Regine's Book (23 page)

On July 9, 2009, Regine posted her diary entry from April 27 on her blog:

Diary: Monday, April 27, 2009

I
hate it when people tell me they're dissatisfied. Dissatisfied with what, I wonder. You shouldn't complain about your life to someone who's hanging on by a thread. I don't appreciate others taking life for granted when I would love to have even a small portion of what they have ahead of them. I don't want to talk to those people; I block them out because they sap all my energy.

Why don't they say something nice instead, and tell me that I'll get well. I like to hear that, even though sometimes I react negatively to those kinds of comments, too. (“How do
you
know?” I think.)

I'm struggling with how I should feel and what I should believe. I'm kind of ambivalent. Will I live or die? Am I on a voyage toward the darkness of death? Or am I heading toward light and life? Nothing is determined yet.

I'm indifferent. I don't want to live or die. I think it's better this way. I shut out feelings of despair, sorrow, and terror. I don't get anything
out of them. I hold things at a distance. But deep inside I know they're there.

I keep myself busy because I'm stressed. I have to do something all the time just to avoid those impossibly intense emotional reactions. I'm not detached; I'm just tired of all of this. Tired of fighting for something that should be a given: life.

I'm so sick of
trying
. I question deep down if this will ever work out, and while I still hold on to hope, I've lost my confidence. Hope has faded so many times. Do I dare hope again?

I'm struggling to feel anything at all. Even when I sometimes start to feel happy, I know that I'm really not. It's a superficial happiness, a strange, hollow feeling that's hard to describe.

People say that I have to believe things will get better—as if that will make me get well. If only it were that simple. I've experienced the world's dark side. I've seen so many people suffer—including myself—that I've had to stop believing in this being a “good” world. There can't be meaning or a reason for all the bad stuff that happens. I get angry at people who try to convince me otherwise. No, life has no meaning. That's what I say to people, and it's definitely true. The fear of no longer existing never goes away. I'm afraid to leave the world and I don't want to do it. I think about my family, and about my friends. I have to fight for them. I can't leave them behind with that sorrow. I have to try everything I can, despite how bleak everything looks. I'll try to convince myself that the treatment will work, but for now I just have to wait.

But waiting is a horrible experience with something like this: It's a time filled with uncertainty and terror. No one knows what will happen. I have one foot in the grave, and while I'm hoping to get out, doubt holds me back.

Regine's entry resulted in 237 comments. Here's a small selection, including Regine's responses:

There are definitely more people than just me who are rooting for you. You're not alone in this. I really feel for you. If there were anything I could do, I would do it. But I feel like all I can do is hold out hope for you, and believe in your cause. With respect to you, I
do
believe in goodness, so I hope with all my heart that everything will work out. But, Regine, even if you're scared, anxious, etc.: You must not stop living. Think about all the fun things you could do during that time when you're sitting around feeling scared. I'm not saying you should listen to me. You probably think this is a dumb comment; I'm only fourteen, and I probably shouldn't be writing since I don't know anything about this, but I just don't want you to stop living. Don't stop enjoying yourself, and doing what you want to do. You never know where the path will lead, and I hope with all my heart that everything works out! You're an inspiration to us all! Don't forget that.

—
Silje

Little Silje: Thank you so much! Even though you're “only” fourteen, as you say, you show incredible insight into other people's situations.

—
Regine

The meaning of life is contained in people just like you, Regine. What you give to so many people is what makes you immortal. You're making an impact. That's why it isn't a question of time. Of course you want to do everything there is to do. Of course you want to live. But even if your life isn't as long as an old woman's, it's still a whole life. With your fantastic blog, with your wisdom, openness, and the strength that you share with us all, you have accomplished more than many people can dream of. I hope and believe you will make it, and get well.

—
Helle

I sort of understand how you feel, since I have a terminal form of cancer myself, and I can only be treated for a limited amount of time. Luckily I'm forty-nine, so I've gotten to live for a while, but I'm absolutely not ready for the end. I think it's like that for everyone, regardless of age. When things get tough, I think about everything I'll get to avoid when I'm gone—all the bad and unpleasant things in life. I guess that's kind of gallows humor, but it helps a bit. At the same time, I try as hard as I can to steer my thoughts away from what's painful, and it works really well. I read this quote once: “The deeper the sorrow, the deeper the silence”—and that's how it is. You write so beautifully, so movingly, and so directly about some of the most difficult things there are: disease and death. It helps me because then I understand I'm not alone. Hold tight to life for as long as you have strength and as long as you can. I feel you have it in you! Hugs and kisses from someone unknown to you!

—
Ann-Kristin

“The fear of not existing never goes away.”

That sentence almost knocked me out of my chair. I don't know, it was just so…powerful. God, I'm getting totally emotional. ☹ I'm sitting here sobbing…Typical me! But this time there's a good reason for it!

—
Vilde

Thank you so much for all the nice comments. I'm speechless. I'd like to answer each and every one of you—many of you write so fully and deeply. I hope you know I really appreciate it, and that it means so much to me.

—
Regine

Tuesday, July 14, 2009

S
o I'm done with the Vidaza cycle now. It went smoothly this time! The only side effects so far have been some pretty mild stomachaches. But that's all part of the deal right? Thank you so much for all the kind comments to my last post—it means so much to me! Some of you almost wrote complete letters, and I really appreciate your taking the time, because a lot of you are really profound and insightful writers. I'd like to answer each and every comment, but that's just not possible. I'll respond to your emails soon. I just haven't been up to it these last few days.

