How Does It Feel?

Chris and I were traveling down the road on the way to the grocery store.  That's one of the things we do together.  I'm entrusted with the task of making sure he doesn't spend all his life savings at the store... any store.  

On this day, with an unusual level of enthusiasm Chris said, "Guess what I saw the other day?!" 

"I don't know, what?" I was intrigued.  

"I saw a little person! Right there! Walking down the street! I had never seen one before."  He said it like it was an exhibit at the zoo - an Okapi.  He continued, "He was a student going to class.  I know because he had a backpack."  

"I saw the show on TLC - Little People Big World, but I'd never actually seen a little person.  That's what they like to be called, 'little people'. I know they don't like 'midget'.  I learned that.  I'd never call them that.  I'm nice.  I would have offered him a ride.  I'm very nice and I would have pulled over and offered him a ride." (Chris drives.)  

The irony of this whole conversation was not lost on me.  I was practically swimming in an ocean of it.  I considered the fact that Chris barely clears five foot in a pair of good shoes.  I marveled internally at his obliviousness to the fact that he was perpetuating the same reaction he'd fought so hard against all his life.  How many times had he been gawked at by bystanders? Was this the reason he deemed it okay, saying, " I've been treated this way all my life.  It's the norm.  It's okay." or was it that he just didn't get how ironic his reaction was.  I genuinely believe it's the latter.  

At this point my social worker instincts kicked in and I posed a safety thought in his path, "You know Chris, just because he's a little person doesn't necessarily mean he's nice.  You know I think that because you have a rule not to let strangers in your car that you should stick with that regardless of their height."

"Oh I know.  Oh I would get to know him.  I would pull over while he was walking to class.  I would open my door and I would say, 'Hey.  How does it feel to be a dwarf?'.  That's was I would say, dwarf, not midget.  Because I know they don't like 'midget' and I'd never call them that."

I fought with everything in me not to laugh - not to lose control of the car in such violent laughter - with the image in my mind of a middle-aged person in a small SUV pulling off the side of the road, opening his door to a non-suspecting little person.  The door would open the same way a minivan door does in a drive-by kidnapping.  Then the question, "How does it feel to be a dwarf?" and that's all.  Silence.  I debated whether to innocent pedestrian would give him the finger, tell him to fuck off, call him a jack ass or all three.  I was leaning toward all three.  

I didn't want to kill his spirit of friendliness, but perhaps challenge his thinking a little.  I said, "You know Chris, I think that little people would like to be treated like everybody else and maybe asking 'How does it feel...'"

"Oh I know!" He interjected, "I would treat him just like everybody else. I'm nice.  That's what I'd do."

I considered him driving up to a stranger, flinging the door open and asking, "How does it feel to be of average height?"  I could see the dilemma in his statement, but he never could.  So, if you happen to be a person of somewhat shorter stature and are approached as if you might be kidnapped in a drive by door flinging open experience in which you're asked the most personal of questions.  Just know, it's not personal.  Chris just wants to get to know you and maybe offer you a ride.

I had been working with Lance for a month. I came on board with the understanding that he was amongst a great deal of change. He had recently graduated from a reputable school for individuals with disabilities in the city. A big, "What's Next?" rested over his head to the extent that I could not fully grasp. This is the delimma that so many people with special needs face. They are no where near ready to be in some sort of group home or institution or what have you. They are finished with whatever structural state programs are available to them. They are 21 and the state is through with them. Good-bye. Good Luck. Parents and individuals face the tedious endeavor of figuring out whether they should/could get a job, be placed in a residential setting, stay home, and a million other questions no one can fathom until they have gone through it.

