Guess my weight? No, really, please

I am not sure anyone not already living it can understand life in a wheelchair. Well, except the readers of this blog.

For instance, the last time I was really weighed was eight or nine years ago at NIH and even that was sketchy.

I was there to see the neurologist for what would be the last time. There's nothing more we can learn from you, the neuro said, so don't call us, we'll call you. I am still waiting for that call.

But before he booted me, I asked him for a scale I could use. He found one with grab bars to pull myself up and then balance. Anyway I did, and I was shocked to find I weighed 135 pounds. I rarely weighed more than 100 when I could use scales.

My primary care doctor was thrilled that I was approaching a normal weight for my height.

Since then, I have tried sitting on a scale with questionable results and just trying not to think about it.

I resolved then to ask my primary care doctor if she had a way to weigh me. Her answer, to put it simply: No.

She said they have bed scales in the hospital but nothing for me. She was sending me to a rehab doctor so she said to ask the rehab doctor.

The rehab doctor had good ideas, I guess, as long as I didn't mind being weighed at a vet or a warehouse.

Who needs to know their weight anyway?

I want another option

While caring for a patient trying to quit smoking, a doctor noticed that the patient's ataxia symptoms and balance improved. Sweet!

I found this out in an email from the Friedreich's Ataxia Research Alliance, which also told me that a study of the smoking-cessation drug -- varenicline -- was looking for participants.

It was a double-blind study, so in the first phase I would not even necessarily get the drug, but I would be assured of getting it during the 2.5-month phase 2. It was in Philadelphia, so it wasn't far and they give you $150 for each of the eight required trips to the clinic. I told Mom about it and said I wanted to do it.

They didn't really list side effects, but I figured it was an FDA-approved drug already; how bad can they be?

Pretty freaking bad, it turns out.

The story offerings that popped up when I clicked on varenicline in my email took me to New Zealand. It seems that the New Zealand government had just added "a new warning on mental health risks" to the drug, known as Champix. Depression and suicidal thoughts were real possibilities, New Zealand decided.

Who cares, I thought; New Zealanders are just not tough like me.

But then I googled Chantix, which is what the drug's brand name is here, it actually got worse.

The drug works by blocking the nicotine receptors in the brain so the nicotine does not give you pleasure. I take anti-depressants, but I think in general it is a bad idea to screw with the brain.

Last year, the FDA said "it appears increasingly likely that there may be an association between Chantix and serious neuropsychiatric symptoms." Later the FAA said pilots and air traffic controllers could not use it. The Wall Street Journal's Health Blog reported a big drop in Chantix prescriptions.

The kicker for me was an article in New York Magazine by a reporter who took the drug. It was good, and had a disappointing look at drug trials. Not surprising, just disappointing. But I did not get to the end of the article; I had to stop when he started talking about the suicides.

I get suicide.

I understand the appeal of wanting pains and sadness and frustrations to end. But when you get further than that, to talk of actually killing yourself, I start to feel really oogy and sick to my stomach.

Needless to say I won't be joining this study. In addition to the psychiatric issues, there also side effects of nausea, diarrhea and constipation, so forget it.

With my luck, this drug will kick Friedreich's ataxia's ass, and I will have to choose whether to be suicidal or wobbly.

Don't go there, but I did

I should not go on to the front porch in my wheelchair, even just for a bit to watch the Memorial Day parade.

I used to be able to go in and out easy enough, and this chair rumbled on out OK, but getting back in was miserable.

The lip of the door hit my footplate so I could not go froward. I had to go up backward, and my chair never gets traction going backward.

Dad wanted to lift the chair up over the lip, but I told him he couldn't because it was too heavy. That was about when everyone started watching. I knew how the guy with the stalled Kena race car felt.

Finally, I said loudly I was going to wait till everyone had left to go in, and I did wait for a little, but I decided it would be a bad idea because I might be stuck out on the porch forever
.
Finally, I tried again and my brother and uncle pulled the chair up the lip.

It's not the help I need, it's the attention from everyone wanting to help.

