30 January 2018

Bethany

Sooner or later, most people I meet and get into conversation with ask me if I have any siblings. I tell them I have a brother.

"Oh, that's nice. Is he older or younger than you?"

I tell them he is older than me by almost twelve years.

They say, "Wow, that's quite a gap! You must have been like an only child growing up."

I usually don't tell them I had a sister. I see no reason to do so. It would be a needless downer in what's usually an upbeat and positive conversation. Once or twice I've accidentally dropped a casual reference to bossy big sisters, or to wearing hand-me-downs. And then they look at me, puzzled, and ask me what would I know about bossy sisters, or how could I have worn hand-me-downs if I only had a brother?

Well, I would like to set the record straight today, two days after what would have been her thirty-seventh birthday, that I did indeed have a sister. Her name was Bethany Grace. She died at age 26 of acute lymphoblastic leukemia, the last in a long succession of debilitating illnesses.

The irony was that Beth had always been mortally afraid of dying young, and she took all the measures she possibly could that, in her mind, mitigated that risk. She refused to eat sugar. She wouldn't eat meat or dairy, because the body has difficulty digesting them. She wouldn't use perfume or burn candles, because they contained harmful artificial fragrances. She didn't want to be around microwaves and radio towers, because of the invisible waves that could interfere with brain activity. She was positively terrified of boxed cereal, because the plastic packaging was treated with a chemical preservative that had been linked in some studies to nervous system disorders.

And on and on it went. I think all of her many phobias were at least partially driven by the fact that she lived in constant pain, and also in the hope that her diligent avoidance of certain things might bring relief, somehow.

Her other greatest fear was people.

Not that she was a social recluse or anything like that. In fact she was much more extroverted than either Jon or myself, and was also quite generous. She filled a whole bunch of Operation Christmas Child shoeboxes every year and volunteered at the homeschool co-op and knitted blankets for new babies in the church, among other things. The strange part of it was, she was never happy while doing any of this. Instead she was constantly filled with fear, obligation, and guilt, sometimes to the point of hysteria.

She was always frustrated when the words and actions and reactions of other people weren't exactly what she thought they should be (which, of course, they hardly ever were). She also fretted constantly about what others might be thinking of her: Were they offended by what she said? Did they look at her that way because they were angry, or were they trying to make her angry? Did they make that comment just to annoy her? Were they judging her for the way she looked? Would they like this gift that she got for them, or would they brush it off? But what would they think if she didn't give them anything at all? Any grievance, either real or imagined, was a cause for stress, irritation, and worry that quickly descended into paranoia and panic attacks fueled by utterly irrational thinking.

Of course, she feared God most of all, and not in the good way. In her mind, God was a heartless taskmaster, always demanding more, never satisfied with anything. Everything bad that happened to her was His punishment. This was an unfortunate perspective indeed, because plenty of bad things happened -- from Lyme disease that was misdiagnosed for over a decade, to severe anxiety and psychotic symptoms, to -- finally -- cancer.

On spring break my freshman year of college, while my classmates were spending time at the beach or on missions trips, I was sitting with Beth in the hospital while she went through her first rounds of chemo. On one of those days, she told me she couldn't stop thinking about the verse in Proverbs that says: "A broken spirit dries the bones" (17:22). Then she said: "I've been a miserable person my whole life, and now this verse has literally come true for me." She said "literally" because leukemia, while being a blood cancer, gets its start from affected bone marrow. It is, in a very real sense, a sickness of the bones.

That statement gave me pause. I wasn't ready to wholeheartedly concur with that idea, that her cancer was the direct result of her unhappiness -- I simply couldn't say for sure. None of us could. Nevertheless, in her words, I heard a wake-up call: Don't give in to misery. Be happy as much as you can, even when it feels like the odds are completely against you. Enjoy good things. Assume the best about others, and most importantly, about God.

The biggest irony of all was that Beth started living (and actually enjoying) her life once it was determined that she had less than six months left. It was almost like she had decided that she might as well start living, because now, she had nothing left to lose.

By then it was summer, and I was home from school on my long break. I did the usual fun summertime stuff and she joined me on almost all of it, as much as her pain levels would allow. We went swimming in the river on hot days. We watched the stars at night. We would work in the garden together or go for walks in the woods or sit in the grass and look for four leaf clovers without her freaking out about getting dirty or getting tick bites or a thousand other what-ifs. She relaxed most of her strict rules about what she wouldn't eat: Whenever I made coffee or whipped up a milkshake or scooped out a bowl of ice cream, I'd make two: one for me and one for her. That was a completely new thing! When she was first diagnosed with cancer, I prayed for a miracle -- and seeing her eating ice cream, I knew I had gotten it. It was just different than the one I'd asked for.

Best of all, she finally seemed to be at peace with others and with God. Of course, the two of us still had our spats about various ills right to the bitter end -- I guess some of that's to be expected between sisters -- but mostly, she was able to disentangle herself from the suspicion that the whole world was out to get her. For those last few months, she actually seemed to be enjoying herself. I was happy for her, but the happiness was shadowed with regret for the fact that she wasn't ready to live her life until it was almost over.

This is the real reason why I'm not a fan of the "live like it was your last day" advice, having been in the close company of someone who actually is in their last days. Especially someone as young as Beth, who, had she been dealt a different hand and perhaps made a few different choices, could have had a lot going for her. "Live like it was your last day" is often touted as the way to avoid regrets in life, but I think it can leave you with more regrets if you're not careful: Once you reach the end of your time, you might very well realize that you haven't actually been living at all; you've just been anticipating death. (They aren't the same thing, needless to say.)

I think we should take the "last day" part out of the equation. Whatever gifts, whatever people, whatever time God has given you, you should enjoy and make the most of because those gifts are a blessing and because you have them right now; not because you're thinking about the day you'll lose them. That day will come eventually, but believe me, you have much more to lose in the meantime if you live with death as your focus. Or, even worse, if you wait until you actually are dying before you appreciate those gifts, those people, those days and hours and years.

There's a better way, I think, and it's found in that verse that says "Let all that you do be done in love." Love. That's what makes anything worth doing. That's, you know, actually good advice to follow. Not because you'll die someday, but because you're alive today.

Don't live like it was your last day. Just live.

2 comments:

  1. I have been waiting to hear this story. Thank you for sharing such beautiful and wise insight on living, and loving well.

    ReplyDelete