He also had rods in his back that helped stabalize his waivering frame. He could not sit up on his own without them. This was a poor substitute for a functioning muscular/skeletal structure. It is all science has now and it had failed him, like so many other medical attempts. Medicine has come so far and has so far to go. The rods were infected. They had to come out so it would not spread. So, a little after a month after he and I were aquainted, he went to the hospital to have it removed. His back had been sliced down the middle nearly the full length of his back. Mom warned the surgeon that he had very little skin to work with. Like so many other parents, she wasn't taken very serious. Consequently, when they went to sew him up there wasn't enough skin and a plastic surgeon had to be called in to "find" some more.

He came back home as someone I didn't recognize. That was most painful for his family. It wasn't any appearance that was foreign. It was his demeanor that was so different. He is a cheerful, happy person. Now he was exhausted, frustrated, limited. You think, how much more limited can some who has a diagnosis "non-verbal" and rolls in a power chair get? The answer is, alot. Especially if you're Lance. Lance does marathons with his Dad and friends. He swims with dolphins. He rides in gliders and race cars. He's just shy of sky diving. Seeing him with tubes and wires, awake for only parts of the day was disheartning. Seeing his level of frustration peak when he was pushed to try and try again with little tasks was daunting.

It felt like endless trips to the doctor continued until he was able to get his stitches out. His mom, Lance and I all went. Having been traumatized with painful and comprehensive proceedures all his life, every trip to the doctor was torture for him. "What will they do to me this time?" he seemed to wonder. He often cried and thrashed about. And so it was as they painlessly took the stitches out. How did he know it wasn't going to hurt. It's excrutiating being so vulnerable.

We brought him the hour and half home from the world class hospital where they'd been taking care of him. His stitches were out. He had lunch. I remember him laughing at his mom and I as we transported him from the chair to his bed for his afternoon rest. I remember this because it was so juxtaposed to what was actually happening. He lay in his bed. It was time for me to move on to my next client so his mom tended to him while I went to the bathroom before leaving. As I washed my hands. I heard a suttle "Oh no." come from his mother, in the bedroom. Then an "Oh God. Oh God. Oh God. Oh God."

"What is it?" I came running into the room.

She stood a distance away, staring.

I stood and followed the path of her eyes to Lance, his white tee-shirt, a pool of blood.

All of this happened in seconds. A period of disjointed phrases, understanding, uttered familiarity, underlying panic submerged in remarkable calm. All of these things passed between us like a ball in the hands of clumsy children.

"Okay..." As if, "here we are, now lets figure this out.".  One of us decided the shirt had to come off.  One of us found scissors. Both of us saw the gapping mass -the great void- going down the length of his back. I had never seen so deep into a live, conscious person and realized this is because one is not supposed to see so deep into a live, conscious person. His back lay open. There was skin, muscule, bone (?), a lot of blood. There was no putting pressure on the wound when the wound is over a foot long. I thought to myself, "I have first aid training. I must have slept through the part that discussed the GIANT GAPPING SPINAL LACERATION!!!". The back needed to be closed (obviously). The only things we had going for us was that he was on his stomach and was not actively bleeding out. Miraculous. It was also a plus that he could not see or touch his wound because there's no other way to explain it: he would have flipped shit. He had already reduced himself to tears as we found tape and proceeded to tape his back shut He sensed the panic that had decended on the room and cried unconsolably at what he could not understand. He must have thought, "What is happening to me?". His mother called his father. I refused to leave. She called the hospital where the surgery and all the follow-up work was done. They wanted him to come back to have the "repairs" done. They wanted to cover their tracks.  

His father came home. Emergencies were not foreign to them. He covered his panic well. They had to transport him to the hospital in the wheel chair accessible van which meant he had to be put in his chair, sitting up. They drove seperately to the hospital. I didn't go. My work day was only half over. I had to go work with Julian still. Hell of a start to the day.

My adrinalin was sky high - through the roof. As I continued through my day my petitions to God were non-stop and repetitive. "Dear God, don't let him bleed out." Over and over for hours on end. I was sure that if science, logic or gravity had anything to say about this, he'd bleed out before he made it through the doors of the hospital.

