I am not a bad driver

As I was in the kitchen today getting lunch, my niece, enjoying a snow day, passed through on her way to the office.

I wasn't paying attention until my sister yelled, what are you doing?

My niece was bearing down on us in my manual wheelchair and just having fun, I think is how she answered her mother.

She then  started bumping into the cabinets, prompting her mother to ask if she was trying to be like Uncle Matt.

I blame it all on the stupid snow today ... that and my mean sister.

A good one

I slipped the other day as I was getting in my chaise. I was not all the way on the floor, but my face was buried in the chaise and my legs were holding me up but unable to do anything else.

I hollered for some help and Mom, who was over at our house, came to help, so did my 8-year-old nephew He started pushing my head up, and said, "Uncle Matt, I'm helping you." Then my glasses fell off and Mom was able to convince him to just hold them, instead of potentially breaking my neck.

Eventually, I got settled and my nephew gave me my glasses.

This is why I let him play on my phone whenever he asks. This is why I might let him download the Atomic Fart app. Because I love him, and he loves me -- even if he needs to work on his help.

To Claren and Gram

While I have been out gallivanting, I missed recognizing two important dates.

On Thursday, I met three friends for a wonderful dinner. I am not sure what I have done to deserve them. As we left, they asked where my ride was. I told them I had to call for it and it would be 15 minutes and that they could leave.

They refused. How cool. Instead, we browsed a book store till Mom and Dad came.

Thursday was also mine and Claren's ninth anniversary. We graduated February 28, 2004. Yeah, us! We are going to a puppy play tomorrow, which will be her present ... unless she plays herself to death.

Yesterday was Gram's 101st birthday. She isn't here for it, but it is a big day anyway. Without Gram, I sure wouldn't be living in this great house.

Two of the most important women in my life.

Wii all night!

I am putting my niece and nephew to bed tonight -- they're parents and Mom and Dad are going out.

This is a first for me.

I have watched them before and been in the house alone with them although usually I am asleep during afternoon naps  when that happens.

Also, it is never really clear who is baby-sitting who when that happens. Last time, my sister went out, she told her kids  I was in my room. I yelled out, "I am losing my eyes but let me know if you need anything."

My niece, 9 going on 42, hollered back, "OK, you too."

I wish I felt better about it. I am not worried or anything. Claren is just feeling puny because she had some surgery to drain an aural hematoma yesterday, and she makes me feel less than tiptop.

But we're allowed to stay up till 10!

I'm a loser, but it's not my nephew's fault

My nephew was playing a game with his sister when I came in this morning.

I am not sure it was the official rules or something they made up, but each player had five squat, gold figures that they set up near the opposite edges of the table. Then they took turns sliding one of the guys toward the opponent's team, trying to knock someone off the table.

My niece was explaining to my nephew that she was quitting, but that that did not mean she was forfeiting, as he was saying.

I didn't buy her explanation, and felt bad for my nephew, so when he asked me to play I agreed.

He picked the team, and we started setting up our guys. I was having some trouble with that, so he changed the rules.

Just leave them like that, he told me, pointing to the guys I had not stood up yet. He also knocked over his guys, so we'd be even.

He also kept making up rules to keep me from losing.

What made all this cooler than the usual cool is that my nephew often seems to take perverse pleasure in beating me at games on the Wii. A few weeks ago, he loaded a mini golf game, saying, oh, you'll be so bad at this.

I'd miss it if he didn't take advantage of me at Wii, but he made me feel pretty special today ... even if I did still lose.

Bromance forged in the bathroom

My sister and brother-in-law have two kids, so I am almost certain I am not the first naked member of my family he has seen. (I also was not totally naked: I had a shirt on and my pants were on just around my ankles.)

I am also certain that last night was still the most he has seen of me.

Finally, I am equally sure that neither of us were real happy that he had to pick me up off the floor of the bathroom and sit me on the toilet, which incidentally he did easily. He is a PX90-er.

Now I have disquieting thoughts in my head since the idea of my little sister having S-E-X is almost as creepy to me as my parents and S-E-X.

To cure that, I will just mention how amazing I am because I fall a lot but almost never get hurt.

I know I am not unique. My brother with Friedreich's ataxia has told me how good he is at falling.

I also know I am not invincible. My brother has been sporting a bandage on his nose this week since a fall gone wrong.

But still.

Last night, I stood up, lost my footing, fell, knocked into some storage bins, landed on my back on a tiled bathroom floor, and my first response was to laugh.

Because my brother-in-law was there to save me.

