Pour les francophones, la traduction de ce post faite avec l'aide de Yaron Shavit, le père de Nadav, se trouve là : L'héritage de Nadav.
Today's the second anniversary of Nadav's death, on 15th July, 2010. Quite a good time to stop for a few minutes, and reflect on the memories he ultimately left to me, beyond his absence.
Every time I'm thinking about Nadav, what I recall through the days spent with him is the elusive feeling that something important had happened during these months, that he had passed on to me, in complete unawareness. You never know exactly how you impress others around you, right ? What you truly give them by your simple presence. Well, the people around you don't know either, unless they consciously try to delineate the space you've taken in their life, and what it generated in themselves. That was exactly what I did when I tried to put my finger on this. I had to dig up a bit in my memories, to get the obvious out of the way, and focus on the deeper, stronger lines that ran through the relationship I had with Nadav and his family.
The first and main shock he caused me was due neither to his disabilities, nor to the difficulty of his everyday life. It came from a behaviour I had never seen or experienced with anyone else but me : the frustration blast.
When you're disabled and trying to have a life as normal as possible among people without disabilities, you're confronted to a lot of issues, and have to make a lot of extra effort to overcome them. It is quite demanding, and regularly frustrating as you realize you have to work your ass off every day only to barely manage what others do in a breeze, without even thinking about it, and, thus, don't always realize how hard it can be for you. So you struggle to make efforts which, in the end, won't even be recognized by most for their true worth, only being taken for granted. And you have to make these efforts in almost everything you do, every day. Infuriating, isn't it ?
Being both deaf, we shared that load of extra effort to make in every attempt to communicate with others. In Nadav's case, it also included every spatial move. Thus, extra frustration. And regularly, in the end of the day, when he'd grow tired and moody, or had simply had a bad day at school or at physical therapy, he'd suddenly break in a fit of anger out of the blue, just to get rid of all the frustration he'd stored up and swallowed all day long.
The first time it happened, I didn't get scared, as he must have thought. I was totally gobsmacked. Seeing him lose it as completely and suddenly as I used to lose it when I was a kid, just brought me back years ago in a heartbeat, and instantly bonded me to him. Precisely because I knew how that felt – to have this pure wave of anger, rising from your deepest core, come and sweep you away with its fury, almost like an evil genius possessing you so violently that you just cannot control it neither resist it.
And, because I knew how you feel in these moments, I never yelled at him when it happened. I would only stay where I was, waiting for him to be done, and calm down. As long as needed, I'd stay quiet. And when he'd be done, he'd stop, fall silent, look around him, see the mess he had done, and start to feel vaguely ashamed, but ready to lose it again if you'd try to make him say sorry. I'd simply look at him, quietly, to show I wasn't going to snap at him or anything. A moment later, a bit reassured, he'd be ready to talk again, and I'd say "Are you okay now ? Yeah ? Then we could just tidy up, and have another go at this if you want." He'd answer grudgingly, but calmly, we'd negotiate as always, a little more here, a little less there; we'd try again, he'd start to loosen up, and we'd manage it in the end.
The big difference here between Nadav and me, was the support he had from his family, which shortened and calmed down his fits way more quickly than mine. Because his parents and his older brother dealt with them in a way my family never did: even more calmly and gently than me, always managing to listen to him beyond the outburst, and give him the attention he needed.
This literally tore to pieces one of the biggest statements my parents had imposed on me, which had been passed on to my brother and sister, and even my teachers for years : that I had a bad temper, and extrapolated my deafness to get unearned special attention.
Nadav and his family were living proof that my parents were wrong. That I had no "temper problem". That the real problem was the lack of communication and support in my family. I was simply a frustrated kid, so frustrated by my disability, my all-day long efforts for almost nothing and my loneliness in a mainstream school – while Nadav was in a specialized school – that I'd end up exactly in the same way than Nadav at the end of the day. Yelling at people, throwing everything on the floor, crashing books and pencils on the table, to get rid of the frustration for good. But I only got punished for that, instead of being calmed down and helped, which fuelled my anger for years to come.
I could have been SO jealous of him for that – for having parents and a brother who simply understood. Who did not make him feel guilty or ashamed of himself. Who tried to smooth things out for him without overprotecting him, to give him true authority and discipline without being too strict or unforgiving, because they agreed to compromise fairly. And above all, who listened to him enough to hear it was frustration that took over him, not a simple tantrum, and that he really needed the extra attention they gave him.
The hurt, broken kid still inside me was crying out loud for this comprehension, this empathy I never had in my family. But I never grew resentful, because the adult I was now understood too well the need Nadav had of parents like that, of their care. And their need to look after him. Because they cared; because he was their kid; simple as that.
