Tuesday, December 30, 2014

Peeing in the dark

My agency is all about not wasting electricity, which is great, but there is one minor problem with motion sensor lights, which I realized yesterday when the lights went out on me while I was in the bathroom: The motion sensor is set at a level for walkers.

A lot of people are off this week, so the darkness was kind of dangerous because no one else came in. I wound up transferring back to my chair by the light of my iPhone.

I think it was a bit of a big deal as shortly after my email to our building people, I got a reply that the building manager would fix it ASAP.

Saturday, December 27, 2014

Tunes for a cool yule

I got an unexpected Christmas present Friday: The lung nodules were stable. Unexpected in that I didn't think they'd call Friday; I was pretty sure the lungs were OK.  So it was late and I still wonder whether to leave my doctor, but I am not dying (from that anyway).

Given that news and Patrick's request, I am thinking Christmas music here on the third day of Christmas. (I am still waiting for my French hens, by the way.)

Most of the songs in my top 10 are religious -- from my youth -- but whimsical and joyful. I think the latter is because that is what Christmas should be. Religion too. The former because religion was so much easier when you're a kid, and you just accept God is awesome. I know God exists, but there are  an awful lot of gray shades that I didn't have to worry about when I  was listening to:

Joy to the World

I was looking for a video of this perennial closing hymn at St. James when I was a kid (They also used Oh Come All ye Faithful, which is not as good.), and came upon this version. I forgive the running together of verses because of the Tambourine Guy's unbridled joy, which is what this song and Christmas is all about. We may have ISIS and ebola, but "the Lord has come."

Wondrous Love

When younger, I used to mock Mom's Christmas Revels album. I can't get enough now. Sorry, Mom. Again, who doesn't wish for someone who loves and protects them?

O Holy Night

I am not sure why I like this so much. I suspect it has to do with the notes you have to hit to sing it.

Go Tell it on the Mountain

Another Revels tune and more joy. How cool is it to have good news to share?

Blue Christmas

Either by Elvis or a little girl singing to Santa, this is just great.

I Believe

OK, this song makes me cry.

This is my Box

This is from Amahl and the Night Visitors. I always thought they should have remade this with Michael Jackson as Amahl, and the king would not have a storage box but a boombox.

Santa Claus is Coming to Town

Well, of course. Merry Christmas, Baby rocks, too. He just seems to have such fun.

For Unto Us a Child is Born

This is my favorite piece from Handel. I like "the government shall be on his shoulders" line. The world could use a wonderful counselor in charge.

The Lord of the Dance

A final Revels song. It paints a picture of such a happy God. Perhaps because I can't, dancing is so cool.

This leaves out some good ones. Good King Wenceslas, my only song-writing credit till someone records Funky Cold Molina; the dance song from the real Nutcracker, the one with lyrics  and narrated by Bob Keeshan; Even a Miracle Needs a Hand; and so many more.

Wednesday, December 24, 2014

Challenges

It has been a somewhat challenging week, and Christmas is not till tomorrow!

Sunday was the shortest day of the year and I have been waiting since then for the sun to return. I suppose in theory it has, but it has been awful gloomy this week. I haven't seen it.

Plus, I have several nagging medical issues. Well, not so much medical issues as doctor office issues.

The place where I was getting my therapy -- I went twice and wasn't enamored -- charged me $95 at my second visit. I paid it but thought, that's a steep co-pay. Then I got the Explanation of Benefits and it said I owed $20 in co-pays. What was the $75? Apparently, you aren't allowed to reschedule appointments. My original appointment was Friday. We rescheduled the Tuesday before for the Tuesday after and got fined $75.

Worse is my problem with my primary care doctor, who I have been with more than 15 years and who I love. But I am thinking of leaving.

I had a CT scan Dec. 8 to make sure my lung nodules are stable. The technician said my doctor should have the results in a few days. I called my doctor and left has a message that I had the scan and to let me know when she got the results. I called again Friday and left another message. On Wednesday  Mom called and talked to someone who said they didn't have the results yet. On Thursday she called radiology and they said they'd send the scans right away. I called again Monday and left a message.  Still nothing.

And the woman who got me my current job is retiring.

Oh, and still sad and guilty about Claren.

It's not all been bad. A friend at work made me some delicious buckeyes. The next day she spotted my water bottle was leaking, fixed it and said, tell your sister, I'm looking out for you.

My niece and nephew bring me joy.

And I love Christmas music!

Saturday, December 20, 2014

Traitor

On Saturdays, I usually sleep till Mom comes over about 9:30 or 10, so when my door opened about 9:30, I figured it was Mom ... until something furry leapt on bed and started licking me.

Kenny has figured out how to push open the door, so when he gets bored, he comes in.

It was so great to have him there and play with him ... until i thought of Claren.  She can't get on the bed anymore.

I love sitting on the floor with her, but that's not something I can easily do anymore.

There is a good reason only young dogs are service dogs, and it isn't all about their work. I miss having a dog I can play with and easily pet.

Wednesday, December 17, 2014

A Mego miracle

Mego Spider-Man was not in this year's nativity. Spidey keeps me company at work, watching over me from the top of my monitor.

I was showing him to a friend who was unfamiliar with Megos. She was saying that Spidey probably curses when I leave because he got left out.

I argued that if the Toy Story movies are any indication, Spidey is living large when I leave and even happier when everyone leaves -- free to swing through the office without care.

Perhaps the Megos who should be pissed are Batman, Robin and Captain America. They are in my room but are in vehicles on shelves, so they got left out.

Spidey, on the other hand, is not only free to party every night, but my friend saw his uniform needs a quick stitch and said she'd bring in a needle and thread tomorrow.

Tuesday, December 16, 2014

A very Mego Christmas


It's been kind of a gloomy year in Matty's Toyland: no new action figures. And by new, I don't mean MOC (mint on card) or MIB (mint in box). I mean I didn't get any action figures this year. In fact, counting the nine pounds of figures I sold on eBay last month, I've had a net outflow of figures. If that isn't sad, I don't know what is.

But never fear, the Megos (and lookalikes) are here to save the day and Christmas.

For the unenlightened few, Megos are perhaps the coolest action figure made. Our (my brother and I and a friend) favorite game with them was to take some fishing line into the upstairs of Gram's house, run it from an upper story window to the ground, then slide the Megos down the fishing line. Most of them had hands that easily held the line. At some point, we decided it would be even more fun to put a tub of mud underneath the fishing line and try to make the heroes fall off the line into the mud. (Some still have mud in their crevices even now.)

Anyway, they are gathered round the "soft glow of electric sex" to fill in the nativity.

To the right of the Christmas Story lamp are the three Kings. Black Falcon is the only official Mego among the kings. He may be my favorite Mego; I think it is the boots. I am afraid I am falling vicotim to typecasting here: I needed a black king.  The Spirit is next from right. Granted few kings wear suits, but one of the first Spirit stories I read had in some Far East setting, and he was awesome. Next is Dark Phoenix, a woman so not technically a king but she is wearing regal colors, and trust me you don't want to tell her she can't be a king. Leading the kings are a few lead knights I made when I was far too young to be playing with molten lead.

Kid Flash is not at all new, but I did buy him new boots this year. Before he was wearing high heels. Can you imagine trying to run in heels? He'll be playing the part of the plucky little shepherd boy. Hulk has promised in advance to smash nothing. 

Shazam is not new either but he has been put away because she was shoeless and capeless. This year, I replaced both and brought him back. I think with that wild hair Thor is best suited to be a shepherd, which means Superman and Shazam will compete to be the angel. I envision it as a Kingdom Come-like struggle. "Shazam, shazam, shazam!" Or the Rocketeer could be the angel. What an awesome movie! If I had an action figure of his co-star Jennifer Connelly, she'd definitely be the angel. 

That leaves Green Arrow and Daredevil, more shepherds, I reckon. Green Arrow has the right weapon for a shepherd, and Daredevil would not have to worry about leaving the flock to find a lost lamb because who could sneak away from him.

Next year I will make it my solemn vow to have new figures.

I just realized the star leading everyone to Jesus could be the leg lamp or it could be me and Claren.

Here are the ones from 2007,  20082009201020112012 and 2013. These posts also have some background. And God must be amused by this because I have not been struck down yet.

Saturday, December 13, 2014

Uh-oh

My brother-in-law was unable to comply with the second of two requests I had for him yesterday when he came home.

In his defense, my plea to him was along the lines of: Can you come help me and not make fun of me/

Also in his defense, when he came in, my chair was in the bathroom, my shower chair was out in the room, and I was on the floor in the middle of the room.

Let me explain.

When I work from home, I use my phone to play music. That means I often go to the bathroom without my phone. Stupid? Yes. Yesterday I found out how stupid.

About 1:20, I went to the bathroom. I slipped getting back in my chair, so I was homeless, phoneless and on the floor of the bathroom.

Crap.

The slip was caused because my foot got caught under my char, so first things first, I moved my chair.  then, calling on my Herculean upper-body strength, I managed to stand up and sit on the toilet.

I needed to move my chair back so I could transfer to it. I did, but it nicked my foot in such a way that I slid off it again.

