I wore my infusion backpack to my third day of work at my new job this week.
“Why don’t you take your backpack off? You’d be able to move around a lot easier.”
“I can’t. It’s attached to me.”
And just like that, I have become “The Sick Person” at my new job.
“Are you sure you can carry that?” my manager asked me later when my arms are filled with an overflowing bin of dishes.
“I got it,” I shoot back instinctively, unintentionally defensive.
My ostomy, my illness, my disability — it’s all normal for me. It makes me who I am, and it’s a central part of my life.
Sometimes, I find it hard to be my genuine self around new people until they know about my disability.
As you know already if you’ve been reading my columns, I’m a naturally extroverted, very open person. I love talking to people, and usually when I do, my life automatically becomes their business, whether they ask for this burden or not.
It’s hard to explain, but my illness is so much a part of my naturally extroverted personality that I often appear shy until I have a chance to bring up the fact that I am sick.
I’m not shy — in fact, once you get to know me, you’ll wish I’d shut up. I’m just disabled.
That said, I was both eager and nervous to tell my new coworkers about my illness, if not to spread awareness about it whenever possible.
Showing up to work with my accessed port and IV backpack in tow was my foot in the door; and one day, the incredibly nice server on duty, T, inquired about my illness.
“I didn’t want to ask,” T whispered when I began explaining the reason for my ostomy.
“I’m very open about it, don’t worry,” I assured her, smiling under my mask.
As I explained to her why I can’t really eat anything on the menu and that I can’t absorb much — y’know, the usual spiel — her eyebrows turned inward with pity.
“Wow, I can’t even imagine what that must be like. I’m so sorry you have to deal with all of that.”
I’m used to this, so I hide the wince. “It’s OK,” I said. “It’s my normal, I’ve never known anything different.”
She seems to consider this. “But still, gosh, that’s gotta suck. I’m sorry, hun.”
I’ve already gotten used to T’s personality, her organic banter that she seems to have with everyone, even the customers. I recognize a fellow extrovert, so I don’t immediately take offense as I normally would.
But I hate being pitied — or worse — reduced to inspiration porn.
Me just living my disabled life is not for you to find inspiration in. I have no choice.
As you may have guessed, this is far from the first time I have received pity or special treatment after disclosing to others my disability.
It didn’t even occur to me until recently that a few of my columns may have garnered more pity than I’d intended.
Usually, I try to offset the burden of my illness with humor. I want people to joke about it as much as I do. When you read my columns, I want you to laugh along with me at the absurdity of this disabled body of mine. My goal is not to make you feel sorry for all that I endure.
For example, want to hear something hilarious?
Last week, I got a steroid shot in my hip because I can’t take oral pain medications anymore after my gastrointestinal bleed.
I needed the steroid shot because my rib cartilage has been painfully inflamed for about three weeks now, only I never knew about it because I was repeatedly denied care.
So, drinking an excessive amount of alcohol with this unknown inflammation sent my body into some sort of “flare” (chronic illness jargon for “my body suddenly hates me more than usual for no apparent reason”) and I have been unable to eat even my “safe foods” ever since.
Of course, my GI doctor can’t see me until November in person, or October if I want to go for telehealth.
With the fall semester quickly approaching and my body suddenly refusing nutrition, I’m in a bit of a precarious situation.
Luckily, my gastroenterologist acknowledges this and promised to fit me in August 30 during his lunch hour.
So now I have to work 15 hours a week, get things ready for the fall semester (which for me includes buying a freaking car) and take care of my boyfriend — all on a highly unsustainable calorie deficit.
Isn’t that funny? I think so, too.
I know it seems absurd to wish for a medical device, but it’s times like these when I wish that my parents hadn’t been so hasty to get rid of my gastrostomy tube when it proved more trouble than it was worth; I would really benefit from the safety net and security my feeding tube offered me.
This isn’t the first time I’ve thought about how my life would have been different if the tube had stayed. Wouldn’t I have avoided so much unnecessary trauma around food, so much sickness and discomfort without relief?
I know that I’m remembering life with a tube as something fonder than it was.
I remember getting it removed — being awake for the entire procedure, at 5 years old — and I remember having to drink three Carnation Instant Breakfast shakes every single day for the next 10 or so years to supplement for those lost tube feeds.
As I’m beginning to lose so much weight, my bones make it uncomfortable for me to sleep. I’ve been lying awake and thinking. Nonstop.
Without sleep, my life seems reduced to floating from one obligation to the next, one to-do list item after another.
Insomnia is pretty hilarious too, if you think about it. Especially if it’s pain-somnia.
I bit the bullet and made an appointment with a new gastroenterologist at a new hospital, the closest I could find that listed ostomies under specialties.
This is me taking care of my defective body that has never felt like my own, mimicking my older chronically ill friends and “taking care of myself.” Whatever that means.
I’m not your inspiration. I’m just getting my body from one day to the next, just like you, only mine needs a lot more help. This is not your pity party.