Tuesday, December 29, 2015

More from 'Daredevil,' the comic this time

In Daredevil: Born Again, our hero more or less loses it ... for a while, and disappears.

His friends, Foggy and Gloriana O'Breen, Matt Murdock's ex, try to help with no success, and Glori says to Foggy: "When a bomb went off back in Ireland it was like this ... waitin ... not knowin."

It is good to know that able-bodied people feel what I feel, but the "waitin," not being able to do anything, is the worst part of being disabled for me.

I can't drive someone somewhere if they need it.

When I was in a car accident in college, Mom came to the hospital to get me. She brought my little sister, mainly for company. I couldn't even do that because I can't sit very long without needing to be excused.

I can't fix everything either, which granted, no one can, but it kills me.

All I can do is be goofy, and that feels pretty inadequate.

Friday, December 25, 2015

Not so courageous

The big story in The Washington Post today was titled "The courage to persevere":
It’s scary out there. Americans worry that the government can’t stop terrorists where we live. Security checkpoints multiply at workplaces, and in theaters and stadiums and other places where we go to relax. Schools close over hoaxes that used to be ignored. Some days, the world seems consumed by conflict.
People in authority say the right response is to carry on, live your life. That takes a certain courage, which can be a tough thing to summon when you’re on edge. But all around us, people show their courage in the quietest of ways.
This Christmas, we profile four people who fell into life’s traps — they were desperate for money, hungry for freedom, smothered by grief, trapped by disease. And then, somehow, they found their strength. They summoned their courage.
At first I thought, I hope they talk to someone in a chair. Then I decided my life is not ruled by courage as much as necessity.

I didn't go to the bathroom at church last night to be brave, but because I had to go. Ditto for why I went in the wheelchair stall, which had no overhead light.

What was my option when I tried to stand up and realized the tile was as slick as any I have encountered? I didn't get to my chair as best as I was able because I was courageous. I got to my chair because otherwise I might still be there. (Well, not really, my nephew was dutifully watching over me from outside the stall.)

How courageous is it to say that I would sell my soul to be whole?

Monday, December 21, 2015

Help times two

I was staring out the window today considering how I felt about sending two co-workers off in search of printer paper.

Actually, I didn't send them. I just asked one to help me add paper to the printer, and when we couldn't find any, the second person joined in.

After my consideration, I decided that I was OK with it and that maybe it was even a little funny.

I found it less funny when I needed help in the bathroom.

It wasn't a bad fall. I just couldn't get up on my own and was really mad.

Turns out I couldn't get up when someone help me either. My foot was trapped under my chair.

Another helper was enlisted, actually one of the printer paper people, and they helped me up.

I love that I work with people who'll help me, but hate I have to ask them to.

Thursday, December 17, 2015

Daredevil hits the nail on the head

It seems from reading a past blog that Daredevil has in the past surprised me with new reasons to like him. Well, he is at it again.

We are cutting the cord these days, so I finally am watching Daredevil on Netflix. Turns out he is the good kind of bitter!

This gal is saying she couldn't imagine being blind, and he says something about how he is supposed to say he doesn't miss it and to value what he has. He then adds "I'd give anything to see the sky one more time."

I talk a lot here about what Friedreich's ataxia and a stupid wheelchair have taken from me: a monstrous lot. But at the same time I don't let it stop me from doing whatever I want to do no matter how hard or uncomfortable it is. And it will be hard and uncomfortable.

Daredevil rocks.

Tuesday, December 15, 2015

Oh, I'm aware

I got an email today on workplace safety during the holidays. Most were kind of common sense things, but they encourage everyone to be aware.

As if they need to tell me that in these days of mass shootings.

All I could think of was Tina Fey's line after 9/11: "Bitch, I can’t be any more alert than I already am!"

Sunday, December 13, 2015

It's beginning to look a lot like Christmas


It’s no sin that Buffy makes multiple appearances in my Christmas nativity. After all, “She alone will stand against the vampires the demons and the forces of darkness.” Who better to stand any the Savior’s side?

But this year, I will bring in a bunch of rookies. They won’t let me down.

For starters, of course, Jesus, Mary and Joseph, and Santa.

In honor of the new Star Wars, I have two offerings. The Bantha has two roles. He will stand in for the various manger animals. Also, being a native of sandy Tatooine, he will be the perfect pack animal for the flight into Egypt. Darth Vader (M&M style) will serve as an example to Jesus. Another native of a desert, Darth was also a potential “Chosen One.” But he gave into the Sith and the Dark Side. I like to think the hard lesson of Darth Vader helped Jesus withstand the Temptation in the Desert.

Rocket Raccoon is one of two action figures I got this year. At first glance, you have to ask what on earth would connect a raccoon-looking thing with a big gun and Christmas? You’d be right, of course. But I suggest that his friendship with Groot and the other Guardians of the Galaxy is what inspired Jesus years later when he was fighting doubts at Gethsemane. If Rocket was willing to die for his friends, could Jesus do less?

Wonder Woman was the other new figure I got. She and Jesus could bond over having a god for a father. At least post-retcon, she can.

We also have Stretch Dude and Clobber Girl in honor of Simpsons Thursday. Also, when Jesus grows up, he says, “Suffer the little children, and forbid them not, to come unto me: for to such belongeth the kingdom of heaven.” I have no doubt that was inspired by Stretch Dude and Clobber Girl.

Also, the past four folks would dish out the hurt if Herod attacked.

As the kings, we have Max from Where the Wild Things Are, mostly because he has a crown, although the whole idea of Max and the Wild Things becoming fast friends is a strong example of tolerance.

The Brood Queen is less tolerant. She wants to infect everyone with the Brood virus that would make them Brood. Like Vader, she is an example of what not to do.

Snoopy is the last king. Granted a skateboard is not the best mode of transportation without pavement, but we all know “it’s good to be king.” He could just demand his servants make skateable paths.

Felix the Cat atop a rock-climbing wall can play the angel. Any trouble,he’ll just reach inside his bag of tricks.

Finally, in the back is a Cadillac convertible that his co-workers gave Dad when he retired. It is a 1959, the year he started at the Department of Commerce.

And overlooking everything is Claren and her pal, Sajen.

Here are the ones from 2007,  200820092010201120122013 and 2014. These posts also have some background. And God must be amused by this because I have not been struck down yet.





Friday, December 11, 2015

Unstapled

I got the staples out of my head this morning, no fuss, no muss.

My hair is getting a bit long, but I have a big, lumpy scab on my scalp, and it probably would not be good to drag a razor over it.

And even though it does prove I am a bad man, that is not why I left the post with my bloody head at the top of the blog. I have good reasons, sort of:

  • Friday after the incident, no energy.
  • Ditto Saturday.
  • My computer died on Sunday.
  • The next day, I was unable to nap because I was out getting a new computer battery, so I am impressed I didn't fall asleep in my dinner (but it was Taco Monday; who would fall asleep for that?).
  • Tuesday I did just slack off.
  • Wednesday I went out.
  • Thursday is The Simpsons night.
See totally not being lame.

Thursday, December 3, 2015

Happy birthday, little sister, or as bad as I wanna be

As i was transferring from my shower chair to my wheelchair this morning, I had a revelation. I had dropped my glasses behind my shower chair, and my plan was to ask whoever came down first to just grab them for me.

It was then that I realized I am going to heaven no matter what I do because offer everybody amazing opportunities to shine by helping me.

With this idea in mind, I headed over to get some clothes -- pretty proud of my mind for coming up with this "Get out of hell free" card.

I also wanted my Uggs, which were on the floor in front of me. I do not normally turn off my chair before bending over. This is stupid, I know, but so far I'd been OK. Plus, it was my sister's birthday today, so if I fell, I'd just be offering her an opportunity to work of the many, many years she has earned in purgatory. And I had my seatbelt on, so I wouldn't fall.

And I didn't.

I did, however, slip while grabbing my Uggs, and my arm hit the chair joystick, ramming my head into some trim on my wall. This happened at least twice because I recovered and got away from the wall only to hit the joystick again before I could turn it off.

I finally got away from the wall and turned off the chair. That is when I saw the blood all over my hand.

Not sure where I was bleeding, I figured I better call my sister. Normally, she answers with an "I'll be right there," and she is.

This time she said something else and that she'd be there in a second. At that point, I felt something run into my eye and I realized where I was cut. I replied with a wimpy-sounding "help." She did, followed closely by my brother-in-law.

Here is what they saw:


Not to mention bloody me.

My sister leapt into action -- cleaning me up and stopping the blood. She and my brother-in-law decided I needed to go to the ER,  so after a call to Dad and Mom brought them up, we were off.

We were the first ER patients it appeared, so we got in quick. It was all pretty normal, except someone asked if we were married. Not sure what that was about,. We look so alike one of my friends in college saw her photo and referred to her as "Matt with [breasts]."

They also put in staples, which was fine, but if I were a medical device maker, I would make the staple gun sound nothing like the stapler one uses in the office.

Then we left, noticing the ER was almost half full.

Maybe I will start turning off my chair before bending over.

