Wednesday, April 29, 2015

What to expect

I haven't seen a neurologist, let alone an FA specialist, in years. So  I would like to think that tomorrow's doctor visit would bring me lots of answers. I don't think it will.

I fear that mostly it will remind me why I rarely visit a neurologist: FA is untreatable; FA affects different people differently.

On the plus side, a friend at work said the hospital is awesome.

Saturday, April 25, 2015

Doctor, doctor, give me the news

Mom and I put together a short list of questions for the FA specialist on Thursday. Of course, I won't ask the main questions on my mind. Not the God questions, though I won't ask them either

The future questions are the ones I want to know.

  • How much worse?
  • Will FA keep me from working? When?
  • Will it kill me? How?
  •  What's my life expectancy?
The last one he might be able to answer generally. I am too scared to ask that, though.

I know it is rather pointless to know the future. Not much I'd do different if I were going to die tomorrow. Maybe be nicer to God, buy my niece a life-size TARDIS and my nephew a dancing Groot. Other than that ...

Not that I don't have regrets -- "more than a few" -- but nothing to do about them now but regret them. So I do.

  I guess that means I have lived a pretty good life. Not that I am ready to die.

Thursday, April 23, 2015

What a waste

I did not expect to be typing this on my on laptop, but here I am.

A friend and I were chatting at lunch about our older Macs. He said he ordered s memory upgrade and would let me know how it worked. The next week he said it installed easy and worked well, so I ordered some myself.

It does seem to be working well, but easy installation? Nope.

I asked Mom to help me with it last  night. The first step -- remove battery -- almost stopped us. The pull tab on the battery came off without the battery coming out.

My little sister came out and began helping. We got the battery out, but one of the screws would not come out. After an hour, we gave up.

I was so frustrated -- not that the laptop was out of commission or that the upgrade did not get done -- but because I had wasted an hour of my sister's and Mom's time.

I hate burdening others.

A Geek came by and installed the memory in 15 minutes.

Tuesday, April 21, 2015

I want one

I always approach stories about wheelchair users with my teeth gritted. If they aren't inspirational, they are wheelchair-bound or confined to a wheelchair. I was shocked when I read this story, though, about a child whose wheelchair was stolen. He got another after a woman heard the story and empathized because:

Her firstborn also lives life on two wheels ...

A two-wheeled wheelchair? That is awesome ... well except I'm pretty sure it's impossible.

Friday, April 17, 2015

I'm a poor widow

After the sisterly assault, I joked that my little sister had waited till my oldest sister was here to criticize me so that she'd have backup.

Anyone who knows my little sister will get the joke. She needs absolutely no backup to yell at me.

Case in point: As I went to bed Wednesday after writing about chest straps, she said, good night, and then added that I was no different from her because there are things she can't do now that she used to be able to do.

I think, though, that comparing people who are able-bodied with those who aren't when it comes to losing an ability doesn't work. It's like comparing the charitable giving of a billionaire who gives billions with that of a poor widow who gives $5 she can ill-afford. We know who is cooler.

Wednesday, April 15, 2015

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.

Monday, April 13, 2015


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.

Tuesday, April 7, 2015

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.

Sunday, April 5, 2015

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.

Friday, April 3, 2015

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.

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