Sticking around

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

It varied.

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

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

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

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

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

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

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

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

Oops

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

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

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

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

Dipping my toes back in the water

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

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

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

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

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

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

He points to an elbow, which she then kisses.

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

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

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

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

I am a mess.

'Technically,' I'll live

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

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

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

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

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

Too far gone

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

I wasn't.

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

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

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

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

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

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

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

I took 207 seconds.

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

My mascara

I got a  black eye the other day.

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

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

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

Looking up to my nephew

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

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

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

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

It's sadness.

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

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

More Evil Legs Syndrome

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

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

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

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

It kept happening, though, worse than ever.

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

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

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