July 05, 2012

It's all in the wrist

warning: foul language is present.

I'm hesitant to place some kind of update about Segev here because of the nature of the rest of the piece. Those that really want to know about Segev seriously need to click on the facebook page link. Now for the rest.

Let me tell you what nine plus years of sleep deprivation does to you: it fucks with your mind. For starters you use the word “fuck” in inappropriate places. Your thinking becomes crimped, even confused. You cannot concentrate well and you come to conclusions much more rapidly, bypassing normal mechanisms that allow you to discern subtleties of thought, conversation, behavior.  You lose all nuances in other words.  You begin to slur words and chunks of memory are missing.

You snap at people who are close by and your anger is always just underneath the surface. This isn’t anger that comes from, ‘oh woe is me’. This is not anger because your life turned out in a way you wouldn’t dream possible, wouldn’t wish on anyone. There is no anger about a life as a dedicated caregiver, it is simply a physiological matter stemming from the lack of proper sleep. As when some people who are sick, even dying, are angry; they use it to bolster themselves as a defense mechanism. Anger activates adrenaline and testosterone, in short it’s a power drug and can be quite useful to bulrush through hardship.

The problem is of course when the hardship lasts a very, very long time since you deplete not only your body's stores but eventually its ability to recuperate. 

Sleep deprivation is a significant factor in altering your mental status and of course your physical wellbeing.  What is improper sleep? For me it means on a good night I only get up once per hour to attend to my son’s needs. On a bad night, every twenty minutes but usually with a tail-end sleep marathon of 90 minutes somewhere around dawn. If he can be settled, with proper breathing, by four or five in the morning, the reward is that 90 minutes of rest.

Subset, sub culture: Special needs, severely disabled, complex disabled, extremely disabled, absolutely disabled. These could mark five steps of descent into hell by those that live in this cultural subset as parents and caregivers of such children. I’ve come to the conclusion that our group is a sub-culture that needs, with historical precedent to look after itself in a grass-roots kind of way. No one is coming to save us. Yes, many advocates are out there, for example the fantastic Ellen, who sets a great tone for speaking out and involving people on many issues related to disability, or the “Kidz” page with always useful tips, kind and positive thoughts.

But I have become, in my mind at least, a kind of anti-advocate. This is not 'against' what others are doing; quite the opposite. Even when disagreeing with others I will support their efforts out of solidarity, putting aside my own personal interests. Because that is the crux of the problem right there. Just as whatever I put forth here is simply my own opinion, my life taking care of my extremely physically and mentally compromised and medically fragile son which is an experience that few others share, the very nature of providing care in such a situation does what any specialization in a rare and complex field must do; it isolates you. 

While it is also true that many believe they are alone, facing hardships with their kids, many have found through electronic medium that there are others toiling with similar issues. But even of those that have an outlet which is somewhat comforting, or ones who follow silently in the footsteps of others,listening, waiting, the gelling of a community grass roots kind of organization in the world of extreme parenting is complex and distant.

When I look at my experiences, particular to my child and the country, times and culture I live in, there are unique obstacles, many of which I’ve had to reconcile with as being inevitable and some insurmountable. Many of these have to do with the limitations of human biology in correcting ill-health and some with the unwillingness of many to look beyond their limited experience, far enough that they become what I term, ‘seekers of knowledge’.
Still, as I look inside I see a battle scarred veteran who has aches and pains, both physically and mentally, that no longer allow him to function as he once did, relate as he once did, forcing him to be more conservative, relegated, like the system he is so often fighting against.

I see friends who have become ‘institutionalized’ by their positions as caregivers, with spouses no longer even aware of the habitual role one person carries, as though the weight of care simply lightens and slips away with the years. People who are desperate for change but afraid that they can no longer muster the strength and resolve to see the changes through, which could give them back a bit of their own, inner identity. They may be right to have such a fear. There are others who, as I wrote about a few posts previous, have found a foothold on a path that is exactly what the caregiver/parent should be aiming towards; semi-autonomy for both the child and the adult.

With saying, ‘anti-advocacy’ I am merely pointing towards the feeling of institutionalization when the caregiver no longer has the ability to meet their basic needs for expression, companionship, a little bit of private space. Accompanied by sleep deprivation, ageing or health problems the mind will find a way to compensate. It might be as innocent as daydreams or as destructive as addiction. I’m worried about these things, for others that I know as well as myself.  I see what it is doing to me. The harder I’ve tried to fulfill my role, the more resistance I’ve met. You have to walk a very thin line with everyone. With the physicians, para-medicals, your own children. When you are in an extreme situation, isn’t it natural though that you behave in an extreme way? Perhaps, but accepted, no. On the other hand sometimes you just need someone to set you straight, give you a little warning or firm direction.

