Have you ever lived through something you thought was commonplace only to realize it wasn’t? For the last few weeks, rare illnesses have been on my mind frequently. Partly because February 28 is World Rare Disease Day, and I have several rare conditions. The most debilitating one is Mast Cell Disease. It’s extremely rare, life threatening, and incurable. These last few weeks have been a challenge because apparently, my mast cells think Rare Disease Day means party time. When they “party,” I have almost constant severe allergic reactions, often for no identifiable reason. Because I live this every day, sometimes I forget how rare it is.
I have been blessed with friends, who care. They check on me, and pray for me. They care about me not just physically, but emotionally as well. They want to understand what is going on. I realize connecting with friends who deal with this same rare illness is priceless. It helps me to know I’m not alone, and all these bizarre things do happen to others as well. When you live a rare life day in and day out, it becomes your “normal.” Having those who experience the same thing helps to not feel so isolated and alone. Being able to talk in medical terms instead of a long explanation of symptoms helps. Sometimes it can seem like a foreign language. There is a strange bond that forms. No one wants to be in the club belonging only to those with a rare illness, but if you have to be in the club, one of the greatest gifts is the friends you make. A few weeks ago, I also realized the importance of having friends who don’t know what I go through, who don’t experience it, or who aren’t familiar with it. Sometimes I need a reminder that what I deal with isn’t normal.
I tend to be talkative, as in I’m usually talking more than I’m quiet. I’m so grateful for friends who ask deep questions. They make sure I don’t put up a wall and isolate myself. They build bridges and come to me. I’ve had a number of conversations with friends who want to understand what is going on beyond the surface level. I’ll never forget a midnight conversation with a classmate from high school. She wanted to enter into my world. Last week was another one of those moments. My friend, Angela, was given a crash course in the biological workings of mast cell disease when I had one of those moments where I had to talk it out. It wasn’t until at least a half an hour of talking that I realized just how much she was listening. She was understanding terms very few people understand. It’s because she hadn’t just been listening that day; she’s been listening for as long as she’s known me. She wanted to understand, and realized I needed an outsider to enter into my world. I needed to know I was heard and someone cared about the tiny details. She said it helped her to understand what I go through and to know how to pray. She chose to be here. She wanted to understand as much as she could. That was A Jesus Moment, a moment when I realized just how much God cared for me by giving me someone who wanted to learn when I didn’t know I needed that gift. I needed someone to choose to enter my world.
That’s exactly what Jesus did. Think about that for a minute. He chose to literally enter our world as both fully human and fully God. He could’ve just skipped 33 years, go straight to the cross and resurrection. He could’ve also spent His entire life as a carpenter. At least He’d have a home, but He didn’t. He chose to enter into the lives of the poorest people in Israel. This verse shows His life and the lives of those who followed Him.
“As they were walking along the road, a man said to him, ‘I will follow you wherever you go.’ Jesus replied, ‘Foxes have dens and birds have nests, but the Son of Man has no place to lay his head.’” Luke 9:57-58 (NIV)
To truly be Christlike, we must venture into a world that is not our home, and share His love. We must choose to enter into the unknown world of someone else.
What does that look like for us today? Are we to become a nomad physically living in the wilderness? While some people do have a calling to missions and physically living in a world not their own, each one of us has that chance one way or another. It may mean having a conversation with someone who comes from a different background. It could be spending time volunteering out of your comfort zone. It may mean letting a friend explain what she’s going through. When we do that, we open ourselves up to amazing friendships. We tear down walls and build bridges in their place.
Those who are going through something outside of the norm, also have a responsibility. When Angela and I met, it was because we did have things in common. We were taking some classes and group coaching together. We have some similar goals for our lives. She truly lives up to the name of helping others be Empowered for Growth. I could’ve kept our relationship limited to just what we had in common. I could’ve easily shut down Angela and written her off as someone who didn’t understand. It’s true, she didn’t understand, but she wanted to. Yes, she gave me the gift of an amazing friendship, but she also gave me something else last week. Without even saying it, I realized just how rare and unusual my life is. It gave me permission to let my feelings out, something I don’t do very often. It can be hard to let down my guard and cry, but sometimes I need to.
I was reminded of one other conversation from last summer. I posted a picture of me passing time at my doctor’s office Instagram, and I couldn’t understand why people found it fascinating. To me it was normal; it was how I find some fun in what can be a tough situation. My friend told me I didn’t see it because it was my everyday life, but it wasn’t for many other people. She goes to the doctor only a few times a year and freaks out. I go frequently and am posting pictures on Instagram. (I had to resort to Instagram, for some reason most of my doctors remove the markers for the white boards in my room. Excuse me for expressing my creativity. Making balloons out of gloves was getting old.) My friend saw me shining a light by giving others a smile. It made her think about her life, and if I could do that when I’m in the middle of a scary appointment surely, she could be a light as well. Sometimes when you live a rare life, you need to remember to venture outside of your world, and shine a light.
When it comes down to it, we all have choices every day. Will we show Jesus’ love to someone who is different than us? Will we stay where we are with people just like us, or will we look for those who are different. Being different doesn’t have to separate us, it can serve as a bridge to make our world bigger.
We get to choose what we build. Will we build a wall, or will we build a bridge?
What about you? Do you, or have you lived a rare life? Do you know someone who does? What gifts have you found in friendship with someone who is different? I love hearing from you. Please leave a comment on the blog, and tell me your experiences. You matter!