Saturday, January 20, 2018

What is it, and what does it mean?

I was asked a pair of fundamental questions:

What is your definition of disability?


What does having a disability, or being disabled, mean to you?

Very BIG questions those... with very big answers...

A disability, is some functional area that requires a "normal" or acceptable  level of effort and difficulty for the large majority of the population, and which is considered "normal" and important to living life within a society; for which some people have either a total inability to satisfactorily function in that area; or for whom doing so, is so difficult as to cause significant problems in that person's life; or for which they require special assistance to function in such a satisfactory manner.

These can be physical, emotional, or mental.

That definition should I think, adequately address the functional aspects of both questions... social and emotional aspects are FAR more difficult and complex.

So... what are my disabilities specifically?

Well... I have limited mobility due to multiple severe musculoskeltal, and neuromuscular injuries, some with degenerative aspects in my joints and connective tissue; as well as arthritis relaated, and endocrine disfunction related inflammatory issues, which are also degenerative.

The pain from these also has general, and cognitive, disabling effects.

Then, further, I have general and cognitive disabilities, caused by stage 4 metastatic lymphocytic endocrine cancer, with thyroid, pituitary, adrenal, and gonadal insufficiency and disregulation; with associated paraneoplastic syndrome (including paraneoplastic insulin resistance), and degenerative neuromuscular and connective tissue issues.

I used to have near perfect eidetic memory... now there are times I can't remember the names of good friends, or the terms common to my profession which I have PhD level education in, and which I teach others at a postgraduate level.

There are times when I can't sleep for days... my record thus far is 12 days without full sleep (I was able to partially doze for short periods but could not reach full sleep), and more than 6 days with no sleep or rest at all.

On the other hand, there are times when I am overwhelmed by fatigue and the irresistable need for sleep, which when I am overcome, results in my sleeping for anywhere from 20 minutes, to 20 hours.... but the "sleep" is not restful or restorative.

I gained 200lbs, in less than two years, while on a restricted diet... because my metabolism simply slowed down, and I retained huge amounts of excess fluid. So much that I can still easily gain or lose more than 20 pounds in a single day and as much as 68lbs in three days, and 87 pounds in 5 days.

...Because of a specific spinal injury and little over a year ago, which caused rhabdomyolisis, partial kidney failure, and muscle death... I lost approximately 30% of the muscle and nerve tissue on on the left side of my body, from midback, down to my left foot andntoes.... I have spent the last 16 months, basically bedridden...

... and and of course, I am on my  third go around with this cancer, that is doing its best to kill me...

That's just a small subsample of the issues that have developed over the last 15 years that I have been fighting my illness.

So... it's understandable why I look in the mirror and sometimes, see a stranger, who only barely resembles "me".

Socially and emotionally... For me... I'm not someone who has ever given much of a damn about what other people, or "society" think... I am internally motivated and internally validated, almost entirely.

I am also someone who, for most of my life, both physically, and intellectually, outperformed almost everyone... There was very little I couldn't do, if I was sufficiently motivated... to a level that others might consider insane in itself...

For me... emotionally... what having severe disabilities has meant.. was that my body betrayed me, and made me... not me anymore.

Flowers for Algernon...