PS: My sister is definitely going to heaven.

Tuesday, December 1, 2015

I'm getting a dog

I have been thinking that my recent posts have been a little depressing and not full of  the pratfalls and zaniness that make a disability something everyone wants.

Then today happened.

First, I got a voicemail that I couldn't really understand, but I thought I heard "dog" and "February."

I checked my email, and sure enough I got invited to get a successor service dog in February. YAY!

Drunk on that news, I went to the bathroom and fell getting back in my chair. I called for help and a couple of guys helped me back in my chair but not before I got a huge scrape on my inner thigh.

I returned to my desk where my chair just stopped working. Dead, for no reason. Just jiggling wire brought it back to life. Wonderful.

But I'm getting a dog!

Sunday, November 29, 2015

Mostly thankful

Why, I have asked myself this week, is Thanksgiving so hard?

I have much to be thankful for: family, friends, co-workers, a good job, good health if you can ignore Friedreich's ataxia (part of the issue might be I can't), a home, a spot on the list to get another service dog, watching The Simpsons with special guests, amusing dinner-table conversations and much more.

The trouble is that there are many  things for which  I am decidedly ungrateful. Actually, it goes beyond just feeling ungrateful. These things make me question God. Not God's existence. I am sure of that. I am much less certain God cares.

If I were going to create a world where people would eventually evolve, I would peek in every now and then to make sure nothing awful was developing -- like say generic building blocks that cause people to  get terrible diseases.

But it is more than that old saw. There just seems to be so much meanness in this world. People take advantage of others and prey on fear. The newspaper has become a hard read. And God does not get involved.

I realize there have been bad people before so maybe it mostly is the old saw.

Wednesday, November 25, 2015

Struggle

As I sat in the shower this morning, I was overcome with a desire to just give up.

I didn't have a plan for what giving up meant other than crawling back to bed for many, many hours. That is, I guess, one of the benefits of giving up: no developing a long-term strategy.

But I suspected I could make it through today -- and given that I am writing this at 9 p.m., I apparently was correct.

Life gets no easier, though. Ought it to be this hard?

Plus, it's not like I could easily get back to bed. I'd have to transfer to my wheelchair, drive off, clothe myself (even in defeat, I wouldn't sleep al fresco), then transfer back to bed.

Monday, November 23, 2015

What to do

I blame the world. I want to do nothing except watch TV (fictional shows, not news) or sleep.

I miss my dog. It is getting cold and dark. But Supergirl is coming on.

Wednesday, November 18, 2015

Perhaps I need some cheerier music


For weeks, the first thought that pops into my head each morning is a line from Springsteen's Point Blank: "You wake up and you're dying/you don't even know what from."

I'd venture a guess what I am dying from. Today, it was the wheelchair stall at work. 

It is too narrow; they are working on improving it. But I won't be holding my breath till it is wider. There are a zillion steps before things can be fixed.

Making things worse, others continue to use the wheelchair stall, though they aren't in wheelchairs. This makes me sad. People who know a colleague uses a chair don't worry about using the stall. Once it is widened, the problem will only get worse, I am sure.

But my sadness is not the only issue. Twice today, I went in and found the seat raised. I appreciate that they raised the seat to pee, but by not putting it down, they are forcing me to venture farther into the too-narrow stall. I spent close to 10 minutes this afternoon just going back and forth to get in a position that was fairly safe to transfer from.

I am not sure there's a tune for me.



Monday, November 16, 2015

Pants-less 'go tit'

I'd like to blame this on the horribly invasive procedure I just endured. (And before anyone complains about my description, what is more invasive than a scope down the throat and up the wazoo?)

But that's not why I spent most of the day wheeling around the office with my pants unbuttoned and fly open.

I blame my stupid, clumsy fingers. I couldn't do the button, and the zipper was irksome.

Granted, I showed nothing because of my long shirt and seat belt, but still.

The fingers are also why I emailed a colleague and perfect stranger: "go tit, thanks." Obviously, I meant "got it."

I am steeling myself for the sexual harassment class. And they'll probably bring up the pants thing.

Thursday, November 12, 2015

I survived

Not to brag, but I may have the cutest esophagus, duodenum, stomach and colon the world has ever seen.  that's my takeaway from the long-awaited colonoscopy/endoscopy yesterday.

Granted, the doctor didn't come right out and say it, but she can't be seen having such a bias. You have to read between the lines of the report and then it becomes painfully obvious that my inner organs are just smoking.

Here are a few other tidbits from the test and its hideous prep:

  • Mom is awesome for pouring me glass after glass of the prep juice, but she is not about manipulating me. I said I couldn't drink anymore, and twice she said, OK, this will be the last one.
  • I am glad my little sister came with Mom and me, but if I didn't know she looks and sounds like Mom, I'd swear she was adopted. She is so something. Pushy doesn't seem right. But something. We were waiting for the doctor to come chat so we could go and she was taking a while. My sister asked the nurse about the doctor twice. The doctor finally called up from another procedure. I am so lucky my sister is on my side.
  • In addition to the normal checkin bracelet, I got an awesome one in neon yellow that said FALL RISK. I debated just keeping it on forever.
  • The FALL RISK bracelet meant I had to do nothing myself, which is good because I couldn't have. When they were preparing me, they positioned me as they wanted. I just had to lie there. (My sister told them they'd have to do this.)
  • Everyone was so nice. I highly recommend Georgetown Hospital for all your medical needs.
  • I have no tolerance for anesthesia. It came via IV, and they said beforehand "you might fell a stinging sensation when the anesthesia enters the IV. OK, here it comes, in 3-2 ..." I might have heard 1. Next thing I knew I was waking up in recovery.
  • For an endoscopy, they put a little thing in your mouth to keep you from biting the scope. IT is bright green. I must have looked so funny.
That's enough.

Monday, November 9, 2015

Paying attention isn't enough

When I was little, I loved funeral homes.

I went, it seems, to an inordinate number of funerals when little, but the deceased were old. And I don't mean old for a little kid but old for their time.

Funeral homes were a chance to hang out with my cousins when adults were preoccupied, play discreet games and explore uncharted lands.

I still have what I am sure is an apocryphal memory of stumbling down some stairs and into the embalming lab and seeing sets of eyeballs on a rotating shelf.

I was reminded of that memory yesterday when I saw the stairs in question. Unfortunately, there were no games last night. When I spied the stairs, I was in a receiving line for a USA TODAY editor who died of cancer.

First off, not a fan of receiving lines. What can you say to a woman who has lost her husband or a Mom and Dad who have lost their son?

"I'm sorry" hardly seems to cut it. It is never easy for me to go places -- I think that is apparent -- so perhaps people see me and it means a lot to them that I went. But that is just not enough.

"Attention must be paid," and I do, but I need to do more.

I should be able to fix things, but I can't. I can't help the wife, the parents, my teary friend.

I no longer care for funeral homes.

Wednesday, November 4, 2015

The unhated

I may have told Mom that I hate people. Recognizing that my hatred is limited to jerks, I will now mention a few people I don't hate:


  • The friends I had dinner with Monday. One cut my entree up; one poured my water glass into my sippy cup, and one have me limited edition white fudge Oreo cookies.
  • The woman at work who filled out my form for a flu shot, then led me to the front of the line. At least I didn't get booed this time.
  • A friend I complained to today.
  • My sister and her family for an amusing dinner-table conversation.
There are probably others, but let's not get carried away.

Sunday, November 1, 2015

How long?

Probably it is the fault of the time change, but I am grieving.

I woke up early, thought of my so-called life (not the TV show, though Claire Danes is awesome) and started crying for my life that never was.

I have had the genetic failure of Friedreich's ataxia all my life. I have known consciously that there was something wrong with me for 25 years and probably longer subconsciously.

When a high-school senior is asked if he is disabled by an interviewer for Duke University simply because the senior does not play sports, even a self-confident senior might be shaken. If that senior is me, lord knows what damage it inflicted. Man, if that was now, what a lawsuit we'd have.

Anyway, this is not new.

Wouldn't I be better off accepting things and not mourning?

I need a dog.

Saturday, October 31, 2015

A real horror

I wish I liked Halloween more.

I haven't been in a costume since seventh grade, I wore a swashbuckler outfit -- a blue shirt Mom got from a friend in Greece, a gold belt  and a machete with a carved handle. And I went alone, with Mom.

In retrospect, it was pretty horrifying. Everything. going alone, the costume, everything except the machete. That was awesome, but Gram gave it to one of my cousins.

Halloween is a chance to be someone you aren't, to hide your true self. But even if I buy an authentic Spider-Man costume, I'm still going to be the Spider-Man in a wheelchair. I can't hide that.

My ultimate Halloween costume would be someone, anyone who can walk. But, you know, I can't walk.

Friday, October 30, 2015

Am I a jinx?

My first physical therapy student was pretty good at first. He was from the area, so he rooted for the same hapless teams. He did the PT that was written down, adding one exercise he thought would be good.

But he became less reliable as time went on. He had very good reasons for canceling our sessions -- his mother getting fired, for instance -- but I saw him less and less.

