Here's a joke. I heard it in a too-hot stand-up tent on the last day of the Phoenix Festival in England, in 1996, and it stuck. I'll paraphrase:
I'm watching the news, and this guy comes up in front of his burning home, and he says to the camera, "You know, I always thought stuff like that only happened to OTHER people!" And I'm looking at this guy, and I can't help thinking, "OK, but you ARE other people!"
That's all. That's the joke. Don't know why it stuck with me, but it's there. It's there every time I look in the mirror, actually.
Because you're not the only ones who read this and feel a comfortable distance. I do too. Even now, I will read a blog post from someone who's going through the same stuff I'm going through, and think to myself, "Man... It's tough, what other people have to go through in this world. What's for dinner?"
Then, at other times, I'm forced to face reality.
Madeline comes home from school. I open her backpack and see two drawings. Looks cool, what is it?
"It's a dying lion. But he feels better because he's resting in bed."
"And what's the other drawing?" I ask, afraid of the answer.
"It's a dying bear. But he's also resting in bed."
OK...
I get very little insight into what she knows and what's going on with her. She's 4, and what should and does appear to concern her are her friends, the kid who pushes other kids in preschool, and what dessert she'll have tonight. But also, apparently, death. And I guess the feeling that as soon as her dad stops resting, he would die.
We told her I was sick. She knows I've been to the hospital a lot. But from there to drawing dying animals... I wish I could grab her right now and make it clear to her that everything would be fine. That with or without me, she would grow up to be an amazing woman. That she has a mother who would always take care of her and always love her, and an older brother who would always be there for her. But how do I say something like that? How do I even hint about the possibility of not being there for her? Not experiencing life with her?
Since starting this post and today, I was at the hospital for 6 days. I had pneumonia, a 104 fever, and the oxygen tubes back in my nostrils, and it turns out breathing in and out wasn't as easy as I thought it would be. Funny, it seems so easy now when I'm back home. In and out, and you live another day. Easy peasy.
I go on the treadmill--doctor's orders. Since my pulse is constantly over 100, even when I sleep, I don't want to push it too much, so basically, I walk for half an hour and watch Netflix. What could be better than that? And it makes me feel normal.
And for a moment, I forget.
We're going to the beach tomorrow. Don't be sick. Don't be sick. Don't be sick. Don't be sick. Don't ruin it for everyone. Make it work. Don't be sick. Please, I don't ask for much, but just give me these 4 days. Four healthy days. Please!
Making it there and being healthy enough to spend time with the kids was the most important thing I could ever do. I didn't get into the water with them, but I was there. I was there at the beach, and I was there at the Ocean City boardwalk, bravely protecting the family from the evil seagulls who'd stop at nothing to get their fries. And I was there to take pictures and to finally shift my attention from myself and from my "condition."
Now I'm back home and I really want to live. Is that silly or what? Funny time to choose to live... I've read the Epictetus quote about death again today, trying to put things into perspective. Feel free to consider "The Giver" whatever you want it to be. It could be nature, or God, or anything you could imagine has put us here.
And dost thou that hast received all from another's hands, repine and blame the Giver, if He takes anything from thee? Why, who art thou, and to what end comest thou here? was it not He that made the Light manifest unto thee, that gave thee fellow-workers, and senses, and the power to reason? And how brought He thee into the world? Was it not as one born to die; as one bound to live out his earthly life in some small tabernacle of flesh; to behold His administration, and for a little while share with Him in the mighty march of this great Festival Procession? Now therefore that thou hast beheld, while it was permitted thee, the Solemn Feast and Assembly, wilt thou not cheerfully depart, when He summons thee forth, with adoration and thanksgiving for what thou hast seen and heard?--"Nay, but I would fain have stayed longer at the Festival."--Ah, so would the mystics fain have the rites prolonged; so perchance would the crowd at the Great Games fain behold more wrestlers still. But the Solemn Assembly is over! Come forth, depart with thanksgiving and modesty--give place to others that must come into being even as thyself.
And it helps. It helps to know people have been thinking about these things 2,000 years ago. I'm not the first one who wants just a little bit more. When breathing in and out becomes almost impossible--just a little bit more. Maybe one more trip to the beach? How about one more car ride? Or even the opportunity to see those faces smile just one more time?
Living like that, with the awareness--the constant awareness--is strange, but maybe the dark cloud hovering above me is not that dark?
See, there's a cloud above me, and no matter what I do what I say where I am and who I'm with, there's a cancer and mortality and an end, and I'm almost constantly aware. By the way, I assume that if I have a cloud of impending mortality, you have one too, since give or take a few years, we're all doomed. But if you're not aware of the cloud, are you at some kind of a disadvantage? Or should I try to re-learn from you to ignore the cloud?
