Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Thursday, May 26, 2011

I wish a title could hint at the incredible pain I'm trying to describe

I wake up to the sound of the bedroom door opening, several yards away from me.  I hear Sean pause in the doorway, probably looking at me, surprised to find me there.

I wince.  I can see the light shining brightly through the window even through my closed eyelids.  I can’t talk.  Everything hurts.  He walks into the office, probably assuming I’m still asleep.  It usually takes me a few seconds to regain the ability to talk in the morning, but today I’m having a nonverbal episode.  It will take several minutes before I can talk.

I’m on the floor in my living room, lying in the narrow space between the couch and coffee table where I had settled last night when I realized I couldn’t walk to the bedroom.  There is no denying the amount of pain in my back.  It’s harsh and unbearable.  I try briefly to sit up but I’m only inches off the ground when the muscles in my thighs and back spasm violently and I fall back down.

I have a pillow under me but it offers little comfort.  I had managed to drag a quilt over myself before I went to sleep last night, and spent hours staring at the ceiling and petting the kitten, who was unusually friendly as if she felt sorry to see me in such a horrible state.  The kitten was gone when I woke up, but when she hears me moving she runs from the hallway and sniffs my tear-stained face before curling up on the floor next to me.  I stroke her short multicolored fur wordlessly.  I was grateful for her presence last night.  She normally only sits still with me for fifteen minutes at a time but last night she spent hours sitting next to me.  She didn’t even get offended when I had to shift, which normally irritated her enough to make her leave in a huff.  Last night when my legs started to cramp or spasm and I had to move, she would stand up and wait for me to get comfortable before she sat back down again.  She knew I was hurt.

In the other room Sean is talking to someone whose voice sounds hollow and robotic.  I don’t know what time it is, but he should be at work or getting ready for it.  It sounds like one of his meetings, although I can’t be sure since I can’t make out any distinct words.  He must have decided to work from home today.

My back spasms cruelly as I shift my leg so it doesn’t press into the leg of the table.  I hold back a scream.  Even resting I feel like I've been beaten, like people kicked me in my back and legs for hours.  My pills are in the bedroom, so far away from where I’m trapped.  Sean is the only other person in the apartment, and I can’t call for him because I can’t talk right now, and I wonder if it would disrupt his meeting.  I take a deep breath, hissing in the air through my teeth, and carefully assess my situation.

My head is pointed towards the wall and I’m in a narrow space where it’s difficult to roll over.  My only way to escape is to sit up and drag myself towards the bedroom.  This will be difficult, because the muscles in my lower back and thighs, which I usually use to stabilize myself when standing or walking, are so sore that they are useless.  I still can’t completely make sense of this.

I had cortisone injections in February, but it’s May now.  They are good for three months.  I had them in my upper back, where the worst of my pain was at the time, where I had two bulged discs.  It’s not a good sign to need cortisone shots when you’re just 22, and believe me when I say you have to be really desperate and in pain to be willing to have someone jab you repeatedly in the back with needles while people try to keep you from moving.  It was a terrifying day but I was at the end of my rope then, convinced I was going to die soon, and I probably would have since I was taking 10 Vicodin a day, the 7.5/750 dose.  The codeine wouldn’t have hurt me but I was taking more than enough Tylenol to destroy my liver, and the pills did nothing for the pain and none of the doctors believed me.  I think they believed me a little more when I had the shots, and I went quickly from 10 pills a day to two 10 mg Vicodin that could easily manage my pain.  I rarely needed pills every day after that, and I’m still on the same bottle of pills now that I was prescribed after my procedure.

But it’s time for another round of shots.  My body told me that two weeks ago.  My mother scheduled an appointment, but I can’t go in till Thursday.  It’s Tuesday now.  I have six Vicodin left, six precious little pills that will do nothing to save me from this pain, and only one Flexeril.  I ordered refills last night through the Walgreen’s website but I need doctor approval and I’m not sure if I’ve proved myself to my doctor or if he still thinks I’m being irresponsible with my pills.  I allowed myself very few pills yesterday and it’s costing me today. 

