My latest near-death experience is scary

I can shrug off  falls, but what happened Friday night still bothers me.

My heart seems OK after the ER trip, but I have a nasty cold. It was causing me to cough, so I took a cough drop in bed. I sit up in bed, so that wasn't too foolish.

Except I coughed, then took a deep breath. Down one of my pipes went the cough drop. All the way.

My heart breaks again

Once again, hospital TV shows have let me down.

I spent most of Thursday evening in the ER hooked up to a heart monitor. At points during my stay, an alarm went off on the monitor. Not once did a nurse rush in screaming "CODE BLUE" OR "I need a crash cart stat."

I also was receiving a saline IV, but not once did someone sneak in and try to inject poison into the IV. Well, the nurse did inject an antibiotic that almost made me barf, but that doesn't count.

It was not the coolest way to spend the evening.

I wasn't feeling awesome during the day, so my plan was just to nap, but Mom and my sister decided to take my blood pressure. It was quite low.

We called my doctor who thought I should be seen, so in I went. They measured my blood pressure as low but were most worried my heart rate was 45 bpm. What the hell? I was practically a zombie and didn't know? They did an EKG and sent me to the ER.

Once in the ER, my heart and vitals seemed fine. But one of the blood tests was weird, so the doctor did other tests, which were all fine, and waited till I got the full saline IV in me to retest the blood. It should have gone down at that point. Instead, it went up.

That was when they started talking about admitting me.

They decided to give me more saline and retest. That one did behave correctly and I got to go home, about 11:15 p.m.

Mom and I went home

Fame and I questioning the Big Guy

I went to a funeral this week.

Of course, I couldn't really hear anything so I spent a lot of time just looking at the closest statue, one of Jesus, showcasing his sacred heart. I asked various questions that I thought were important, pretty much life or death to be honest. But I got no answers.

For different reasons -- it was  an afternoon funeral that   made her late for dinner -- Fame also asked the statue a few questions. She appeared to anyway, staring at it with her ears raised.  I am not sure, but I believe the questions were: Will you feed me? For the love of God, why is no one feeding me?

She apparently got her answer because she then went to bed for the rest of the funeral.

Faithfully, my Nativity

This year I decided to adhere to traditional Nativity roles, or as traditional as one gets when action figures are involved.

The figures on the left are my three kings -- Grodd, Max and Archer. Grodd is king of Gorilla City (or pretender depending on which continuity you follow). Max is king of the wild things and Archer of the Gorgonites, of course.

Goat Boy, a wild thing, is one of the livestock.

Santa is just there to ensure everyone has a cool Yule.

Cosmic Angela serves as an angel because she is the only accessible figure with wings and ("not much else, says Mom).

Jesus, Joseph and Mary come next.

The Dewback is also livestock, and the stormtrooper will keep in from causing a ruckus. I don't have any shepherds. I know.

Finally, in the rear are Buffy the Vampire Slayer and Batman. They will certainly protect the Nativity. But come on, name one thing that would not be better without Buffy and Bats?

Here are the ones from 2007,  2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015 and 2016. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Be careful what you wish for

The bathroom at work really stunk yesterday, unfortunately not a one time thing. Again, it smelled like something died in the pipes.

Another distressing regularity: The bathrooms at work are not often well-cleaned.

So I was quite pleased when I went in the bathroom later, and it smelled fine. It had been cleaned before I complained!

My joy faded a bit when I went in the wheelchair stall, and found a wet floor in the middle of the stall. Granted, that is where the drain is, but who wants  something-died water on one's wheelchair?

Not fir-ever

Once, when I was a child, I was setting up the village underneath the Christmas tree. I think I pulled something a little hard, and the next thing I knew, the tree fell down on top of me. I wasn't hurt and neither were the tree and ornaments.

No such luck this year, when I backed into the light cord and brought my tree down. Several ornaments broke and half the light no longer work.

My sister came into my room at the sound of the crash. I just sat there, not saying anything. It is probably a good thing as I was so mad.

As with the lift, Mom tried to take the blame, saying she shouldn't have left the cord for the lights hanging down. Mom's wrong.

The tree has been with me since 1995, through moves from North Carolina and Herndon. It's a good little tree. Too bad I broke it.

Tis the season

We put up my Christmas tree over the weekend.

Well, Mom put it up and decorated it. I unwrapped the ornaments.

It always makes me sad, in both a good and not so good way.

Ornaments, like the red disco ball and the flat angels, remind me of both sets of grandparents, reminding me I sure miss them. I have an ornament of a yellow dog for Claren, and I miss her, especially her lightning-fast hurrying tendency (really missed on  cold nights like this).

But, there's the less good.

I see a fish and am reminded how much I loved tropical fish -- everything about them. Watching them, feeding them, cleaning their tanks. But I had to give it up. I can't care for myself these days, let alone fish. Same with the parrot ornaments. The worst are probably the horse ones.

None of this is surprising, which also makes me feel kind of sad.

Broken

We broke my lift yesterday.

I say we because Mom insists it was her fault. I know better.

I am the one that needs the lift. I am the one who called her and asked her to come her me off the floor. I am the one who was sitting on the floor right near the leg brace and didn't notice it was caught under my chair. I didn't even notice it was trapped under the chair when the lift wouldn't raise up.

Of course, it did eventually raise up ... after it broke the brace.

A new one is coming, till then we are improvising and I am still mad.

Saved

My joystick cover is too big to fall down the crack in the floor where an elevator's doors are.

Who cares, you says, only a doofus could knock it into the crack.

Just call me a doofus who is really glad.

Working with my family

On Thursday, exterminators visited our office. I was home teleworking, but when my friend mentioned it to me, I worried Fame's bed might get bug spray on it.

My friend had told me at lunch, and on the way back to the office, we ran into our program's safety coordinator. He wasn't sure, so I planned to check with the building manager. My friend, though, offered to carry the bed out to the car, so I was set.

I swung by her desk to thank her, and it turned out I didn't need to call the building manager. She had already called him and learned that the exterminators would just be putting out traps.

When she heard this story, Mom laughed and said it was "like working wit you family" because everyone is looking out for you.

This seems to happen wherever I work. On 9/11, someone carried me down the steps from the 22nd floor of my last job. My boss always got Claren water.

Mom was also talking about the person who sewed me a new wheelchair pouch with some awesome material she picked up

This friend also gets some of the family dynamics.

On Friday, we were chatting and I forget why but I said to her, my sister told me about a kid at her school who has Christmas lights on his wheelchair. (She also apparently told him that he drives as bad as her brother.)

My friend responded to the light comment by saying, we could  do that to yours right now (I work next to a Target). I replied, but my sister would make fun of me. To which she said, Matt, your sister will make fun of you anyway.

Today is that sister's birthday, so before she yells at me for allegedly being mean to her in my blog again, allow me to say that she puts up with an awful lot -- middle-of-the-night calls for help, falls, my unique way of thinking (she might say stupid) -- and I am very lucky to have her. I might even admit to loving her. But I will NEVER give her a guest post to try to rebut my claims!

Good or bad

My sister and her daughter were discussing the nature of mankind: good or evil. My sister said most people are good. My niece said, well we studied Calvin in history class and he said people are evil. (Two things: I love that my niece brings up history class, and  I am not sure it was Calvin.) Here are my two cents:

Again, I was on the bike trail. Fame pooped. I lined myself up to pick it up, bent over, couldn't reach, reset my chair, tried again, couldn't really reach and was bent over for nearly a minute. Someone stopped then and helped me. More people passed right by.

It was pretty apparent, I believe, that I was struggling.  But most people decided not to offer help.

Mom said to focus on the guy who did stop, but that means ignoring that most people don't care.

The streak goes on ... damnit

I am starting to question the wisdom of not falling down in the bathroom at work.

I transferred back to my chair OK the other day, but pulling up my jeans sent me slipping off the front of the chair.

I should have just slid down and called for help. Instead, just like earlier this month, I reused to give in, exhausted myself, and didn't need help.

The enemy of writing

I was off this week. Writing was supposed to ensue.

Instead, a cold happened.

I suppose I could have written, but everything would have read: "Oh, my throat hurts; I can't stop coughing; I may die."

Surprisingly, I didn't succumb. But now vacation is over. I head back to work Monday with very little to show for my time off.

I live a mostly responsibility-free life, so I did very little. I took Fame for a long walk each morning and then slept and watched TV.

Bad to worse

Saturday was bad.

I went for a walk on the bike trail. It was kind of cold, so I wore my glove (I only wear one glove, like Michael Jackson, pre-weirdo days).

But the glove extends my finger, so it fiddles unintentionally with the speed knob on my chair. This means that I'll be driving along and all of a sudden be at a speed higher than I can  control. This is how I ended up in a ditch, mostly off the trail.

I couldn't get back on the trail. I needed a push. Five bikers passed me by, two moved to the far side of the trail, making clear they saw me, and just kept going.

Finally, I asked a walker for help and he pushed me free.

Then, at a bike trail crosswalk, I was in the middle of the street when a driver decided to ignore his yield sign and  speed through the crosswalk before I got to him.

