“Tell me how you’ve been doing since the last time we spoke?”
At least the questioning was consistent. I supposed I should take comfort in there being something that remained the same. Of course that didn’t stop me from replying without the brain filter in place. “Do you really have to ask?” I kept staring at the ceiling tiles. I wondered if the room was really that dark.
There wasn’t a reply or even a sigh revealing a hint of disapproval or exasperation at my tone of wording. Not that I really expected one. “Okay, fine, I’m about the same as always. Is that what you wanted to me to say?”
“Only if that’s the way you’ve really been.”
Was that what they call passive aggressive? “Yeah,” I sighed. I had always wondered what that ‘sigh of an answer’ meant in reading but now I knew. You could sigh and speak at the same time. It’s like a surrender of spirit almost.
“Tell me how yesterday was.”
“It’s like every other day Pinky, I tried to recover my world,” I said.
No laugh. None expected. But I imagined old cartoon shows about mice weren’t on the viewing list.
“Where do you want me to start?” I stared at the spot on the ceiling where the shadows always made the dust look like a puppy if you looked just right.
“How did you sleep?”
The thought of ‘in a bed’ came to mind but I knew better than to be that sarcastic. There was being pretty tolerant and forgiving of my moods, and there was downright disrespectful. Even if I didn’t have the brain filter any longer I still knew better than to be downright disrespectful. “I woke up about 1:30 the first time, I think. The days tend to run together after so many being the same.”
“Are you sure it wasn’t 3:00 AM?”
I was wrong there was a sense of humor. “You’re a funny guy I don’t care what they say about you.”
“Why did you wake up this time?”
I smiled in spite of exhaustion. “This is a funny one. I think I actually breathed too hard.” I knew that wasn’t going to be enough of an answer, but it was the truth.
“How do you breathe too hard?
“Well, actually I just took a deep breath for some reason. It could be the sleep apnea.” But if it were sleep apnea then I would not be breathing at all, but then I would take big gulps of air. Okay so it might have been the sleep apnea.
“And why would the deep breath wake you up?”
I started counting the tiles in the ceiling, as if they had changed in number since last time, or the time before that, or even the time before that one. “Pain Monster didn’t like it.”
“The ‘pain monster’ is your lower back?”
“Yes,” I began. “At least that’s what woke me up. Then Neck Grinder started to protest as well.”
“The middle didn’t bother you?”
“Not so much to wake me up this time. He’s more of a nag than anything.” I should have just given everything so it could have been over sooner.
“And how long did it take you to go back to sleep?”
Images of digital numbers fought in my mind for which one would win. “I tossed and turned or really I don’t exactly toss and turn because that would just make it worse. But I make it from my left to right and back again trying to stop the pain on one side and then the other. I hoped that it would ease up enough to let sleep take over. It may have been about an hour or two.”
“Did you sleep until dawn?”
“No. I guess I moved again. It had been about 15 minutes since I had last looked at the clock. But usually after I wake up that first time it’s all over for the night as far as solid sleep. I guess my brain decides the body has had just enough rest to keep going as long as I stay still for a while.”
“Did you get out of bed, watch some TV, or do something that might make your brain tire enough to overcome the pain?”
Good ideas. “I thought about it, but then I would have awakened the whole house. The crackling and popping was already bad just moving in bed, walking would have been too much. I just stayed there and thought about whether or not to get up later to help with breakfast. It would be the least I could do.”
I nodded, mistake, ow. “After I did my 15 minute checks for the next couple of hours or so I finally heard an alarm go off so I knew it was close to time for people to start moving. I figured it wouldn’t take much to make eggs and toast, and maybe some turkey sausage. The boy likes his turkey sausage.”
“How did you hear the alarm?”
“When I am fully awake and aware nothing can keep certain sounds out.”
“Even through the ear plugs?”
“Mhmm, even through them.”
“Did you crackle and pop?”
I smiled. “Yes. It’s pretty funny to me but makes other people sick at the sounds. A spine isn’t supposed to sound like that. I have to admit it makes me queasy at times.”
“The sounds do?”
“The sounds and the actual feeling that I guess generates the pop or maybe it’s the other way around. But there is this almost dull feeling that seems like it is linked directly to your stomach somehow to make you nauseous as the pop sounds. The crackling isn’t as sickening, but the popping gets to me sometimes.”
