daunted by tests and assignments. I love going, and I love learning. I adore my teachers and do not mind the workload.

     When I reluctantly walked into a trusted teacher's classroom about a month ago and confessed that I was actually behind in my work after a rough week with my health, I knew it was a turning point for me. "This is not the Rachel people know," I thought. More importantly, "this is not the Rachel people like." People, teachers especially, have always complimented my ability to stay on top of my assignments even in the midst of my failing health, and I have never used my illness as an excuse not to get things done. But the fatigue was crushing, and the hours between my long after school naps and nighttime sleep were simply not enough to get all of my work done up to my standards. While my schoolwork is important to me, it is not my number one priority, and therefore it was not all done all of the time. Admitting my inadequacy felt so risky, yet also so necessary.

     The truth is, I am not Superwoman. I cannot do it all of the time. I cannot always stay awake to read the last chapter or complete the last math problem. Even though six to seven hours of uninterrupted sleep is a dream for many of my friends, it does not cut it for me. I cannot always stay awake in class, either. On Friday I was absolutely devastated because the library was closed, and I was planning to nap on the carpet. That is not a normal reason for devastation; I am sick and I am fatigued. I have been keeping up with friends for the most part, but I really have not had much energy to put into relationships over the past few days, and I have been saddened knowing that I am distancing myself from people but feeling powerless nonetheless. So there are disappointing times, when I know I should be talking to someone about an activity they are participating in or complimenting their shoes or something minor like that, but the process of going up to them and trying to seem normal and comfortable has felt overwhelming, and so I sink into something more independent that requires less energy.

     It is on days like these that I am especially grateful for friends who refuse to let me drift away. I texted my friend Amelia Thursday night to let her know that I was not feeling well, and immediately she offered to help me in several very practical ways. On Friday, this friend saint walked slowly with me, left in the middle of our physics class to retrieve my ice packs from the freezer (which was in a completely different building), and even offered to bring my car around so it would be closer. I am so, so lucky to be her friend. When I went to the mall with my sister and mother after school, they waited up on me after I explained that my hip only had about 20 degrees of motion.

     So that is all for me. I am completely caught up now, and I am trying to reconnect even though it is presenting itself as a sizable challenge. I am trying to stay positive even though my knees, ankles, and hips are not having it, and I am reminding myself that this too will pass.

     I hope that when you read this you still like me. I hope you can accept that, while it is a rare occurrence, I do fall behind sometimes. I hope I can accept that, too.