Sunday, March 30, 2014

Almost Superman

I do not claim to come from the foreign planet of Krypton or to have been immersed in gamma rays -- I guess I am a mutant, though, but not the good kind. There were some super-human efforts last night to avoid waking my sister, however. They failed, and I did have to call her for help, but I was insane last night, insane-ly awesome.

Everyone else went to bed by 10, so when I looked and saw it was 12:30, calling for help was at the bottom of the list. So I tried to be real careful transferring back to my chair from the chaise.

Being careful almost assures troubles, so, of course, I slipped.

I realized, though, I could lie on my back, propel myself into the bathroom to my grab-bars and steer my chair to the bathroom at the same time.

Thus began a 20-30-minute trip to the bathroom. I was coated in sweat when I got there, but was so proud.

But then I was too tired to stand up, and my shoes fell off, so I had to call for help. Dang.

Saturday, March 29, 2014

Bearing the unbearable sorrow

Come May, I will have been in my wheelchair full time for 15 years.

I always imagined that at some point, I'd stop grieving over my situation. After all, I have much in my life -- family, friends, a job, an intellect -- that enable me to rise above Friedreich's ataxia ... or so I thought.

Turns out that not a day goes by that I am not reminded of my body's failings. The reminders are sometimes painful, usually annoying, occasionally funny, but they are never-ending.

This morning, for instance, I sneezed several times in the shower. This required grabbing the bars in my shower tightly, hoping that I wouldn't slip or bang my head into a wall or bar, and keeping my chair from shooting backward when I sneezed. Mission accomplished, but hell, it's exhausting.

These things, even the funny ones, keep the grief alive and make sure that I never forget my disability.

The reminders have been coming hard and fast all week, and they have been augmented by a bunch of crap that has been weighing on me. The result has been I haven't felt good for a while. Little things threaten to tear me apart. I feel like I could sleep all day. I disregard the good things in life.

I am getting better the past few days. I feel as certain as I can that it is grief, though, and while the worst will assuredly pass, I no longer think I will ever not mourn.

Wednesday, March 19, 2014

Really? Bloody Wednesday just sounds silly

Despite the absurdity of the name, that was how the day began.

Actually, my day began hours earlier when my feet were driving me crazy and I had to get up. But that was blood-free.

It wasn't till after my shower that things got bloody.

I kicked my shower chair. I then noticed gobs of dark blood on my floor, but the foot I banged up, while scratched and painful, wasn't bleeding. I'm still not sure why my right foot bled.

I had to call in reinforcements to put a bandaid on my foot. My sister also cleaned up the floor, so Mom didn't freak. Thanks, as usual.

Monday, March 17, 2014

No more snow

Even Claren is tired of the snow.

Well, maybe. Who knows what dogs are thinking? Like, when she deigned to play catch with the puppy, got the ball, took it to where the puppy couldn't go, then lay down and chewed it, was she really being a super-jerk? Or was she just saying, "it's too cold to play"?

Actually, I suspect she was being a jerk, but she was ready to come in whenever I suggested.

I am tired of it, though.

Saturday, March 15, 2014


Technically, I suppose, the Streak is over.

Actually, I guess, technically it is intact, bit the spirit of the Streak is broken.

I am referring to my streak of not calling my sister and getting her out of bed. Here are the particulars; you decide:

I woke up at 6:20 one morning this week and while I was getting up, I dropped my phone. I then lot my balance and fell back on my bed. I was perpendicular to the bed. My butt and legs were of the edge, so I couldn't push myself up.

I lay there for a bit, thinking someone will be up soon as they usually are. But no one came. Finally, I had Claren speak, which she is eager to do when it is breakfast time. My sister then came down and helped me.

You see the technicalities: Claren called for help, not me, and someone is always up then.

I have good reasons for not writing more this week. I was helping a niece three days (what should I charge her for the three naps she cost me?) and one night the power went out.

Fun power-outage fact: It happened at 9:30, I went to bed, listen to music till 9:50, fell asleep, woke up at 2:30 and the lights in my room were on, so I thought the power just came back because no way I'd sleep through so much light coming on. Well, apparently I did. The lights came back at 10:30.

