my friend

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I work with disabled people.. one in particular has taught me so much, so much about happiness and being thankful for what we have and for not taking anything for granted.

This man is my age, he calls me Mum which is funny, yet he cannot speak. He relies on a communication book and the voice of the staff member that is on at that time, he can make sounds but has long since lost the ability to speak clearly. Sometimes I can make out his speech if I listen carefully.

How could I survive without being able to walk, talk speak or use my hands? What sort of life would it be for me to be reliant on staff members for my EVERY NEED ? What about dignity and self respect? Would I still have it? Yes he's got a wheel chair but has to rely on people to put him in it, he cannot move his arms or legs and has limited movement of his head.. Would it be like being trapped in my body? Would I wish to die? How would I cope?

I watched a program with him the other day about a man who had lost the use of his legs after being a marathon runner.. I questioned my friend regarding whether he thought it would be harder for him, being used to being like he is, or the runner losing the power of his legs.. My friend anwered, that he would rather have been able to run and lose it, than never know what it is like to run, only being able to imagine what it's like

I watch him with other people, he's the one with the smile, the cheeky grin and twinkle.. He's so intelligent, I took him to a training day a couple weeks ago, and his comments blew me away... often I assume because he can't speak, he also cannot think, that is so very untrue

How much more then is it unfair and cruel to be trapped like he is.. His hopes and dreams are to have a partner and family.. to live in a normal house with normal lifestyle, yet how on earth could that ever be realised? It takes two people to lift him, so the availability of personal space (having to have someone there all the time) is limited.. He can't cook, or phone anyone, can't use a cell phone or playstation, can't turn the tv or radio on by himself, can't make himself a coffee if he wants one, has to ask for a wine/beer .. I cannot imagine living like this.. He has to have someone feed him and pour liquid down his throat.. he has to ask to go to the toilet, has a space in his book where he say's "please scratch my head" ... can you imagine that? What if they itch in the wrong place? Imagine the powerlessness he feels at night .. he cannot get out of bed in an emergency, if the lights/power goes off he is stuck .. in thunder storms he is terrified, but we only just found this out last month, so how many has he endured without comfort?

He was an institution inmate for years.. how much did he see and hear? He has stories from those days that make me physically ill, how many more nightmares has he got within that head?

My friend is completely normal inside his head.. he's got twinkly brown eyes that practically scream mischief and fun.. has a hilarious sense of humor, in fact if you hear him laughing go check up because there has to be something naughty happening.. I left him in the lounge the other day and heard him laughing his head off, went to check and he's nearly tipped out of his chair... hilarious.. he has a motorised chair that he uses his head to manouvre.. one day I had to go out and he was in my way, so I pulled him back into the hallway so we could get past.. I released the brakes to do this .. when I got home about 50 minutes later he was in exactly the same spot.. I ribbed him "Koro you having a bit of a nap"? he looked blandly at me then looked down toward the floor, then back at me.. then I clicked " I AM SO SORRY " I said to him in between yells of laughter.. I had forgotten to put the brakes back on to enable him to use his chair (brakes off puts it in neutral).. yes he forgave me and laughed..

He has taught me heaps about life.. his faith is strong, his search for truth is remarkable.. his desire to be employed is hurtful as there possibly is no way he'll be gainfully employed.. he is expected to survive on invalids benefit.. which gives him little extra to enjoy himself.. I am pleased to know this man.. when I get mad with him, I go quietly away and twist my arms up toward my chin.. hold them there a few moments and remind myself that I'm the one able to walk away at the end of the day.. that I am working in his home and I am there to support his life.. Yep he laughs at me when I continually struggle to get his pants on in the morning (it's a mission).. He laughs when I threaten him 'with the bash' because he knows I'm only joking..

My friend..

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