The back has been bad for a while now.  It aches at the bulged discs in the thoracic region, where I had my injections last time, and it aches even worse in the discs in the lumbar region, which are both bulging and degenerated.  It causes sciatica, which sends nerve pain to my buttocks, hips, and through my entire leg.  I usually deal with this with Aleve and Vicodin, and I cut my Flexeril and take half when the sciatica makes my muscles spasm.  I normally find hot baths can relieve a great deal of the pain without the necessity of medicine, but that was useless earlier this week.  Our tiny, useless, 15-year-old water heater finally broke, and it took a while to convince the apartment management that this was in fact a problem. 

It’s worth mentioning that I’m a horrible slob, and to be fair so is Sean.  I’m normally the one who cleans the apartment and I let it slide badly over the last two semesters, due both to my disability and homework overload more recently.  I haven’t caught up with it since the semester ended because I didn’t know where to start.  But the owner was coming to look at the hot water heater yesterday morning, so I stayed up the entire night before cleaning.  I put away the Christmas tree that the cats had partially dismantled over the months since Christmas.  I picked up the graded papers, tests, and junk mail we had scattered all over the apartment and threw them away.  I worked hard.  Sean had done the kitchen before he went to bed.  I cleaned the living room, library, dining room, and bathroom from midnight to 7 AM.  They looked almost perfect by the time I was done.  I didn’t have time for the bedroom and office, but I could close the doors.

When Sean woke up the only thing I had left to do was the vacuuming.  But by that point I was so physically exhausted that I was shaking.  I hadn’t taken pain pills since I had started and my nerves were all screaming.  Sean was horrified when he found me, shaking from dehydration, hunger, and lack of energy.   The muscles in my legs were weak.  I remember my thighs shaking, the muscles repeatedly giving out.  Sean had to help me to the couch, get me food, and set me up with what I needed for the day before he could leave for work, because there was no way I was making it off the couch until he got home.  The landlord came at 9 and confirmed that our water heater was busted, and between 11 AM and 6 PM a newer, larger water heater was installed.  I was exhausted and spent most of my time not moving and reading the Hunger Games e-books Sean had given me to keep me busy and not depressed.  I hurt horribly, but I had accomplished what I had wanted to and that made me happy.  I was supposed to take a long, hot bath but I fell asleep from exhaustion before I could.  Hours later Sean laid down for bed and I woke up and felt the most horrible pain I had ever experienced.  I don’t know what caused it, but my thighs were now aching horribly where they had felt weak before.  I couldn’t sit up.  If you’ve ever had a torn or strained muscle, imagine feeling that in 50% of your thigh and over your entire back.  That’s what I felt, along with the normal pain in my spine that felt like grinding bones, and along with the nerve pain in my back and my legs.  I don’t know what happened but  my guess is that I had violent muscle spasms while I was sleeping and my leg muscles were damaged.

Sean carried me to the bathtub and I had a horrible meltdown when I discovered the water only got up to 90 degrees, not hot enough to relax muscles.  This triggered an argument, and by the time Sean figured out how to turn up the temperature on the heater I was angry and just wanted out of the tub.  He went to sleep and I stayed out in the living room, fuming and continuing the book I’d been reading.

The pain kept getting worse, and when I was tired I realized I couldn’t make it to the bedroom without calling him for help.  I rolled onto the floor, where I fell with a wince, and settled down for the night.  It was hard to sleep.  The floor wasn’t comfy and every which way I laid only made another part of my body hurt.  The muscles in my thighs felt like rocks under my skin when I touched them.  And then I woke to find myself trapped on the floor. 

I’m in incredible pain.  I’m hungry.  I’m thirsty.  I have to use the toilet.  I’m lonely.  I’m scared.  I have options.  I could find my pills.  I’m pretty sure they’re in the bedroom on top of my dresser.  I could call Sean, because I think I can talk now, but loudness will disrupt his meeting and I should probably only talk to him softly, which means I would need to stand by the door.  He doesn’t seem to hear me crying so I will have to be closer to get his attention.  I can’t cook so I would have to ask him for food.  I could take a hot bath.  I definitely need a toilet, as soon as possible.  Everything I need is on the other side of the apartment, and suddenly that seems like a tragically long distance.  But at least I know where I need to go.  The bathroom, office, and bedroom doors all meet at a close point, so I need to get there, ask Sean for food and medicine, and use the toilet and take a hot bath.

