(I spent about eight or nine hours working to get this 25 second video clip and then put it here. And I have cancer. You have no excuse not to watch it. So there.)

Professionally, I am an advocate. I primarily do special education advocacy, working with families and school districts. I also do a good amount of work with bullying.

I am often baffled as to why parents (and often the student) will not complain to the school, only to me. It is very difficult to get a family to file a state complaint when it is fully justified. I am often asked not to say anything out of fear. I find myself explaining that problems don’t get solved without putting them “on the table.” What is it that people are worried about?

Retaliation. Yes, it is illegal and not tolerated but there is the fear they will “take it out on my child” or my favorite …

I don’t want to be labeled the difficult parent. I don’t want to be that parent.

Why not? If your child is not worth fighting for, what is left? I am a good advocate, I get references from families and from school district administrators, yet my hands are often tied.

Teachers and administrators do not retaliate against students for the vast majority of cases. I personally have never seen it. But people don’t want to “rock the boat or be that parent.”

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I should have advocated for myself, and my health, when the nurse clearly voided any chance of changing my bandage in a sterile manner. I did not.

I should have advocated for myself when my first chemo nurse turned out to be a condescending, self-believed-telepathic, un-empathetic twit. Let me clarify …

I came to my appointment to start the chemotherapy as prepared as I was told to be. I had read all the materials that they offered and had already met with the oncologist. I did not have any questions going in. She started to explain the medication and was talking to me as if I was in middle school. I stopped her and said

You can speak on a different level. I read all the materials, I have three severely disabled kids in their twenties, and a lot of medical experience.

I will explain it all to you just like I do to doctors and will not skip anything.

I want to hear all you have to say, it is the level you are speaking on that I am pointing out, that’s all.

I will not skip anything.

Ok, whatever. She obviously did not hear what I was saying. I often say that to doctors and the conversation goes to a level where I learn a lot more and can engage. But alas, she continued like I was a kid that did not read the materials. It was a joke. She also told me very clearly to go home “today” and take a pill for nausea and take it every morning for the six weeks. This was in direct contradiction to the oncologist and one of my other nurses. (I never took the pills, never needed them.)

Next time I saw her, I said

I have a question about the two nausea pills and their differences.

That’s because you did not read the materials and did not listen last week.

She walked away, came back with a copy of the paperwork I already had, and told me to read it at home. And then she simply repeated what was on the paper. It was nothing like what my question was, which she did not give me a chance to ask. She assumed she that the question concerned when to take each one, when in fact my question was on the pharmacology of the pills. She did not bother to listen; she simply believed she knew what I was going to ask. She was wrong. This was all done quickly and with attitude. I did not interrupt her, no point. When I was done, I walked over to the where the pharmacists hang out with their chemo toys and asked them. They were great, and spoke to me as if I was an adult.

I can go on about Nurse Ratched but you get the idea. Trust me there is more.

I got a new nurse when my wonderful nurse practitioner got wind that I was not happy. So why did I not advocate for myself?

A special education teacher or a principal can’t really retaliate easily nor do they want to. There are many other people around, they know the parent and their (very smart, handsome, and suave tumor-enabled) advocate are watching. I do not feel the same about the hospital.

This hospital has a procedure they go through before they start the chemotherapy coursing through my veins. My chemo nurse replaces my catheter and before turning on the pump calls over another nurse. They go through a routine designed as a double-check of the medication, the pump settings, if I am the right patient, etc. Even the bag o’ poison has two signatures on it to verify two people know what the drug is, the strength, etc.

The way Nurse R. did it, any accidental error would, indeed be caught. But I noticed the first week, that if either nurse wanted to make a mistake (maybe in collusion with my tumor), they easily could and the other nurse would not catch it. There was a loophole in the routine. After my nurse was changed, I noticed a subtle difference in the way the routine was followed by others and it eliminated that loophole.

One thing that stopped me from advocating for myself in any of these situations is simply that in my case intentional retaliation is quite possible and can mean death. Anxiety when working with a patient who has complained or simply not wanting to work with a specific patient can be enough of a distraction for an unintentional error. Getting someone’s friend in trouble is not much better, and I have learned in life, you never know who is sleeping with whom.

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Now that my nuts have stopped hurting, I don’t particularly want to die by a nursing error. But if it has to be death-by-nurse, do I get to choose?