Thankful Thursday 2

washing-feet-JesusThis also a Friday edition of Thankful Thursday, but that’s because I spent much of Thursday at the hospital with Bonnie, and then our internet went out in the evening when I was going to write this. Faced with such a daunting obstacle, I gave up and watched “Jeeves and Wooster” with Bonnie. Intent counts for something, right?

This week I am thankful to all of the kind people who have helped us in the last while. On Wednesday a bunch of ladies from the ward showed up and packed up our living room and our whole kitchen. They were amazing and cheerful as they packed up  all our junk (As a side note, if our house burns down while we’re in Utah, it totally wasn’t me).

There has practically been a parade of cheerful and helpful nurses and hospital staff. I don’t even remember all their names, but they’ve all been kind, helpful, and accommodating.

Various family members have sent money or offered to fly out to help us as we drive cross country.

Our contact at the Olcott Cancer Center was originally going to get us some free flights to Utah from Angel Flight, but when she found out that we wanted to drive she contacted a different group (who do not appear to have a website) and got us some gas cards.

Everyone wants to help, and even though things can suck, a little lift is sometimes all you need.

What does faith look like?

a-gattaca-1I’ve been thinking a lot about faith in this situation. How exactly do you go about having faith when faced with a terminal illness? I am a great believer in both religion and modern medicine, but in this case there is some clashing between the two narratives.

I believe in a religion where miracles can and do happen. I want to be open to that possibility. However, I also believe that usually what the doctors say is what happens.

How then can I exercise faith while still dealing with the medical facts. There are two approaches that I see people use, and both have advantages and drawbacks.

The first approach might be what I would call the “Gattaca approach.” Gattaca is a cool sci-fi movie where genetic engineering of humans is the norm. The main character (Vincent) was not engineered, but his brother (Anton) was.

*spoiler alert* (although really, the movie is like fifteen years old. I don’t think it counts as a spoiler.)

The brothers compete constantly but the younger Anton always wins. Years later they meet up as adults and try to swim across this big body of water that they used to swim in. In this final competition, Anton gives up before Vincent and has to be rescued. Anton asks Vincent how he did it and Vincent says, “You want to know how I did it? This is how I did it, Anton: I never saved anything for the swim back.”

I think for some people this is the kind of faith that they use. Or maybe I should say that this is the way they approach faith. It’s an all or nothing proposition. This would mean that I would have to believe that the doctors are all wrong because God is going to intercede and heal Bonnie miraculously. This would be fantastic if it happened, and there are lots of examples where this kind of belief payed off for people. When that happens, it can be a tremendous source of strength and inspiration. I think this is the kind of faith that let some of the prophets experience the kind of rejection that they went through and still remain faithful.

Unfortunately it can cause all sorts of distress. Sometimes even with all the faith you can muster, the thing you want doesn’t happen. What happens to your faith then? By single-mindedly focusing on one outcome, you’ve left yourself without a safety net, and you’re unprepared for the result. At it’s worst this kind of faith smacks of pride because you’re dictating to God what the outcome should be; nothing else is acceptable.

On the other side of things, there’s the more academic approach. I think these people believe in the idea of miracles, but they don’t believe or expect that miracles happen for them. Or they tend to intellectualize things too much and say that “if people had all the facts, then it wouldn’t even seem like a miracle. We would have predicted it.” These people tend to latch on to the idea that miracles operate by natural laws, even if we don’t understand all the laws yet.

This approach is appealing because it allows you to prepare yourself for the worst outcomes. Mentally taking the time to process and plan for the future is essential. It is also a good approach because most of the time the miraculous healing doesn’t happen. If it did, it wouldn’t be miraculous.

However, I’m not totally comfortable with this approach because of the way that it glorifies human intellect at the expense of God’s power. It doesn’t seem to leave any room at all for the miraculous. If you’ve decided that death is the foregone conclusion, then why would God step in and change that? Miracles work by faith, I don’t see how this approach exercises any.

As I thought about this issue, I remember one of the best conference talks that I’ve ever heard. It’s a talk called “But if not…” by Dennis E. Simmons from the April 2004 conference.

In the talk he tells the story of Shadrach, Meshach, and Abed-nego. They refuse to worship an idol, and for this they are about to be thrown into a fiery furnace. In response to the king’s taunt about their God, they reply, “If it be so [if you cast us into the furnace], our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand. But if not, … we will not serve thy gods, nor worship the golden image which thou hast set up.”

