Dear little brother,
You know I love you very deeply because I’ve told you that countless times. You know you are the cheese to my macaroni and the peanut butter to my jelly (and you really are the peanut butter, because in a peanut butter sandwich the peanut butter helps the jelly stay in place better and not fall out of the sandwich), but you’re also like the tubing to my IV bag and the tape to my bandage.
Why do I say it like that? It’s because it’s true. You’ve lived a life no sibling should have to live. You’ve lived a good part of your life watching me fight for my life. Why? Because the disease, gastroparesis, is literally starving for a cure. Many people who have been diagnosed with gastroparesis have literally starved to death. You’ve watched me get deathly thin. But you never let my thinness stop you from hugging me. You’ve watched me in my good times and my bad times. Yet you’ve always watched with a love so compassionate. So you are like the tubing to my IV bag, because if I didn’t have tubing connecting me to the IV bag I couldn’t get what was in the IV bag. And you’re the tape to my bandage, because without the tape the bandage would fall off.
And I use that language because that language is a part of our lives because I live a life with a chronic disease and you live the life of a sibling of someone with a chronic disease. They call my chronic disease gastroparesis with dysmotility of the intestinal tract and hyperalgesia. In simple turns 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. But I guess you, little brother, already knew all that because you’ve lived your life knowing me. So let me tell you some things you might not know or have forgotten.
You, little brother, 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. You told me that everyone said I had an eating disorder and you didn’t understand why. You were confused. So I tried to explain it to you. I told you I loved food and being able to eat food. Except when I did eat I would then be put through hours of torture. Where 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, 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 grew up going to hospitals. Not because you had appointments, but because I did. So you began to hate hospitals and going to them. But that hasn’t stopped you from visiting me when I’m in the hospital. Every single hospitalization you’ve come to visit me. 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.
Thank you for spending so many years going to doctor appointments with me. For being my playmate in the waiting room. For being there to remind me to act tough and be brave.
Thank you for treating me like a normal person. 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. You see living with a chronic disease you get used to people treating you differently because you’re sick. But all you really want is to be treated like you are a healthy person. I don’t want to be rejected from groups or not be asked to do different things. If I can’t do something I’ll tell you, but until then please don’t assume I can’t do it. And you, little brother, have never assumed that. 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, thank you for acknowledging I have an invisible illness. An illness, that in some stages makes it seem like I’m healthy. But when people doubt I’m sick or that I can’t drink or anything else you’re quick to defend me and stick up for 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 are completely healthy and that there is nothing wrong with you. You don’t want them to believe that you’re pretending or drug seeking or crazy. And gastroparesis isn’t the only invisible illness there are countless others like psychological diseases, bleeding disorders and nerve dysfunctions. We aren’t faking when we saw we’re sick and we want you to believe us, not doubt us. 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. He’s shown me that 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. I couldn’t just stand by knowing there was nothing I could do to ease your pain. 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’ve learned to tell when I’m in pain for you’ve learned to read my eyes. 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 without you, I wouldn’t be the fighter I am today. Without you little brother I wouldn’t have the motivation I do today to battle this disease. I probably would’ve given up long ago, but you’ve given me a reason to press on. 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 an opportunity 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 a friendship. One of the most precious friendships I have. I’m honored to call you my best friend, little brother. A friend that I know I’ll have for a life time. Because you’ve made the decision to stick by my side through thick and thin. Life has tested our friendship beyond belief, but you’ve never given up on me.
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? Together we’ve tackled numerous challenges and together we’ll tackle more. We’ve climbed mountains and floated down rivers. No matter if it’s hard or easy, together we’ve accomplished so much and achieved so many victories. So here’s to many more years together. Years that will still hold challenges, but that 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.
Forever and always I’ll love you little one. These days I’m not the one who picks you up anymore because you’re so much bigger and stronger than me now. But in all honesty that makes me feel safer for I know you’re by my side ready to catch me if I fall. And I know that if I feel like I can’t continue on in my journey, you’re there to carry me until I can once again get my feet under me and continue walking this path of life. To the moon and back and far beyond that’s how great my love is for you. And as a rendition of what my favorite woodland creature once said, “If you live to be a 100, I wish to live a 97 years minus 301 days so I’ll never have to live a day without you” (Winnie the Pooh).
Thank you for everything you’ve done and you continue to do. Thank you for being who you are, my carefree, rock-climbing, good looking little brother. 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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