I keep looking back for an explaination. I can’t seem to find any one plausable or rational reason why I developed an acute form of Kidney disease most commonly found in boys under the age of 10. For a long time my blood work was abnormal and I felt it. Living hurt. I wished at some points to be dead because it would be better than physically aching every moment I lived on. After all my tests and biopsys and observations my doctors concluded I was benign but rare. It didn’t make any sense until now. Until I read this quote from Noam Chompsky.
“As soon as questions of will or decision or reason or choice of action arise, human science is at a loss.” —Avram Noam Chomsky
Out of 100,000 children born every year only 17 have Minimal Change Disease. It usually will present in boys and rarely in girls. It’s not unheard of, but it’s not common either. I was almost 22 and I woke up one morning to find my body in a state of chaos and unbalanced. The pinnical for me was that although it hurt and it was the scariest thing I’ve ever experienced, I knew I wasn’t going to die. Even when the doctor informed me that without treatment it was fatal, I knew this wasn’t my end. It turned out to be my begining. When I look back now at my life prior, it all seems and feels like a hazy dream.
Adults most commonly are diagnosed with FSGS. Bluntly, that’s kidney failure. Meaning total lose of kidney function and your life revolves around a dialysis machine or you can have a transplant, but that takes about 5 years in most cases. I was really lucky, I got MCD and that goes away. It made me horribly ill, with anemia, cushings, brittel bones, hair loss, waking up at 2 in the morning starving, vertigo, diabetes, shrinking my veins and arteries resulting in a right AKA, thin skin, easily bruising, nearly ruining my digestive system, pulminary edema, peripheral edema, and severe dehydration, I managed to hold onto myself and bring myself back. I did it alone. No one believed it was possible to come back from those diagnosis’, but I did. I don’t know how. I was irritated when they would jokingly ask me what my ‘secret’ was. I just did what my body wanted me to. If I was hungry I ate. If I felt tired or weak I layed down. It hurt to hear my family call me lazy or when I would try to explain what I had learned about my kidney disease or side effects from my various medications, they told me I was crazy and obsessed. They treated me like I had lost my mind. I was crazy because I cared? In my opinion, that’s a backwards way to think.
I had to inturnalize my thoughts and feelings because I knew they would dismiss them as insanity. I wasn’t crazy. I was embracing my biggest fear and I was slowly figuring out how I would defeat it. In my personal opinion, that was the smartest thing I could have done to protect myself. It was obvious no one else was going to step up to the plate and fight with me, so I did it alone. I went alone to the doctors and I lived alone in the hospitals for months and months at a time. I was willing to do anything to have my freedom and carefree lifestyle back. Before I understood edema I tried cutting myself with fabric scissors because I thought it would drain the water from my skin tissues. I was wrong. It doesn’t work that way. I’m a silly girl in that sense, I thought everything was that simple. When I bled it looked orange from being diluted with water.
I have come a long way. I have a better understanding and appreciation for bodies. I love them in a twisted way. I admire how they respond to love and hate. I used to repeat to myself when I was alone during the day ’I love my kidneys’ over and over until I knew I believed it. I like very much how they work. They’re, to me, like squishy machines.
-Jiang Ching from ‘Becoming Madame Mao’ written by Anchee Min.
Arrested after Mao’s death and accused of fomenting the widespread civil unrest that characterized the Cultural Revolution, she refused to confess guilt and received a suspended death sentence that was commuted to life imprisonment. Her death was reported as a suicide.