August 11, 2012

Slow train coming

I’m still trying to figure this out, but the fact that the sentence was started with a form of “I” should give an indication as to what issue is being hashed out in my tattered brain.  It’s been one and a half years since Segev’s last hospitalization. What was to be one of many-and-the-same visits to the emergency room due to his seizures physically taking over his body to the exclusion of all bodily functions except for breathing, became a nightmare in the truest sense. His life was in danger, the causes of which I have written about several times, and apparently those weeks in hospital were timed in such a way as to propel me on a journey I wasn’t willing to embark upon, that  nearly ended up crushing my spirit and from which I am still recuperating. 

Then the death of my mother was a blow which I now know will always leave me with a deficit, a mental limp if you will. This process that I have been going through as a result of those experiences and the continued daily care of my catastrophically disabled son hasn’t had the effect of decimating my Will, my resolve, but it has forced a change which, looking back, I so hoped to avoid.

Change, if you didn’t know, is a kind of compromise, where often two forces meet and neither will be the same afterwards. I don’t look at this change as being either positive or negative and I think there lies exactly the lesson I’ve come to see in it.

My blog posts have dropped to almost nothing in this one and a half year period. I began to feel, for the first time, a reluctance to share about Segev’s life. It’s not that I was becoming concerned with possible affects from outside due to exposure as it had more to do with how I saw my role as Segev’s caregiver.

I’ve been concerned for so many years with being able to convey the positive in my son’s situation. The toll over these fourteen years has been immense, but also here I have written numerous times about that issue and will spare you all my river of tears over that. Being verily embarrassed by the severity of his health issues, because knowing that it is so difficult to relate to I have thus often tried to convey an understanding of his care as something which, while catastrophic, is an enriching part of life and one that needs to be shown in both its beauty and decrepit agony.

Now, in these days, I am left with neither the catastrophic element, feeling I have assimilated its content completely into my being, nor the pathos of a life, his life mind you, that while utterly and completely worthy of living is not living in the sense that 99.9% of the people out there could consider worthy of such attention.

The change has fermented a long time and has even been difficult to recognize due to the complexity of my family’s life and the immense concentration required to deal with issues in a way that could satisfy my mind.

There lies the problem of course, my mind, and its’ needs to understand and above all to influence, to effect change through course of action. Meeting with reality has seen those actions be rather coarse in its realization if not in its intent. So many things pressing themselves upon our conscious minds and yet I have seen glimpses of something, a barely recognizable influence that brought turmoil to my dreams and finally saw the light of day as a pondering,  ‘what about your heart Eric?’

Isn’t there some kind of flowing exchange  in life that must also incorporate that necessary element in order to achieve a better balance, a more graceful existence?
I have spoken with many on the subject and have even written pieces in newsletters, blog posts and above all, poems to impress that very need of expressing what the heart needs. Besides often preaching to the choir the effect my ponderings and conversations and writings have had, it seems, is above all for my subconscious to give me a way to exonerate myself from truly being in touch with what my heart needed. So instead of flowing more, I became more rigid. And the semblance of control that I had been able to maintain, of myself and of Segev’s condition, slipped through my fingers more and more.  

Segev’s health is failing, this I have known from day one. All of the above, what I have said, will not remove or diminish one iota of my determination to put everything that I am able to give at his disposal. What is clear to every carpenter though, that without the right tools you would be a fool to attempt to build a house, requires of me to be absolutely certain my efforts are being made with the right tools in hand.

I’ve built bookcases of discarded wood from a pile of rubbish with a pocket knife. Always looking for a challenge, a way to assert ingenuity and to create. But this ramshackle, hurdy-gurdy approach to life has its limits and I do not fear to tread over the boundaries of what is possible, which has brought me to the present condition. An extreme life, yes, with extreme accomplishments, yes. And somewhere, somehow, along the way, quite devoid of heart. Some would argue that last point with me, but that is, alas, my feeling.

There was a sentence that my mother used to say each and every time we spoke, until long after she could no longer speak it and writing and typing became near to impossible but still she insisted on repeating it, each and every time. The conversations grew shorter and more rare but still she persisted with this sentence and my already exasperated response, always the same. My mother often felt frustrated in life that she could not explain exactly what she meant because she felt it and often said that I could put into words what she was thinking.
She kept saying it. I tried to understand her point of view from different angles, putting aside how I related to her as my mother and just as a good friend might tell me this. I thought I had the perfect response because I absolutely believed in it. And my response was and still remains true and honest. What I didn’t see though was the layer of meaning that was hiding there, at least for me, invisible because it was so obvious.

