If I could ask one single thing, if I could have one wish out of life, I think it would really be that my story is not a tragic one. That it was not something you heard and go "well, how horribly sad."
It doesn't mean things have to go right all the time.
But, pff, wouldn't that be nice...
But just that it winds up an uplifting story, that would be enough.
A lot of the pulmonary hypertension stories I get to see about women who are my age are literally testimonies of bravery. And in most of them, I see them surrounded by family. They darn well should be, and everyone deserves to be, but particularly in that situation.
I don't have the primary PH form they initially thought, just a lesser crud that should improve with access to a breathing machine overnight, as it has a relationship with sleep apnea. It's not a good thing to have, and I've lost some lung power and gained some crossed heart wires, but all in all, it's a walk in the park, especially in comparison.
I'm grateful for that. Very grateful. That turned a monster who was about to eat my life alive into some kind of poisonous snake I have to just go out of my way not to step on. It's a totally different situation. A far easier one than the people whose stories have inspired me, and the PH community who helped me and answered my questions with a new diagnosis.
And yet, I'm still admittedly kind of jealous of the people whose parents hug them before surgeries.
Of the people who have parents who celebrate their accomplishments.
Of the people who know in their life adventures that a safety net exists.
For those of us who had an addicted parent, an abusive one, a mentally ill one, or the winning combo of all three, it's this weird reminder to be sick and to have all of those people who were supposed to love us just be absent or actively abusive (or absent because their default is actively abusive).
It still hurts. You'll really have a lot of moments of wondering why you weren't good enough.
I won't ever forget the kindness people who weren't obligated by familial ties showed me or my family.
The friend who tried to show up at my house to be with my children before what was supposed to be a 5AM surgery, the one who celebrated with me when the more dangerous diagnosis was officially kicked in the butt.
But it's a not a switch that gets flipped, it's more of a journey, the coming to terms with the loss of something you didn't really have. Being that sick made me really frightened that my husband and children wouldn't have everything they needed when I got worse or passed away because neither he or I grew up in functional homes (which might explain why we were so close in college when we met-there was attraction, shared interests and views, but there was also the fact that both of us were survivors in different ways).
The people who showed up, who loved us by choice, did help that. They may never know how much they helped, even if I told them every day.
But I sometimes have moments where I look back on my family history and think, well, how horribly sad.
But their stories won't change as long as they don't.
Mine, though, is still evolving.
And, hopefully, it will be one that people can hear and think that it's motivating, positive in one way or another. That would be enough.
I've recently tried to reframe the "why did this happen to me" with the "what led me here, and what can I do with that?" Days where your heart feels a little punched in the face, it does help.
Stoicism also helps, and reading daily meditations about that helps to shake off the residual funk. (People get a little put off when you mention Stoicism, but just trust me- it's not the weird, cold, unfeeling thing modern culture kind of painted it as; think of it as a way to deal and handle the bad stuff that happens, not one that will make you impenetrable to it).
There is also a great website here about modern stoicism, and the author of the blog also has a book about just that subject if you feel like this philosophy has anything to offer you.
I have to keep in mind that some days are just going to hurt a little bit and that's fine. I have to keep in mind that I'm trying to be all the things that weren't in my young life to my children. I have to keep in mind that it's possible to keep moving on, and this is not going to be a tragedy.