Sonofabitch!

I knew I didn't have it in me to pull myself up again, so I decided to get my phone.

To do that, I proposed to slide on my back over to my desk and somehow pull down my phone. I hadn't figured out how yet, but ...

To get out I needed to push my shower chair out of the way, so out it went. Then I started sliding.

Shortly after my brother-in-law got home.

I was back in my chair by 1:45.

I have already ordered a new mp3 player.  

Monday, December 8, 2014

Wow

As I went to the elevators to leave today, a woman and her boss were getting off. He is our chief technology officer, a very nice guy.  The woman is nice, too.

At my office, when you get out of the elevator on our floors, you are greeted by locked double glass doors. Our ID cards open them and entry is easy: I push the button, the door opens inward, and I scoot inside. Leaving is less easy. The door still swings inward, and it swings into the button. So I need to go up, hit the button, back up, go around the opening door and exit.

I just talked to some people about fixing the problem, so it is a known problem to the building people.

But today, the woman noticed me leaving and started explaining to her boss why it is bad.

I explained we're working on it, and he said, good, and that he would bring it up to people and that if I need anything to let him know.

Saturday, December 6, 2014

Blame it on the rain

My sister and brother-in-law got new furniture recently, which meant they were going to get rid of my old Laz-Boy recliner. Instead. I decided to get rid of my chaise and reclaim my recliner.

After about a week, I am ready to pronounce the change a success.

It's been so good in fact that today I spent maybe 30 waking minutes out of the hair.

Rainy days suck.

Thursday, December 4, 2014

Bloody Toes

It's not just falls I joke about. This morning I asked my sister to put a bandage on the bloody big toe on my left foot because it was just jealous of the bandage she had put on the right big toe yesterday.

She did, of course, and even wiped up the blood on my bathroom floor.

I am not sure what it is about winter. The skin on my feet feels paper-thin, and my legs feel more jittery. The result is my feet rake themselves on the wheelchair or the shower chair almost daily when  I transfer. And it hurts!

But I am so freaking hilarious, it hurts less.

Monday, December 1, 2014

A joking matter

Of course, I made a joke when being helped off the bathroom floor. That's what I do ... unless it is really, really bad.

It doesn't matter if it is my sister doing the helping, my brother-in-law or as it was today, my co-workers.

It also doesn't matter that it is about the last thing I wanted to do. I'd rather curse using words even my sisters don't use regularly. I'd rather cry and sob. I'd rather curl up on whatever floor I am on, damn God to hell, then wake up from this awful FA dream

I don't do any of that. I put my helpers at ease I let them know that I am OK and that helping me won't be a trying emotional experience. And by laughing and making fun of myself, I try to put myself at ease and let me know I am OK. I'm not sure I really am.

The texting for help worked well, though both helpers were out today. They got the message and called someone else to go help me.

Saturday, November 29, 2014

Mud spelled backward is Dum

My ode to sweatpants and in-laws will have to wait.

When you are stupid enough to try to drive a wheelchair through a muddy lawn, you just have to do for it. You can't turn or back up or stop.

I stopped today. My footrests were getting stuck in the ground, so I stopped to raise my chair. I'd say that was my doom, but honestly I was doomed the moment wheel hit grass.

I was just trying to get to Mom and Dad's to bathe Claren. I didn't want to go by the street because I didn't want to grab Claren' leash.

I wound up having to call my sister, who pushed and pulled for a while then got my other power chair for me to transfer to. Somehow the other chair did not get stuck. and I got to the driveway. Then, my sister drove boards under the wheels using a mini-sledgehammer. I called Dad because it killed me not to be able to help. Right as he got there, my sister managed to free the chair.

We then spent another 10 minutes hosing the wheels off.

I forgot to mention the many times I get mad at myself.

Tuesday, November 25, 2014

Angry

I have realized that a day rarely goes by without me becoming really mad about something, usually something related to FA or my stupid wheelchair.

Sometimes, they are relatively benign, like not hearing the name of the woman working with my boss. Others might be more annoying, like gong to the restroom and finding someone in the wheelchair stall, going to the other restroom on the floor and finding someone in that wheelchair stall.

Some are stupid, like getting pissed about the stupid snow in the forecast.  Others have more significance, like when I fall.

No matter what, though, they are exhausting.

Friday, November 21, 2014

'Interesting'

In The Simpsons "Bart After Dark," Bart is hanging onto a gutter when a caterpillar starts crawling on his fingers, which tickles and makes him lose his grip and fall. Right before he plummets, he says, "Help, help. I'm gonna die." But he is laughing as he says it.

I can't tell you how many times I have laughed while thinking "I'm gonna die," this morning, for instance.

I have a set of cheap plastic storage bins in my bathroom to hold my towels. The top is a shelf where I store my pills and stuff.

This morning I got out of the shower and went over near the sink and storage bins. I hadn't put my seatbelt on because I have to stand up to put on my boxers. But before I could do that I lost my balance and fell forward.

I could feel myself falling out of my chair ... until I stopped. My head somehow went in the top storage bin, beneath the shelf, keeping me from falling.

Of course, then I had to reach my phone while bent over. I called my sister, and she sent me brother-in-law, who came in, saw me, and just said, "Interesting." I agreed, and then he helped me out.


Tuesday, November 18, 2014

Crappy

Mom mentioned that Claren was antsy today and said she thought it was because Claren knew I was feeling poorly and was worried and anxious. I think Claren was just hunting for food.

I am feeling poorly. Spring would make me better ... until I realized that the warmer weather didn't fix everything. Then I'd be crappy again.

And the problem when I am crappy, I have little interest in doing things and i get annoyed too easily.

I'll survive. I'll get better. I am seeing someone Friday to see if talking helps.

Sunday, November 16, 2014

Suite: Matty Blue Eyes

In the autobiography I am writing for my application for another service dog, I say I am eager for a partner "who is not content to just snooze the day away but will drive me to do more." I think I may be asking for too much.

I was out walking Claren yesterday and listening to iTunes. Suite: Judy Blue Eyes came on, and I decided that it was probably written about me, not Stephen Stills and his break-up with Judy Collins.
It's getting to the point where I am no fun anymore ...Sometimes it hurts so badly I must cry out loud ...
I admit that cold weather calls me to hibernate, but even in warm weather  I am not energetic. I used to walk Claren in the rain and snow. Now? Forget it. I do little on weekends and don't mind at all.

Most people like weekends because they don't have to go to work. I like weekdays. I know I have to go to work. I know I might feel bad. I know I can do it, though. On weekends I have to do little, and that's what I accomplish.



Friday, November 14, 2014

Too much?

I got booed this week at work, and while they were friendly boos for the most part, a line may have been crossed.

I am reluctant to say I crossed the line, but I guess I did. I was led across, though.

On Wednesday I went to get a free flu shot at work. I was with a handful of folks from my office, and when we got there about 30 people were in line ahead of us.

I hardly had time to register this before the woman running the clinic was calling and motioning me to the front of the line. I am in the top tier of folks who ought to get flu shots, and it is possible she knew that. More likely, she was letting me engage in one of the three perks of a wheelchair life -- cutting in line. (I figure there are three but can't think of them.)

The boos and catcalls came then. In my defense, I hear poorly and speak slowly, so it would have been hard to turn her down.

But even I felt guilty going past the guy on crutches with one leg,

Tuesday, November 11, 2014

I don't want to die

I have put off writing this because it will make me feel bad. At the same time, wring is how I process things, so until I write about it, I’ll feel bad.

I recently asked my sister to tell me if I ever become too hard for them to deal with. It’s not that I have gotten appreciably worse; it’s just that having a 135-pound lump — even one who occasionally buys dinner — is no fun. Trust me, the lump isn’t having a blast either. And like most people, I have been bombarded with right-to-die stories recently and people commenting on these stories.

Someone wrote how mad it makes her that we can end our pets’ suffering but not our own. I love Claren as much as possible, but she’s a dog. She’s not a person. She’s smart, but she does not have an intellect. She’s a dog.

Someone else wrote that everyone should be able to decide when it’s time (if terminally ill). But why just terminally ill? It seems a slippery slope until anyone can decide to kill themselves.

Also, maybe not now or tomorrow but how long before someone who did kill herself is used as a line in the sand to justify killing someone who isn’t asking to die? “Well, Joe thought he had no quality or life when his lung cancer spread to his brain. well be doing Brian a favor by killing him.”

And are people like me considered selfish jerks — by others or in our own mind — because we don’t off ourselves?

Your body’s systems shut down during death. How can any self-inflicted death be dignified? You are forcing your body to give up. In sports, teams that are losing badly aren’t considered dignified if they give up. They’re dignified if they fight.

Finally, we don’t believe doctor who tell us ebola is really really hard to get, but we believe them when they say we have five months left. WTF?

My sister answered me dubiously about how hard I am to deal with: So we can put you in a home? It didn’t answer the question, but it was a good answer nonetheless.






Sunday, November 9, 2014

No problems

We hurt my brother-in-law's feelings this weekend. Well, I didn't really, but I was the cause.