Monday, March 10, 2014


It is with some trepidation that I say this -- not wanting to jinx anything -- but nine months and many changes of pants after my my kidney stone, I seem to be back to my normal.

Today, my urologist's "stone guy" said my kidneys look good. He saw a little spot but wasn't sure it was a stone. He wasn't sure my control seemed back to pre-stone levels. He wondered if I passed another stone that had been causing issues.

His good report actually did not convince me I was back to normal. That happened Friday. I had been feeling more in control for a few weeks, so I was happy, and I sort of had to pee when I went to the bathroom Friday.

In the post-stone world, having to go generally meant I'd be too late, so I had been trying to go ever hour and a half whether I needed it or not.

But Friday I did have to pee, so I transferred to the toilet ... or tried to.

I fell, between the toilet and the stall wall, and yes, that is a really narrow space.

And I held my bladder in check. I held it as I stood once, collapsed, stood again, sat on the toilet, almost fell off again, got properly situated and I could give the bladder a green light.

No runs, no drips, no errors.

Sunday, March 9, 2014

Ready for a nap

It's not that I  have no energy.

I work 40 hours a week. I walk Claren. I keep myself clean and sort of clean-shaven. I write and answer email. I pick myself up after I fall. I go to doctor appointments ...

One would think that eight hours of sleep, combined with a daily hour and a half nap, would be enough  to support me.

Instead, every weekend day I sleep 12 hours a day and take two-hour naps. And I am still sleepy.

Friday, March 7, 2014

Lucky man

I haven't written about any big falls lately, not because I am getting better or anything. I have just been really lucky.

I realized this when I was getting in the shower this morning. I leaned forward to grab a bar, lost my balance and was going to fall badly, but then my hand reached the bar I was grabbing for and held on.

This has been happening a lot lately.

When the luck wears off, I am screwed.

Monday, March 3, 2014

Matt's dead; let's party

Two people I know who've died recently apparently requested no memorial service, and their loved ones went along with it. I don't really understand that. I imagine they did not want to put anyone out. But memorial services aren't for the dead, they're for the living.

Memorial services allow the people left behind to gather and not be alone in their grief. They allow people to share memories and smile through the sadness.

SO ... to ensure there is no misunderstanding, I want a big, effing blowout.

Not an Irish Wake, think fraternity party.

I don't dance, but there better be dancing.

I don't drink, but I want drinking. If someone wants to play beer pong on my coffin, OK.

I don't want sadness when I die, I want laughter.

(And I am not planning on dying soon, just when I do, let's party!)

Sunday, March 2, 2014

I didn't do it on purpose

You know how soldiers used to put sharpened posts in the ground to deter horsemen? Well, my brother-in-law is threatening to put something similar under my sink to keep me from going too far under.

You see, apparently, I broke a pipe under the sink by hitting it with my chair.

I say apparently because I never drive under my sink fast. And, if it happened when I think -- when i heard an odd crack -- I was not going that fast.

My brother-in-law was joking ... I think.

Saturday, March 1, 2014

Where is Spider-Man when you need him?

Last night, we watched The Amazing Spider-Man even though both my brother-in-law and sister think he is a wuss. I loved it, as always.

Spidey's motto is "With great power comes great responsibility," and I am not sure you'll find a superhero who feels such a responsibility to help people. In a recent issue, there was a blizzard in NYC and he was sick, but he still ventured out. He just wanted to check on Aunt May, but first he got an ambulance unstuck, then he plowed a bridge in case it was needed. Then he checked on Aunt May. He cares about his fellow man and woman.

I wish Spider-Man had been  in the subway for my commute home last night.

First, the train was about two inches higher than the platform, so I got stuck getting on. One person moved to help me. One. I don't think the others were callous (I'll get to callous), just oblivious.

I backed up, tried again and got on before the helper reached me, but I nodded to him in thanks.

At my stop, I got off about 15 feet from the elevator. I saw it was already at the platform, so I hauled over to get on.

Seven walking folks had packed themselves in, and only one got off when he saw me. I said I need more room, but no one else got off. They all did a little shuffle to get me more room.

Part of me wishes I had flown in there and run over the jerks, but no, I got on cautiously. The door did not close, so the jerks did another little shuffle and gave me another inch, so I squeezed in.

Spider-Man would have gotten off the elevator.

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