Rolling Drizzle

Around the time my 4-year-old nephew was born, my sister, his mom, bought two versions of the stuffed animal that became his thing to sleep with, carry around, etc. I guess my sister figured that if one ever got lost, stolen or nastified, she could swap in the duplicate. She probably had the idea because she was never able to find an exact copy of her oldest child's Bear Bear.

But my nephew's Blue has never been lost and has been too nastified that a wash did not fix him.

Blue has never been stolen either, despite my best efforts. I tell my nephew I need Blue for work, or to keep away my bad dreams or whatever. He never gives in ... until today.

He came over with Blue and handed him to me. "You're giving me Blue?" I asked. "It's not Blue; it just looks like him. Mom picked it up. Now we can both have one."

Then he had a granola bar and left.

I felt bad that my sister had actually bought me a stuffed animal -- if people are going to buy me things, I want them to count. But I later learned that he saw Blue 2 as I will call him under my sister's bed, where it has been for years. After getting him out, my nephew told his mom "I better take this over to Uncle Matt."

Now what do I do with Blue 2?

He currently is riding on the back of my chair as you can see. Mom said it would be like the Rolling Thunder guys who have teddy bears on their bikes like this.

I suppose it is although Blue 2 is not as manly as the sarge there and my chair is nowhere near as manly as a motorcycle. They have earth-rumbling roars when they gun their engines. I have a wee little click when I start. The only one who moves when she hears it is Claren because she knows I am likely to run over her because I am a bad driver.

I could leave him in my bed, though my nephew sees my bed all the time and would ask why.

I could put him in my cubicle at work.

Or I could leave him on my chair. It would be a conversation starter, that's for sure, unless people find it weird and off-putting, and stay away from me.

Where should Blue 2 live?

My cursing needs to get its priorities straight

A friend sent me a link to a T-shirt recently, offering it if the blog needs an official shirt. It is a design featuring the ubiquitous wheelchair dude from parking signs only he had fallen out of his chair. He is lying facedown and the shirt just said "Crap!"

I like it, although it occurs to me that I don't curse when I fall -- too focused on how I can get up without calling for help.

This morning, for instance, I fell getting into the shower, and if ever a fall deserved cursing, it was this one.

My foot slipped off the rug and I fell. The problem is I had seen that the rug was out of place on my way into the bathroom, but I did not feel like doing anything about it. It is not something I can fix on my own because if I wheel close enough to pick up the rug, my wheels are on it and I can't move it. And I did not feel like calling for help. So I fell. I got up and showered all without a curse in my mind.

I saved the curses for when my socks and shorts fell on the ground when I grabbed them, the "goddamn bastards."

Meeting Springsteen

My niece turned 6 today. This makes her the perfect age and possibly my best chance to meet Bruce Springsteen.

My other neices are washed up, but at the show Monday Bruce sat down on the stage and pulled up on stage a little girl who had requested the song he was singing. He and she sat there singing "Out in the street." Very cute, very cool.

Bruce also walked around during "Waiting on a sunny day," offering kids a chance to sing.

I figure once we get the new house built, I pay nothing but Springsteen when my niece is there. She is bound to like something. Then I just need to get her to memorize the words, get a seat in the mosh pit (or whatever), take her to a show, get her request picked and voila.

With my luck her favorite song would be "The Angel" or something.

I wanna dance with somebody

I sit fairly still during Springsteen concerts. I clap and try to raise my hands on occasion, but I can't clap in rhythm for more than maybe 20 seconds, and I can't really raise my hands or move with losing control. 

And I don't want to lose control.

I have such little control over so much in my life; I can't willingly shed what little I do have.

This doesn't make me happy. A friend at the same concert posted some photos and explained away their poor quality by pointing out that they were taken "between the clapping, the fist pumping, the hand raising, the chest drumming, the pushing away the drunk, the good neighbor drumming, the pogo-ing, the thigh drumming, and the sometimes unrestrainable need to dance ..." I had no drunks to deal with and am not sure about "good neighbor drumming" but I felt the other stuff. I don't know what I am supposed to do with those urges, though, because pumping my fist is more than likely to upset my balance. The result is then me flopping over the side of my chair like a fish. Sure, I wouldn't fall all the way because of my seatbelt but the flopping itself is no fun, neither to my body nor my mind.

