Skydiving is back on the table

Eight years ago, I decided not to go skydiving: I didn't mind the prospect of dying exactly, but I didn't want to injure myself and become more of a burden.

But then two things happened:

1. George H.W. Bush died, and newspapers ran the photo of him skydiving as he did when he turned 80, 85 and 90. I figured if he could do it, I could. Then last week, 
2. My head-shrinker asked what I had planned for 2019. I got nothing planned. So I blurted out skydiving.  She thought it was a great idea. Her initial response was, oh yeah, where?

I then had to explain my eight-year-old reasoning. She shrugged it off. You could break your leg today, she said. Of course, she's right there.

Then she told me not to engage in "What ifs."

I responded that I love "What ifs." It was always a favorite comic book.

But now I am trying to ignore "What if" and considering skydiving again.

Be careful what you listen to

When my sister was in college, she liked a band called Eddie from Ohio. (Maybe she still does.)

And when my disability became prominent, she used to sing lines from the above at me:

And should your soul grow weary
And the strength leave your bones
Oh my brother
I will carry you home

I wonder if she knew how literally she was being?

Actually, she doesn't do carrying but lots of lifting, picking me up, walking downstairs n the middle of the night ...

But this -- Friedreich's ataxia -- is not her fight, not exactly anyway. She has better things to do with her life than take care of her older brother (even one who is super awesome).

This is, I know, what family does.

But how is it family-like to be a burden? (And I am not considering offing myself. Before I bring up things like this with my head-shrinker, I tell her that, too.)

So I try not to be. But, with my limited abilities there is not much to do.

And, honestly, what are my options if offing myself is out, which it totally is?

• Get cured. But there isn't a cure.
• Win the lottery. I don't play at the moment but recently started looking into it. (You can set it all up online!)
• Become Natalie Portman's arm candy and kept man?

One and three are my choices. I am not telling which is my first pick.

Don't forget your pills

I forgot to take my pills Sunday night. It was bad.

I didn't miss the aspirin or vitamin, but take it from me: Don't miss a dose of antidepressants or one of anticonvulsants (for my restless legs).

The lack of anticonvulsants hit first. My legs surprisingly were calm, but my whole body felt tingly and on edge. An hour after going to bed, I tried to take an Advil to relax, not yet aware I forgot my pills.

Instead, I knocked the water bottle off my table, and I am not cool enough to swallow pills without water. I tried to will myself to sleep. but I wound up calling my sister to retrieve my water. (Fame couldn't, because I didn't know where to direct her to go to get it.)

Then I drifted for the rest of the night before having to call my sister again at 5.

After she left, I realized I needed my pills. It was kind of too late, but I took the antidepressant. Shortly after, the lack of that antidepressant hit.

I wound up just going back to bed and sleeping for four hours. I got up, had a little breakfast, took Fame for a walk, then when to bed for another four hours and just lounged around for a few hours after that.

Ugh.

Old, new, borrowed and blue awesomeness

The first thing you’ll notice about the Nativity is that the Big Three are not in a stable but on the beds of two big rigs (apart from the cool-as-all-get-out Lady Thor statue, but we’ll get there in a moment).

Mom was cleaning out the car drawer, so she brought things over for me to put on eBay. The metal trucks and some of the cars are from the ‘60s. Sadly, they weren’t worth that much, but they grew on me. I decided to just keep them. Also, they’re made by Tootsie Toys, and the name alone makes them worth keeping. Finally, forget the donkey, the family is riding in style to Egypt, Nazareth or wherever the family members want to go. I wish I could have learned to drive in a purple LeMans racer instead of a two-tone Buick Skylark.

The Stormtrooper can run interference as they travel.

Superman will take care of any threats along the way, but honestly he is there as the blue. He is sometimes referred to as The Big Blue Boy Scout.

There is really very little good about the next guy, a Son of the Harpy (as opposed to Stormtroopers). Even by Game of Thrones’ standards, these dudes are evil. This one, though, whose name is Fred, is repentant. He saw the star in the East, left Westros and came to pay respects to the Messiah. He did bring his knife but only because he heard there might be trouble from some joker named Herod.

The little angel band is on hand, but not in the skies as mistakenly reported. It gives the birth a jazzy feel. They are also borrowed. My niece probably has a Deadpool who would fit right in, but she wasn’t home.