These events were just the beginning.

No one was here at night but me. That should have been fine, but I slipped getting off the toilet. I tried numerous times to get up, but my feet kept sliding and my legs were on opposite sides of the super pole, so slipping back down was not comfy.

Finally, I decided to slide out into my room and watch TV on the floor till someone came home. I got out into my room but couldn't sit up.

After many tries, I called my sister to see when they'd be home. Not for a while. She started calling neighbors and her friends. I have one friend in the FC, but she is out of town. None of my sister's friends were home either.  She called Mom and Dad who told her they were leaving, which meant once they heard I was on the floor, they were leaving, so I waited for them.

While waiting, I did sit up.

Yeah, MetroAccess

I have criticized MetroAccess in the past, and the worst thing (OK, maybe not. I have been rereading about my rides) has been that every three years since I first signed up in 2005 is that I have had to go in and prove I am still disabled.

So I was ecstatic when we called this year and they said I didn't have to come in. Today, my new ID came in the mail.

Yes, it is silly that someone with a disease that is only going to worsen over tine has to reapply every three years, especially because the application features pages a doctor must fill out, but baby steps.

The non-dumbass way to take off a sweatshirt

"I can't believe you told me," my sister crowed. I'm kind of regretting it.

Last night, I asked for help taking off my sweatshirt. I don't know why you try to take it off in that "dumbass way," she said. I pull it over my head, and this time, got stuck.

She suggested I take my arms out first, and she encouraged me to ask my super-awesome physical therapist, who I was seeing today, how to take off a sweatshirt. "Suggested" and "encouraged" are not exactly words one should use to refer to what my sister does. Maybe if there are curse words around them.

My PT sympathized with my plight of having my sister be right (for the record, she often is and she does have to deal with me), but my PT agreed that arms first is the way to go. Her explanation: One's arms move in a lot more directions than one's head.

My PT did say one thing that made me feel better: Older sisters are always right. Take that, little sister.

Matt the NASCAR driver

I never imagined I would compare myself to a NASCAR driver, but like a driver who crashed on turn #3 of Daytona International Speedway, I found myself graded a DNF after last week's in-home sleep study: Did not finish.

It was supposed to be easy and non-invasive. All it consisted of was a headband with a microphone, and breathing tubes that went in your nose. Pretty simple.

But it drove me crazy. I couldn't relax, and I started getting panicky and breathing deeper.

The main problem, I think, is that I couldn't watch TV or listen to music to distract me.

I had to give up.

I am trying another type this week. I can watch TV!

I hate my feet

My feet are stupid. They get cold easily, but they also get hot. As a result, I often sleep with my feet outside the covers, a trick I first saw when John Candy did it in Cool Runnings.

This technique seemed to work until last night when I tried to go to sleep after some TV: My feet were cold.

I was unable to cover them up by using my legs, so I pulled out my newest ability: sitting up in bed. The only problem is that leaning forward is still a challenge, and this time I fell to the right, trapping my arm between the bed and my chair.

I was unable to activate Siri on my watch to call for help (I took off the case to prevent this from happening in the future), and a few times I did feel the panic rising inside me. But I wasn't in pain. So I swallowed the panic and wiggled my right arm until it was free.

I then used both ams to sit up, but I fell over to the right again. And wiggling only wedged me into my chair and hurt my back. Once again, I was starting to panic.

I thought about asking Fame to speak. I have been working on this, but I was worried that asking it of her would take pretty much all my energy, meaning if she didn't, I'd be screwed.

Instead, I managed to flop my whole body over, turn on my chair and drive it out of the way.

The path clear, I oozed onto the floor, leading with my head. I then turned over and used Siri to call my sister.

I made it!

I have not fallen in the bathroom at work in a long time.

I know that is asking for trouble, but it's true.

Anyway, I transferred to my chair today, then started sliding down off the front. My armrests were in my armpits and I was thisclose to just sliding all the way down and calling for help.

But then I thought, this is no way for the streak to end, so I started pushing myself up. I was getting there, but then I started sliding down again.

Again, I didn't want to give in, so I managed too brace one leg against the stall wall and push myself up.

I made it!

The only problem was I was exhausted by my stubbornness, I just wanted to nap.

I need a costume

When I go for walks on the bike trail, I often ask a friend if she wants to join me. She lives like a block from the trail and a block from my grade school, so close.

Yesterday after I texted, she told me that she was preparing for a Halloween party at the house of her friend who lives on my street and that I should come.

I said I'd try but was a bit dubious that it would be accessible. Her friend lives in one of the tall, narrow houses around here. My friend said it was out back, though, so I put on my Batman T-shirt and went up to see.

I probably would have turned right around shortly after arrival because I had to go on damp grass at a modest angle, but my friend was determined and pushed and braced me.

That was how I ended up spending an enjoyable few hours with a fox, a doctor, some X-Men, an astronaut, the social media cloud, some warriors, a Star Trek captain and more. Fame liked it, too, especially the little dog who had on a T-shirt that 'I am really a cat in disguise."

Testing 1, 2, 3, 16

I going to take all of your blood, Matthew, the phlebotomist joked as my Thursday kicked off.

I'm alive, so I guess she was exaggerating, but it was a lot -- 16 full vials and two half-full vials discarded because the blood stopped flowing. The three punctures in two arms and big bruise in one tell the tale of a serious blood test.

But I didn't faint.

After that I came home and had breakfast, provided a urine sample (never easy for me -- just the logistics) and laid down for 45 minutes.

Then I was off to a pulmonary function test, which showed I have about 60 percent of the lung capacity I should have. This didn't worry the doctor. Neither did my shortness of breath.

He is more concerned with my mild sleep apnea, which he is confident will get worse. When he was mentioning treatment options, Mom mentioned that we need simple options because I can't do hard stuff. He replied by suggesting a tracheotomy. Sort of.

He said: we're not there yet, but a tracheotomy is an option. You'd not use it during the day and just open it at night.

Rather than surgery, I am first going to have an at-home sleep study.

The frustrating thing is that I was not worried about my apnea. My doctor mentioned it in some notes after my recent physical, and that is what the pulmonologist took his cue from, not what I was saying about my shortness of breath. Whatever.

I finished my day off with a pneumonia vaccine.

Working from home

My division is going to a national wildlife refuge tomorrow. I'll be teleworking.

The main reason I am not going is I don't have a  ride, even though I know Mom would drive me.

I thought about asking a friend for a ride, but that would mean someone would have to push me around because I couldn't push my manual as needed, not to mention loafing me and the manual into their car.

 It's too much to ask someone.

I'd also need to get picked up from home as I can't go to the restroom at work in my manual.

Plus, public restrooms aren't the best. Too many unknowns.

I hate being disabled.

Therapied

I spent yesterday afternoon at my awesome physical therapist's, where I got a hat as a thank you for speaking to the class of grad students, and a speech therapist who my PT, my sister and my sister's speech pathologist friend all say is awesome, too. She was.

So it was a productive day, even if Fame didn't get to eat till 6:15.

It's not like this is a surprise, but my PT confirmed that we humans were not the star of the class. She said she was fielding questions about Fame for days after, which I'd expect. Fame is cooler than I, though I do have a more interesting neurological condition.

My PT also gave me some exercises to try to improve some issues and confirmed some of my thoughts.

The speech therapist listens to my problems, watched me drink and then recommended this strength trainer for your lungs. It sounds cool and if it works, I'll breathe, speak and cough better.

Go me.

I ❤️ my cardiologist

I went to the cardiologist today for a follow-up on my stupid heart. I should have known it would be a good appointment when he saw my UVA sweatshirt and he pulled his undershirt up through his collar so I could see it was a UVA T-shirt.

It got better.

I told him "I worry about my heart." His response: Don't worry about your heart; let me worry about it.

He then went over all my worries in-depth. He agreed I should have a pulmonary function test to get a baseline, and he did point out my body parts are degenerating because of Friedreich's ataxia, although he used a kinder word like deconditioning. But he made it very clear that my heart is fine and not worth worrying over.

It was pretty great.

No more worries

Mom asked recently if I was going for a walk with just Fame to tell her all my worries. I said no, and she asked why not, pointing out that I used to tell Claren my troubles.

She had a point, but I am not going to start spilling my guts to Fame -- she doesn't need that. The more I  thought about, I came up with three reasons.

First, I am dumb. Lord only knows what I did to Claren by telling her my worries. With Fame, I stick to song lyrics and happy words.

Second, in retrospect, I think Claren was an "old soul." She was happy I was her person, but she was more than happy to "love the one you're with." Fame is, too, as long as I am there.

I hesitate to use the word "clingy" because I find Fame's neediness what I need, but anyone who has seen her upon my return from one of the rare trips without her knows what I mean. She jumps into my lap as if to say "OhmygodIthoughtyouhadleftmeforever. Then she pins herself to my chair. When I returned to Claren, she was like, "'Sup."

Finally, I lived alone when I first had Claren. I needed to talk to her. She was my worry-eater, my version of a sin-eater. Now, Fame can be a service dog; I have Mom as worry-eater!

