This morning I cursed my disease. The genetic disease Neurofibromatosis (NF) is always with me, as are the 30+ tumors on my body. I am a strong woman, but there are days when it defeats me.
I don’t sleep as heavily as in years past. Regular bouts of insomnia have interrupted my sleep over the last six months. Stabilization is slowly coming, and I’m grateful for that. This week was a good week, so I am surprised at this unsettling feeling. Sometimes that quick moment of stability is disrupted and I cannot contain my sadness and frustration.
This morning I awoke too early and anxiety attacked. Thoughts raced through my head that I didn’t want to think about (friends, family, health, past, future, present…). But the worst of it was the bleeding coming from one of the small tumors on my face, just to the left of my chin. “Fuck it!” I said as I popped out of my bed. Who wants to deal with that at 6:30 am on a Sunday morning? It’s a little thing and was not profusely bleeding, but this is a tumor that is normally soft. Yesterday it became hard, is sensitive to pressure and is an open sore. This has happened before, as I am sure it will happen again. Usually the swelling dies down and the tumor returns to normal. Though the bleeding was not great, it is certainly concerning…and in my anxious state bitter thoughts rang toward my lack of health insurance. Bitter thoughts spewed against this disease.
I’m growing weary of this disease that changes and progresses. I must deal with it the rest of my life as I continue to live a public life in the world. In spite of my embarrassment for a suddenly larger irritated tumor on my face, I must wake up and go about the day, talk to the people who saw me the day before, visit the grocery store to buy food… My strong faith keeps me going, most of the time.
When I woke up this morning I wanted nothing to do with the world or anyone I know in it. Instead, I wanted to hide all day and obliterate the tumor from my body. I didn’t care enough to pray, either. It wasn’t just this morning—it bled last night before bed, too. I watched the sunrise, with a tissue clutched over the tumor, but met anyone’s presence with me as an intrusion. Obliterating the tumor and hiding are not healthy options. But it isn’t easy to go on. Oh, I love life and those who share it with me and all those I have yet to meet in this life. I don’t know what to do, except continue to wake every morning and call myself beautiful, even when my tumors ache, change, grow, or cause discomfort.
God give me the strength to arise graciously even when I curse what is happening to my body!
Yet as I write these words, I know of a suffering even greater. I am mourning the loss of someone I only know through acquantance from my hometown. A young man and his family grieving the loss of his father—suddenly, due to a brain aneurysm. sigh.