We’re all about fighting, whether it’s our disease, the stigma, or the chance for the future we want. We fight until we’re blue in the face, knuckles bleeding, and if you’re like me, having a small asthma attack as you steady yourself for the next round. We don’t have normal boundaries: the unfairness is inside of us, it’s not something external that happened to us as much as it’s something happening within us. In the blessings of attributes, we got a little too much courage and someone else’s wisdom.
Can you really have too much courage? I’m not sure. But I know that for myself, the line between what I can change and what I can’t is blurred, I drew a line in the sand but it’s been washed away with the tide. I can change certain aspects of myself - my behavior, the shoes that I wear - but I cannot change my disease, no matter how determined I am to do it. But that doesn’t mean I don’t try, it doesn’t mean I don’t reject asking for help when I need it, and it doesn’t mean that it’s not so painful when my greatest wish doesn’t come true.
When I first heard the infamous quote, I was offended, because it was a grandparent and I was sure they meant that it was my fault for having Crohn’s and ‘allowing’ myself to be sick. I felt responsible for the ulcers, responsible for the pain, responsible for the worried looks on my parents’ faces. But as I got older and got sicker, as I decided to have surgery and went back to school and raised my hand before the question was asked, I wondered and still do if I really know what I can and cannot change, what is really within my power and what is not. The simple answer: my attitude is within my control, my disease not so much. The complicated question: where does one begin and the other end? If we’re supposed to accept what we cannot change, then why does letting go sometimes feel like giving up?
Now that I’m home and have access to a kitchen again, I have been busy cooking and baking and tasting my creations. I was leafing through a cupcake cookbook, drooling at the delicious pictures, and tried to decide which ones to make. But I couldn’t, they all looked so good and I wanted all of them. And so I decided to make all of them. I wanted what I wanted and I was darn well going to do it.
But that’s cupcakes. That’s flour and eggs and sugar at 350 degrees for 20 minutes. That’s not my disease, not my life. I want to do so much in my life and I can’t say no to what I want, I push myself to do it. And I’m happy that I do, because I love every inch of my life and wouldn’t change a nanosecond. But maybe I need a little more serenity and a little less courage to take on the world and my disease, to realize that at the core of my being I am different from a healthy person - not that I can’t accomplish my dreams, but that my lines in the sand keep disappearing while theirs do not.
Be brave. Be optimistic and curious and passionate and fearless and vulnerable and willing to make a mistake. And always be truthful to your body and to your circumstances. There are thousands of days left to be lived, days to grow wise understanding serenity, courage - and ourselves.
Jennie
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