Lights out

Friday is my busy day, but I had to make time to complain again about the lights in the bathroom going off while I was in the stall.

It is dangerous that this happens not infrequently.

And it is frustrating that one of my jobs seems to be telling people about allegedly accessible thing that are in reality potentially lethal.

I was interviewing one of our former leaders. An old timer, he talked about how the agency had had to learn a new way to deal with something, just like you are doing for us with wheelchairs. I wish I wasn't.

It's a wheelchair stall

I work with a guy who frequently asks me if he can use the wheelchair stall to change his clothes. I don't understand, particularly since one of my friends mentioned the gym in our building has a locker room, but I say yes.

I mention this not to make certain sisters angry. I am not using the stall. He is a nice guy. I am sure he thinks he is being kind.

But it is frustrating.

It requires me to judge my bladder -- not the most trustworthy of organs, not that I have a trustworthy organ.  How would you feel if a co-worker asked you if you had to go to the bathroom? That is essentially what I am being asked.

And believe it or not, wheelchair stalls are meant for wheelchair users to use to go to the bathroom, not for clothing changes.

I don't know how to say no. Mostly, I don't get how a nice person who knows and regularly helps me out can be so tone-deaf on a disability issue.

But then

The day started off well enough. I worked with my in-home PT and felt good. But then ...

• I went for a walk on the bike trail. I think I was too alone with my thoughts because I started to feel rotten.
• I came home and had lunch, and my legs started to jump. It is a challenge to keep one's for on the footplate when one's legs are jumping. I decided to do some standing exercises at the pole by my bed to settle my legs, so I asked Mom to stay up at the house for a bit. Good thing. I undid my seatbelt and started to stand, only to have a leg jump, and send me falling over at the waist. I didn't fall, and Mom helped me back into my chair. I did a few stands, then my left leg went off again -- this time while I was standing. Mom and my arms got me to my bed, but my legs were still restless.
• After dinner, I went for a walk. It was a beautiful night, so I got on a sidewalk to go farther. I went up a curb cut, turned my chair down so I could safely maneuver on the sidewalk, turned to go on the sidewalk and immediately ran into a storm drain section of sidewalk that was significantly higher than the other sidewalk sections. I turned around but got stuck. I managed to free myself but then had to hunt up my joystick knob, which had fallen off. I finally recovered and started home, but Fame had to poop. I got stuck again -- this time trying to pick it up but again got free. 

Never trust good mornings apparently.

Lucifer is fun

Last night, I finished catching up on Lucifer.

I realize it is a little suspect theologically. I mean it is loosely based on a comic book (even if it is a comic book by Neil Gaiman).

My main problem is not the devil or even the wife of God. It is that everyone seems convinced that God has a plan.

That would mean my disease was planned.

If God has a plan, he is a real #@&$!.

Hanging in there

At the end of my physical, my doctor said, well, you're hanging in there, which is really all you can say to someone who is generally healthy but does have a degenerative disease.

She was not cool with the medicine I am taking to slow my heart, so I need to revisit that with my cardiologist in a few weeks. She thinks it might play a role in me being out of breath.

She also said I might be breathing wrong or have some pulmonary problems. She didn't seem worried, though.

She also suggested I might have a parasite.

I said to her, I guess that's just how my body works. Not that I believe that. It is just better to say than, I guess I have kuru, even though I am not a cannibal from Papua New Guinea.

She replied: Maybe, unless you have a parasite.

Now I have that to worry about.

But I am in pretty good health, I know, except for the Friedreich's ataxia, the kuru, the parasite and the breathing problems.

Doing it yourself stinks

I needed a little personal help yesterday morning as I teleworked.

Mom was unavailable. Dad would not have been good at what I needed.

So I did what I needed myself.

It didn't make me feel good.

I didn't feel like I had accomplished something special. I was quite unhappy that I needed help to begin with. I'm hopeless.

What's stopping me?

I was off work all last week. I told a friend writing was on my list of things to do.

I wrote one blog and a few paragraphs of other stuff.

WHAT IS WRONG WITH ME?

All I did was sleep, watch TV and take walks with Fame. And granted that does sound like a good vacation, but I like to write. What's stopping me?

I have a physical this week. Maybe that will ease my discomfort.

This is a job for ...

I am off this week so went for a long walk. It was surprisingly warm in the sun, and the bike trail is all sun, so I was turning on various streets to find the shade. For Fame. I like the sun.

I even used the sidewalks, which was dumb. At one point, I had to edge around a tree that stuck out in the sidewalk. I made it OK, but noticed this truck had stopped and was watching me. I don't know if he was worried I might fall or he might hit me if I fell. Either way, sidewalks stink.

We made it to a local park, but there was a mom pulling a kid in a wagon, and we wouldn't both fit on my city's sidewalks, which, even when they don't have trees or utility poles blocking them, are narrow.

To give her room, I went onto a dirt path and it worked OK until it didn't and I got stuck.

I called Mom and asked her to call the fire department to help me out. She did.

Mom had earlier today texted me and my siblings to say a little procedure she had went fine, so I just told my siblings that I was waiting for the fire department. My little sister says, I'll come.

Next thing I know, Mom is calling saying she is at the park trying to find me. Then my sister came and freed me. Then three firefighters came.

I think the big takeaway, other than that I have an awesome family and I need to make a donation to the fire department, was Fame. She was fine, just lying down until she saw a passerby who she must have thought could help me. Then she started barking loudly and continuously, likely scaring any help off. I think she speaks when she thinks i am in trouble.

Back to (grad) school

I spent this afternoon talking to physical therapy grad students and doing things for their teacher to talk about. It was fun.

My PT is one of the teachers in the class, although she wasn't there. The students who help me are in the class, too, so I feel some allegiance to this school, and as I told the main teacher< the more people who know about Friedreich's ataxia the better for me.

I was there with a friend of the teacher's who had a spinal cord injury. We told our stories, so I gave a real abbreviated history. Then we transferred to mats, and we did stuff -- like roll onto our side or stomach -- or another teacher did stuff -- like moving us.

It was interesting to hear things, and they were pretty spot on. One student mentioned how fast my transfer to the mat was compared to the other guy's methodical pace. ("My chair is faster," the other guy replied, which we had talked about -- his goes 12 mph; mine tops out about 5.) The teacher then suggested that Matt's body is probably not very predictable, so I try to move fast and get back to solid ground. I agreed.

Fame, of course, was the star. She did "foot" and "plate" and a few gets. The only problem was she was showing off/playing when getting my phone. She activated my phone, opened the phone app and called one of my aunts. I hung up as fast as I could.

But they all liked us. And I didn't even have to do the Triple Lindy.

An ecstatic goof

I don't know if Fame senses problems and is so happy when a solution arrives or if she just takes any opportunity to goof off. Probably some of both.

I forgot my pass card to ride to my floor on the elevator yesterday, so as I was texting friends to come help, another co-worker came by. You would have thought Fame and I were dying and he was our lifeline. She was leaping around, licking our savior.

Needing work gloves

"Can you bring a pair of work gloves up and help me?" I called to ask Mom yesterday.

To her credit, all Mom said was, "Mercy," and she came right up.

Then, of course, I had to explain what on earth I was doing in the pricker bush at the end of the yard.

Fame ignores the nice balls I buy, and favors a ratty tennis ball my nephew found and brought home for the house dog.

Unfortunately, this ball is too mushy for the Canine Cannon, so I was using the Chuckit to toss it. It seemed to go too far -- Fame was all "I can't find it; woe is me -- so I was hunting for it and kind of got caught up in the pricker bush.

Mom freed me and pulled out all the pricker splinters we could see. One finger still hurts, so I am not sure if we got them all.

And the ball? I don't know if Fame was just messing with me: She grabbed it once she saw Mom.

Bed

I didn't have Fame sleep in her crate at night for long. There were too many things I needed her to do when I am in bed.

She picks up stuff I drop at night and gets my shoes every morning.

Sleeping next to me was a bonus.

It's a good thing, too, because she has decided she has a better spot to sleep.

Smarter then I

When did you start using your power chair primarily, my nephew asked last night.

I guessed about 2006. He said OK and left. I knew school had just started and planned to ask his mother why he was asking.

But half an hour later he walks in and says, "I thought you might want to read this," hands me a piece of paper and leaves.

It is a report on innovations and inventions, and it begins by saying, "Wheelchairs are one of the greatest inventions of all time ..." He then explains why -- because they enable opportunities people with disabilities would not otherwise have.

I like to hate my wheelchair, and it is annoying at times and not always super comfy. But my nephew is right.

My service dog

Twice recently, I have called Fame by the name of my first service dog Claren.

When it first happened -- I told Mom to grab me Claren's toothbrush -- Mom suggested it was because it was near t he anniversary of Claren's death. But it happened later, with a friend at work.

In my head, I have been calling Fame Claren since before we graduated.  I told one of the trainers that she must be working out well because I am calling her by her predecessor's name. The trainer said that was normal.