One Wednesday, he canceled, saying he had to go to traffic court. And I never heard from him again. I don't know if he died, got tossed in the pokey, lost his license or just didn't want to come. He just stopped answering emails.

I traded up, though, with the next one. I liked her and she said she really liked working with me. But she quit earlier this week -- her dad has been in intensive care and she needs to be with him.

I am disappointed but totally understand. It is just I am a little worried I am like the guy in the Johnny Cash song Thirteen, who sings, "The list of lives I've broken reach from here to hell."

Monday, October 26, 2015

Very safe

My sister hit me last night. It was totally uncalled for.

I was taking off a sweatshirt before getting into bed, and she chastised me for doing it without my seatbelt on.

This completely ignores the fact that I couldn't take my sweatshirt off if I was buckled in. And I was holding onto the superpole to get it off.

I am usually not too dumb.

Thursday, October 22, 2015

Love my co-workers

I am slightly annoyed with work these days. Nothing major at all. I am not unhappy, I like my agency, the people and my work, and I believe in the mission. Unless I am offered a high-paying job as a test dummy for a masseuse, I am not going anywhere.

It's possible that some co-workers heard that in my voice yesterday at a staff meeting but thought it was fear.

In their defense, I never talk during staff meetings, and my question/comment about what I'd do in an active shooter situation may have been more words strung together than some have ever heard out of me.

Basically, I was bemoaning the lack of a strategy for me if the unthinkable happened.

I came in today, and I got a strategy. I  was told where to go, and several people said they'd look out for me or that they had to protect me. Not hearing well, I couldn't tell if any of those promises contained sarcasm, like if my sister were making the statement. "Of course, we have to protect Matt."

I even was told "don't fret."

I was much less annoyed at work.

Tuesday, October 20, 2015

Just give me one

God-fucking-dammit, I thought as I was falling out of my shower chair.

I added the eff-ing because it was so eff-ing annoying.

I had slipped getting out of bed but somehow kept my footing and managed a dainty pirouette with my Superpole. The only problem was I wound up on the wrong side of the pole, so it went me, pole, wheelchair.

I considered just dropping and calling for help, but I didn't. Again, somehow I managed to keep my footing and get my legs moving where I wanted them to. Shocking, I know.

I fell into my chair, gathered myself together, went to the bathroom, transferred to my shower chair easily, turned on the shower, then bent over to get my boxers off my feet.

Experienced readers will notice I left something important out of that sequence, something like doing my seatbelt.

It is so damn annoying that forgetting one step screws you.

Anyway I fell. I scraped my back up getting to my phone. Then I called my sister who helped me up.

I say again, God-fucking-dammit.

Monday, October 19, 2015

Don't shoot

Our office went on an active shooter alert last week.

Someone in a building at the end of the office park got an email about an active shooter drill in November. Instead of reading the words "drill in November," he called 911 and reported a shooter.

I was teleworking, but apparently 30 police cars and a helicopter deployed, local schools locked down, and in our building people were alerted by announcement to lock the doors to their offices.

But, I don't have an office, just a cube. I'm not very fast or much of a hider, and the nearest office I could scurry into is not right next store.

It seems like a strategy that figures a) it'll never happen and b) even if it does, a shooter will have better targets is not a good strategy. But that is mine.

Sunday, October 18, 2015

Damn elves!

I have been reading The Shepherd's Crown, Terry Prachett's last novel. It was great, as usual, though there were a lot of unanswered questions. I guess death will do that.

But I'd like to know about the future of the Wee Free Men and why You is so non-catlike.

Mostly, though, I'd like to know what's up with Mrs. Earwig and how she fends off the glamour. Glamour is the magic of the elves, and from what I've read, it leads you to believe all your darkest fears are true.

I am pretty sure I am beset by elves these days -- no other way to explain how I'm feeling.

I feel friendless. I know this isn't true.

I feel that even if people do like me, I am rarely asked to do anything with them. Again, this isn't true.

I guess I just feel sad.

Wednesday, October 14, 2015

We don't need no three rolls of TP

In my last job, it was all about the newspapers. They were always hanging on the grab-bars in the wheelchair stall. But I was working for a newspaper -- it sort of made sense.

Judging by what's left on the grab-bars in my current job, I apparently work for a toilet-paper conglomerate.

It's great, I guess, that the maintenance man likes to leave extra rolls of toilet paper in the stalls, although it's a third roll and if anyone needs three rolls, yuck. And the maintenance man is awesome.

But I cannot tell you how many rolls I have knocked onto the ground grabbing a bar. I am just waiting for the day I knock a roll into the toilet.

Maybe when he has to clean that up, he'll get the idea.

Monday, October 12, 2015

In this scenario, I am like Otto the bus driver

As I have said my niece and nephew have discovered The Simpsons. This is all kinds of awesome. They come into my room, turn on The Simpsons, and we just laugh and laugh. Recently, we watched Lemon of Troy followed by Bart on the Road, two favorites.

Also, as I haven't said but is pretty obvious, I have the emotional maturity of a fifth-grade boy.

And therein lies the problem.

The Simpsons occasionally have an entendre or an adult-ish joke. I don't know whether my niece and nephew get these jokes or just get that the jokes are jokes they don't get. But they look at me. And of course, I am cracking up.

For instance, a recent episode saw the Simpsons in Washington DC. Marge is looking at the Washington Monument, starts giggling, whispers something to Homer, who replies, Grow  up, Marge.

I don't know if my niece understood why Marge was laughing. But she turns to me and says, Oh grow up, Marge. I laughed.

I suspect I am a bad influence.


Saturday, October 10, 2015

My sister is so smart

This morning I coughed a bit during my morning Metamucil drink. This actually is a bit of a surprise.

The day after the towel day debacle, my sister asked me if a straw would help me drink the Metamucil. I said it would because I could keep my head bowed when drinking, which minimizes the chance of liquid going down the air pipe.

I started using a straw and viola! No coughing (To explain today, I was trying to read).

This wonderful solution has one takeaway: When it is brought up that I am not coughing, my sister goes into her touchdown dance and a little song that depending on whether her children are present goes "Ooo, ooo, I'm/Mommy's so smart. Ooo, ooo ..."

Probably, this is the wrong time to mock my sister. Just yesterday I was showering and lost my balance and fell over in my shower chair at the waist. I was using both hands to keep the chair from tipping over, so I wasn't sure how I'd get up. But then she was there to help me recover. Of course, she also called me a pain in the ass for picking up my washcloth and not letting her get it.

Tuesday, October 6, 2015

Put off

Unbidden, an idea burrowed its way into my head the other day: What if my doctor cancels my colonoscopy-endoscopy scheduled for Wednesday?

My oldest sister already had her plane ticket to come down and help me. That would be wasted.  Not to mention the major amount of thinking/worrying I'd been doing, mainly along the lines of: How the hell will I survive this?

My little sister, in a comment that perhaps indicates the seriousness of the situation, acknowledged that  I am "pretty tough" and said we can survive anything for  day.

She's right, but just surviving is no fun, says the guy who just survives too much.

Plus, it took forever to find this doctor, then get an appointment, then schedule the tests. Another delay would be failure.

So I banished the thought to the backwoods of my brain.

Until Mom called me at work yesterday.

Mom never calls, so I knew it would be bad news.

My doctor had been called away on a family emergency.

I asked her to call back and see it there were any options -- another doctor perhaps? That would be less than perfect as I had chosen my doctor for a reason. But anything would be better than waiting.

Yes! Another doctor would do the tests, the office said. We all breathed a sigh of relief.

Until the office called this morning. The other doctor was not comfortable doing the tests. We have to wait for my doctor. What is in my file that scared off the backup doctor?

My doctor is no FA expert. We met once for maybe 20 minutes. My colon and throat aren't really FA-touched.

I guess I'll wait till November to find out.

Friday, October 2, 2015

Isn't it all about me?

The first time my new physical therapist came over, my sister overheard the end of the session and decided the therapist and I were well-matched.

I was telling the PT that I didn't need my feet back on my chair because I was just going to take a nap. She replied that she was going to go home and take a nap.

She is quite good. I have a set of exercises, but she prefers to develop new exercises to do. It reminds me of the last time I went to my favorite PT for help. She always had me doing new things that worked the same muscles.

And she doesn't make fun of all my toys ... although she did tell me when I was doing an exercise that involved me kicking at her: Kick me like I stole one of your action figures.

But she may have unknowingly crossed a line yesterday.

I was doing this exercise, and I took a break with a heavy sigh because it was a hard exercise. She responded: Why don't you give me three more because it is all about me and what I want?

I could have sworn it was all about me.

Wednesday, September 30, 2015

I wish it was just a towel issue

This morning, while in mid-transfer to my shower chair, I realized I didn't have a reachable towel.

Annoying for sure, but not worth trying to alter my transfer. I'd just get in my wheelchair post-shower wet. But I'd be able to grab a towel shortly after I was back in my chair. I've forgotten my towel before, so I knew I'd survive.

