People often ask me, “How do you feel? Or what is it like for you?”. I usually describe it in this way–I have good and bad days. I try to enjoy the good days, and just get through the bad days.
Yesterday was a bad day.
I have been feeling very tired and having low energy for the past week, most likely because I haven’t been able to sleep well for the past month. I’m fighting a cold right now, so I decided to stay home to rest. In the middle of the afternoon, when I was alone at home in the quiet and stillness (a rare occasion in this house), I broke down in tears. Sitting on my mom’s lazy boy chair, in a fluffy pink robe, and a runny nose, I cried.
Perhaps it was the realization that my life has dramatically changed. This is how I am about life. I make huge decisions, and I feel the impact of them much later. Well, this week, one month after my departure, I felt it. I was tired, frustrated, and I felt defeated.
Most days, I feel determined to tackle this new part of my life, or as I shy away from saying, this ‘disease.’ I haven’t become fully comfortable with saying that word. Disease. But some days, pity creeps up on me. I don’t know if I have fully accepted the fact that I have a disease. Sometimes I feel bitter and resentful. I don’t want this disease, nor the change it has brought to my life. This disease is not me. I don’t want it to define who I am. But sometimes, the physical impact it has on me beats out the fighter in me. It makes me feel weak, unmotivated and unworthy. Sometimes I resent that I have to live with caution and responsibility. That I have to consider things that most people don’t. That I must pay such close attention and such care to the foods I eat, the sleep I get, the stress I take on, the medicine I’m bound by, and the effects it has on so many other parts of my body.
So, I cried. I gave myself five minutes to cry and complain about it. Then, I reminded myself of how lucky I am to be alive, have the healthcare I need to treat this stupid disease, and a family that generously takes care of me and supports me. I stood up, looked over at my parents’ malti-poo who was staring at me with a look of carelessness during my outburst, as she lounged on the sofa and got myself together. I guess that was God’s way of saying, get over it :).