Saturday, September 21, 2013

Rights and Wrongs and In-Betweens

     I honestly do not think I will ever be sure what the right thing to do is in the fuzzy world of disease. Is it right to try to let my body heal itself without medication? Is it right to inject poison into my arms on a weekly basis with no guarantees? Is it right to load myself down with drugs? Is it right to try to "pray it away"? Is it right to keep on disappointing myself by going to doctors?
     I do not know what is right. I do not think I will ever know. I do not think it is possible for someone as ordinary as me to know such large, grand things. I have no problem admitting that in the world of healthcare, I have absolutely no idea what is right and what is wrong.
     However, I have a moral sense of what is right and what is wrong, as well as a physical sense. I instinctively know, as all humans do, that pain is wrong. Pain is wrong and bad and no fun. Feeling good and healthy is right. Healthy is right and sick is wrong.
     What very much bothers me is when people who do not share my experiences criticize me on my choices. Right now, I am medication free. I am not proud to say that, but I am not particularly ashamed either. I know what my doctors want. My doctors want me to be on medication. But last time I checked, they do not have arthritis. So I get a bigger say than they do.
     When someone criticizes my medication choices, it is as if they are saying, "you are not trying to obtain what is morally and physically right by not going the path I would go in". We all see the end result the same way: pain is bad, healthy is good. However, we see different paths to healthy. But heaven forbid I do not choose your path, that would be such a crime!
       Also, if I have gone off of something that is scientifically proven to work, I think it is safe to bet that there is a reason I did it. I like to think of myself as at least a tiny bit intelligent. Intelligent at least enough to not do something completely stupid.
       I do not know what is right and I am willing to admit that. Trying to tell someone what is right in the world of in-betweens is an arrogant thing to do. It comes off as parental and harsh. It is better, when talking to a friend or family member with a chronic illness, to focus on the end goal, the goal of no pain at all. This end goal is often the only thing that unites me with my friends. They might not understand why I am not on any medication, but they do understand that I am "sick and tired of being sick and tired".
       I would not understand me either if I were on the outside of this. I would not understand why someone would quit a medication that seemed to be helping. I would judge me and think of me as not particularly bright. But now, having this terrible disease, I cannot bring myself to judge another person's choices. One of my friends recently stopped seeing doctors and is now on a tea diet to try to cure her arthritis. She has not even tried traditional medications yet. And miraculously, I can understand that. Because at the end of the day, we both want the same thing. We both want to be able to keep up when walking crowds, and never have to ask for help. We want to be able to sleep at night and to run around and to fulfill all of our life goals. We both want to stop hurting. I cannot judge her for wanting desperately to "be ok", because I want the exact same thing. Some people are already ok. And that's great, but you cannot judge those of us who aren't.

Love,
Rachel

Friday, August 16, 2013

Silence

     There is an ongoing joke within my youth group that I hate fun. I personally don't mind this joke at all, because at the end of the day, I completely agree. I'm in the minority of teenagers who do not like loud music, dancing, chaos, messiness, and large groups of people. In fact, I cannot stand crowds and lots of noise. I've been thinking about why this is lately, and I have come to some conclusions.
      First of all, I place unmeasurable value on one-on-one or small group conversations. I feel ten times more comfortable in a small setting than with a lot of people. I'd rather have a really good conversation with one other person dealing with arthritis than be placed in a room with one hundred people with arthritis. At church camp, where this "Rachel hates fun" joke came about, my mission site involved interacting with children. By the end of the week that we were there, I knew about 4 kids really well. I was familiar with all of them, but I knew those 4 children significantly better. I feel like that is where God calls me a lot of the time. I feel like a lot of the time I am meant for one-on-one conversation with people. Of course, in a lot of ways, this turns into a weakness. But sometimes it is a very good thing.
      Secondly, I am completely comfortable with silence. I do not feel awkward when a conversation, car ride, meal, etc. becomes quiet. I have a theory that more words are said in silence than in speech. I think arthritis has really made me this way. A good friend doesn't always speak or know the right thing to say. Sometimes, a good friend just shuts up. Silence is very wonderful and is perfect in some situations. It is time for our society to overcome the notion that silence is bad, awkward, and unnecessary. Silence is as crucial as sound. It was only after a long time of sitting against the wall with our legs crossed that one of the little boys from the mission site at camp began to tell me why he was so upset. What he needed was not only a fix to his problem, but someone to care. He needed someone to wait with him until he was ready to explain; someone to care enough to be willing to sit there in silence with him. Even if he never told me what was going on, I still think just being there with him would have meant something to him. Because I have been exposed to the beauty and the kindness of silence, I hate lots of noise and loud sounds and commotion. I like the quiet moments much better.
       My idea of fun has been drastically different ever since I got arthritis. I like going to quiet little restaurants, listening to people play guitar, and writing. I like getting on the elevator at school and having a normal, happy little conversation with whoever else is on there. I like listening to other people's stories and reading. I like curling up on the couch with my sister and watching Grey's Anatomy. And my favorite thing in the world to do? I like to go to the church playground all by myself and swing. I like being able to hear the birds and forget about everything else going on.
       I firmly believe that the reason I appreciate silence so much is because I have arthritis. In moments of intense pain, you find that the most important thing to do is breathe. You find that no words anyone can say will make anything better. Silence is essential in those moments.
       I like having fun, but I like my kind of fun. My kind of fun is not loud. My kind of fun is rather quiet.

