Skydiving is back on the table

Eight years ago, I decided not to go skydiving: I didn't mind the prospect of dying exactly, but I didn't want to injure myself and become more of a burden.

But then two things happened:

1. George H.W. Bush died, and newspapers ran the photo of him skydiving as he did when he turned 80, 85 and 90. I figured if he could do it, I could. Then last week, 
2. My head-shrinker asked what I had planned for 2019. I got nothing planned. So I blurted out skydiving.  She thought it was a great idea. Her initial response was, oh yeah, where?

I then had to explain my eight-year-old reasoning. She shrugged it off. You could break your leg today, she said. Of course, she's right there.

Then she told me not to engage in "What ifs."

I responded that I love "What ifs." It was always a favorite comic book.

But now I am trying to ignore "What if" and considering skydiving again.

Be careful what you listen to

When my sister was in college, she liked a band called Eddie from Ohio. (Maybe she still does.)

And when my disability became prominent, she used to sing lines from the above at me:

And should your soul grow weary
And the strength leave your bones
Oh my brother
I will carry you home

I wonder if she knew how literally she was being?

Actually, she doesn't do carrying but lots of lifting, picking me up, walking downstairs n the middle of the night ...

But this -- Friedreich's ataxia -- is not her fight, not exactly anyway. She has better things to do with her life than take care of her older brother (even one who is super awesome).

This is, I know, what family does.

But how is it family-like to be a burden? (And I am not considering offing myself. Before I bring up things like this with my head-shrinker, I tell her that, too.)

So I try not to be. But, with my limited abilities there is not much to do.

And, honestly, what are my options if offing myself is out, which it totally is?

• Get cured. But there isn't a cure.
• Win the lottery. I don't play at the moment but recently started looking into it. (You can set it all up online!)
• Become Natalie Portman's arm candy and kept man?

One and three are my choices. I am not telling which is my first pick.

Don't forget your pills

I forgot to take my pills Sunday night. It was bad.

I didn't miss the aspirin or vitamin, but take it from me: Don't miss a dose of antidepressants or one of anticonvulsants (for my restless legs).

The lack of anticonvulsants hit first. My legs surprisingly were calm, but my whole body felt tingly and on edge. An hour after going to bed, I tried to take an Advil to relax, not yet aware I forgot my pills.

Instead, I knocked the water bottle off my table, and I am not cool enough to swallow pills without water. I tried to will myself to sleep. but I wound up calling my sister to retrieve my water. (Fame couldn't, because I didn't know where to direct her to go to get it.)

Then I drifted for the rest of the night before having to call my sister again at 5.

After she left, I realized I needed my pills. It was kind of too late, but I took the antidepressant. Shortly after, the lack of that antidepressant hit.

I wound up just going back to bed and sleeping for four hours. I got up, had a little breakfast, took Fame for a walk, then when to bed for another four hours and just lounged around for a few hours after that.

Ugh.

Old, new, borrowed and blue awesomeness

The first thing you’ll notice about the Nativity is that the Big Three are not in a stable but on the beds of two big rigs (apart from the cool-as-all-get-out Lady Thor statue, but we’ll get there in a moment).

Mom was cleaning out the car drawer, so she brought things over for me to put on eBay. The metal trucks and some of the cars are from the ‘60s. Sadly, they weren’t worth that much, but they grew on me. I decided to just keep them. Also, they’re made by Tootsie Toys, and the name alone makes them worth keeping. Finally, forget the donkey, the family is riding in style to Egypt, Nazareth or wherever the family members want to go. I wish I could have learned to drive in a purple LeMans racer instead of a two-tone Buick Skylark.

The Stormtrooper can run interference as they travel.

Superman will take care of any threats along the way, but honestly he is there as the blue. He is sometimes referred to as The Big Blue Boy Scout.

There is really very little good about the next guy, a Son of the Harpy (as opposed to Stormtroopers). Even by Game of Thrones’ standards, these dudes are evil. This one, though, whose name is Fred, is repentant. He saw the star in the East, left Westros and came to pay respects to the Messiah. He did bring his knife but only because he heard there might be trouble from some joker named Herod.

The little angel band is on hand, but not in the skies as mistakenly reported. It gives the birth a jazzy feel. They are also borrowed. My niece probably has a Deadpool who would fit right in, but she wasn’t home.

Santa is there, too, as always.

Which leaves the peerless Lady Thor, my latest purchase.

Daredevil is my favorite superhero, but I may be in love with Lady This. Not because she is beautiful.

The prophet Isaiah talks about the Suffering Servant. He could be referring to Lady Thor (well, except for the fact that she is unfortunately a comic book character).

Lady Thor’s human alter ego has cancer. When she grasps Mjolnir and becomes Thor, the transformation purges all poisons from her body. Poisons like the radiation treating her cancer. So with each transformation back to her human form, she becomes sicker. But she still transforms because “the world needs a Thor.” She is so cool!

Merry Christmas.

Here are the ones from 2007,  2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016 and 2017. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Disabled, not out of shape

I am certain that the student teacher of my freshman gym class did not mean to hurt me, and I am equally she sure that she would be horrified to learn she plays a role in my nightmares.

But for me, her comment sort of represents high school, a miserable time when even nice people were stymied by how to deal with me and my just-appearing Friedreich's ataxia.

Struggling off the outside track one morning, I was the only one left besides her and the Coach, as my gym teacher was called.

She looked at me, "Out of shape, Coach?" she asked. In my mind, I can still see where she was and what she looked like. He agreed with her and said her job was to get me in shape.

Unsurprisingly, she failed.

I am pretty sure Charles Atlas couldn't have gotten me in better shape because, you know, I was just starting down a road that would leave me in a chair.

Mom regrets not noticing the FA in me and m brother sooner, not that there was anything to do about it.

I guess if we knew I wouldn't have had to put up with stupid comments like that, but it undoubtedly would have opened the door to others.

Cold comfort

A priest Mom was listening to gave a homily on a miracle Gospel and essentially said that everyone would be cured in the end. She told him that one of her sons in a wheelchair finds that "very cold comfort."

I do.

I'll be dead in the end, so it is supposed to make me feel good that once I am dead, I'll be cured?

But I'll still be dead.

So, maybe an archeologist will dig me up in millions of years and exclaim, "My God, this dead body is the healthiest specimen I have ever seen. No disease, conditions or anything. It is astonishing." And then she will excavate me and take me on a worldwide tour labeled as "the Healthy Dead Man." And she'd become rich and happy. I'd be dead.

Who am I kidding? With the way the planet is warming, it won't be around in millions of years, and I'll be cremated.

What to do

Mom and I have been talking about starting to use condom catheters.

On the off-chance, the name is not self-explanatory, let me explain. It works like any condom except it is connected to a bag that collects urine. Also,  unlike a normal condom, the inside is quite sticky.

I tried one years ago and it leaked, so I was not impressed. But Mom has been doing research and thinks it would work.

We even considered who we would hire to perform the shaving -- to allow the condom to stick.

I was warming up to the idea -- and the freedom it would provide -- until it occurred to me that I'd have to abandon getting up and getting dressed myself.

If I did away with saving for retirement, I might be able to afford hiring someone to come in every morning. But I am sure that would be a mistake, the saving part, unless I am certain I'd kick it while I am working.

I am also not sure I am ready to take that step. I don't think I am clinging to shreds of independence. And it  definitely isn't modesty.

I think this is a job for my Head-shrinker.  Not the condom-attaching, the figuring out why it makes me sad.

In defense of wheelchairs

Gram loved my wheelchair. She thought it was freeing and enabling.

For me.

She had no interest in using one herself. She didn't need it. Except she really did.

I thought of this when I saw the photo of Bob Dole being held up so he could stand and salute President Bush's coffin.

Granted, Dole at least used one, but in his mind it is better to be manhandled into a standing position, so he can salute than saluting from a chair.

And it wasn't just him. Emotional, read the headlines, stirring.

I hate my chair. I'd love to discard it but not unless it is unneeded.

It actually was emotional for me. I wanted to cry because someone was all to eager to shed a wheelchair, and this society thought it was stirring.

She gets it

I went to Target today to buy  some Reese's Peanut-Butter Cups for the best little sister in the world.

I went through the garage because I wasn't sure of the weather.

When I returned, I stopped by a friend's office to chat with her, and I mentioned my shopping trip.

She asked how I went because the doors are not friendly.

I told her I can open nonautomatic doors if I have to.

Of course, she said, but just so you know, I am always up for a trip to Target.

My stupid left foot

I have two pairs of socks that, when combined with Uggs and foot-warmers, keep my feet downright toasty. This is awesome. At least that is what I thought until today.

My left foot started jumping shortly after I put on the shoes and socks.

I tried stretching, which often works. Nothing.

I tried Advil, which  usually works. Nothing.

I tried standing, which always works. Until today. Nothing.

I was teleworking, so I messaged my boss and told her I was taking sick leave for the afternoon.

Then I called Dad and he changed my shoes and socks.

Problem solved.

Apparently I am not allowed to be warm.

Sleep, who needs it?

My Tuesday actually began Monday night, when my nose decided it was mid-April and it had allergies. About quarter of 1, I called my sister to ask her to get my nasal spray in hopes that it would help me breath again.

She did, but it didn't really. Finally, about 1:30, I fell asleep till I had to get up about 6.