It isn't just Springsteen.

My favorite comic book is a rather melodramatic episode of Moon Knight (sorry Daredevil. Born Again is my favorite story.) In it Moon Knight is hurt rather badly by the Fly, and he has to start using a wheelchair. Bitter at first, he becomes more accepting, and sponsors a ballet. The lead dancer is killed by a deranged mutant while Moon Knight sits in his chair and watches. But the lead dancer does not go quietly, he dances. The bad mutant mocks him and he says if he is to die, it will be as he lived honoring life through dance. His death then provides Moon Knight with the intestinal fortitude to get out of his chair on a rainy night and don the cowl again. Man, I wish that is how it worked and all it took was courage. Still, that book fills me with chills.

I have only really danced once. (Don't tell my sister-in-law that I don't count waving my arms about at her wedding. I also don't count dances I had to do at one of my sister's weddings. I was a groomsman and danced with a bridesmaid and Mom.) No, none of those, but when I was in my second year of college, I went to a dance with a girl and we danced and danced and danced some more. Neither of us wanted to talk to each other, I guess. I don't even remember it well, but looking back it strikes me as so normal.

In Camelot, Arthur tells Guinevere that to escape when they're blue, the simple folk

dance a fiery dance
And whirl 'til they're completely uncontrolled
Soon the mind is blank
And all are in a trance
A vi'lent trance astounding to behold.

Oh God, i want that, but Springsteen must be doing something right because there are enough times where even without dancing my mind is in a trance.

Genghis Matt

A brief Springsteen interlude: One of my doctors proposed a solution to a problem and said if it works, we could get it written up in The Journal of Irreproducible Results, a gag science magazine.

Now how am I supposed to feel? She was serious: Both about the potential solution and publication in the magazine.

I told my doctor I was no longer riding horses because my teacher no longer felt I was safe (I still wish my teacher had asked me but ...). The doctor's idea: a Mongolian saddle, you know the ones you see in museums in exhibits about Genghis Khan. The saddles have real high rears and fronts. My doctor suggested we then wrap rope around it. I couldn't fall out, then. She said a trunk brace was little more than armor, although she was not sure about my theory that knights were just Friedreich's patients.

It was my last appointment with this doctor; she is retiring to go camping and hiking. I am going to miss her and her schemes.

It was still "goddamned good"

As I was rocking out to the glorious strains of Bruce Springsteen in concert, a chorus of blog headlines was running through my mind. Here, then, is the first of several Springsteen posts:

I thought some of the energy from the Boston show was because he was in Boston, but it was a fun show in D.C., too. I just want to be half that energetic when I am 59.

And he played "Blinded by the Light." I couldn't believe he can still get the opening lines out of his mouth so fast: "Madman drummers bummers and Indians in the summer with a teenage diplomat ..."

I had some odd earplugs -- they kind of looked like little rubber plungers or maybe some kind of torture instruments. They also did not work that great -- my ears were ringing last night after the show. But the sound did not overwhelm me, I think the reason was the position of the seats my awesome brother and sister-in-law gave me. The seats were right above the stage so maybe we did not get the full force of the sound.

One of the most amazing things that only made me a tiny bit jealous was watching Nils Lofgren play via a fret cam, a little camera attached to the top of the guitar. His fingers are so fast.

My nephew boldly goes ...

Two things stand out this weekend: Seeing Star Trek and having a pee party with my nephew.

Star Trek was awesome. The actors did a good job of recalling the actors who came before and adding things to the characters. I also liked seeing Admiral Pike and was relieved he just had a regular wheelchair, not the enclosed box like he did in TOS (the original series).

I try not to see movies with too much talking, and Star Trek did not let me down in that regard. Still, I missed a lot of conversations because my hearing is so poor. I wonder what it would be like to see a movie and hear it all the first time.

