Medical setbacks are commonplace for those of us with chronic autoimmune disorders. I have lupus and my life is often derailed with flare-ups from this disease. Lupus affects millions of people. My story is not unique.
The last couple weeks have been hell for me with a recent flare affecting my skin and the small vessels in my legs. “Mind over matter” doesn’t work for me when it comes to pain. I feel disfigured, vunerable and isolated. Friends and family can be thoughtful and supportive when lupus attacks, but I don’t expect them to really understand. I’ve screamed and cried until I could hardly breathe. I totally avoided going outside. I chased down a truckload of Xanax with a couple bottles of wine. I researched all the current criteria for SSI disability and was pissed because I actually qualify. I spent sleepless nights watching inane movies or trying to read a book. I called in sick from work and sat in bed for 13 hours. Every time I looked in the mirror I was disgusted with my entire body. The phone hardly rang, so I was mad about that. And when a few brave souls did call to talk, I spewed self-indulgent diatribes of hopeless bullshit at them. Lately, the glass has not been half full or half empty. I smashed it on the floor into a thousand tiny pieces. Literally. Except it was a plate.
This is what lupus does. It’s ugly and angry and frustrating and sometimes unrelenting. This is the nasty underbelly of this chronic, incurable, insatiable disease. It can attack the brain, the heart, the lungs, the kidneys, the skin, and everything in between and nobody knows why.
How are things now? I’m able to pull my prednisone-bloated body together and go back to work. I can write about how I feel. In the movie A Beautiful Mind , John Nash struggles to ignore the delusional people that haunt him throughout his life. In my recent flare with lupus, I am trying to ignore the voices of despair and anger in my head. To that end, I’ve been able to spend some quality time with a handful of people I trust. With them, I don’t feel so ugly or limited.
I continue to look for sanctuary, or inner peace, or spiritual guidance, or comfort, or whatever you would call it. Maybe there isn’t a word for what I’m seeking when I feel bad. I really don’t know. Somehow, I feel a little better. Just a little. People often describe their life journey as a landscape of hills and valleys on a map. Lupus appears in my mind’s eye as a series of crooked roads going nowhere. Either way, I’ve had enough of the screaming and angst and sleepless nights. I don’t want to look at the map right now; the hills and valleys and roads are just too much to deal with. For now, I want quiet time without tears and heartache.
There’s a song by Indigo Girls that I like a lot. Aptly, it’s entitled Closer To Fine. It speaks to how I currently view the battle between my spirit and my disease.
I’m trying to tell you something about my life
Maybe give me insight between black and white
And the best thing you’ve ever done for me
Is to help me take my life less seriously
It’s only life after all …..
Well darkness has a hunger that’s insatiable
And lightness has a call that’s hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety till I sank it
I’m crawling on your shores …..
I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains
There’s more than one answer to these questions
Pointing me in a crooked line
And the less I seek my source for some definitive
The closer I am to fine …..