Love,
Rachel

Sunday, July 7, 2013

Marginalization

      Let's get something straight. Marginalizing people because they have a disease is not a thing of the past. In fact, it happens every day. Every day, people are looking down upon, spat upon, and isolated because they have a disease. A disease that they have no power over, a disease that they cannot control. Even children are marginalized due to illnesses.
      I have felt marginalized before. It is not fair. It is not fun.  I am the type of person who is much more likely to be upset about something than angry about it. I am aware of that. So when I am marginalized, or when I see other people being marginalized, it makes me very sad. I do not think of that as a bad thing. If I were not upset about it, I would be some sort of monster with no compassion. 
       Along those lines, our society also marginalizes people who are very compassionate. People who want to change the world are looked at as lunatics. It is frowned upon to become too "emotionally involved" in practices such as medicine, counseling, law, teaching and more. I agree that there are ways to become too emotionally involved. If we ignore our instincts and logic, we end up in dangerous and vulnerable situations. However, if we do not become emotionally involved at all, or if we only let ourselves get involved to set degrees, what good are we really doing? Sometimes, people just need someone to care enough to be willing to become emotionally involved. People need someone willing to sacrifice and risk heartbreak for them. I think we forget that all too often.
      We are human beings. We are meant to become emotionally involving. We are destined to be sympathetic and understanding. By the grace of God, we care about each other. We mirror each other. People laugh together and people cry together, but rarely does one laugh while the other cries. 
       So it all comes back around. We marginalize people, yet we are not willing to invest in them, to become emotionally involved to help turn their lives around. We regard disabled and sick people as the lower groups of society, yet we have no interest in even asking them their names. We do not want to raise them up, because that would bring us down. 
       One of the advantages (and disadvantages) of having an invisible illness is that you lead a sort of double life. One day you are fine, strolling through the mall like any other teenager. The next, you're struggling up the stairs and asking your best friends if they can open your water bottle for you because your fingers won't move. I live both lives. I see both sides of the story. One moment I'm in the "normal" group, the next I'm marginalized. And you know what? It's awful. 
       The reality of it is even worse. I never change as a person, whether my joints are pulsing with pain or they are doing relatively alright. My attitude changes. My happiness changes. But I never change. The heart that beats inside me when I am in pain is no different than the heart that beats inside me when I feel okay. My DNA doesn't flip around. My name never changes. 
       No one deserves to be marginalized. 

