Daily Archives: May 29, 2020

Crazy, crazy world

Tomorrow I shall drive to Dover NH for my second COVID-19 swab. Not because I am symptomatic but rather because I am now scheduled for an endoscopy on Monday and this is a requirement.

The endoscopy is indicated by the fact that my throat/esophagus is yet painful, almost five and 1/2 weeks out from my last infusion. Not the usual course of events. So the plan is to see if something else–perhaps a secondary infection–is responsible for my discomfort.

I am on board because part of being a participant in a phase I clinical trial is parsing out the safety profile/side effects of drug. Although I am the only person to (thus far) report mucositis effects of such sustained extant, it does not mean I am an anomaly. I might simply be the first.

This is the responsibility of being in a clinical trial that is often under appreciated. Phase I is not to test for efficacy but rather for safety. My primary responsibility is to not only take drug, but also to report back side effects.

It is empowering but also can cause one to doubt oneself. In phase I you are often the first (and sometimes only) person to report a particular side effect. However, I take this seriously. Like an astronaut, I am traveling to places uncharted and it is my obligation to note and record what I see and experience.

Duty noted.

Make some noise

When I was in junior high one of my teachers took me out into the hall, grabbed me by the shoulders and slammed me up against a locker. ‘I’m tired of your bitching, Olson.’ This was before the advent of cell phones–he would never get away with that now. As it was, this teacher was later promoted to principal.

I was small, shy and relatively quiet as a child. But I never hesitated to speak up if I felt something was unfair.

Undoubtedly this made life more difficult for me, but I simply could not save myself (or sometimes others) the ensuing trouble.

Being a child, girl, student, employee, tenant, single mother and wife have all made me more cognizant of social injustice. As has the double edged sword of clinical trial participation.

But I have no experience with what it is like to live with a darker complexion.

As a girl/woman, I have always had to be careful about where I went and particularly after dark. But people of color are being killed in broad daylight, by the very organization that is supposed to protect us. According to Wikipedia:

‘The police are a constituted body of persons empowered by a state to enforce the law, to ensure the safety, health and possessions of citizens, and to prevent crime and civil disorder. Their lawful powers include arrest and the legitimized use of force.

Those last five words have been blatantly abused. Driving while black (or walking, running, just being) are not a legitimate lead up to use of force.

I hate what is happening, again and again. I am angry–very, very angry. And imagine if I also had to be afraid? If my skin color made me or my children suspect?

There has to be an outlet for this anger. I would explain to my young children that although positive attention was first choice, negative attention (acting out) was still preferable to those who never said anything at all. This was in reference to classmates who would consistently get in trouble. ‘It is those who go unnoticed that I worry most about’ I would tell them.

We all need agency, and the confidence to stand up for ourselves. Of course, if doing so might get you killed, then that’s another issue.

This has to stop. But in order for that to happen there has to be solidarity. We must all demand that racial profiling end. And that those in power stop abusing it. And if they do, that they are prosecuted to the full extent of the law–the very law they supposedly represent.