I had to call my sister then, too, for more help, which she again kindly provided.

I would have teleworked, but I had scheduled lunch with a friend.

So I got to work, and she canceled.

At lunch I took Fame out in the cold and accidentally ran into some grass with one wheel. I didn't get stuck, but the wheel did get all muddy.

No problem, I thought. It had rained the day before, so I would find a puddle to clean the wheel off. One tiny puddle is all I found.

Then another meeting got canceled.

I should have stayed in bed.

Mea culpa

I have sinned.

When I had a rear-entry van, we would park in any handicapped parking spot.

Now, though, with a side-entry van, I have learned that not all accessible spots are created equal.

If you need to lower a ramp to the side to get out, you will learn that very few handicapped spots are can accessible.

Sorry.

Thanks

Here is a fun Thanksgiving riddle for you: How long does it take someone in a wheelchair, stuck in the grass next to a sidewalk of a main thoroughfare, to flag down help?

I don't actually know because I didn't look at my watch when I got stuck today, but I got home 25 minutes later than expected.

I have run off the sidewalk  or path recently more than I used to. I would like to blame the chair, but it could well be the latest awesome feature of Friedreich's ataxia. I am so lucky!

When this happened, I just sat there, confident someone would stop. Then I started delicately waving, just flicking my wrist. Then I started flailing my arm that wasn't holding Fame's leash. I was right at a stoplight, so  I am confident people saw me.

After a while, this SUV in the far lane seemed to see me, and they must have come back to help me because I did not see them turn but then there they were.

A young couple got out and asked what they could do. The woman asked how long I was stuck there. Too long, I said.

Happy Thanksgiving, she said. It is now,  I told her. Go get warm, the guy said. It was really cold.

So I went home and got warm. My sister cleaned my wheels as I tried without success to think about her and the couple that stopped, not the  #@#$s who drove by.

Dangerous

A friend at work asked me how I was today.

I laughed and said that is a dangerous question to ask me.

She asked why and then before I could answer, she moved on to another subject.

The answer, of course, is if you are a relative or one of a handful l of friends I trust a lot, I just might tell you.

The Office

I like to go into the office. I get to see friends and interact with people in person, rather than by email or google chat.

Don't get the idea that it is easy, though.

It is a struggle, many parts of it.

Friends make it worthwhile, but how do I know when it is just too hard?

I suspect I'll just know.

Independence -- bah

My headshrinker asked me if I want to be independent.

If that means do I  want to go places on my own, when I want, without concern about whether the destination is accessible, has a bathroom I can use, etc., then yes, I want to be independent.

But short of a cure, a wheelchair-accessible self-driving car, a chair that handles stairs but also narrows to get into small bathrooms, or Miss Marvel as my girlfriend, it seems unlikely.

Sadly, those too seem unlikely.

So I told her I want to win the lottery and hire a butler.

That is also quite unlikely.

I think it would surprise some people to learn I don't want to be independent because they see me trying to do things on my own.

It's only because I feel like I impose whenever I ask for help. Everyone has stuff to do, so I may struggle at something and take forever to do it, not because of my need to do things myself but because I don't want to one a bother.

I may survive

I haven't posted in 10 days. That is bad.

It means, as you know, that I am struggling and I just want to go to sleep or watch TV or read comics rather than face my world.

Doing any of those three awesome things, though, tends to make things worse.

So here I am.

My side still hurts. I am going to my doctor tomorrow. It doesn't feel like a bruise.

It is cold and dark and gloomy.

The news makes me sad. But it also makes me feel guilty for leaving my newspaper friends.

People I know are unfairly challenged.

There's more, but I'm taking a nap.

Saintly middle manager needed

God needs some solid middle managers to bring his plans into reality.

And God does have a plan.

People say of tragedies great and small that God has a plan and we just can't understand it.

Not so. Let me lay out the three-part divine plan (the trilogy of the trilogy so to speak):

1. Let's make a lot of people (by evolution) and give them free will, 
2. Let's hope they rejoice on earth, and
3. Let's hope that all the people do good and go to Heaven.

After #1, the plan's outlook looks hazy.

Great idea, but unless the divine trains run on time, the plan has no chance of being fulfilled.

Illness, for instance, muck up #2 and can prevent #3. And I won't even touch on people whose lives are touched by real evil.

God clearly is an ideas person. This is where the middle managers come in. Not priests, I am thinking a choir of angels or the communion of saints. They could perform a miracle here, a healing there to get things going.

I was planning on nominating the patron saint of managers to lead the effort. But I can't find one. A patron saint of playing card manufacturers, no problem. (The three wisemen). Managers, nope.

The idea that illness and evil are repugnant to me as if for God the ends justify the means.

So I am sure God is just starry-eyed dreamer in need of a manager.

Inner dialogue

I fell over the arm of my chair and really hurt my lower rib.

Oh, that's awful. Maybe you shouldn't use it for a while, stay off it, so to speak?

Good idea, well, except I use a wheelchair and have no balance, so every move I make hurts.

Oh, stay in bed then.

 That might work, if I didn't cough or breathe.

OK, ice then. Ice will help you feel better.

You know what, you're right. If only I could keep the ice on the bad spot.

That's easy. Use your harness. That'll hold the ice in place and you.

Good point, but ...

Geez, what now?

Well, if I have to go to the bathroom, I'll use a urinal but I still might run into issues. And if pee splashed, say, on the floor, I might not be able to clean it up seeing as I am harnessed in.

What are the chances that'll happen?

Pretty good. I'd say 100%.

Well, look: You're the one with Friedreich's ataxia. You have been in a wheelchair for almost 20 years. You know you're screwed if you have two or more problems like sore ribs and  a wheelchair. We just can't handle it.

That's what I was afraid of.

Scared of the dark

When I was confirmed, one of my older sisters wrote me a note on paper I can still remember. It was off-white at the bottom up to violet at the top. The top wasn't simply a square edge either. It was a design.

In it, she said we had something in common, night fears, and this was how she fought them.

I could have used that letter last night. I was too tired to watch TV, but sleep wouldn't come.

Instead, all I wanted to do was cry, and I don't know why.

Neither healthy, wealthy nor wise

When I turned off my TV, the lights were still on downstairs because my nephew and his dad were still out at hockey practice.

This made me feel good, like I was going to bed on time. "Early to bed ..." and all that.

Then it was all I could do to stay awake at work today.

It might have been because of my morning. Wardrobe malfunctions -- actually the clothes worked correctly, my body didn't -- made two changes of clothes necessary. And while my sister has to do most of the work, these types of issues take a big toll on me mentally.

I am being careful

To use a urinal while in a wheelchair, one must edge toward the front of the chair, so that everything is, as my doctor said, "descendant." At least I need to.

This means undoing my seatbelt.

Until recently, this worked fine.

Twice in the past week, though, I have coughed after I set the urinal down but before I redid the seatbelt.

The results have been more or less obvious. I fall onto my upper legs and then take a header onto the floor. Actually, I take that back. The first time, I somehow steered my chair toward a little table in my bathroom and rested my head on it until my sister rescued me.

Not sure why this is happening or what to do.

Halfhearted

The cardiac surgeon gave me a lukewarm thumbs-up Friday, saying essentially I hadn't had big problems since I went off the heart drug so I might be fine. He told me he can't see the future, so he can't predict, but things are positive.

It wasn't the "YOU'RE CURED" I was hoping for, and I thought surgeons were a little more positive. But I'll take it. I guess I have to.

Careful as I wanna be does not mean stupid

My sister came into my room last night as Mom was helping me to bed.

As soon as I read this story, she more or less said, guess who I thought of? Mr. Careful as I wanna be. She didn't say the title with the awesomeness it deserves.

Since then, I have been trying to figure out how you could use a power wheelchair on an escalator.

My chair would be too lengthy for two steps, but I don't think the three wheels would rest well on three steps.

The guy was on an up escalator. The only way I can figure is if you turned around and tilted your chair as far back as it goes. You then might be able to maintain a level sitting platform despite the escalator's slant.

 But a reclined chair doesn't move, so I am not sure how you'd get off.

On a down escalator, you would not need to turn around, but the other issues would remain.

But all of my uncertainty about a wheelchair and an escalator will not lead me to attempt it.

Traumatized toes

At my physical, I asked the doctor to look at toenail that had a split in it.

You're going to lose that nail, she said, indicating that the toe and the one next to it had been traumatized.

For the life of me, I can't remember what I did.

Clean bill of health, sort of

At my physical today, my doctor assured me that my  year of heart crap  is not a sign my body is wearing out.

This happens to all sorts of people, she said. It will not be a cause of a shortened life expectancy, pretty definitive for a doctor.

That isn't exactly what I think. My idea is not that my heart will kill me, just that the rest of my body is going to follow my heart. But whatever, good enough, I'll take it ...

... if she had stopped there, but she didn't.

No, she added, what will shorten your life expectancy is the mobility issue.

Ummmm.

It's not like I didn't know but still.

Maybe I should have told her my sister's theory: that I will either choke to death or die laughing.

I win an argument with myself

"No, I don't think all people are jerks," I thought to myself  yesterday morning as the group I followed into my building let the door close more or less in my face.

OK, I may not have used the word jerks, but mom can consider my censorship an early birthday present.

"Not all," I continued, knowing I'd not taking that sitting down (like I have a choice). "My friends, for some."