“How about walking, did you have any problems this time?”
I had to move as the hip pain became too much. He was patient as I adjusted to find a position that was less distracting. “I took it slow. Sat up slow, moved my legs off the side of the bed and sat there while I put on the glasses and then felt my way for the footboard. Then I slowly stood up”
“How was the sitting up this time?”
He remembered everything. “It was okay for a few seconds because it was a change and then the sharper pains started. That gets you moving faster to get up and get going.”
“Getting up quick still bothers you?”
“Yes. So I do it slowly and then stand there a few seconds to make sure the room isn’t spinning and I won’t fall down. Then I start the march to the kitchen.” I laughed to myself at the image of me marching because it would really be more like shuffling. I started making up a song about doing the old man dance.
“And you had no problems walking?”
I frowned slightly. “Other than the shuffling and pain I only had one moment of dizziness, if that’s what you mean. I made it about halfway across the living room before it hit. You just put your arms out to the side, bend your knees slightly and breathe. The wall and the couch have become my good friends.”
“And how did the cooking go?”
“Grandma had left things out just in case I decided to cook. Getting the eggs from the bottom shelf wasn’t fun, and the twisting to get the milk out was no joy either, but I managed.”
“How about the lights, did you have them on this time?”
16 tiles so far. “No. I was able to take my glasses off though. The moon was covered by clouds. I have cooking eggs for everyone down to a science now. I make them individually because everyone likes them differently. I washed up the things afterwards so Grandma wouldn’t do them. She does enough as it is.”
“Doesn’t cooking and doing the dishes still hurt you?”
“Ha, life hurts me, but yeah. But I feel like I have to help somehow and the dishes hurt her too.”
“Do they ask you to cook?”
I laughed. “No, they get mad when I do, but they enjoy the food. It’s a bit difficult to stop me once I get going if I really want to do something. I get stubborn and pay for it later.”
“Why do they get mad?”
“They know cooking hurts me and they are afraid I will hurt myself, and of course they know I will pay for it later.”
I rubbed my fingers together feeling the smooth new skin. “I burn my hands sometimes. I touch things that I once would not have. I usually don’t let them know though. It heals.”
“Then why do it?”
“Like I said, so I can help out.” I disliked repeating myself, but he knew that. “And it gives me something to do that is safe for the most part and if I can’t finish I can turn it over to them.”
“But if they don’t want you to cook then why put them through the worry?”
I could feel the blood begin flowing a little faster. I could respect anyone, but there were still times I just didn’t want to have to come up with answers or get too deep. “Because I want to be useful in the only way I can be. Some extra pain in the morning isn’t going to make a difference overall, and I can help get things going and people don’t have to rush around like maniacs to get ready for work and school.” I knew the words come out a little too fast, showing my rising temper. I needed to rein that back in, a hard thing to do when you are trying to hide all the other problems.
“Right before I fix the boys eggs, I make sure he’s awake and in front of the TV so he doesn’t fall back to sleep,” I said, rushing on so no more questions came. “He’s not a morning person at first. Give him about 15 minutes and he’s fine, but when you first wake him up he’s useless.” I smiled at the grumpy image in my mind of a burrowing boy.
“What does he think of the back noises?”
“Usually by the time he is awake the main noises stop and the TV sounds can disguise them. I also try to walk normal and not shuffle or stumble. I like him to get the idea of me being as normal as possible. 9 year olds need stability and security,” I said. “He did great handling the fall and everything but it scared him.”
“But I sit on the end of the couch while he eats, after we say the blessing of course,” I added quickly. “He won’t eat unless he remembers hearing it. He’ll even come and ask if it’s been said at times.”
“He’s a good boy.”
“He’s the best boy. Once he finished eating, after I reminded him a few times to eat, he got ready and I combed his hair for him. We both knew it was pointless because it will end up how it always does, but we have to get those bedtime spikes out of it. He has lucky hair.”
“Did he know you were hurting?”
I started counting the tiles again. “I’m sure he did. Sometimes I can’t quite hide it, but on school days I like him to be left with a picture of my being okay. I can muster up a little energy and the upbeat tone in my voice.” It’s time for a couple of deep breathing exercises from therapy to get through the pain spike.
