“Keep your mouth shut about your health problems Teddy. No one gives a shit.”

My father used to say that to me over and over and OVER again…spoken like someone who knew. Spoken like someone who–once upon a time–used to care and try hard too.

Looking back on it today, I realize now that my father had just gotten to the place years and years ago, that I’m getting to now…

Since we look so healthy, and because medicine isn’t there yet to do much to solve this problem anyway,

we just have to accept our life for what it is and make the best of it.

Wishing for what could be or wishing for what should be is wasting time, kind of like crying over spilled milk. And worse, talking about our health problems alienates us from people who may want to be our friends, because we simply look too healthy and it’s too unbelievable to most people.

Since no one wants to be friends with a coo-coo bird, it’s best to just suck it up and keep quiet. Develop a small network of trusted doctors, but then with the rest of the world,

keep your fucking mouth shut.

No one cares, no one wants to help get the answer, and there probably isn’t an answer that can be found yet anyway. Medicine isn’t there yet.

Make the best of the cards we’ve been dealt, and stop hoping/wishing/praying for a different hand.

It’s probably why some of the best relationships I feel I have right now are with the Knuckleheads–why? I never EVER talk about my health problems with the Knuckleheads (okay…maybe once I did with one guy, but I dropped it pretty quickly). So I exist with them in some kind of normal space in the world, and they like me and most of time I like them too. I make them laugh, they make me laugh and roll my eyes and sometimes cringe miserably, but it’s all within some kind of ‘normal’ space.

And why does that happen? Because to them, I’m just the B Princess, the daughter of the long time King in the small town, and leave it like that…like somehow it was just destiny that I would take over the throne…

I need to let go the rest of my life..my previous dreams I held on to for perhaps too many years, hoping I’d return… I need to let that Tara sail off into the night like a ship I once loved, but now I need to stay where I am on the island…

And I need to be more grateful for the island I have, because many people like me end up drowning in the ocean…I’m actually one of the lucky ones.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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