The adventures of Sad-Man

I am sad.

I ran over the puppy today. Claren's skin allergies are acting up and she scraped up her head, which means she needs to wear a cone, which means she can't jump onto my bedd.d She just stands at my bed with her chin on the mattress and looking at me. A friend of the family also got a poor neurological diagnosis.

The last is really the worst.

Whenever someone is diagnosed with a neurological disease, I feel guilty. It makes no sense, I know. No one else should have to go through what I do. I know it doesn't work that way, but I feel like I need to apologize.

My sister heard me say I am sad and pointed out that everything makes me sad.

I said elephants don't. She disagreed, pointing out that they get poached and their tusks cut off. She was right -- I was thinking of the poaching crisis right after I said elephants.

I next tried superheroes. She said they make me sad because I think why can't I do that. Dammit! She  was right again.

I think that is my superpower.

Too much

It is hard enough to deal with the odd sadness that accompanies the changing seasons four time a year.

But summer becoming fall in August? And then going back? I hope. Too much.

Too strong for my own good

The alarm went off this morning, and I rolled out of bed.

When my butt felt thin air, I realized I had rolled too far.

My hands were on my stripper pole, so I did not really fall, just sat down on the floor.

I pulled myself up standing twice, but it was like, now what? My feet were sliding this way and that so my legs couldn't support me. Even though I was upright, I could not get back into bed or into my chair.

Fortunately, my phone was right there and I called my sister.

She came and put my shoes on and helped me up. If I had even thought of putting on my shoes, I would not have had to call her. The shoes were easily accessible. Why didn't I think of it? What a waste.

And it stuck with me all day.

When I woke up at 11:15, I didn't want to get up and maybe fall again. I finally did, but it took all of my positive thinking. I didn't do anything all day, not even swimming.

Not that it helped. I still feel crummy.

A break from the cold

Everything was fine until I called Mom to tell I was not taking Claren for a walk because it was too cold.

She said OK and asked if everything was all right.

It was so I said so, but then I started thinking: Is it?

I started feeling so rotten. I decided too walk Claren, even though it was cold, to see if it would make me feel better.

It did a little, and it was't that cold.

Good, but just for a moment

In a bit of good news, I have concluded that the fall did not make me sad. So I can fall all the time, which is a relief because I already do.

I decided it wasn't the fall because I can't really remember it, but I still feel sad.

It's not like I am drowning in despair. I have had fun with relatives this week -- my oldest sister came down from near Boston to take her daughter back to college and her oldest son joined her. My middle sister was here for a bit, too.

Let me say for the record that I am very glad my niece goes to school near me.

I went to the mall with her and my little sister and had fun. I also learned something odd. All the purse manikins in Nordstrom were naked. If I had no clothes, the first thing I'd buy would be underwear, not a purse, but whatever.

But it is like someone tosses me a life preserver that works great for a little while. But as soon as Game of Thrones is over or the last joke is told, I start sinking.

The bad thoughts overwhelm the good ones. I am not sure why, and I don't like it.

I need more than 10 minutes

Mom's right, of course.

We had just come back from a short ride/walk yesterday -- I rode my handcyle; she walked with Claren.

I was saying that the ride made me sad because I can't even stay in my trike seat -- I keep sliding forward and have to stop and reset myself.

She said that if we spent more than 10 minutes on my issues we could solve them. But all we have is 10 minutes because then another issue pops up.

We were talking about harnessing solutions for my trike and we went in. At that point I hit my heel on the footplate of my chair and remembered that has been a longtime pain.

Mom fixed the wheelchair issue for now by putting some rubber on the footplate but that was after this morning when my alarm clock became the latest issue. The snooze button is so big that I hit it by accident. Then nine minutes after I got up, the alarm went off again. I can't reach my alarm clock without getting in bed, so this morning Claren did not get her continence pill, the bathroom light stayed on, and my door stayed open because I had to get in bed to turn off the alarm.

I was going to go to a store to find a new lock with a more modest snooze bar but no one really stocks clocks. Stores just have them on their websites, but none of those websites really shows snooze bar length. Eventually I ordered one, kind of a guess.

So that is two out three issues solved. Sounds good? It was until my bladder decided it reallyreallyneededtogo. In the ensuing cleanup, which my little sister should not have to do, I missed the end of Once Upon a Time, a fairy tale in real time.

I am pretty confident my story will not have a happily everafter ending.

When

I have been in a wheelchair full time for 11 years. I have known I have Friedreich's ataxia for about 15 years. I have known I have an ataxia for more than 20 years. I have known I have something wrong for years before that.

When do you stop feeling mad about it? When do you stop feeling robbed or jilted? When do you stop looking for someone to blame? When do you stop feeling like some owes you big? When do you stop feeling guilty about needing help.