I also knew that if the no-towel thing was the worst thing to happen that morning, it would qualify as a good morning.

Stupid thought!

Soaking wet, I got in my chair OK. Then I turned on my chair. "CNTRL INHIBITED," it shouted back at me, and it wouldn't move. (Just to be clear, it didn't actually shout, but that would be cool, like a Kitt wheelchair.)

The chair gets errors like that not infrequently because the stupid designers put at the levers that make it a free-wheel instead of motorized (like a clutch) fairly out in the open and at a height that makes them easy to mistakenly trip. But there was nothing near any of the levers this time.

I tried flipping the power switch a few times, but that achieved nothing.

Finally, I had to call my sister.

She came down flipped the levers up and down, and when that didn't fix things, she pushed me out of the bathroom. She also grabbed me a towel.

She was going to get my old chair, but first had to go turn off the water in the shower. When she returned, I had her flip the levers again -- that usually works --and sure enough, this time it worked and was fine the rest of the day.

But if you thought that was the extent of the morning's tribulations, you'd be wrong.

I was drinking my morning "Jungle Juice," as my brother-in-law calls my Metamucil drink, when I  coughed and spilled a mouthful on my pants, which I then had to change with more help from my sister.

I survived, but I was pretty overcome, shall we say.


Tuesday, September 29, 2015

How to stop restless legs

I went to bed about 10:30 Sunday. I had been swimming so I took some Advil shortly after. And at 11m I turned off the TV to go to sleep.

At 11:01, my right leg started jumping.

Since Advil usually stops the jumping, at first I tried to ignore it. Then I tried pulling the covers off my feet.

When that didn't work, I turned on the TV and watched Judge Dredd. But that didn't help, not even when Stallone kills the crazy cannibals.

Finally, I decided to stand up, confident that the movement would settle my leg. But, and "buts" are never a good thing in my life.

Somehow, my boxers got hooked on my wheelchair and caused me to fall. Not only that, once I fell, they were still hung up, and I wound up giving myself a powerful wedgie.

Next, I had to grab my phone, which was lying on the other side of the better. Using my shoe, I got it and called my sister to help me get back in bed.

All that totally stopped my restless leg.

Sunday, September 27, 2015

Doggone fun

I went to a get-together Saturday with wonderful food, good people and a bunch of hilarious dogs. It was really hard.

I knew going in that it would be tough: talking about Claren and not having my own dog running around being goofy -- these puppy plays were Claren's favorite days, especially if they included a trip to the nearby pond.

But I wanted to go, if for no other reason than to show people I am not yet overcome. And I am not.

Friday, September 25, 2015

The worst grade I have ever gotten

If a cardiologist tells you your heart is performing at less than 50 percent and he wants another echocardiogram in six months, don't freak out, which is what I did yesterday.

I only went to make sure my heart was OK enough for the colonoscopy, and he totally ignored that.

I managed to remember to ask if a colonoscopy was OK, and he said yes, but I was kind of too stunned to ask anything else, like why my normal cardiologist, the top guy in the practice, wasn't worried in years past when my heart was basically the same, what were the implications of a pathetic heart and what a normal heart performs at?

Instead, I made Mom call back and find out these answers.

The heart is ridiculously inefficient, performing at 50-70  percent normally, a nurse told her. And this was no big deal.

Why the doctor didn't mention is not clear. He didn't seem worried, but ...

One of Mom's friends apparently had a bad experience with him, too, so it is not just me.

Onward to the colonoscopy.

Tuesday, September 22, 2015

Waiting for a new awesome

Now we wait. I interviewed with CCI for a successor dog Monday.

Normally, you need to go to New York, but they were willing to chat on Skype.

Mostly, I am excited about getting a service dog to succeed Claren. Mostly.

A small part of me is scared that I got too used to having an older dog and that I won't be able to train or exercise a new dog the way it deserves.

An even smaller part worries I am being unfaithful to Claren.

Mostly, though, I am excited, and I know it will be awesome.

Friday, September 18, 2015

I am so old

My niece and nephew have fallen in love with The Simpsons, which is awesome. Everyone should watch The Simpsons. I love that they come in my room whenever they hear Homer or Marge.

But I went through this with my older nephews. It makes me feel old.

I felt really ancient, though, when it occurred to me that my new physical therapist is closer in age to my 10-year-old nephew than to me.

Granted, she is a grad student but still.

Wednesday, September 16, 2015

I don't want to watch

Being doomed as I am does have one perk: I get to see the miracle march of modern medicine, though, of course, it can't cure me, but that's just being bitter.

I was thinking about this today at my painless echocardiogram. It is just to make sure the ticker doesn't conk out during the colonoscopy.

At my first one years and years ago, a mean, old nurse told a 10-year-old Matty to relax and not take deep breaths as she rammed the 3-inch-wide sensor between my ribs in a freezing room. OK, she was probably 30, but she was mean.

By contrast, today's technician did no ramming with her quarter-wide sensor. She did not, however, have the jelly warmer that they have when I get the ultrasound on my kidneys and bladder.

There is much more -- thermometers you don't have to shake, automatic blood pressure cuffs. But the echo registers at the top, probably because the first experience was so bad.

I get to watch another march, but this one is less cool: the inexorable downfall of my body.

I remember walking into appointments and hopping onto the table, then wheeling in but still getting on the table myself. This time someone had to lift me on, and the technician got Mom to help me roll onto my side.

If they'd just find a cure, I could go back to singing the praises of that alliterative first march.

Monday, September 14, 2015

'I'm doomed' to say there's no difference

My little sister gets exasperated when she reads comments to me on Facebook that suggest I have a good outlook on life.

What are you telling these people  different from what you tell your family, she yells; you're a bitter sad-sack (I'm paraphrasing because I lack her command of the four-letter word).

Now I have the answer: absolutely nothing!

I have had various medical appointments lately, like Wednesday's echocardiogram to make sure I am healthy enough for the dreaded colonoscopy next month. A friend at work noticed, and at lunch asked if I was OK.

"I'm doomed," I replied. And if that is not what I'd say to my family, I'm a monkey's uncle -- and my nephews and nieces are mostly homo sapiens.

P.S. I love my sister, and I may have put a modest spin on things. She does, however, have a fierce command of four-letter words.

Wednesday, September 9, 2015

What am I feeling?

When I was younger, I used to read Bob Levey's neologism contest in the Washington Post. People would come up with new words to match a definition, such as "You're beat after a long day of work. All you want to do is sink into the couch and watch TV. You turn on a show that you've been eagerly anticipating and have watched only once or twice. Yikes! It's a rerun! This aggravating phenomenon is called..." Deja view, of course.

I need him now because I don't think effing pissed is the right words.

I decided to get a lift system. I have been falling more than I like, so I figured a lift might be the answer. I wasn't happy about it -- it would cost a lot and it would be rather obvious evidence that I am getting worse.

But the lift didn't fit my body.

Mom and I agreed the salesman was actually not much of a salesman. He was not really interested in working to get the lift to work. Nevertheless, I won't be getting a lift at the moment, which I didn't want but would be safer.

Monday, September 7, 2015

A very Regal fail, and walkers say the darnedest things

And by "walkers," I don't mean zombies. My life is fortunately zombie-free at the moment. No, I just mean one who can walk. It is a little less ominous than "TABs," or "Temporarily Abled Bodied," which I agree with my older sister, sounds a little threatening.


I praised Regal Cinemas a few years back for being at the forefront of assistive technology that brought closed captioning to movie theaters. They are still the only theater chain I've been to that uses  captioning glasses, which are so much better than the pane of glass other theaters use. For a hard-of-hearing person in a wheelchair the panes never line up right, so you are constantly raising and lowering your eyes to follow the action on the screen or the captions.

But with the glasses -- you see captions and the action; they're awesome ... when they work. But the the last few movies at Regal Ballston, they have been less than great. When I saw Ted 2 (yes, I laughed and yes, I am embarrassed), the captioning skipped lines regularly.

It was as if the moviemakers were trying to save a few bucks by not having the captioners caption everything. Or maybe the captioners can't rewind the movies, so if they miss something, they just skip it. Or something.

Saturday, though, was a fiasco.

The captions regularly skipped lines in Ant-Man, but I was OK until the finale, when the captioning just died completely. I followed the last 15 minutes, but any quiet talk was lost on me.

After the movie, I returned the glasses. The woman asked how the movie was, and I told her the glasses died on me right as the finale was starting.  Oh, I wish you'd brought them back to me, she said.

This was the darnedest thing.

It would have meant leaving the theater, which would have meant wrestling open a door since they aren't automatic, riding an elevator to the main floor of the theater, explaining the situation, waiting for them to go get another pair of glasses, riding the elevator again, another wrestling match with the door, then retaking my seat. I figure I'd have made it back in time to see the post-credit scene, which incidentally really needed captions.

I didn't say all this, and she again asked, well, how was the movie. I again pointed out that the captions failed during the finale. Her response: A refund? A free ticket? No. "I'm sorry."

