From the mouths of babes, even sarcastic ones

I sighed audibly Sunday night at dinner.

My sister asked what was wrong. Nothing, I said, I just had a busy day, thinking mostly of my trike ride.

My nephew chimes in: Yes, every day is busy when you're always sitting down.

I didn't hear him but knew it wasn't good because my sister was laughing  and my nephew was smiling broadly.

I went ahead and ignored the sarcasm and thanked him for understanding because he was right.

It is busy and hard.

Mini-him

As if I needed a reminder that my 11-year-old nephew is his father's son, I was reminded yesterday.

I was in my manual chair because the ball bearings in my power chair had died or disappeared or what ever ball bearings do when they fail, so I called him to help me up the ramp into the house.

Sure, he said, and he came out.

What he mostly did, though, was keep me from rolling backward while shouting encouragement at me to keep pushing myself up the ramp.

It's not a bad thing he is like his dad, who does love and help me but does the same thing when he pushes me up the really steep driveway in my bike.

Things fall apart, but what?

Mom found a big screw on the floor of my bathroom over the weekend.

It doesn't look like it is from my chair.

Mom found it shortly after picking me up off the floor with the lift, and it could be from the lift. But I can't find any screws on the lift.

I thought it might be from a shelf in the bathroom, and it  does look like it's from that, except the shelf isn't missing any screws.

Mom said we'll know what it was from if something falls apart.

Holding on

I have been sleeping poorly.

I fall asleep fine, but then wake within the hour,  my legs jumping, tired but unable to fall back asleep.

Mom blames the shorter, cooler days, and I am sure they play a part. There are other forces at play, too, and the result is I am just surviving.  

inaccessible

When  you feel less than awesome mentally, you see clearly how inaccessible the world is.

The elevator that closes before you can get to it every day becomes a big deal.

The button to open a door that is  hanging on by a screw becomes a significant problem.

I can deal with these on good, even OK, days, but  on days like today, I am reminded how disabled I am.

I can't even sit right

To sit properly in a wheelchair, you need to scoot back into the chair as far as humanly possible.

Then you need to slide back a few more inches.

The seatbelt is actually called the pelvic positioning device, and is supposed to hold you back there if  you can get there.

I rarely sit as I should.

When I was defending where I sit to my physical therapist, I told her I didn't scoot far back because my cushion back there has no padding anymore.

Well how old's the cushion, she asked.

I told her four or five years, like the chair itself, and I swear I can imagine her smacking her forehead and slowly dragging her hand down her face.

Matt, she said instead, you are supposed to replace the cushion ever year. It's covered.

Why has no one ever mentioned that before?

My saviors?

One of my nieces claims to have saved my life. I have no recollection of the heroic move.

But she swears I slipped off a step in a pool (very possible) and she pulled me from beneath the murky depths.

A few issues raise red flags in my mind: First, she was kind of young when we were at the house with the pool in question. Not to say she couldn't have helped me. She's tough. Second, I would never go into a pool without adults around. Third and most importantly, she also talks about "saving" me when  helping me out of my recliner. She forgets to say how she basically dropped me to start with.

I was thinking about this and wondering how her Mini-Me, the13-year-old niece I live with, will recount an episode yesterday.

She has been helping me exercise when she has a moment, and we were finishing up. She also wanted to use the lift, so I said, sure, you can put me from my bed, where I exercise, to the floor.

To get in the lift, I need to be in a seated position, so I was working myself up when she came around behind me. I figured she was going to block me from falling back, so I stopped holding myself up.

Next thing  I knew, I had collapsed backward onto my niece, who was collapsing in hystetherics and blurting out essentially, whoops.

At some point between gales of laughter from us both, we got me sitting, then into the lift.

Laughter is good, especially when not at dinner-table blessings. Note to non-family readers: I laugh at  inappropriate moments involving prayer and the dinner table pretty regularly. It's laugh or cry.

Anyway, laughter is good, so maybe they are saving me.

Bruce Springsteen would love leg loops

I just bought these things called leg loops. They velcro around your thighs and provide you  with a new place to grab. My therapist had mentioned them, and then I noticed at work that I use my pants by grabbing them. The leg lifts will just make it easier.

The only downside is I have rot wear bands on the outside of my pants, but that's OK. It'll be like I have racing series now.

And my title? "I just want something to hold on to," Springsteen sings in  Human Touch: Me, too. And  now I have leg loops.

Excuse?

My goal is to  exercise five times a week for just 20 minutes a day. I'd like to blog every other day.

I rarely accomplish either.

It's not that I am too busy or that it is too hard.

So often, it just seems as though things crop up  to prevent me, and I honestly don't know if they are just excuses.

I never feel wonderful. Why then can I rise past that sometimes and write or exercise? Why sometimes can I not?

I told my physical therapist this week that I have never had basic instruction on wheelchair use -- like how to sit, transfer, etc. Everything I know is what has worked for me marginally well so far, but as I get more disabled, I need better form.

I just need more answers.