"Fine," I thought, "but some are jerks."

"Whatever," I responded. "Even jerky ones just don' t think."

"Which is what makes them jerks," I thought.

By this time, I was at my desk.

On the way out that night, a woman with a box pushed the button to open the door and motioned me out first.

Not anatomically impossible. Sorry, Rookie

When we were young, we played baseball in Gram's field. It was plenty big until someone (maybe Carlos) bashed a homer that sailed into the driveway. Then Dad made us switch to softball.

One of the regular participants was Rookie, the older brother of one of my brother's friends. I was the younger brother of one of his brother's friends.

One day, while on second base, Rookie accused one of the defenders of spitting on him.

He was not believed, and somehow it eventually came to be a joke that he had somehow peed on his own back. Yes, that was anatomically impossible, but we were little boys who found it hilarious.

I started thinking of the incident earlier this week after peeing on my back. Granted, I was lying down, not standing at second base, but still.

It began innocently enough. I woke up to go to the bathroom, but when I moved my legs to use urinal, the leg fell off the bed.

This was fine til midway through the, hum, emptying of the bladder.

At that point, the foot that was dangling off the bed, touched my cold chair.

With the speed of a pinch runner stealing third, the leg shot straight up, upsetting my use of the urinal. Pee shot everywhere, even my back.

With my sister's help, I changed everything and got in my wheelchair for the rest of the night.

On my own, I began thinking of Rookie.

It's not me

Today a biker wave at me. I didn't recognize her, but that happens a lot.

The other day while waiting for a ride, I noticed this woman keep looking over at me.

Now, if I were delusional, I'd think I am the shit (sorry, Mom). i mean I am, but these people re waving/looking at Fame.

Happy go lucky

As much as I enjoy annoying my sister by telling her people think I am awesome. This was too much for me.

A friend told a sister-in-law who told Mom that I was happy go lucky. Me!

I do think I am cheerful mostly outside of family. I'd argue that even in the family I am rarely a total jerk--when I am grumpy, I usually stay in my room. But I am afraid of what my sister would do to me if I made that argument so I am super grumpy all the time at home.

I find it funny how I come across to non-relatives.

Geronimo and I

Geronimo has been on my mind lately. Not the real Indian but the Marx toy from my youth.

Most action figures these days have one or two accessories. He came with 37! (And quick rebuttal to those who mock my collectibles: Those accessories sell for about $4 a piece.)

The reason I have been thinking about him is not because I want to get him out of storage (I do, though, him and trusty steed Buckskin) but because I have accessories, too.

And I don't mean belts and jewelry. I think I have two belts and one ring, none of which I wear.

I asked a colleague why she was not at a work-sponsored workshop I thought she was attending. She told me, and asked why I wasn't.

Too many accessories, I said, both quantity than mass.

I  have crap that I need if I go somewhere.

A lift, shower chair, hearing aids, pills, cushion covers, urinals, accessible van, dog stuff ... and that's just of the top of my head and just the disability-related stuff. Also only the inanimate stuff. I need human help, too.

All that, and I don't even get a trusty steed.

Damnation Imagination

I have not been able to fall asleep at a reasonable hour recently, so I have been reading a fair number of comic books on my iPad. These days the 90s' Miss Marvel, featuring the 25-30-year-old Carol Danvers. (As opposed to the current Miss Marvel, which stars a teen.)

In the book, Carol goes on dates.

Given this and my late-night reading schedule, it was perhaps inevitable that one night I would dream about going on a date with the superhero.

I did, and accessibility issues, like stairs, become a thing of the pat when your date can lift a power chair with a pinkie. Parking? Psshaw. Carol will just fly us to dinner and the movies.

But ... I am in a wheelchair? Come on. I can dream about a super-strong, flying woman. Me out of a chair, though, that apparently is a bridge too far.

Cinder-Matty

Try as I might, I cannot get the old jump-rope rhyme about Cinderella out of my head.

Cinderella, dressed in yella
Went upstairs to kiss a fella
On the way her girdle busted
How many people were disgusted?

See, I am wearing what is called an abdominal binder but is essentially a girdle.

It holds my trunk muscles in place and is supposed to provide me with a little stability.

It seems to be working, but I still say that stupid rhyme i my head multiple times a day.

It does make me feel like Cinderella and I have something in common, and raises the question, "Did Cinderella have Friedreich's ataxia?

Not as good as a comic

Allow me to rewrite a scene from Born Again, the awesome Daredevil story, starring me.

In Born Again, Daredevil's alter ego more or less has a mental collapse. The Kingpin helps, but the character falls apart. And at one point, after he escapes certain death, he is wandering New York. He gets hit by a car and later stabbed. You see him bent over, gritting his teeth, and he thinks:

"It's not just the knife wound -- it's that rib of mine that popped like a wishbone when the Kingpin slugged me -- it had the decency to stay where it belongs -- until that car hit me ..."

He then goes on to save the city and reunite with his hot girlfriend.

In my rewrite, I am always on the edge of a mental break.

 "It's not just the Friedreich's ataxia   -- it's that rib of mine that popped like a wishbone when I fell over the arm of my chair and whacked it on my iPhone -- it had the decency to get better -- until I rammed my chest into my keyboard tray at work."

For the record my rib didn't "popped like a wishbone." But that sounds better than bruised/cracked.

I am pretty confident I will not save the city and reunite with a hot girlfriend.

Stupid ears

This happened Tuesday, and I decided it is an apt microcosm for my life.

I have decided I should use my microphone more. It works when I am with just one person but have been disappointed with its failure to help in meetings. My audiologist did not expect this either. Of course, she also told me very authoritatively that my problem was the auditory nerve, which sounds reasonable.

However, after my neurology appointment I am pretty sure  my auditory nerve is normal. The fairly unique problem in FA hearing loss is the connection between the brain and the auditory nerve. It is messed up. She could have learned this is she called the neurologist as I suggested. But  I digress.

To force my use of the mic, I put it on my lanyard. to make sure it doesn't drop in the toilet, I take my lanyard off when sitting down. However, this raises the prospect of the lanyard knocking out a hearing aid. Which happened.

Fortunately, it did not fall in the toilet, just on the ground.

My shoe then pushed it into the other stall, so unreachable to me. Fame could have gotten it, but I am told dogs eat hearing aids.

So I had to go find someone to get my hearing aid.

But the hearing aid was still out, which makes it kind of pointless to use the mic.

No comparison

I hate Friedreich's ataxia ... still.

The latest issue, which is by no means new, is that I am comparing myself with my brother, who does more manually.

I might be able to do more, but I don't have to. And when I try, I usually fail.

FA is so personal that what I can do, he may not be able to do. And vice versa.

Hate it.

Not sullen

A few years ago, a friend asked how old the niece and nephew I live with were.

Eleven and 12, I told her.

Well, you still have a few years before they become jerks, she said, not that she had met them. She just meant before they become stereotypical sullen teens.

They have not become sullen. None of my nephews or nieces have ever been sullen to me, a factor I have attributed my siblings' parenting, my cluelessness or awesomeness. Take your pick.

But now, I need to reevaluate.

It could still be my awesomeness. Who am I kicked? That doesn't fade. I suppose it could still be cluelessness. My siblings, though? Not part of the latest good teen story.

A friend of my niece's is living with us this year.

I coughed at breakfast Saturday and spilled some tea.

She got up, and I thought I had driven her off.

Instead, she got up, got some paper towels and took care o the spillage.

Bad year

I had a recurrence of A-fib on Monday. We called the cardiologist, and she wasn't concerned. We went in Tuesday, and we decided it was probably because I was dehydrated.

So all is good, but lordy, do I hate 2018.

I loathe cold weather but wouldn't at all mind if it was January 2019.

We're nine months into the year. For six, I have had issues with my heart or the meds they gave me to fix my heart. For one month, I was without my chair. That leaves January and February when it cold, gloomy, depressing.

What next?

In the office space

I went in to the office today, what will be my only  day in the office in August.

It was the first day I had been in since July 20, when the whole chair debacle began. Actually, it had been around for months. July 22 was when it reared its ugliest head, and my chair didn't charge.

I enjoyed seeing my friends even if it was the first time since then that I wore long pants and collared shirt.

Wardrobe malfunction

Janet Jackson is a world-famous celebrity, an actress on Fame, a singer, a dancer, a multimillionaire.

She has many attributes anyone would kill for. What do I share with her, after my swimming "performance" Sunday?

I had said to Mom before we left that it might be time to hang up my suit and get a new one.

Then as I swam the backstroke, I started feeling more  rushing water on my butt than I should. Shortly thereafter, I reached the pool wall were my suit was dropping, and parts of me that should not Super Bowl).

Fortunately, the volunteer was a guy I am friends with, and he helped me recover my dignity.

A tattoo for Mom

My sister and I were trying to persuade Mom to get a tattoo for her upcoming birthday thee other evening. We were unsuccessful, but after what happened at the Children's Hospital of Philadelphia, I am not willing to write it off as impossible.

We were talking to the doctor when Mom asked her only question, "What about cannabis?"

My sister has been trying to get me on medical marijuana for years, jokingly, I think. But to hear it from Mom was something else.

Long story short, it is not super-helpful.

If nothing else, it confirm a mother's love because I don't think Mom cares  for marijuana at all.