I'm not sure what to think. Life under the cloud is different. Here's a small and silly example: On the one hand, now I know that the whole "One day I'm going to learn French" that's been at the back of my mind is not going to happen. That's it. On the other hand, I don't feel bad about it anymore. For years I've told myself "One day," and when another day came and I didn't improve my French, I felt guilty. But that's done. I speak enough languages. I play enough musical instruments. I know enough DIY. I have zero gardening skills. Very little cooking skills. Constantly feeling like I should be more? Constantly feeling guilt? Hey, that's pre-cloud thinking. Maybe the cloud isn't a morbid distraction from life, but a gift, allowing me to stop treating the day that's passed like it was wasted, and instead, letting me concentrate on all the good that's happened? I saw a butterfly today. It was a good day.
Another meeting at the hospital. Another blood test body scan brain scan. There's a reduction in the number and in the size. I'm doing good. I mean doing well. I'm a little slow, a little weak, a little tired, but 3 months into this thing, I'm not doing too bad. I'm fighting this thing, I'm a fighter. If by fighting you mean getting out of bed in the morning.
I'm not sure what this "fighter" business means, but I guess I know when I stop trying to fight.
I've never liked the idea of getting old. I remember for years, going to visit my grandmother, and her only reply to "How are you," was, "You know... Old age..." And what was her reward for surviving old age? A further deterioration of body and mind. Nearly blind at 99, she still recognized us all. Still remembered our kids, even. But at the same time, she was elsewhere--you could tell she was elsewhere. I remember one time I was sitting with her in the Home, and she suddenly raised her voice and said, "Three kids I put through university! No one can say I didn't do that!" Which was somehow the most personal thing she'd ever said to me. She then quickly moved on to our usual Grandma-Grandson relationship: the "How are you, have a cookie!" talk. And she was one of the good ones, mentally. The other grandmother didn't recognize me when I was visiting, until suddenly she'd remember, say something relevant, and sink back.
So I didn't want to become that, and I have to admit that the possibility of avoiding that became a slightly morbid but nonetheless real silver lining. But what if I get old age symptoms soon? What if I lose my eyesight? Lose my ability to walk? What if I lose my mind? One more brain radiation, I was told this week, and I'd start losing it--just simple stuff, just forgetting things for a start. But it's my brain! It's me! Without it, what's the point?
That's when I stop being a warrior. If I become a young old man, unable to see, walk, and think clearly, I might just wake up, turn the TV on, and wait.
And meanwhile, tests are good. The bad stuff is shrinking. We even have another trip planned, including the zoo at Central Park in New York, apple picking in Vermont... There's still a lot to do and a lot of life to experience with the kids. I love life--I just want to live it on my terms.
Breathe in, breathe out.
Breathe in, breathe out.
Still surrounded by love.
Still thankful.
Still here.
"Constantly feeling like I should be more? Constantly
ReplyDeletefeeling guilt? Hey, that's pre-cloud thinking. Maybe the cloud isn't a
morbid distraction from life, but a gift, allowing me to stop treating
the day that's passed like it was wasted, and instead, letting me
concentrate on all the good that's happened?"
One more nugget of wisdom from the still sharp brain of my friend. Thank you.
Thankful you're still here.
I don't really have a profound comment to make. Just glad to see you writing and writing well. Good stuff, my man.
ReplyDeleteIt is so good to see your words. Thanks, man.
ReplyDeleteI really love your idea of the cloud. You and your family are in my thoughts.
ReplyDeleteStripping it all down to the authentic priorities. Breath and wanting to live. Keeping best thoughts and prayers ... hope for less and less of the bad stuff, and more ground for the fighter to do his thing...
ReplyDeleteI remember asking a cousin who had cancer about how he felt and he said יהיה טוב. I can't say I understand exactly what you are going through but I am guessing it is day by day and some days it is easier to say things like יהיה טוב.
ReplyDeleteRegardless I still say רפואה שלמה and am glad you went to the beach with the family. Someone has to keep the gulls at bay.
Wow. Oren you inspire me so much. Thank you for writing. Amazig
ReplyDeleteSo much in this post made me stop and think. Were you always this profound? Maybe, that's one more thing the cloud does.
ReplyDeleteLove you all. Thank you for this beautiful post.