I haven't done anything really interesting recently. Eli and I have just been watching a ton of movies, though, and we also went out to eat one day (which was so nice!). From what I can tell, the blood test results aren't that bad right now. My blood percentage and blood platelets are stable, and my immune system has improved slightly. On the other hand, the white blood cell count is also rising, and that's not good. They're going up evenly and steadily and I'm scared they'll “take off” like last time. That would be catastrophic. It's spooky and ominous to see them just going up and up. The plan is to repeat the cycle in two weeks. Hopefully we can stick to it but it's hard to know for sure.

I received a guest post today by email. I think it'd be nice to repeat because the writing was really good, and the woman who wrote it has a gripping story to tell. Maybe that will be my next entry.

Wednesday, July 15, 2009

I
received an email from a woman named Ashild. She really wanted to do a guest post here on my blog. Ashild is forty-six and has a lung disease. She's been waiting eight months for a lung transplant.

Extreme sports

Have you ever considered that the idea of “extreme sports” can be applied to a lot of activities that you won't necessarily see at the X Games?

The impulse that encourages us to take risks and “let the chips fall where they may” informs a lot of our decisions. Doing what you want, or even what you set out to do, can cost you your life and your health. You don't even have to climb a mountain, cross a roaring river, or navigate a treacherous forest for disaster to strike.

And I'm not talking about broken hearts and pain and love and that kind of thing.

I'm saying that for some people, just leaving the house takes incredible mental strength: It exhausts them more than a long walk in the mountains would exhaust a healthy person. And for some people, it's a greater act of courage to just express an opinion to a new acquaintance than it is for someone else to deliver a lecture to a packed auditorium. For some people it can be so physically demanding to go to the theater that they have to prepare themselves for longer than a pro football player would take to prepare for a championship game. Some people have to rest for days after a trip to the mall, whereas some runners just need a few hours to rest after the New York
Marathon. The goals that we set when our health is bad are as unstable and ephemeral as the weather on Kilimanjaro.

So the basic idea I'm trying to express is that everything is a matter of courage; life is about taking chances, about embracing risk, about daring, about going beyond your limits, about tolerating uncertainty, about staying focused, and about knowing that, despite everything (or perhaps because of it) your efforts can have catastrophic results. On the other hand, it's just as likely that you'll wind up with a genuine feeling of victory. It all depends on your own starting point, your own assumptions, your own goals.

I know a few people involved in extreme sports these days. I cheer for them and raise the flag as high as possible—whether they finish first or last or not at all. Good luck to all who try!

The sports awards ceremony

Once a year, TV2 broadcasts its annual sports awards ceremony. Prizes are awarded to the most fearless of the fearless, the best of the best. Fame, honor, and glory are heaped upon athletes in a range of sports. These athletes are impressive; they have iron wills and amazing staying power; they're stars, and when they get a little luck, they win.

One after another they say thank you after receiving their awards. Thanks to family, coaches, and support systems—to everyone who backed them up and helped them achieve victory. “I could not have done this without you,” they say. “Without you, I would not be where I am today.”

They all share an uncommon willpower, lofty goals, incredible focus, stamina, and muscular bodies. They also share a large support system that cheers them on, and people in that support system put their own interests aside so that the athlete will have the optimal conditions to focus, train, test, sleep, and eat. And if the athlete struggles
mentally, he or she has supporters and psychologists to help him or her get over the hump and find the strength and courage to press on.

Because in the sports world, it's completely acceptable for athletes to put themselves, their own needs, and their own goals, ahead of everything else. To expect that people around them will support, drive, cook, be kind, show interest, babysit, etc., so that they can focus all of their energies on their own career and accomplishments is a kind of culturally accepted egotism. These athletes have a self-centered focus that is noble, in its way, and no one thinks of their “assistants” as tireless or kind or self-sacrificing. If they're lucky, they'll get a special mention on an awards show at some point. At least, that's what they hope for…

Maybe you understand where I'm going with this…

Imagine if all of us who are sick or struggling with one thing or another received the same support!

Imagine if we had the same professional support network around to back us up when
we
got exhausted!

Imagine if we were able to accept help and support from family and our networks without anxiety or fear that we were being a bother, and imposing on their lives!

Imagine if we could be seen and recognized for the daily effort we make for our health!

Imagine if someone could see us as heroes, everyday heroes!

Imagine if TV2 had created an award ceremony for us! The survival athletes!

“The show must go on”

It's an age-old saying for artists and actors, and one of the oldest mottos for people in the circus. But it can also be a metaphor for life itself.

That's how I think of my health situation. It's a show that has to be carried on, day after day, no matter what shape or mood I'm in.
I drag myself to health consultation after health consultation. I have to answer tons of calls and emails to arrange consultations with doctors at one hospital or another, pick up medications at the pharmacy, straighten out issues with the Norwegian Labor and Welfare Service. Last week I was at the hospital for several days. Then there are the treatments, inhalers, and medications that must be taken every single day, and at the moment, I'm taking intravenous medication as well. Nothing happens by itself; nothing is arranged by itself. I always have to hang in there, drive myself everywhere, arrange everything so that things don't grind to a halt.

I wish the stage curtain could go down once in between, that I could pause the show, that a champagne bottle could be popped, and that backbreaking work could be rewarded with honor and applause. I want to experience the thrill that an actor feels, when the curtain goes down and the applause rises in the darkness.

But the analogy has to end somewhere, and fame in this case would preferably be substituted with health and happy days instead (which would continue for as long as the show needs to go on).

People in the industry say, “There's no business like show business.” I'm happy that I didn't choose that path in life. It's enough for me to perform well in the show that is this life—even without the applause.