Santa is there, too, as always.

Which leaves the peerless Lady Thor, my latest purchase.

Daredevil is my favorite superhero, but I may be in love with Lady This. Not because she is beautiful.

The prophet Isaiah talks about the Suffering Servant. He could be referring to Lady Thor (well, except for the fact that she is unfortunately a comic book character).

Lady Thor’s human alter ego has cancer. When she grasps Mjolnir and becomes Thor, the transformation purges all poisons from her body. Poisons like the radiation treating her cancer. So with each transformation back to her human form, she becomes sicker. But she still transforms because “the world needs a Thor.” She is so cool!

Merry Christmas.

Here are the ones from 2007,  2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016 and 2017. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Disabled, not out of shape

I am certain that the student teacher of my freshman gym class did not mean to hurt me, and I am equally she sure that she would be horrified to learn she plays a role in my nightmares.

But for me, her comment sort of represents high school, a miserable time when even nice people were stymied by how to deal with me and my just-appearing Friedreich's ataxia.

Struggling off the outside track one morning, I was the only one left besides her and the Coach, as my gym teacher was called.

She looked at me, "Out of shape, Coach?" she asked. In my mind, I can still see where she was and what she looked like. He agreed with her and said her job was to get me in shape.

Unsurprisingly, she failed.

I am pretty sure Charles Atlas couldn't have gotten me in better shape because, you know, I was just starting down a road that would leave me in a chair.

Mom regrets not noticing the FA in me and m brother sooner, not that there was anything to do about it.

I guess if we knew I wouldn't have had to put up with stupid comments like that, but it undoubtedly would have opened the door to others.

Cold comfort

A priest Mom was listening to gave a homily on a miracle Gospel and essentially said that everyone would be cured in the end. She told him that one of her sons in a wheelchair finds that "very cold comfort."

I do.

I'll be dead in the end, so it is supposed to make me feel good that once I am dead, I'll be cured?

But I'll still be dead.

So, maybe an archeologist will dig me up in millions of years and exclaim, "My God, this dead body is the healthiest specimen I have ever seen. No disease, conditions or anything. It is astonishing." And then she will excavate me and take me on a worldwide tour labeled as "the Healthy Dead Man." And she'd become rich and happy. I'd be dead.

Who am I kidding? With the way the planet is warming, it won't be around in millions of years, and I'll be cremated.

What to do

Mom and I have been talking about starting to use condom catheters.

On the off-chance, the name is not self-explanatory, let me explain. It works like any condom except it is connected to a bag that collects urine. Also,  unlike a normal condom, the inside is quite sticky.

I tried one years ago and it leaked, so I was not impressed. But Mom has been doing research and thinks it would work.

We even considered who we would hire to perform the shaving -- to allow the condom to stick.

I was warming up to the idea -- and the freedom it would provide -- until it occurred to me that I'd have to abandon getting up and getting dressed myself.

If I did away with saving for retirement, I might be able to afford hiring someone to come in every morning. But I am sure that would be a mistake, the saving part, unless I am certain I'd kick it while I am working.

I am also not sure I am ready to take that step. I don't think I am clinging to shreds of independence. And it  definitely isn't modesty.

I think this is a job for my Head-shrinker.  Not the condom-attaching, the figuring out why it makes me sad.

In defense of wheelchairs

Gram loved my wheelchair. She thought it was freeing and enabling.

For me.

She had no interest in using one herself. She didn't need it. Except she really did.

I thought of this when I saw the photo of Bob Dole being held up so he could stand and salute President Bush's coffin.

Granted, Dole at least used one, but in his mind it is better to be manhandled into a standing position, so he can salute than saluting from a chair.

And it wasn't just him. Emotional, read the headlines, stirring.

I hate my chair. I'd love to discard it but not unless it is unneeded.

It actually was emotional for me. I wanted to cry because someone was all to eager to shed a wheelchair, and this society thought it was stirring.

She gets it

I went to Target today to buy  some Reese's Peanut-Butter Cups for the best little sister in the world.

I went through the garage because I wasn't sure of the weather.

When I returned, I stopped by a friend's office to chat with her, and I mentioned my shopping trip.

She asked how I went because the doors are not friendly.

I told her I can open nonautomatic doors if I have to.

Of course, she said, but just so you know, I am always up for a trip to Target.