When do you stop wanting to cry or to sleep? When do you stop worrying about everything because FA touches almost everything? When do you stop wanting to walk, run or, hell, even laugh without coughing?

I want all those things but am no closer to any of them than I was years ago. In fact, I am further from them.

Yeah, Mom

Last Mother's Day, I talked about how I inspire maternal instincts in women who aren't my mother.

Last night, though, I fell apart and needed the real thing. As she always is, Mom was there.

I am battling recently some really rotten feelings. Not sure why, but depression is bearing down hard lately. I think I do a good job hiding it at work and putting on a friendly face, but it is exhausting.

Distress with God often pops up during these dark days and darker nights, and my youngest niece had her First Communion earlier yesterday. One of her gifts was a guardian angel pin with the saying that God will not let the righteous fall.

I said to Mom last night: "But he does let the righteous fall and pee all over the bathroom floor" as I had done earlier. I realize that declaring myself as righteous may make me self-righteous, but that was not a big concern at that moment.

Mom assured me God does protect the righteous, but I stuck to my guns as my tears started to run: "He talks a good game, but he really doesn't." And then I really lost it: crying and heaving.

She just hugged me, and that helped me recover. It didn't remove my doubt or solve my problems, but it's hard to despair when you feel how much your mother loves you. Plus, my allergies are so bad that the crying and sobbing made it so I could not breathe, so I had to settle down anyway.

But it was mostly the hug.

Why not?

I am convinced God exists. I am much less certain whether God cares or whether God has any kind of active role in our lives.

If God were anything like what I have often wished, I would not have had a day like today.

Someone, perhaps on his right hand or maybe his left, would have said, "Whoa, Dude. Matt has had a crap day. His mom should not have to do that. He has been humiliated enough for the day. Why not give him a fucking break?"

And then the compassionate God of my dreams would ease my struggles just a bit, take away some bad part of my day -- the digestive issues, the falling, the incontinence.

In the real world, with the absolutely baffling and seemingly cold God, the struggles multiply.

Does it get better?

Teen-agers have it ridiculously hard. No getting around that. And teens who are gay have an extra high hurdle.

But I saw a video the other day that almost made me jealous of such kids. Apple employees made a video for the It Gets Better Project telling kids that their lives will improve as they get older. Many people have made similar videos.

I lay in bed this morning for 20 minutes wondering if life gets better for me. I don't know that it will really.

I got the lab results from my physical and the blood was mostly OK. I have low Vitamin D, which seems likely in the winter since you get some from sunlight. And the vitamin from the nutritionist already is adding a bunch of vitamin D, so I am not worried.

The urinalysis found small amounts of blood in the urine, which isn't supposed to happen. My doctor thinks it was maybe some minor irritation or infection and isn't worried. I think I probably contaminated the specimen somehow because it is hard to get a clean urine specimen when you can't stand. I'l try again next week.

The problem is I am almost 40. I suspect that the wear and tear on my body is harder than that of others, and I worry that various body parts and systems are just going to slowly start falling apart.

I just there was a video like this for people with Friedreich's ataxia.

Slip sliding away

As happens every so often, I slid as I was getting out of bed, missed my chair and wound up crouched down between my bed and my chair. I wasn't hurt at all, but I was a bit stuck.

Maybe it happens because the bed is too high and my feet slide along the floor instead of gripping something. Maybe it is because the bed is too narrow to accommodate my momentum as I roll out of bed. Or maybe it is because I have fucking Friedreich's ataxia.

Anyway I was stuck. Even with Dad's help, it took like five minutes to get up and into my chair. Then came the hard part. I had no energy to do anything. All I wanted to do was slump down in my chair.

I forced myself to go to the bathroom (I am not stupid. I knew that was urgent). Then I could not bear the idea of transferring to the shower chair so I made myself shave. I don't have a big face, so that did not take long enough. Plus, I banged one of my knees on a pipe under the sink.

I managed finally to shower, without incident, and went to work.

I am just so weary. I don't think it is depression. I think I am just tired of having FA, of having to expend so much energy to get through the day.

Or maybe it was just a bad morning.

Are you happy?

Mom and I were filling out this crazy long questionnaire for a doctor, and one question was: Are you happy?

I said no, but that isn't really what bugs me. I am not unhappy, just not happy usually. I am a bit sad today: Anther friend is leaving the company.

But the problem with this middle ground is that I cannot imagine anything that could actually happen that would any happier.

I'm sorry

You know how in It's a Wonderful Life, George comes home on that day Uncle Billy lost the money and when Mary asks what's wrong, he says, "Another big red-letter day for the Baileys"; then he yells at his kids, apologizes, tries to kill himself and is saved by his guardian angel?

