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?
- 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.
- 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.
- 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.
- 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.
- I better understand the definition of “scared.” I also learned I hate being scared. Not a fun feeling.
- 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.
Oh, God, Oh God. That’s all I can say. I know, though, that if I were to live nearer to you I would help you and help Pearlsky. I wish that there were something to arrange from afar — is there?
My mother has had years of unremitting pain from her back — two spinal fusions, etc. — it literally changed her personality although she recently has finally gotten relief. I believe she’s on big-time drugs, water therapy, etc. I just can’t imagine your pain coupled with the almost existential terror of who is going to care for Pearlsky. I feel like I’m just rambling negative stuff right now, so I’ll stop.
Honestly, my heart goes out to you, hoping that all is well or at least better, very soon.
I suppose there was no Purim carnival for you this year.
I’m sorry. I have no idea what this must be like. I was having “10 pain” this fall, but it was at least intermittent. I wanted to chop my abdomen off, but thought better of it. I am glad you have friends who stepped up, disappointed in the others.
I’d like to send some food your way, but wouldn’t suppose you’d want to send me your address? Heavy petting session pain is still not good.
Killer post…no words.
This is a great post. 1) I’m glad your pain is decreasing and I’m very sorry for all you have gone throught these past weeks. 2) I am impressed with those who DID step up.
But this comment is directed at the excuses for those who dis not step up. The “oh I’m so sorry” or “I’ll give you your space” comments are the most frustrating. These are the folks who acknowledge the problem and tell you they won’t help. All the while they are patting themselves on the back for acknowledging the problem. At the same time they are likely tellilng other friends and acquaintences that you want folks to “give you space” and s/he doesn’tknow how you do it.
I’m heading into shoulder surgery tomorrow and will not be able to pick up my disabled daughter for over a month. My husband/her dad is here so the situation is not like yours, besides I have the luxury of PLANNING, but it is still daunting.
Continue to improve! I’ll give you some space.
My grandmother once had an old Border Collie who spent the better years of his life herding sheep in Wales before one of his legs was run over by a truck and paralyzed. One morning, Gram came downstairs to find him happily wagging his tail as he lay in a pool of blood, chewing his own leg off.
Sorry for that comparison, but I take it that’s how you felt when you injured your leg.
If you need a Big Mac or help with Pealsky, drop us a line. I have no idea where you guys are, but Monkey and I are always up for a road trip.
Thanks to everyone for the good words, both here and in private emails.
Elizabeth: I agree, actually been saying “oh god” a lot lately, and it’s never good when you say it when you’re alone …
Beruriah: I should have gone to a Purim carnival … would have been a great costume since I always imagine the bad guys in history to be slumped over and limping … thanks for the food offer … we’re all set now, but you never know …
Claire: Speechless?! What did you do with our Claire?
Sally: Shoulder surgery … oh, man, I
feel so bad for youhope it goes well.
Jo: One smart dog, there. At this point, I have no idea where we are either.
Thanks again to all.
Me too. (In my best impression of Hugo Weaving…)
Lots to try to digest in this one, dunno even where to start, except to say that I can’t even begin to understand how difficult your life is under normal circumstances, but to add on a disc issue is nightmarish.
I have disc issues as well, so I can at least relate to that part of it, but then having all the other responsibilities…ALONE…well, you are one remarkable human being.