Later, I got a call. Lance made it through. He was all sewn up again. He hadn't bled very much on the way down or waiting for the doctors to come see him. I didn't know how it was logically possible, but I was grateful. Turns out that the surgeon didn't sew as comprehensively as usual after the surgery. He didn't want any of the infection to adhere to the stitching. Consequently, it didn't heal typically without the usual stitching.

The surgeon never sent a bill to his family.  Apparently he filed it under "Learning About Cerebral Pausy."  It's nice to be able to label your mistakes as pro bono.

Lance has recovered fully. He's less stable than he was before the rod was taken out, but he has come full circle to the cheerful person he was before.

Please Understand

The Following is from an older blog I did some time ago:

One of my guys needs an apartment so that's where I come in. I help find that place. The search has been a tedious one, but most people are accomodating and kind. I do online searches, word of mouth and even newspaper hunts. One newspaper I was looking through showed an advertisement for a reasonably priced 1 bed room. I gave a ring and left a message, hoping to set up an appointment soon. The next day I got a ring back from a kindly sounding man who inquired about me needing a 1 bedroom for myself. I explained that I worked for an agency and what my purpose was. Understandably he wanted to know more about the agency and how this individual would be able to pay for this place. I explained what we do and that the agency itself would be paying for the place, to which he wanted to know if the gentleman was "section 8". (Section 8 is subsidized housing for people in need financially and/or because of disabilities.) I explained that he was not, but that the payment for the place was similiar to section 8 because you could definitely guarantee the money would be there since it was coming from an agency. Then the man said,"I'm just concerned about section 8 people being a disturbance to the other tenants.""I don't follow" I said, but I was afraid I really did follow, but didn't want to."You know. I've seen it time and time again. Section 8 people are a disturbance to the other tenants around them.""I'm sorry I still don't understand what you mean by disturbance.""Yelling, screaming, filth, trash every where. I wouldn't want to live next to that. Would you?" He said abrasively."Well no I would not, but I can assure you that this is not something you'd have to worry about with this individual." I couldn't believe what I was hearing."I've just seen this over and over again with people who are on section 8 and I don't want to bring that to my place."I was furious. "So are you going to meet this person and show them you're apartment or are you not even willing to show them your place because they're of a financial position to where they would need the services of section 8.""No. I'm not going to show him my apartment."With that I hung up the phone.One adult male human being had just stereotyped a whole demographic population. He had just seriously told me that people who need assistance from the government to pay their rent were filthy, disruptive and not worth giving the benefit of a doubt or the time of day. The year: 2007. The belief: not that far from precivil rights, presocial services boom of the early 20th century. There are still people that walk this earth and fear people with special needs. They fear the poor. They fear what they do not understand. " Do not wax indignation. Understand."Maybe the next time you see someone who acts a little different from what you're used to seeing, don't let the fear of what you don't understand define that moment. Just know that they're on your level even if they can't convey that. Maybe you walk this walk every day of your life, then thanks for being one more voice and one more body to offset the ignorance that still plagues our society. I'm not naive. I know this world is full of ignorant people. I guess sometimes you just hope for a bit more.

Dien Bien Phu

My day began with country music.  That's what The General told me he liked to listen to when I picked him up for an a.m. appointment.  I had met him before, but never got to know him.  Our rush-hour-traffic car ride to his Psych visit gave me the opportunity I'd previously lacked. 

He began by telling me that he paints nails - as in finger nails.  This is all well and fine, but not something you expect to hear from an unkempt, middle-aged man with a mustache and secondhand Redskin's sweat shirt.  This was to be one of many surprises.  I asked where he got this interest from.  He told me about some instance where he found himself in a salon surrounded by "thousands" of bottles of nail polish.  He saw these nails being painted.  He liked it.  He thought, "I could do that." and vowed to learn.  "I have 'Champagne Charade Pink' at home", He said without an inkling of femininity or humor to his voice.  

