No skydiving for Matt

It would be OK if I died.

No, wait. It would not be OK; it would royally suck. But do dead people feel that things suck? It would be really really rotten for everyone here, but I'd be dead. I imagine that if it happened I'd be cool with it. I mean I believe in God and an afterlife that better be totally bitchin'.

Being dead would enable me to get on with the plans for a top-to-bottom reorganization of religion. And if the right folks don't go along with the reorg, they will find themselves in Wisconsin. If there is real opposition to the reorg, I go hostile on their asses and take the question to shareholders.

A dead person would also not wake up for dinner, go to the bathroom, run over his left foot, really have to go despite the foot that is under the chair, somehow manage to stand up at the toilet, bang the heck out of his left knee on the toilet bowl and pee all over the floor and just enough on himself that it requires changing. I imagine.

All of the above was my thinking when I decided to go skydiving -- well, not the reorganization part, that's new.

Much like she did with rock climbing, my adventure sport friend J, who does every every extreme thing I am sure, found out I wanted to skydive and set out to make it happen. We all should be so lucky as to have that kind of friend.

And she did mostly. She talked to the owner of the skydive place, found out it was mostly safe, got a superstar skydiver to be my jump partner (although that fell through).

All I had to do was call and make an appointment, and on Sunday I did. Or really, Mom did because I can't hear too well. The woman taking reservations told her not to tell me this but that a woman who uses a chair jumped the day before and broke her leg.

Mom, of course, told me, and that was it for me: The dream was over.

Dying, I can live with (HEE). Breaking my leg? Oh, hell no. The idea of being more helpless than usual struck fear into my heart and is going to keep me firmly in touch with the good earth.

I have too many things I need help with, and breaking a leg would mean everything required help. Makes me want to throw up just considering it.

I have since learned that the jumper who broke her leg was 200 pounds and that I would likely be OK, so skydiving is back on the maybe list. But not soon.

Piss, vinegar and a little inspiration

I am thinking I need a them song for when I am rock climbing.

Granted, I can't hear well. But I am thinking I'd recognize something "Eye of the Tiger"-ish.

I thought I heard "Further On (Up the Road)" off Springsteen's "The Rising" during my second climb, but that makes no sense really. Most of the clientele are like 20 and I am pretty bad when it comes to distinguishing music in crowds. It must have just been the blood circulating, but it's an odd song to imagine hearing.

Anyway, I went climbing again. It was a blast.

I was a lot better, but mostly that was because I came home from work and took a two-hour nap before going to the climbing center. Last time I went straight from work.

Mom and Dad drove me -- this time in my manual chair so I could get a ride home -- and I got the leg harness and the shoulder harness on. Then we went to the same wall as last time.

Before we did anything else we got this picture, which I wanted last time but forgot. Then I climbed. Claren is a hit with everyone there, of course.

The first route, one I climbed last time, was named the "3:10 to Yuma," not sure why. It did not seem to have much to do with Russell Crowe or Westerns, but that's OK. I actually did it pretty fast and felt good -- tired but good.

While I was recovering, my one friend who belays me and the one who climbs with me and helps me get my feet in position went out to scout tougher walls.

My climbing buddy K said it was apparent I was full of piss and vinegar and we should take advantage of it. I should have told her I am always full of piss and vinegar, but I had energy, too.

They found a climb that looked good. It was at least 500 feet tall, I am sure, or maybe 40 or 50. But it was tall. I believe it was called "Tiger," which sounds no more imposing then a Russell Crowe movie. And I think they were both the same rating in the Yosemite Decimal Rating System (check me out with the lingo!).

It was so much fun to get to the top of this tall wall. I stayed there for a bit so we could get the descent planned out and I got to look around. I could not believe I got that high. I haven't been that high since we climbed on to the second roof at Mom and Dad's, and unlike that time, there was no fear of plunging to my death, less anyway because J had a grigri (and yes, more lingo!).