My sister and niece went to Pennsylvania for a day, without telling me, so my brother-in-law and nephew went out to dinner. I ate with Mom and Dad.

Mom needed to bring my warm comforter over, but when we were leaving after dinner to walk Claren, she said, I don't want to carry it during the walk, so I'll bring it up at 10 and get you settled. I pointed out my brother-in-law would be there, but didn't argue. I mean it is easier to have Mom tuck me in. she takes off my shoes and socks and whatever.

When I told my brother-in-law Mom would be up, he started talking to the puppy: Kenny, he said, [my sister] and Grandma J don't trust me to take care  of Uncle Matt.

Then he went upstairs to put his son to bed. He came down and went to Mom and Dad's, got my comforter, put it on my bed, helped me into my chair and went to bed.

And I was fine, although I had to take off my own shoes.


Friday, November 7, 2014

Saved

The back of my chair looks like a "U." I lean against the base of the U, and two pieces some out on either side to keep me from falling over.

This morning I was teleworking and home alone. As I transferred back to my chair from the toilet when I noticed, huh, my chair is pretty far away.

Not that I could do anything about it mid-transfer.

I managed to make it to the chair, but when I leaned back, I tilted so my back hit one of the side pieces and I slid along the outside off the left side of the chair.

Somehow I didn't fall ... yet. I stayed on the edge of the seat and tried to recover. But all for naught. I finally fell.

Two seconds later, my brother-in-law walked in and helped me up.

Tuesday, November 4, 2014

It's my life and I'll drink what I want

I started drinking camomile tea over the summer because someone on the FA email list said it helps with their restless legs.

I had talked to my doctor about my restless legs, which she said wasn't the typical issue. With me, the bottoms of my feet, itch is the best word,   and moving helps relieve it for a moment. Even if it was atypical, Dr. B. was certain it could be treated with medicine. But neuro drugs aren't high on my to-do list, so I said I'd wait and see.

Hence, the alternative solutions, such as camomile.

It helped at first. I didn't like the taste, but if it kept my legs relaxed, I'd drink Guinness. So I kept drinking it.

About a  month ago, I noticed my mouth was really dry when I got up. I attributed it to the changing seasons and got a humidifier.

That didn't work, even when I turned it up so high that the towel in front of it was soaking wet the next morning.

Then my mouth started staying dry all day, very annoying.

I mentioned it to Mom at that point, and she said, I wonder if it is the camomile; that always dries my mouth out.

Needless to say the camomile was out, and that seems to have done the trick: No more dry mouth, all is good. Right?

Until my sister heard of it. She has hardly stopped mocking my decision, even if the evidence backs me up. She was talking to a niece when she found out, and they both ridiculed Mom and my decision-makiing.

And that wasn't the end.

I have been having a few drainage issues lately. My sister helped me change after the last one and told me: I know why. It's because you stopped drinking camomile.


PS: Stretching helps the restless legs.

Sunday, November 2, 2014

Shooting drilvers

At lunch at the Cheesecake Factory yesterday, this little girl kept turning in her chair to stare at me. I waved at her and she turned away. This happened a few times before I decided that the parents might not condone a stranger waving at their daughter, so I stopped.

But I recalled an important event from my childhood.

We were on our way to vacation, and my brother and I were in the way-back of the station wagon. I don't know who else was there, but if we were in the way-back, I assume siblings were in the back.

Anyway, to pass the time on our drive, we started shooting drivers with our fingers.

This one guy -- frizzy-haired and in a light blue VW Beetle, if I recall right -- started reacting to our shots, acting like we hit him and he was dying.

It was awesome. I hope I had a fraction of an impact on the girl as the guy did on me.

Thursday, October 30, 2014

Pass the milkweed and don't look while I do something

This drill.
When we were little kids, my older brother asked Mom at a restaurant to "pass the sugar and don't look while I do something."

He apparently wanted to sweeten his soft drink.

This story has become famous in Trott family lore, and just last week I basically told my sister the same thing.

I had bought some milkweed seeds that Mom and I planned on planting on Saturday, but if my sister and her husband were around, we might not get very far. They might just do it themselves.

The plan was to use this antique hand drill to make holes in the ground for the seeds because Mom's fingers could not push the seeds into the soil, and while I might have been able to, I am not allowed where the planting would be.

So on Friday, I asked my sister if they'd be around. She immediately became suspicious -- it was as if I asked her to pass the sugar. She relented when she heard we were just planting seeds. But I may be in trouble now by showing the drill.

Tuesday, October 28, 2014

Friends at my new job

I'd be lying if I said the nostalgia for my old job wasn't still bothering me, but I had my annual review today.

I have two bosses, more or less, so they were both in the review.

The man one, who is new to the agency, said that whenever she is meets with people there and she mentions me, the people are so complimentary. At which point, the other boss said, "No one should be that well-liked."

Sunday, October 26, 2014

USA TODAY in my blood

I went to a get-together of past and present folks from the USA TODAY Money section on Friday. It was awesome, and I think that is why I feel so bad.

Everyone seemed so happy to see me. No one asked about Claren ... at least not before asking about me.

It was at a loud bar, and I couldn't hear a lot. It was crowded, too, so I couldn't move easily. But neither bothered me too much. A number of people sat down and talked to me at my level, and people  came to me. It was wonderful.

I know I made the right decision to leave. I love my job and the folks I work with. A lot of the people at the party aren't at USA TODAY anymore either. I know it is very different now, too.

But ...

Saturday, October 25, 2014

Optimistic pessimist

A friend at works refers to me as so optimistic and a glass-is-half full type of person.

One could argue that she knows me poorly. 


Perhaps, though, I save my pessimism and sadness for when I am home. Which isn't fair, I realize, but ...

This afternoon, for instance, I was on the floor brushing Claren, and I just tipped over. I decided to just lie there till Mom came over in 30 minutes. As the time got nearer, I decided I should try to get up to prove I could. Only I couldn't. I tried hard and could not get up. That makes you feel like crap.

So does having to get help to change clothes because you get to the bathroom in plenty of time but can't get your pants down.

And there is more, of course. It is at times like these that optimism seems silly. 

Wednesday, October 22, 2014

Top dog

At one point during Claren's checkup, the vet said something like "Everyone here loves her... They like you, too, but they love her."

As if I didn't know. Ever since I got her, it has been clear that a awesome as Claren is the top dog. (Actually, she's the only dog. I'm a boy.)

Even with a green cone of shame, she is more popular than I am.

Apparently, she's as healthy as any old dog with a rotten liver.

Sunday, October 19, 2014

I'm a 60-minute man

OK, the song probably is not referring to how long it takes you to ride a mile on your hand trike, but it is all that kept me going on my return trip yesterday.

Normally I ride about 3 mph on the return trip. it is slightly uphill, so I am slow, I know.

But yesterday was beyond slow. A really sharp wind was gusting in my face, and it made it feel like I was biking up K2. I even got passed by a dad pushing his son who was learning now to ride a bike.

My speedometer read 1 far too frequently. In other words, one mile in 60 minutes, a 60-minute man.

Friday, October 17, 2014

Sore but proud

I am a little sore tonight. I had my first in-home physical therapy appointment today at lunch.

Appointment makes it sound more official then it was. Insurance doesn't cover ongoing therapy, so after much searching, I found a PT student to come over. We go through the exercises I got when doing PT a while back.

He was great. He said he read up on FA before hand and was going to do more before we meet again next week. He also threw in another exercise he thought would help.

It took me too long, but I finally feel like I am doing something.

Tuesday, October 14, 2014

Still compatible

My little sister and her husband have been known to brag about their compatibility scores in a wedding preparation class, like the highest the priest had seen or something.

But that was 13 years ago. Before two kids; hockey, lacrosse, soccer and flag football games; an awesome housemate ... Surely, things have changed.

Or not.

I was in my shower chair drying off yesterday when I heard a big bang. After I recovered, which took a while and made me thankful for my seatbelt, I called in my sister.

My light had fallen off the wall. "What did you do?" she asked.

A little later, she called her husband in to see what happened: "What did you do, Matty?"

Sunday, October 12, 2014

Today's Tom Sawyer

A persimmon tree grows outside my window.

The fruit looks good. If I were a bird or squirrel, I'd eat it. But nothing eats the persimmons. The fruits grow and weigh down the tree. Last week, a big hunk of the tree broke off.

Today was not a great day weather-wise. I didn't really want to go for a ride, and I didn't have swimming. Mom and I decided we would cut up and pick up the branch.

I got in my old chair, so if my wheels got persimmon-y, it would be no big deal. And we went out by the branch.

We worked for maybe a minute before my sister came over to help, saying something like she was not going to let her "crippled brother and 80-year-old mother" clean up the yard. Mom is 75. Then my brother-in-law came out. He asked me if I really wanted to be doing this. I assured him I did, so he started helping my sister. Then he started using the clippers, and his little power saw came out.

I sat back and supervised and laughed at how it was like Tom Sawyer painting the fence. Except it was guilt that did it and I wasn't trying.

Friday, October 10, 2014

MetroAccess, take a bow

Wow, MetroAcces. You have done it again, and honestly, I am shocked.

