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Terror, life and death
Dear friends
As I alluded briefly at MoA this week, I have been absent for family problems. I was hoping to come back quickly with good news, but it is not yet to be.
Less than three weeks ago, my four-year-old son was diagnosed with a brain tumor.
I imagine your intake of breath, your shock, maybe feelings of empathy or pity. Well, it is much more than that when it is your beautiful, lively, loving, smiling - and innocent - kid. That bit of information -"brain tumor" - which sounds so deadly - never leaves you again, you start living like a zombie, a permenent knot in your guts and a cloud on your mind, imagining the worst, full of pain if you think about it, full of guilt if you think about something else, daily tasks becoming unreal and unimportant (and yet, with two other young daughters, we have to go on and keep life as normal as possible). We got the news right in the middle of the Beslan hostage situation, and it made it all even more vivid. Now I really know what "terror" means.
He went through surgery last week, an attempt to cut out the tumor. The operation - 7 hours - went well, and he has recovered amazingly quickly, coming home barely 4 days later. The surgeon said optimistic words about full recovery. He is partly paralysed now, but this is expected to subside in the coming weeks, and he is already doing some reeducation for that.
However, a piece of the tumor was left, because it would have caused too much damage to take it out. We were hoping to learn that it was benign, but have just been told that it is partly malignant, and we are back into an uncertain future, with more exams and more treatment(s) likely in the near future.
Google provides a lot of information, of course, a lot of it not precise enough for our needs. The best I can come up with is a 80-90% survival rate after 20 years. That does not sound so bad, but 10% in 10 years is a hell of a lot more than the chance of being hit by terrorists in the same period. Why are we worrying about them again? and putting the world upside down, and killing and maiming thousands (with a 100% certainty, these)? Why do people forget what is important?
The support of people around us (family, friends, school authorities and parents) has been amazing and really helpful - mostly by uplifting our spirits and simply being present. I hope that you guys, whom I don't know but feel close to in many ways, will be around as well. Please tell me: how do you enjoy your life today?
Posted by Jérôme à Paris on September 17, 2004 at 04:09 PM | Permalink
Comments
Jérôme, I am sorry for your son and the family. A big hig for him and some good meditated vibes.
Today I was in the park with a friends eight year old daughter and a radio controlled, heavily tuned, red model racer. She was amazing, started driving slow and very contolled and only after long self induced training increased the speed and showed off to some macho behaving german/kurdish boy gang. Sharifa even chased them aaround with the car.
So many kids in this world - all will die one day or another - and all are so inspiring in every small moment one connects with them.
Posted by: b | Sep 17, 2004 4:55:17 PM
... big hug ...
Posted by: b | Sep 17, 2004 4:56:36 PM
jérôme
i am thinking of you & yr family this night
i too feel a proximity indeed an intimité with the other posters though we are connected only by words & wires
in the same week as the beslen crisis i found out that i had diabetes type 1 & up to this point i have never been limited by my health & i have lived a tough life
with the announcement of the diagnosis - all went in turmoil - materially & metaphysically - you are brought back to yourself
as you are broguht back to yourself & your family & that intimité which has to be fought for also
the suddeness of events both in our intimate lives & that of the world hurtles at a shocking pace - a relentless surge it feels sometimes but what we are doing here & at moa & in our lives i hope brings us back to be better as people as activists as communicators
you have given a great deal here over the last six months - you have given of yourself & when things happen like the sickness of your child - the whole damn circus seems very cruel, needlessly cruel
as you know jérôme, i do not believe in god or gods but as an old althusserian i believe in people & i believe in their absolute & magnificent mystery that is based in their materiality
& i believe from that materiality comes miracles - & i think if you concentrate the efforts of your heart as i know you must - there will be hope for your child & his & your futures
your gift of giving here - is i imagined lived in your life & that will go to your family & that will create the miracles
on hearing the news of my diagnosis - which is evidently rare in a person of my age & habitudes - i felt defeated - constrained - as if in a certain sense - the life before the diagnosis had no limit & that since the diagnosis - the insulin injections themselves constituted a limit, a constraint
as in your moment with your child - in the middle of the worlds crisis - you feel so angry, so dark & you turn against yourself - at least that's what i felt - but that is a useless & sordid path & one must walk quickly away from that path
& one way of walking away from that path is our 'devoir' to others whether it is our family our our community
no it does not make us feel immediately better & no it does not change the material conditions in the first instance - but change it does & often, most often for the better
because we are capable of transformations, incredible transformations
i know that is true of you
& your family
toute ma force et tendresse jérôme
still steel
Posted by: remembereringgiap | Sep 17, 2004 4:57:31 PM
I wish you and yours the very best my friend.