I don't get why it is happening now.

I'll tumble for ya, FA; I have no choice

I fell today.

It wasn't a particularly bad fall -- well, I wasn't hurt.

It wasn't a unique fall by any means. I had just used my urinal and before I could put my seatbelt back on, I fell forward. I tried to balance myself by putting my hand on the floor, but my wheelchair seat was raised so I couldn't really reach the floor. I did manage to keep my head from hitting anything, though, as I sprawled out on the bathroom floor. I also managed to tel "I'm OK" as soon as I heard someone in the other room leap up.

I remember similar falls and trying to balance with my hands. Once or twice, I have succeeded.

It is kind of depressing to find myself running out of falls I have never had before. Granted, there are still new ways I could tumble. But it means I have experienced so much because of Friedreich's ataxia.

Uh-oh, a prayer

When a big life change is coming up for anyone in the family, Mom spends a good bit of time putting together these wonderful blessings for everyone else to take part in. The latest was for my niece/goddaughter who was going away to college.

My part is to giggle uncomfortably.

I find the words so comforting at the same time I find them so hollow. Hence my discomfort.

One example: Blessed are you who weep and mourn, for you day you shall laugh.

How comforting to know that my pain isn't for naught. But I don't care about laughing when I am dead, and I don't see God interceding on earth to cheer me up.

And I know I am lucky and have many blessings. What about people who really need God's help?

I was busy

Its not like I have just been sitting around watching The Defenders on Netflix instead of blogging. Well, not just that. it's not like nothing has been happening either. A modest sampling:

• I almost killed my nephew twice today. First, I was rushing in because I had to go to the bathroom. I was going a bit fast -- I didn't really how fast (I was in P4) -- and banged the door open accidentally. Right before he opened it for me. Then later, I kicked a box I use for exercising off my bed. We were there alone, and he takes his job to keep an eye on me seriously. He came tearing into my room on hearing the box fall, worried I was hurt.
• I kneed Mom in the chin while she was helping me.
• I spent an afternoon in the ER after banging my head and having dizzy flashes. A minor concussion?
• I bloodied up the work restroom after falling on a rather sensitive part of the male anatomy. Nothing like asking the building manager to clean up blood.
• I visited Fame's puppy raisers (just so wont think it was a all bad).

Fame's return

Today was Fame's first day back at work. She had been acting fine but had a stomach bug. Other than everyone asking where's your dog, these were the things I missed when she was away:

I showed up at my desk, and the wrist rest for my keyboard tray was on the floor. I can pick it up; it is much easier for her to pick it up and hand it to me.

She didn't pick up the other stuff I dropped either. I left it on the floor.

She wasn't there to push the button to open the bathroom door. She also wasn't around to raise my foot plate. I cannot emphasize enough how big deal that is.

She didn't get me outside at lunch. I just worked.

She didn't carry my lunchbag when I left work

Most important: She didn't keep me company.

But today, the two-year anniversary of Claren's death (and the day Fame left for college), she did all those things.

A bit of a letdown

I spent Thursday at Children's Hospital of Philadelphia (or in the car more truthfully) for my annual neurology physical.  On Friday, I felt like crying.

It wasn't their fault. If anyone is at fault, it's me.

I didn't expect them to say: "Matt, we have this guaranteed cure we have just been waiting house. Are you ready to walk?"

That would have been awesome, for sure -- so would a pony.

It hit me when I was glancing at the followup instructions. They were mostly generic. Last year, I had these big plans to get a new chair, a lift, PT. The year before that was hearing aids, which I did last year, too.

The neurologist did tell me my heart isn't bad, so that was nice to hear. I'll survive, I imagine.

At least it wasn't the heart

I had an incident yesterday. I felt lightheaded and my fingertips were tingly. I didn't google those symptoms, so if they indicate imminent death, just don't tell me.

We called my cardiologist (the on-call one) who seemed unconcerned and was sure it wasn't heart-related. The latter might make him feel better, but I was imagining a conversation at my funeral: "He died of a totally treatable issue, but damned if the cardiologist wasn't right. The autopsy showed his heart was A-OK."

We decided I would have a cup of tea and see if it got better. (It did.) My sister also told me not to lie about my symptoms like I normally do because I don't want to be a bother.

I don't think I do that.

I do perhaps lie about how I feel, but it isn't because I don't want to be a bother. It is because I don't really believe they are legit. I think they are just in my mind, which they usually are.

The only real protein I had all day was from my PB&J at lunch, so I am attributing my incident to a protein deficiency, and I had a hard-boiled egg for breakfast.

I would have gotten away with it, too, is it weren't for those meddling kids

Funerals are always sad no matter who has died, but except for Gram's funeral 10-plus years ago, I don't cry at funerals ... until yesterday.

I blame my elder sister's kids. It was there grandfather who died, and seeing them wrecked me.

They are all old enough to know loss but young enough that they shouldn't have to deal with it.

I particularly blame my goddaughter who sang beautifully at the funeral. At Gram's funeral, she spent most of the Mass on the floor with Claren, my service dog at the time.

Fame spent this funeral alone, which is probably just as well. She doesn't handle sad people well. She hardly looked at me.

The afterparty was better. People laughing and hugging and talking, but the funeral was sad.

I hate sidewalks

I don't like sidewalks, but I have been using them recently to see whether my bias is legitimate. It totally is.

Here are just a few points:

• Sidewalks are ill-kept. It is totally OK for sidewalks to have big cracks and bumps.
• Their poor condition makes them quite uncomfortable for chairs. You ride just like the milkman -- whoopity whoopity whoopity. (I tried to find a link to explain this nursery rhyme, but apparently the milkman has been written out. sigh.)
• It becomes dangerous, not just uncomfortable if a chair gets caught on a bump.
• Curb cuts are kind of a joke. Many still require you to go up or down big bumps.
• Driveways are equally laughable. Good ones are fine, but the sides to plenty are equivalent to big hills on roller coasters.
• When I am walking the same way as the traffic, Fame is right next to thee street, so I have to have her switch sides, which is easy enough, but it puts me outside my comfort zone.

the end result: I am taking it to  the streets.

Bloody bloodsuckers

When people consider life in a chair, they probably think of big questions: how will I get from A to B, how will I use the toilet? Few people probably think of mosquito bites.

They're a big problem and have kept me up for hours the last few nights. Last night I woke my sister up to come put a wet washcloth on a bite on my left leg matching the one on my right leg.

Generally, what happens is they itch, then they set of my restless legs, then I take Advil, then I fight off tears because the Advil doesn't work. Cortisone doesn't either.

It is my luck that the one group of females that find me irresistible are mosquitoes.

Are you there, God? It's me, Matty

God is not my favorite. I know that my problem is related to genes, not deities, but part of me (sometimes a large part) can't get past the idea that God knew Friedreich's ataxia was in my genes  and didn't do anything to prevent it.

That is a somewhat simplistic sentence about me, but the upshot its I don't usually pray to God.

I talk to others in Heaven -- ask the saints, his mom, my relatives and friends for help and to talk to the big guy.

Today, though, I prayed to God. I told him I can't take anymore. He didn't answer, apparently confident I can take more.

Heartening, I guess

I went back to the cardiologist today to see if my new medicine was lowering my heart rate.

Something was.

Everything was totally normal.

The nurse practitioner suggested that the doctor was the cause of the elevated heart rate. She was good and funny. Of course, she might be right.

I am not scared of my cardiologist; I like him a lot. But I wonder if something set me off.

I also wonder how I am not going to worry about my heart from here on out.

External Affairs saves the day

When I first got outside at lunch, I thought, "Wow, is it hot."

Once I was out for a minute, I said to Fame, "I know you probably are too warm, but this is my kind of weather, especially in the shade."

I still went for a little walk. I knew Fame had to poop.

She did, and I bent over to get it, which I did. I had trouble get back up straight, though, and  someone forgot the meaning of brace -- a command we practice nightly where I put a hand on her back and push myself up. The upshot of that was some poop fell into a fold of my jeans, but it got worse.

I had to go in the grass to pick up after Fame, so to avoid getting stuck by backing out, I made a loop in the grass to return to the sidewalk. Well, in theory. In practice, I got stuck. I was in the shade, though.

I called a friend, but he is a bigwig and was downtown at a meeting. So I texted another friend. She said she'd come with help.

But my bigwig friend had called someone else -- friend 3 -- to say I was stuck.

As I was waiting for friend 2, friend 3 and two other friends came to help. Then friend 2 and friend 6 showed up,

Five people came outside to help me on a day that might be called warm-ish, and one worked the phones for me.

I work with good people.

Happy?

After she finished pretending to throw up, my sister started calling me a snake-oil salesman.

What on earth could I have done to set her off, you wonder.

I'm happy at work.

I was telling a friend I was unhappy, and she said I was usually the happiest person who comes through her doors.

I told my sister this, creating all manner of angst.

Everyone tells me that I should act happy. But it takes energy to turn that frown upside-down. I don't always have energy left when I get home.

Broken--hearted

This is what happens when you don't worry.

