Fear
Of waking up from screams
Of getting the always expecting but never wanted call
Of the results of the last exam
Of what he does and doesn’t do
Fear of day
Fear of night
Fear of pain
Fear of suffering
Fear of life
Exhausting fear, Debilitating fear, Depleting fear…
Is life fear or is fear life?
Today someone died.
That should not surprise us, right God? There are billions of people in the world, millions in my country. Millions of people die every day. Nonetheless, death is something that still bothers us. We fear death. We hate death. But why?
The other day I took some time to think about this. Why don’t we live forever? How would the world look if we never died? The first image that came to my mind is that we would all be sitting in the beach, drinking coconut water and eating fish we took from the sea. All urgent things in life would disappear, because there would always be tomorrow.
But at the same time, this would create great stagnation of the human race. Why? Because if we had infinite time to do things, we would also take infinite time to do them. That is how we are. I don’t meant there would be no inventions, but the process would be much, much slower. I can imagine the typical conversation between two inventors/entrepreneurs in this world: “Jill: Bad news Joe – the test we did today for the itch-scratchy machine failed again. Joe: Bugger. Well, we’ll try again later. No rush, it’s not like we are going to die tomorrow or something like that”.
For some strange inner reason, we all want to change the world. We have a limited number of years, days, hours… And one day, hopefully without previous notice, we die. So we can’t wait for tomorrow, because who knows what will happen tomorrow. We must do things now.
My greatest fear is not death, God. Everything ends when we die. I fear for the living, because these are the ones who suffer when we go. I fear pain. I fear suffering. I fear being lonely.
But I don’t fear death. Because death is what makes me alive.
(This post was supposed to go out last Thursday, but as usual – you can plan and plan, but you never know how things will turn out)
Today is a good day. Well, every day we are alive is a good day, isn’t it? But today is even better.
Today we were thrown out of the rehabilitation hospital. OK, we didn’t get thrown out, but my son is in a very stable state and doesn’t need the extra night-care that is given at the hospital. Since we live relatively close to the hospital (that is, one hour drive), and there are other kids that have more need for his bed, the head doctor asked us if we minded moving to daily hospitalization. After some thoughts, weighting the pros and cons, the fears and more fears, we decided to jump to the opportunity.
So my wife started packing all of the stuff we had accumulated during our 4 months of hospitalization: toys, books, soap, shampoo, body lotions, more toys, food just in case we got hungry in the middle of the night or if our son didn’t like the food in the cafeteria, detergent, more toys, coffee and tea, more toys. It ended like this:
(and this was in a hospital room with another kid in the same room)
This made me think how much we cling to all of the “stuff” that we have. It wasn’t like we didn’t go home each weekend, or had the opportunity to jump home almost each day. And the supermarket was just a block around…
We just need all of this stuff to feel secure, like we are in a comfortable place because we are surrounded by things that are ours. Stuff gives us a sense of security.
But on the other hand, it weights us down. If we want to move, we need to take all of the stuff with us. We have gotten used to it. Packing it all takes time, effort, and LOTS of space. And then it makes us slower, weighting us down. And it’s not only a physical burden, it also weights on our brains. Do we have this and that? Do we need more? What are we missing?
It takes great courage to live with less stuff. Stuff does not create certainty in life, as I know firsthand. It creates a false sense of security that can break in one second, and all you are left with is… just stuff.
So live experiences and have a good time. These are memories that last forever. Stuff just comes and goes.
P.S. my wife will surely say that I need to start practicing what I teach 🙂
An early morning four months ago our life was turned upside down and then shaken very hard. From having a relatively normal life, even if we went once a week to the hospital for chemo treatment, even if we had different exams every other week, even if we were always afraid… We still had some kind of routine.
But on that Saturday morning we had to run to the hospital, and after 6 hours in the operating room, the life of our son was on a thin line. We lived in the hospital day and night, sitting down beside his bed, praying, thinking, crying, praying some more. Asking you why, trying to understand.
And then came the first movement, opening his eyes. The moment he started communicating with us and we knew that there was someone really alive on the other side of those small eyes, behind all the tubes and machines that went beep, beep, BEEP BEEP BEEP, taking more and more of our already drained energies.
Slowly but with incredible strength, more and more tubes we taken out as his body took back control of its functions. One more operation. And then another one. And each time the worries rise again, of what will happen, of all of the things that can happen. The eternal wait outside of the operating room. Seeing him wake up again, alive, breathing, feeling, thinking, understanding.
The first steps were made and he started to regain more of his strength, and his willpower. Every day something new happened: a new movement, some blood test that was outside the “expected” range, some reaction that was “not what we expected”. And we moved on, because there is nothing else to do. When you are down in a hole, up is the the only direction you must look at. We kept on clinging to the rope that you had thrown from above, and pulled every day as hard as we could, feeling all of those who love us as an invisible platform that kept us from falling down again, and gave us strength to go up more and more.
Changes became more gradual each day. Small steps turned into full range walks, hand signs became sounds in his mouth, eye signals became words in conversations. Passive sleeping was replaces with active distraction and never-ending confusion. He was once again reading his favorite comic books, watching his favorite TV shows, building Lego… Everything is more hard than before, sometimes almost impossible. Concentrating takes a lot of energy and it lasts for a short time. Walking also makes him tired very fast. But every day is a new day, and every day is a new improvement.
And now we are back home. Not one of us, not divided. All of us together sleeping at home each day. Starting a new routine of going to rehabilitation each day and going back home at the end of the day. What a great way to celebrate the passing of these four months.
We have lived through so much that it seems like an eternity, and at the same time like it was only yesterday that we were at home, sitting at our dinner table, singing together, that Friday night before everything happened.
God… please make the next couple of months less interesting. We really need the rest.
Hi God. Here we are, again at the IC unit. And while this time it was not a complete surprise, once again you showed us how we can plan and plan and plan, but things happen when they must happen. We had a great weekend at home, and found ourselves again at the emergency unit on Saturday (but at least not so early in the morning as last time). And after a long wait (time sometimes flies, and sometimes it crawls), nothing “wrong” was found. But because things don’t “just happen”, we stayed at the hospital for some follow-up.
Interestingly, it turned out to be just for the good (as everything is, right?). It turned out that after some days in the hospital, where you can do some “experiments”, there is no need for one of the medications he receives. And not only that, but on the second day at the ward, the neurosurgeons started saying that “if we are already here, maybe we should do the operation that we planned for may? You know, to save you the going out of the hospital and coming back again?”
So yes, we humans have this tendency to plan things, and then reality (and You) comes and decides what will really happen. And it is so hard (at least for me) to change plans. And change them again. But we don’t have a choice.
And talking about planning, in the afternoon we had planned that my wife would stay the night in the IC unit and I would go early to sleep. And I was in the middle of writing this post… But just before I left we were told to move to the surgical ward because our bed was needed by a more urgent case.
Recalculating route. Once again.
Life is tough. Not only having to deal with what we have but also being always afraid of the unknown, and of the future and what it will bring us. Knowing that we don’t know a thing.
Trying to maintain a normal life with this burden you gave us, or as a good manager would say, this “challenge”. But we have more in our life, and they need our attention, our love, our caring. The world doesn’t stop because we have to take care of things. It keeps going and we must play catch every single day.
We think that life changes us, but we are a tough nut to crack. And even knowing that the most basic things in life cannot be taken for granted, the small details of life make us angry. And this makes us even angrier.
And sometimes we just want to cry.
And this is OK.
Because sometimes this is the only thing that we can do.
Vainolo's Personal Blog 