My Experience

Moving On

Dealing with chronic illness is unlike most experiences. It’s something unique, everyone’s experience is different. From talking with my doctors, it’s apparent that a lot of patients feel stuck in their circumstances. Having had an appointment that lasted over three hours yesterday, I find it important to have my physicians understand my goals. Goals are something sacred to me. In some situations, I am hesitant to set goals or objectives. If I feel unsure of whether I can make a goal, I fear failing. Leaving this lengthy appointment with lots to think about, I began to evaluate what I want for the future. For the first time in my life, I don’t have a ten year plan. I don’t have any plans. I’m letting life take me on it’s own little journey. 

Being on a journey like this is taxing. It’s filled with ups and downs. There are several unknowns, disappointments and triumphs. Setting goals when you don’t have a lot of control can pose a difficult challenge. Any difficult challenge is one I’m willing to take. There’s something about beating the odds that really gets me excited. Yesterday, I was told that moving abroad again in eighteen months was a stretch (at best). I politely smiled and looked him in the eye and said firmly, “This will not stop me. It’s annoying and a barrier but it will not keep me from living my life.” I find it hard to imagine letting something so random with astronomical odds rule my life. That being said, I’m not going to put my life in danger. I’m not going to act in a way that’s not in my best interest. Suddenly, I have an intense hunger to set goals.

Maybe it’s hearing that I can’t do what I want. Simply the word no lights a fire under me. It’s more than that. I am passionate, I always have been but I’m not sure where that passion will land. Right now it’s floating. Waiting, lingering, ready to pounce on an opportunity that sparks intense joy. I want to explore the world, the notion that my illness would stop me is preposterous in my mind. I may have a lot of medication and Crush in tow but most countries know how to deal with basic medical emergencies. I’ve had so many people tell me no. My dreams in high school were too big or too out there, somewhat unrealistic but I pursued them. I don’t need realistic, I need possible. 

Where will my passion land? I guess that’s my own unknown. I know what my original dreams are and they have a special place in my heart but they have shifted. Experience comes with understanding. I am not the same person I was a year ago. Those dreams are still there but they’re different. I want to move abroad. I want to study. I want to throw caution to the wind (in the safest way possible). I want to beat the odds. My doctor asked me at twenty if I felt young or old, I replied, “I guess it depends on the circumstances.” I guess I don’t believe that, I am young. I have my whole life ahead of me. This illness has not stunted my growth, it’s intensified it. It’s paused my objectives and overall goals but has not paused me. I refuse to be stuck in some purgatory. I’m ready to move on from this box. Most people I meet only know I have an issue because Crush is by my side. Even then it’s perplexing because I appear normal. My point is, I am normal. Illness is something I experience, it’s not who I am.

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