An open letter… to those who are uncomfortable with me, with my Crohn’s:
This evening, I managed to offend one of my favorite neighbors.
It is no secret that I have long possessed an uncanny ability to offend with my honesty.
I was asked to sign a petition to close our street next week for our annual block party. I accepted the clipboard, and as I signed, said I was happy to sign, but doubted that I would be attending this year.
Here, a wiser, more socially skilled person would have either stopped talking, or inserted a little White Lie.
But I can’t do White Lies. They are, by definition, still lies.
And, with my luck, and aforementioned lack of social skills, I inevitably, will be the person who gets caught in one.
So, when questioned by my lovely, innocent neighbor as to *why* I wouldn’t be attending, well… The mouth opened, and the truth came out.
I work ten hour shifts.
I get up at 5am, I schlep to the bus with food for 2 meals during my workday.
In August, I schlep home in 80 to 90 degree heat, around 5:45 or 6pm. Via Tram, via bus, via foot. I’m hot, I am tired, I am schlepping.
I can’t ever attend this party easily, because my 90 pound rescue dog Does Not Play Nicely With Others. The other neighbors have their dogs out, running around off leash, and year after year, on this first week of August National Night Out, my dog is locked in our house, barking his fool head off at the dogs and kids running freely in the street.
And then, the worst, most annoying element of my honesty: my food needs.
Corn on the Cob, chips, Beer, BBQ, salads with dressings, desserts. Typical, lovely, perfectly normal American party fare. None of which, absolutely none, can I eat.
So, in order to attend, I would have to do my schlepping, and my dog prepping, and then feed myself some gut friendly food, and then go hang out with my neighbors.
I love my neighbors. I really do. A great many of them. I adore them, and am honored to know them. But this year, I can’t bring myself to even pretend I would like to go to the party.
So there is my truth. A small sample of my annoying truth.
The open letter part, is this:
I am sorry Crohn’s is such a drag.
I am sorry I can’t join you in a cocktail or a beer.
I am sorry I joke openly about bowel function.
I am sorry it is such a pain in the ass (pardon, no pun intended) to invite me to your home for a meal, because you don’t know what I can or cannot eat.
I am sorry my weight loss and pain scare my husband and my son, and make us a less happy-go-lucky, less spontaneous family to hang out with.
I am sorry that when you see me after I’ve been in the hospital and ask how I am, I can’t give you the happy response you want to hear. I can’t say I’m all fixed, and I don’t have this disease anymore.
Chronic illness is a big drag. It is tiring, and it gets real old, real quick.
Crohn’s disease has taught me a lot about myself, and my new reality, my new truth. I may not handle it everyday as cheerfully or gracefully as I would like, but for that I am not apologetic.
Walk a mile in my shoes. Spend a week with some children with colostomy bags, feeding tubes, or blood in their stools. Hang out with some teens who take painful injections to their bellies or legs every week. Or the ones who miss school for IV infusions. Or a frightened parent of a child with Inflammatory Bowel Disease.
Then we can talk about that corn on the cob.
Sincerely, Krabby KrabApple.
I love and honor your truth! I think others will have a better understanding now that you’ve shared! Keep on keep’in on Apple.
Thank you, Julie! And as always, thanks for always being such a strong support!
LikeLiked by 1 person
This is true for any of us who have a chronic problem, be it pain, depression (which goes with the pain), food allergies (and not hippie food allergies, actual life threatening acute phase reactant call 911 allergies), kids with severe asthma, heart problems, and it goes on like this. Some of us isolate ourselves in real life and turn down invitations but you know what? I’m not sorry. I’m not sorry that my dad wants to try a new restaurant where he knows damn well the good will kill my husband. I’m not sorry that I didn’t eat the fruit cakes sent ever year for Christmas that would have killed my husband, and unpasturized cheese when you know I’m pregnant? Sorry no I don’t appreciate that. In fact I’m not sorry that the neighbors would be offended if I wanted to go to be with my kids at 8 pm, while their unsupervised teenagers get drunk until 1 am and end up puking in my bushes. My workdays aren’t long now, but I pulled 30 hour shifts taking care of critically ill peeps when I was myself having a high risk, complicated pregnancy. So I’ll say it a different way Apple, “fuck you all you judgemental folks who have it easy and don’t understand the burden of chronic disease, and the burden of caring for others who are ill, even sometimes, you are sicker than your patients.” It’s a commitment that commands respect, and if you don’t know what it’s like, don’t care to ask or are so naive these things offend you, step off. It might be your life I save someday in the hospital, when I’m in sick and in pain and try to keep it hidden from you.