I think the “but if not” statement is the thing that combines these two approaches. There is a wholehearted trust that God can perform miracles, that he can intervene and save us. But perhaps more importantly there is a wholehearted determination to serve the Lord. That’s the attitude that I need to develop.

I think the last two paragraphs of the talk express this the best:

“Our God will deliver us from ridicule and persecution, but if not. … Our God will deliver us from sickness and disease, but if not … . He will deliver us from loneliness, depression, or fear, but if not. … Our God will deliver us from threats, accusations, and insecurity, but if not. … He will deliver us from death or impairment of loved ones, but if not, … we will trust in the Lord.

“Our God will see that we receive justice and fairness, but if not. … He will make sure that we are loved and recognized, but if not. … We will receive a perfect companion and righteous and obedient children, but if not, … we will have faith in the Lord Jesus Christ, knowing that if we do all we can do, we will, in His time and in His way, be delivered and receive all that He has.”

I couldn’t say it better myself. I know that God will deliver Bonnie from her cancer, but if not I’ll still serve Him.

How do you rationally approach your worst fears?

scylla-and-charybdis-bookpalaceI’m sitting in the hospital right now waiting while Bonnie undergoes a surgical procedure to make her treatments more convenient. My situation-my whole life-feels a little surreal. Cancer creates a lot of havoc in your life, but one thing that I never thought about is how strangely it forces you to deal with really horrible possibilities.

Last night as we were preparing for the surgery, Bonnie and I got talking about living will/end of life issues.

A: So you’ve said that you want a DNR (do not resuscitate) order later when we’re in Utah. What about tomorrow? What if you’re one of the statistically minuscule number of people who have serious complications in this surgery?

B: Tomorrow I definitely want to be resuscitated. I want to see all of our family.

A: Okay, what if you’re in a coma or something?

B: If my brain is dead, then let me die. That’s fine. I don’t really want to be kept alive if I’m a vegetable.

A: What about if you’re not a vegetable, but you have major personality changes or you lose like fifty or sixty IQ points? Should they take extraordinary effort to keep you alive at that point?

B: I have no idea. Do what you think is best.

A: Thanks. That sounds like a really fun decision to make.

Now take a second and think about this conversation. Really think about it. It’s horrible. Everything about it is horrible. Bonnie is discussing the imminent possibility of her own death or disability, and I’m talking about the possibility of losing the most important person in the world. Not just losing her, but of actually making the decision not to save her life. This is not a conversation that anyone ever wants to have, much less when they’re not even thirty.

This cancer just robs you of so many little things. There are so many injustices and indignities that Bonnie has to go through, while I sit helplessly on the sidelines, unable to protect her from the one thing from which she really needs protecting.

I think what really drives me crazy about this whole situation is that fact that I have to be relatively composed and calm about the actual decision. I have to be rational, because the only decision that I want control over-the only decision that really matters to me-is out of my hands. I can’t say, “I’ve decided that you’ll live and everything will be fine.” Once that’s gone, there are only bad decisions.

Choosing from a bunch of bad choices doesn’t feel like a choice at all.

I think L needs sensitivity training…

IMG_1251Whenever I hear the phrase “sensitivity training,” I think of an old ad campaign for Reebok. Do any of you remember “Terry Tate, office linebacker?” He would run around tackling people for doing annoying things at the office. In one episode he gets in trouble for what he says to a guy and has to go to a ridiculous sensitivity training.

If our family were run like a business, L would spend her life talking to HR. Being a four-year-old, she doesn’t really have a filter on what she says, so in the last few months there have been a slew of awkward and insensitive questions and comments.

With me, she tends to stick to unkind comments about my weight:

“Dad’s fat, Mom’s thin, I’m little.”

“Dad, don’t eat all of those or you’ll get really fat.”

I’m not even fat or anything. I have maybe a little paunch, but I’m not fat. Of course, my weight isn’t the only part of my appearance which falls under her merciless gaze:

“Don’t put that on! You’ll break it because your head is way too big!”

…Thanks for dredging up my childhood insecurities honey.

Bonnie is not immune to this. In her case L usually leaves her appearance alone, but I’m not sure that’s a good thing.

“Dad, you’re smart right?” “Sure.” “But Mom’s not smart though, right?”