Be with you family and your boy as much as you can.
The world will survive without you thinking about it. I'd be willing to bet on it.
Families, friends, but mostly children are precious--that's what I've learned in life.
Nobody has answers for "terror" like this.
I wish you and yours the best.
Please keep us advised.
The Best,
Posted by: Bob | Sep 17, 2004 5:32:13 PM
Jérôme,
though I haven´t been commenting a lot I have read your texts with much appreciation and I feel sad about your son. I hope that this closeness over the Internet - as it evolves more contacts over the world and less geographically dependent connections - will in time make war and other suffering a lot less impersonal and thus helping in the prevention of wars and other horrors mankind afflicts upon itself. I remember as a thirteen-year-old reading a letter from one of my favourite cartoonmakers at the time - Bane Kerac - to the editor of the magazine where Kerac apologized that he wouldn´t be able to keep deadlines because of the Bosnian war. He was writing from Sarajevo. I then went to a webpage "Open Sarajevo" or something like that and found I couldn´t write a word. I was stunned by the fact that those writing was in that war on television. It seriously changed my outlock on that war.
Best wishes for you and your son
Posted by: A swedish kind of death | Sep 17, 2004 5:42:08 PM
Jérôme,
My heart holds you, your family, your son.
You asked how I enjoy my life today... yesterday my husband was on his motorcycle on an LA freeway, avoiding a piece of wood on the road. He didn't quite miss it. It hit him on his foot, and the event could have been catastrophic, but it only ended with him with a very bruised and swollen foot, unable to walk much. Nothing broken, and he did not have to put the bike down. I keep thinking, as I think almost everyday he's on the motorcycle, ... (and he's a most excellent cyclist) that he was very lucky, and that I'm very lucky he did not have something worse happen.
I have two healthy grown children that I love with my life. The universe let them grow up without any serious medical problems. I very much enjoy still breathing in and out because they exist, and because my husband exists, and because we still have such excellent, nearly mediterranean days here in S. California. My sister lost her son to a automobile accident six years ago (he was 12 years old). She and I talk about how every day we wake up is a "bonus day". I try not to take any moment for granted, and must slap myself upside the head when I get too wrapped up in things that are not important.
Breathing is. (tip o' the hat to Robert Heinlein)
Posted by: Kate_Storm | Sep 17, 2004 6:15:05 PM
The posts go on, the war goes on, the world goes on and we all keep on trying to keep going on. As a parent who’s whole life at 63 revolves around seeing my progeny making it and procreating and continuing keeping on, my heart bleeds from your wound.
I have loved your communications and friendship albeit cyber. My thoughts and heart are with you and yours. May grace lighten your load.
For what it is worth I will share some of your heartbreak and worry.
(Double post from over @ MoA. please forgive.)
Posted by: Juannie | Sep 17, 2004 6:17:35 PM
That's heavy Jérôme.
I wish I could tell you I did something stunningly creative today, something that demonstrates the spirit of carpe diem...
But alas,
My most precious moment was reading your post and reminding myself that the best a man can do... is to always smile at children.
And so...
I have a smile in my thoughts for yours.
Posted by: koreyel | Sep 17, 2004 6:26:37 PM
jerome,
that you can even have thought about others suffering at this time gives me hope for our
world.i'm sure those of us that pray will,and
those who do not will keep you and yours in our
thoughts.if there is any support you need that
we may able to help with, let us know.as someone
who has had 2 brain surg. with another comming
up in feb. i can say that doctors can and do
amazing things these days.my friend is a 10 yr.
survivor of brain cancer/tumor it was tough but
doctors were able to stop what was left of her
tumor from spreading and eventually killed it.i
am also waiting for a new procedure to arrive by
feb.i couldn't imagine what it would be like if
i was waiting for that help for my child.be strong
Posted by: onzaga | Sep 17, 2004 6:52:15 PM
@Onzaga:
Wish you and yours the very best also.
