Saturday, May 6, 2017

What Do You Do With It?

It was PH day yesterday. And oddly enough I got my call and appointment at the lung center to start more testing and treatments. 

And I was reminded, with the average survival rate listed as three years, how dangerous this is. 

Connecting with other people with PH has helped. Some have the same diagnosis and have been around from anywhere from 7 to 50 years with it. The trouble with a rare disease is that it's rare. There might not be enough data, or certain treatments weren't available at the time, or any number of things lacking that contribute to not being able to tell you what to expect. Right now my paperwork reads as primary. Primary, or Pulmonary arterial hypertension, is a monster I didn't expect. 

Sometimes you continue on each day, each week, and try not to think about it-any of it. 

But, on bad days, all you remember is the three years. You move in slow motion, trying to memorize your child's smile in the morning, or how to feels to hold them while watching television at night. And I think three years is not enough for this. To have climbed out of the dark hell I was born into and finally have the life I always wanted-for just three more years? 

What do people do with terminal diagnosis? People have to face them all the time from any number of things, so what do you do with it? 

Do you take a big vacation? Finish your books? Just spend quiet time with your family? What do you do with that number? 

We're so absorbed as humans that we forget things die, that we die. All the time. We're not special. We're not protected. And we will die. 

I hadn't really dreamed I'd be looking at that this soon. But, then again, maybe I did. I lived the way someone short of time lives. Met my one love before twenty, had my children before thirty, I was running to stay ahead of something. I just didn't know what it was yet. And now I plan my days wondering what happens when I'm gone and can't do these things anymore for the people I love the most. That's what hurts. 

Some days are positive. Some days you agree with Neil deGrasse Tyson's speech on being unafraid of the unknown and getting something worthwhile done while you're still breathing. And some days all you see is that number, your remaining life, and the way it is peeling down too fast to zero. 

I imagine it gets easier. That you get more information or more support and it gets easier. That the reality of it gets more real and less bizarre, and you stop seeing the number anymore. 


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