Love,
Rachel

Saturday, June 29, 2013

Aim High

      In elementary or middle school (I can't remember which), I watched a video on smallpox. That video changed the way I think.
      I haven't told many people about this, but that video really hit me. First, we saw all of these pictures of people infected with smallpox. It was horrifying and hard to look at, but more than anything, it was saddening. Many of them were only children. Children like me. That could have been me. It really hurts to see things like that. But then the laboratories took over the screen. They showed the creation of the smallpox vaccine. Then, they showed all of the epidemiologists and health organizations working together. You know what the goal was? The goal was the eradicate smallpox from the entire world.
      I was stunned when I saw this. Their goal was the whole world! I cannot imagine shooting for a goal that big. I mean, isn't the world all we have, at least right now? There isn't a bigger goal! How in the world did they think they were going to completely eradicate smallpox? Plus, doesn't that seem kind of unattainable? Isn't that just setting themselves up for failure?
      Nope. They did it. They eradicated smallpox. There are no more cases.
      If they can eradicate smallpox, can't I set high goals, too? After all, they were only human. This is the perfect example of what teamwork and aiming high can do for you. I find it bothersome that some people think I'm crazy when I aim high.
      On top of many other things, I am aiming for remission. I am not putting a time limit on it, because that will upset me if I don't reach it, but I want it very badly. I don't think it is unreasonable or stupid. I think remission is something I will one day have. I truly do. Of course, I hope that remission arrives sooner rather than later, but I know it will. I think that is the Christian hope that everyone speaks so highly of: knowing that this life is not the end of things. So even if I never go into remission in this life, one day everything will be lovely and pain-free and I will be able to run and chase fireflies without tiring or hurting. However, that doesn't make today much easier. Because today, it hurts. And today, I was limited by it.
      People always used to tell me that I could use my juvenile arthritis to relate to other kids with juvenile arthritis one day. I'm pretty confident that I'm no longer headed down the pediatric rheumatology path, but I really do think it will be an experience I can use to relate to others with. When people first suggested that I will be able to speak to other kids with arthritis one day, I was a little overwhelmed. I mean first of all, I'm nothing special in dealing with this. I'm pretty darn average. Secondly, how in the world will I be able to talk to kids with arthritis? Won't it make me upset? It's hard at the arthritis conference to look around at the conference area and know that all of the other kids hurt too. It's hard to walk up to the kids of a mom whose blog I read and know how much they have been through. I don't go through as much pain as some of the kids there, and it's hard to think that they have to deal with the same pain or worse pain. In fact, it is hard to know that they have to deal with any pain at all. It is not okay with me.
      But now it seems so clear that even though I don't believe my arthritis is a blessing or purposeful "gift", God will be able to use it. I will be able to look in that child's eyes with empathy and I will be able to know how badly it does hurt. I may not be able to fix it, especially since I no longer have my heart set on being a doctor, but I will be able to understand. I cannot even begin to count how many times I've wanted someone to understand.
      I will aim however high I want. If human beings can eradicate smallpox, then I can live an extraordinary life.

Love,
Rachel

Sunday, June 23, 2013

Never Defined By Disease

      I'm the girl writing the angry blog post at midnight on my bed in my room. Honestly, I was about to go to bed. In fact, I want to go to bed. I don't even need to write this, as terrible as it sounds. I have an idea for another post separate from this one already, and I wrote a post yesterday that I was planning on publishing Monday. But for some reason, I get my best ideas late at night. Tonight is one of those nights.
      It really, really bothers me when people tell me that my JRA does not define me. I know that sounds very odd.* But hear me out. I never thought it defined me in the first place. In fact, I'm sure it doesn't. However, I think sometimes my JRA is all people see of me. Wrist splints and a slight limp can be the first thing people notice. But that doesn't mean it defines me, that means other people don't look past it.
      When people tell me that JRA does not define me, even when they're trying to be encouraging, it is somewhat offensive. It implies that I act like it does, or thought it did. I mean for goodness sake, half of the people who say that read this blog. Clearly they never read "Defined".
      Also, by saying, "Your juvenile arthritis does not define you," when we are not even talking about juvenile arthritis tells me that it does define me. What if the last thing someone told you was that your disease does not define you? Is that the last thing you would want to hear from that person? It obviously defines me if someone brings it up randomly! Was there really nothing better to say, nothing about who I am as a person and not as a disease?
      Additionally, no one ever tells you what does define you when they say that arthritis doesn't define you. If my arthritis doesn't define me, what does? Is it Jesus? Is it music? Is it writing? No one ever tells me. I want to know. If you don't think arthritis defines me, what do you think does? After all, what does define you is more important than what does not. If you look up a word in the dictionary, it doesn't tell you what it isn't. It tells you what it is. So if you are going to try to tell someone that they are not defined by their arthritis, you better be ready to tell them what they are defined by.
      I do not mean to be so angry. I just get really worked up. I'm truly infuriated right now, because I see this happen so much and I see so many broken hearts because of it.
      As with all things, there are exceptions to this. If someone says something along the lines of, "I am no greater than my disease,", then it is perfectly acceptable and even admirable to say, "Your disease does not define you." It is when it is random and spontaneous that it stings so badly.
      Writing this, I debate whether I bring on this "encouragement" myself. Do I focus too much on my arthritis? Should I even be writing this blog? Why not just keep to myself and pretend my pain doesn't exist? Why do I allow my phone to buzz with new emails, texts, tweets, and alerts relating to my arthritis? Why not block it all out? Am I shaping my identity around my arthritis?
     Personally, I think I should be able to keep a blog about juvenile rheumatoid arthritis without being told every five seconds that my arthritis does not define me. Because I know that, and I always have. I'm just scared that I'll let it, intentionally or unintentionally.

Love,
Rachel

*As much as I hate it when people tell me that my JRA does not define me, it is NOT better to tell someone that their arthritis does define them. In fact, it's a million times worse. Luckily that has never happened to me.