One of the best parts of that climb was getting ready. I stood up on the wall before K was ready, so belayer J and I were talking. It was so much fun to talk to someone while standing. I'm taller than her, too.

She was telling me to let them know if I could not do this or if I needed to rest or anything. K asked me several times on the climb if I needed to rest, but the top was tantalizingly close so we never stopped.

I also had another reason for not wanting to stop and it made me think of my college roommate and best friend.

When I was in my third year of college, he was running a haunted house. He wanted to set up a harness and climbing rope for someone to be in the air and spook people. When he bought it, we went to test it out. He lifted me OK, but he wanted to see what it felt like, so I lifted him, or tried. He immediately was like: let me down, let me down. The harness was cutting into his legs.

Now, almost 20 years later, I sympathize with him. I may need to buy my own harness.

After I got down I watched another member of our group climb this wall that had an outcrop built on it. It was pretty cool to watch her figure out which way to go and what hold she could reach. After she reached the top and came down, I told her that was neat. She said, well, you were inspiring. HA. I am full of something but I am not sure it is inspiration.

And the last part of the night was getting a ride home with J. Last weekend and this trip have reminded me how nice it is to sit in the front seat. So fun.

Thanks. You know I'm going again.

Who cares if it is broken, it looks good?

It doesn't work, but I am wearing my Superfriends watch again.

My arm looked a little naked without it, for one thing.

Mostly, though, I just missed looking at the Superfriends. Did they ever fail? No, and they had to put up with the Wonder Dorks and space monkey Gleek.

I needed the watch today because we had meetings about an impending reorganization. It sounds OK, but we'll see. It is also weird to hear people you remember being hired take executive spots. NOT that they don't deserve it. I just wonder if I didn't have the obstacles I have ...

I could buy a new watch. When I got it from Amazon, I had to buy a book to get free shipping, so I know it wasn't expensive. But it gets bashed on every grab bar I use. When I put my hands on a counter, it gets mashed. Honestly, I was surprised it didn't break earlier.

But I don't need the time. I need the Superfriends.

Let's ride

The only bad part of the debriefing during the ride home from last night's barbecue was that I got dropped off first, meaning my friends were then able to debrief about their odd friend Matt.

The barbecue at another friend's house was nice. It is always a plus to be out with good people. It was too noisy for me to hear much and I said less, unless someone talked to me directly.

During the ride-home debriefing, one friend mentioned how quiet I was. I know, I know. I hate it, but I always have been quiet. In grad school, someone told me how I never talk but when I do everyone listens because they knew it would be intelligent. I had them snowed!

Add in the hard of hearing crap, and I really zip up. Even when I can follow conversations enough to say something, it is hard to know what has already been said, and I don't want to be a bore.

We were squeezed on to a deck so I could not move around, but it did not matter because several people helped me get food. Awesome!

The ride home was about the perfect setting for me to hear: two people, windows up, air on, lots of traffic so it was slow. Now if I only knew what they said about me.

Tennyson should have left affairs of the heart to heart doctors

I don't really want to admit this -- because I am all about the bitter -- but I got a really good report from my cardiologist on Wednesday.

I went for my two-year echocardiogram, but he saw me and canceled the echo. He said that because my EKG was exactly the same, my heart and lungs sounded fine and I had no complaints, there was no evidence of the heart problems we are watching for with Friedreich's ataxia. He told me just to come back in another two years.

I think we can all agree it is my near monastic existence that keeps my heart in such fighting trim, leading me to think: "Tis better never to have loved at all than to have loved and lost."

Where was my stuffed animal barrier?

Mom threw away most of our stuffed animals when I was away at college; the only stuffed animal I have now is Blue 2 from my nephew.

I am not blaming Mom's stuffed-animal purge for my fall out of bed this morning. But my youngest niece does surround herself with stuffed animals to keep her in bed. I did not have Pooky or Barf Bear or anyone to pile up on my bedside. Again, not blaming, just saying.

Without the stuffed animals, I rolled or stretched in my sleep and woke up with a SPLAT on the floor. Of course, it wasn't that simple because it's never that simple.

