What does it mean to be alone? Segev sits in a medically induced haze for part of the day, not purposefully, but because he has to have such a large number of medications to control his seizures. Sometimes it looks like he is asleep but a light touch immediately brings him out with a smile. So I prefer to see it as a trance state and I am dying to know what goes on in his thoughts when he is like that. Then there are times when he is truly alone, non-responsive to any stimuli. I don't refer to the catatonic state after a massive seizure but the times or even whole days when he simply cannot find his way back to consciousness. I wish I could be there with him, to guide him as I guide him through his ill-life. But he is a stubborn tourist this Angel named Segev. He has his purpose. His purpose though is at odds with the physical form he is trapped in. His physical form simply cannot contain in a normal way the message that he brings me, and that is part of the message to me.
I have an ex, my second, my second ex-partner, partnerX from here on in, who is surrounded each and every day by dozens and dozens of people that she interacts with. Each day dozens of people whom she meets even for the first time in her business life, consulting, designing, as well as her personal life. A constant stream of people vying for her attention, that beautiful creature, and yet she feels horribly alone, left out of the life she really wants. Terribly successful, accoladed and desired yet terribly lonely.
I am surrounded by my son Shoval, daughter Noa and of course Segev. My only real other interaction with people is through my patients, loyal and to some extent, friends or even extended family but always far away, really only in my professional life, though I absolutely take my work very personally. Yet I do not feel alone. What I do feel is un-nurtured. That is the best way I can describe it. Sometimes you feel that it would be nice if someone could just take care of you a bit.
I can berate my children for not doing more, sometimes I certainly do. On the other hand I know that they are in a special situation, called upon many times to step in for me for a few moments, caring for Segev so I can make his food or shower. They don't need to be told when and how to do suction, give him his food, take air out of his stomach, hold him, press on his stomach, warm his legs in the winter. As a matter of fact my daughter has such astounding ability to feel physically when something is not right that she can rearrange Segev's posture to make him more comfortable or press on areas that relieves his pain without being asked or shown. Having that intuitive ability is the basis of the bodywork therapy I have been performing for over 20 years and so I am naturally very proud of her.
She also sees her father suffering, aches and pains, headaches and severe fatigue but I don't know if she sees me as being alone or lonely. I'd like to be able to share some of the responsibility with someone, tried to but it didn't work out. The massive success of partnerX, which naturally brings even more responsibilities was a compromise tried for a long time but eventually abandoned.
Where Segev is concerned compromise is not a good thing. When you go to the emergency room and the staff does not recognize the severity of the situation, trying to force you to conform to standard protocol and thus compromise your intention of securing safety for your child, I will not have it.
Nurses of one hospital learned the hard way after many visits that I will not compromise, that there will be no mistakes and that now means now. This means not sleeping, knowing what the heck your talking about and double checking everything that is done. After you catch someone giving the wrong medication, the wrong dosage or forgetting a dosage, attitudes will change. Perhaps my demeanor is even what exacerbates some of the lapses, bringing out doubts in people; so be it.
When you are as demanding as I am, of yourself included, there is more fatigue and there is more animosity but there is a heck of a lot less uncertainty and this has proven itself again and again.
As of today, of children born with multiple brain deficits, massive neurological malfunction, complete paraplegia and most significantly that most virulent of epilepsies, Ohtahara, that remains very poorly controlled, Segev is as far as I know only the second child to reach his teens. There probably are more somewhere but if there are then his or her parents are not part of a support group, facebook group, online forum or blog that I know of.
And so I write, in part to share, in part to gain more understanding and partly to connect to others who share similar experiences and in having done so and connected to people I find that I did feel lonely. Not on a personal level but in the sense that now I know I need not fear being unique. It's lonely at the top, they say. Something that partnerX can relate to.
I still don't look to the future, thinking, tomorrow will be better. I still don't believe in hope. Don't get me started on hope. I go by what I have learned, which is that yesterday at some point became today and that today will become tomorrow. Until it stops, in which case all the days will blend into one.
Segev is already there, I believe. He has no sense of time, his days are all one and he floats in his loneliness and his togetherness as though they were one and the same thought.