Hearing also played a role in the pee party.

Dad and I were keeping an eye on my nephew, 3, for a few hours, which means I keep him amused, Dad does anything else.

My nephew and I were going outside but I needed to use the bathroom first. He held the door for me and said something that I assumed was "I'll shut the door behind you."

It wasn't, though. He followed me in and was peering around the bathroom. I told him that he should be excused so he left and I stood up in front of the toilet as I always do -- using my arms and the grab bars to pull me up.

"That's a good way to stand up, Uncle Matt," said a voice at my waist belonging to a nephew who apparently did not leave. Once again I told him to leave, this time because if I started laughing while standing up I might die and would certainly need a shower to clean the pee off.

He seemed to leave yet again but as soon as I stopped he was back, chattering about something. I sat down, and heard the words "my turn," so I tried really hard not to laugh as he pulled his pants down and took care of business. He finished but instead of flushing pulled the toilet seat down and informed me that he had to poop. I told him OK, although I still had to wash my hands and couldn't he have waited?

Apparently not. He told me that "he listens to his body." I left at that. I was doing a poor job of not laughing anyway.

Matty and the Dog

When Prokofiev decides to remake Peter and the Wolf as a killer new story titled Matty and the Dog, I am not certain what instrument will play me.

Today, though, I would need all the instruments in an orchestra to come surging forth at once to create a one-time only (I hope) situation that left pee on the floor of the elevator area on the third floor at work. Dog pee, so everyone can breath a sigh of relief both that I did not pee at work and that I won't be talking my evacuation system. Not much anyway.

A flourishing piano would represent my vet, who put Claren on a course of Temporal P for her itching. It does help, a lot, but it makes Claren drink a ton, which makes her need to pee frequently.

Perhaps, a jolly whistle would start next. A friend who always has a million meetings found some free time to get outside with me and Claren for a walk at lunch. Unfortunately, we left at 11:30, a little earlier than usual for Claren's midday constitutional.

Claren came back from the walk and had two big drinks of water. I would like to say I didn't notice, but clearly I did. Maybe since I am hard of hearing, I just did not hear the swelling music. It would get louder; I did not notice.

Then, a while after lunch would come the rum-tum-tums of my stomach. I have been shuttling back and forth between schedules for a few weeks and I am all right, just not real good in the stomach area. This is probably no different for anyone, but I am willing to bet it is more of a pain for me to get to a bathroom. It also means Claren's full bladder gets jostled around as she walks back and forth from the bathroom.

I am not sure there is an instrument in the orchestra that could be the fire alarm that went off when I was in the bathroom. I was just washing my hands so it wasn't that bad, but since I am in a chair, I can't go out. I just wait in a stairwell, and by the time I got to the stairwell, everyone one had already passed by. And that cost me a chance to send Claren out with one of my friends.

After the drill finally ended, Claren was a mix of plaintive horn with her big eyes pleading with me to go out -- I said "soon" -- and goofy kazoo, running around when we finally left.

But I had to go the bathroom and went, ignoring that Claren stood at the door to the bathroom, not following me to the stall as she always does.

We made it to the elevators, and she just squatted down and peed. She did stop when I said DON'T, but that made things worse. I then had a dog with a half-full bladder and pee on the floor and no one around.

The entire orchestra would be playing a dirge or something now as I hopped on the elevator, got outside as quick as I could and let Claren run alone to the grass. While she was peeing Dad was driving up, so I left Claren with him and went back in. I just told the guard at the front desk who told me they'd clean it up but was so blase about it I am honestly not sure.

I am worried that this blog that is very anti-company is going to report that morale is so bad workers are peeing in the halls.

Matty and the Dog is going to be an interesting piece of music.

Like a poor little bunny

I fell getting off the couch for dinner tonight, and I could just not get back in my chair or on to the couch.

You know those nature shows where a trapped animal just gets more and more flustered and exhausted, and you know that it is doomed, even though if it just relaxed and looked at things clearly, it could easily escape. But no, the eagle swoops in and with its great talons rips the poor bunny who was just stuck in some brush.

