It’s the Little Things That Make a Difference


A few months ago, Bonnie had a bit of a rough day. Admittedly, that description doesn’t really narrow things down much, but I don’t remember the exact circumstances. She was probably frustrated or feeling overwhelmed. As we were sitting in bed, I was messing around on the computer, and she was looking at her phone (don’t judge. You can’t have a deep conversation every night). Anyway, I came across some youtube videos that had us both laughing our heads off. The only one I can remember specifically is the one at the top.

In the grand scheme of things, there’s probably not a lot of value in the massive number of ridiculous, mindless videos on the internet, but a good laugh was something we both needed. I think there’s a kind of beauty to the idea that even something silly and small can be just what someone needs.

This sort of thing translates very well into a good approach when we’re trying to offer comfort to those who are struggling. People often ask Bonnie and me what they can do, looking for some big (or small) way that they can change our lives for the better. While there have been a few instances where we needed a big thing (moving comes to mind), the truth is that there usually isn’t anything they can do to actually change our situation. Most of the time that will be the case. Instead, the things that I remember and the things that mean a lot to me are usually the small things:

– People saying hi to me – not the “pity-eyes” sort of greeting, but a real friendly hello.

– People who talk about things other than cancer, college and kids. (I considered spelling all three of those with a “k” so they would underscore the alliteration, but that would make an unfortunate acronym).

– Basically anyone who acts like I’m still a normal person and not a project.

In essence, I’m finding that small gestures make a difference. As I was writing this, I remembered a story that President Eyring told in the Oct. 2010 general conference:

Once I was at the hospital bedside of my father as he seemed near death. I heard a commotion among the nurses in the hallway. Suddenly, President Spencer W. Kimball walked into the room and sat in a chair on the opposite side of the bed from me. I thought to myself, “Now here is my chance to watch and listen to a master at going to those in pain and suffering.”

President Kimball said a few words of greeting, asked my father if he had received a priesthood blessing, and then, when Dad said that he had, the prophet sat back in his chair.

I waited for a demonstration of the comforting skills I felt I lacked and so much needed. After perhaps five minutes of watching the two of them simply smiling silently at each other, I saw President Kimball rise and say, “Henry, I think I’ll go before we tire you.”

“I thought I had missed the lesson, but it came later. In a quiet moment with Dad after he recovered enough to go home, our conversation turned to the visit by President Kimball. Dad said quietly, “Of all the visits I had, that visit I had from him lifted my spirits the most.”

I think I finally get this story. President Kimball didn’t come in trying to say the right thing. He wasn’t there with some idea about the perfect thing to say to buoy up Henry’s spirit and faith. He also didn’t make him give detailed explanations of his diagnosis and condition. He just came as a friend to see someone that he cared about.

Update on Bonnie

george-michael gif

I feel you, George Michael.

It’s been a long, stressful day. Bonnie wasn’t feeling very good last night, so she was up a lot. That translated into oversleeping for her doctor’s appointment. It’s always nice to start the day out right.

More importantly, it’s looking like her current course of treatment just isn’t managing the symptoms the way that we would like. Bonnie has been falling down a lot and her balance is really impaired, so we’re going to be switching to something more aggressive. At this point, Bonnie’s condition makes her such an outlier that there’s not really a proscribed course of treatment, so it feels a little bit like both we and our doctor are shooting in the dark.

We’re going to try a really high dose of the medicine that she’s on, which will involve some pretty serious time in the hospital. So that’s not going to be fun for anyone.

We also had a visit to the physical therapist, who basically said that there’s not much that he can do to fix things (not really surprising), but he gave us some strengthening exercises for Bonnie to do.

When I write it all down, it doesn’t sound like that much, but I just feel totally mentally spent. It’s the cancer anxiety. You just sit around waiting constantly for something to go wrong. It’s like your brain is stretched out too thin, or you’ve got this constant feeling of falling but you never hit the ground. Then when you get more bad news you just don’t have the energy to process it because of all the energy you spend keeping it together on a normal day.

That’s probably enough whining from me. I still have a great little family, and I’m sitting here watching a little show with L and R while I type this, so the day is not all bad. Even when things go poorly, it’s always nice to get a chance to sit around with the kids at the end of the day. But if you see my lying on the floor, you’ll know why.

Nauvoo Thoughts 1

Allison familyphotos 0614 050It’s been about a week since we visited Nauvoo, and I’ve been thinking a lot about it. Our whole trip had nice weather, except for the day we decided to spend in Nauvoo. It rained. Lots. We took a covered wagon ride around the town, and even though it was covered, everyone still had to wrap up in several layers of blankets in order to stay dry and warm. While there were dozens of old houses and other attractions to visit, the one thing that I really felt excited about was the brass band’s hymn concert.