Friday, September 4, 2015

She has the easy part

My sister performed yeoman's work yesterday. First, she helped me up when I fell transferring to my shower chair in the morning. Then she came home from happy hour to help me up after I fell getting out of bed and called her not knowing she wasn't here. Actually, I think she also came home to mock her daughter, who came into my room, determined I was OK, told me her mom was en route, then left my room and me alone on the floor. Personally, I think my niece, was a little freaked by seeing her uncle on the floor.

So my sister worked hard, but have I mentioned how exhausting it is to call for help? It's more than I like to deal with.

I actually decided to try to buy a lift system that you operate yourself. Of course, accepting that I need one made me feel pretty crappy.

And it got worse when I went to a doctor who asked how Claren was. I told him she died and said all the usual things -- she had a good life, she was old, I'm OK. I felt like saying, I can't breathe again. But I didn't.

These might explain my tenuous grip on my tears yesterday.

Wednesday, September 2, 2015

Let's hope it isn't the shoes

I started hearing about these new shoes from Nike about a month ago.

The shoemaker apparently worked with a kid who has cerebral palsy to make shoes that met his needs. And they are a pretty neat engineering feat. There are no laces to do. the back and side zip open to let you slide your foot in.

It's a hightop, and I was looking forward to finding a shoe with more ankle support. I ordered one pair, and it was too small. I ordered another and it didn't fit a whole lot better. It also took my sister jamming my foot in to get the shoe on.

I'm sticking with my Salomons.

Monday, August 31, 2015

Sitting on the floor of the (garage) bay

I have been informed by one who knows me well that one sentence in my last post makes me sound like a "selfish asshole."

The line in question:

And part of me would not want to take any steps to get better but would just want to quit, blow my retirement and die.

I assure you my intent was to show neither selfishness nor asshole-ness.

As I was sitting on the floor off the garage yesterday, waiting for my sister to come home and help me up, I had time to consider this opinion. My bike moved as I was transferring out of it with Mom's help.

The point of the post is that I am feeling crappy, which maybe explains this feeling.

But maybe not.

My sister (who else would call me an "asshole") also threatened to make me watch Dangerous Minds to hear Dylan Thomas' "Do not go gentle into that good night." I do like Michelle Pfieffer, though I prefer Rodney Dangerfield's performance of the poem.

The post points out that only a part of me feels like giving up, and I am not sure that even Ms. Pfieffer's Cat-Woman could get that part of me to regret feeling this.

I rage just about every second I am awake.  It wears you out.

So while I will never, ever, ever give in to this part of me, I am not sure I'll ever not feel it.

Oh, OK, if Cat-Woman asks.

Thursday, August 27, 2015

What is my damage?

Writing is hard for me these days.

I don't know if it is Claren's fault (or how long I am allowed to blame my dead dog for things?).

It might be work, which us a little hectic at the moment.

I suppose summer's end is weighing on me, too.

Other issues, too, of course.

When I was waiting to see that GI doctor, I was reading FaceBook and learned a former colleague and friend's husband has colon cancer.

I admit I am a little worried about what they might find in their look from the top and the bottom.

And part of me would not want to take any steps to get better but would just want to quit, blow my retirement and die.

I seem to be coughing more, too, or at least am noticing it more. It happens at work mainly, so I suspect it is because I am eating and drinking while doing something else.  But still ...

Dang that Claren!

Monday, August 24, 2015

I go to the dentist

I went to the dentist Friday, and ever since I have tried to determine if my childhood dentist was the best dentist ever or a sadist of the Marathon Man variety.

I would generally opt for sadist, but he helped my brother through a sledding accident with his teeth, so ...

I grew curious because pretty much every dentist I have had since has kind of glided the pick over my teeth, maybe poking at key spots but nothing major.

Dentist #1 would roll up his sleeves and do his best to find a cavity. And it he found a tiny pit, he saw it as his duty to dig in it until it needed filling.

If he failed to widen it the first time, he also was not ashamed to try again, coming back to a tooth he regarded as questionable.

I guess it worked. I have had few cavities. But if not a sadist, a meanie.

Wednesday, August 19, 2015

The hard part

I was walking up rolling up the driveway the day we buried Gram with Mom's first cousin the priest. He was saying that now the hard part begins.

He meant that as the adrenaline of the funeral passed and well-wishers went home, the real world would intrude. We would no longer hear Gram asking for dessert ... but just a little piece or utter her little sayings -- I remember mon dieu seigneur.

That is where I am with Claren.

I am no longer saying good night to someone sleeping in my shower, no longer constantly run over and spill her water bowl, no longer tell an impatient someone I'll feed her in a minute.

It doesn't make me feel awful,  just a little sad, and I remind myself that any depressing thoughts are probably because Claren's gone.

PS: I know I sound a little one-trick ponyish lately. I'll get back to falls and jerky people soon.

Monday, August 17, 2015

Blue 2 the rescue

In that main photo of me and Claren a few days ago, you may have noticed stuffed animal Blue 2 adorning the back of the couch. Blue 2 was a gift from my nephew years ago. And he is again taking center stage.

Mom and I removed Claren's medicines from the shelf under the TV, but it left an empty spot. Blue 2, now wearing my CCI hat from the Inauguration, fits well.

Friday, August 14, 2015

Claren


Claren, my service dog and partner, died today -- it still hurts to breathe.

Let's be real, though, we were only partners like Batman and Robin are partners, Not the cool, kick-butt Robin either, but the one from the TV show who was a goofball at best.

I was definitely the dorky sidekick.

Claren is the one who danced with my friend at her wedding. She is the one strangers would stop and marvel at. Even today, one of the receptionists came out to the car crying and said how special Claren was and how everyone loved her.

But even much-loved dogs get old. Their bodies work less well. The allergy that they once ignored becomes overwhelming.

And such it was with Claren.

She was drinking a ton, her legs were weakening, and her skin allergies had become unbearable. She was one big sore.


So we made an appointment at the vet to end things. My vet was off today, but she came in anyway. Claren got a huge breakfast, topped off by a plate of whipped cream from my nephew and niece. Then my sister and I headed in.

The vet had a room set up with a table that raised and lowered all ready, so I didn't need to get out of my chair. Claren got right on, and they raised it to my level. The vet explained what would happen, and we all patted Claren. Some techs came in and put a catheter in. Then the vet came back, and when I was ready, gave her a sedative and then the final shot.

Claren hardly moved throughout.

It was the sedative that did me in, just seeing her eyes close and knowing they wouldn't again open.

And she died.

We sat for a while longer.

When life was hard for me, I'd go outside, get Claren to put her front feet on my lap, and press my head against hers. I imagined her taking the crap on herself and it made me feel better. I did that once more, then we left.


I can't overestimate how much Claren has meant to me. She helped me become more like the person I want to be, and I will always be indebted to Canine Companions for Independence for giving me this wonderful being.

But it doesn't stop with CCI. Someone took care of her Mom; Claren's puppy-raisers, Mary-Ann and Charlie, molded her into the loving dog I knew; the hundreds of people I met through CCI taught me so much about dogs and life; the cadre of walkers, water-getters, poop-picker-uppers and friends at USA TODAY gave their hearts freely; vets in Falls Church (Falls Church Animal Hospital), Herndon (Herndon-Reston Animal Hospital) and elsewhere treated her ailments; Dominion Pet Center (my first job!) kept me well-supplied; the folks at my new job welcomed her for the two years she was there; of course, my family helped so much; and it goes on and on.


Thank you.

I won't get into the theology of whether dogs go to heaven, but I know Claren is running, itchless finally, somewhere with her many friends, including Jack, Cleo, Sajen and Tanner, rolling in poop, diving into lakes and eating 73 meals a day.

I will get a successor dog, no doubt about that. But for now, I will be sad and miss my girl. 

Tuesday, August 11, 2015

GI Matty

I blame Dad.

As my kidney-stone issues keep improving, I turned my attention to a gastroenterology appointment. I have wanted to see a GI doc for a while to make sure stuff was OK. I had a note from my FA doctor and found  someone who sounded good.

I went in, hoping to weasel out of a colonoscopy.  I'm not 50 yet and the prep is so miserable for a wheelchair user, I thought my chances were good. Plus, stress.

Until she found out Dad had been diagnosed with colon cancer in June. It didn't matter that he is 78 or that surgery on him was successful.

"You definitely need a colonoscopy," she said. Not only that, but I need to start now, not 50, and have one ever five years because of my medical history, not every 10 as is normal.

On Oct. 7 I don't just have a colonoscopy either. I have an upper endoscopy. As Mom said, "They start at each end and meet in the middle." She is so funny.

Fair warning: If anything turns up in these tests, the bitterness in this blog so far will seem sweet as sugar.

And Dad probably isn't to blame.

Wednesday, August 5, 2015

Sing out loud

My doctor thinks my voice has gotten more slurry over the past year. I was actually thinking the same thing recently.

We discussed whether speech therapy might be in order but decided the thing to do was exercise my vocal cords.

I am not sure how to get away with reading out loud here. But my doctor suggested singing in the shower, which might be weirder.

