October 13, 2011

Gunning the emotions engine

People with blogs, especially those associated with some form of physical and mental compromise (PMC), often point out that in society, disability is seen as something terribly negative and horribly adjusted, or compensated, for. I've made the statement that part of the problem of advocacy is the lack of homogeneous needs to spearhead social controversy. Also, different areas of compensation are at different stages of development due to both the dynamic nature of disability in society (think 'neurodiversity' for example) as well as prevalence (think cerebral palsy).

Part of the problem lies with basic psychology that looks upon the compensation for disability as being an intractable assertion of 'special' status which translates in many minds as, having needs above that of the norm and thus more than the norm. Make no mistake, homogeniity is what has built industry, society. Exceptions are to be crushed under the giant wheels of progress etc. Fitting that over at Bad Cripple Marx is brought up where the worker's struggle is seen to have its parallels with advocacy for disability.

One trump card, poorly played by the advocacy people, is that fact that anyone can become physically or mentally compromised at any time. Through stroke or accident. I've treated a number of severe stroke patients and watching the turmoil of trying to communicate, through a body that will no longer listen, is angering. One minute healthy and then BAM!

Amazingly complex, our society is bound to produce more and more "mistakes", be it physically or mentally, more and more accidents, despite that we try to reduce those. War makes its devilish contribution as well.

When I was 17 my best friend was involved in a motorcycle accident. He was pronounced brain dead, physically his brain was so heavily traumatized that the neurologists could not see any higher level function being retained, but he woke from coma after many months and though unable to walk normally, talk normally, read or write, with profound changes in personality and memory, he lives until today, has raised a family and is practicing in his father's profession as dentist. 

What kept him alive is his parents' relentless devotion. This in term stemmed in no small measure from the knowledge that their son had an immense desire for life. Both before and after the accident. Of course being young you have bountiful life force, desires, passions, hormones. But he had something extra, a strong personality, charisma, but he was in all a very gentle person and the amount of love in the family was always clear to me as a regular presence in their home.  And think about it, after the accident, as he made the long, long painful road to recovery, knowing how badly he was injured. Losing many functions both physically and mentally, confused at times, he went through severe depression, the foundations of which, his catastrophic disabilities, were rock solid. 
Despite the ability to do so he never attempted suicide. He wanted to live.

My Segev is the same. He had many opportunities to go, to say, that's enough now, Dad. And I, at my most exposed moments in life, baring all, emptying myself of all ego, had to say, "if you want to go, so go". But he didn't. And he was able to bounce back and continue smiling, plodding along until the next crises.  
My not giving up on him, my devotion, on a daily basis, the little things, the devil is in the details attitude helped build a base for him to rest upon in those life and death moments.
I look at it this way: death comes to us all, but we are here now for a reason. For me that reason is non nobis solum nati sumus. To me this means a conviction to carry on caring and connecting out of respect, a goal that every day challenges me anew.

My mother lies in a hospice setting in Holland quickly progressing through the stages of ALS. 
A woman with tremendous life force, singularly positive in her outlook, standing up for her beliefs, acting against injustice (at the most inopportune moments) and above all a great communicator. She lies for the most part silent and in pain. The first thing that went was her speech. How ironic. Yet for all her verbosity she always spoke at a civil level, never in need of raising her voice to try and make a point. Always excepting, out of respect, the others' sense of self. Always on the lookout for social injustice. 
But now, having become ill after such a vibrant and heartfelt run at life, she lies suffering in pain most of the day with only small moments of respite or brief fleeting apparitions of happiness. I cannot say how much this pains me. But I will take her example of how she has been living up to her illness as a strong condemnation of negativity, as though I needed such a thing.  

Chances are we will be in or know someone in a position similar to those described above.  Instead of being afraid though, instead of helping to make outcasts, well....outcasts,we should realize that while for some the idea of having a choice, to participate or not, to be included or not, may be the most important thing, the really important thing is that a society functions best when it protects its members because otherwise we are, to put it bluntly, allowing our own primitive nature as human beings to cull the 'weak'.  If we can't actively work towards the future, because despite our "life is short" commando cries, the future will come, then one day we will find ourselves in a terrible position of making yes or no decisions and wondering how we got there. The future we need to be working toward is one  where life as a disabled person is fraught with less anguish for   everyone and where 'dying with dignity' doesn't mean choosing when and how to die but rather living within  respect.

Like my friend who suffered the tragic brain damage due to an accident, my mother is coming to a place where she is running out of options. When you feel like you have no choice though, you may come to a situation where 'yes' or 'no' are all that is left. I can only hope that each and every time the answer will be yes.


  1. A very moving post and one that resonates deep with me. If only your voice could be heard by more. You have been blessed to have had some great people in your life. They have given you great strength. I'm sure you will inspire people to do the same.

  2. An amazing, accurate post which also resonates deeply within me. Life and death is a very undefined and tenuous boundary; a choice made individually at profoundly deep level. It is a choice often based upon a love-attachment. Disabled can thrive and flourish based upon a love-attachment...it is only when that love-attachment is a burden does one choose to pass over.
    We choose, our kids choose...thankfully both choose on the side of life. If only we can continue to maintain that strength which is needed and required of us. Few understand, fewer choose the options of life...for us, it is good!

  3. Your mother sounds like she is a remarkable person. May you continue to channel all the strength you need to on this stage of the journey with her. I certainly hope that somehow her pain will diminish. And yours too.