Deadpool at the neurology appointment

My niece says her favorite moment of my neurology appointment was when the doctor asked me what color her shirt was. I then sad without looking that she was a wearing a Deadpool shirt.

This was a safe guess even if I hadn't known for sure. She has several T-shirts featuring Mr. Pool.

But wait, you are no doubt asking, why was your niece there?

She  is doing a yearlong project on Friedreich's ataxia and wanted to chat with my doctor.

Chat they did. I missed a lot of it because I went to do the FA scales, which measure the disease's progress, and my doctor sat with her and Mom and answered all of her questions.

I am sorry I missed it. Mom said how neat it was to hear them talking back and forth about FA.

I don't know who is cooler: my doctor for taking all that time to talk to a15-year-old or my niece for doing the project. Not really, my niece, but they both rock.

Do you feel lucky, Matty?

I have always turned down opportunities to participate in phase I drug trials. This may be overstating it a bit, but phase I trials seem less interested in making you well than in making you ill.

You hang out in a hospital while researchers (I assume doctors and nurses) give you ever-increasing doses of the new drug, monitoring results, until you get really sick.

The American Cancer Society says, "The main reason for doing phase I studies is to find the highest dose of the new treatment that can be given safely without serious side effects." So basically what I said.

I have never been desperate enough. Note the past tense.

I am of an age and a disease progression that makes a treatment more necessary sooner. If I have to spend a few days barfing or bleeding out my eyes (probably not), it might be worth it.

I learned of several possible upcoming phase I's at my visit to the Children's Hospital of Philadelphia (more on the visit in coming posts). One sounded quite cool: gene therapy. It's not happening tomorrow and there are bigger risks, but recent research reports "rapid and complete reversal of sensory ataxia by gene therapy" in a mouse with Friedreich's ataxia.

Of course, a mouse isn't a person, as my doctor said, so we'll have to wait and see if it makes it to trial.

The main risk if it gets to phase I and I take part is that they guess wrong on the best dose in phase I.

One can only get gene therapy once, so if they come up with the winning dose in five years,  I can't get it.

But in five years, my body will be worse by five years.

So I have to ask myself: Do I feel lucky?

A handful

I am a lot of work. Just ask my sister.

I am not sure, though, whether the helper or helpee suffers more.

My chair allegedly returns tomorrow. I say "allegedly" not because I doubt the repair place ... No, I do doubt it, but I think it is telling the truth.

But for the past month the broken chair has meant I have not been able to transfer. Every time I wanted to take a nap or use the toilet, I had to ask someone to put me in the proper place. This was in addition to all the other stuff I need help with.

I can't tell you how hard/embarrassing to have to ask to go to the bathroom.

Under Pressure, disability style

As much as I like Queen (and Vanilla Ice), I am not entirely certain they get pressure.

I am back in my manual chair. I realized yesterday that the POS loaner was putting an awful lot of pressure on my butt. With medical pads, I think I avoided open sores, but just.

I was told the repair on my chair has been expedited, but no one can say what that means. Insurance remains an issue.

I can't see to read real well as I am wearing my old glasses, having given up on my new glasses, which I liked but did not stay on my face.

And I haven't been to work in three weeks.

My name is Matty Montoya ...

I am feeling a special affinity with Inigo Montoya these days. NOT because I am a revenge-driven master swordsman. I am, of course, but that's not why.

There is a scene in The Princess Bride where confronts the object of his revenge. Said object runs away and locks the door after him.

Thwarted in his attempts to break down the door, Inigo starts calling for his very large friend Fezzik. Here is how it reads in the screenplay:

Fezzik!!!!!! I need you!!!!! He's getting away from me, Fezzik!!! Please!!!
Arr!!! Fezzik!!! Aaargh!!
Arr! Arrgh!< Fezzik breaks door down > Thank you.

Every time I have to call someone for help, I think of Inigo. 

Be gone

The night in the hospital after my heart operation, I asked the nurse whether I'd be take the amiodarone that  night.

It wasn't on the chart, so she said no, adding that it would be OK be cause it has a half-life of forever.

I finished my course  of the drug, so part of me is worried that my heart will miss it and I'll wind up back in the ER.

Most of me just wants it the hell out of my system because I am so sick of the side effects.

Avengers Assemble, that means you, iPad

Despite what a favorite T-shirt says, everything I know I did not learn from comics. MASH, Springsteen lyrics, and D&D helped, too.

Nevertheless comics have been an important part of my life for 30-some years. Actually, one of the first comics I remember is a 1978 Thor that Mom bought for us to read on one of the long drives to vacation, so 40 years is more correct.

In that issue, Loki brings a news crew to Asgard to film the Ragnarok, which he attempts to start.

Lately, though, they have become harder to read, both holding them and turning the pages.

For the past several months, I have let stacks of comics sit in my room unread because it wasn't a lot of fun to read them.

Last weekend, I threw in the towel, deciding to give up comics.

My sister thought that was silly, and she told me so.

An iPad is the answer, she added. Turns out she was right!

I spent the afternoon reading Doctor Strange back issues on an awesome iPad. . It is so fast when I don't have to worry about pages. I went through eight in a few hours. Reading the paper version took half-an-hour each.

I'll miss the books themselves, but that's about it.

The other bad thing is new issues cost the same as the print version, which is dumb and makes no sense. Is Marvel, the company I read now, going to send me a print copy if one I digitally buy becomes valuable? This is moot because I won't be subscribing digitally because of that. I also won't be subscribing in print. Two losses. A big deal for the company? No, but a loss all the same.

Instead of new issues I'll read ones at least six months old with a subscription service.

I could write more, but there are comics to read.

'Dead in the water'

Before the wheelchair guy came, I told Mom I wanted him to test the charger.

He came, fixed the footplate and on-off switch. He then replaced alleged bad part on the motor. It seemed OK. He even had me get in, so he could adjust the motor.

Then we asked him to plug it in. It looked promising to start, then the charger showed an error. It was all over. It never came back on.

He fiddled with, removed the cover from the back, where the motor is, and said, "You're dead in the water."

Power had apparently been arcing around, burning things out.

It needs significant work, enough that the repair guy is recommending the company give me a loaner till it gets fixed. No word if or when I'll get the loaner.

Sorry

One of the problems with my depression is that I hurt some of my biggest fans (Yes, they will be annoyed at being referred to as fans).

It is not intentional, and I often don't even snap at them. They are just made sad by my sadness.

This weekend was bad.

My wheelchair has not charged and the power gauge has not moved since Wednesday. The parts are on order, but getting an ETA has been worse than pulling teeth.

I am in the last week of amiodarone, but I am not sure how much more of the constipation side effect I can take. I get constipated, take laxative, which works too well, and wind up with an upset stomach and more constipation.

It rained a lot.

I am falling more.

So it was and is bad.

Happy, but not sad

Not to brag, but I had an awesome theory, at least for a few days.

The world, I decided, is not black and white, so why does your emotional state need to be? Sure, I am unhappy a fair bit of the time, but that does not at all mean I am sad. That happens less frequently.

And, I further decided, maybe I just need to accept my unhappiness.

I hardly got the theory out of my mouth before my counselor threw water on it. She actually wants me to work to be happy.

For the lazy, like me, work is fundamentally bad, so becoming happy might mean making me sad.

'Dealing with a lot of shit'

In one of the funnier scenes in Bull Durham, Crash goes out to the mound to settle his pitcher down.

pretty soon, most of the players on the field come in to talk about something. The pitching coach  comes out to see what's going on.

Crash explains the issues, adding, "We're dealing with a lot of shit."

I am weaning of Amiodarone. Do I think my heart is going to explode or go off the rails? Not this week, but it is an issue (maybe not the exploding part).

My wheelchair is not charging properly or at least not seeming to.

My right hearing aid is irritating my ear.

I could go on forever just about.

But am I writing about those issues? No (well, yes, I did but just in passing).

Instead, here is what happened when we arrived at work.

We were following a landscaper. It went into the area wit the disabled parking spots. The spots were all blocked off with tape and cones, apparently just for the landscaper, because a worker moved enough cones for the truck to pull in parallel to the curb, across a bunch of spots.

We just stopped in another spot to let me off. No big deal.

But what the flying fuck? 

The landlord set this up, I was told, so apparently the owners of the building where I work believe that disabled spots aren't for disabled people but for the landlord to do with as they choose.

I was so annoyed I wrote out building manager and told him "This is a really poor use of parking spots people need."

Don't I sound pissed>

I take that drug!

I was watching a spy show -- Chuck, all right. Yes, it is silly, but it makes me laugh.

Anyhow, Chuck and his brother-in-law doctor were with another guy who bad guys were hunting. The bad guys were closing in, so the guy took a pill, gave Chuck a note, then shot himself in the chest.

The bad guys appeared, saw the guy was dead and left.

Chuck looked at the note, which said, the pill was amiodarone; there's a med kit in the desk; please save me.

The doctor says, amiodarone can stop your heart. He then injects him with adrenaline, and the guy is OK. Except for the gunshot.

Now, I am not going to get chased by baddies, but it is good to know I have a pill to fool them. Best thing about my heart drug.

She's tough

To a person, everyone I tell about my ER visit, including my doctor's nurse, applauds me and says better safe than sorry. Then there's my doctor.

I was seeing her to follow up on the visit. Her advice Take an ibuprofen.

Dumbfounded

About two months ago, the batteries in my wheelchair  started going.

