Health

WHAT’S WRONG WITH ME?

Why can’t I move?

Having been sick for over 20 years (actually 24 years now), as you might imagine, a pretty monumental disease process has taken a heavy toll on my body. Yeah, I’ve gotta say, I’m pretty sick.  From the quadriplegia to the extensive breathing problems, at times it’s freakin crazy! Only somehow I am still surviving and somehow seem to push on through.

Yet with no conclusive diagnosis (re: my neuropathy) I’m still searching for answers. I mean my blood has tested positive for Lyme Disease, but what else do I have? Or, does Lyme really do this? Dunno.

Have I acquired one of the worst strains of the disease, while holidaying in Italy back in 2003??

There has been cases documented very similar to mine. Only to give you a very honest answer, on why I can’t move, I just don’t know… and neither do the doctors.

Testing facilities aren’t really up to speed with all this – or, at least in the past this was the case.

DISABILITY ADVOCACY

With a lead by example type approach, my aim is not exclusively directed towards a particular disability or illness, or towards community acceptance of either of these things, it is much rather about empowering the individuals.

Like you really can still do and achieve stuff no matter what your predicament. It really is all in your mindset.

I mean shit happens, we all know that, but as Marianne Williamson puts it, “as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

So just think, “ANYBODY” stepping up, it can also help others.

That’s my belief. Try it.

PERSPECTIVE

Some staff, gees they were oblivious to my situation. I mean one staff member once commented how happy I was living where I did (in an institution – a place where I am no longer, thankfully), and she was genuine, to which I abruptly replied ‘no’. I went further, ‘why would I be happy living in a place with no privacy, no choice of housemates, with countless rules, where I’m the job and I often have strangers doing intimate things to my body?’

‘How would you feel?’ I asked her. I could see the cogs turning.

But shit this disconnected thinking really made (makes) me mad. Just because ‘staff’ or some people were (are) around so much they became completely desensitised to the catastrophic nature of my predicament. Which, admittedly could be interpreted as a good thing as people weren’t primarily seeing my disability, however in other regards some people walked all over me because I was simply the disabled man trapped in the group home.

When staff finished their shift and got to go home, I never got to go home. My disability, health routines, mortal vulnerabilities; they don’t take holidays or summer vacation.

In part my humanness existed from the compassion shown by others, or without others I was nobody. In a way, because of my physical limitations they somehow extended to my emotional or intellectual breath.