ReplyDeleteLike Matt, I have nothing inspired to add. You are the one inspiring us all, anyway
ReplyDeleteI can't even pretend I have anything to add, nothing that would help at any rate. I wish I could go on the apple picking trip. I know my mom & dad live ecause Vermont just isn't that
ReplyDeleteMy phone hates me. My mom and dad love in VT is what I was tring to say, and I wish I were there to go on the apple picking trip
ReplyDeleteThank you! And same to you!
ReplyDeleteTrying my phone hates me.
ReplyDeleteThank you!
ReplyDeleteThanks! I hope so too...
ReplyDeleteThanks. I don't know if יהיה טוב sounds that great... It means things are bad now, but they're not--most of the time.
ReplyDeleteThanks for reading!
ReplyDeleteHa, I don't know about that. The act of writing makes me think about stuff I wouldn't otherwise think about, which is part of the reason I wanted to write a post after the previous one. Thanks!
ReplyDeleteHa, I think your parents love Vermont?
ReplyDeleteAnd there you have the perfect example of the challenges with trying to understand nuance in a second language. I read it as things will be good and take it as being more optimistic.
ReplyDeleteThe point of which is it shows me that your command of English is a thousand percent better than my Hebrew. So I'll still to English this time and say I am glad things aren't bad most of the time. :)
There is so much and nothing really to say -- except breathing in and out and being present -- as you wrote in the last piece -- gives us all another chance to take it all in. I hope you continue to find the space to keep more of your thoughts whether you share them here or just with your family.
ReplyDeleteAlways sending you and your family the best thoughts.
Oh, I don't know about that. I guess it is pretty nuanced. Maybe I'm wrong too--I haven't lived in Israel for 20 years. I'm 20 years behind on slang, so it might as well be a whole new language for me.
ReplyDeleteThank you!
ReplyDeleteMy Grandma is 91. I face-timed with her a couple of days ago. She has that elsewhere look you described so well. But I understand. And it's okay. I told her I loved her and she said, "I sure do too." Just a simple moment shared. Not that different than the moment you gave me by writing this and for the memories it conjured. I am thankful for it and for simple moments shared.
ReplyDeleteLove you...and sending strength, prayers and hugs...
ReplyDeleteEnjoy the zoo in Central Park and apple picking in Vermont. Thanks for sharing your thoughts with me. Greetings and hopefullness from FLA.
ReplyDeleteThank you for reading and for sharing your own moment.
ReplyDeleteThank you!
ReplyDeleteThank you! Hopefully, we'll make it to FL one day too.
ReplyDeleteI was that little girl at one point in my life. My friends wrote about baby bunnies and flowers during Spring and I wrote that the sun shined so bright it killed everyone. I can tell you, that regardless of where this cloud takes you...the bits you write here about her will save her a handful of therapy sessions. Your writing is such a treasure.
ReplyDeleteI think your cloud just changed my whole life. Thank you for that. You are damn right, we are all doomed, just not sure when a bus or a medical conversation will make it imminent. But I really, really pray and hope that you have so many more days weeks months and years to see your people smile and for them to see yours. All the best to you and your peeps. xoxoLindsay
ReplyDeleteThe last thing my dad ever wrote (he was a writer) was this poem called "The Heartbreak of Breathing." He had been diagnosed with lung cancer at the time. Years after, I looked for the poem and couldn't find it. My sister and mother couldn't even remember it. It's possible it was just the subject heading of an email or four words scribbled on a napkin, but there's no way I made them up. Hearing your story actually reinforces that thought. And it reminds me of my father. Today is his birthday. So I guess I would have been thinking about him anyway.
ReplyDeleteKeep breathing in and out. And enjoy the butterflies. The hell with French.
The cloud is the gift that comes along with the cancer. Your blog will help others to "get it".
ReplyDeleteDon't pay too much attention to statistics. My husband kept telling me " You don't have to win the gold medal, you just have to stay on the podium."
You are unique and your reasons for living are your "get out of jail free" cards.
I invite you to read "another person's cancer blog" ;-) here :
http://leemorgan-onwardthroughthefog.blogspot.be/2010/12/there-are-rumors-i-have-tumors.html
Your feedback would be most interesting to me.
Keep breathing and above all, keep smiling.
My wife told me today that my girl had a nightmare, with monsters chasing her, but then she realized they were chasing me...
ReplyDeleteThank you!
Ha, screw French.
ReplyDeleteAnd I'm sorry about your dad.
Thanks. It's great that you feel so well that you've neglected your blog for a year. And although I can't imagine myself going on ski vacations like you, I do feel well enough to travel, which is a big change from a month ago.
ReplyDeleteThere's a great book that I can heartily recommend if you haven't already read it: "The Emperor of all Maladies". Full of hope.