Before each hymn, a band member would stand up and give a little information about the hymn and a short testimony.We haven’t had too many Sundays since Bonnie got her most recent diagnosis, so I wasn’t really prepared for how much the hymns would affect me. The hymns talk about faith and hope, but those virtues are often described in the context of exercising them while experiencing loss, pain, and death.

Praise to the Man is all about the martyrdom of Joseph Smith.
How Firm a Foundation talks about God being with us in our trials. Sickness, fear, fiery trials, poverty–all of those and more get a mention in this song.
Lead, Kindly Light takes us through encircling darkness so thick that you can’t even see one step ahead.
Be Still My Soul describes all of us as burdened with a cross, which is not immediately lifted. The advice given is to have patience and bear your cross along thorny ways.
Brightly Beams our Father’s Mercy talks about people stuck in sin and being lost and alone in life’s storms.
Come, Come, Ye Saints is especially poignant in Nauvoo when it talks about dying “before our journey’s through” because of all the people who lost their lives before making it to Utah.

Listening to all the hymns, I was struck with a sense of how much the composers understood life. These hymns deal with difficult subjects, and they’re not meant to be simple platitudes or lip service to faith and endurance. The people who wrote these words understood. Bonnie’s cancer is an overwhelming, heart-breaking, gut-wrenching, soul-crushing experience.

But (and here’s the important part) this experience won’t break my little family if we don’t let it, and the way to get through is to cling to God. I find comfort in one of the other hymns that the band played: If You Could Hie to Kolob. Pain, sorrow, and heartache-even death-are all temporary things. The things that really matter are eternal.

There is no end to virtue;
There is no end to might;
There is no end to wisdom;
There is no end to light.

There is no end to union;
There is no end to youth;
There is no end to priesthood;
There is no end to truth.

There is no end to glory;
There is no end to love;
There is not end to being;
There is no death above.

Thankful Thursday 4 – Silver Linings Edition

W-23We finally arrived in Utah after our long road trip. We had a great time, and I’ve got a few more posts coming about that in the next few days. However, it’s Thursday, so it’s time to talk about gratitude. There have obviously been a lot of challenges this month, but I’ve been surprised at how many things have worked out well. For every bad thing, there are a lot of reasons why it was the best possible time for that bad thing.

Bonnie was talking to her Mom yesterday about how well so many things have worked out. For instance, Clark and Wayne were already planning a road trip through Cleveland, so we were able to meet up with them and spend some time in Kirtland and Nauvoo.

Most people expected Laura to go on a French-speaking mission, since she’s studied it a lot. Instead, she got called to Taiwan, which means that she spent twelve weeks in the MTC instead of eight. In addition, she put in her papers in December, but didn’t leave until April. All of these things meant that the timing of her mission coincided with Bonnie getting sick. Because of that, she can take a break for a transfer to see Bonnie without the massive inconvenience of travelling from Taiwan to Utah.

A particularly noticeable bad/good thing happened last night: our car failed catastrophically. Go 2014! Obviously that’s bad, but the timing of the failure couldn’t be better. We drove that thing almost 3000 miles in the last two weeks. Then when we got here, we drove it back to Provo and then up to Pleasant Grove. It did (relatively) fine for all of that.

Last night, however, we drove it a distance of maybe two miles to see Gran. When we pulled into the parking lot, I heard a sort of hissing/fizzing sound. We looked under the car and green fluid was spraying everywhere, while smoke leaked out from under the hood. I’m not sure what’s wrong yet, but it couldn’t have happened in a better place. Gran has a van that she doesn’t use a lot, so we were able to move all the stuff from our car to hers and make it back home.

Like I said, this is the silver linings edition of Thankful Thursday. Just moment ago I typed out this sentence, “Of course, I would be happier if all these things hadn’t happened.”

As soon as I typed it out, I stopped. In reality, I don’t know that that’s true. I’m not glad that Bonnie is sick, and I’m not glad that our car broke down, but I feel like these little things illustrate what seems to be a common theme for Bonnie and me these last two years: even when things go wrong, they still work out. You can still be happy in the middle of all of that. I’m not even sure if the happiness comes in spite of or because of the challenges.

Think about it for a second. What really makes you happy?

  • Feeling connected to others
  • Sensing God in your life
  • Feeling like you matter
  • Family
  • Friends
  • A purpose
  • Security

You can probably add a few things of your own to the list, but the truth is that a major catastrophe like an illness in the family can improve most of those things (with the exception of security). I’m not saying that Bonnie getting sick is some awesome thing that has made me much happier, but it hasn’t destroyed my happiness like you might expect. More than anything it’s given me perspective on life and what I want to do with it. I’m grateful for that most of all.

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.

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.