Why I never ask myself “why me” about my disease.

There is a black hole in the middle of our galaxy, probably in the middle of every galaxy.

Our sun which we need to live also kills us.*

Every living thing either depends on the lives of others or has others depend on them.

There is an electromagnetic dawn chorus most of us never hear.

Some cephalapods can control their skin cells, raising the surface to be smooth or mimic rocks or even ruffled sea weeds. Some create light, and can flash on and off.

Viruses are just short strands of RNA or DNA (fancy!) with a protein sheath. But they can take control of organisms from bacteria to humans.


These happen, they are not directed by morality, they happen. There are actions and reactions and we are learning to understand them.


And much as I’d love to be able to camouflage myself like an octopus or flash lights like a cuttlefish, I don’t really want to trade places.


Knowing the odds doesn’t make me think how unfair, or that it will protect me from anything else horrible.

I do consider myself incredibly lucky. Not only did I get to understand my body on a chemical and microbiological level, but also our origins, and the origins of the universe at university. How could I possibly have the ego to think this was a deliberate or uncaring act?

I also consider myself lucky I did also do that intensive two year course in performing. Extreme wake up call on how unfair people are. People judge, people are cruel, or uncaring. People do favour some people over others, and some refuse to see life outside their own experiences.

It really made me more determined to achieve because I knew the universe really wouldn’t notice. But I also knew that there would be people who would get in the way, and I would get in theirs.That’s enough to try and understand on a level of personal responsibility.


We can also be bound by geopolitical boundaries. Access to care is limited to decisions made by people you have never met, by companies who need to make a profit, and by individuals who want to reap what they believe they deserve. The boundary to access my closest hospital is barely two houses and a park away. A park that is uninhabited. That would also have seen me recieve treatments earlier and to have ongoing care. (But that is not to say the care and respect I get is less.)


I do though tend to care about others and tend to adopt language that comforts them. I don’t look at others with a cold eye and think, who cares, I know who cares- we do. It is we who determine fairness and parity in our acts.


*We need Vit D but the sun also destroys DNA- that causes cancer. UV is also used to sterilise. There is a reason it is so effective? SO it’s a balancing act- and I live under the ozone hole. I have traveled. I have felt the difference in UV levels:

In New Zealand, peak UV levels are about 40 percent higher than in similar latitudes in North America

The Earth is closer to the sun in December and January, […] Low air pollution levels lead to higher UV levels […] In summer, ozone-depleted air moves over New Zealand from Antarctica.

I am fully European, first and second generation here, so my biology is not primed for the environment here. But that low pollution, it sure is lovely.

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