Monday, June 5, 2017

To Feel Loved

      Recently, my mom and I were discussing that often when something tragic happens to someone or a difficult situation is forced upon them, we cannot make them feel better, we can only make them feel loved.

Enjoying a vegan cupcake with one of my best friends from
Governor's School! Shout out to Hannah for driving 1.5
hours just to make it to brunch. So much love for this girl!
      I have been considering this notion a lot lately. Often our tendency is to try to fix people, when in reality all we should be trying to do is love them. I do not think the tendency to want to "fix" people is inherently a bad thing. When I see someone in pain, especially if their pain is medically related or similar to mine in some way, I immediately want to take away that suffering by any means possible. I think most of us do. I think that desire in and of itself is a form of love.

      When fixing a situation is possible, it is by all means the way to go. When I could not open my sandwich bags at lunchtime because my hands hurt so badly, my friends fixed the situation by opening them for me. But we are not divine, and often "fixing" someone is impossible. Nothing that I do or that anyone else does is going to stop the arthritis that tears apart my joints or the pain that often swarms over me. Even the best friend in the world could not remove the fluid from my joints.

      Despite almost never having the power to turn a situation around, we always have the power to make someone feel loved. When I think about the dozens of people who have helped me to cope with such a cruel illness over the past seven or eight years, they all proved to be such valuable members of my support system not because they tried to shove a bunch of "magical cures" in my face, but because they made me feel loved even when I felt like a rotting corpse (just being honest here). They asked uncomfortable questions and waited patiently as I stumbled for words. They told me I was beautiful when I hated a body that was destroying itself. They gave me hugs and tissues when I cried. Many of them cried alongside me.

     Truthfully, I also remember people who became frustrated as my disease stopped me from doing the things I wanted to do and from being the person that I wanted to be. I remember friends who were less patient and less forgiving and who became annoyed when my coping was less than perfect. I am pointing this out not because I harbor any resentment, but simply because if you are suffering it is important for you to remember that even if the vast majority of people choose unrelenting love, the fact that others do not does not reflect poorly on you.

     Last Monday was my eighteenth birthday. Normally I do not plan large gatherings, but this year I decided to hold a birthday brunch with some of my friends. I went to bed that Sunday excited to wake up and spend a lovely day with so many people that I care so deeply about. My body jolted me awake at 5:53 a.m. that morning, and I threw up almost immediately. It's my birthday, I thought, feeling a pang of self-pity that I try not to allow myself too often, Can't I get a break? I instinctively looked in the mirror while washing my hands. My eyes were bloodshot from throwing up. I was still nauseous. I can't go to my party looking like this, I thought.

My dear friend Alana!
     My first moment of adulthood was spent throwing up and staring at my own bright red eyes. I hope this doesn't sound too sad. I was sad that morning, for sure. But I had a lovely brunch with my friends and my eyes returned to their normal white and blue state before it began. Looking back on that morning now, I think in many ways it is so representative of the complexity of illness in my life. While I certainly felt weak in the midst of it, upon reflecting on it some more I feel strong. There have been thousands of tears along the way and more pain than I ever thought I could bear, but making it to eighteen is an accomplishment. I have been to more physical therapy appointments than anyone should have to attend in a lifetime, but I fought through them and regained range of motion in my joints. My elbows and knees straighten now. I run 3.6 miles almost every day. I can wake up and throw up and blood can rush to my eyes, and then a few hours later I can spend quality time with people I love, showing no signs of illness. That is something to be proud of, even if it is not ideal.

     Realistically, I know that my story with juvenile arthritis is not over, even though I am an adult now. Wouldn't it be nice if it just went away when a person turned eighteen? I think I would have thrown a brunch for the whole town. But I have been fighting for seven years now, and although I am hoping that I have way more than seven years to go, I think I can do it. We don't need perfection. We just need to feel loved.

      The past week has been filled with many ups and downs as far as the nausea situation, including a period of time in which I was unable to hold anything but small amounts of water down. Wednesday was a lonely day. I was alone for eleven hours due to some atypical circumstances, and all I could do was throw up and watch "America's Next Top Model" with glazy eyes. There are only so many hours a person's body can handle this before you just start to lose your mind and cry when Tiffany's photoshoot doesn't go well.

A photo I took with my dad following my
senior year acceptance into UNC Chapel Hill.
It is suddenly very relevant!
     On Friday I attended college orientation. During one of the presentations, the woman leading it asked the large group of transfer students, "If you see someone who needs help, and you help them, what would that be called?" She waited for us to shout out the answer.

     Apparently the actual answer was "active bystander." But a few rows down from me, one of my new peers loudly called out, "Decency." I could not help but agree. Why do we consider helping someone to be an extraordinary act of kindness, when really it is just human decency? We have to look out for each other, even if it takes up our own time or energy. We have to ask each other how we are doing, and to mean it. There are no other options. There is no other decent way to live.

      I can name dozens of incidents in which I wish I had loved people more than I did, although the actual number of times I have failed to live up to the love shown to me is countless. I like to think that I am getting better at loving people. It is probably way simpler than I am always trying to make it. So far I know that it involves a lot of hugs, a lot of time, a lot of hard conversations, a lot of listening, and occasional cards and notes and letters and gifts. Maybe we can all make it a goal to love people today just a little more than we did yesterday. Maybe we can apply that goal to every day of our lives.


  1. Proud of you. I need to run 3.6 miles a day. I'm so out of shape and I have no excuse.

  2. What an inspiration you are, Rachel! Your message is a strong one even for someone not dealing with a debilitating illness. Our lives are certainly enriched by being loved but also by loving. Your wisdom far surpasses your age and your courage surpasses mine. I do not think I could deal with what you describe without feeling anger. You express none of that and it is truly inspiring. For a cure for this disease but good treatment in the meantime is what is I pray for for. You and all who suffer with it. Blessings to you.


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