“So the TV hid the spine noises?”
I laughed again, well not really, laughing hurts. “Yes, there was only the popping and it was quiet enough. I wake people up with it at night. Any time I am motionless for any length of time, my back objects loudly. So while he was brushing his teeth I got up and moved around a little, just enough so I could comb his hair and stuff and see him off.”
“What does the TV sounds do to you?”
“I put up with them to spend time with my son. It won’t kill me, at least not in a death sort of way.”
“What did you do after they left?”
“I nuked a couple of pieces of turkey sausage, ate, drank some milk so I could take my medications, and went back to my room.”
“Did you go back to sleep?”
“You know better than that,” I said. “I got my laptop out, read my emails quickly to make sure there was no teacher updates that I would have to make a quick cell phone call about, and then got into my Bible studies.”
“How long do you do those?”
“I don’t have a specific time limit. Like the pastors talk about, I chase rabbits a lot. That might be part of the concussion though. Maybe I just don’t focus enough, although I do well enough to guide Grandma around when she drives me places.”
“So after the studies what did you do?”
“Soon as it got light enough I checked that the cat was outside and fed her, otherwise other cats might get her food. She’s a great cat. She has the best talking voice.”
“So you are a cat person?”
11 more for 27 tiles so far. “I wasn’t or so I am told, but after the accident I became an animal person. TV wasn’t good for me, all that light and movement, all the sounds. Animals are nice to look at and are funny sometimes.”
“How often do you wear your glasses?”
“Whenever my eyes are open, but that freaks some people out. Wearing sunglasses at night or in a grocery store makes people look at you funny. It’s almost like they think I am a criminal. I rarely go into a store because I can’t get halfway through before I want to give up, but it’s a way to get out of the house sometimes.”
“And how is the sound doing you?”
“I put up with it more now. I know the headaches aren’t going away and they will be bad by the end of the day so I just keep the ear plugs in and try to enjoy what I can,” I said. “I don’t mean that I listen to music, or watch TV much, but I try to watch one particular show at times, and I have to speak with my family. I make a point to talk to my son and be goofy with him.”
“How does your son handle all of your problems?”
I felt the smooth object in my pocket. “He seems okay, but I know it’s hard on him. I let him help with the cooking whenever I can. It’s something we can do together and something that will be useful for him later as he grows up. But I know he can’t be crazy like some kids because the sounds will make things worse for me, but I don’t say anything about it if he gets loud. Like I said before, the headaches are going to be bad so enjoy things in the meantime. But how many 9 year olds can make an omelet or homemade vanilla wafers?”
“You’ve done your Bible studies and fed the cat, what did you do next?”
“I rested. I took my glasses off, put the pillow over my head, and let my mind think of all the things it could.”
“What did you think about?”
“What I had studied and the different ways it could be looked at, stories I work on every now and then when I feel like it, how to fix the country with all of its problems, what to cook for dinner if I felt like I was up to it, algebra problems I don’t know how to do.”
“You write stories?”
“Not very well, but I apparently tried before the fall. No one ever published them, but I tried. I’ve read the stuff I wrote before and I see why they weren’t picked up. But I mostly just think about what I would like to write. Then I start hurting and I have to start planning. Like yesterday I had to get up and get my medicines for lunch time and a protein bar and bring it to my room because I already knew I wouldn’t be able to handle sitting at the table and being around people at lunch.”
“You eat with Grandma, correct?”
“Yes. She makes my lunch, but I’ve started doing it whenever I can. She’s 69 and has her own problems. But she helps a lot. Whenever we go somewhere people look at me funny when I get out of her car because I look healthy and strong and we’re in a handicap spot, even though I get out on the passenger side, I still get the looks. Then Grandma gets out and it’s like everything is okay. Again, I feel like I am a criminal because I look healthy. No I don’t have a handicap tag on my car, but I’ve learned you can’t judge someone by how they look, or how they walk or act. In public I try to be normal, but it is very tiring to try and hide the pain coming from so many directions, my entire spine, the light, the sounds, my never ending headaches. I talk a lot to hide it all.”
I chuckle. “Yeah, like now.”
“Did you cook dinner?”