In the last ten-fifteen years there have been many medical breakthroughs in this area.
I pray for everyone here and in the world who does not have reasonably good health tonight.
You all are in my thoughts and prayers.
Posted by: Bob | Sep 17, 2004 7:35:52 PM
Jerome: I too wish to simply add my sincere best wishes for your son, for you, and for all of your family.
How did I enjoy my day today? It was crammed with four very intense budget meetings, made more intense and agonizing for me because I already know that the organizations I'm meeting with are not going to get the funds they need, even though they have done a good job justifying their proposals and all of them are meritorious. After the last of the meetings, a more satisfying informal meeting at a nearby coffee shop with a wonderful former staff member who is in town today to catch up a bit and hear that things are going well with her. A final meeting at the workday's end to meet with my wonderful staff, commend them for their fantastic work this week (and always), celebrate one birthday in the group, and attempt to prepare for the next week a little bit. I left knowing that every one of them would be working over the weekend too, at various times, to get everything done that our office needs to get done. I treasure those folks.
Came home so happy to have made it through another work week, even with some work still left to do tomorrow, and sort of collapse on a Friday night. Went to MoA and then here, read your sobering news, and suddenly could step back about three dimensions from me and my little world and realize all over again how important it is to see and treasure and love those around us, and not waste it, not a single day. Not to be caught up in the frantic pace and tyranny of the never-ending work cycle to the point of not seeing the people in our lives anymore.
All my hopes and best wishes are with you and your family.
Posted by: maxcrat | Sep 17, 2004 7:40:49 PM
Jerome, I am so terribly sorry. I know the fear that you describe, and the great energy and determination it takes to meet life's small, everyday demands in such circumstances.
We are always much stronger than we know, our souls made of sterner, finer stuff than ordinary, unexceptional life gives us occasion to realize. And ordinary, unexceptional life - never without worry, never without its challenges - I am confident will return for all of you. But not without you knowing, always, just how extraordinary, how exceptional, how radiant it really, really is.
Keep us posted. Let us know how it's going, what you're thinking. That's what bars are for, you know.
Posted by: Pat | Sep 17, 2004 7:51:28 PM
Jerome,
My heart goes out to you and your family.
My brother in law, who is my best friend, had a brain tumor six years ago. He has recovered and the prognosis is very good over the long run. His was malignant or just starting the cancerous stage. He had a doctor who was one of the surgical team for JFK.
Jerome, you are one of my favorite intellectuals of all the intellectuals on these message boards. You are always well informed and make great arguements and with that, I can only extrapolate that you are an excellent decision maker. I am sure in this instance with your child you are going in the right direction. My thoughts of healing are with you and your family. May peace be with you.
Posted by: jdp | Sep 17, 2004 8:01:05 PM
Jerome,
If wishes were horses, your son would have a thousand ponies.
The feelings of impotence we have facing this New World Order are nothing compared to the flailing we do against the absurdity of life itself. I have gone through similar events with my daughter's health and hopefully your son will soon be as strong as my daughter is now.
Thank you for your openness.
Posted by: biklett | Sep 17, 2004 10:07:12 PM
Jerome, I will bring your son's situation to my church congregation this Sunday at 11am EST for a healing meditation.
I am reminded of a recent cancer treatment for my youngest brother. He had no health insurance. We discovered that NIH was doing a study on his particular cancer type. He was admitted to the hospital in Bethesda for three months inpatient. Most of the other patients in the study were children. Every day I travelled many miles from work to be on the ward and then many miles back to my home at night. We spent Christmas there, he could not eat. I remember the support of the other families, the incredible nurses, the doctors. I remember being worn out from focusing only on the crisis. I remember the recurring shock and the fear. Mine was nothing compared to my parents' anguish. Yet my brother was strangely calm and reassuring, the personification of hope for the rest of us.
When he was discharged, he was so thin, his hair gone, his movements like a frail old man. He gradually improved, all the while we wondered if it was safe to trust that he would be well again.