With all the mind-numbingly frustrating things you have done in the past -- late trips, trips that continued right past my destination to drop another passenger off, operators who regularly told me my ride was five minutes away only to have it show up an hour later and of course, the requirement to renew my membership every three years even though my disability is permanent -- you have managed to top yourself and really piss me off.

I teleworked today because I had to go to MetroAccess headquarters to renew my license. I did not want to go to work because last time I tried being picked up at work and dropped off at home, I got dropped off back at work. It was survivable in that the old location was near the subway, but I was not willing to tempt fate in our new location. Because I teleworked, I was ineligible to take advantage of the two-hour early dismissal at work.

Mom does my phone dealings with them and yesterday got a reminder that I'd be picked up at 12:30 for a 2:30 appointment. (It would take probably 20 minutes to get there but whatever.) She called this morning and got the normal recording, so we were a go.

Except we weren't.

At 1:15, Mom called, and the operator told her the building was closed by a maintenance issue. This same issue caused them to close yesterday, so it was not a last-minute emergency. The operator told Mom that they had not had time to call us yet to let us know. Their phones open at 8, so that means they had five hours. Even if they only have one operator and each call takes five minutes, they could have called 60 people.

I was so mad, I took sick leave for the rest of the afternoon and went to bed.

In addition to ruining my day and making me do this again, they cost me two hours of pay.

Nice job, MetroAccess.

Thursday, October 9, 2014

Tanks but no tanks

A friend of mine suggested I start a kickstarter campaign to get a tank chair.

I definitely like the idea of Matt Trott going viral, and with the tank chair I could be Bonebreaker at the next Awesome Con. How cool would that be?

But I am not sure I like the idea of people buying me essentially a cool toy. And it is one thing to want to climb the Alps like the Von Trapps when I am in a chair and know it is impossible. But if I had a way to do it and just couldn't get there, that would be awful. Not that I want to climb the Alps, that was just what popped into my head.

Tuesday, October 7, 2014

God says umm

As far as theological conversations go, it was not impressive.

Of course, I am quite sure I was handling both sides of the chat.

When, I asked, will you stop hurting me? It wasn't that I wad particularly pained at the moment. I was more just really annoyed. I had been outside in a messy area in our yard. I wanted to pick it up a bit, but had to stop because I kept getting stuck.

God (me) replied, "Oh, but I am not hurting you."

Fine, I answered. when will you start doing something to end the hurt?

Umm.

Sunday, October 5, 2014

Don't look

I told a friend that I have a bright red wheelchair because you always stand out anyway in a chair, so why not really stand out.

I was quite obviously on display during our fire alarm last week.

I was the only wheelchair user to use the evac chair. Everyone saw me. I felt very conspicuous.

I guess it is better to be a spectacle than to burn, but just barely.

Friday, October 3, 2014

What a sister!

My little sister feels that she is treated poorly by this blog. I fully disagree, but I would like to note that she and her husband are really the only people who ever make fun of me, so even if it were true, I'd be totally justified.

But, no, I am not going to be mean. Just the opposite, I will laud her.

The past three mornings I have had to call her shortly after my alarm went off. The first two times I fell getting out of bed. (Note to self: Find a better way to get up.) She came down right away to help me. She doesn't even wait to see what I need. She answers her phone: "I'll be right there," and she is!

Well, except today. She sent her husband. I hadn't fallen, though, I just could not find my light switch.  We found it.

My point is: She is great; just don't ask her  to make lemonade chicken.

Wednesday, October 1, 2014

Take that, Auto-Flush

I went to the bathroom before I left work last night, and the toilet did not flush on me! They had made it a manual-flush toilet.

Lord knows how many diseases I have been exposed to, probably I'll come down with Jumping Frenchmen of Maine, which may be my new favorite disease. Kuru is still fun, but you get that from eating human brains, not from nasty contact with sewer water. I used to use Ebola, but with Ebolans in the United States, as a self-respecting hypochondriac I can no longer joke about getting Ebola. In fact, just writing about it may have exposed me.

All right, maybe I won't come down with some odd disease. Well, other than the one I have.  But it was still gross to be sitting on the toilet, have it flush and get water all over your butt. It was too much of a problem to block the flush sensor every time, so I asked to have it made manual-flush.

But wait, the main symptom of  Jumping Frenchmen is an an unusually extreme startle reaction. Oh crap, I already have it, don't I?

Monday, September 29, 2014

Worst Night Ever

I went swimming  yesterday, so I took Advil before getting into bed. It did keep me from being sore but not from having crazy restless legs.

My legs kept me up past 11. Then other issues took center stage.

At 1:30, I woke up because my bladder was full.

At 2:30, it was something else but I forget what.

At 3:30, I was crazy thirsty. I polished off the water I keep at my bedside, then somehow managed to get the bottle in my wheelchair bag.

At 4:30, I needed to get rid of all the water i drank.

The worst was still to come.

I don't recall waking up at 5:30, but I started having a dream. We were at a big family gathering. There was a movie out with revenge or vengeance in the title, and everyone kept asking me about it.

I couldn't figure out why, and when I asked, Mom said something about how it summed up my life. Now I was really confused. The Dream Matt was the same as I am. I don't live a vengeance-filled life, although I would not have minded if the two maintenance workers I saw using a disabled parking pass found themselves in chairs.

I asked again, and Mom laughed and repeated what she said before. But then my uncle and godfather said, "Well, it's like this ..." And my alarm went off.

Friday, September 26, 2014

Teleworking is tough

I worked from home today.

 I try to telework on Thursdays, but yesterday was more evac chair training, so I went in for that.

My little sister gets annoyed with me when I go into the office on telework days and accuses me off trying to show how tough I am.

Teleworking is easier in some respects, but actually I don't do it more because in many ways it is harder.

The evac chair training provides a good example. As I sat through the training, half of me thought, "Wow, it is awesome that 20-some people are willing to learn how to help people like me."

The other half thought, "Holy spit, it is hard to be in a wheelchair." It then devolved into,"I should never leave home, I am trouble," etc. All depressing stuff.

But I didn't cry. No. There's no crying at work.

Not so when I telework.

At the office people distract me from feeling bad, emotionally and physically.

Not so when I telework.

I go to the office not to be tough but to escape.

Wednesday, September 24, 2014

Falling apart

Like many 43-year-olds, my body is not as awesome as it once was. Unlike most 43-year-olds, though, those deficiencies threaten me.

I can't say for sure that my sore shoulder caused me to fall this morning. But my shoulder does hurt and  I did fall.

To survive FA, I need to be at the top of my game. But at 43, who is at their peak?

Tuesday, September 23, 2014

Other than that, how was the play, Mrs. Lincoln

Hey, Matt, how was work?

Not bad. Got a bunch of stuff done, have a bunch to do, of course. But it's all good.

Oh yeah, and I ran over my boss.

Yup.

If the halls in the new office were streets, I'd have been on a main street, just bopping along. She came out of a side street, and I plowed right into her.

She said she was OK. But I still feel like a massive jerk.

Sunday, September 21, 2014

Some people are OK

More than one person, using various modes of transportation, have asked me if I needed help while riding, so I know I don't look super-suave or anything.

It is usually on the return trip to the house when I am riding really slowly because the bike trail is real modestly uphill on the ride back.

Yesterday, a biker slowed as he passed and asked if I was OK. We then had a little chat about riding. Or when I got home today, a neighbor asked if I wanted help up the driveway, which I need. She did, despite the two dogs she was walking.

My point, I guess, is that I seem to stand out, which is why today was a bit of a shock. I'm not sure why it really annoyed me, though.

I was on my way home and was crossing Lincoln Avenue at Oak Street. It is not a smooth intersection, and you ride uphill to the middle of the street, then downhill.

It is a four-way stop, but to give myself extra time, I wait till no cars are around. Today, though, a car showed up right as I started across. Normally, that means they just have to wait while a really slow hand-cyclist crosses the street.

Today, I got stuck and started to roll backward. The brakes locked in before long, but before I could start across again, the car just went around me.

The neighbor kept me from hating people today. (So did the other neighbor who cleaned the dog poop off my wheelchair.)

Thursday, September 18, 2014

Bad wheelchair

I haven't written about my wheelchair lately, and I hope that doesn't create the impression it is acceptable. No, it is still a poorly made piece of crap.

The wheelchair vendor tried to improve it, but no luck.

Twice this week, I have found myself in the grass next to the sidewalk at work because the right side of the chair has gotten hung up on a bump in the sidewalk while the left side has handled said bump fine. Granted, I have been going fast on the sidewalk but actually not too fast. I cut my speed after th left side caught a few weeks ago and almost sent me off the curb.

That's not all, of course. A fender, which was loose for a while, came off. The fenders come off fairly easy because they are at a level where they catch on things and they are held in place by just the pressure of several screws, meaning the fenders have no screw hole but a U-shaped area that sits behind a screw.

As easy as it comes off, it takes a pro an hour to put it back. The entire wheel must be removed first.

Oh well, each day is a day closer to getting a new chair.

Sunday, September 14, 2014

'I can't believe you wore lobster pants on a bike ride'

Believe it, dear sister!