It was nothing major. Just every so often, they wouldn't charge properly. But knowing the way insurance works, I asked my wheelchair provider to get me new batteries.

About a month ago, they failed to charge for three nights in a row. I was a bit worried so I emailed again and asked for an ETA. About a week later I heard back -- they were awaiting authorization. I wasn't sure what that meant, but I just said OK because it was more or less OK. The battery level could not be trusted, but it stayed charged.

I couldn't sleep last night, and while tossing or maybe turning, I noticed the light on my wheelchair charger was not green or orange but blood red. I fiddled with it and got it back to a friendly color, but   in the morning it was red again. It also didn't appear to have charged at all.

I teleworked.

Mom called them, and the problem isn't them but my doctor. They faxed her a letter of medical necessity that she needed to sign and fax back THREE times. I love my doctor, but this is probably the 10th time I have debated leaving her to find a doc with a better office staff.

I offered to pay out of pocket but not a chirp from the provider.

I am home for a while, I suspect.  

You had to go there, A.J Jacobs

Of all the authors I have read, A.J. Jacobs strikes me as the one I am most likely too be friends with.

He writes like I wish I could. He makes jokes that I find hilarious. He seems like a good guy. Plus, I have a crush on his wife, which might cause some friendship friction.

I'd love to be friends with Sarah Vowell, but I suspect she is too quirky cool for me.

In an interview with Reynolds Price (another writer I'd like to be friends with, but his death limits this), Mom mentioned something from Annie Dillard about how we'd wear hard hats when praying if we knew what was going on. I love Anne Lamott; she is insightful, funny, honest, etc. Birsut I'll be honest, I'd want a hard hat if I was going to be her friend.

That is mostly it for nonfiction on writers I read regularly.

I'd love to befriends with Lloyd Alexander or J.R.R. Tolkien, but they're dead. And while Neil Gaiman and Michael Chabon are my heroes, I am not sure I know enough about them to want to be friends. (Who am I kidding? They would be awesome.)

Anyhow, it all works out because in his latest book, It's All Relative, A.J. -- it's cool to call him by his first name, we're pals -- tells how we are all related, so of course we'd be friends. Everyone loves his relatives, right? (Note to Julie Jacobs: I am probably not as closely related as you and A.J.)

The book, as usual, is quite funny and fun. He decides to throw a family reunion, and I believe the only requirement is you be a person. I think he decided against inviting animals but am not postitive.

One of his reasons for throwing it is to balance out his karma. Weighing against him, he says, is something that, if we weren't related, would cause me to unfriend him. Weighing against him, he says, is his use of wheelchair bathrooms.

NNNNNNOOOOOOOOO!

This has been a thorn in my side ever since I been to use wheelchairs.

Whether it is largos people who want extra space, people changing clothes or tall people who like the fit of the raised toilet, if you can walk without aids, do not use the accessible stall.

My relative  and I are going to have words.

She talks

I have been working with Fame to speak on command.

When there is a treat involved, she is perfect. When I use hand signals, she is pretty good.

But one is not always able to make hand signals, so I need to get her to speak with voice commands. She is pretty good there, too, but what if I am commanding her while upside down?

I fell this morning, or would have if not for my awesome kung-fu grip. Instead, I ended up doubled over with one hand grabbing my super-pole and another on my chair.

I was about to let myself gently to the floor, so I could use my watch to call for help. Then I realized my watch was still charging and out of play.

Looking underneath one arm, I asked Fame to speak and she did.

Granted, it was right before breakfast, so there was food involved. And she has realized that when she speaks, someone comes to help me, which means someone to  play with or try to.

But she spoke. My sister came. All good.

Matty has another brother from his mother

When the ER registrar asked my sister who she was, she said, "I'm his brother."

Some folks might have brushed this off as a slip of the tongue, not this really kind registrar.

He went into a story about a niece "who wanted to be a guy."

I didn't hear much of this and was really confused why he was bringing up his transgender relative. Mom, though, explained.

Why was I at the ER?

If you ask my sisters, it was because I wanted attention.  One of my sisters-in-law i undergoing surgery at the Mayo Clinic, so the thinking was I felt forgotten. NOT true mostly. I mean at all!

Actually, I have a pain at the base of my throat, and when we called, the doctor's office sent me to the ER, concerned I might have a blood clot.

But the CAT scan was negative.

So I came home.

A few quick takes:

• I hate knowing people in the ER. My doctor this time was the one who admitted me for A-fib in March.
• I think my pathetic veins are going to haunt the young extern and send her into a truck-driving career. She struggled and struggled with no luck. I felt bad.
• Mondays are busy in the ER. We were there all day more or less.

Sticking around

I went looking for a post I had written a while ago about a guy with Friedreich's ataxia who had killed himself. It's not that I am thinking of killing myself, not at all, But I wanted to see if I still agreed with what I wrote 11 years ago (it turned out).

It varied.

On the one hand, one of his key arguments, presented by a friend -- that he refused to let FA win -- still strikes me as bunk. How is killing yourself not letting a disease win? It seems that you are totally capitulating to the disease and taking an easy way out.

But another argument -- that he didn't want those he loved to have to care for him -- is more seductive.

I know that it is not at all my decision and that my family and friends help out of love.

Despite that, I have been thinking how rotten it is for them to have to care for me. I know they are tired, not of caring for me, just in general.

One of my main reasons for not wanting to kill myself, aside from the sick feeling it gives me (and the 12 year of Catholic school) has been the desire to see how my life turns out. That's turning hollow, too.

I will have great fun, I know. Will my niece makes the Olympic hockey team before or after she cures cancer? Will my nephew become the next Steve Jobs? Will another nephew win a Grammy? Who will they all marry?

For me personally,  I foresee more pain and falls, not awesomeness.

Ultimately, none of that matters. I am here for the duration.

Oops

After nine years at USA Today, I shattered a glass elevator. In just under seven years at my current job, I shattered part of a mirror at work.

Not sure why or how. it is perhaps instructive to note that both incidents occurred with the same type of power chair.

I told a friend about it and she said I shouldn't be saddled with bad luck for breaking a mirror. If anything, she said, my chair should. Then she said, oh wait, that would still be bad luck for you, better to not believe in bad luck.

I say bring it on. How much worse can it get?

Dipping my toes back in the water

I went to swimming today for the first time since February.

It felt good to work my muscles in ways I haven't in a while and to see people I haven't seen in months.

My heart held out, too! And I only checked my heart rate once!

“Well, goddamn it, Matty, where doesn't it hurt?

In Raiders of the Lost Ark, Marian is comforting Indy, but everywhere she to aches, he complains.

Exasperated, she yells, “Well, goddamn it, Indy, where doesn't it hurt?”

He points to an elbow, which she then kisses.

I was thinking my elbows are pretty clear, too, when wondering if anywhere on my body has never gotten a prescription medicine.

You see, I just got a prescription toothpaste. I didn’t know there was such a thing.

Other than my elbows, it’s iffy. My legs are out with restless legs. Major organs like the heart, brain, stomach and lungs are out. I’ve had Rx’s for my bladder, bowel, nose and eyes. I’d say my ears are clear, but what child doesn’t have at least one ear infection? My arms in general are OK, but my right hand burned badly as a child.

Plus, there is all the prescription pain relievers I have gotten, but never used.

I am a mess.

'Technically,' I'll live

I went for my first follow-up to my heart thingy Friday. It went well.

Because the operation involves making scar tissue in my heart to block the misfiring parts and the doc, or his assistant actually, said it takes three or four months for the scar tissue to fully form, we w won't know until then if it worked.

But I haven't had any problems, so  they term the operation "technically" successful, and the MD (not doctor but "Medical dude) made air quotes around technically.

He did say the first month is the riskiest (not in terms of dying but of the operation failing), so because  I made it through that, I should be good.

And he eliminated one medicine -- the blood thinner -- and said I can stop the evil heart medicine in a month. So YAY

Too far gone

When I first met with my neurologist at the Children's Hospital of Philadelphia several years ago, he mentioned several studies in the early stages and asked if I was interested.

I wasn't.

Early phases are gross-sounding. They test how much of a drug until someone gets sick or side effects. Neither are appealing to me, so I essentially told him that:

• I would let people who are more desperate for a treatment do the early phases and 
• I didn't have severe Friedreich's ataxia, so I'd wait till the kinks are worked out of the treatment.

Since then my body has kept getting worse -- my heart, my ears, my legs, everything. 

Even though I don't like them, I was now desperate enough for a cure that when I saw a Phase II trial I was eligible for, I emailed the coordinator to see about taking part.

She emailed back that my results on the peg test were not good enough.

The peg test is a particularly malevolent device developed to drive FA patients crazy. It doesn't look evil, but looks are deceiving. One side has a four-by-four grid of holes. The other side has a shallow dish with 16 pegs to go in the holes. Using one hand, you must put each peg in a hole and remove it one  at a time. Oh god, I hate it.

The study mandated a score of 150 seconds or better. I just assumed I'd meet this requirement.

I took 207 seconds.

Now that I am willing to donate my body to science (or at least to a drug company), I am too disabled take part.

My mascara

I got a  black eye the other day.

I can't remember the last time I got a black eye. I didn't even get one when I got hit in the eye at a batting cage when I was like 10.

