Me, me, me

This post is all about me, something I did not want to do. I have not posted in a bit, and, well, I’ll talk about it. And there is some about Pearlsky, how could there not be?

Three weeks or so ago I woke up, was walking into Pearlsky’s room to wake her up, and spontaneously ruptured L4 disc, resulting is a shot of pain like never before down my right leg. Somehow I got her dressed and in her chair. Made it to the living room, called her school aide who came early and got her off to school while I pretty much laid helpless on the floor. By noon that day I saw the chief of the spine center at a world renown orthopedic hospital. I’ve seen him for minor stuff before since he is a protege of Pearlsky’s physiatrist and I’ve had my share of back muscle stuff, nothing like this. Here is our conversation, and yes, it really was our conversation …

You really don’t look good, SD, what happened?

I was walking into Pearlsky’s room this morning, something literally snapped, an incredible bolt of lightning flew down my right butt cheek, through my thigh to my foot. I can’t walk nor move.

How bad is the pain now?

It hurts like a fuck.

Ok, I know a fuck is not supposed to hurt (at least not if you do it right, but we won’t go there now). There is no other way to describe it. I did hurt like a fuck.

Well, on a scale of 1 – 10, how would you rate it?

I have never experienced pain anywhere near this, ever. I cannot imagine worse pain, that makes it a 10, no?

So, he tests a couple of things, gives me a script for oral steroids, Percocet, and an appointment in five days.

Two weeks of incredible, unrelenting pain. Especially at about 3 AM, waking up wanting to cut my leg off. The Percocet and Vicoden don’t even touch the pain. I can barely make it to the bathroom (across the hall from my bedroom), the urinal is six feet closer than the toilet (too much information?) but I learn early on I cannot stand still long enough to use it effectively (more tmi?).

Finally, a steroid shot right into the disc (not the nightmare that everyone thinks it is). The pain is now manageable, but there is little if any strength in my leg. Cannot drive. Cannot really stand still. Still have this pain at 3 AM that is awful. Tomorrow I see the doctor again and may talk about surgery.

So, this is all about me, remember? How do I care for Pearlsky like this? What’s it like to know that I cannot care for my own daughter?

The couple of women I could really use are a gazillion miles away. People pitch in. I cannot do anything the first few weeks. Some people really pull through, staying the night, learning on the spot how to use lifts and how to feed Pearlsky. Others, well, disappoint. I am not so macho that I won’t ask for help, but it does not come easy. The need was, well, incredibly obvious.

They would wheel Pearlsky into my room and we would explain that “daddy is sick.” And explain my leg did not want to work right. Not known what she understood, but she seemed ok with it.

I cannot care for my own daughter. That hurts like a fuck.

People call all the time. People who care, people who love me.

How are you feeling today?

What do you say to this?

Hurts like a fuck, mom.

If I tell anyone, yes, just about anyone, “It hurts a lot today” I get …

Oh, I feel so bad for you.

Well, you get the response of the year award. … if I say the truth “hurts like hell, worse then yesterday” I get “oh, I feel so bad.” Fine, let’s practice co-dependency, let’s make me feel bad that I feel bad which makes you feel bad. Do I really need to know that telling you the truth will make you feel bad?

So I lie. “I’m fine.” Why don’t you let me tell you the truth, and then offer to do something to help? Ask if you can help with Pearlsky? Offer to bring over a Big Mac. Bring over that leftover morphine from when your mom was dying. Just don’t tell me that telling you the truth bums you out.

Hey, want to know what I understand?

1. I better understand what it means to be crippled. I have come as close as one can to understanding what it means to be severely retarded, but not crippled. Yeah, bad words. Big deal. Crippled, as in this case, totally dependent on others for most physical things (I was able to toilet myself, another level I cannot fathom). I understand it.
2. I better understand Aron Ralston. He cut his own arm off to survive a climbing accident. The first two weeks, I could really see cutting off my leg at 3 AM because of how bad the pain was. I honestly don’t know what I would have done if there was a bayonet within reach. I figured the .357 would have woken Pearlsky up so I did not reach for that. But I understand Aron now.
3. I better understand the murder-suicide of a parent and a disabled child. I’ve always understood this one, but it hits home when you are in agony, alone, middle of the night, imaging this will be like this forever. Thank god my mom is still alive.
4. I better understand my ex who once during the three weeks offered to send over her husband to help with something I needed (I forget exactly what). Once. And offered him. Well, I understand, you see she is on sabbatical now (i.e.: not working), lives three miles away, and is healthy and able.
5. I better understand the definition of “scared.” I also learned I hate being scared. Not a fun feeling.
6. I better understand why, when I took my best friend to Dr. Susan Love when she was diagnosed with breast cancer, why Susan had a team waiting and told my friend what was what and what they were going to do. Very few choices, just firmly holding her hand, telling her everything, giving her the answers. A great way to deal with a woman in that situation, just diagnosed with breast cancer, scared, confused, etc. Big shot orthopedic nero physiatrist kinds could do a bit better and understand that not everything said to someone in tremendous pain and just a bit nervous is going to sink in properly and be fully understood.

While I was in the waiting room, alone, waiting for the steroid shot in my spine, around 1:30 PM, a friend called. She lives about 200 miles away, very religious, married with kids as young as three. I guess she heard something in my voice …

Are you in pain or is it very scary?

Yes. I’ll call you when I get home.

I got home and around 4:00 called her house. I get the baby sitter and ask if my friend will be around soon. “She’s on her way to visit you.” Now, I know she has a close friend with the same name as mine, so I let it go. “Thanks.”

The doorbell rings at 7:00 that evening. She walks in with a large tuna casserole and potato soup. She just cooked them, got in her car with a printout from google maps (no gps), drove 3.5 hours to someplace she has never been. She stays a few hours and leaves.

Other friends have decided to “give me space.” I’ve learned a lot about people. Some rise to an occasion, others fall under a bus.

Hardly anyone that knows me knows about this blog, so here I offer some thanks to those who will probably never know they are thanked. Here at least. To those local wonderful people (alphabetical since I have no clue what else would be possible) Anna, Ben, Brenda, Lauren, Mary, Miriam and Yelena, without most of whom I have no idea how Pearlsky would have been physically cared for, no clue, and to those numerous friends and family at a distance, Dorma, Kelly, Susan, Kate and too many others. Just letting one know you care goes far.

Oh, and guess what medical journal paper I find on the Internet today? Turns out the enzyme my kids are missing, the genetic defect for which I am a carrier, well, a paper on why that enzyme is so important in the “regeneration of peripheral nerves and for the proliferation and activation of macrophages upon nerve injury.” I know I don’t have the defect they do, but then, I don’t know if my generation of said enzyme and resulting amino acid is normal, nor does anyone. Don’t tell Pearlsky she’s sharing some of her meds with her dad.

And in case you care, my leg now only hurts like a heavy petting session.