I even did with malice aforethought. I got up this morning and thought, "Screw it, I'm riding like this.' I mean it is not really any sillier than some of the biking outfits people wear.

It isn't, but that is not the real reason I wore the lobster pants. I did it because changing clothes is the bane of my existence. Or rather it is one of my many banes -- stairs, jerks, Kanye West ...

It is just a freaking pain. I have to stand up and bend down. Pull things up, and take off my glasses to get my shirt on.  It takes way longer than it does for people not in wheelchairs and frankly, I don't have time for it.

That's why I HATE dressing up. I am fairly certain buttons and ties are just a way for the (temporarily able-bodied) Man to keep me down.
Just in case you could not see the little beggars.

My older sister was having a party at a fancy restaurant, which required a collared shirt. I argued with anyone who'd listen that I should be able to wear a pullover shirt with a banded collar. But no, I had to wear a stupid button-down, which means I need to get someone to button my shirt and tuck it in.

I know all people in chairs don't think this way. My brother is always dressing up.

But me? Give me one outfit that I can sleep in and wear until I shower. Then I switch to Outfit 2. Neither has to include lobster pants, but lobsters are pretty stylish.

Friday, September 12, 2014

I did not fall

Early this morning, before leaving for work, I worried I was going to fall in the bathroom at worr
When I got home, not having fallen, I took a short nap and then planned to head down to Mom and Dad's with my niece, who I was allegedly babysitting. Notice the word planned. We did get there; it just took a little while.

I got up, and as I transferred to my chair, my feet got tangled. I was still holding on tightly to my bedside stripper pole, so I didn't fall. But I couldn't get my feet straightened.

I called my niece, who is 11. She came into my room and without a second thought grabbed me around the waist and started heaving. She is a tiny girl but apparently wiry because she was lifting me a little.

I told her instead to just fix my feet so she did. And I finally got my footing, just in time for Mr. Crazy Pants, aka Kenny the puppy, to leap onto my bed and start licking my glasses.

Once again, I did not fall, though my knees buckled and I swung on the pole.

Again, my niece came to my rescue. She drive my chair close enough so I could just kind of collapse into it.

Then we went to dinner.

Wednesday, September 10, 2014

Embarrassed?

It is hard to claim I am embarrassed by my elimination situation (i.e. peeing and pooping) or by things a wheelchair makes mighty inconvenient (i.e. everything). I write about these things all the time.

But it is one thing to write about them or discuss them with friends or family. It is another thing to show people at work the downsides of the new building.

It is not a ton of things, and there's no deal-breaker. But it is little things that weigh you down when faced with a number of them.

I was pointing the faults out, so they could be fixed. And I think they will be.  But it is a strain. The most amusing part: When I took someone into the restroom to show him the tightness of the wheelchair stall -- only to have it occupied by a non-wheelchair user.

Monday, September 8, 2014

The real world -- Falls Church

That MTV show -- The Real World -- always annoyed me. It wasn't real.

I  have come to the conclusion that I don't live in the real world. Maybe once, but no longer.

All I have to do is take care of myself, which is, I grant you, a big-ass job. Mom said I have to babysit sometimes, but that usually just means when I nap, a child is in the house with me.

The only bills I pay are credit cards with my spending. I do pay a slice of house bills, but it  is just deducted from my account.

My biggest dilemma (except for existential ones) is whether to nap on the bed or the chaise.

I read comics.

Someone at work asked me what I had for lunch. I told her PB&J, and she said, how old are you? She didn't even know Mom and Dad makes my lunch. I wonder if I should ask them to start making me real-world, adult lunches?

Nah.

Tuesday, September 2, 2014

Third time is the charm. Lucky me

The first time I got up last night, one of my shoes fell off. I made it fine to the bathroom and put on a slipper just to be careful.

The second time I managed to keep both shoes on, but it was 5:35 when I got back to bed. I debated whether to get back in bed as my alarm would go off in about 40 minutes. I did.

Mistake.

I got up with my alarm and was transferring when Claren caught my eye for a second, but that was enough. I spun to the floor. I was unhurt, just annoyed.

I could not easily reach my phone, so I persuaded Claren to bark, but that only sometimes works. Our soundproofing really rocks. Next, I swung around my pole on the floor and called my sister. My brother-in-law actually came and helped me up.

To be honest, when it is my brother-in-law, helped is the wrong word. I do nothing. He lifts me up.

Next time I am going to work early.

Sunday, August 31, 2014

With great power comes great responsibility ... and captioning

I had my evening all planned. Everyone else was going out, and Fios had The Amazing Spider-Man 2 available for rent.

No brother-in-law or sister to call Spidey a wimp. What could go wrong?

Well, if, for instance, the rental screen said CC on it and there wasn't closed  captioning, that would be bad. But, come on, what are the chances of that. I mean sure, it happened last week, too, but surely that was a fluke. A company would not advertise captioning that wasn't available.

Except that it wasn't available on Spider-Man. It said it was. This is now the second movie I have been unable to watch. It seems to be movies listed as "early release." So apparently, people who are hard of hearing and miss a movie in theaters need to wait to see it. Nice.

Friday, August 29, 2014

The madness of King Matt

My sister and one of my 21-year-old nieces are mad at me.  I am mad at me, too, but not for the same reason. Stupid eyeballs.

About a year ago, I got new glasses. I was surprised because they were a significantly different prescription -- before that, my eyes hadn't changed in a while -- but whatever.

The glasses place warned me that the frames I picked out might not work with my eyes -- astigmatism, I think -- but I liked them so we tried them.

My eyes worked OK on their own, but they did not cooperate well. If I shut one eye, I saw fine, but I often saw two images, one with each eye.

I went back to the store and got new frames to fit me properly, and as I recall it was a better fit. Maybe not perfect, but when does someone with FA find perfection in anything body-related?

I figured I needed time to adapt to the new prescription, and anyway it was fine on a computer.

This went on for a while and didn't really get better. I began talking with Mom about seeing someone, maybe a neuro-ophthamologist back in the winter, but I was still dealing with my stupid bladder.

Mainly, though, I dragged my feet because I didn't really want someone to tell me I was going blind. (It has actually happened before -- a doctor wrote that a spot on my eye was on the wrong eye, and when he saw the same spot on the other eye he thought things were just falling apart.)  Problems with your eyes are not that odd with FA.

I kept getting adjustments on my glasses and cleaning them because both helped, but I never told the glasses place the problem.

I went to an ophthalmologist Wednesday, and he quickly noticed the problem: The prescription I got a year earlier was wrong. It was too strong in one eye.

My niece got mad at me when she learned I waited a year to deal with not being able to see.

My sister got mad the next day after learning I paid the glasses store for replacement glasses.

I didn't think it was their fault. It was the fault of the Independent Doctor of Optometry, who granted operates out of their store.

And they didn't charge me full price. For my daily glasses, I paid just $30. For my sunglasses, I paid regular price. But they'll be new frames and all.

Mostly, I am mad I was scared of going blind. And I am mad I stayed quiet. A tiny part of me is mad my sister is right.


Wednesday, August 27, 2014

Copper is out, and Legends is on thin ice

Since I am not using the subway these days, I need something new to complain about, and the winner is: bad captions, especially on On Demand shows.

I don't mean like a word or two being changed in the final edit but not in the captioning. That used to happen in The X-Files a lot.

No, for reasons unknown to me, several shows I have tried enjoying On Demand have been nigh on unwatchable because they caption only every fifth line or so.

Last night it was TNT's Legends. Similar issues on The Last Ship.

I had to give up on BBC America's Copper because I could not follow it at all. And it was a fun show.

Am I not supposed to use captions On Demand?

Wednesday, August 20, 2014

Just like the polar bear

Everyone knows that climate change is threatening polar bears -- melting the sea ice they need. But it is also seriously effing me up.

I expect to be sad and depressed when summer ends and fall begins. This cool, cruel summer, though, which everyone but me and Mom think is great, has sparked the depression early.

At least I assume that is why I want to smack someone, cry or both these days.

Saturday, August 16, 2014

Unexpected help

I think I need to rethink how I get out of bed --I wind up on the floor too often.

It happened again Friday after my nap. No one heard my first call for help, but my niece heard the second. 

She came in and said, do you want me to move the chair out of your way?

Yeah, I said, so she did. I was still pretty stuck, so she said, do you want help?

Again, I said yeah, assuming she'd go get a parent.

Instead, my skinny-as-they-come niece grabbed me under my arms.

She didn't get me up and went and got her dad, but in her defense, I was laughing and so surprised I was no help.

Thursday, August 14, 2014

Slept through the night

I was a little cocky Wednesday morning. I had just slept through the night for the first time in I don't know how long. No needing to relieve myself, no itching and jumpy feet. I just slept. So yeah, I felt good.

And then I fell getting out of bed.

Just once, it would be nice to have my cocky justified.

Tuesday, August 12, 2014

The horror

On Friday, a friend was filming my hands and computer screen, so she moved things on my desk out of the shot (although she left Mego Spider-Man hanging over the computer screen). One of the things she moved was my water bottle, which she actually moved to a shelf I can't reach.