It was kind of like that, although relaxing doesn't help me get back in my chair and the talons are the arms of my 72-year-old father who did not admit helping me up hurt him.

Want to go to a Springsteen concert, Natalie Portman?

I do wish Natalie Portman would hurry up and fall for me; I am getting too much practice being an also-ran.

I have written that Claren is good practice for my future life with Ms.Portman because Claren is obviously the star and I am easily overlooked.

This morning at brunch, for instance. All the little kids walking by Claren looked; one even blew her a kiss.

The Claren worship took an unexpected turn when an older lady asked if she was Marley. I am pretty sure she meant Marley, the dog from the movie Marley and Me, not say Jacob Marley from a Christmas Carol or Bob Marley.

My dog is being mistaken for a movie star.

I see this as only another plus when I am pitching woo at Ms. Portman. She won't have to hide from the paparazzi. Claren will have the attention and she will lap it up.

Ms. Portman may have to wear her disguise on our first date: I propose to take her to the Bruce Springsteen concert next week her in DC, and I would leave Claren at home.

I wasn't planning on going -- I went in Boston and I don't know that that concert can be topped. But my wonderful brother and his super-freaking-cool wife gave me their tickets because she can't go. I may have to explain things to the head of disability seating who my brother sweet-talked to get the tickets. That will be Ms. Portman's job.

Just let me marry Michael Chabon and that's all

I read an article this morning about some woman who had written a book called "Bad Mother." Apparently, Ayelet Waldman got that name after admitting in The New York Times that she loved her husband more than her kids.

I was a little wary of her right there until I saw that she was married to Michael Chabon. Truth be told, I think if I were married to Michael Chabon I'd love him more than my kids. Come on, this is Michael Chabon. Kavalier & Klay, Summerland, Escapist comics, not to mention a Simpsons appearance. He is a catch, Ayelet, and I like gals.

Unfortunately, that is not the whole story. A chapter details her decision to have an abortion, "to end his life, she wrote in Salon, after a genetic test revealed a bad problem.

I hate genetics.

Because of genetics, I guess I can prove to people that I am really disabled, that I am not living a huge con game for the perks: parking, service dog, babes (two out of three).

But genetics has not figured out how to cure or even treat me even though Freidriech's ataxia has been the "hot" disease for years now, according to one of my neurologists. Genetics has not cured cancer, either. The cold is still around, too.

Genetics or medical fundraisers say, "We are this close!" or "We have come so far!" Maybe get back to me when you start curing stuff instead of just determining why things happen.

But no. Genetics just discovered a problem with this "baby" (she calls him that), and left her with no good choice, certainly no easy one.

In the story I read, the writer mentions a doctor who had a mentally retarded son and told Waldman that she loves her son "desperately." But the doctor said her son would not be around if the doctor had to do it again.

I cannot begin to comprehend the hardship involved with being severely disabled, mentally or physically. I whine a lot, but I know I am pretty lucky all in all.

But I cannot believe that the retarded son would prefer to not exist. I wouldn't.

I may go to bed dreaming of being married to Michael Chabon, just to avoid thinking about genetic testing, abortion, disability, not existing, etc.

The Lorax would be pissed

I have always liked Dr. Seuss' Lorax. He is not for everyone, I guess, like my kindergarten niece who is scared of him and about a million other things.

It is not that I am real environmentalist. I mean I like trees, but I love development and cities. Pretty hard to use a wheelchair in fields.

It might be because I am not much of a talker; the Lorax is and best of all he talks for those who don't talk themselves. "I am the Lorax, I speak for the trees. I speak for the trees, for the trees have no tongues." How can you not love the guy?

They started development in the field Friday. Not our house, not yet. Why you would start anything on a Friday is beyond me but whatever.

It was no fun to see, but we all knew it was coming. All I really minded was the trees, and they weren't even nice trees. It was just sad to see these things that survived so much torn up by a big old machine.

If I were the developer, I'd watch out for a furry, little, orange man.