No chest strap

One of the concessions to my situation that I avoid at all costs is my chest strap.

I know I am supposed to refer to them as solutions, not concessions, but a chest strap is no solution.

At least not a good one.

Sure, it keeps me from planting my face in my food when I cough at dinner.  But it comes at a high cost. It saps the strength that remains in my trunk. I have already traded much of it away for comfort and stability in my wheelchair back, which is shaped like a "U" that I sit in.

No more.

My old chair didn't have the major side pieces I have now. I can hardly use without flopping ever which way.

I saw a photo recently of my horseback-riding days. I wanted to cry at how straight I sat in the saddle and how I could not do it now.

Falling in my food, banging my head, and really, just about anything else is worth it to stave off the say I have no trunk strength.

Tag-teamed

Andre  the Giant explains why he was losing the mano-a-mano fight in The Princess Bride by saying that fighting one person is different from fighting multiple foe, which is what he was used to.

I was thinking of this last week when my little sister and visiting oldest sister lovingly attacked my theology, my bitterness,  my worrying … Basically everything. I’m only used to talking about this with Mom.

The worst part is they made some sense. Some.

On theology, they pushed the idea that God is not responsible for my FA or other bad things. But they then said that nice spring days or friends are gifts of God. I want to know how you get a gig like God's where you aren't responsible for random crap but are thanked for random  good things. In the end, though, I'm just not tired enough of being mad at God.

On bitterness, they termed the concessions I make to FA as solutions. How silly is that? My point is that I make a concession, which makes me one step closer to letting FA master me. They argued that the so-called solutions allow me to be my own master. 

On worrying, they promoted the "don't trouble trouble" theory. But my philosophy comes from The Simpsons: Marge tells Grandpa she's not worried, and he replies, you're not looking hard enough. Yes, I am kidding, but something bad is coming for me. If I don't prepare for it (which is often seen as worrying) then I will be screwed.

All in all, I don't expect many changes after our talk, but it is pretty great to have people who love you enough to attack you.

It isn't me

I went to the restroom today: There were paper towels stuffed into the wheelchair toilet.

I had to call and get someone to unclog it. I have to do that a fair bit. The building manager may wonder what on earth I eat, but it isn't me.

Instead, people use the wheelchair stall, clog up the toilet, and don't call it in because, "Hey, people can just use any one of the six other stalls."

Well, except those of us who need to use the wheelchair stall because we are, I don't know, in freaking wheelchairs.

So what?

For every "The tomb is empty" Easter, there is a "Why have you forsaken me" Good Friday.

For all the adorable children at mass today, there was one who appeared to be receiving chemo.

And for every joyful Alleluia, there is someone with Friedreich's ataxia who God stubbornly refuses to fix.

 I am not forsaken.  I am sure when I meet my maker, God will claim, "I was with you. I sent your mom and dad and whole family. I sent you friends. You were actually very lucky."

Given that I will be dead and likely incorporeal, I won't smack him ... probably.

Saying my family and friends are gifts from God seems to ignore their own kindness and my ability to attract loving people.

And God doesn't appear too busy.  That would be one thing. If God were like Superman thwarting evildoers, I'd be OK with FA. Clearly, he is too busy, I could say. But evil grows bolder by the second, and God doesn't do anything.

I know Jesus triumphed over death. I know I will have eternal life. Right now? That does not seem like much.

I can't win

The other day, I asked my sister to listen to a voicemail. It was from Children's Hospital of Philadelphia, telling me my upcoming appointment there would be covered out-of-network.

Do you have an appointment at Children's Hospital of Philadelphia, she asked. When I told her I did, she said, What the hell?

I told her it was with a well-regarded Friedreich's ataxia expert, and her question became: What the hell took you so long to make the appointment.