“Put that bag back inside your pants. There ain’t nobody that wants to see that stuff!” She told me, laughter coating her words.
I stuffed my stomach drainage bag back into my pants and glared at her, “Satisfied now?” I said with a small smile.
“I was satisfied before, I was just looking out for all those strangers who stare at you.” She said with a twinkle in her eye.
I couldn’t hold my pretend anger in anymore and laughed. A big full-hearted laugh that made my insides shake and released endorphins in my brain, which made me feel even happier.
I was born with a chronic stomach disease. A disease they call gastroparesis with dysmotility of the intestinal track and hyperalgesia. Therefore, I was used to getting stares from people because of the different pumps or devices I had to carry around with me during the day. At that particular moment in time I also had a bag attached to my G tube so that things from my stomach could constantly drain out, which would stop me from vomiting. But I have to admit if I wore that bag on the outside of my pants it sure didn’t look appetizing. Green and yellow bile mixed with other random bits of stuff made for quite a stomach turning combination. Her reminder was on point since I did try to keep the bag hidden when I went out in public.
But what made her reminder even more poignant was that she had the courage to make a joke about something serious. That’s just one of the reasons I love Eric Emanuelson. She is one of my only friends who has the courage to joke around with me about my medical equipment, diagnoses, and medications.
I don’t use the word courage lightly. I mean it in ever sense of the definition for it takes true courage to do what so many are afraid to do. Yes it makes sense that people are afraid to joke around about someone’s medical things. They are afraid of offending the other person or they’re just afraid to make light of a serious situation. Those are very real fears, but sometimes you have to take a risk to allow someone to feel normal.
Those of us living with a chronic disease have to take risks every day to feel normal. I know I take risks when I push myself too hard, when I make my schedule too booked, when I go for a walk or when I ride a ride a bike. But I do it because it makes me feel normal. It makes me feel free. It even makes me physically feel better at certain times. So I embrace those normal things.
I sometimes pretend I am normal. That I don’t have a chronic disease. That I don’t have to worry about IV’s. That tubes aren’t connected to me. That I don’t have to decide which precious few things I can do in a day because I only have a certain number of spoons per day (see spoonie theory). But then reality steps back in and I acknowledge that those things are a part of my life.. So I make my own normal because in reality is there such a thing as normal? Don’t we all kind of create our own normal based on biases and what we think normal should be? So that’s why I appreciate what Erica does.
I appreciate her having the courage to joke around with me about my medical things because friends joke around about everything. Sure my medical situation is serious and very real, but making a joke about one of my tubes getting snagged on something or how funny it sounds when I vent through my G-tube, makes me feel happy. I feel happy because it makes my situation not feel so serious. Not feel so abnormal.
Another great things that people do for me is let me pretend to eat around them. I can’t eat and receive all my nutrition via TPN (IV feedings). But that doesn’t stop me from tasting food. I’ll chew food and then spit it back out. As gross as that sounds, my family and closest friends don’t have a problem saving a bite of their food from dinner for me to try later. Or when we’re in a home they’re okay if I sit with them even though I’m chewing the food and then spitting it back out. They make me feel like I’m not sick and that’s a great feeling.
I recently spent the night at my friend, Meghan Neary’s house. Before we got to her house we went to the store to find some food for dinner. Instead of just picking out what she wanted she asked me what I wanted. We picked out food and then when we got back to her house she cooked it up. When it was done she split the meal with me. So even though I can’t eat, she pretended like I could and acted the way she would with someone who could eat. By doing that she gave me a gift that she didn’t even realize. She gave me the gift of feeling like I was healthy.
I am blessed with many friends who do the same thing as Meghan. They treat me like I can eat. That I don’t have a chronic disease. That I am just your everyday person. Thank you to all my friends who do that.
So don’t be afraid to make a joke with someone with a chronic disease, just make sure it’s clear you’re joking. Go ahead and invite someone who can’t eat out to dinner with you, because for us it’s about enjoying the company not necessarily the food. Ask someone who doesn’t seem well if they want to go to a concert or go on a trip. If we really know we can’t do it, we won’t, but we appreciate the invite because it makes us feel like we’re being included, regardless of us being sick.
Follow Erica’s example and have the courage not to make the medical things feel like the elephant in the room. Help a person with a chronic disease feel like they aren’t sick. Give them a moment to feel like they can do anything. Tackle anything. Fight anything. Because if you can give them these feelings then you are giving them extra ammunition in their battle.
So thank you Erica for daring to treat me like I don’t have tubes coming out of me. That I don’t carry an IV pump around. That I can do things everyone else can do. Thank you for being you. The amazing girl who has drawn me pictures and sent me letters numerous times. To the girl who gets me to socialize when I want to be a recluse in my house. Thank you for being my friend and making my life just a little better.
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