I know I need to move.  I try again to sit up and let out a shriek, then a hiss, then a whimper as I fall back to the pillow.  The kitten watches me, transfixed, and I sit up again, crying, and manage to get into a kneeling position before I fall flat on my face.  At least I’m pointing towards the hallway now.
I make a few more feeble attempts to stand, each ending in failure.  My legs are useless now.  My spine offers little support.  I give up and start crawling.  It’s painful still and strains my sore thighs to an almost unbearable point, and the shag carpet feels scratchy and harsh on my legs and hands, but I can do it and I can take my time.

I crawl slowly out from under the quilt, keeping my eyes down because I can’t look at the hallway and see how far I have left to go.  I feel like I’m regressing into childhood or into animalism and I hate it that my humiliation has come this far.  I don’t know how long I crawl.  I have to take a rest between the kitchen and dining room.  I start again and eventually I make it to the short L-shaped hallway.  I can hear Sean talking more clearly now but it all sounds like technical nonsense and I am afraid to ask him for anything.  I crawl into the bathroom.

The linoleum is cold on my hands.  My knee lands on the hard surface and it hurts like it always does when I kneel on non-carpeted floors, but then my knee pops out of place.  I think I scream and I lift my leg up but the knee pops back into place and I’m left lying face-down on the bathroom floor, watching strands of my messy red hair move in front of my face as I breathe.  I’m touching the toilet.

I try to sit up, but once I’m in a sitting position my back spasms and I can’t continue, even using the sink and toilet to raise myself into a standing position.  The muscles in my thighs and lower back tighten unforgivingly.  I stare at the floor in disbelief.  I should have known.  I couldn’t properly sit or stand in the living room.  What made me think it would work once I  got here?  And I am angry at myself, angry for wasting the time and energy and nearly killing myself to get to the bathroom when I couldn’t even get onto the toilet. 

I fall back to the floor, tears streaming silently down my cheeks and forming small droplets on the floor.  I hate myself for being so stupid, for being disabled in the first place, for insisting on cleaning yesterday even if it desperately needed to be done.  I have no idea if Sean will hear me from here and I hope he’s done with his meeting soon.

I lay on the floor for several minutes and I’m starting to nod off when the talking stops and the office door opens.  Sean stops in the doorway and I know he’s staring down at me and that he didn’t expect to find me face-down on the bathroom floor.

“Hi,” I say weakly. “Once I got here I realized I couldn’t get on the toilet anyway.”

“Kat,” he says in a strained voice, and I can’t tell if he’s disappointed, annoyed, or just sad to see me looking so pathetic.

“What time is it?” I ask.

“Almost 1.  I was sick so I worked from home today.”

I remember now that he’s been coughing a lot.  I hadn’t completely realized that he was sick, and I feel incredibly guilty for not noticing and for being too distracted by my own pain.  He had noticed my pain.  He’d been taking care of me.

“Do you want me to help you up?” he asks.

“Yes,” I say. “I’m not sure how to get up though.”  I try scooting closer to him so that he can grab me more easily but when I accidentally tense my right leg I scream, curse, drop still and try not to move again.  It will be hard for him to help me because I’m in a bad position and blocking the doorway.

He grabs me from behind under the armpits and pulls me into a sitting position.  My legs are in front of me.  “I can’t kneel,” I say. “It hurts my legs.  That’s why I can’t get up.”

He steps over my shoulder, putting his foot between my legs, and lifts his other leg over me so that he’s standing in front of me.  “What do you want me to do?” he asks.  “Do you want to be in the tub?”

“Need to pee,” I say. “Toilet will hurt my legs though.”

“How do you want me to help you?”

I try to clear my head, try to ignore the pain and focus on strategy.  “I can’t kneel.  You have to pull me from here directly into a standing position.”

He grabs my hands.  “Ready?” he asks.  I nod and he pulls me up.  At first it’s okay without having to use my legs but when I need my thighs to support my weight I start to fall forwards and I crash into him.  He catches me before I can collapse and I’m crying more openly now.  My cami has slid down and I’m exposed.  Sean reaches down and covers me back up, and he shifts me sideways.  It hurts every time I have to set my feet down but he manages to lower me onto the toilet in a sitting position.