You have no preparation for the crap news that Friedreich's ataxia invariably brings.

I haven't worried about my heart for years -- even less since multiple doctors said I was unlikely to develop the heart problems associated with FA at this stage.

Unlikely maybe, but not impossible as I learned this morning.

The EKG they took showed my heart racing at 163 beats per minute. I noticed it going a little faster on the way in but attributed it to nervousness and didn't worry about it. Just the opposite actually, I laughingly thought to myself that I was in the right place for a crazy heartbeat.

Now I am on a beta blocker, starting at a low dose to try to keep it from lowering my already low blood pressure.

Sure, I'd still be on it if I had worried, but at least I'd be prepared or have expected this.

As it is, it is all I can do not to crawl into bed, curl into a ball and not get up till everything is better.

Choices

Looking back, I often make choices that lead to poor results. I don't think they are bad choices, though.

Consider what I have to work with.

Yes, I do fall sometimes when I transfer, but that's the price I pay for not staying in bed all day and for not calling for people to help me with every transfer.

Yes, my wheelchair sometimes get stuck in the grass, and that's because I am in places I shouldn't be. I get myself in those places because I don't want to call someone to do every little thing I need.

I guess what I am saying is my choices may look bad, but I am not sure I'd make a different choice if I could go back in time.

Alone

My sister suggested that I play hooky today and go with her and my nephew to National Harbor.

I declined. I like going to work, especially to the office.

While she likes to attribute this to my over-developed sense of duty, which I would just call doing my job, the reality has little to do with work. I go to the office because it is my regular opportunity to enjoy interaction with people I am not related to.

I got to the office today, logged on, and my bladder leaked.

I had to go home and change, and just teleworked the rest of the day.

Dependence Day

I am not feeling very Fourth of July-y.

I can do some things on my own, like read, write and watch TV. But so much of what I do has severe limits on it.

I can't do so much without a lot of help. And I am not talking about walking or things like that. I can't really go places unless I get a ride. I can't go on a vacation because I'd need someone to go with me and help me do everything, and I am not sure I can afford that.

Why can I not see past the can'ts?

It is not a perk

One of the first times I met one of my good friends, I was wearing a T-shirt with the logo of the guy in a wheelchair (the International Symbol of Access) with the words "In it for  the parking." She said she knew then that we'd be friends.

I am not in a chair for parking.  I can, however, see how some people might see the parking as a perk of being disabled. They're idiots, of course, but8 I can think of a few things some people probably view as an advantage to a wheelchair.

Not me, but some of my friends with dogs have  people say to them, "I  wish I could bring my dog to X, Y, Z." Well, we wish we could walk.

I call a special number for tickets to an event, which seems awesome, avoiding TicketMaster. Of course, if the 50 accessible seats sell out, I am screwed. And 50 wheelchair seats in a venue is generous.

Unless you have a child or are wearing a wedding dress or something, though, it is hard for me to figure out why people use wheelchair stalls. This does not seem like a perk. You're in there for a reason that doesn't involve spreading out.

But I keep running into such people: at Awesome Con and yesterday at work.

Well-played, bathroom, well-played

If a room can be one's arch-nemesis, mine is the work bathroom.

I don't fall in it as frequently as I do in the one at home (this morning, for instance), but the work bathroom finds innovative, almost ingenious, ways to screw with me.

I was headed out of the bathroom and heard a big clanging. I looked back and a floor-to-ceiing   corner piece -- one of those things that fit on corners and hide where the pieces of wall come together had fallen on my chair.

I am sure I didn't do it. I am guessing Fame's vest got caught on it, although how that brought it down is beyond me.

Like I said, my nemesis.

French-kissed

Mornings are just hard. I lie on my bed yo put on socks, then pants, then shoes. I then transfer to my chair and stand up again to pull up my pants.

On the best days -- when I am functioning like a well-oiled machine -- it is a cumbersome task. Then there was Friday.

Unlike Claren, who heard my alarm and only wanted to go out so she could eat, Fame hears my alarm  as a signal to leap onto my bed and "cuddle." I use quote marks because cuddle usually means lick me or push herself against me forcefully. Yes, she'd stop if asked, but I like it.

On Friday, I opened my eyes to see an adorable, if non-human, female face staring me in the face and a tongue sliding into my mouth. To be clear, that face belonged to Fame, it didn't belong  to Lady Sif, Gamora, Seven of Nine or other non-humans who have carte blanche to wake me up with a kiss.

After choking/laughing, I proceeded to get up and was still brushing my teeth when Dad came in to drive me to work.

Wild Kingdom

On a trip to Great Falls with my uncle and then-girlfriend, I walked right past a big black snake curled up on a tree stump. My uncle pointed it out. The incident is burned in my brain. My uncle's, too, it turn out because it was the first time he brought his now-wifeto meet his mother.

I am glad to report that in 35 years or so my wildlife eyesight has improved a bit.

So when Mom and I were walking up the road a block from my house the  other night, I was the one who spotted the deer in the front yard of the house grazing on whatever.

As usual, an Awesome experience

As far as Doctor Who companions go, Donna Noble has always been high on my list. She is so funny and comes across as full of joy.

She's even higher after yesterday's Awesome Con. She put an arm around me for the photo, And  when we came in, she chatted with me while rubbing my arm.

Even with her chattiness, the photo op is still kind of an assembly line, so the only bad part was that Fame got turned around and blocked by my niece (you can see Fame's tail between my niece and her friend).

But it was fun.

Fame did well for the most part. It was crazy crowded, and she was the best dog there. She has a tendency to eat everything, so if there is a scrap of paper on the floor, she'll eat it before I remember to keep her from it. She's weird, but a million times better than the alleged service dog who went batshit crazy at the sight of Fame. Her wheelchair-using owner had the dog in a headlock, another person was talking to the dog, and staff showed up.

Despite the crowds, people generally made way for me.

My niece seemed to have the most fun, but I did, too. I saw my nephew, the woman who helps run it, and Donna rubbed my arm.

He can it through the bathroom door

The new arms on my wheelchair need some work. They are too far forward, leaving a big gap between arm and wheelchair back.

But what a difference! I was zipping through doorways like nobody's business. Well, at least I didn't whack anything.

A teachable moment but not for Fame

I have decided after a year-plus of her carrying my lunch bag out of work that I want Fame to hit a button to open the door in the lobby. This is proving difficult.

Not with Fame, exactly. It's the helpful bystanders.

I can hit it fine, but I have to lean far to my left or drive so I am not really facing the doorway. An aside, this building is less than awesome with button placement. So if Fame does the pushing, I stay in the doorway, don't lean out of my chair, etc.

Easy-peasy, right?

Well, it's not a big square button, first of all. She pushes those easy.

It's one of those small rectangular buttons, maybe an inch by three inches. Fame rears up to push it, but she nudges the top or side. It needs a good push in the middle of the button.

No problem. I lean over and put a finger on the button to give her a target. At that point, a guard or someone comes over and pushes the button.

I say I am teaching her to push it, but the door is open. It seems silly to let it close just as a teachable moment for the humans.

A little break

On Thursday I had my last appointment with my awesome physical therapist for a while.

I'll miss it, but now that it is warmer I am better able to exercise on my own  -- or with the PT student who works with me. I have a new chair, lift, exercises and good ideas on transfers. And I save some money and benefits for when I need them.

I'll survive. I do have carte blanche to email her. She'll  no doubt be bored. I mean I won't be around to ask silly questions or for her to make fun of ...

Speaking of which: A while back I was complaining of some shoulder pain most noticeable while drinking. I meant drinking anything. She says, We're not doing PT so you can go out drinking. I respond that apart from champagne, I can recall just  about all alcohol I have had. To which she answers, well, you might want to live a little, Matt.

I'll miss her.

Flying poop

There is no use trying to figure out Fame's poop schedule. Usually, she'll poop in the morning and the evening. But every so often, she'll go at lunch, even on a day like today when I hardly walked her because it was drizzling.

I picked it up and headed to the trashcan with the poop bag in my left hand, my leash arm. On our way, Fame got a whiff of something in some tall grass and jerked over to get a better sniff. This cause the poop and leash to fall.

I called her three times, so she could get the leash for me, but she decided to go deaf. So I bent down, got the leash and poop, and called her agin. She saw I had the leash, so she half-turned but was too intent on whatever to really pay attention.

As we are trained, I gave her a leash correction, pulling the leash quickly and hard, then letting it loose while saying "Don't."

It worked. She came and  sat right next to me. Unfortunately, the poop flew out of my hand about 15 feet into some more tall grass. I had to text a friend to come get it.

And since then,  I have been unsuccessfully trying to stifle giggles at the idea of someone walking behind me during this and getting a face-full of bagged poop.

Matty McDreamy

I did nothing unusual last night, but from my remembered dreams, you'd think someone switched my restless legs medicine with lots of mind-altering drugs.