“Here Mom,” *hands her a stick* “It’s a present for you before you die.”

Anyone have a good response to that? Because I don’t know what etiquette demands for the “here’s a little something for you until you die” kind of present.

Friends and neighbors aren’t immune to the questions and observations either. We had a couple over for dinner who didn’t have any children. I don’t know if it’s by choice or not, but I prefer not to ask. L, on the other hand, piped up almost immediately with “do you have a baby in your tummy?”

Even strangers are often impaled by the queries of my child. When we were out on a walk, we were passed by a Native American guy with long hair. L piped up, “Is that a boy or a girl?”

“It’s a boy, L.”

“But why does he have long hair like a princess?”

Why indeed.

Thankful Thursday 1 (Friday Edition)

IMG_20131127_165956155After yesterday’s downer of a post, I thought I’d do something more positive today.

I used to have a blog where I would try and write something that I was thankful for every day. My history of failures with topical blogs is something I’ll talk about another day, but with this blog I very quickly ran out of original ideas. It’s possible that I’m an ingrate, (I wouldn’t rule that out), but coming up with something insightful or clever or interesting to be thankful for every day just wasn’t in the cards for me. That blog really jumped the shark when I started trying to use things that I was learning about in school as posts. (“I’m thankful for polymers because they make life possible…”)

The truth is that the things that I’m thankful for don’t change all that much day to day. I’m thankful for Bonnie and the kids, I’m thankful for my house, for the country I live in, for my chance to attend IU. I’m thankful for Christ and the gospel and the scriptures. I’m thankful for books and learning, for a naturally curious disposition and for all my great teachers. I’m grateful for a supportive and loving extended family, ward, and community.

Even though a daily gratitude blog isn’t in the cards for me, I think it’s still worthwhile to take some time and express my gratitude for the many, many good things in my life. Therefore this is the first installment of what I will call “Thankful Thursday.” Yes, I know it’s Friday. Stop being so literal. Now, knowing how I am, there will probably not be a gratitude post every Thursday, but I’ll make it a somewhat regular thing.

Probably.

Let’s start with a depressing post

IMG_1206My wife is dying and there’s nothing I can do about it.

I’m sitting in the hospital this morning, waiting for her to finish a procedure where they inject chemotherapy drugs directly into her spinal cord to try and slow down the progression of the disease. It’s a treatment which no one even expects to work. The best we’re looking at is buying more time.

She’s 27 and she’s dying of breast cancer.

It’s been a little surreal this last week. On Friday, it was our sixth wedding anniversary. Bonnie called the doctor to get the results of a fairly routine scan. She’s been undergoing cancer treatments for the last year and a half, but we were supposed to be done with aggressive treatments for a while. Instead of the “all clear” that we were expecting, the doctor told her that he wanted both of us to come in on Monday to talk with him. That of course made for a nice, stress-free weekend while we tried not to think about all the things that could be going wrong.

My typical stress-relief strategy of “what’s the worst that can happen?” was useless in that context.

And then of course he gave us the news. That whole situation deserves its own post, so I’ll give you the short version. The cancer has spread all through her spine and part of her skull. It’s pushing on her central nervous system and there’s really no effective way for us to kill it at this point.

When you’re facing the death of a spouse, there are a lot of ugly words. Even words that didn’t sound so bad before have become really ugly:

metastasized

shunt

single parent

leave of absence

hardship exception

widower

One of the most frustrating things about this whole thing is that the grief doesn’t even get to be private for any amount of time. The day we found out about the prognosis we had to start making arrangements. Bonnie called her family, I called mine. I had to start talking to my school, Bonnie had to start working on the insurance. There’s not enough time for grief or silence, for just being alone with each other. The pain is immediately trotted out and shared with the whole world. People want to be supportive and they stop by and call and ask invasive questions, but I wish we could have had just a day or two with each other.

Cancer is a jerk.

People keep asking me how I’m doing, and I keep saying that I’m fine. I don’t even know how I’m supposed to process this situation, much less explain it to anyone else. So in lieu of actually talking to anyone who is physically here, I’d rather just send some thoughts out onto the internet. The internet is like therapy with more cowbell.

I think that’s the reason I decided to start this blog. I need to talk or vent or whatever and the internet seems to have an unlimited capacity for absorbing that sort of thing. Thanks, Internet.