“Ohgodohgodohgod,” I moan as the hard plastic of the toilet seat sinks oppressively into the flesh of my sore thighs.

“When’s the last time you had a Vicodin?” Sean asks.

“Fuck.  Last night?  I think they’re in the bedroom.”

“I’ll look for them,” he said, and he disappeared.  Alone, I use the toilet and stare at the floor when I’m done.  Sean brings me a glass of water and medicine and I take it gratefully even though I don’t know if my prescriptions are refilled or if I need to save the pill for an emergency.  This is the very definition of an emergency.

I explain to him what happened.  He sits on the edge of the bathtub.  “Do you want me to take you to the hospital?” he asks.

It sounds like a good idea.  I used to go to the hospital for my back pain, and this is definitely the worst pain I’ve ever had.  But I shake my head and smile even though it isn’t funny.  “They won’t believe me.  They never believe me.”  ERs are full of doctors who have never experienced pain that Tylenol wouldn’t fix, and a very young woman coming into the ER, unemployed and claiming to be disabled, acting abnormal, claiming to have pain but it doesn’t show up well on x-ray and she appears physically unharmed...I guess I look like an addict.  It’s hard for them to identify with me since it’s hard for anyone to imagine pain that large amounts of Vicodin won’t help.  It’s hard to believe that a 22-year-old has pain at all because that’s too young to have back pain.  No one wants to believe that the pain exists, and I don’t think I give them the emotional reaction they expect from someone who is in incredible pain.  It’s hard for people to identify with my suffering because my face doesn’t always display the emotions I’m experiencing.  I can feel the pain and I can describe it but I can’t act like a person in pain would normally act.  I tell them I have autism but they don’t know what that means, and they normally tell me I don’t look autistic or that I must be mistaken.  So doctors are useless at best, and irritating little pests who yell at me at worst.  One doctor at Memorial Hospital told me I should be ashamed of myself for thinking that hospitals were there to keep me from being in pain.  I’m pretty sure he thought I was an addict.

I close my eyes and wish that the doctors at the pain clinic could see me sooner, so it wouldn’t matter that I have so little Vicodin.  And because when I limped into their office they believed I was telling the truth, maybe because no one walks into that office unless their pain is very real.  The pain clinic doesn’t hand out oral medicine.  The only do interventional medicine, cortisone injections and the like.  Those are useless to addicts but a few days after they saw me for the first time I was walking around without help again.

“The hot water is working again,” Sean says softly. “Do you want to get in the tub?”

I nod and he helps me up and tries to lower me carefully into the tub.  I slip out of his grip when I’m nearly completely down and I land with a soft thud, but I just laugh.  “This water had better be worth it.”

It comes out pleasantly hot and I nearly overfill the tub because I want it to touch every inch of my body.  Sean sits on the toilet watching me, but I’m not good company today.  I just stare into space, wondering why I have to suffer through so much pain. 

He goes back to work and comes back when I call him to help me out of the tub.  I lay in the bed and Sean brings me the PS3 controller, my laptop, a fresh soda, my pills, even the small calico kitten.  I check my e-mail and to my relief my doctor approved the refills and they’re waiting for me at the pharmacy.  I haven’t eaten since yesterday in the afternoon, so Sean takes my wallet and heads to Walgreen’s to pick up the prescription.  I want him to have my ID to prove I authorized him to get my drugs.  He comes back with a sandwich for Subway and the drugs, and says they only asked him my birthday.  But he’s picked up drugs for me before.  When I really need them it usually means leaving the house is far more difficult.

He cuddles with me and I can feel what little relief the Vicodin had offered already wearing off.  I tell him that, and I try not to whine because I know he can’t do anything about it.

“A day and a half,” he says, stroking my messy hair.

I hug him and nod, but I don’t know if I can make it till Thursday morning.  Because I remember now something that I had forced myself to forget in February when the last round of injections healed my pain.  I had forgotten that there is a certain level of pain that makes you certain that pain alone can kill you, and if you stay there long enough you start to accept your fate. 

“I guess we’re just going to have to prepare for this to happen every three months,” Sean says.

“Yeah,” I say softly, and I wish I could defeat the pain altogether instead of banishing it for a short time.  But this is the best I have.  I hope pain can’t really kill a person over time.

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