“But what about you, Eric?” 

Her persistence was uncharacteristic and that fact made certain I wouldn’t leave it alone, wouldn’t categorize it and store it in my mind as one of those things you just will never understand from another person.

“This is what I am and I’m fine with it” always came the response.  And I am fine with it, now and always, for all these years. That won’t change despite the wear and tear both mental and physical, despite those that wish to cast doubt on such an existence (and there are plenty of those, who either leave or don’t understand).

But that thing about heart; about feeling a connection which turns out to be no less important or less real than issues of practical care, willpower or mental acuity, has to find its proper place in order for the whole process to not just survive but to truly surpass its mundane boundaries. I know it’s a process; there is no ‘end-game’.

Still, it should come as a surprise to those that know Segev’s journey that, the other day, with all that circulates in my head and sleeplessness as a modus vivendi I had a moment with Segev, where I gave him a treatment, as I continually do, of pressing and massaging his dislocated joints and massive kyphosis and he relaxed ever so slightly into the treatment, as much as he can, and smiled a little bit in acknowledgement of the relief, and I felt my soul sighing, lightening the load ever so slightly, as though I was content. And I was.

And that’s probably not the only thing I’ll have to say about that.


  1. There are certain things I'm reading into as I ponder on your thoughts. If I am anything like you - and I feel that I am - I imagine that we have a little switch in us that we have become very proficient at turning off. That switch is definitely controlled by the heart and is one of our survival mechanisms. I have found it really necessary to become desensitized to feeling things. It is my way of coping and it has made me quite stoic in dealing with issues of the heart. If I don't have to feel then it won't hurt me. The less people we have attachments to - the less heart strings that are  being pulled also. We've got so much emotional stuff to deal with on a daily basis that we have to cull some of it. For our minds to be able to function effectively we can't be emotional wrecks. However, by making ourselves devoid of feelings we are going to diminish our sense of who we are and our personality will suffer. We will also start to crave warmth and happiness because we have chosen to ignore it. To be emotionally stable we need to let it back in - or switch that button back on - or our health will be impaired and our lives will be miserable.
    I have always believed that I derived enough happiness from caring for my disabled children. They made me laugh, feel joy, pride, contentment - what more could I want. I'm just realizing now, through the loss of my mother also, that I am experiencing loneliness and uncertainty. I, too, am aware that I need to branch out and let others into my life. I'm very tentative about doing this and it will be a slow process. I may not like it - but I've got to give it a go. Otherwise I'll suffer and my kids will suffer. The pilot light's still on, it just need reigniting. Your mum knew very well what was going on.

  2. I found this post interesting despite feeling very different from you, Eric -- and I'm hard put to really reply in any coherent way. One of the things that came to mind, though, when I read and reread your words was how like you are to the eternal "mother." I hesitate to separate the two -- male and female -- but I wonder if there isn't a bit of the mother in you -- the kind of "where does Segev leave off and I begin?" question that many thinking women feel even when their children are not disabled. The fact that you are grappling, too, with the loss of your own mother who, I am certain, had an identity both separate and completely entwined with yours is also profound. I'm not sure if this makes sense, and like I said, it's just one of the thoughts that popped into my head as I read your complex post.

  3. Your mother's question is the eternal concern of every mother, "and what about you, son?" I can so very clearly resonate with the words of Marcelle. Our joys and our resilience come from some amazing simple tasks, but so very complex to the outside world. We care for our kids and their needs every moment of the day.
    There is no time for the opinion or the advice of the ill-informed. There is no time for feeling sad for ourselves. There is no time for the luxury of play and party. There is some time for the numbing effect of a bit of drink or medication, just to make it through the day.
    For me, I can allow no negative energy into my life, be it friend, relative or bureaucrat. I blog as a symbolic purge of vomit; in a more spiritual moment we light white candle or smudge the house with sage and sweetgrass to remove the evil spirits.
    We have wounds which never heal, at least not in this life. We drawn inspiration and energy from those among us who are doing similar work, and when we drawn this energy it does not deplete the other but enhances them. We keep walking and it matters if no one cares because we are sustaining life and nothing is more important....but, few acknowledge or appreciate it. We need to accept that our wounds never heal ... we just use much salve, bandages and a few words.
    My thoughts and energies are with you guys as you enter a tough next week...I feel it will be OK.