Monday, August 3, 2015

This is your life, Matty

I looked into the mirror this morning and thought, "This is my life."

I had taken a shower the night before, but through no fault of my own, my sheet and boxers had urine on them in the morning. A urinal leaked a bit, meaning I had to call my sister to help me before I got up.

So, the "This is my life" look was not a positive one.

But then I got to work.

The friendly maintenance man smiled broadly to see me. I got to my cubicle to find it festooned with Avengers streamers. A friend left a lovely card, too. Then I got another card from my department. Then the friend who gussied up my cubicle brought me brownies.

I decided "That is my life," too.

Tuesday, July 28, 2015

All about the stress

I have been the beneficiary over the years of much medical advice from mom, and except for a badly infected toe that she totally blew off until I went to the doctor and was informed I had a fever, Dr. Mom has been on target.

Lately, though,  she seems to be more of a one-note medical professional.

Head hurts? Falling more? Restless-er legs? Stomach issues? Stress, stress, stress and stress.

The bigger problem? I suspect she's right.

Saturday, July 25, 2015

Be very afraid

I was certain that the worst thing about yesterday was going to be running off the sidewalk into street. One wheel, anyone, and an aunt and uncle were there to help me recover ... although if I hadn't been walking to the funeral with them, I wouldn't have been on the sidewalk.

But when I realized the processional hymn, I knew I was in trouble. I started crying, and it wasn't for my 90-year-old cousin.

The song was Be Not Afraid, and the thing is I am so very afraid.

I am afraid I will put Claren down to make me feel better, not her.

I fear what will happen when my chief helpers, Mom and Dad, are gone.

I worry what will happen if I have to retire before I am ready.

And so much more.

The song makes these claims like "If you cross the barren desert, you shall not die of thirst." But you will, unless you find a spring or carry your own water.

Similarly, "If you walk amidst the burning flames," you will certainly be harmed.

The refrain is more realistic, saying, "Be not afraid I go before you always," and a later verse says, "know that I am with you through it all."

But, and not to be too blunt, who cares? I expect that from God. I know misery is supposed to love company, and I do, if that company can provide any assistance.

Like my nephew wandering not my room, hugging me for no reason and leaving. He might have been checking to see if I had any cookies.

Like my sister, who spent a half-hour putting a new chaise lounge, then later helped me out of said chaise.

How is God better than an imaginary friend?

Wednesday, July 22, 2015

I need new vitamins

I am unable to swallow my vitamins anymore.

Well, that's not quite true. Sometimes they go right down; sometimes they don't no matter now much water I drink; and sometimes they go down the wrong pipe and cause me to gag.

Fortunately, I am a good gagger.

Sunday, July 19, 2015

Doctors, nurses, billing industry. What doesn't belong?

I love just about all the doctors, nurses, therapists, technicians, etc. I have come into contact with. It's kind of a shame, then that the medical billing industry is so very uncool.

Three incidents lately have reinforced this:

  1. I paid a $277 bill related to my sleep study in June. I recently got a bill from the same company for $330. I did owe $54 for a new thing, but they ignored the $277 I paid.
  2. I had some lab work done. They made copies of my insurance card and lab card. I was billed for the full amount because they said I didn't give my insurance info. A few days later Mom called, and they apologized and asked for my info. The very next day I received an Explanation of Benefits from my insurance company for the lab work that was filed before Mom even called in my info
  3. I paid a $350 bill by online bill pay, and I paid it to the wrong company. This was all my fault; I filled in the wrong box on my list of billers. The wrong company, also a health care firm, took my money even though they saw it was not owed them, then when we called, agreed to return it "in a couple of months."
No. 1 is forgivable. The other two? Not so much.

Wednesday, July 15, 2015

Go Set a God

I have not even thought about reading Go Set a Watchman. It’s not that I am suspicious about a “friend” discovering and publishing a rough draft of a favorite novel as something new. It is not that Atticus is a racist. It’s just that I haven’t had time. 

You see I, too, recently came across a friend’s scribblings that would later be rewritten into what some have called the greatest story ever told. My friend is God.

Some of the changes are just funny. For instance, the early version, the “Old Old Testament” paints Satan as the tempter in the Garden of Eden, but instead of a serpent, Old Scratch is a cute kitten. Apparently, God was trying to make the point that you need to beware even things that appear innocent. But an editor really thought it distracted from the overall point of the story and made Satan a snake.

Sometimes, God seemed to lose himself in the details. In the “Old New Testament,” Jesus’ genealogy goes on for 43 pages.

The most shocking change, though, comes when Judas leads the soldiers to arrest Jesus. In the version we all know, Peter pulls out a sword and cuts off a guy’s ear before Jesus tells him to put away his sword.

Here’s the original draft: “Jesus shook himself as if he were waking from a dream. ‘Thanks, Pete! Come on, boys, let’s show these jerks who the King of the Jews is.’ The lord then began calling fire and brimstone down on his arresters.”

By the end of the chapter Caiphas’ and Herod’s houses are smoldering ruins; their owners dead, and Judas? Let’s just say he doesn’t get a chance to kill himself.

Thankfully, an editor reminded God that Jesus was about “turn the other cheek,” so the rewrite makes it clear that violence is not the way to go.


I feel confident, though, that this original draft is something that needs to be read. And if it makes me rich, awesome. 

Tuesday, July 14, 2015

Trouble

Trying to be a good little incontinent, I go to the bathroom even if I don't have to. Or don't think I have to. Usually when I get there, I realize I did have to.

Today, on one of my proactive trips, someone was in the wheelchair stall. I went back to my desk because I didn't really have to go, but as soon as I got back to my desk, I did really need to go.

I went to the other bathroom on the floor because I really did not want to waste time with an occupied wheelchair stall.

Not that I like the other bathroom. Its toilet is still auto-flush. It does not have a vertical bar I use a lot. Worst of all, it is a reverse or my stall, meaning that bars I am used to on my left are on my right.

After straining not too fall, I succeeded in sitting and relieving myself satisfactorily. I even managed to get back in my chair.

Out of breath because of the extra care everything took,  I went to sit outside at lunch, and I actually started to cry.

I honestly do not know what to do about this problem, and if they ever get around to fixing the width of the wheelchair stall, it will only get worse as more people opt for the roominess of a big stall.

That extra width is why people, some of whom I consider friends, is why some use it now. I was in the bathroom when one guy came out of the stall and said: Sorry, just needed a little more room.

I sympathize. I need more room, too. Unlike others, though, I really can't fit in the other stalls.

Short of a lock on the stall, this is not going to change.

I can hear my sisters now. They would back the position of a friend at work I mentioned the problem to. She said I should knock and explain loudly that I need the stall.

It's hard for me to knock, to speak loudly and to hear, so lord knows what would happen if the guy offered a legitimate reason.

Even if the guy left the stall, he'd be back.

I know these guys do not wish me ill. I am sure they think of me not at all. Or perhaps, "I'll just be here a minute. Matt won't need it."

They're probably right nine times out of 10, 99 out of 100. But that one time really hurts me. It says to me that I am less than normal, that I am not entitled to a useable bathroom.

Monday, July 13, 2015

Take another little piece of my heart now, Claren

I told a friend that watching Claren near the end, which she is, has got me wavering about plans to get another service dog when Claren dies.

She agreed that it is hard to go through and said that while they do take some of your heart, they give some in return.

Like Black Widow, "I've got red in my ledger."  Not that I have killed people. The red in my case just means more marks in the "given by Claren" column.

Again like Black Widow, "I'd like to wipe [the red] out." I suspect, not being an international assassin, it will be easier for me to wipe the red out.

Granted, I'm not a superhero or agent of SHIELD, but all I need to do is love my dog. I can do that.

Wednesday, July 8, 2015

Stupid Metro manager

It never fails to amaze me just how difficult a loss off hearing can make things.

Last night, a jerky station manager demanded to see my MetroAccess card before letting me into the subway, which has never happened in the 10+ years of MetroAccessing.

No big deal, but he was in the manager's kiosk and was motioning for me to put the card through a little slot.

I keep the card in a sleeve that is attached to my chair, so putting my card in the slot was not easy.

I briefly debated telling him that I couldn't take it out of the sleeve, but that if he wanted to use his legs, he could wander out of the kiosk and take a look.

But then I figured he might wonder why and ask something, and I'd have to say "what?"

I gave him my  card.

Monday, July 6, 2015

Not as simple as 1-2-3

I am a writer. It is how I make a living, how I relieve some stress, How I make myself laugh.

But in grade school and up until physics really,  I loved math.

Writing was always subjective. I was (and hopefully am) good at it, but not everyone likes the same writing styles.

I loved math because 1+2 always equals 3. You are right or wrong in math, no subjective grading or thinking. At least  until the higher levels of math, which I was miserable at.

I find myself missing that mathematical certainty in life where there are no absolutes.

Just once  I'd like to find a question in life that is an absolute. But they don't exist. You think you have one, then someone else mentions a related issue and that leads to another, and soon enough your simple decision is polluted with fractions and square roots.

It is enough to make you want to write.

