Note to self and others:

“Yes, this situation is hard on everyone and can be confusing, but you mustn’t bother with willful ignorance. Your world is different now and not everyone is going to get that.

If there are people in your life who insist upon taking symptoms and side effects of an incurable progressive disease personally, demanding you do things their way...cut em loose.

It sounds harsh, but this scenario can make a brutal situation even worse. In terms of voluntary relationships, like choosing a friend or lover, you do have a choice.

I kept thinking that if I found the right words or tried harder to meet increasing demands, it would heal the situation. The burden of proving that the disease, and not poor attitude, was the problem became exhausting. I was in need of support, but instead resources were depleted even faster as I gave everything to reassure, to help someone else see.

A lesson in futility.

The impossible situations we endure for “love” or “friendship” will force the progression of this disease. Often they aren’t helpful or even healthy. I am here to remind you that you must stop taking superflous hits if you intend to survive.

Our intimates may not have the capacity to understand that life-threatening or life-altering illnesses are not about them. We failed to show up as they expect of relatively normal and healthy people, so they get frustrated and upset with us. Rightly so, but there is a wealth of published medical material to depersonalize and clear this confusion.

Maybe they don’t have access to media or the internet?

Some friends may fill in confusing gaps that they don’t understand with information that does not pertain to you, or your situation. Their fear leaks onto you, and vice versa. When you stop participating in this ridiculous cycle you’ll have more energy for what matters.

This is true in every situation, not just when disease is beating the crap out of a friend or partner. All PwP can do is try to manage symptoms better and continue to communicate clearly.

Unfortunately, we are also forced to suffer random fools who do not even know us tossing opinions like sharp stones into our increasingly difficult fight for survival- one they just do not understand.

These same folks have big ideas about how they would handle your life so much better than you, if they were dx’d with an incurable progressive brain disease. Most people don’t even know they’re looking at a miracle.

I am grateful to be alive and thriving much as possible under challenging circumstances and choose to spend time with people who get this.

My unsolicited advice: 
Stay in the light of love and let go of the rest.”

 

Of note: Thank you to Adyashanti, one of my teachers. His words have  changed the way I respond to life's challenges.