Tag Archives: neurofibromatosis

Body, Country, and Betrayal: A Poem

Your body will betray you. Without consent or reason, Without preparation or solution, Without fairness or predictability, Pain and tumors will colonize. Ideologies and histories colonize, too. Suffering will reign in the body. Your body will betray you, Until an expiration date suddenly reveals, “Life is over,” And interrupts all. Your body will betray you,Continue reading “Body, Country, and Betrayal: A Poem”

The best medical professionals view the entire family as their patient.

In 30+ years of life, I have never had more than just a few months without at least one medical appointment. Usually, there seems to be just a few weeks between various appointments. (My case of Neurofibromatosis keeps them in business!) I have also been to countless appointments where I was not the patient.  ThroughoutContinue reading “The best medical professionals view the entire family as their patient.”

“Overcoming Disabilities,” Normativity, and Rhetoric – Hidden Power of Words Series, #28

Earlier today I was writing a letter of recommendation for a student. Through the process of describing their academic abilities and experiences, it finally occurred to me that all-too-often how we talk about academic success–for students with any type of difference–is completely wrong. As professors we often think of how much more impressive our outstandingContinue reading ““Overcoming Disabilities,” Normativity, and Rhetoric – Hidden Power of Words Series, #28″

7 Stages of Having and Recovering from Surgery

Living almost in a state of complete unconscious – basically unaware of surroundings and having a memory of about one second and basically dependent on others for everything Finding everyone and everything irritating and frustrating Being just well enough that the pain really begins Trying to think or remember something and being completely unable Worrying about everything andContinue reading “7 Stages of Having and Recovering from Surgery”

Major Surgeries and “Major” Surgeries

Something that has been on my mind: I have had six surgeries now: Brain surgery in January 1991, heart/lung/chest surgery in August 2000, pelvis surgery in March 2009, first hand surgery in May 2015, second and third hand surgery in May and December 2017. The first three were major surgeries that required several months toContinue reading “Major Surgeries and “Major” Surgeries”

Preparing for Surgery (again) and Toxic Masculinity in the Waiting Room

On Monday, I’ll be having surgery #6 at M.D. Anderson. This is the second surgery this year! Luckily, it’s a small one again–this time to remove two tumors on my left hand. Recovery should be pretty quick, overall, but I’ll be unable to use my left hand for about two months, all-in-all. During the preopContinue reading “Preparing for Surgery (again) and Toxic Masculinity in the Waiting Room”

You are condemned to silence, to suffering, and to death.

Elected politicians who associate themselves with conservatism and the Tea Party/Republican Party continue to show that they are determined to condemn sick people to a life of absolute silence, of cruel suffering, and of swift death. And because they are not speaking out, their followers and voters are also condemning sick people to a life of absolute silence, of cruel suffering, andContinue reading “You are condemned to silence, to suffering, and to death.”