October 30, 2011

Finish what's on your plate

It seems to me writing about my son Segev actually makes the journey appear longer, though strangely somewhat less anxious.
There is a saying here, in this warm climate, often heard, "this is the hottest summer yet". Every year it is repeated and I always thought to myself, 'what are they on about?'
And so it has been with Segev, each year seems to be harder but I know that for a good part it is my becoming a bit older, wearing down the polished surfaces of experience nearly past the point of usefulness. Now the edges are becoming rough and the anxiety is definitely increasing proportionately. Less capable of caring for him at 46! That's a laugh. So it must be psychological.
And there is something not so funny.
Segev continues his recent regression unabated. Flaunting his delicate balance, headlong into the oblivion of those massive seizures.

I have tried to take catnaps while my daughter keeps an eye on Segev and I succeed every so often to doze off for fifteen minutes or even more but it is only just enough to keep me going while repeatedly I feel my eyelids literally closing on me in the evening.
The nights remain tense with his staccato breathing, rasping violently like an old car breaking down. Neck muscles tightening, my neck muscles as well with resultant dizziness and trouble focusing in the morning. Segev quite oblivious for the most part, catching up on his sleep throughout the morning.

It could be worse I say to myself and yes, I do believe that. Have to reign in the shakiness a little, remain focused as I have often said and always be at the ready because when you are feeling weak and tired, you've had your fill, that's exactly when -BOOM - you get clobbered. Unfortunately I can't go into the details of the clobbering that I received, but suffice it to say that it concerns some troubling matters from the past coming to a head.

Insofar as the normal issues are concerned,Yes, I know I'm trying to be lyrical about such mundane acts as sucking Segev's stomach contents out through a tube, enjoying sprays of bile and acid in my mouth as the pressure suddenly releases for the umpteenth time today. Gagging and nearly retching despite it never having bothered me before.

Stress works in mysterious ways. In the skype chat I had with my mother, after yet another such long silence because she doesn't have the energy, at the end I always blow her a kiss, after her own habit and she tried to raise her right hand to her mouth and couldn't do it, looking pleadingly at my father to take the laptop from her. I sat stunned.

Being an adult is not the fun I thought it was going to be as I wrote story after story, day in day out, an exuberant 16 year old, looking forward with inexhaustible curiosity.
Yes, I am angry, simply because I don't feel I have the physical strength to brace myself cheerfully and try to make things alright.
Clobbering by betrayal will certainly suck the wind out of your sails, in troubling ways that I didn't know existed. And the more trust you place in a person the harder it hits you.

But don't get me wrong, and I've found myself saying "it's not meant as a platitude" in several places lately, this negativity takes place parallel to but not in place of a strong healthy stream of acknowledgement of positive things.
Well, that should be clear to those that have read well previous posts.

My mother's last sentence, which she wrote in the chat, was "Segev is so lucky to have such a great father", and I told her, "I'm lucky to have such a great son". And even now, with the gut-wrenching seizure of an hour ago, his inhalation therapy running and the prospect of a troubling night ahead, looking at Segev, who has no demands, is so accepting, acts to calm me and put in perspective my frustration with the inability to change the situation.

October 20, 2011

XL stands for extra large

Segev is down for the count...6...7...8...

The simple perpetration of violence on his person, by the return of a monstrous seizure long since not seen, like the blight of a wholly sadistic god, like the snap of the marauder's whip. It comes twice in the night. It levels him.
You have been weighed and you have been measured, and you have been seen fit to be trampled upon and smothered.

This of course comes at the close of several good days where, though  in the usual way tiring indeed, I can say Segev is as stable as he can be, as healthy as he can be. No, I didn't let my guard down and yet didn't see it coming.
Just one more seizure to add to the five hundred thousand already had? I suppose. His body temperature went down so I covered him with a blanket after cleaning him  of the excess, escaped urine. He lay limp, unconscious. His heart rate dropping from the diazepam but the oxygen monitor never even once sounded an alarm .

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.