Scared of the dark

Today at work I wrote about a woman who hears poorly. She has her co-workers turn her office light off and on when they come in so they don't scare her. I may need to get people to do this in my room at home.

Last night I was sitting at my sink taking my pills when my sister asked if I was OK. Yeah, I was, except she almost gave me a heart attack.

Apparently, I was making more noise than usual so she was just checking on me.

But I totally did not hear her and consequently almost spilled my cinnamon sticks that I eat so I am not taking my pills on an empty stomach.

I could get her to flip the lights, but the sudden dark would probably freak me out, too.

Toxic Avenger or my sister

One night many years ago, when I was still in school, I was at home for a big family gathering. I think it was my grandfather's 100th birthday, which would have been 1993, which sounds right.

I was sleeping on the couch in the living room, or I was supposed to be.

In reality, my allergies were killing me. I could not lie down because I was so stopped up.

Fortunately, the USA Network had a Toxic Avenger marathon and I watched 1, 2 and 3 before finally dozing off about 6:30.

I  was not interested in reliving that experience -- well, except for the Toxie marathon -- so the other night when my nose would not let my lie down, I called my little sister and asked her for some decongestant.

She only had Nyquill, which we both decided would be a bad idea. I might wake up three days later if then.

I called Mom, who had some, and my sister went and got it and brought it back to me.

I took it and played Uno on my iPhone until I fell asleep.

A good egg

My family does remarkably well in anticipating my needs and helping me in my life.

You know who is amazing at it -- my niece who goes to college nearby.

I lived with her family for a summer when she was 2, but mostly I think it is just innate compassion. Sure, she has a mouth that would make a mule-driver blush, but her mother has spent her life in a newsroom.

I can't wait to see what she, and all my nieces and nephews, grow up to be.

It's not my Wii skills my nephew likes

In his own odd little way, my nephew is looking out for me.

Last night, he, his dad and I left a family party at Mom and Dad's early and came home. He and I were playing Wii while my brother-in-law was downstairs in the basement.

I was drinking tea and all of a sudden had to go to the bathroom rather urgently. I made it to the bathroom but just to the bathroom, not the toilet.

With no one in the house but my 7-year-old nephew and brother-in-law, I decided to change my clothes myself. I transferred to my shower chair, got undressed and wheeled to my clothes bins to get some clean clothes.

I am not sure how long he was there, but at that point I heard my nephew from my open doorway if I had taken a shower. I told him no, and he asked, well, why don't you have pants on? I told him I had a little accident and needed to change but was OK.

I then heard him giving my brother-in-law a quick recap and telling him I didn't need help.

At that point my sister came in and helped with the cleanup, so I still didn't do anything on my own.

I want to say my nephew came hunting for me because he needed my Wii skills, but I am the worst Wii player in history. He must like me.

The shit of the real world

I have read testimonials from people who say Bruce Springsteen kept them from killing themselves.

I can't say this has happened to me -- never having been that close to suicide -- but it makes sense.

One of the reasons I like Springsteen so much is that he is steeped in reality. The people in his songs -- with a few signifiant exceptions like Born to Run -- don't talk about escape. They are more about finding a way to survive the hard parts of life so they can live the joyous ones.

There's Night, where after-hours keeps the singer alive. "Hell all day they're busting you up on the outside; But tonight you're gonna break on through to the inside."

Out on the Street is the same theme. Friends and fun make work survivable. "All day you've been working that hard line; now tonight you're gonna have a good time."

In Badlands he sings about "Workin' in the fields till you get your back burned," but then asserts, "We'll keep pushin' till it's understood and these badlands start treating us good."

And you know you're not alone in struggling.

Surviving in the real world is a theme that runs throughout his music, and I love him for it.

All that said, today I wanted nothing more than Tracy Chapman's Fast Car to carry me away from my life.

I fell when I was getting on the toilet. Not badly. I actually didn't touch the ground except my feet, but I missed the toilet.

The problem was I was sitting down hurriedly because I had to go to the bathroom urgently, and when I missed and struggled I did on the floor. And no, it wasn't that kind of urgency. What came out on the floor was the real gross kind. Oh shit! That's right.

I knew I needed help so I shouted for my sister. She came in and immediately called for her husband to help with the lifting. We got me up and she cleaned the floor.

Neither should have to deal with my shit. I can and do, but they should not have to.

I am not sure what else to do.

I don't have a driver's license, let alone a fast car so even though it was really cold and gloomy, I went for a slow ride on my handcycle, trying to figure out how to survive in this real world.