One foot had slammed on to the turning release for the cast iron radiator nearby. The radiator wasn't on, but it hurt pretty bad.

My head was above the Super Pole. The rest of my body was below the Super Pole. My neck was between the Super Pole and the bed.

It was about 7 a.m. so I knew Dad was up and I called for him. But my mouth was so dry, I was hardly audible. He did hear something because he came into the room a little later and said "hello?" I didn't say anything, figuring my situation spoke for itself. But I think he must have thought I was dead, because he quickly asked if I was all right.

I was, but my foot was keeping me from escaping. He helped me move that, then tried to get my head out. I wasn't so worried about that as I knew it wasn't stuck, but just needed me to move a little.

Dad left to go get help and, I took the opportunity to wiggle toward the foot of the bed to free my head. I got it free just as Dad returned with Mom. They then helped me into my chair.

In the driveway before I left for work, I was telling my sister, and I said something like, I could have done it without help if I had to. It was true. If I knew no help was available, I'd have sucked it up and scraped my foot off the radiator. I got my head free. I could have gotten up by myself. It would have taken longer, hurt more and just plain sucked. But I could have done it.

Pretty sure Mom and my sister don't believe that, but maybe if Mom had not thrown away all the stuffed animals, it would not be an issue.

Whoops -- don't be scared

Maybe, just maybe when I was looking through my older writings for something to post, I should not have looked in the leper folder.

I wrote that a few years ago when I was young and bitter. Now that I am old and bitter, I am still pissed off, but being that angry takes an awful lot out of you. I was exhausted just reading that post over. I do have other leper monologues, so watch out if you see leper again.

I could have instead soared to intellectual heights, sharing my essay titled "Sex and Scoob" in which I point out that Scrappy Doo is not the Great Satan some think. Take a read:

Sex can ruin everything, or so I am told. It obviously broke up the Scooby gang. Everyone always badmouths Scrappy Doo, but look what he had to work with: A drugged-out Shaggy and an over-the-hill Scooby. That's it. Velma, Fred and Daphne had left. No doubt the departures were because Fred knocked Daphne up one time when they were supposed to be hunting clues, leading an exasperated Velma to quit the gang because it was no longer about the mysteries. Humiliated and embarrassed, Velma took her mother's name of Dana, got contacts, dropped a few pounds and learned how to run. She then joined th FBI. Sure Velma made guest shots while in medical school and Daphne reappeared from time to time to make money to support a baby and out-of-work Freddy.

Be careful what you wish for: Here comes the Leper

Two people asked me if was writing something tonight. The one who was related to me actually whined about it. The problem is that on Friday I started working 11 to 7, which isn't bad, but it just upsets my delicate sensibilities and stuff so I don't feel like writing or doing much worth writing about. I did ride my hand-trike for the first time in a while, but that is all, so I started looking through my past writings.

I have Friedreich's ataxia. Usually, I am accepting of this. I don't get, though, why God doesn't nudge some DNA around so I don't get worse. Surely, the world is better off with me actively engaging it.

In the Bible, Jesus cures a leper. How, I always wondered, did that make the other lepers feel? I'd have been a little pissed.

“I remember when I got leprosy. First, it was just some sores on my stomach. I prayed to God that nothing else would happen, though I knew in my heart they were the start of leprosy.

“When I lost feeling in my foot, I prayed to God that that would be the end of it. ‘God,’ I said, ‘I have sores on my stomach and now I can’t feel my right foot, please, God, let it get no worse.’

“When my eyelid fell shut and no muscles would hear my plea to open it, I prayed again. ‘God,’ I begged, ‘I can live like this. Maybe not entirely happily, but I can live like this. Just please, please, don’t let it get worse.’

