When we speak of disability, or as I prefer to call it, physical and/or cognitive compromise (PHaCC for short, as in "is he disabled?" "Yes, he's PHaCC'd"), especially, as is the case for my son, extremely disabled (ePHaCC) nothing speaks more clearly of the concept of 'outer shell' than what happened to my mother, Hansje.
To see the change of a once extremely vibrant person, who's calling in life appeared to be to spread a message of tolerance and acceptance, especially of difference, through her direct interactions in daily life with a myriad of individuals she would meet, into a completely helpless being unable to communicate, would be heartbreaking if not for her message.
This rawly intuitive message, coming directly from her heart, was often met with an awkward disdain (fortunately I was eventually able to mature enough to see it in proper context, in part due to my life with Segev), but throughout my conscious memory of my mother I saw many whom usually respected her intentions, even if they too did not understand them fully at the time.
When Hansje spoke she did so in a unique way, not merely using her hands to gesticulate for emphasis but actually miming concepts to enhance the understanding. For example, if she was talking about how something could affect our hearts she would form a shape with her two hands and pull them towards her chest. Whenever she said, "for me" or "that's just me", she would always put her outstretched palm over her heart. And with those phrases and gestures she would often not allow a discussion to escalate into an argument because she had that special quality, where she would never argue, always let someone else have the last word and never brood over it later.
She had her own opinions, well formed, which she could explain in meticulous, confusing detail; because it was always about our heart and what was going on in there. The intrinsic value of a person's feelings. An unalienable right which should be respected, that she put into practice continually with that attitude of not arguing, creating a vacuum where anger eventually cannot exist.
She loved talking to people, it was a lifeblood for her and people were often literally stunned by her honest intentions, which never bordered on the intrusive or belligerent. She was not an evangelical salesperson bent on introducing you to her view on life. She responded kindly or often took the initiative when she intuitively felt a person needed to hear a good word, a phrase of encouragement, which she never plagiarized, always coming up with her own unique phrases. This led often to a moment of partial or not understanding, but also as I said, a stunned response. Later in her life she repeatedly told me, even prior to her losing the ability to speak, 'Eric you are my voice, you say and write what I feel'.
And there you have it, this very lively honest woman, only 65 years old, searching with her being for heartfelt connection to our positive core human values, became ill with ALS. The first thing that went was her ability to speak.
But still she had it in her. The picture below, my favorite and taken by my daughter when she went to visit her grandmother, is of my mother after she could no longer speak and the disease had rapidly progressed to her legs:
|pen ever in hand, to continue her communications|
She accepted her illness with a 'whatever', in the same way that she appeared to superfluously dismiss a tragic past where her father perished when she was a year old and her mother, whom she was prevented from seeing at the end, when she was 17. In this sense she was my opposite, with her deep feelings being only fleetingly expressed in words and strange sentences, since the words themselves mattered little compared to the inner life, the true motivator.
That precarious relationship with form, already expressed at age 18 when she appeared in the documentary film 'mensen van morgen' (People of tomorrow) and responded to why she wanted to become an actress; "it's more fun to pretend", she said.
But when her own body started to crumble, as can happen in a myriad number of ways to any of us, she could not and never tried to pretend. She never ran away from it, tried to hide it. I don't honestly know if she was even a little bit scared of it. She accepted it with an unspoken bravado. She didn't try to belittle the disease in an attempt to get the upper hand psychologically because there was no need.
Her mind stayed clear until the end as she watched all of her bodily functions taken over by strangers who suddenly became her intimates but finally in a way, obtrusively, forcefully, albeit with soft spoken kindness, which was completely counter to how she had approached the intimate matters of heart and psyche of others, with a larger than life genuine understanding. Reduced never the less to an object of care, not on her terms, this invasion of her body she wailed against in letters, until I wrote to her the following words;
mom, remember that this is not being done to you, personally, this is being done to a dressing, a body that no longer functions. They can't do anything to you.
This was enough and she would later write that she was able to finally and completely accept her fate because of those correspondences. At the end what she needed most is what she gave to others freely all her life, support and simple affirmation. And with that purpose in mind I traveled at the end of December in 2011 to be with her, despite my responsibility to my son, to allow her to let go of this life whilst being awarded that same caring by someone who truly knew her, whom she completely trusted. I told her how much she means to me, how much she has helped others, that everything will be OK with those she is worried about (the last thing she ever wrote was concern over whether I could get a glass of water, seeing as I had just made a long journey to come and see her) and that I love her.
The shell had withered, horribly, but inside was still the vibrant spirit of a person who had much to share with the world. A gentle soul whose foundation was respect, who faced the annihilating force of her illness without drama, without anger.
How does that speak to our acceptance of the of inner life of others, who perhaps are unable to express themselves in ways that we can understand? In matters of the heart where form pales in importance next to the deeper and much more real force of capacity.