Some little miracles happened. He had met his future wife in the hospital. After five years, his remission was considered a cure. He has some lingering symptoms, some numbness in his toes. He lives with his wife in California, they run a business together now.
I don't know what would be helpful to say except to know you are not alone. Let the medical staff and your friends care for you while you all care for your son. He is cared for, thought of, and surrounded by healing work, physical and meta- physical.
Posted by: gylangirl | Sep 17, 2004 10:24:12 PM
Jerome,
Words are often useless in situations like these, but it is all I have to give you so I will try to make them worthwhile. You are experiencing my worst nightmare, my deep, nagging fear that one of my children or my spouse would die or become gravely ill.
As someone who had his first open heart surgery when I was younger than your son, and now as a parent with two daughters, I sincerely believe that the parents have it worse. Only now that I am a parent can I comprehend the unfathomable love for one's child that goes to the very soul of a parent, the love my parents had and must still carry for me, and it boggles my mind to think how they agonized over me, not knowing if I was going to live a month longer or a year or five. And now I know, and I feel for you that aweful, heavy pang nested in my chest below my heart, the heart that was once the heart of some other parents' child. It is the sadness of an irretrievable loss and the fear of that loss and sadness; it feels as if it touches eternity and goes on forever with it, the two bound together. Compared to happiness, sadess seems much more enduring. The death of children and civilians in war often causes me to think about all the sadness and grief in the world and I wonder how we bare it.
This fear and pain you know, you don't need me to tell you. Fortunately, if happiness does not seem as persistant, the will to live certainly does, and no more than in the young. Mercifully, young children do not comprehend mortality as adults do, they have not lived long enough to know what they will miss or how perilious life can be. The young are resilient and often times prove stronger and heal much more easily and faster than adults. The feeling of physical pain is not remembered. Jerome, know your son is strong, know that he is resilient, that he can handle what ever comes his way because children are amazing. And in your sadness and fear try to know that with parents that love your son as much and as deeply as you and your partner do, you are giving him every chance in the world of living and growing to be the inteligent caring man that his father is.
My heart reaches out to you and your family, my thoughts are with your son's good health and strength. I cry with you as a parent, and have faith in the strength of your son as a child who survived when he was not expected to, then survived again to partner with a wonderful woman and see two beautiful girls into the world. Blessing to you and your family.
Once, for a brief momment I thought I was going to die. This summer for a brief momment I was certain my wife had drowned in Lake Michigan. Both were equally horrible, but I imagine that having one of your children in danger is worse still. The realization of powerlessness in the face of existance is crushing.
Posted by: Stoy | Sep 18, 2004 1:03:23 AM
Pardon the awkward last paragraph, I meant to remove it or have it further up.
Posted by: Stoy | Sep 18, 2004 1:07:46 AM
My thoughts are with you Jerome.
Your son will be fine and make sure that every day that you are alive you love him and make every day the greatest day in his life.
Posted by: Cloned Poster | Sep 18, 2004 1:21:12 AM
Jérôme, those little ones are tough. Be prepared to be surprised about the strength of your son. He wants to be with his loving father - and mother.
As I sit at my desk reading, my thoughts occasionally wander to your post; your situation reminds me of that of an old friend whose partner has a very serious illness. How differences shrink in adversities. Nations are a sham, and we are fools to let the politicians' ideologies get between us. Be well.
Posted by: teuton | Sep 18, 2004 3:41:01 AM
Jerome, words fail me. This last year or two I have waited for more than one friend to get the CT scan results or to recover from surgery. But a child -- that is very hard. Wishing you every lucky break in the book. Sometimes the worst doesn't happen. Sometimes the treatments work, and a year later you're looking at a healthy human being and finding it hard to remember how perilous their condition was. I'll hold that thought for you -- with both hands.
Joie de vivre? riding my bike down the hill from work today, long late sunlight slanting across the blond dried grass of the foothills. The first chill of Fall in the air. Pleasant anticipation of a cool evening, perhaps a sprinkle of rain tomorrow (the first of the season). The scents of early Fall, dry as dust but with the promise of winter rains to come -- just breathing is good, the air is almost effervescent and the easy downhill run is like flying. Just cool enough to look forward to a proper hot meal.