First, Matty takes on

I seemed to be part of a group of black-ops guys that featured me and a bunch of Hollywood archetypes. It was me and the tough guy, the joker, the heavyset guy, the minority, etc. We all boarded a bus, and a bad guy sniper immediately shot the bus driver in the head. The bus crashed, and there was a running gun battle through the streets with my group and the baddies until we reached a neighborhood where the baddies lived that had a big park.

At this point, the good guys seemed to lose our guns. The first good guy to buy it was the joker, who was also the minority, kind of an Aziz Ansari type. We all watched as a bad guy taunted him with what appeared to be a game -- a brightly colored ball on a big loop -- and yelled, "What are you going to do now?" Another baddie had a gun on him. In answer, Aziz grabbed a similar game piece and ran at the bad guy. The other baddie there cut him down.

Then they were after me. I got shot a few times but like any hero, just shook it off and kept running. The horizon (I told you it was a big park) really screwed me. I kept seeing the ground dip in front of me, and I thought, "Thank goodness, a hill. They won't be able to shoot at me." But then I'd get to "the hill," and I'd realize it was just the horizon.

This went on for a while until I escaped into one of the baddies houses. I wandered around for a bit, then hid on a porch. It opened onto a green that the baddies were walking down looking for us good guys. I couldn't squeeze totally out of sight, and they had me.

But they didn't kill me. I was the last good guy alive, and they were keeping me hostage for some reason. They even brought Mom and Dad and one of my brothers to have dinner. Really! There was a Washington Post with headlines about the incident, but apparently they missed the park and running gun battle through the streets because the headline was something like, "One killed and one dead in bus attack." The story had only the bus driver and one bad guy, who was actually a double agent.

After dinner, they let us go home to get a change of clothes. A few baddies accompanied us in their VW bus. We encountered a cop who recommended we take another way home, so Dad helped the driver plan a new route. We ditched the van at one point and I think the baddies.

That is all I remember of that one. So after action, a little rom-com.

Pranks turn to love

I was watching a movie preview. It seemed to be a mash-up of many things, so here is a recap. The first part reminded me of  The Simpsons episode when Homer is Mr. Burns' "prank monkey." An older Kevin Kline is the prank monkey, getting his orders by cellphone. His target is Felicity Smoak, who I know is probably young enough to be  Kevin's granddaughter. And I know Felicity is a character, not an actress, but the actress is not famous yet. The first prank involved getting her soaking wet, maybe by bumping her into a fountain. Next, he had to ask her out. Love then blossomed.

In the next chapter of our story, I seemed to have replaced Kevin. Love has blossomed but with unexpected occurrences with a number of influences:

• Like  iZombie when Liz assumes the characteristics of the person whose brain she just ate, Felicity seems two people. For instance, she is now a health food nut who includes beef in her meals. 
• She likes board games. 
• There is a beach scene when someone who I think is my son wields a harpoon gun to bring down a kite. This seemed to be a game.
• Sort of like Speed, Felicity escapes out of a bus using the escape hatch in the floor of the bus. I realize Keanu didn't escape out of the hatch but who knew it was there other than Speed folks. I seemed to be encouraging her to use it so maybe it was the same movie as the action one.

I am certain there was more, but all I care about is I was married to Felicity Smoak! 

Bad Leroy's bad daughter

I was for some reason thinking of Peaches today.

Not the fruit, one of my uncles dogs.

Actually,  I first thought of her brother Scooter. (Her father was Bad Leroy.)

Peaches was a bit of an acquired taste. She hated UPS trucks and minorities, although the only person I saw her nip at (sort of) was a Caucasian friend who thought he'd play "Let's Run Past Peaches." He lost.

She loved my uncle and my brother. I was a little frightened of her, but she never harassed me. And she always put up with my pats and didn't mind when I put her leash on before I fed her (so I didn't have to put my hand near her mouth when she was eating).

She was the first dog I got to know.

No Party Doll for Matty

Buddy Knox, really Sha Na Na, gave me the dream of having a party doll, but I am afraid that hearing aids will forever prevent me from achieving that goal.

I have a habit (bad if you believe my sophomore biology teacher who said hair was the dirtiest part of the body) of running my fingers through my hair. That's just one of the things your party doll is supposed to do.

But I always knock my hearing aids out from behind my ears and have to scurry off for help.

Maybe I just need to stop running my fingers through my own hair.

Riding

The near-constant showers and coolness did mean I could not go for a bike ride, so I guess I should be OK with it. I'm not, though.

It's not that I didn't want to go for a ride. it's just so much more than popping on my trike and riding.

• It takes at least a half-hour to just get me on and of the trike, even with the lift. 
• It also takes two people.
• I have to make doubly sure my bladder is totally empty to avoid ... well, you know. Maybe I should go riding in the rain.
• I can't take Fame because I can't pick up anything.

It is also a holiday that wears on me, so maybe it is no surprise all I want to do is nap.

Graying

Every time I see a gray hair, I grow sad. Well, mine. I like seeing my oldest sister's gray head.

It's not that I think I don't look good in gray. I know I rock any look.

It's this: I greatly suspect I won't live to 90, so at 45, I have lived half my life. I don't care about that exactly. But I feel like most of my life has been lived with the equivalent of one hand tied behind my back.

Not knowing my clumsiness was a disability and wouldn't get better stole some years. A diagnosis but no treatment took more years.  And various issues related to FA or wheelchair life robbed me of a few more.

I use such words as stole, took and robbed, but no matter how you look at it, I am to blame. If I hadn't been worried or afraid, I doubt my gray would bother me.

Doors bad

I got a bit tangled up with Fame today, so we were slow going through the automatic door on the bathroom, and when I did make it through, the door closed on me.

It hit my chair in just the wrong spot and snapped a screw that holds the joystick on. So lucky!

I somehow made it back to my desk, then out to the van, into and out of the van and into the house with the joystick in my lap. Friends helped at work; Mom at home.

Now it is held on by duct tape, and I am waiting for a repair person tomorrow.

No 911

The police did not come last night. This was good, just not entirely expected.

As I was settling in for some iZombie on Netflix, I tried to turn on my microphone via my watch. It could not connect, so I restarted my watch. Or tried to.

Underneath the slider button to turn off the watch is a  similar slider for 911. Guess which I watched myself slide?

Even worse, there was no way to cancel the call, although that might be on purpose. And even if you do hang up on 911, they call you back.  I learned that the first time  I called 911 by mistake.

Anyway, the operator came on and began asking for my address. I tried to tell her I didn't mean to call her, but she didn't understand. Finally, Mom explained, which the operator said was OK but I thought she might send the police to check.

What a half-day it was

My sister, I am sure, would say it is my own fault for going to work on a day I telework. It is just after four hours of not being able to connect, I had things to do.

Mistake.

Shortly after I got in, I went to the bathroom. I knocked my water bottle onto the floor. Luckily. it missed the toilet but it rolled around under the toilet. Gross. I'm not drinking out of that, I thought, but I'll just drink my juice then use that bottle for water. (Hint: It doesn't work.)

Next time I went to the bathroom, I removed my lanyard carefully because I know my hearing aids can easily get stuck in it. Not careful enough, apparently.

My right hearing aid came out from behind my ear. I was trying to fix it when it came out and fell in my sleeve. I lowered my arm and it tumbled out, bounced under the stall wall and landed under the foot of the stall's user. I didn't have a lot of time to waste -- what if he lowered his foot -- so I said, "I dropped my hearing aid under your foot," reached into the Forbidden Zone and grabbed it.

I then put it on my wheelchair cushion. Unfortunately, that is also where my lanyard was. I hooked my lanyard with a finger as I pulled my hand away from the cushion, and my hearing aid went somewhere.

It wasn't under me. I didn't see it in the next stall and was not about to ask the same occupant. (I wouldn't have asked another occupant either.) I didn't think it was in the toilet. I decided it must have gotten in my clothes, but I didn't see it.

I got back in my chair, started backing up, and just as I asked St. Anthony to "please come around," it appeared from under my chair. I can't believe I didn't run it over.

Later, in the restroom, I was rinsing out my juice bottle, and I managed to stick the faucet handle inside the bottle. I was trying to decide if it was too germaphobic to worry about drinking out of, when I dropped the top on the floor. I gave up then.

But the fates weren't done with Matty. I decided to eat  a cheese stick. I had a bite, then dropped the rest. Fame got an unexpected treat.

That also ignores the two mysterious cuts on my hand I only noticed because of blood on my jeans, phone feedback and a bang on the head.

Next time, I am calling in sick.

I love the CW

That's kind of embarrassing to admit, I realize, when you are in your 46th year but whatever.

I watch it more than any other network, and while I watch the other networks mostly on Hulu, I watch CW shows live.

That was more out of necessity than anything else.

The CW app has the shows, but it has well-documented issues with captioning.

I learned of the problems when I  was trying to catch up on Arrow at the beginning of the season. You had to turn off captions before the ad break, then turn it back on once the ads were over. Otherwise, the show froze.

It got too hard to watch shows so I watched them live, except Arrow, which I just gave up on, because I missed the beginning episodes.

Surely, I figured, they'd fix it soon.

But they never did.

