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Reconciling My Dreams and the Reality of a Chronic Illness

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The older I get, the more I am convinced that life becomes hard because of memory. On the days when I feel low, it is because I compare myself to who I once was. The reality of a chronic illness is that you will observe your body change from day to day. Depending on how many spoons you have, you may be in a flare-up for weeks at a time. In our society, we are forced to put pressure on ourselves. In many ways, merits and daily achievements are applauded. If you spend days in bed because you are sick, some people may think you are lazy.

It is hard not to look back on your life, especially when you are fully aware of who you were. In my case, I slowly watched my abilities and energy levels diminish over a 10-year period. It almost feels like a distant memory when I look back on my short career as a cook. I don’t remember a time when I did not have to push my body to function each day. Though it has become my new normal, it is also a point of sadness for me because of how difficult normal tasks have become.

This week was rough.

I found myself crying today. At the beginning, it was shocking because I do not think I have cried due to pain in a few years. I did not even cry when I opted out of taking pain medicine after one of my surgeries. The feeling that spurred the tears was a mixture of stabbing pain, hopelessness, numbness, tingling and fatigue. I was paralyzed by what felt like a tight hug holding me in place and I could not help but reflect. How did I get here?

Let me rephrase. I knew the chronological steps that got me to that point, but not why it would hurt. The nature of being undiagnosed is that things just happen with no explanation.

Though I have a wheat sensitivity, I pulled myself together to do the only thing I know how to do well — make pastries. I brought out all the ingredients in the kitchen and started dreaming. Most times I do not bake for myself. I do it because it is familiar and mainly because it was my dream. When I was around 20, I visualized myself in my own bakery making whatever was interesting to me that week. That dream seems further and further away as my abilities wax and wane.

The reality for now is that my body trembles and waking up with energy is a seemingly distant memory. That being said, I still have full control over how I react and carry myself through each day.

Somewhere within this reality, I have to find my dream.

Originally published: May 19, 2020
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