Babysat

Last night my sister and brother-in-law went out for her birthday. This meant that I stayed home with the kids. Not that I was in charge. Another niece, who is a freshman at a nearby college, came over to babysit. I just had to not do anything stupid. Well, it worked for about five minutes.

On the way to Mom and Dad's for dinner, I got stuck in the yard. I ran into some stuff, and my wheels sank. I called my older niece but she couldn't pull it out. she had to go get Dad and my manual chair. I transferred into that and then Dad and my niece wrestled the power chair free.

Being disabled sucks, but ...

Being disabled sucks. No two ways about it. It sucks in the morning when I can't get to the bathroom from my bed in time to empty my bladder, even though my bed is 10 feet from my bathroom. It sucks during the day when a tiny pimple on your back becomes a hellish problem because it is constantly squeezed against an uncomfortable back rest. It sucks at night when I slip getting in and out of my comfy chair. It just sucks, OK?

It does, however, force me to ask people to do things you normally would hesitate to ask your spouse. And it gives people a chance to show me just how great their love is. It never ceases to be awe-inspiring.

My little sister, my new housemate, had two such opportunities and she responded with greatness.

Being disabled sucks, but seeing how much you are loved is pretty amazing.

Saved by a tooth

I suspect it is because I am tired, but the commute home holds innumerable ways to really piss me off.

There are the walkers who use elevators and crowd me in. Granted, one or two could have an invisible disability, but most of them are just lazy jerks.

I missed the train I normally ride, maybe because I left work a little late or maybe because people held up the elevator.

Then I missed the next train. No, I didn't miss it; I couldn't get on. Not because there was no room, but because instead of moving to the center of the car as they are supposed to do, most people congregate round the doors -- you know, the space for wheelchairs.

I honestly don't get this very popular move. It saves maybe 10 seconds. There us more space, for wheelchairs, strollers or people who need it. And needing to stretch out and read your Kindle is not an acceptable need.

I finally got the next train and got out to the parking lot where Mom was waiting. I couldn't get to her, though, because this numb-nuts blocked the ramp with their truck. Then they stopped and stared and pointed at Claren, instead of moving the F--- out of the way.

This pissed-off mood continued until my 8-year-old niece came down out of bed, worried she had cracked her loose tooth. She was reassured and went to bed for 15 seconds before coming back to say she pulled the tooth out. On the way downstairs, though, she lost the tooth.

It all cracked me up.

Why grow up?

Fairly often, I preface a thought with: When I grow up.

For instance yesterday while using the bathroom in Mom and Dad's, I though, "When I grow up, I am going to have a huge bathroom."

I have a better bathroom now in the new house. It is bigger, and will be better once I get used to it and get another grab bar and get the bidet hooked up.

The latter two should happen this week, the former when my stupid body figures things out.

But ... I am 40. I have probably lived half my life, maybe more. I am older than half the people in my office. Why don't I feel grown up at all?

(And it isn't the toys on my bed's headboard. Or the toys in the boxes that haven't come out yet. Those are just symptoms of my feeling like a kid.)

I think it is because lots of people do lots of things for me.

Mom helped me unpack some books and set up the aforementioned toys on the headboard. Dad makes me breakfast and lunch and drives me to work. My little sister lifted all the heavy boxes for me. This morning, she came and got my glasses, which I knocked on to the floor. Heck, my niece and nephew are at my beck and call if I need anything. So is my brother-in-law, though, if I ask for help I have to accept the mocking that comes with it.

All I really need to do in life is take care of Claren and myself. Everything else is taken care of.

Who needs to grow up then?

I really am lucky

My nephew kissed me good night when he left our house the other night. He never kisses me; I have no clue what motivated him.

Wheelchairs -- yea or nay?

I got up at 9:30, ate a new breakfast -- blended hot cereal -- brushed my teeth and went outside to ride my handtrike before Irene struck.

Too late. Drizzle started when I was still in my chair, and as the rain began to fall, the energy seeped out of me. I went back inside, read for a while, then napped till dinnertime mostly. Now, it is early but I feel like going to bed.

At some point, just before my nap started in earnest, my 8-year-old niece disappeared into the other room and came back sitting in and wheeling my manual chair.

She told me she had brought out my other chair, just in case I thought the wheelchair maybe belonged to some random person she saw on the street.

She then said, "I love this thing," as she wrestled to get it up a tricky threshold at Mom and Dad's.

A wheelchair is not so lovable when you are on the third floor of a building during an earthquake. No one quite knew what to do about me, or my officemate who uses sa chair. We finally just rode the elevator down fine.