I’m an ‘oi’ person. Not so much as when used in the sense of “Oi! Look out!”. Here ‘Oi” stands for "overly intense". I made that up but it suits me as a moniker. Strangely I look to other people involved in my son's care as though they should match the intensity of not only physical care but also the active pursuit of understanding and creating methods of care. This is quite ridiculous and has caused me a great deal of hardship, i.e. two failed realtionships. “I am my own worst enemy” never found a better home. 
Each person and organization brings particular abilities to the table. Each family member has a role that is unique and this ubiquitous approach of mine is exactly what has worn me down so much. I’ve spread myself thin for so long that only the stale dry bread is left. Not a tasty meal, not much nutrition to offer.

But who sees this and understands? Who understands your needs in a comprehensive way? It’s obvious the only way to shoulder the burden is to do it with many hands. Help from friends and family, institutions, organizations, local council and the board of education and so on. Funny that the first few are often unable to help, perhaps from lack of understanding what to do. Perhaps from a lack of understanding that your anger doesn't come from being bitter at the world but from physical hardship. Organizations and well-wishers alike are all full of good heart but the delicate and complex needs of my child, which has created a whole world of routines and also superstitions, in the placement of my family's life, has a dynamic uniquely its own. 
This leads me to conclude that the degree of burden I must shoulder is directly connected to my perception of my son’s needs. There can be no absolute right or wrong here, the ability to read nuances must be restored. If you don’t find your way back to that way of thinking and additionally cannot maintain a normal amount of sleep, I fear madness will result.


  1. Well, this resonates with me way the fuck too much!

  2. As "A" said, this resonates with me all the fuck too much also! Our adrenals are literally shot and I can understand the anger which hovers below the surface, like a great white shark ready to attack. Sometimes there is nothing left and those who could share the burden quickly distance themselves...seems alike abandonment by all, even god. A relative who drops by with an insect laden basket of fruit once a year just does not cut it.
    I really have no answers and words of encouragement pale at the enormity of the task we face. For myself, at least I can get a sleep at night and there are two of us caring for my Adam. The burden is shared and I now that I could not do it alone. I do not comprehend how you maintain the energy alone. Yes, the soul-weary mind does take us to many strange places...places which we not dare write about. I would guess if I were religious, I would say that this is a "dark night of the soul." No answers, but I guess we keep rolling the rock up the hill...because it is necessary. Warmest regards...

  3. I went to the grocery store yesterday by myself, while my daughter slept and a kind and trustworthy person who helps me with errands and housekeeping two hours a week was here. It's the first time in many, many months that I'd driven anywhere by myself (I'm a single mother and have been without help with my daughter's care for the past decade, having found that the nanny population I used to draw on is no longer a viable source now that she's heavier and older) and it was abysmally stunning to encounter a sort of ghost of who I am when all my cells aren't resonating with my daughter's needs. "I can't go on, I'll go on." (The Unnameable, Samuel Beckett)

  4. "A" you have always sounded as a person who has too much experience in these things, shared experiences. Such a small subset in society where anyone who has a strong voice has such only if they are not taking care of their child full time. So, no voice except places like here and perhaps a few others on the right side of this blog.
    Phil, more like the 'voice crying in the wilderness', which cries only for itself. The irony of it is that I believe we each make the journey we are supposed to, because we must.

  5. I think that though I've been at it longer than you, I have it easier, e.g the hours spent today in silence --- except for the sounds of bird calls and deer walking --- drinking a cold pitcher of sweet chai and reading about mountain climbing. But yes, this was in lieu of sleep, which many of us need, quality sleep, the kind with REM patterns properly cycling through, the restorative kind from which one wakes into a little while of peace.

  6. I think we need to balance our states of mind in order to function effectively. We need to be always intuned to our child's needs and be ready to act. However, we must take a bit of time to nurture ourselves so that we can provide effectively. I have no doubt that you provide Segev with the care that no one else could and you have done this for years because you've been physically and mentally strong. You have made reference to how you have noticed changes in your own well being. The intensity of your life has been so extreme. You have had to do it all alone. I know it's not a choice factor. You haven't had any alternatives. I just think it's sad that you don't get a break and you don't get to have some 'chill out' time. It's pretty f#\*ed!