I will no longer lie to make you feel comfortable

Living life with a sick parent (in my case, with the other one already deceased) is not something I chose for myself. Obviously, no one would choose that for themselves.. But if I could change it, lord knows I would!

When my sisters and I found out that my dad had ALS - a terminal illness, underfunded and far from curable - we had mixed emotions.

Relief: We finally knew what was wrong! The mysterious problem now had a name.

Defeat: We finally knew without question that we would not be coming out of this with a happy ending.

So, 5 years of illness later (with diagnosis at the almost 4 year mark) when someone asks me how I’m doing, I’ve gotten tired of lying.

I’m tired.

Tired of putting on a so-called brave face.

Tired of pretending everything is ok when it isn’t.

Tired of trying to be “on” all the time.

Please stop saying this to me…

“How are you?? Oh my god I don’t know how I would do it. You’re so brave.”

First off, I’m not brave. I’m a daughter who loves her father. And, to me, that’s what love is.

Second of all, you don’t know how? Be grateful. I hope you NEVER have to figure it out.

I know that all most of you want to hear is that I’m fine. Or managing. Or hanging in there. It makes you uncomfortable to hear me say anything else.

I did that in the beginning. And the longer it went on, the harder it got to pretend.

Now, when someone asks me how I’m doing, I will say this:

I’m up and down. I’m exhausted. Or I’ll be brutally honest and say that today is a bad day. Hell, sometimes I even reserve the right not to answer the question at all.

But, I’ve got it figured out. The trick? THERE IS NO TRICK.

You take it one day at a time. One hour at a time if needed.

Maybe next time, instead of asking me how I am you could tell me something good about your day. You could ask me how my father is doing.

You could offer to do something nice for me.

Or, you could just come to my house, sit on the couch and drink a glass of wine with me while I cry.

Please don’t forget to bring the wine!