My journey with Lupus has been long, but the harshest realization is that I am nowhere near the finale. The fruits produced from my illness have been nothing but bitter, this much I figured when I first heard of my fate. However, what I could not have predicted was the adverse effects it would have on the people around me.
For the longest time my diagnosis was somewhat closer to a guessing game. Words were tossed around such as disease, tumor, stress, allergies, and at one point I recollect hearing the word cancer; but due to my doctors unsure tone of voice I never absorbed these words long enough to actually begin to worry. Much to my regret I shared these concerns for my health with my sixteen year-old daughter, who now views me as the boy who cried wolf.
However, I have found the hardest thing my daughter and I have had to cope with is my grocery list of symptoms. My memory is rapidly deteriorating, which probably the most problematic issue in our household. My adolescent is constantly frustrated with having to repeat her plans for the night, and I am forced to constantly worry while she’s gone, because for the life of me I cannot remember where she told me she was going. If I do happen to have a decent day regarding my memory, I will most likely not have heard what she said, because my hearing is also shot. I cannot enjoy the beach, which is a mere five-minute walk from my house, because direct sun exposure will cause me to break out in hives. I have learned to rely on visual cues for parking; my depth perception is so off I find myself only pulled in a few feet into a parking spot, while I fear hitting the curb.
My treatment is a monthly visit to the hospital to undergo a round of dialysis. The chairs are comfy, but that’s no compensation for the way I feel sitting between a terminally ill patient and a woman who has just begun to loose her hair.
My daughter leaves for college in a month, and I know she will feel relieved with no longer having to handle my symptoms. While I am overwhelmed with joy for the new chapter of my daughter’s life, I cannot help but worry about what will happen to me, when at night I lock my front door, and am left alone with my illness.