Finally, when I missed a Riverdale episode, I took to the web to find out what was up. There were plenty of negative reviews on the Amazon page for the app, but it was far from clear that the CW knew about it. So I left some feedback on the network site.

One week later, they issued an update that fixed the captioning.  YAY

The real Captain Awesome

I try to bitter, but some days it is so dang hard.

The other day I got to work and pushed the button for the elevator. The door opened, and inside was a woman I see frequently in the mornings. She is not a co-worker; she just shares our building.

We don't know each other, except what floors the other works on. She is that woman to me. To her, I am something similar, or maybe Captain Awesome.

The elevator started to close before I reached it, so she rushed off the back wall and held it open.

Then she said, 2, right? Two is my floor. She is 5.

She knew I needed to unlock the 2 button with my ID, so I said I'll jut ride up with you and lowered my head as I struggled to get my badge out of the holder.

When I looked up at 5, she was waiting with her hand out of my ID. I handed it to her, she unlocked and pushed 2, wished me a good day and got off the elevator.

Close call

I am sure those little metal walls on the edges of a sidewalk have names, but whatever. I am not a fan.

I went for a walk at lunch, and because I wasn't paying attention, drove of the sidewalk. I couldn't get back on the sidewalk  because of one of those walls.

With my speed up, I got back on the sidewalk, but then lurched all the way across the sidewalk and stopped with one wheel off the curb.

Luckily, a security guard saw me and helped pull me back safely.

I procrastinate

My desk at work gets littered with plastic Gatorade bottles because the recycling is not real close and I don't want  to throw them away. So I let them pile up till I have to do something. Then I recycle.

I find myself doing that more and more: putting something off because it isn't easy.

But it doesn't get easier, or if it does, it is only because I shift the hardship to someone else.

Up with Matty

Mom, Dad and I went to NIH to talk to a class of future genetics counselors last night. It went pretty well. Mom was worried I'd be too gloomy, I think, because what I wanted to tell them was that the FA diagnosis did not help me at all.

Here is what I said (more or less. I didn't read it so it's not exact):

Mom and Don (the teacher) were talking about the advances and how you no longer have to make diagnoses wholly on symptoms. I kind of have a different view. I learned 20 years ago that I have FA, and despite the hard work by doctors since then, if anything the diagnosis hasn't helped me. I still have a degenerative disease that continues to degenerate. I know at least vaguely what the future of disease is. I can no longer say, “Maybe it won't get worse,” because FA does get worse. 

One doctor — not from NIH — told me shortly after the diagnosis that they’d have a treatment within 5 years. Instead, I am trying to figure out how long I can work, how unfair it is to make my sister care for me when my parents are gone. 

But then again maybe they will cure it tomorrow.

I also told them they need to make sure the patients have a support network because no matter how strong and how hard it is to accept help, no one can do this alone.

I could have been much more gloomy.

I don't deserve this either

Shortly after my awesome physical therapist had come over and fixed my wheelchair the day after my accident a few weeks ago, Mom asked me what I had done to surround myself with such good people.

I don't know.

It isn't just my PT. Friends, and sometimes strangers, pick me up when I fall in the bathroom at work. When I get stuck or can't reach Fame's poop, I have a phone full of contacts who will help.

I have my friends who put my hearing aids back.

It was no different at other jobs either. People help me with Claren or pulled up my pants or gave me the key to the building so I could use the elevator.

And of course, there's my family.

It's not me.

I don't mean I am a jerk, but it is them, not me.

Bitter? Happy?

Mom assures me that I would be happier if I weren't bitter. She says others would, too.

I can't say on others, though I will say I don't think I exude bitterness, certainly not in public. I may give into funks more frequently when I am home, but for the most part when home, I am alone in my room, reading, writing, watching TV or napping.

I am unsure if I would be happier.

I do not expect God to come a-knockin' and say: "I am so sorry for the unfairness present in this world I created. I totally could have done better. And all that stuff about 'ask and it shall be given,' that was just stupid. Surely I am not going to answer every prayer as people want."

However, I do not feel like letting God off the hook either, even if it doesn't matter to him.

I am not alone in hating unfairness. I am not anywhere near the most put-upon person I know. But God has to know that I am not happy with him. And bitterness is a way to show him.

Bitter?

I was reading the remembrances of a woman who was friends with a guy I knew in college. From what I could tell he had cancer, but it didn't just kill him. It took his eyesight and other things.

The woman said that he did not complain about the unfairness of it all, just sought to deal with it.

What, I wondered, is that like?

I'm not sure that I'd want to not be bitter. I mean, I'm not mad about it all day, every day. And I don't talk about fairness to friends a lot, but I suspect most of my friends know.

Uh ... nevermind

I fell today -- nothing major -- but I am surprisingly disappointed.

I hadn't said anything, but I hadn't fallen in a while, like maybe 10 days.  (I thought it was longer when I started to write this; 10 days is not too impressive.)

What Have I Done to Deserve This?

Once during my career as a Pet Shop Boy (really, I was a boy who worked in a local pet shop), I lost the key to the cash register. I felt sick, not just because it was on an awesome Fender Stratocaster keychain. I know people lose things, but I had betrayed a trust.

I told my boss, who must have seen how bad I felt. His response: He put one arm around my neck, said "OK" and pretended to punch me in the stomach with the other arm.

He then told me it was OK, blah, blah, blah.

Now, close to 30 years later, I feel the same way for losing a remote control to a door and my key card. Worse, their lose was a result of my bad wheelchair driving and the "Unsafe at any speed" issue I had recently pointed out.

I was trying to find the elevator that had binged, so I was driving around with my eyes on the elevator lights when BAM. I hit a wall.

I suspect my stuff fell off my lap then, but I did not notice and it wasn't there when I returned. But I re-walked my trip twice and didn't find it.

I hate being disabled.

The title is a real Pet Shop Boys' song.

Questions

As any Catholic school veteran, Holy Week makes me think. It does not make me think good things, though.

How could God allow that to happen to his son?

What hope to any of us have in light of that? Maybe we'll be fine when we die, but we need help now.

Why are those of us who suffer told that one day (in some vague distant future) we'll be happy?

Why do we have to rely on other people, not an all-powerful God who supposedly loves us enough to  sacrifice his own son, which leads back to the first question?

Unsafe at any speed

I realized today that if I go slow enough to maneuver through doors and elevators, the doors and elevators close on me. But if I drive fast enough to get through, I crash into the doorframe.

Other  than mandating super wide doors, I am not sure of my options.

The Spirit lives on

It's a sign of something, not sure what, but I was sure I  wrote  about the Spirit story "10 minutes," which is tagged "What's 10 minutes in a man's life?" In the story, a guy's bad choices over 10 minutes kill him.  It's pretty powerful, especially because the Spirit is only in a few panels at the end. The rest is just the guy's life crumbling. The answer to the tag line then is "a lot."

I was thinking of a sequel: "What's one inch in a doorway's width?

In it, someone puts a trashcan so it sticks into a doorway very slightly. But it winds up rendering the way impassable for someone in a wheelchair.

Nothing normal

Every so often, I pretend my body is normal. It never ends well.

On Monday I woke up at 6:05 a.m. and went to the bathroom. Then I closed my eyes till my alarm went off 15 minutes later, got dressed, got up, took Fame out  and fed her, and then started to brush my teeth.

As I started, I got a tiny indication that my bladder might need further emptying. "Surely," I said to myself, "that can't be. And why are you calling yourself Shirley?"

So I kept up the tooth brushing ... until the tiny indication became a surging river at which point it was all over. My sister was called. Things were changed. Unfortunately, my body was not one of those things.

No rest for the weary

For the past year or so, I have made my sister come help me whenever I have to get up in the middle of the night.

Now, some of it has been legit -- like when I had a concussion or dizzy spells. But  honestly, I am not sure I am not just being lazy. I mean 99% of the time, I am fine. OK, maybe like 86%, but still a solid majority.

I tell myself better to get help and not need it than the other way around, but I worry I am taking the easy way out and disturbing my sister, who has better things to do.

Fame needs her motivation

I taught Fame a new skill, and I am pretty tickled.

She pushes my wheelchair footplate out of the way when I say "foot."

It is really handy. I am also proud (of her; I didn't do anything) because pushing vertically is not something she was trained to do.

Because of the newness, I encourage her a lot.

The problem is I use this command most frequently in the bathroom, so today I was cheering her on and heralding her success. Then I noticed someone in the next stall.

I can't breathe

Blowing  out the candles on my birthday cake has been kind of a joke for years. I have no  aim with say breath.

My PT was not laughing when I mentioned this to her. She had just told me she "didn't love" how my ribcage flairs out at the bottom. This is how she says something needs fixing.

She was telling me that I am not breathing properly when I told her about the candles.

She got a piece of paper, and told me to blow into it and make it move.

I couldn't do it. Awesome. Another problem.

Needless to say, I am working on my breathing.

I hate cold, part bajillion

I telework Tuesday and Thursday, so I need to bring my computer home most days. I put the bag strap around my neck and the bag on my lap.