Saturday, July 4, 2015

Still restless

My sister and family left four days ago. Since then, I have been up at night three times.

It's not that I miss them. the restless leg medicine is not really working. Or when it does work, it makes my feet hot and uncomfortable.

Doesn't look like I'll be giving up my naps soon.

Mom said the failure of the medicine made her want to weep. Her and me both.

Wednesday, July 1, 2015

Dog days

My sister and her family have gone to Maine and left me with the dogs.

This means Kenny sleeps with me, but the boy is a freaking rock when he sleeps. Forcing him to move, if needed, can be a bit of a challenge.

But it is good to have him. He reminds me of what a young dog can mean. I need this because I find myself forgetting the value of a dog as Claren ages. I also find myself wondering if I want to go through this aging process again.

It is hard to witness Claren's various infirmities, but a real issue is that we have become quite separated. It is hard for her to be at my level anymore, and I find it hard to get on the floor with her. And even if I do connect with her, her skin allergies leave me unsure if she even likes it.

I owe Claren so much, and she doesn't seem unhappy. She greets me and rolls around in the grass, but she makes me sad these days. And, of course, that makes me guilty.

Gene Wiengarten says old dogs are the best dogs; I'm not sure.

Monday, June 29, 2015

Bad options

I fell in the bathroom at work Friday, and Mom is trying to convince me that I should start using a urinal of some type so I don't fall. I am not so sure.

Transferring is how my legs get most of their exercise these days. Also, if I stop transferring, what happens when I need to? I'll be really out of shape, and that will cause trouble.

I find thoughts like these almost constantly twirling through my mind. Which of two bad options is less bad? Is it any wonder I am tired?

Thursday, June 25, 2015

IDTMTAM, thank goodness

When I was younger, my older siblings would use IDTMTAM in a derogatory sense.

"IDTMTAM; It doesn't take much to amuse me," they'd snarkily say when I was legitimately amused by something awesome.

I am still easily amused. I was washing my hands at work the other day, and for some reason I started thinking about how my nephew sometimes writes that we're out of poop on the grocery list. I just started laughing out loud.

And I am glad. It would be a dreary existence if I didn't.

Monday, June 22, 2015

Thor is a god

The following could be considered a spoiler if:

  1. You read comics and care about the identity of the female Thor,
  2. but you are almost two months behind in your reading, so you haven't read the Thor issue with the reveal;
  3. you also managed to avoid the stories about the reveal not only on the usual websites but also in the New York Times and other newspapers.
If this is you, consider yourself warned.

The first comic book that I remember as mine (my brother will no doubt remember differently) is an issue of Thor when Loki brings a human news crew to Asgard to film Ragnorak.

I haven't really followed Thor much since then, so I never found out Loki's plan or how Thor overcame it. But I guess he did. He's still around after all.

Except he is no longer Thor. Apparently he was no longer worthy.

And the person who is Thor is a woman.

You found out last issue, which I randomly picked up, that she is Jane, Thor's onetime girlfriend and current cancer patient. And what she says about being Thor reminded me of why I said I was a Good Friday Catholic.


If you click on the page it gets bigger, but Jane says is: "We  need a god who understands what it's like to be humbled. To be mortal. A god who knows how precious life is. How delicate. a god who struggles every day to live a worthy life. Who suffers so that no one else will have to. A god who loves the earth enough to die for it."

Big-G God does all that, too, but people still hate, hurt, kill, get sick ...

Maybe I need to worship Thor.

Monday, June 15, 2015

Wow

For some reason, I have always gotten along well with the custodial staffs where I work, but the janitor at our new building stands out.

Today he was on his way out of the bathroom when I was heading in.

He held the door for me, followed me into the bathroom, opened the stall door and then shut it when I was in. Then he left, but as I went to the sink,  I saw he was still helping me: He had pulled out three paper towels for me.

Wednesday, June 10, 2015

Let me be clear: NO FALLING

I like to consider my posts requests/suggestions/prayers to God, Thor, my guardian angel, the X-Men, Leetah, and all the saints with whom I share a name, a sense of humor (Lawrence) or blood (as yet uncanonized).

Apparently, there was some confusion with last night's post about falling, and I'd like to set the record straight.

When I wrote that I didn't like falling and needing help, that did not mean that falling but not needing help is cool. NO FALLING!

That means no repeats of today. I transferred back to my chair OK and leaned back so I could settle back into my chair. Instead, I did not lean back straight. My back hit the left side extension, which sent me jerking forward and out of my chair. My head ricocheted off the toilet seat. My glasses went skittering under a wheel of my chair. BUT, I landed on my knees and can usually get up from my knees myself.

I stood up, sat down, leaned back carefully, put my seatbelt on, reached my glasses, went out, made sure I didn't have a huge bruise and sent back to work.

The whole thing almost smells of St. "I'm done on this side" Lawrence, but I hope he isn't that mean.

Tuesday, June 9, 2015

My pride goeth after the fall

Pride has no place on the gray tile floor of the bathroom at work.

So when someone, seeing my feet sticking out from under the stall, asks if I need help, I say sure. It doesn't matter if I am sure I'd make it back into my chair myself. Eventually, I would, but it would take a while.

The sure is said cheerily, of course, but cheer is usually the last thing on my mind.

  • I am sad I can't stand up myself. I am really pissed I can't even transfer from a toilet to my chair without falling.
  • I am embarrassed that some co-worker has to help me when my pants are done. Thankfully, I usually have my boxers pulled up. And I am more embarrassed that this has become such a part of my life that I am not really embarrassed.
  • I am thankful for their help and sorry for them that they have to do this.
  • I am annoyed sometimes that some people have "not seen me."
  • I am sick that this is happening with more frequency (twice in two weeks, and I teleworked three days last week).
  • I am mad as I sit on the floor willing my legs not to flop over or my feet not to slide. It never works -- the willing, I mean. I am not surprised, just mad that I need help in this most-basic thing. I also run through why I fell -- did I try to pull up my pants instead of just sitting on my chair in my boxers, did a leg buckle, which one? Whatever happened usually irks me because it is often my fault. And, of course, I have to hide this anguish, which is further annoying.

I am a tempest in a wheelchair. No wonder I am always tired.

Sunday, June 7, 2015

One thought

Not to criticize the president's eulogy of Beau Biden, but he said:

To suffer such faceless, seemingly random cruelty ... can make you beg for a lighter burden.But if you’re strong enough, it can also make you ask God for broader shoulders; shoulders broad enough to bear not only your own burdens, but the burdens of others; shoulders broad enough to shield those who need shelter the most.

I'd, however, like to propose a third option: Those of us who beg for a lighter burden daily who'd use the freed-up shoulders to "shield those who need shelter the most."

Just saying.

I think I am pretty broad-shouldered, broad enough to help others even.

But outside family and a few friends, I am rarely asked to shoulder anything that isn't related to my "random cruelty."   

Thursday, June 4, 2015

Back to mouthpieces

I need a shave.
I am trying to decide if I should start wearing my new dental appliance tonight.

I got it yesterday from the sleep people as a mask alternative. It starts in the neutral position, but then you ratchet your lower jaw forward. It is supposed to open your airway when you sleep, so no more sleep apnea.

I remember how sore my mouth would be after I turned the expanders I had. I wonder if this will be as bad.

You wear the device at night, then pop in the "AM Aligner" when you get up to put your lower jaw back where it should be.

It sounds like I am asking for mouth pain.

I am also leery of messing with the shape and alignment of my teeth. Years in braces, expanders, bionators and retainers paid off, and gave me good teeth. If this screws that up ...

Oh well, got to try.

Tuesday, June 2, 2015

Sleeping soundly still a pipe dream

Apparently, startling 11 times an hour is hardly sleep apnea. It sounds awful, but five times is normal and 50 is serious This from my appointment today with the sleep doctor.

My breathing is not bad, which is good; my restless legs, what he called limb movement, are not so good. Even though I think the medicine is working, he wants to double it to try to allow me to sleep better. I am going to email the neurologist about that.

I am also going back to try a dental appliance to help the modest apnea. It costs a fair bit and is only occasionally insured. Ugh.

I was hoping I might fix my breathing and that would end my need for naps. Won't be that easy, but when is anything?

Saturday, May 30, 2015

Awesome-ness

My little fist costume is lame next to these guys.
Once again, Awesome Con did not disappoint. John and I only stayed for a few hours, but I could have stayed for hours just watching people. I am also curious about the results of the panel: What superhero would make the best president? So maybe next year I spend the day there.

I only sort of dressed up.

Steven Hawking appears in a Simpsons episode with a souped up wheelchair,  complete with boxing glove. So I got a boxing glove, which Kenny is still afraid of because my niece taunts him with it. The pimped chair has rocket motors on the outside of the wheels. I didn't want them because it is hard enough to go through crowds with a chair. I didn't want to make it worse. Same thing with the helicopter.

But I got to see my nephew from Boston and had a blast.

Wednesday, May 27, 2015

Stinking creativity

One of my big bosses favors a theory he read about in a book called Steal like an Artist. The idea is that by limiting your color palette you unlock your creativity.