ReplyDeleteI've become a fan on your FB page so I can follow along your adventure.
xxx, Lee
Thanks! I've heard this book mentioned before. I'll look for it.
ReplyDeleteAdmittedly, I've been keeping a comfortable distance. We all must face mortality. We just don't really want to think about it. But now I'm thinking about it. And I want you to stick around.
ReplyDeleteLove, love, love this post! It really puts life into perspective - I'm so happy you were able to go to the beach and enjoy your family, and that you've got such great future plans. AND that there is some good medical news! Thank you so much for this post :)
ReplyDeleteThanks! There have been some good periods and some bad ones in the last few months, and it keeps changing, but I definitely feel better now than I have in a while. Hope it lasts as long as possible.
ReplyDeleteThe words help and they'll be here always. I like to think that writing gives us a little taste of "on our terms." We could all do with a dose of reality on that other guy, thanks for the reminder. Great post, hope you'll continue to write. Thinking off you often, buddy.
ReplyDeleteThank you!
ReplyDeleteThanks for reading!
ReplyDeleteOren, your writing is beyond brilliant! You are truly an artist! I am reminded of when Clapton left the stage in the middle of a song he had not mastered, as Hendrix blew everyone away. Clapton's comment: "you didn't tell me he was that f*cking good!" Your work is truly masterful.
ReplyDeleteHa, I don't know about that, but thank you!
ReplyDeleteThe idea of "an end" really puts things into perspective. A woman broke down at the bus stop the other day because she'd had a hard morning. One of her kids threw up and the other two threw fits about putting on their shoes. She looked at me and said, "Your whole family has been sick for over a week and you aren't crying at the bus stop!" Everything I experience now goes through the lens of after-Bryan-died. It really makes life sweeter, more full of joy, easier to handle when I think of how suddenly it could just stop. This is what Bryan left for me.
ReplyDeleteYou are reinforcing that lesson for me.
That being said, I may rage a bit at the world if you don't leave for you fall travels soon. Especially if the leaves have the audacity to dare fall off the trees before you get to go! My zen only lasts so long. :)
You guys are in my thoughts. I imagine boxing you up some strength and peace each time I meditate.
Thank you! We still plan to go--probably this weekend. I haven't been feeling as good lately, but I'm probably still good enough to sit in a car for a few hours... I hope.
ReplyDeleteI found you by your article on HuffPost. I read that and clicked through to read Marc Block's blog, then I came over here and read more from you. What I want to say is, thank you. I've only read a couple of posts, but what you said about the cloud really resonated with me... Perhaps because I'm stuck in that place of feeling like I haven't done enough, or like I've wasted my day when I don't get everything on my ever mounting "to do" list done.
ReplyDeleteAlso, you reminded me that I'm lucky. You're right. We all do have the cloud above us. I mean, no one gets out alive. But what matters isn't what's going to happen tomorrow, or what happened yesterday. What matters is what's happening right now, and I'm grateful to have stumbled across your blog so that I could remember that.
Breathe in, breathe out.
I hope you're having lots of good days.
Oren we seem to share many thoughts and outlooks on daily life, thankfulness, gratitude for our existence and the frailties of life. I am a ALL leukemia survivor, bone marrow transplant survivor, and during my treatments and hospital stays where I was a millimeter from death, I have thought so many of the exact same things about my life. Thank you for writing your experience down and sharing it with us. Reading your writings, I believe you are a brave man, an open soul, someone who appreciates each moment. Bad things happen to good people. I'm sorry for your illness, but thankful for your willingness to share your perspective. It's one that only comes from being in such a situation - too many of us take things for granted. I have had my eyes opened since my diagnosis. You help everyone who reads your posts to slow down, rethink life, and appreciate it all. That is a special gift to have. Thank you for sharing it.
ReplyDeleteI've had some rough days after chemo started, but the last few days have been good, and that's all that matters. Thank you!
ReplyDeleteThank you for reading! And continued good luck if you're still in treatment.
ReplyDeleteDid you get my posting from yesterday? I don't see it.
ReplyDeleteI just read your blog and am touched by your thoughts and insights. You have a remarkable perspective on life, Oren, and what a gift you are leaving your wife and children. As a three-time cancer survivor I, too, have been forever changed by it and learned to let go of the past and future and now try to live in this moment. I look forward to reading many more of your wonderful posts!
ReplyDeleteI don't know. I didn't delete any comment. Maybe you commented on a different post?
ReplyDeleteThank you!
ReplyDeleteI am with you, whereever you are. Thank you for your honesty.
ReplyDelete