“My skin started cracking soon after as my body seemed to cry out for water it was so dry. I was driven out of town then because I could no longer hide my ailments. I turned again to my God. This time I screamed at God. ‘Are you happy? I am alone; I am scared; I am abnormal. I ask you again, Are you happy?’ And I filled the air with curses as I gave voice to my anger and fear. Then, I added: ‘Please, my home has been stripped from me. I have nothing, God, but I know I can survive as I am now. My disease pains me and loneliness tears at me, but I have books and papers and can be relatively happy.

“Then my left hand started losing strength and soon it was no more than a claw. I could hardly hold a book to read. Then I prayed again. ‘God, I know you exist and everything I have ever heard tells me you care, so why are you doing this or letting this happen? I know that it was nothing I or anyone did. I know I have not been cursed, but I feel damned. What is to be gained from this?’ And again I flew into a rage, filling my lonely hut with my cries of anguish and my sobs of fears.

“And God never answered. God never told me why I should suffer. I am supposed to believe that God is here, going through everything with me. God is beside me, loving me, urging me on, picking me up when I fall. But how am I supposed to believe that when my skin is falling off my body like mud, when my eye is forced closed? This is the act of a loving God?

“Again and again, my howls send their lonely calls throughout the night, and I curse and yell for a cure or at least an answer. Then after my tears have run dry and my wails have quieted and sobs no longer rack my body, I just ask not to get worse, please.”

Almost fun Friedreich's ataxia facts: Restless legs and Proprioception

Lurking somewhere beneath the really nasty symptoms of Friedreich's ataxia, like loss of coordination, fatigue, vision impairment, hearing loss, slurred speech, scoliosis, diabetes, serious heart condition, digestive and evacuation issues ... (Do you feel bad for me yet? I can go on, really.)

Beneath these are problems that pale in comparison. You might even call them fun or just annoyances, too embarrassed to consider them problems. You might, but not me, especially having dealt with several of thee issues at 3 in the morning today.

The first is restless legs syndrome -- a need to move one's legs that "is often accompanied by uncomfortable sensations." Normally, I only get restless legs when tired so I easily solve it by going to bed. But when you are already in bed, and have been for five hours, what to do.

I did not want to get up, mainly because I was so tired and I have that loss of coordination thing mentioned in the really nasty symptoms part above. I tried some stretching exercises in bed, pulling my legs up to my chests, but I was distracted by fatigue and the heat. It was so hot last night. I was as unclothed as this guy gets, but I was sweating. The fans were blowing air, but it was hot air.

The other problem popped up when I released the stretch and let my legs down. In the rock-climbing post, I mentioned that the other climber had to help my feet find footholds. This is because I have no idea where my feet are. Apparently, what I lack (among other things) is Proprioception, the ability to tell where your body is in space.

I'd lower my legs after the stretch, but in my tired fog, I'd lower my left leg on my right foot, which I would not notice until I got more restless legs and found my right foot trapped.

I was up till after 5 trying to relax and fall back asleep, but it is hard to order yourself to relax.

Spy vs. service dog

My 16-year-old nephew and I went to the Spy Museum. He is very good at watching out for me, better than Claren.

The museum was just OK -- not better than the many free museums in the area -- and I was questioned about Claren, making me wonder whether someone had complained and if she was bad.

A guard just asked, what kind of dog is that? and as soon as I said a service dog she said OK and left. What was odd is that there was a dog with a green seeing eye dog vest walking around with a woman who seemed to see OK and didn't seem disabled at all -- at least obviously. They should have asked her.

It was the first time anyone ever questioned Claren. There was one time in a restaurant that a waitress said no dogs, but I ignored her and let the manager set her straight.

At the museum, my nephew got to see one of the various stupid people Claren and I seem to attract. This woman pet Claren, which I would have allowed because it would have been too hard to explain the situation in a noisy museum. But next thing I know, she is practically hugging Claren. I start telling her not to pet her as she is working -- I said it loud enough for my nephew to hear -- but the woman ignored me. I finally pointed out the "Don't pet me I'm working" badge on Claren's vest, and she said, Oh. Mostly, she was done petting her, I think.

