Tuesday, November 4, 2008

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.