When you’re born with a debilitating disease, you’re born with health complications. Your body doesn’t wait until you’ve had a long, “good” life to start failing you. I’m young, but I’ve endured almost 24 years of problems and pain. Ethan and I have married for a year and a half, but we’re veterans at upholding the “in sickness and in health” vow. I’m stuck in a season of health complications, but I’ve become a master at cultivating joy in difficult seasons.
Most people think health complications hinder my ability to be joyful. They feel sorry for me because I don’t have the opportunity to live a happy, “normal” life. But this is my “normal.” I grew up in the hospital. Health complications have been my teachers, showing me that hardship and happiness can coexist. Most people assume hardship overpowers my ability to be happy, but that assumption isn’t always correct. Let me tell you this story from a few days ago:
I was staring at my infiltrated IV when a familiar face walked in the room. “Hey, kid,” he said as he walked over to me. “You were just here.” He was right. I had been in that ER three times in three months. As he examined the veins in my arm, he tried to find at least one viable location to place a new IV. “Kid, your arm has been destroyed. I can’t place an IV that’s going to infiltrate as soon as they try to re-do the scan.” With tears in his eyes he said, “I can’t destroy you.” Before he left the room, he smiled and shouted, “The man that was with you last time — your husband — tell him ‘hi’ for me. I’ll see him next time you’re here.”
As I laid in the CT machine with a black and blue arm, I was joyful. Why? That familiar face showed me how much he cared about both of us. In this season of life, people help me remain joyful.
Here’s my point: never underestimate how happy you can make someone by simply showing you care. Send a card. Pick up the phone. Reach out. Remind people that they are seen, heard, and cared for. That’s what most of us really want, especially those of us with a debilitating syndrome or disability.
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