I forgot to ask for it back right away, and she went off to another job. I asked her next time I saw her to stop by my desk when she had a chance. I left shortly after that, though, planning to just get my bottle Monday.

On Monday, as I wandered down the hall, I felt a tap on my shoulder and my friend asked what I wanted.

She was horrified when I told her. She led the way back to my desk, got my bottle, then held out her wrist for me to slap (I lamely missed). She stopped by my desk several other times to apologize and make sure everything else was back where she moved it from. She also told me sternly that if such a thing happens again, I am not to ask her to stop by sometime. I am instead to tell her forcefully to come over and fix things NOW.

It was just a water bottle, but it did make me feel good. It made me sad, too.

I work for a progressive agency that makes hiring and retention of people with disabilities a priority. It has never turned down any request I have had and has frequently done more than I asked for.

But I am pretty sure no one is horrified by the really big couch they installed on Monday that really cuts down an open path (A boss was pretty annoyed by the couch for many reasons, including its size. I gave him my two cents as more evidence it is bad).

And I doubt I will engender much horror when I complain about the toilet-seat covers. They put the dispenser for the sanitary covers in the most convenient spot for them, the stall wall next to the toilet. Any other place would have meant drilling into a real wall. The problem is, though, I lean on the stall wall to stand. Now, I lean against the edge of the dispenser. I don't think it is dangerous, just uncomfortable.

I am not alone at work. I have plenty of advocates, and all the time I gain new ones or find ones who have been advocating without me knowing it. One co-worker moved the big couch as out of the way as possible. I passed a woman with a clipboard in the hall. She asked how easy it is to get in and out of the office and took notes as I showed her.

That is what I need to focus on.

Sunday, August 10, 2014

Claren does not want a little brother or sister

Claren likes most other dogs, except for Kenny, the puppy we live with, and this weekend convinced me that I will not get another dog till Claren is no longer around.

My sister's family went away for the weekend, so it was just me and the dogs. Yes, and Mom and Dad to care for us all, but I was often alone with the dogs. Claren was more hang-dog than usual, acting pathetic when I played with Kenny.

A service-dog friend has been trying to persuade me to get another dog while Claren is around. Our dog was relieved, she says, which proves that dogs are as different from each other as people.

I am sure I am not ready for another dog, not yet. Claren's patheticness gives me another excuse.

Friday, August 8, 2014

Thumbs down

I had mixed feelings when I first saw the bathroom in the new building, and after two weeks I am not a fan.

It is not real open -- I have knocked to tiles off the wall already because I have hit the walls. In my defense, I don't think they were attached that well.

I recognized that tightness on my first look and noted that the tight quarters included the wheelchair stall, which is smaller than other wheelchair stalls. I fit fine -- there is no extra room. Maybe that is a good thing, keeping me from falling. Well, actually, it hasn't kept me from falling, but I have been able to pick myself up. So thanks?

While I disliked the loss of maneuverability right away, I was sold on the number of stalls -- five total. Surely with all the options, no one except a wheelchair user or someone needing the grab bars would use the wheelchair stall. The close quarters of the stall also made me optimistic. I know big guys use the bigger stalls, but why use the narrower one?

I am stupid.

I watched the other morning a guy go straight into the wheelchair stall. He was not big, not in a chair and his job suggests he has no physical infirmities.

So the upshot is a tight space where people who can fit elsewhere still use the wheelchair stall.

And don't get me started on the auto-flush.

Tuesday, August 5, 2014

That birthday last week? Apparently, I am 10

Not to brag, but I am good at embarrassing myself. I don't need my FA to help, but it does and I totally blame this one on my disability.

I was filling up my water bottle at work today. We have a handy filtered water dispenser, but it is hard for me to reach and to keep the button pushed.

A friend was washing something at the sink nearby, so I asked for her help. She said sure and finished washing, put her stuff down and filed my bottle.

She then picked up her stuff and just to make conversation, I said, what's that? XXX

My pumps, she said.

AHHHHH! Stupid FA keeping me from filling my own bottle.

At this point, I am laughing and ready to go roll into traffic. I knew she had a baby and I saw things that looked like funnels. She works on multimedia stuff, so I assumed it was a funnel for pouring chemicals. But only artsy-fartsy people still use a darkroom. AHHHHH!

She shrugged and said, it is what it is, which of course, embarrassed me more. What am I, 10 years old?

For those wondering about the XXX, it was at that point in the retelling that my sister said, was it a breast pump? She and Mom then cracked up. I don't know what that says about me or my sister. She's like Radar O'Reilly.  I hadn't even got to the funnel description, and she knew.

Monday, August 4, 2014

Mr. Post-it

I thought I was so smart.

Tired of getting my bottom splashed repeatedly by the auto flush toilets at work, I got a pack of post-its.  My plan was to use the Post-its to block the toilet eye and thus the flush.

But it's not that easy to either get the Post-its out of my pouch or affix them to the toilet. And as far as retrieving the note post use, I am not just failing. My average is somewhere around 33%, with notes in the toilet or other stall. (And yes, I considered writing post poop, but I use them post pee, too.)

I think I need to coat myself in Post-its, and just pull one off when needed.

I may be on to something: That would make it easier to use the toilet, too, nothing to pull up or down.

Wednesday, July 30, 2014

Settling in

I have been in my new office for three days, and I haven't been to Toys R Us yet! I have, however, broken some tile in the bathroom. Actually, I did that six hours into the first day.

It was pretty poorly applied tile if you ask me. I bumped into it, and it came off the wall, hit the floor and broke. A friend high-fived me for getting the first break out of the way.

There have been a few other glitches, too, but mostly it is good.

A few doors didn't open when I pushed the button, but that seems fixed. And they removed the doors without buttons that they were just propping open.

So door issues seem solved. I won't swear I won't break a door because only one side of a double door opens and that is narrow. But that is on purpose, so we'll just have to see, and be careful.

The big concern was lack of cell phone service in the building. They are fixing this, but until then gave me a walkie-talkie to call for help if needed.

The final problem has not been building-related. The van broke down Monday, so I have found a bus route to get me home, and used cabs and MetroAccess to get in.

I think I deserve a trip to Toys R Us for all that.

Sunday, July 27, 2014

Moving

As I packed up my office last week, it occurred to me that this is the second time an employer, after I had been there a few years, moved from a pedestrian- and subway-friendly location to a spot that was not.

After two and a half years, USA TODAY moved from Rosslyn to Tyson's. It was OK for me.

Now, after just under three years, I am moving from Ballston to Bailey's Crossroads.

That means I should not be worried about tomorrow, the first day at the new office. I am.

I toured a few weeks ago and had some accessibility issues. I detailed them to higher-ups, so hopefully they are fixed.

I know, though, that there will likely be at least one logistical hurdle. It is new construction -- how can there not be?

A woman I work with calls me optimistic about the building because  I say things like: it'll work. Expecting obstacles does not seem optimistic.

I think I am being pragmatic. It'll work because I will make it work. And it doesn't hurt that the new office is next door to a Toys R Us.

Friday, July 25, 2014

Accessible bathroom quiz

Quick quiz: The people who design and build accessible bathrooms:

  1. Have heard of wheelchairs but believe they are legends, much like the fountain of youth.
  2. Know wheelchairs exist but are certain that no one uses them anymore.
  3. Have seen able-bodied actors pretend to be disabled on TV, so they are sure that anyone who uses a wheelchair can, like Peter Brady on his wedding day, get up and walk if they really want to.
  4. Have read all the required code, so feel they are experts.
  5. Know that people use chairs, have tried a chair themselves but know that they are able to use body parts normal people in chairs cannot, so before setting anything in stone, bring in someone who is really in a chair to test the room.


I can tell you which one it isn’t.

Here in the accessible room at the hotel in Virginia Beach, I can't decide which it is.

There are plenty of bars here near the toilet, great.

Not so great: All the bars, and the wall, end before the front of the toilet, so you can sit down OK. I can stand up, too. I can’t however, pull my pants up or clean myself off.

It’s a roll-in shower, great.

Not so great: Getting a shower chair in or out is like parallel parking a limo. I went back and forth countless times. This is made all the harder by a big old lip on the shower.

My knees fit under the sink, great.

Not so great: You have to line up properly to avoid the pipes, but it is hard to line up properly in the dark, which is what you have to do to reach the light.


Ugh.

Thursday, July 24, 2014

Multisex accessibility

I have not  been to school recently, so maybe something has changed. At the restaurant here in Virginia Beach, I saw this on the door:
“BATHROOMS
Unisex in dining area
Accessible in bar area.”


When did accessible become the opposite of unisex. Are they calling people who use accessible bathrooms bisexual or maybe hermaphrodites?

Monday, July 21, 2014

I skipped high school

My 25th high school reunion is this year. The person on FaceBook who invited me said she hoped to see me there. I wanted to say why, not because I have no self-respect but because I am pretty sure I never spoke to the gal who invited me.

She wasn't mean; we just were never in the same classes that I can think of.

I am not sure what it would take me to go to a high school reunion. I am not blameless, but that was one of the worst times in my life.  I was invited to no parties. The only time I went to someone's house was to do a school project.