At the metro, a woman held the elevator for us with her fingernails, which were about six inches long and wrapped in tin foil. she read Claren's Don't pet me badge and said she needed to get one of those for her, leading me to wonder where she worked.

Everything was pretty boring after that.

And that is how I spent my last day of summer vacation.

Different

My family members have mostly gone home -- my nephew B is staying a week to help on the house -- but otherwise all our visitors have left.

I love my family a lot. I never get tired of seeing any of them.

But their presence always leaves me thinking of the Dave Barry column "Uneasy Rider," about when his 12-year-old son Rob got hit by a car.

"I can remember when there was nobody in my world as important to me as me. Oh, I loved other people ... and I would have been distraught if something bad happened to them. But I knew I'd still be here.... Rob changed that."

He is way too selfish for me. But part of what happens when we all get together is that I am reminded that I am the only unmarried sibling and one of two without any kids.

No matter  what people say, I don't have the kind of family I always assumed I'd have. Maybe that is for the best ... but it wears on me.

Why I pray

One of my sisters mentioned that she has been saying the Memorare a lot recently, and she recited it then to the rest of us sitting on the porch last night in the dark. (Kind of weird? Yes, I know, but that's the way we roll. Another one of my sisters recited the Angelus, which she memorized because one of her teachers made the class say it every day before she dismissed them for lunch.)


The Memorare
Remember, O Most Gracious Virgin Mary,
that never was it known that anyone who fled to Thy protection,
implored Thy help or sought Thy intercession,
was left unaided.
Inspired by this confidence,
I fly unto Thee, O Virgin of Virgins, my Mother;
to Thee do I come, before thee I kneel, sinful and sorrowful.
O Mother of the Word Incarnate,
despise not my petitions,
but in Thy clemency, hear and answer me.


The Memorare is one of my favorite prayers. I say it whenever I can't sleep or whenever my prayers don't involve falling down and cursing and pleading why.

Hearing the words last night, I realized that even though I say it, I am not inspired by any confidence. In fact, I have no confidence that I will be aided. I am not really sure then why I say it.

I was reading about and watching parts of a 2008 BBC movie called "God on Trial," which tells the story of a group of prisoners in Auschwitz putting God on trial and finding him guilty.

After they find God guilty, the Nazis come in and start calling out numbers. Amid the panic, one of the prisoners says: "So what do we do now?" He's told: "Let us pray." And the men put a hand on their heads like a yarmulke and pray.

The writer, who is Catholic, says he hopes the film recalls the parable of the Prodigal Son. "Only this time it was God who seemed to go away, and people who - inexplicably perhaps - were prepared to rush out to welcome him back."

Maybe that is why I say the Memorare, to be prepared when he comes back to my life. When he does, though, I am sure not killing the fatted calf for him.

Pink bracelet powers, activate!

Good luck tomorrow sdt.

After things are OK, Claren and I are going to see if there is an opening in the Pinkettes.

So I married my mom

Mom and Dad will celebrate 50 years of marriage on Friday.

We are throwing them a big party Saturday, and family members are coming in all this week for the party. Some are already here and this is my excuse for not blogging more this week.

The party invite included a wedding picture. Mom is recognizable by her smile, but Dad looks nothing the same. He has light hair and is real skinny. He never looked like that since I have known him.

I am sure some meanies will say it was the stress of raising me that aged him. Let me just say before moving on: Poppycock!

I never thought I looked like Dad, either in the younger pictures or in his adult look -- heftier but not fat with dark hair.

But several of Mom's friends saw the wedding invitation and asked why she was marrying me.

I still didn't see it. Part of that may be because I can't imagine myself out of a chair. But Mom didn't see it either.

We looked through the wedding album, and I was ready to call her friends senile ... until I found this picture.

Dad is smiling, you can't see his legs because of the girl and the white blends in with whoever is next to him (Mom, I assume), and his arm is bent at the elbow.

Now I can't get over how much I look like Dad. I am usually smiling, my legs are visible but never in a standing position and my arms are almost always bent.