Despite the rubber baby Matty bumpers, I whacked my eyebrow hard on my desk when I coughed. The next day Mom noticed my black eye.

This might be the fault of the blood thinner.  Or it might be my body's latest fail. Both are pretty darn likely.

Looking up to my nephew

My niece is pretty phenomenal. She is smart, articulate, ridiculously good at hockey and more. Even though he is smart and awesome, too, I would have thought it would be hell to follow his elder sister.

If it is, I have never seen him act like it. He is his sister's biggest fan.

Whenever a friend wins an award or gets a promotion, I too am happy. To a person, they have deserved it. They put in more time than me and are better than I at what won them the award, the promotion, whatever.

But along with is something else. It's not jealousy.

It's sadness.

I am sad because I'll never know if I could win an award or lead a work unit. It's hard to shine when you have to deal with failing body.

It's also kind of sad to have a 13-year-old for a hero.

More Evil Legs Syndrome

In the lists of medical disorders, Restless Legs Syndrome does not sound that bad. It's not Deadly Legs Syndrome or Murderous Legs Syndrome; heck it isn't even Painful Legs Syndrome.

Of course, anyone who has experienced Restless Legs knows it is one of the worst things ever. The need to jerk your legs continuously is miserable.

I take medicine at night to keep my legs jerk-free, and it usually works.

But this week my legs started jumping and jerking during the day. At first, I blamed an unusually cold  room. My window was open, and someone had turned on my AC, so it kept coming on.

It kept happening, though, worse than ever.

This morning I forgot to take one of my post-procedure pills -- no restless legs. Then I remembered and took it -- almost immediately my legs started jerking.

I googled the medicine. Sure enough, restless legs are a not-unheard-of side effect.

My doctor said I could stop it, but now I have to wait for it to leave my system.

Degressing

I love my family to pieces, but I have not been a fan  of big family gatherings for years.

It's hard to maneuver when I am in a crowd.

It is also hard to hear unless someone is talking straight to me. Even if someone is talking to me, background noise makes it so hard. I have to strain so hard to pick up even scraps.

Tonight as I sat quietly through dinner unable to join in the boisterous conversation, I realized another issue: I can see the progress of my disease all too clearly.

I used to be able to take part in our dinner-table talk or group games.

Like so much in my life, "used to" is the key phrase.

She's Egg-cellent

If you were to ask my sister, I am fairly certain she would say she's my arch-nemesis in this blog and one stories I tell my friends, the Kingpin to my Daredevil.

Nothing, of course, could be further from the truth. Friedreich's ataxia is my nemesis. She is a comic-relief villain like Egghead.

no, no, I kid.

She, my brother-in-law, my niece and my nephew willingly share a house with an occasionally grumpy, always bitter (but freakin' awesome) person (me). What's more, they help, all of them.

My sister doesn't even bother saying help when I call her at all hours of the night. She just answers, "I'll be right there." And she is.

She complains about me sometimes, but she's kidding (I hope).

Nemeses aren't the joking type.

Short takes from Operation Ablation

• I wasted not to cough till I healed. I didn't even bother pointing out that this is as silly as telling  me not to fall because I am on blood thinners. I have been OK mostly, but today I doubled over when coughing. That hurt.
• Until last night, I had despaired of ever getting all the adhesive off my body. Fame, really my sister, solved it. Fame stepped in gum on our walk over the weekend. My sister got it off with canola oil. It worked on the adhesive, too. YAY!
• Long-term teleworking -- until I am off the blog thinner --- is boring.
• My nephew and niece both offered to stay home from school to minister to their ailing uncle.

So far so good

About 72 hours ago, four or five people were shaving my chest and "nether regions," as Mom called it, putting really cold patches all over my body and putting a mask over my mouth and nose.

At first, it was just oxygen. Then the anesthesiologist came in and pumped something into my IV, and the oxygen changed and tasted bad. I coughed twice and then I was out.

While I was under, they snaked two catheters up veins on both sides of the groin. From there , they journeyed up to my heart and did something (I am still not sure what. It involved creating scar tissue to block misfires, I think.).

Then I spent the night in the hospital, where my low blood pressure was extra low, bedeviling the night nurse. But then the doctor came to se me. He was pleased. He halved the dose of the bad heart medicine, put me on a blood thinner and something for my esophagus because they had put a pipe down my throat.

He told me I might have  Afib for a few months but not worry. So I guess all I have to worry about is the blood thinner causing this:



Not really; the pharmacist said the medicine I am on does not usually cause uncontrolled bleeding.

Bad omen

One of my nieces graduated from law school Saturday. On that day six years ago, she was my personal assistant at a conference and she took a photo of me and Claren gazing at a stuffed polar bear. That was, I thought, a good sign.

Less good was today's second call with the hospital ahead of Wednesday's "procedure." (A friend at work calls it "surgery," which makes me like her all the more.)

I have to pay them in advance!

What are they saying?

We need your money upfront because you might not survive?

The boy who keeps my head safe

When I went to my old office three or so years ago, a friend asked how my living situation was going. Great, I told her, I really liked having my niece and nephew around.

She asked how old they were, and hearing they were nearing teen status, said, Well, enjoy it now. The assumption was they would become jerks once they hit their teens.

I wasn't worried this would happen, of course, and it hasn't. They both remain great.

Just a few days ago, I was putting my feet on the footplate. My left shoe hooked the side of the plate and fell off.

At that point, I heard someone come in, but when I looked, I saw no one but the house dog. I asked him who had come in. Not that I expected an answer, the house dog is not too bright.

My nephew, though, must have heard and wandered over to my door to wave.

I asked him to put my shoe on. On me, although he wears the same shoe size as me.

He replied the same way he does when I ask for his help with anything, "sure." And then he put it back on me.

Around my room, I have a chair rail. It has sharp corners.

One of the first thing we did was put foam covers on all the corners.

Whenever I look at them, I think of the 6-year-old boy who helped his mom put them on. He tested them by pressing his head into them.

Found out

I came in to the office today and the safety coordinator said to me, How are you? You OK?

I was sort of confused. I know the government is supposed to have lots of leakers, but why would my bosses or friends tell him? So I just said, I'm OK.

I heard you fell Monday, he said. Dammit!

I did, in fact, fall in the bathroom Monday.

One of the lovely side effects of the heart medicine is constipation. I have it mostly taken care of with Miralax. But as anyone with any constipation knows, when your colon suggests it is ready, you don't delay.

Wanting to take the opportunity, I transferred quickly. But I struggled to pull my pants down.

Afraid the chance would fade, I gambled. And I lost.

 I saw one of my feet turning as I stood, but I didn't sit back and try again. I kept standing. And I fell.

The problem was finding someone to help. My main helpers were not there. I hadn't seen my two other helpers. I called a friend to ask her to find a guy who would help me. She wasn't there.

Then I heard, Matt, do you need help? I said yes, and he came in and helped me up.

And then he told.

Not that I really mind. I am supposed to think about anything we can do to help me with transfers. I was thinking a concierge who would assist me, but that might be too costly.

Students to PTs

The first student PT I had come help me was good but a bit of a flake. He emailed me to cancel one day, and I never heard from him again. I don't know if he died, went to jail or what.

I really liked the next one. She was good, too, but her dad had health issues and she had to stop helping me. She did make a special appearance, though, when my current PTs were both unavailable.

I have been ridiculously lucky with my current two student PTs.

We have worked together for three years -- their entire time in graduate school. Both take the time to offer explanations or theories. Plus, we don't hang out, but I think/hope that we are friends.

So I am sad that one is leaving after next week.

I know they will both be great PTs, already are.

Everything is hard

Things are getting real as I got a letter with all the stuff I need to do pre-"procedure."

It said I can resume my normal activities in a day but just not exert myself for a few days.

My older sister, who was visiting, pointed out that everything requires exertion.

I was thinking of this when I got out of breath getting off the toilet today, unfortunately, a fairly regular occurrence. Ugg.

But in good news, my will is signed, so I can kick it.

Only kindness

I have had a disability for eons now, or at least it seems that. And in that time, I have used my strength and masculine wiles, and kindness, to survive.

The first time I can recall really losing my balance on stairs was in college. I grabbed the guys next to me. He looked moderately horrified that I touched him, but whatever, I didn't fall.

 At college graduation, three friends helped/carried me down the flight of steps graduates walked down.

In grad school, I evacuated from my room during a fire emergency. My room was on the 15th floor or something, so there were steps involved. I remember gripping the railing tightly.

I walked to and from classes every day, sometimes in heavy snow. One day after school, a gal I knew casually from the dorm said to me: We should walk home together and help each other. I did little helping.

Toward the end of my first job, I began using a chair at work. I got a key to the elevator to get to the second floor, but there were other steps. The bathroom was up a step, so I walked in. The vending machines were down a long hall, up there steps, then down another long hall. No problem. I wheeled down the first hall, got up, pulled my chair up the steps, got back in, and wheeled down to get my Coke.

 My disability now is too much for my strength, My wiles are of little help. All I have left is kindness.

I don't want to be curmudgeonly

It didn't take me long to tell my therapist (yes, I finally found a mental therapist I like) what ability I'd like back. Granted, I'd love to run or even walk, and, of course, it would be cool if my heart wasn't a jerk, but hands down it is heading I miss most.

I've detailed what I miss before, but I realized a new one recently.

I listen to music I know well, usually meaning created by the mid-'90s.