And I was thankful to see that, because I suddenly understood how simple it can be to truly communicate with your kid or for a kid to rely on his parents. Because the broken kid inside me could find peace in this sight. It helped me to let go of the huge guilt I still felt for having been such an angry and indomitable kid for years; to understand my parents' mistakes and finally let them go.
Above all, it helped me to slowly conceive how you could become a parent yourself. How I could become a parent, one day.
Truth be told, I never thought about having kids; on the contrary, I was persuaded I'd never have any, because I'd never be strong enough to have somebody else's life depending on me. Deep down and more than anything else, I also feared and loathed the possibility to become as strict and unforgiving a parent as mine were. I didn't want to have kids only to push them away from me; but I didn't know how to avoid my parents' mistakes, either. I didn't know how to be a parent, and wasn't even able to be an adult. So I wouldn't have any kids, period.
Yep, I had been a scout leader for three years now; I had supervised kids, talked with their parents, gone to summer camps and so on; but they were not MY kids. I always gave them back to the parents at the end of the day (or the week); I didn't have to put up with them for a long time; put them in school, look after them when they were sick and everything. I wasn't in charge of their whole life. And I didn't feel I could ever do that.
But now, having full responsibility of Nadav twice a week for a whole afternoon, wheeling him everywhere he needed to go, carrying him to and from his wheelchair, doing homework and cooking with him, trying to handle a lot of things in the same instant for hours, and managing it all in the end, made me realize I was actually responsible. Hey – Nadav never fell from his wheelchair while taking the bus, going downhill to the library, or uphill back home with a TON of books, with me, despite all the potholes, posts, gaps or kerbs : that is at least good proof a kid can survive with me !
More important, it made me realize I was able to communicate with kids whatever the situation, without losing it myself or forget their needs. As I said, I never lost it at him, whatever happened. I never forced myself on him, either (or at least I tried); I'd always explain him why he could do that and not that, should he ask or protest, and nine times out of ten, he'd accept it and respect it; if not, we'd discuss and compromise, miles away from my parents' demands.
As this relationship we had built didn't deteriorate despite the bumps along the way, over time, I realized it was the same with almost any kid I was babysitting or supervising. That I managed to deal with kids calmly, and even liked it.
Believe me, I'm the first surprised of that. But Nadav was honest; not in the sense he'd never try to lie, but in the sense he'd never be able to fool you no matter how hard he tried :D. He was always honest when you'd have a talk with him, accepted to negotiate, and that greatly helped you to see the way out of any problems with him, and by extension, with any kid.
More than honest, he was also blunt in the fact he'd never try to hide his disabilities, not even tone them down for your sake, especially his deafness. Rather, he would make you see it in full view – don't get me wrong, he didn't take advantage of it. But he wanted to be sure you'd take it into account while trying to reach out to him. That you'd accept him as he truly was, nothing less, nothing more.
Because of that, he always made people react, in a way or another. Either they would avoid him, play dead, or they would accept the challenge to confront their prejudices and habits through him. For somebody who wouldn't question himself and life, he was a nightmare. But if you wanted to learn, to push back your limits and open yourself a little bit more to life, he was a golden ticket for Mr Wonka's chocolate factory.
I was thankful for that too; because he challenged me to confront my own disability instead of trying to hide it under shyness and exhausting efforts. My deafness was still a locked cupboard in the end of a dark corridor, whose door I had been told to never unlock, and he dared me to fling it open. Not to throw it in the world's face, but to simply admit it as a part of myself I had no reason to be ashamed of. That was quite liberating for me, but also for my future; because I realized another hidden reason for me not wanting kids was I didn't want to pass on my disability to them, as I thought about it only as a failure, a defect. Not as a simple part of you, neither good nor bad, that makes you what you are.
Today, thanks to Nadav, I am slowly ripening to parenthood. What I thought myself unable to be, too broken to genuinely wish, I'm now looking forward to it. And I know that in a way, a dim and intangible, half-guessed way, the parent I'll be and my kids themselves will be Nadav's legacy. That his memory will wander around them when I'll look at them, and remember how I used to look after him, and how it quietly planted in me the seed of my own family.
And one day, when they'll be old enough, and experience disappointment, grief or helplessness, I'll sit with my children and tell them the story of a kid who was in a wheelchair and a kung-fu champion. A kid who missed two school years but was still top of his class. Tell them this kid gave them birth in my mind, when they were only unreachable concepts, when I feared and refused the idea of ever being a parent.
And finally, I'll tell them to not lose heart, even if their aim seem out of reach, because Nadav's life is golden proof you can make the impossible possible. That you can achieve anything, get out of anything, no matter how far you are from it, or how deep you are in it. As long as you try hard and long enough.
In memoriam Nadav Shavit