"Wow. I like dark colors a lot." I said.  (I often find I can self-indulge in conversations with the people I work with that I just can't have with anyone else, the same way I can sing completely uninhibited in the car with the people I work with.  This is much to their dismay. I'm sure.)  "I'll show you." I took off my gloves. "See? It's Purple.  It looks black, but it's actually purple." 

"You know one thing you are definitely doing wrong?" He rebuked.  I was concerned he noticed the  way I painted outside the lines.  "What?"

"Do you have the top coat on?" 

"Yes."

"Oh. Nevermind. I was thinking I might like to go to beautician school some day."

I imagined a 20-something trend setting woman coming to him for all her beauty needs. It seemed like my dream of training my pet frog to be a kung-fu master ninja that would rob a candy store, drive the get away car and give me the booty.  Improbable, but awesome.  Who am I to stifle dreams? Nobody.

"That sounds great." I said.

We continued on the ride to the appointment talking about this and that - things we liked and didn't like.  He sipped his small Dunkin Donuts coffee and I gulped my large Starbucks.  

"I've worked for the grocery store for 21 years. And next year I get 4 more vacation days."

"Wow. How many do you have now?"

"Four."

"What do you like to do on those vacations."

"Oh, read and go to the Y."

"What do you read?"

"Right now? I'm reading 'The Great War: 1914-1918'"

I knew this was true.  I had seen it on the floor through the crack in his apartment door while he made me wait outside for him.  It was book marked mid-way through.  He shared with me about various battles and wars on our ride.

"I know one thing.  I don't believe we should be in Iraq."  He scoffed.  It is one thing to digest, retain and regurgitate mass volumes on history.  It is another to understand the complexities of current world affairs and tout observations.  I was intrigued.  "Why do you believe that?" I asked.  "I think we have to let the Iraqi's solve their own problems.  It'll be another Dien Bien Phu (For those of you not up on your history see the link for Wikipedia.). And if we keep having casualties over there, were not going to have an army."

"Dien Bien Phu?  Where was that fought?"  I embarrassingly asked.

"Vietnam."  

By this point we'd made it back to his house from the appointment.  He had to go in, change his shirt and come back to the car so I could take him to work.  I made him promise me he'd tell me all about that battle when he came back.  He did.  He recited his knowledge with the poise of a grade school student. "Okay. The Battle of Dien Bien Phu.  The Battle of Dien Bien Phu was...", He began.

As he divulged his explanation I was awestruck at his insight.  Was his point debatable? Absolutely.  The point was not that it was fault proof or whether he was right or wrong, but that he had a well founded opinion.  No.  Furthermore, he had a well educated opinion based on the solid grounding of history itself.  He reached back in time for a reference that was not only applicable to the current situation, but strikingly intuitive to our future situation in Iraq.  In a world full of people who ignorantly scream, "I say 'Blow 'em all up'.", "No. We can't 'cut and run." or "We have to get out now.",  he connects a complex tie between two points in history to make an educated and informed decision.  Yet, society say he's the mentally challenged one.

 

Teeny Weeny Blue Bikini

I had just turned twenty when I became a social worker.  I knew nothing... about anything.  I had been hooked up with a family that really functioned well as a unit.  Mom and Dad were in the picture all the time.  During the summer they spent a great deal of time at the community pool.  I understood that part of what I was supposed to do was help out with the kids at the pool and the rest was helping out at their home.  

I had no vision primarily because I had little idea what I should be doing.    If someone told me what to do then I could do it.  I was smart and a quick learner, but innovative, I was not.  I also had no concept of how to present myself in a professional fashion.  This led to a major faux pa on my part.  This family was conservative and very devote in their beliefs.  Now, if I approached a family like this now I would have read that instantly and adjusted myself to accommodate.  I came from a background like this, so it would have been easy.  Yet, at the time I was self-absorbed in my newfound independence as an adult that I had little regard for sociological analysis of others.  