My wheelchair limits my palette significantly, so you'd think I was the most creative boy in school. What it actually meant this week was being stuck in a stinky bathroom stall.

When I got to work Tuesday, the whole bathroom smelled like something died in the pipes and was stuck there. After I flushed the toilet in the wheelchair stall, the smell dissipated a bit, but it became clear that the dead rat was in the pipes leading to the toilet in the wheelchair stall.

How do you complain that a bathroom is stinky? I was at a loss, so I just held my breath and hoped it would be OK today.

It wasn't.

Finally, I contacted the building manager and said: "I know it is odd to complain a bathroom smells, but ..." They cleaned it, and it was fine.

The stink did have one benefit: No interlopers. Who wants to sit on a nasty-smelling toilet when you don't have to? I went back after it was clean, and someone was in there.

I used my unlocked creativity to devise befitting tortures for him.

Monday, May 25, 2015

Things fall apart

Having read TS Eliot and Chinua Achebe, I know things fall apart.  I just wish I wasn't one of those things.

Memorial Day is always hard. I know it. Everyone knows it.

I read most of the day so that kept sorrow at bay for a bit. But as I got settled for the parade, Claren wandered back into the house, meaning this was the first parade without her at my side in years.

I am not sure I even want to dress up for Awesome Con.

Wednesday, May 20, 2015

Don Johnsoning it, sort of

I am not a huge fan of Brooklyn Nine-Nine. It makes me laugh, but I am easily annoyed by Andy Samberg. It comes on right after The Simpsons, though, and the strong cast includes Andre Braugher, so sometimes I watch it.

But credit where it's due: It helped me survive plunging my hand in the toilet at work yesterday.

In the episode Sunday, Andy has to go undercover at a fancy restaurant, but the only sport coat available is too big. Someone tells him to Don Johnson it. They riff on that a little, then to the strains of Jan Hammer, Andy walks into the restaurant with the sleeves of the sport coat pushed up.

On Tuesday, I went to the bathroom (thankfully just making my bladder gladder) and as I got up I slipped. To keep from falling I put out my hand to find purchase. Well, the purchase I found was in the toilet bowl.

Somehow, I did keep from falling as I jerked my arm violently out of the water. I even managed to sit back in my chair.

Everything was wet. The floor, my sleeve and most of my shirt, parts of my chair ...

I was nearly ready to leave for the day, so I just rolled up my sleeve, Don Johnsoning it as much as I ever do.  Thank goodness I don't wear sport coats.

Sunday, May 17, 2015

Can't breathe

I learned a few things Friday night at the second sleep study -- this one to gauge the proper use of the mark.
  • I really need a mask. At the first sleep test, I woke up 11 times an hour because of respiratory events. My oxygen, 98% when awake, dipped to  low of 81% when asleep.
  • I can't tolerate the mask. We tried five types, even just nose ones though I breathe  lot through my mouth. They said they use a chinstrap to keep my mouth closed. Yikes. Fortunately, they never got as far as the chinstrap. I choked even before that. The nose ones blew air up my nose, which isn't clear. I could breathe with the full masks but I got scared of having it on. It felt wrong.
  • Even if an tolerate it, I don't foresee being able to do or undo myself.
So it wasn't a fun night. Mom will  call the sleep doc tomorrow to figure out options.

Wednesday, May 13, 2015

Crumbling

I have sleep apnea and have to go back for another overnight study.

This diagnosis is not really a surprise. I snore violently. I am always tired. And my body has proved remarkably good at failing in the most basic things, walking, hearing, peeing -- why should breathing be different?

I am not ignorant that if they treat this successfully and if it makes me less tired, I would regain two hours of my life that I now each day.

But, when you are dealing with my body, those are big ifs. Mostly, I find this insanely defeating. Yet another part of my body crumbles.


Monday, May 11, 2015

Matty and the CHOPper Bunch

I forgot one thing about my visit to Children's Hospital of Philadelphia, which is known as CHOP: I am part of their tracking study. 

Not really a big deal. They took some blood and a cheek swab, and had me do an evil pegboard test and a weird eye test. That's it.

I'll go back annually or so they can see what it looks like to kick FA ass. It'll also give me a chance to ask where them treatments are.

Friday, May 8, 2015

The things I let the medical establishment do to me

And you can't see the ones on my chest, legs
and finger.
We got to the sleep study 15 minutes early because a certain little sister kept saying I'd be late if I left when Mom and I wanted. Actually, we'd have still been early.

But we got there, checked in, and waited.

Then a technician came and took us to a room, and we waited some more.

They put a hospital bed in for me, so Mom got to sleep in the double-bed. I got in it, and they hooked me up to all sorts of sensors. And then I went to sleep, sort of. I did not sleep well.

It was my first night in a hospital since I was born.

The technician was great, though. She watches you by video camera, and she heard me calling for Mom to turn on a light before Mom did.

If something was real bad, she said she'd put me in touch with the on-call doctor, but apparently it wasn't so I'll wait at least a week for my doctor to get the results. Then we can decide if I have sleep apnea.

Tuesday, May 5, 2015

Long day's journey does me right

The doctor's visit was good.

He gave me some medicine for my restless legs (well, a prescription). And it works! And it no longer makes me woozy.

And apparently, I am very, very, very unlikely to have FA-related cardiac problems. This pleased Mom greatly, but cardiac problems aren't a big worry for me.

He seemed unconcerned about my stomach issues, or untroubled by them. He did not think them indicative of great woe (just mediocre. HA, I kid).

And he thought I would benefit from hearing aids. I am a bit skeptical of this, but it would be awesome. Hearing was actually an area he thought we could do something about to improve my quality of life. He is going to reach out to some other doctors who did a hearing study on me and see what they recommend.

The other area he thought they could improve was sleeping. He did so with the restless leg medicine, but he also suggested a sleep study. I snore badly, and sleep apnea is not uncommon in FA patients. This  made the trip not a total bitter bust as sleep apnea can kill you.

Finally, he talked a lot about the treatments that are in the pipeline. I would be leery of doing that if I were a doctor to avoid creating false. Maybe he really thinks at least one will pan out.

I go for the sleep study Thursday.

PS: The doctor is Doctor Lynch at Children's Hospital of Philadelphia.

Saturday, May 2, 2015

Interlude

I know I need to talk about the doctor visit but other stuff keeps popping up.

For instance, do you think  my teleworking brother-in-law was the first person to step away from a teleconference to pick a naked relative up off the floor?

Then last night I did start writing about the visit, but I had a situation that required Mom and a change of clothes.

Then today, I woke up after sleeping through the night -- with nary a leg kick.

This was, I assume, because of a medicine the doctor prescribed.

The only problem? I have felt off the whole day.

Wednesday, April 29, 2015

What to expect

I haven't seen a neurologist, let alone an FA specialist, in years. So  I would like to think that tomorrow's doctor visit would bring me lots of answers. I don't think it will.

I fear that mostly it will remind me why I rarely visit a neurologist: FA is untreatable; FA affects different people differently.

On the plus side, a friend at work said the hospital is awesome.

Saturday, April 25, 2015

Doctor, doctor, give me the news

Mom and I put together a short list of questions for the FA specialist on Thursday. Of course, I won't ask the main questions on my mind. Not the God questions, though I won't ask them either

The future questions are the ones I want to know.

  • How much worse?
  • Will FA keep me from working? When?
  • Will it kill me? How?
  •  What's my life expectancy?
The last one he might be able to answer generally. I am too scared to ask that, though.

I know it is rather pointless to know the future. Not much I'd do different if I were going to die tomorrow. Maybe be nicer to God, buy my niece a life-size TARDIS and my nephew a dancing Groot. Other than that ...

Not that I don't have regrets -- "more than a few" -- but nothing to do about them now but regret them. So I do.

  I guess that means I have lived a pretty good life. Not that I am ready to die.

Thursday, April 23, 2015

What a waste

I did not expect to be typing this on my on laptop, but here I am.

A friend and I were chatting at lunch about our older Macs. He said he ordered s memory upgrade and would let me know how it worked. The next week he said it installed easy and worked well, so I ordered some myself.

It does seem to be working well, but easy installation? Nope.

I asked Mom to help me with it last  night. The first step -- remove battery -- almost stopped us. The pull tab on the battery came off without the battery coming out.

My little sister came out and began helping. We got the battery out, but one of the screws would not come out. After an hour, we gave up.

I was so frustrated -- not that the laptop was out of commission or that the upgrade did not get done -- but because I had wasted an hour of my sister's and Mom's time.

I hate burdening others.

A Geek came by and installed the memory in 15 minutes.

Tuesday, April 21, 2015

I want one

I always approach stories about wheelchair users with my teeth gritted. If they aren't inspirational, they are wheelchair-bound or confined to a wheelchair. I was shocked when I read this story, though, about a child whose wheelchair was stolen. He got another after a woman heard the story and empathized because:

Her firstborn also lives life on two wheels ...

A two-wheeled wheelchair? That is awesome ... well except I'm pretty sure it's impossible.

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