I can blame FA in retrospect, subconsciously coming to terms with its devastation. I probably should be glad to be alive.

From now on, I am going to tell people I never went to high school.

Friday, July 18, 2014

JERKS

My older sister said she stopped commenting on my blog because her main comment is usually PEOPLE ARE SUCH JERKS or something.

But they are! Some of them anyway, and most of them use the subway when I do.

For instance:


  • If you are going to ignore the request on the subway to move out of the doorways, then at least glance out the door to make sure you aren't standing in someone's way.


I tried to get on a train yesterday, and this hulk stood in the doorway, with his back to the door. It would have been better if he was the Hulk because then I wouldn't have worried about running him down. A wheelchair would not hurt the Hulk. But this was just a big "puny human."

The door-closing warning started to sound and so I slid on, expecting to hit him or the other side of the door.

Fortunately for us both, I threaded that needle, baby. But that wasn't the end of the jerkiness.


  • If you are going to ignore the request to give priority to disabled people and the elderly on the elevator and get on first, you ought not to then get off first an not hold the elevator door open for the ONE person who actually needs it.
Seriously.

I was waiting for the elevator, and it came. I started getting on, and first one gal, then a second person, got on before me. 

You might think that would mean I'd get off before them then, but you'd be wrong. Four people get on the elevator with me. All of them got off before, and none even thought about holding the door open while I turned around and got off.

I stuck my hand in the door that was about a foot open. I know that is sort of stupid, but I was a bit pissed and maybe not thinking straight. 

The elevator opened I got off fine. All was good, no thanks to the jerks.

Wednesday, July 16, 2014

My heart hurts

I am having chest pains.

OK, not that kind of chest pains. It is on the opposite side than my heart and it feels like a bruise or muscle thing.

I am sure it is a bruise on my ribs or a tweak of my fierce pecs, but here are the problems:


  •  I can't recall doing anything to it. That doesn't mean I didn't hurt myself. I use my arms so much. And I am constantly twisting and slipping and stretching.
  • I can't give my arm time off to get better either. I need them to do everything I do.
And that makes my heart hurt.

Saturday, July 12, 2014

Not my blood

Should I stay till you are done?

No, Mom, I'll be fine.

Of course, I wasn't fine. I was transferring back to my chair from the toilet and my foot got stuck. i made the transfer OK, then tried to pull my foot free. Instead, I pulled myself off my chair. 

I tried getting up, but my feet kept sliding. I decided that help would make it easier, so I called Mom to tell her I was a liar who did need help.

When she came up, I was lying on the floor, and when I saw her face, I laughed, I was fine, I told her. I had just lid down because my feet kept sliding.

She held my feet, and I got on the toilet fine. I then had to wait while Mom bandaged up her arm that got cut helping me.

I made Mom bleed! I am definitely going to hell.

I was fine after that, and Mom claims her arm is fine. I know I am doomed, though.

Monday, July 7, 2014

I see my future: No more AMC Theatres for captioning

I got out early on Thursday, so I forced myself to go see X-Men: Days of Future Past.

I say "forced" not because I didn't want to see it -- and it was awesome, though one sister might start crying if she sees it. But when the alternative is going home and taking a nap, I have to force myself to do anything. Plus, I had to ride three subway stops to get to the theater.

I was sure I'd wind up not going, so I didn't ask anyone to join me.

But I did it!

It was, as I said, great, and I find it quite interesting to see what the screen writers choose to use from the comic and what they ignore.

After seeing it, though, I decided I am not going to AMC Theatres again.  It's Regal Cinemas for me.

AMC does have captions. That is wonderful. But the caption device sits atop a gooseneck support that fits in the drink holder. You adjust it so you can see the captions and the movie.

I don't have a drink holder, so I have to use the one on the movie seat next to me. This means the gooseneck isn't really tall enough for me in the wheelchair. I wind up reading the captions, then looking at the screen and vice versa.

At Regal, you get the awesome caption glasses. You can be a wheelchair user who uses captions.

Saturday, July 5, 2014

Another why

Every Saturday morning, I read Gene Weingarten's Sunday column in the Washington Post Magazine.

Yes, I read it early. Sue me.

Tomorrow's column claims insecurity is good for columnists. As an example, he points that after he won a Pulitzer, he worries because the award-winning story included the phrase "history of prior neglect."

Granted, that is a silly phrase, but you want insecurity, allow me.

Some friends brought their new baby over and were like, we really want her to know her Uncle Matt.

Awesome, I said. What I  was thinking was, Why?

Wednesday, July 2, 2014

Accommodating myself

My little sister and her family left on vacation today, so I am going to talk about her.

She gets visibly frustrated with me because I do not demand more reasonable accommodations, like today.

We had training on evac chairs we'll use in our new building.  I did not really want to be transferred to a stair chair and slid down steps, especially not at 8 in the morning.  But training is no good if people don't know what it is really like to transfer someone who can't help.

 I decided to get up an hour earlier than normal to eat breakfast at home so I'd have plenty of time to evacuate my innards before I trained to evacuate the building.

This annoyed my sister. She thought that I should have said, "I'll train, but at a later time." She thinks I don't request accommodations because I am trying to prove my toughness.

I wish it were that.

Really, it just doesn't occur to me. With today's training, I saw a clear solution and that was getting up early. I didn't really want to, but there is no real reason not to. Other than being tired, there were no bad effects.

If I can accommodate myself, why ask others to do it?

Tuesday, July 1, 2014

I knew this would happen

Claren has not had a does of oral steroids in years. Her itching has always responded to less-drastic measures.

But I got a course of steroids today because nothing is really working. She opens up new cuts on herself daily.

When I got home from the vet, it occurred to me: She really is dying. I'd never agree to -- and the vet would not suggest -- something that might make her feel better but might hurt her eventually.

But now, let's just make her comfortable for however long is left... which is why my shower chair is sticking out into my room. Because she is also wearing a big old cone, I needed to give her extra room to get to the shower -- her new sleeping place.


Saturday, June 28, 2014

Super, awesome, fun Friday OR Blood on the wainscoting

You ever feel life you are in a rut, doing the same thing day after day after day?

I have the solution: Get Friedreich's ataxia. It is a never-boring whirlwind.

Maybe one day everything works properly and you even get a little cocky. I can do this, you think.

Then your urinal leaks at 3 a.m. so you have to call your sister. But that is not the only excitement, oh no.

You wake up normally at 6:20 a.m. and roll out of bed. I mean that literally. You roll too far and slip to the floor. Your wheelchair is plugged in, so that means you can't move it. To increase the excitement, your legs slide forward into your laundry basket.

Your toes find the holes in the laundry basket and several are soon skinless. Blood is everywhere, including the trim of the wall. So, you figure, goddammit, I better call my sister again.

Of course, the phone is still on the bed, next to the chair that won't move unless you unplug the charger. But that would be harder to do than just stretching and pulling on the bed sheet to grab the phone.

Your sister comes when called, helps you back onto the bed, puts your bloody foot onto a towel and says, just stay there. She then calls Mom to come help.

They clean and bandage the big toe with three band-aids. Thanks to your offing stupid involuntary reflexes, one has to keep you from kicking them, while the other does the bandaging.

It gets boring after that. Thank god.

Wednesday, June 25, 2014

Missing my girl

My agency is moving, so I was at a meeting the other day with a woman in a chair. She had a service dog.

It was the first meeting where it was not my dog under the table.

I am also seeing Claren in almost anything light that is under my desk or table.

She is here when I get home, but I miss her at work.

Monday, June 23, 2014

Church thoughts

Yesterday was Mom's first official day as eucharistic minister, so my sister, nephew and I went to St. James, the church of my youth, to witness it.

It was, I think, my first visit to St. James since Gram died. Still smelled the same -- incensey and musty -- like a church should. It all looked the same, except the pews had less wax stains on them.

It felt good to be back, then Mass started. Actually, my chief problem is not the ideology and the fact that some people there would prefer to undo Vatican 2 (more than they have), it's the sound system. I literally heard one Jesus and a few snatches of the Creed, and that was about it.

Instead, I stared at the statue of Jesus near me and thought.

Almost no part of me, at even the worst times, doubts God exists. Too much had to happen just so to enable life, and it did happen. I am sure something started the process of life, something gave the right push to the various atoms into the right forms.

But then I am stuck because try as I might I cannot say God is a loving father. And it didn't help that I did hear one other phrase: "Lord I am not worthy to receive you, but only say the word and I shall be healed."

So God can wipe away sin with a word, but he cannot, or chooses not to, wipe away disease, broken bodies and monumental evil? That is hard for me to swallow.

I'll even make it easy: God does not need to fix everything. Any manmade fault is not his business. That means idiots who kill or lead others to are not God's problem. Someone injured in a car accident -- God does not need to fix. An illness that comes after years of mistreating one's body -- God gets a pass.

BUT people who are born sick? People who never had God's gift of having life and having it to the full? I totally blame God.

And don't give me that "it'll be great in the next life." Screw that. I am pretty sure the afterlife will be good. Who  cares? I am suffering now. Jesus didn't say, "Sure, I am about to be crucified, but the afterlife will be so great." And that was meaningful suffering, we're told. Does my suffering do anything?

