Quite frequently, I’m asked how I always manage to have a smile on my face despite all my medical problems. The truth is I don’t but oh how I wish that were true.
I hide the pain, discomfort, fear and anxiety I have about living with an autoimmune disease until I am alone in my home. I console myself because, deep down, I know no one can change the fact that there is no cure for what I have and I will be ill over and over again.
When I sink into the depths of despair I see nothing but a past filled with agony, dread, and wasted promise. The depression about my helplessness somehow gives me amnesia about all my accomplishments, all the joy in my world.
I wail in my room trying to expel my anger and rage for being trapped in a frail body. I sit up, alone in the darkness, night after night waiting for morning. I toss and turn, haunted by choices or lack of them, like how far can I move away from a hospital? What can I wear that will hide my ice packs or my surgical scars? When no real answers come, I drop to my knees and pray. I don’t ask to be healed but for the power to endure.
In the throes of my struggle to release myself from my repetitive hell, I try to convince myself there are brighter days ahead. I repeat mantras to myself: “don’t give up,” “You have a strong mind and that’s greater than a weak body,” “You are greater than your condition,” “You are tough and independent so you never give in;” and “You have too much left to do to let this beat you.” Eventually, I get sick of my own self-pity and my thoughts shift to finding a way how I can thrive even when my body does not. Only then am I able to clear my mind and I sleep; that is my seed of hope for the next day.
I covet that seed and I pray every night before I sleep that it will grow. And, it does slowly, allowing each day to be easier than the one before. I go from sitting on the toilet to style my chair and brush my teeth to standing while I do it all.
Finally, when I can walk with my chin up, tears dried, regrets buried, pain muffled, fear repressed, and body stitched together as best as I and my doctors can; I resume my “I’m just like everyone else” routine. I begin again, knowing that any time; I could be in the depths of despair again but I can and will rise above it, slowly