Well, I promise not to try to jump off any bridge. I only have 4% power in my chair anyway -- I had to turn it off and on multiple times just to get enough power to get up the driveway. I couldn't get to a bridge.

I also won't dive into a cold river because I suspect my guardian angel would not be up to saving me.

Like George, I also have some apologies to make. I am sorry that:

• I run into walls and scrape molding off. It wasn't on purpose. I didn't realize I was touching the wall.
• I have roped people at work into helping me move my stuff to a new desk. I hate that I can't do it.
• Just after getting a moving helper, I tried to move a desk tray and dropped it. It was heavier than I thought.
• I laugh when I do something stupid or successfully stare down death. The alternative of weeping is much less pleasant.
• The cleaning staff will think there was a raucous cocaine party at my desk because of all the white powder on the floor. Actually, I just spilled three packs of sugar.
• I drive poorly in my wheelchair, particularly backward.

Finally, I am really sorry that doing anything these days -- even writing -- just seems too damn hard.

Someone call 911 ...

The water had not quite boiled when Mom and Dad got home from her 50th college reunion.

This was good and bad. Good because they could safely pour my tea for me. Bad because their return kept me from dealing with the fact that I really should not pout boiling water out of a kettle/.

I know my sister would have come over if I had called. I was also considering texting "911" when the water boiled, but I doubted she would find tea a true emergency. Maybe if had told her I needed her help to get the homemade congo cookies?

I love that there are people who will help me do anything. I hate asking them, though.

I want to do so many things -- and I probably could do most of them -- but I need help, and it is not as simple as just asking. Schedules have to be synced up, etc.

When I spend a day mostly alone, I often think of things I could do ... if I could drive, if I could get on my trike by myself, if if if ...

Is it ever not a time to cry?

Fall is coming.

I don't know this because I wore a long-sleeve shirt to work Friday, Or because my feet are cold when I go to bed. Or because ragweed is driving me crazy.

I know fall is coming because of how inexplicably sad I am lately.

It must be the change of seasons.

There are things weighing upon me: a mean world, uncertainty at work, the new house, allergies, occasional falls, what will happen with the stolen DED device on Eureka. But nothing new (except Eureka and I am sure that is not it).

I know that I will be fine eventually. But I hate worrying that at any moment I may feel like crying. I wanted to blame the generic Effexor XR I just started taking, but I felt rotten before that.

Malaise-y days of summer

I don't remember ever having writer's block like this.

It is not like nothing is happening. I just don't know what to say about it.

For instance:

• I noticed on Thursday morning a bruise on my inside upper arm in almost a perfect little circle, dime-size. In the middle is a hole. I had no idea what I did until later Thursday as I left a meeting. I swung my chair around to leave and just like I did the day before my arm got smashed between the corner of the table and my chair. People were waiting or me to go first through the door so I just kept going, knowing I'd soon get past the table and be OK. That is how bruises happen.

• I hate even going to meetings because I often can't really hear, but my boss has been out of the office. So work has been hectic, and I mentioned to someone that I was feeling cranky. She said she had never seen me cranky. I can never tell if that is good or not. I think I hide my crankiness because I am worried that people won't understand Cranky Matt is just temporary. Mostly, though, I think I am just not cranky when I am with people I like and don't want them to deal with Cranky Matt.

I thought this theory fell apart because I thought my family sees Cranky Matt. My little sister is always calling me "Crank-enstein." But Mom said I am sometimes sad, not cranky. Take that, little sister.

• My shoulder still hurts. It is worse in the mornings but OK once the muscle is warmed up.

I just feel rotten, not physically. Mom said maybe I miss my family, by which she meant my little sister's family. She is probably right.

Awake but not alive

Back when I was considering anti-depressants, my counselor said my brain was tired of being tired and coping. Her hope was that that medicine would get my brain back to a level playing field.

I have been on various happy pills for about 10 years now, and while I can't say they haven't helped me in some way, I am still so tired. I nap every afternoon and would sleep till noon if I could.

I know everyone is tired – new parents feeding a newborn, whoever – but I don't really recall a moment when I wasn't tired.

Are you sure you want to read this?

A friend from work recently accused me of running “a secret blog." She was joking (I assume). It was a conversation via IM so I guess she could have been serious.

I told her that I need a place to curse and act out, but the blog isn't really secret. I would not mind if everyone read it. It would give me a bully pulpit.

I am not real sure how to bring it up, for one thing. But to be honest, I can't imagine that my co-workers all want to read about the crap that goes into having Friedreich's ataxia.