There are exceptions: Katy Perry, oddly enough, or the Gaslight Anthem. But for the most part, if you sing a song written after 1995 (much earlier for the most part), you are  dead to me.

I don't like this. I can remember rooting through an uncle's record collection years ago and he had lots of old blues and Rolling Stones but also Tina Turner and Timbuk 3 (The Future's So Bright, I Gotta Wear Shades). And yes, my uncle was cool, still is.

I, on the other hand, am well on byway to being an old curmudgeon. But not by choice.

The bidet to end all bidets

When I telework, I almost exclusively use a urinal unless I have to sit. It minimizes transfers.

And yesterday it prevented a monster colonic.

I was using the urinal when I heard this rumbling. I thought it might be my chair so I turned that off. No change. Then I followed Mom's eyes.

The toilet was erupting, much like Peter's volcano, only instead of soaking Marcia and some snotty gals, it threatened me.

Fortunately, it missed everything but my shoe and chair.

No one from any utility apologized or provided any warning either.

It would have been crazy uncomfortable had I been sitting, not to mention it would have scared me so much I probably would have jumped up and would now be dead..

More, I hope

I have a date for the ablation, and while I am sure I will be more worried about it as it gets nearer, that is not what has me scared lately. I am wondering just how much more my body can take.

I have been to the ER three times in the past three and a half months, been hospitalized once and am falling more, including on Thursday when I smacked my forehead on the floor and was shocked I didn't bust my head open, leaving me facedown in a torrent of blood. As it was, I only gave myself a headache till Saturday.

Then there is the heart medicine, which is keeping me in rhythm but is screwing up my stomach, maybe my eyes and who knows what else.

It won't get easier either, barring the unlikely medical cure or really unlikely miracle.

Niece and nephew to the rescue

It has been a few weeks since the kids I live with were on Spring Break, and I miss them.

Not their shiny, happy faces. They are teenagers, so the break was mostly spent in the attic playing Xbox.

I miss their willingness to help their poor uncle when he falls.

Mom and my sister were out at the store when I called Mom from the floor and asked her to call in the kids.

They came right down and after making sure I was fully clothed, leaped into action like a finely tuned machine.

My niece dragged me to lean against my bed. This was not too hard as I was wearing a fleece and sweats, so I slid easily. I stayed against the bed for maybe 10 seconds before my slippery clothes caused me to slide down. Seeing this, my niece grabbed me, stood behind me so I could lean against her legs as she held me up.

My nephew got the lift out and maneuvered it into position.

Once she had her legs back, my niece got my chair out go the bathroom, and my nephew lowered me into it.

It was all quite exciting and I miss having that safety net.

I am thinking about seeing if they'll drop out to beat my beck and call. My niece probably wouldn't, but my nephew?

I'll even get an Xbox for my room ... or maybe a PlayStation.

I'm not fat, or even big-boned

One of the best things about the hospital, other than not dying, was that the bed doubled as a scale and it confirmed my weight.

For the past 15 years or so, I have said I weighed 135 pounds. This was based on guesswork, sitting on a bathroom scale ad trying to stand on a scale with minimal aid until it gave a reading.

At the hospital, the first nurse asked my weight. I told him 135 and he said, pretty good, 137.

At my doctor's appointment last week, the nurse asked my sister and Mom what I weighted. This is a little less annoying when you realize we had already told her I hear poorly. A little annoying still.

I answered and said 135. According to NIH, I have about 25 pounds before I am considered overweight.

The nurse said to mom and my sister something like, are you sure; I thought was more.

???

Heart surgery for me

It's not your lungs this time, it's your heart that holds your fate -- "For You," Bruce Springsteen

Thinking about it logically, I knew an ablation wouldn't be a simple out-patient procedure with just local anesthetic. I mean, it's your heart they are going to be working on and they go up through your groin.


Hearing that it was a three-hour procedure requiring full anesthesia and hospitalization, though, just about killed me.

I saw the heart rhythm specialist today, and he had two options. The ablation or just stay on the amiodarone and monitor me for problems.

He said he is confident he can do the ablation (would you want a doctor who said he wasn't?) . His only concern is the anesthesia. Friedreich's patients are touchy about anesthesia. I'd also have to take blood thinner in the weeks before. My sister told him this is iffy because I fall regularly. He said, Don't fall.

I'll get right on that after I wish away my Afib. He was joking, of course, but that kind of joke drives me crazy.

He didn't seem to think my AFib was that bad and the amiodarone seems to be working, so he said I could just stay on that and monitor for side efects. Other cardiologists I saw in the hospital said amioderone is bad long term.

I told him I'd stay on the amiodarone. Mom and my sister probably disagreed -- they actually read all its side effects -- but they didn't say anything.

Then I asked my neurologist. He voted for ablation. I trust him, so it seems like heart surgery is in my future, and yes, I know it isn't really surgery, but I feel bad enough, it might as well be.

Reset the sign

I got cocky, I know.

Last week, I said to Mom that I transfer finest work. So, of course, on my first day back in the office after my heart went crazy on me, I fell. My legs are still not right, it seems.

To make matters worse, the first helper I called wasn't there.  The second answered but was not in the office. But he called some other folks.

Then one of the other folks brushed my joystick as he prepared to lift me up. I had turned my chair on to back it up, so it wasn't crunching me on the floor. His brush with the joystick brought me face-to-face with the toilet-paper holder, which I had already smacked on the way down.

It has been zero days since an accident.

As careful as I wanna be

I am often accused of not being careful. I have good reasons, though, for being risky.

I do not turn off my chair when putting on my coat all the time because I don't like waiting for my chair to power back up. Same thing at my desk. Nine times out of 10 I am fine, and I'll take those odds.

I think to be disabled in the world of "accessible" apartments that are up steps, doors that aren't automatic, bathroom lights that inexplicable go out and similar things mandates risk. Unless you never get out of bed.

Of course, even at my most death-defying, I come nowhere near the young man in a video I saw recently. It was on Facebook and I can't embed it. But this guy is clinging a steep, long set of metal stairs in a manual chair. We holds on with one hand a rocks his chair up a step, then switches hands and does it again. If he lost his grip, he'd die.

Most of my issues would just break  bone or require stitches.

Me, too, Bruce; me, too

In introducing The River at concert in 1985, Bruce Springsteen told a story about how he and  some other guys got the order to take a physical for the draft. He said, "We were all so scared."

I have been thinking about that story a lot recently, not because I face a draft physical, just because I too also scared.

My heart started beating uncontrollably again Wednesday night. My sister came and sat with me as I took another pill. It worked, and the doctors don't seem at all worried about these incidents. It is common until the medicine builds up enough, they say.

Their nonchalance helps, but this is my heart, my body that is again failing.

I will survive??

I haven't posted in a while because, you see, I was afraid. I was petrified. Still am, intact. And unlike Gloria Gaynor, I am not at all sure I will survive.

I went to the ER last Friday because my heart was beating rapidly and would not slow down. It didn't slow at the ER really either. It did when they gave me medication but as soon as they stopped, it went right back into A-fib.

So, for the first time since I was born, I was admitted to the hospital. Come to think of it, babies probably aren't admitted because technically the mother is admitted and the baby is in the mom .

Anyway, on Saturday they gave me a drug that has pages of side effects. The doctors hastened to assure us (me, Mom and my sister) that the drug is safe short term and is about the only option for those of us with low blood pressure.

They were going to release me Saturday, but my heart kept fluttering, threatening to go back into A-fib, so they kept me overnight.

I came home Sunday and was OK, but my heart messed up again Monday. We controlled that with an extra does of the medicine.  My primary care doc thought everything was OK on Tuesday, but the dumb snow today wiped out my cardio appointment.

The plan is to do something called an ablation, which starts in a very uncomfortable way and sounds like heart surgery.

And my will isn't done. If I die before leaving my niece all my comics, I will be pissed.

Surviving a temple blow

When I was younger, I thought a blow to the temple would kill you.

Today, I learned this was not true.

Sadly, I lessened this first-hand.

I was sitting on the toilet, and my arm was on the grab-bar for stability. The lights stayed on, but my arm didn't. It fell off the bar, and my head -- temple first -- flew into the metal box that holds toilet paper. Fortunately, the corners are rounded.

I checked for blood -- none -- picked up my hearing aid and went about my business.

But this wasn't even the worst injury of the day.

I rammed my left leg into my desk. I debated barfing -- it hurt so bad --but decided to just go about my day.

I survived, although when I got home and changed pants, there was blood and a swollen patella.

A bad day.

Good uncle. Brother? Eh.

The lawyer at the estate planning meeting yesterday informed me that the point of it was to make life easier for my people after I kick it.

This explanation came in response to my comment that my sister, my sole beneficiary, would probably share my estate, but honestly I didn't care because I'd be dead.

He actually made me think about what I wanted.

I decided to divide it all between my nieces and nephews. That sort of screws over the one brother with no kids, I realize.

Mom and I were having a bit of an argument about the cost. It was more than I anticipated. I said I better die quickly so this pays off. She said the opposite: I need to live a long time to pay it off.

I guess whenever I die will work then. As long as it's not before I sign everything.

Matty's estate

I am going to a lawyer tomorrow to make out a will/trust/whatever.

Apparently it is not enough to say my niece gets all my comics; other than that, have at it.

