To the Sibling Who Makes My Life With Chronic Illness Brighter
Dear Little Brother,
You know I love you deeply because I’ve told you countless times. You know you are the cheese to my macaroni and the peanut butter to my jelly, but you’re also like the tubing to my IV bag and the tape to my bandage. If I didn’t have tubing connecting me to the IV bag, I couldn’t get what was in the IV bag. Without the tape, the bandage would fall off.
I use medical terms because it’s a part of our lives. I live a life with a chronic disease, gastroparesis, and you live the life of a sibling of someone with a chronic disease. They call my chronic disease gastroparesis with dismotility of the intestinal tract and hyperalgesia. In simple terms, the muscles of my stomach are nearly paralyzed, and the muscles of my intestinal tract don’t move like they should. Plus, I’m super sensitive to pain.
You, little brother, already knew all of that because you’ve lived your life knowing me. So let me tell you some things you might not know or may have forgotten.
You have always believed in me. I remember when they said I had an eating disorder. I remember begging you not to believe them because I knew I didn’t have one. I knew there was something else going on. You believed them at first. But one day you came and talked to me. I told you I loved food and being able to eat food, but when I did eat, I went through hours of torture. Cramps, nausea and vomiting were always present. So this made me become afraid of eating because I didn’t want to suffer. Or if I did eat, I couldn’t just stop myself from vomiting; it just happened. So no, I didn’t have an eating disorder, but something wrong was definitely happening. And then I’ll never forget when your deep, blue-green eyes gazed into mine, and you said, “Well, if you say you don’t have an eating disorder, then you don’t have one, but it sure seems like it because everything the doctors and Mom and Dad are saying makes it sound like you have one.” So in that simple statement, you let me know you believed me.
You visit me in the hospital even though you hate hospitals. You hate hospitals because you grew up going to them (for my appointments, not yours). But that hasn’t stopped you from visiting me when I’m in the hospital. You’ve visited me during all of my hospitalizations to put your arms around me and give me a hug. To distract me for a precious few hours, hours that always seemed to pass too fast. Thank you for bringing sunshine into my hospital room. For taking my mind off of what was going on around me. For being my playmate in the waiting room. For being there to remind me to act tough and be brave.
You treat me like a normal person. Thank you for inviting me to go to parties with you. For asking me out for coffee/tea. For telling me I can come chill at your house with you. For always introducing me to your friends, just like another person, instead of making a big deal about me carrying an IV bag with me. For including me in things without a second thought. When you’re living with a chronic disease, you can get used to people treating you differently because you’re sick. But all you really want is to be treated like you’re a healthy person. And you, little brother, never assumed I can’t do something. You’ve given me the benefit of the doubt and accepted me for who I am, tubes, IV bags and all.
On the other hand, you acknowledge I have an invisible illness. In some stages of my disease, it may seem like I’m healthy. But when people doubt I’m sick, you’re quick to defend me. Living with an invisible disease is a challenge. As much as you don’t want people to treat you like you’re sick, you also don’t want people to think you’re completely healthy and there’s nothing wrong with you. You don’t want them to believe you’re only pretending. And you haven’t doubted me, little brother. Thank you for that.
You encouraged me to write, so I wrote two books, “A Blessing in Disguise” and “Blessings in Hidden Places.” You’ve been excited about each new interview and opportunity I’ve had. Thank you so much for that. My deepest desire is turn the bad of my disease into good for others, and by God’s grace, that has been happening. I believe He’s shown me my disease is really a blessing in disguise. And you, little brother, have supported me through that.
I have to tell you that I’m selfish, little brother. I’m selfish because I’m so glad it’s me going through this and not you. I’m glad because I don’t think I could ever bear to watch you suffer. Yet that’s the exact place you’re in. You’ve had to watch me fight this disease my entire life. You’ve been there when I’ve curled up into a ball, desperate to make the cramps disappear. You’ve handed me a plastic grocery bag when I’ve felt sick in the car and sat there as I vomited uncontrollably. You’ve been there when I’ve passed out. You’ve been there as nurses try to find a vein to start an IV.
You can tell when I’m in pain by reading my eyes. It’s something only those closest to me can do. I can’t imagine what you’ve been through and what you still go through as you watch me fight. I’m sorry you’ve had to go through this with me, but I wouldn’t be the fighter I am today without you.
I don’t want you to have to go through the pain of losing me, so I’ve resolved not to go down without a fight. You’ve had many opportunities to cut me out of your life. To ignore me. To reject me as your sibling. But you haven’t. You’ve worked to maintain our relationship so that it could grow into one of the most precious friendships I have. I’m honored to call you my best friend, little brother.
We’ve learned how to turn this life into a beautiful adventure. It’s not an easy adventure, but since when were easy adventures fun? So here’s to many more years together. Years that will still hold challenges, but will also be full of lots of laughter, memorable moments and exciting escapades.
Living this life with a chronic disease will never be easy, but with you by my side, it will seem that much brighter. That much more doable. And instead of a curse, I will continue to see how my life is really a blessing in disguise.
Thank you for everything you’ve done and continue to do. Thank you for being who you are. Thank you for loving me without asking for anything in return. For holding me. For carrying me. For supporting me. For being my little brother.
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