It's not so cool when it rains either. Before the brunt of Irene, I went out this week to let Claren pee. It was just sort of spitting so I went myself. That soon turned into a downpour. My top was fine, but my thighs were soaked, sitting parallel to the ground as they do.

Fitting under tables -- not so cool either.

Visiting people who aren't in wheelchairs usually requires sacrifices.

Wheelchairs are easy to love unless you are stuck in one.

Powerless

I can't get the image of our dead hawk out of my mind.

I say "our," but it is not like we owned it. The bird, perhaps a red-tailed hawk, just frequented the neighborhood.

I think it got electrocuted by the electric wires.

I couldn't believe how big it was, lying there on the ground right next to a telephone pole on Pine Street. It looked like someone had just tipped over a bird from a taxidermist's shop -- beautiful, powerful, unharmed -- except it was lying on its back in the grass.

What struck me most were its legs. They were so big and strong-looking, and its talons seemed huge. Now, it was just powerless, dead.

I am not dead but know too well the feeling of powerlessness.

I was playing Life with my little niece and nephew, which meant I was sitting on the floor making an effort to play and they were running around yelling. Their parents were out back working on our new house.

I saw my nephew stop running and just stare out the back door. I asked what he was looking at and he just said some guy. I thought it must be someone working on the house, but then I saw shadows moving on the deck outside the door, so I yelled "hello" and "come in." I assumed it was a friend or something. Who else comes to a back door?

My niece came to stand with her brother by now. I shouted "come in" again, but instead he asked the kids where their parents were. My niece said out back and he left. I called my sister and told her someone was headed back there, still assuming it was a friend.

Nope. It was some guy who wanted to pave the driveway. And I sat there on the floor while my little relatives told some random guy that their parents weren't there.

I thought back to my time in North Carolina. I was still walking. Not well, but I was still walking.

A guy knocked at my door one day and asked if he could have a glass of water. It was hot and he said he was waiting for someone. He might have said he just got out of prison -- I lived in a less-than-ideal spot.

I did not want him to see how poorly I walked, figured that would be bad, but I wanted him to have some water. So I invited him and told him to get it himself. He did and then left. No problem.

I'd have been powerless if he did something, but at least I just endangered me. This time my powerlessness threatened part of my family.

You would cry, too, if it happened to you

One of my nieces was telling me how my 6-year-old nephew started sobbing at the end of the movie Beezus and Ramona because he was just so happy. I know how he felt.

Not that I cried at Beezus and Ramona. I haven't seen it.

But last night, after folks had gone home from my party, Mom gave me a little one-arm hug and said, Nice party.

For some reason, I just lost it then. I started crying and it took several deep breaths to keep me from just total breakdown sobbing. Not sure why. Mom just patted my head until I recovered.

I had never had a birthday party with friends. I am sure Robert was at some of my parties growing up, but he was really my brother's friend. I was just their sidekick, a well-loved sidekick, but still.

I knew people liked me and would come, pretty sure anyway. I didn't really think people would say they were coming and then not show up and it would turn into some awful prank like in Carrie. Really. I didn't. At least not from my friends. My little sister and certain in-laws, however ...

It would be more fun if I heard better. I do OK in small conversations. In groups, whether it is friends or family, I often can't make out the words. I hope no one dares to think my silence is because I am unhappy.

I doubt they do because I often laugh. I may not have heard the story just right, but sitting around people who like me gives me more than enough reason.

I thought I could be an island

I have always been a little jealous of the narrator in Simon & Garfunkel's "I am a rock."

I know he is alone, but a lot of us feel that way. Plus, there is the added bonus that "a rock feels no pain; and an island never cries."

I was operating on the "island never cries" theory when I asked my little sister to go home tonight.

As I have been drinking a lot to try to rehydrate, I am peeing more than a lot. For someone with continence issues who can't get to the bathroom fast, heavy drinking (of the water variety) can get ugly fast.

Suffice it to say that it did get ugly tonight, and with Mom and Dad out, I needed my sister's help. She came right over and got everything cleaned up.

I kept apologizing and she kept telling me not to. That finally did it. I started crying, not because I am incontinent or have Freidriech's ataxia, not even because my little sister, who I never got along with growing up, was giving up her evening to help me.

But because she did not mind helping me. And the grace and love was overwhelming.

So I asked her to leave.

If I was alone, I would not cry. I'd suck it up, find a bad movie and watch it.

Instead, she hugged me.

Uhh, what part of "an island never cried" does she not get? And how do I make sure she never does get it?