Take this week, for instance: At least 35% of the times that I have gone to a men's room at work, the wheelchair stall has been either occupied by a non-wheelchair user or dirty. The dirty in question include bodily fluids and newspapers covering the floor and hanging on the goddamn grab bars that I need to grab to keep from falling.

I see the folks I work with, so I know they are intelligent adults, but in the bathroom some apparently revert to childhood.

As least I am getting better at reacting. I went into the men's room today, saw six empty stalls that I cannot use and one wheelchair stall that was occupied by a non-wheelchair user. I turned around and said to Claren as we were leaving “Un-fucking-believable.” I am sure the abuser did not hear me, but one of these days, he will.

Better yet, take last night, as another for instance: I woke up about 2, had to go to the bathroom and did not get everything lined up with the urinal. I tried several alternatives: pulling up the covers, putting on sleeping pants, going commando in said sleeping pants, but in the end I had to take a shower. I figured I better alert Mom and Dad or they'd hear the water and be freaked out.

I got into the shower OK, wrestled with the nozzle, lost, shot myself in the face twice, then washed and reached for my towel. It wasn't there, and towels are not a convinient thing to reach, so I got out of the shower soaking and managed to grab a few washcloths, which dried the brunt of me, and then I got a towel.

I finally managed not to leap out of my chair when I heard Mom outside the door. She had gotten up to clean my bed so I could go back to sleep, which I did.

See! I mean, sure I have plenty of hilarious escapades and humorous asides, but I am not sure I want to read about the crap that goes into having Friedreich's ataxia.

I have to write about it, though.

All through the shit of last night, I didn't despair or cry or even want to. I just thought: OK, here is what I will write ...

Why write something public (even if it is sort of secret)? Maybe it'll help someone. Maybe they'll see that their experiences with FA aren't unique. Maybe Mrs. Gates will read it and say, "Oh, that Matt, he deserves millions of dollars. Write him a check, Bill dear."

In the end, that doesn't matter. I write because that is what I do. It keeps me sane and alive, and hopefully not too bitter, in the face off a really awful disease.

Doctors baffled as guy walks into new house

The home-building is moving along at exactly the pace my real estate friend said it would. That means slower than I hoped but about what I expected.

Perhaps, though, this will give me time to temper my beliefs about this new house will change my life and make everything wonderful.

I am pretty sure the house will not cure my Friedreich's ataxia, and what would be the sense of that since it will have all those accessibility features.

But other than that, I have life-changing expectations.

I'll become the host of parties, and friends will stop by all the time. I will play Wii with my nephew all night. Claren the wonder dog will find canine friend nearby. Mom will still make me muffins because, let's face it, Mom's cooking vs. my sister's ... (HEE! Just a joke.) I will become a social butterfly.

I have a problem with expecting changes in locale to solve my problems. My second counselor put me on meds because I became depressed when moving back to Northern Virginia didn't make everything better.

I was so sure it would, never mind that I was also using a wheelchair full time for the first time.

I was so sure I'd make friends and go out. I guess I slowly made friends, but when you don't drive and can't get into a lot of houses, well, you don't get out as often as you'd like.

I started seeing my third counselor after I moved into my own condo, and that also did not free me, at least not like I hoped.

The house will be done in summer sometime. I have until then to lower my expectations; maybe just count on the all-night Wii marathon.

Friedreich's ataxia and snow don't mix

Snow really makes me want to walk.

I know I can't and should probably not dwell on it, but snow does and I do.

I want to post on Facebook pictures of my snow adventures except they'd basically all be the same, me sitting on a couch.

There was this morning when I went down the ramp and promptly got stuck. I sat there for an hour hoping the sun would free me before I called my sister. I had warned her earlier that I was stuck and it wasn't the only reason I sat there. I was also hoping Claren might run around but she seemed quite content to lie in the snow and chew her ball.

I did consider making this my FB status: "Snow really makes me want to walk." Boy, that would have been a downer, huh? Not to mention awkward, which would have been why I posted it. How do you respond to that comment? Can you "like" it? Can you reply? Can all you do is unfriend me?

But snow does make me want to walk, and because I get snowed in easily, I get plenty of time to think about it.

I want to walk her and see the neighborhood covered in snow. I want to clean the snow off Gram's boxwoods so they don't break like they did after the Christmas snow (and I don't want anyone else to clean them). I want to make a snow angel and get up after. A friend told me after the Christmas snow that I should have. I pointed out that I did want to be able to get up before spring. I want to shovel sidewalks and the driveway and feel the muscle pain that comes with hard work, kind of like the pain that sits in my legs when I do my toe raises.

I don't know which be madder at: the snow or my not walking. Neither, though, are likely to change because I want them to.