When I have to wear my big coat, I can't see my feet, so I don't know if they fall off my footplate. Like on Wednesday.

My left foot fell off as I exited the elevator in the morning. It really got wedged in between the footplate and the wheel, and I couldn't free it.

I eventually had to ask a stranger on the elevator to lift my foot up. She did, but grrr.

Dizzy no more

My plan for today was to start calling amusement parks and find a tilt-a-whirl. After yesterday's repositioning effort at my physical therapist's to fix my dizziness, I figured a tilt-a-whirl would do about the same.

But I woke up today not dizzy! Man, those PTs are miracle workers. (I say those because my normal PT was not even available, but her co-workers helped.)

It took two of the co-workers. First, I laid down on a table with my head off the end. Then, one PT held my head and another rotated my body. They did this twice.

I may have been a wee bit skeptical at first. Immediately afterward, I was a little off. But one of the PTs said my eyes were less jumpy the second time, and I didn't get as dizzy on the second rotation.

The only problem is I kind of wanted to find a tilt-a-whirl and have my shirt get caught.      

I don't have a concussion!

That's the good news.

The dizziness I am experiencing, though, is worse than when I was concussed.

I went to the doctor yesterday, and the PA diagnosed an inner ear problem. He had me take Sudafed and Flonase, and said it'll clear up in a few days or a few weeks.

Needless to say I am teleworking till the spells, when I change positions or move my head, are gone.

The best to explain the symptoms is to recall going to Redskins game at RFK. We went in a bus, and all the buses parked in a row next to one another. After the game, sometimes the bus next to us left first, and if you were looking out the window, it could get ugly. You knew you weren't moving, but out the window, things were moving. It was very disconcerting. And that is how I feel when I lie down: I know things aren't moving, but they feel like it.

And I didn't even get to watch my once-favorite team beat up on some losers, like the Giants.

TV doesn't hurt

I had been writing a post in my head for most of the day, then I fell this evening and I no longer wanted to write that post, or anything really.

I need spring and its warmth, but it's more than that.

I feel like I am getting worse balance-wise. I am fairly sure I am not really, or at least not unexpectedly worse.

But something is more wrong than usual. Who knows? Maybe I am just looking for an excuse to watch TV.

My toys

My new toy may be paying off.

It's a microphone that sends the sounds it picks up to my hearing aids. I use it to watch TV mostly. Meetings have been so-so. But last night I went to dinner at a crazy busy restaurant. My two friends kindly passed the microphone back and forth, and I actually kept up.

It wasn't perfect. But I followed 85 percent of the conversation. No batarang but I'll take it.

No problem

My work sister has grown so blasé about putting in my hearing aids or putting them back in place that yesterday she didn't even bother getting off the phone when she saw the hearing aid hanging at an odd angle. She just motioned me over, fixed it and kept talking.

I reckon that I am pretty lucky.

Seeing stars

As I recently pointed out, there is nothing good about FA. But I just thought of something: Because of    FA, I now understand why Wile E. Coyote sees stars when he falls off cliffs or gets hit with anvils. (Note to Mom: Nothing happened.)

Before the FA set in, I figured you saw stars.

It wasn't until FA, when I started falling and slamming my head into tables, that I knew what the stars look like. They also don't circle your head,  at least mine don't. Mine just float in front of my face.

Thanks FA.
.

This is why I was worried about my sister and PT meeting

I cough -- a lot. Air and liquid down the wrong pipe. Anything.

My point is I rarely stop what I am doing because of a cough. If I did, I'd get nothing done.  If I did, I'd get nothing done.

I know most people disagree.

My swimming teacher makes me take an extra cough after I swallow water to make sure my pipes are clear.

Yesterday at physical therapy, I was reclining in my wheelchair when I coughed moderately, nothing awful. So I continued reclining.

My PT was sitting next to me and says, "It's probably not a good idea to recline when you are coughing."

This made me laugh, which caused me to cough all the more, because as I told her, it sounded just like something my sister would say. That's why I was leery of their meeting a while back.

I did sort of lie, though. My sister would say, "It's probably not a good idea to recline when you are choking."

Boys Night In

Mom and Dad are away at a retreat. My sister and niece are at a hockey tournament in Buffalo. This leaves my brother-in-law and nephew and me.

I needed to shower last night, but my brother-in-law had to coach a hockey game until 10.

Up to the PCA (personal care assistant) plate steps my 11-year-old nephew.

I made it to bed successfully so I got to say he hit a home run. Any issues -- like me not asking him to take my shoes off -- are on me.

I survived. And he only made one comment about my towel slipping off.

Survival

A little over a year ago, while up in New York getting Fame, I fell. It was the beginning of a several months-long battle with a concussion. 

Trying for a repeat over the weekend,  I fell in Mom and Dad's house and whacked my forehead on a grab-bar.

My head hurt, my neck hurt, I hurt.  But no dizziness! 

Not built for speed

I have touched on this before, I believe, but twice this week  I have been reminded how frustrating it is to be late but unable to do anything.

Both times involved me putting on boxer in the morning. The first time I spent five minutes putting them on because several times I put the wrong leg through the leg hole i started with. The second time was more boring, but the result was the same: I was late.

When I am late, there is nothing I can do. I can't kick it up a notch -- the body doesn't do that. I can't skip  something -- I am already at bare-bones, must-do tasks, like brushing teeth.

My option is lateness, which is frustrating.

Nothing good

My nephew would say the parking, but my physical therapist was quite surprised to hear me say "a few things are made better by Friedreich's ataxia."

Like what, she asked.

I had to explain that what I said was "few things are made better by Friedreich's ataxia," meaning nothing is. It totally sucks, to be clear.

We did have a nice little laugh.

Lighting up Falls Church like a flame

Today is my first anniversary with Fame.

We have not figured out how to fly yet, but she picks up an awful lot pretty easily. The limit really seems to be my imagination.

Lately, I taught her to put down the footplate on my chair. I am still pretty tickled by the ease with which she picked it up and how helpful it is to me.

I haven't figured out how to teach her to put the footplate up. See? Imagination.

No  matter when, she is always up for any command I give (except  speak. She does that if I have treats or if she thinks I really needs it.)

In a year with me, I don't think I have seen her not wag her tail when I ask something of her.

These lines from the song struck me but I am not sure who is who: I got more in me, and you can set it free

My dreams are made of this

I have been sleeping poorly the past week. I called in sick Tuesday because I was up most off the night. My legs weren't bad; I wasn't sick; I just couldn't sleep soundly.

To illustrate my unsound sleep, my plan last night was to detail my insane dream of Tuesday night.

I was not disabled and seemed to live in a penthouse with lots of windows and skylights. It seemed to be in like North Korea or some tight regime where you needed your ID everywhere.  Maybe I have just been watching too much dystopian TV, and it was America taken over by  aliens.

I worked as a journalist, and although you needed an ID to get in, they let my oldest sister in when I told them she was with me. She seemed to know people there, and was telling which of the strange foods in the cafeteria to order.

The regime also had a thing for baseball, and apparently had scoped out my penthouse because I  was told they liked some of my baseball stuff.

And there was a woman with eyes like Lady Gaga at the Super Bowl. It turned out she was wearing glasses that gave her the glitter look. But then she took off the glasses and the glitter was still there.

Anyway, my plan was to detail all this last night.

Instead, as I sat down to dinner, I coughed and sent my dinner into my lap. Then later at dinner, I coughed, slamming my head into the table.

Thus chastened of any such work, I watched TV.

The tuck rule forgotten

Last night as I was going to bed, I had to use the toilet

I got my pants down but not a requisite body part. As such, I needed to change my pants before  I went to bed. No problem. I wouldn't even need to call anybody. I just got back in my chair with my pants down and grabbed some boxers to put on when I got in bed.

Before I got in bed, I took off my sweatshirt.

Unfortunately, my T-shirt came off, too, and I didn't feel like putting it back on.

Then when I got in bed and took my pants off, I knocked the clean boxers off.

So I went to bed without a stitch of clothes on.

Lights on

My latest concession to Friedreich's ataxia is the bathroom light:  I am leaving it on when I go to bed.'

I just cannot reach my glasses, the light switch and the urinal when I need them. At least not as fast as   needed.

I hate concessions.

My eldest sister once told me everyone makes concessions as they age. This is true. But I have already conceded so much. I feel like I am a concession or two away from lying in bed 24 hours a day, which sounds appealing right now but is probably not that cool.

Fallen again

OK, instead of an old lady in the shower; think of Matty in bed.

Last night, I put my Uggs right by the bed, but apparently I misjudged.

I went to grab them this morning, and I felt myself roll out of bed. Well, the top part of me anyway. My legs got all tangled up with my chair and stayed on the bed.

The problem was I was using my arms to hold my top part up, so I couldn't access Siri on my watch. I actually got Fame to bark -- I think she knows when I am in trouble. But that didn't wake anyone. Not  real surprising because we have soundproofing.

I just kept squirming and eventually supported my top with my head, activated Siri and called my sister, who of course helped me up.

I think the old lady's gadget may be a better answer.