“Yeah, it was homemade pizza for everyone. Everyone likes something different and with the food allergies in the house it has to be homemade.”
“And how was the pain?”
“Making pizza crust is kind of easy once you get the hang of it, but it still requires some movements that don’t agree with me, but everyone enjoyed it. Then I went to bed.”
“You go to bed early every night?”
“No, just on bad pain days, or when the 24/7 low grade migraines turn into full blown rage monsters, in the hopes I can get easy enough to go to sleep. Sometimes I stay up late if I can to see if exhaustion will do the trick. But then having to take medications at bedtime with lots of water ends up waking my up sometime during the night and then the battle begins again.”
“What do you think about as you try to go to sleep?”
“Everything that pops into my head, I worry about things, and I think about things I miss out on.”
“What do you worry about?”
“I mainly worry about how I don’t contribute to the house or how my happiness will be in the future if things don’t get better, but that part I handle as just being a pity party, because I know things will improve. It’s just that when you are in the middle of pain moments it’s difficult to keep positive, but I usually do okay after a couple of minutes. But I don’t help financially. Everyone tells me not to worry about it, but that’s easier said than done. But then I force that out of my head and then I think about why people ignore me.”
“Who ignores you?”
“I’ve sent messages to people on the computer on special occasion days and give a quick blurb about my not remembering things, and I’ll never hear from them, although I know they’ve read the message. I know it is weird having someone you know having amnesia, but they are still normal people. I start to remember things all the time just not everything comes back at once.”
“Does it bother you that people don’t respond to you? Do you send them messages hoping they will reply?”
“I think the only reason it bothers me is that maybe they think badly of me, that maybe they think something happened to me because I was doing something wrong, like they think my accident was some type of illegal thing or something. I got a migraine, became dizzy, fell down, and next thing I knew I was in the hospital. I remember stuff in between now, like the ambulance, but things come and go. One of my doctors said that was normal.”
“Do you wish they would reply?”
“Maybe at first, I guess, with maybe just a ‘thanks’ or something like that. But after a time I have more to worry about than that. I have those that I love that I need to focus on, and so I do that. But I have looked at this all as a learning experience too.”
“What have you learned?”
“There are two positive things; one is that you can start over and the other is that I believe my walk with the Lord has grown. I don’t have all the old influences and memories to color my picture of life. There is no paint by number set so I am able to think about things differently. But then there is the negative like people with certain health issues are treated like a secret minority and are discriminated against at times, perhaps unintentionally so, but are. But don’t get me wrong, some people are great about it, but I see how there is definitely a weirdness out there. I am sure I was like that about people before on some level, and that shames me.”
“What will you do with what you’ve learned?”
“I haven’t really thought about it. But it seems like perhaps there should be some awareness made about it. I keep thinking to myself that there are so many things I would like to accomplish to help the world once my pain goes away, but then it doesn’t.”
“I am sure things will settle down eventually. I know your doctor is focusing on your quality of life now.”
I smiled. “When a doctor says they want to improve your quality of life that sends the message of ‘you are never going to get over this’ to me.”
“Just keep doing what he says and we’ll talk again.”
“I know.” I said. I lifted the pillow off of my face and opened my eyes. The bedroom ceiling tiles were still there. I had to move. The ‘conversation’ had left me in one position for too long. I sat upright and leaned forward. Too cook dinner or not? Not tonight, last night did me in. Besides I didn’t feel like food, but I didn’t want to be fed again, so I would at least get up and eat when it was time, but until then I rest. Rest as much as the pain would let me. I really needed my brain to rest.
I breathed and did the exercises to relax my spine and the stories began to come and then the Bible studies returned and the two begin to blend. I needed to rest, rest as long as I could before the first wake up of the night started the routine again. Maybe I would just go get a sandwich and call that dinner. Maybe I could get a head start on the sleep. No, I needed to stay up until they got home. Had to see how the boy did for the day. He probably traded another card for something else. Or maybe he rescued some more of his fellow students from bullies.
I slid my legs over the edge of the bed and sit for a moment…’improve your quality of life’, yeah.
My back crackled and popped. I looked up at and through the ceiling. I knew He was watching and could hear it. But He would still ask me about it the next time we had . . . a conversation.
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