Is God limited? We say he is all-powerful, but are we wrong? Mom asks where God would stop if he healed.

Reynolds Price suggests God may not care for everyone as deeply. I don't like that idea.

He also suggests that everything, good and bad, comes from God. That is more tolerable to me, but it portrays God as kind of uncaring. He knew going into this then that a certain number of repeats on  a certain chain of one's DNA would cause Friedreich's ataxia, for instance, and he did nothing.

How is God not culpable?

I feel this even surrounded by blessings that make FA bearable. I refuse to feel hypocritical, though, because unless God accepts the blame for FA, he cannot be responsible for the blessings.

So I am left with an all-powerful God who can't help or an all-loving God who doesn't care.

I guess the former  is better, but God would have to limit himself.

And I just don't get how a loving father can be so cold.

Maybe I am better off sleeping in on Sundays.

Sunday, June 22, 2014

In the water

I went swimming today!

It was the first time since my kidney stone last May.

It felt quite good but also tiring. Just being in the water wore me out, so I will wait till tomorrow to write my latest theological rant.

Monday, June 16, 2014

Adventures in baby-sitting

y neiWe had just finished Nut Job, a little disappointing, and the kids were told to just lie down on the couches till their parents came home.

My nephew instead runs out and grabs his iPad. He then lies down and starts playing. I point out his mom probably meant resting, not playing. Without thinking twice, he replies "She just said lie down."

And for sure, she did. I wasn't sure whether to be annoyed or impressed.

And fyi, my niece was playing on her phone the whole time.

Friday, June 13, 2014

I may need a new exercise

Since Claren is no longer with me at work, I have started exercising at lunch to keep me outside for a bit at midday.

It's OK when I do leg lifts and ankle exercises.

But I have lately been having problems with trunk weakness. I know my trunk is weak. I have not been able to do a sit-up in years. So I have been bending over at my  waist and coming back up. I don't really know if it is a legit exercise but figure it can't hurt.

The problem is three people stopped today to ask if I was OK or if I needed help.

Tuesday, June 10, 2014

Think again, Winona

"I myself am strange and unusual," Winona Ryder claims in Beetlejuice.

But, honey, I got your strange and unusual. FA creates situations so bizarre that to explain them you wind up stringing together words that you never in a million years thinking.

Today, for instance, I got stuck on the toilet because I was sitting on my hand. Really.

I transferred to the toilet safely but a little abruptly. I hadn't pulled my pants down. So I stood again to pull down my pants, only to have my leg give out and send me sitting down sharply on the toilet. Oh, and my left hand was between the toilet and me.

Thankfully, my hand did not hit the water. That's another thing about FA that pisses me off. I need to be thankful for stupid things like this: that my hand, trapped between me and the toilet, didn't hit the water.

My feet slid under the toilet and I bent at the waist, so I had no way to get the weight of me off my hand. Plus, my hand was getting sore.

After maybe 10 hours, or 30 seconds, I was able to move my feet forward and that enabled me to stand up and free my hand. I also was able to finally pull my pants down.

And most surprising of all, I was able not to go to the bathroom till I was ready.

Definitely strange and unusual.

Sunday, June 8, 2014

Curses of a good book

It is, as i have mentioned, not always easy to blog when you are depressed, but I found something that makes blogging even harder -- a new book.

I just finished Skin Game, the latest in Jim Butcher's Dresden Files. The books follow a wizard in modern-day Chicago, who is a private investigator. He is kind of a cross between Spenser and Dr. Strange, which means he is awful awesome. The books also include a fair bit of good v. evil, religious type stuff.

This latest book is quite fun, but ...

People who nothing about service dogs should not write about them.

Harry Dresden has a dog, a very big and incredibly smart dog. The dog, Mouse, protects his daughter at school. It has been, we are told, certified as a "medical assist dog," so it can go to school. I'll skip over that -- I'm not sure what kind of school would let a huge dog accompany a child with no adult present, but whatever.

We then learn that Mouse is a classroom favorite and the teachers let the kids play with him.

Uggg, thanks Jim Butcher. It is hard enough to convince people not to pet service dogs. It distracts them and they serve for rewards like pats. If they get rewards for nothing, why serve? But no, he has a dog that allegedly has to watch his partner for a medical condition engaging in play with other people than his partner.

Not saying this ruined the book, but it did disappoint.

Tuesday, June 3, 2014

Who do I sue?

I need to consult my lawyer about future accidents in my wheelchair because they are coming.

I want to know who is liable when I flip into the road because my wheels don't go up and over bumps as they should. Do I sue the wheelchair maker, the wheelchair provider, all of the above?

Tonight, I realized that was is preventing a major incident with me and my chair is my reflexes. Trust me, you don't want to bet on my reflexes.

Here is what happened, but it is not a never-before event:

I was walking Claren down a sidewalk, my right side nearest the street.

Sidewalks have curbs on them usually, no major bump, just like a fraction of an inch higher than the sidewalk proper.

As I went down the sidewalk -- slowly because Claren needs me to go slow -- the right front wheel touched the curb. It shouldn't have been a problem. The wheel should have easily bounced up it, and I should have just kept going.

Instead, the right wheel banged heavily on the ridiculously small bump, and because it could not flow up the bump, it caused the left side of the chair to swing right. So I was more or less on my way into the street. And at this point, the right wheel does bounce over the bump, so momentum has me headed into the street ... until my reflexes swung the chair back to the left.

This chair is crap.

Sunday, June 1, 2014

Watch what you pray for

Do you think God is one of those jokers who grants miracles strictly by the letter of the request?

I pray to be cured of FA, and I am cured. The next day I come down with kuru. Or I get hit by a bus.

Do I need to start spelling out everything in prayers? That could take a while.

Or do I give up asking for a miracle period?

Wednesday, May 28, 2014

Whoops

So apparently, I worried my family with the Memorial Day post. By family I mean Mom and my little sister.

Mom was waiting for me when I got home from work yesterday to have a chat. My sister texted me the contact info of a counselor.

They aren't worried I might hurt myself or others. While I can see that I could possibly off myself, I could never hurt anyone else. And not to brag but hurting myself would hurt others.

The thing is the problems I wrote about on Memorial Day seem so unremarkable: Of course, people in chairs long for openness, and of course, a person with trouble hearing would find loud gatherings hard.

I don't know.

Monday, May 26, 2014

Sad Memorial Day

I do not oppose the idea of Memorial Day, but it vies with Thanksgiving for hardest holiday for me.

A lot of it is its timing, I suspect, at the beginning of summer. It reminds me that I will never do so many things -- water-gun fights, sports in weather I love.

And another big part is it involves a gathering. That means talking to people and often not hearing replies. It means often finding your way blocked because so many friends and family have gathered. People are more than willing to move for me, but this makes me the center of attention. Or rather, it makes the wheelchair the center of attention. And I am not saying I do not want people to make way for me, but ...

Another part this year is Claren. I can't help but wonder if this is her last Memorial Day.

Finally, I can't stop thinking about that guy in California who killed people because he'd never been kissed. Hurts my heart, but what makes people react differently? Unlike him, I blame me for my lack of kisses.

Oh well. The day is almost over. Of course that means back to work.

Saturday, May 24, 2014

Not a good wheelchair

On Thursday, I got my chair back. The one-week repair took three weeks, but that was not what made my sister describe it as "un-effing-believable." Well, she didn't say effing, but in her defense what happened was pretty ridiculous.

I brought the parts they neglected to take when I left it there three weeks ago, so it took an extra hour because one of the parts was a fender. To put on a fender means you have to take off a wheel, which apparently takes 50 minutes.

When they finished, we just left with it -- didn't test it or anything. I have to go back to get a new joystick, which has been recalled but is back-ordered, so I figured I'd test it over the next few weeks and give them my findings when I get the new joystick.

But when we got home, I tried to buckle the seatbelt and couldn't. They had bent it.

Mom was going to take it back, but when she called they offered to send someone. That was good because I also needed them to tighten a screw they neglected to tighten at the shop and lower the footrests, which they had raised.

My back is hysterically happy to be back in the Invacare chair and my whole body feels better. It still does a poor job of going up bumps, though. Still unhappy about that.

 
We were not racing! That would be both childish and dangerous. Instead, I was gauging speeds on my Invacare chair, which doesn't have a speedometer.
I thought it might just seem to take bumps worse than my old chair because it is faster. That is the only reason my nephew and I drove down the street together, just so I could measure the speed.

The Invacare chair was slower, so apparently it's shock system just stinks.

Tuesday, May 20, 2014

Depressing and depressing-er

My agency is moving this summer, so we have to pack up by mid-June. Today, I brought home all Claren's paraphernalia.

It wasn't much -- her bed, bowl, placemat and rug -- and judging by the smell under the desk, Claren will always be a part of the office.

As I knew it would, it wrecked me. I felt like crying or throwing up most of the trip home.

Then, I get home, lie down to take a nap, and it hits me: I started at USATODAY.com about 15 years ago. That means 15 years full time in a wheelchair. Cheers!

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