Lupus?! A wha dat?!

I guess I was overdue for a tough day.

I don’t like to say I’m having a bad day. Complaining feels like a lack of gratitude and life feels more real to me when I cling to hope than wallow in despair. Even in the grips of the worse pain, fatigue or indescribable bad feelings, I smile when I realize that this condition is temporary, will not outlast me nor the promises God has for me. As the great Jimmy Valvano said about cancer, lupus “cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.”

When I was still working full time, my coworkers would often ask me how I was doing today.*

I relished telling them that I was having a good day whenever I felt a glimpse of my “normal” energy and no lingering bad feelings. But on the all too frequent days when I was feeling less than myself, I liked to say that the software is good but the hardware is not cooperating.

When I knew that this illness had gotten to a stage where working full time and studying part time were too much to bear I got very low. I had no desire to quit, no desire to leave these wonderful communities I was a part of and did not want to let anyone down. The pressures of the hardware, its limitations and its brokenness, were making the software unrecognizable. 

I found solace in 2 Corinthians and reading Paul’s description of this treasure in earthen vessels. 

⁷ But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. ⁸ We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; ⁹ persecuted, but not forsaken; struck down, but not destroyed— ¹⁰ always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body. (2 Cor 4:7-10, NKJV)

 

I find myself with energy more often nowadays. I miss my communities terribly but remain encouraged because I know that lupus is merely a condition, it is not my lot in life. People often say, “I have lupus, but lupus does not have me.” My hope is that this, even illness, will find itself at the mercy of the master improviser, exchanging my ashes for his beauty and incorporating my cries for help into his endless rendition of “A Love Supreme.”

*(One of the most humbling aspects of my life now is knowing when people are asking me “How are you?” and knowing that they aren’t just being polite, they really care.)