Upon my return from Philadelphia this past weekend, I dove back into helping my grandma move into her new place along with family members and friends. This past weekend was such an amazing time in Philadelphia as I toured the Janssen BioExperience with my fellow IBD advocates. It was a time of research, sharing, friendship and advocacy. But sandwiched between that were my airport trips which were nothing short of frustrating.
Having an invisible illness or disability while under the age of 65 is beyond frustrating. Mostly because I feel I have to constantly battle to legitimize my need for assistance. It doesn’t matter how dark my sunglasses are, how low my hat is or how far into my phone my face is…I can still see the stares and hear the whispers as I move through the airport in a wheelchair. And while traveling, more often than not, I need a wheelchair to get through the terminal and security. I’m not embarrassed about being in the wheelchair, I’m embarrassed by how people react and sometimes make my child feel. I get frustrated that I’m always defending myself to some ignorant person. This trip was no exception. I actually had a woman in her late 70’s/early 80’s scream at me, point at me and tell me I should be ashamed of myself for “stealing wheelchairs from people who really need them.”. She called me lazy, stupid, and a child of the devil. All from the fact that she didn’t know she could request a wheelchair and there were no shortage of wheelchairs. It was just that I had a wheelchair pick up prearranged and she didn’t. She got mad that the attendant told her, she needed to get up and a wheelchair would come for her soon, that this particular wheelchair was for me. I felt like an asshole, having to ask this woman to get up from this chair so I could make my flight. I felt like an asshole that I didn’t have the ability to get through the airport on my own two feet because my back just wouldn’t allow it. I felt awful that she just couldn’t understand that my disability was on the inside and it was real. I felt like an asshole for learning how to smile when I feel like I’m dying.
So, I get home. Grandma needs moving out of the old place and into the new. But, I’m barely moving. Not only am barely moving, but I’m damn near living in the bathroom. I feel the pouchitis creeping up over my shoulder and it’s roused the arthritis. There is a terrible party happening inside of my body right now. But there are some things I know I can do and my grandma totally gets it, so she hands over duties she knows I can handle. I execute. All while working, dropping/picking up Jax from school, and dog sitting for my mom who is on a turn around work trip. But somehow my lack of physical labor (on this day), has been equated to a personal choice to not participate except to “bark” orders to a particular family member who decides to let me know exactly how he/she feels. Now this isn’t the first time this person has had an aggressive opinion of my lack of physical participation. In fact, if you have ever listened to this person argue with me you would conclude that I am not only a lazy individual, but I also feel like I’m better than most, I’m a bad mom, I’m barely an adult as I have to constantly ask for help, I’m a nag and a bore.
Now this isn’t anything new. Since becoming sick and becoming a mother, I have had my fair share of people emailing me, tweeting me, yelling at me, and finding as many ways as they can to communicate their opinions about my inadequacies. But usually it’s from a stranger. Someone who has not a clue as to how and why and when. Not a clue! They just don’t get it. And usually I’m quick with the knowledge or quick with a snap back. But not that night. It felt like a blow straight to the chest. Sitting their battling against my body and someone who has seen me in the trenches. But here we were standing in front of each other and this person looked me in the eye and said, “Why don’t you stop talking so much and actually do something for once. Go do something. Go work. Just shut up.” There was nothing I could say. My feelings were actually hurt. It felt like an actual physical blow to my body. For the first time I was reduced to tears. Someone had actually found a way to get through my armor and penetrate me to the core. It wasn’t so much his/her words right at the moment. But I think it was the realization that this wasn’t the first time this person has said that exact thing to me. And it made me think, “This person actually feels this way about me.” . Despite seeing the truth behind my invisible disease, they still feel some kind of way about me. This person, who I loved, actually doesn’t care about me and sees me as half a human being. I couldn’t stop the tears from coming then.
So, what to do then? Continue to cry and feel sorry for myself? Or look inside and see what I could change? Well, that is it, isn’t it? What can be changed about my physical contribution to society and my family? Nothing. I can’t change that I get sick. I can’t. I’ve tried and listen, that shit didn’t work. Literally! I can’t help getting sick. I can’t help my physical limitations. And I can’t predict them. Period. But here’s the difference. I’m still trying. I’m still going. I’m still finding a way to contribute within in my physical limitations. Not, I can’t pick up a box. But I can run an errand. I can fold a blanket. Somedays I can’t fold a blanket, so I’ll make a phone call. The point is, even during my weakest moments physically, I’ve found the mental strength to find a way to persevere. I may not be able to be on call to do whatever tasks are asked, I am still able to perform more tasks in time I’ve dropped Jaxon off and lunch time, than most able bodied people. Why should I continue to apologize for a disease that has a bucket list that includes the objective to make my life a living hell. Someone’s lack of compassion or kindness can not make me into a shrinking violet of sorrow and pity.
The daily fight against your body and the rest of the world is tiresome. But know this. On your weakest day, you are still stronger than most. And that counts for EVERYTHING!