I wanted to do what I wanted to do and look the way I wanted to look.  Who cares what anyone else thinks?  Simultaneously, I wanted to look professional at my job.  Not because it was a way to convey competency through appearance, but because I had a new and important job and that was really cool.  So, naturally, in a family of rough-housing, busy kids with conservative parents what would a social worker wear, but the smallest bikini possible and perhaps a really nice pare of pants and shirt.  

At the pool I frolicked about in - no -not a sensible one-piece or even a modest two-piece, but a tiny, miniscule, blue bikini. I could barely stuff my ass in the bottoms and lacked enough goods to fill the top.  It was a spectacle for sure.  At the house I wore nice clothes not at all fitting to romp around with kids in.  

They liked to garden and one day I realized I didn't have the appropriate attire so I just decided to garden in my bikini.  Why not? Right?  The mom was gardening with us and a neighbor from church came over to chat with her.  On hands and knees (I was no stranger to weeding in my country upbringing) in some kinky southern boy's fantasy I heaved and hoed, pulled and tugged.  This was not what these northern, conservative mothers wanted to see.  

After that it wasn't long before I received a notice from my supervisor that this family didn't require my services anymore.  They just didn't feel like it was working out.  Thanks, but no thanks.  

This was my first of many lessons that ushered me into the foreign territory of an adult career.  Some were less painful than others.  Most were less painful than this one.

Hot For Teacher

One of my jobs can be to help a person develop a great sense of hygiene.  In one particular case I had to help Julian shower comprehensively.  This meant I would just check in on him and direct him verbally to wash here or there, wash his hair, rinse thoroughly, etc.  I always had to remind him to dry off really well.  He was normally concentrating on something else, something far more important like the news, a memory or who knows what.  He would pace about his room, water dripping off.  I entered his room on one occasion and before I could say a word he exclaimed, "Kristen!". (Okay, let me interrupt myself to explain that this man has a library of music in his head and there is no telling when a music video or song will burst through.) 

"Yes Julian!" I exclaimed back.  I knew it must be important and awesome.  It normally was.

He was toweringly tall.  He expanded his arms as wide as possible gave me jazz fingers, a cheshire smile and there in all his naked, sopping wet glory exclaimed, "HOT FOR TEACHER!"  "Wow!" I said, told him to get dressed, left the room having no idea what just happened.  This also happened often.  

Later that night I went home to my husband.  I said, "Hun, you know what 'Hot for teacher' is?" "Yeah. Why?"

I explained to him the events that had transpired in the past few hours.  He lost it laughing.  He explained to me that Eddie Van Halen had a song by that title and at the very end of the music video he did that very same movement (mind you, with clothes on, but still, the very same movement).  Sometime in the future I saw this video with Julian and it all became clear, but I'll never forget the image of him naked in his room reenacting "HOT FOR TEACHER". 

Who I Am - What I Do

I am a social worker.  That's  a broad term.  I work one on one with individuals with special needs.  (Secretly, I think we all have special needs.)  I have six people I work with.  They all range tremendously.  Some use vocal chords and some don't.  Some can walk and some can't.  Some have a tremendous amount of physical needs and some have a tremendous amount of social needs.  

I am never bored and I am never quite sure what each day will bring.  I may have an idea only to have fate laugh in my face.  I normally laugh along.  It's about all one can do and most of the time it's hilarious anyway.  

Since I'm often asked to repeat what happens in my job to people I on a regular basis, I thought I'd start this blog.  I have changed the names.  I want to honor the people I work with and would never want to make light of them more than I would make light of my own self or situations.  We are all equals.  The comedy in these stories is not meant to entice a finger pointing laugh out loud reaction to the people I work with, but really to appreciate the hilarity of life itself and how we all have our own ways of dealing with its great comedies and tragedies.

I hope you enjoy these stories as much as i enjoy my work.