Hurting


  

Yes, there’s the emotional pain of abandonment and loss and rejection, of my…nevermind. I shouldn’t even talk about that heartbreak. 

Physical pain is kicking my ass at the moment. It feels like my legs are burning and being crushed at the same time, and then they spasm and I can’t describe it. From an 8 to a 10. Thankfully each only lasts a second, and they only come every 30 seconds or so. Nothing like real pain to distract you from emotional bs. 

That said, I’ll always miss you.

The Bionic Woman


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Today I get to start the real drug with the clinical trial. I’m excited because I think I’ve been on a placebo for the past few years. Guess I’ll find out soon if I feel any different.

So, as part of this trial every few months I have the full work up, 2 neurologists, like 12 vials of blood taken, my 2 hour infusion, etc. I also have to walk…

So, I’m supposed to walk 20 feet (with a walker), and then I’m supposed to walk any distance for 6 minutes. I couldn’t do either today. Not even 20 feet! It sucks. I tried, but only made it about 13 feet before I had to sit.

I think I’m just having a weak day, in general, but the other part of the problem is spasticity. If you aren’t familiar with that term, it is basically when the muscles override the brain.

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A medicine which helps this is called Baclofen. So, I take this in pill form, but today they talked to me about a baclofen pump. It would be surgically implanted in my lower abdomen/side, and a catheter connects it directly to the spinal cord.

It is programmable, so it could deliver more medicine at night, or in the morning, or whatever. Since it goes directly to the spinal cord, drowsiness, and some of the other side effects are minimized.

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I’m not sure if I’ll do it or not. They will do a 4 hour test thing similar to a spinal tap, to see how I’d do with it before I schedule surgery.

Anyway, all that to ask:

I already use wheels for legs.
I work out by shocking my muscles with my ems.
I use braces/splints to stretch.
My hip is metal, plastic, and bone.

At what point do I become more machine than human, and doesn’t that make me some kind of superhero?

I’ve got to think of a catchy hero name…

A Life Worth Living?


You would feel the same way if you saw the look in your kids’ eyes. When you can’t tell who is in more pain, you, or your wife watching helplessly. I know the arguments. I know the reasons. I used to believe them too. Believe them…hell, I preached them…

“Your life is not in your hands! It is appointed unto man once to die. Does that say it is appointed unto man once to feel sorry for himself? It is appointed unto man once to feel some pain? If God wanted you to take your life, he would have put an “easy” button on our bodies so we could check out any time the going gets rough. GOD is the one who decides. He can heal or destroy. Blessed be the name of the Lord in sickness and in health.”

Oh yeah, I believed it alright. I’ll never forget the pained look in Stephanie’s eyes after she talked to me about her mom…

“Pastor Bill, what if someone is hurting…scared…”

“You must believe. You must have faith. There is a reason that she is still here. Don’t give in to the temptation to take the easy way out. I know that it is hard, but God can heal! You can’t forget that. He can take her mind and make it sharp again. If he can stop the mouths of lions, don’t you believe he can give your momma some peace?”

“I know he can. He could…you don’t understand though. She doesn’t know who we are. She is scared of the nurses, driven to madness by the constant beeping. If she has a clear moment, she begs us to take her life. The only reason she is even alive now is because of the medications they pump into her.”

“I am sure it is hard. She needs you to be strong…”

We never did finish that conversation. That is the problem with being a pastor. There is always someone waiting in line to shake your hand and tell you “nice sermon”. She probably didn’t think I cared. I know I didn’t fully understand…

I do now though. How the accident happened, I still can’t remember, but I will never forget the look in my kids eyes when they realized I had just lost control of my bowels. The fear in my wife’s face as she realized that the church would only cover the immediate costs from the accident, not the costs of a few months of inpatient care, and a year, if I’m lucky of home health. “Health” in which I will be lucky to remember who my wife is, as the internal injuries slowly kill me. No one should have to watch their kids wipe their dad’s ass or watch their wife give up her life to care for someone whose “life” isn’t really living at all.

Hobbler’s note: I need to know any objections to assisted suicide. Also any views for it. I wrote that story as fiction, but there are many people in far worse shape than anything I can imagine. Please share your opinions. I was born to take this debate to the next level, and this is your chance to make a difference.