I’ve written before about having an Invisible yet Dynamic Disability and some of the ramifications of that experience. The struggles of having to communicate the challenges of living with MBC is real and so many don’t get how I can look fine. Only a small handful of people understand how I must prepare for an expenditure of energy and then how I pay for it on the back end.
And yet, typically no strangers walk up to me to ask questions about my illness. I can “pass” for healthy if I want to and are able to. For instance, running to the bathroom with sudden nausea or GI issues just doesn’t scream cancer patient.
Not unless one is also rocking a bald head.
When I contemplate the IV chemotherapy that I’m scheduled to start next week, this is where my mind goes. Yes, I’ll be dealing with internal or invisible side effucks that will likely make some days truly miserable. And yet the one expected side effect that creates anxiety is that I’m likely to lose my hair.
The last time I did chemo, I lost my hair. It was the summer of 2017 and it was so hot that I rarely wore anything on my head. If people stated or acted differently, I simply stared defiantly at them, silently dating them to say something. I’d just come off of 4 years of breastfeeding and pumping in public spaces and having to fight for that right, so I was primed to take care of business. Sadly, that energy that so often characterized my reactions and efforts is sorely lacking these days.
Some of you may remember how I wrote about an administrative reorganization that required blood work not to be administered chairside in the infusion room. Because of the number of times I have to be in that chair, doubling the number of sticks over my truncated lifetime was just untenable. You can read that entry here. One more insult. One more invasion of my body, my person. One more time where my quality of life was impacted for the convenience of others.
Why is it that certain things become that last straw?
I think a few things are at play here …
- CC Despite the fact that a patient is supposed to be able to make decisions about personal medical care, the actual patient experience is that if one does not go along with what a doctor wants or the status quo, there are major and often insurmountable roadblocks. I read an article recently about how patients are over-medicated while in the hospital because the only way our hospital model works is if all the patients remain docile and in bed. Trying to do something different, even if that different thing is actually better, takes an INSANE amount of energy and persistence. Too much.
- All those small annoyances that I used to deal with once a year or so when I was healthy become an often daily occurrence. For example, I handled the few “surprise bills” from the birth of my children just fine but when those same surprises arrive weekly or even more often, any tolerance I once had is just gone. Add to that the amount of times something routine is denied by my insurance company and I have no desire to open any letters that look official or aJust no.
- On any given day, I am fielding phone calls and emails from people who believe they have the right to dictate how I live my life. A simple example that just adds up exponentially are those people who make appointments for me without asking. Any control I once had over my life has been encroached upon again and again.
- Cancer is something that has affected my life but my life is not always about cancer. And yet, that’s pretty much all we talk about, especially in the middle of a progression like I’m experiencing right now. And so that’s all anyone asks me about. At some point, I have no desire to tell anyone anything.
- Sharing information and how I want to share is about my human dignity and it feels as though I have only a precious little dignity left. Thinking about how many people have seen me naked since my diagnosis is just one example. That number makes me nauseous.
And so I am adverse to (and anxious about) losing my hair because that will just be one more thing taken away from me. Another huge chunk of my privacy will become nonexistent. It will be even harder to avoid people invading my personal space.
And, in Florida, wearing anyone on my head will just be HOT.
And so I conclude with the lines of a poem by Anya Silver … “cede back to me my story/only I get to say I’m tragic.”