Filling out a form on my assets also reminds me that it might not be wise to have my sole beneficiary be my medical power of attorney. Will she be checking the value of my IRAs when she decides whether to pull the plug?

However, to might be overdue to set something up, especially since the lights went out in the bathroom again today, this time right before I was about transfer to the toilet.

Above and beyond

I work with a guy who goes out of his way to help me.

It does me no good to tell him I don't need him to do something because he can't hear.

Today, he was getting off the elevator when I was getting on.

The people getting off the elevator with him didn't hold the door for me, so he pushed the button to open the door. Then he followed me onto the elevator to push the floor. We have to "unlock" the floor with our ID cards, so he did that, even though the doors closed and he had to ride up. Then he got off the elevator with means opened the office door even though it meant he missed the elevator.

Wow.

Ruining my mood

When I left work Wednesday, I held a bunch of papers on my lap, Fame carried my lunchbox, and a bag full of my empties (Gatorade bottles from several lunches) was precariously hung on my chair.

The empties would stay in unless I hit something.

Unfortunately, I hit the side of the elevator doors on the way out, spilling two bottles. This caused Fame to drop the lunchbox.

Fortunately, a co-worker riding the elevator got off the car when she saw my spillage and collected the bottles and handed Fame the lunchbox.

Thanks, I said, really thinking, wow, that was really nice for someone I don't know.

It soon became clear how nice.

Wednesday was crazy windy, and when I turned to where Dad was waiting for me, my bag of empties blew open. One bottle fell near me; one blew into the grass, unreachable for me or Fame.

Three people passed without helping. One guy was right behind us and couldn't have failed to see the spillage. It put me in such a rotten mood.

Finally, Dad came up from the van and got everything. I was left longing for my nice co-worker.

I'm OK

When I fall and call someone to help me, I always say, I'm OK. I think I even said it after the recent fall that sent me to the ER.

The issue is I often look horrendous. When I fall, I frequently end up curled in the fetal position.

It isn't that I am hurt. I just curl up, so I can reach my watch or so I can squeeze past some obstacle on the way down.

I rarely get hurt.

Bruce Springsteeen talks about becoming adept at falling from a horse by being thrown at a local dojo. He should try Friedreich's ataxia. Then he'd be a star at falling.

Heeeeeeyyyyyy

I know I am no Arthur Fonzarelli, who had the entire bathroom at Al's as his office, but I like to consider the wheelchair stall at work as mine. I am the only guy in a chair who comes in and one of the few disabled guys period.

Even if able-bodied guys use it, which they do -- NOT THAT THEY SHOULD -- I still consider it mine and take offense when things disrupt my "office."

The other day I used the toilet, transferred back to my chair and was washing my hands when the lights went out. Again.

Other than falling, dying and having my estate sue the pants off everyone, I am not sure how to convince the landlord that this is really dangerous. The last time it happened, the landlord was supposed to turn off the sensors so the light always stay on. My company's go-between with the landlord told me today that they "really" turned off the sensors this time. What?

Then, on the same day the lights went out, I was on the toilet and some joker walked in on me. I don't lock the stall because then my helpers could not reach me when I fall.

But Fonzi didn't have to lock the door to keep guys out.

WWtFD What would the Fonz do?

Speedy

Fame leaked a little last night.

I don't know from which end, just when I got in bed there was a a wet spot.

We put a  towel over it, and I slept fine. But when I woke up in the morning, the leak had soaked through the towel.

Not relishing the idea of getting who knows what on me or my clothes as I dressed, I called my sister and asked her to help me. It probably sounded sort of flimsy to her, but she helped me.

It kept me dry and saved me 15 minutes, which doesn't sound like much until you realize my morning ablutions take about 45 minutes.

It was a nice break. But Fame better dry out!

I am not a jerk; I can't hear

Poor hearing can be annoying ... like this morning. I fell getting out of bed and called my sister. She was in the shower, so my brother-in-law answered.

My sister just says when I call, "I'll be right down." My brother-in-law just says hello and asks if I need help.

This morning I didn't answer. They sound nothing alike, but I couldn't tell it was my brother-in-law.

I am sure they thought I was dead or at least in a pool of blood because my sister came down in a towel with my brother-in-law.

See, annoying.

Or poor hearing can make you want to throw up ... like this  afternoon.

Fame got tangled up in my wheelchair wheels, and when I heard her yelps, I though it was a fire alarm and kept going. People looked at me horrified at how I was torturing my dog. But I didn't hear.

She seems fine, but ugh.

These were just two of the events tottery to lay me low today.

Solution in search of a problem

I have sleep apnea. I know this. I also know it is pretty mild.

Actually, it is better than that.

It was pretty mild years ago when first diagnosed.

My latest sleep test showed it had improved.

My new sleep doctor didn't seem to care.

With everything else in may life that is messed up, just physically, I am inclined to say, let's just keep an eye on it.

But the doctor wants me to use a dental device that  I have struggled with in the past.

It just doesn't seem too bad.

I hate Februarys

Is it too early in February to say how much I hate this month? Granted, my oldest sister and her husband have birthdays during February, the same day even. But I am tired of being cold. I don't think the sun shone all day today. Its it any wonder I am gloomy?

I didn't even send the birthday couple an email on their day. No good reason, I am just a jerk.

Bloody bathroom cheers me up

I spent most of Wednesday trying not to cry. I was mostly successful.

It was nothing big, just little reminders of how crappy my body is.

I knocked a hearing aid from behind my ear. I couldn't put it because of my pathetic coordination.

The very fact that I need them at all is another example.

My hearing aid helpers weren't in, so I asked someone else. She didn't understand what I needed because of my sorry voice, which has been mangled by Friedreich's ataxia. I showed her the other side and said, like this. Only confusion. She wound up putting both hearing aids on the front of my ear. I gave up and just took them out.

Then my left leg started jumping. It wasn't even 10 o'clock.

I went to the bathroom. The maintenance were cleaning the stall next to the wheelchair stall. I could see he was mopping under the divider, so the floor would be wet. I didn't want to transfer on a wet floor, but  I have learned not to wait.g

I transferred safely. Then I saw it!

Part of what he was mopping up appeared to be blood. And it wasn't mine!

No risks

Mom and Dad went away for the weekend.

The last thing Mom said to me (well, other than, "I forgot my gloves") was the following:

I know you won't want to ask your sister for anything more than the bare minimum, but do not take risks! 

The way I look at it I know have orders to bother my sister for anything. I mean, it could be risky if I dont get an ice cream cake tomorrow.

Rubber baby Matty bumpers

A chief reason I bought this type of hearing aid is that it paired well with the iPhone.

That allegedly meant that the phone would ring in my ears.

It didn't really start until recently for some reason.

So I am not used to it.

I also had my phone turned up quite loud, not sure why.


This is a bad combination for me.

The phone call this afternoon scared me, sent my head into my desk and raised a welt.

As soon as I was sure it wasn't bleeding, it was off to Amazon to look for bumpers.

In the water

I finally went swimming today for the first time in nearly six months. It felt good.

Mostly.

I didn't really get my head wet because of my staples. I am sure it would have been fine. The teacher was a little uncomfortable with it, so I just took it easy.

It was still tiring.

What, me fall?

I was chatting with one of the physical therapy students that I work with the other day. He told me that a fall is defined as an uncontrolled descent.

By that measure I hardly ever fall. I am almost always holding on to a pole or something when I wind up on the floor.

Yay, me!

Man hits car ... almost

When I roll anywhere, I tend to bow my head. Not all the time, I watch where I am going. But with my head down, I can navigate or avoid entirely bad curb cuts, bumps, gum or dog poop. I block wind and am able to help Mom on her quest for pennies.

It is not good for posture or breathing or apparently crossing the street.

I was approaching an intersection on the bike trail, so I stopped. I saw a car coming up, so I was going to let it pass. But it stopped completely. So I began to cross. It is a bad curb cut at that intersections my head was bowed. I raised it when I got down safely, just in time to see these of a car three feet in front of me.

I think the driver somehow didn't see me and was a stopped for someone coming the other way -- even though I was nearer and wearing a bright orange jacket.

Before leaving on a walk today, Mom told me to keep my head up. I did.

I smell blood

Mom slept poorly Wednesday night, and I made her do a bunch of stuff Thursday, like my hearing appointment. So when I needed to take a shower Thursday night, I asked my sister.

I showered no problem, she helped me into and went to make me tea. That's when the problems started.

I sat up in bed to pull down my shirt.

As I sat up, I noticed my legs were not bent at the knee as my awesoeneeme physical therapist had suggested for safety. I didn't have long to notice because almost immediately I lost my balance and fell of the bed into my chair. I managed to call my sister. She immediately came and called my brother-in-law.

They got me on my bed. My brother-in-law went to get the van (this was kind of the first inkling i had that I was bleeding; well, that and the blood on my sheets).

This left my sister to deal with Bloody Matty.

She first tried by calling my niece to help. She saw the blood, ignored my sister's "heads bleed a lot," threw her mom the requested wash cloth and disappeared.

My nephew was more  amenable, helping me put on pants and shoes, even offering to go get the staple gun and fix me up.

Then my brother-in-law came back with the van, and Mom.

The ER was fast -- home with six staples in a little over an hour.

I give my sister grief in this blog, but she is pretty incredible. No one should have to mother an older sibling. She does it wonderfully.