Only kindness

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

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

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

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

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

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

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

I don't want to be curmudgeonly

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

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

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

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

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

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

The bidet to end all bidets

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

And yesterday it prevented a monster colonic.

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

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

Fortunately, it missed everything but my shoe and chair.

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

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

More, I hope

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

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

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

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

Niece and nephew to the rescue

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

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

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

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

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

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

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

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

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

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

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

I'm not fat, or even big-boned

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

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

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

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

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

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

???

Heart surgery for me

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

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


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

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

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

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

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

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

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

Reset the sign

I got cocky, I know.

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

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

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

It has been zero days since an accident.