The weekend ahead. Plenty of things to do -- too many! -- and still, dei gratia, having the strength and skills to do them. At my age you count your blessings: hearing, sight, coordination, muscle and brain all still working well enough to get by. It is a pleasure simply to be alive and functional, to have a life with engrossing little tasks and pursuits, not to be imprisoned or enslaved or pursued across deserts by implacable enemies. To have food in the pantry, books on the shelf, a roof over one's head, to go to sleep without fear, to be able to choose to do one thing rather than another -- these joys I never take for granted nor ever tire of appreciating. Not for all the flags, gilding, uniforms and hifalutin speechifying in the world would I willingly trade them.
Posted by: DeAnander | Sep 18, 2004 4:05:38 AM
Jérôme, you said:
and he has recovered amazingly quickly, coming home barely 4 days later
Cherish the positive moments: your son not having to spend long nights alone in a foreign place, the little steps he will take to recovery... The first time when your family goes out for a stroll again...
Whatever the outcome, what matters most is the love and bond you'll have from this day on. Not just you and your son, but your whole family.
Be strong,
fb
Posted by: fiumana bella | Sep 18, 2004 4:25:27 AM
Jérôme, Godspeed my friend. I couldn't Imagine the pain. My thoughts are with you and yours.
Posted by: Uncle $cam | Sep 18, 2004 5:08:49 AM
jérôme
be strong
do not run awy from yoor fragilié
nourish & be nourished by it
still steel
Posted by: remembereringgiap | Sep 18, 2004 10:37:59 AM
Jerome mon ami, courage. Toutes mes pensées vont à toi, ton fils, ta famille. Tu sais, il y a vraiment de très bonnes chances qu’il sera guéri, ils font des miracles aujourd’hui.
Quant à moi, aujourd’hui c’est le grand branle-bas, je virevolte entre armoires, lessive, tri, boites, des vieilles photos, l’album retrouvé, les pulls troués, à l’odeur d’une nostalgie pure, les peluches - Mon dieu, les peluches. Les valises, les papiers pour les impots, les chaussures de ski, les gants verts égarés...
Les draps sont étendus sur la terrasse, 8 en tout, les couleurs vives claquent au soleil.
Mon fils a 18 ans, il part étudier dans une autre ville. Il est fou de joie car il a trouvé un logement past trop cher (ici c’est vraiment la galère, cela peut même compromettre les études, il y a des étudiants qui vivent dans des Formule 1 et dans des voitures, etc.)
Maybe it is rude to write in French. So it was a day of laughter and questions, turned to the future, also filled with the pesky present, all those objects .. long to-do lists running over several pages. (My 18 yr old son is leaving home.)
Then, I had to give him his father’s death certificate. I also had to open a box of his father’s papers, and sort some of his clothes. (When he died I did the minimum.) So in this busy present, turned to the future and filled with plans, the past came hurtling back with a knock out punch. The Devil in person was here, wearing crocodile boots, heels tapping, grinnng sardonically, lighting up a Chesterfield. (I personified death at the time.) My son felt a presence too, but a different one - he said his father’s ghost was pleased, his father would have been happy for him, and would have said - go man, great.
When his father was ill for two years and then died I learnt that the message ‘take everyday as it comes’ or ‘treasure special moments’ represents a natural adaptation that takes time. One can’t order oneself to do that - it is best not to try, and ignore the advice, let things go. If one tries too much to control one’s thoughts, feelings and behavior one slips into a strange ersatz world which is not good for anyone, particularly not for children who understand everything and hate to be snowed under or lied to. People’s instincts are good, they adapt, and bit by bit one does actually take things one day at the time .. Anyway...everyone has their own way.
Strange, Jerome, that your message comes just on this day. Again all my thoughts.
Posted by: Blackie | Sep 18, 2004 1:10:33 PM
Jerome,
It was brave of you to share with us. I can barely imagine how the world must seem to you right now. May fortune be kind... keep us posted if you can.
We have no children, but have many animals. It's sort of like wading in life, being surrounded and supported by a vibrant perceptual web.
I hope this community can be something like that for you. Bless you and your family.
And all of you.
Posted by: OkieByAccident | Sep 18, 2004 6:56:49 PM
