Wednesday, November 5, 2014
On New Year's Day 2014, Brittany Maynard received a staggering diagnosis. 29 and recently married, she now contemplated brain cancer. Surgery proved ineffective, and by April doctors told her the tumor had grown into a grade 4 glioblastoma, an aggressive cancer that would likely claim her life within six months. Brittany and her family researched the options, none of them pretty. Treatment could prolong her life but not save it, and the side effects of the treatments themselves would drastically reduce the quality of what little time she had left. The tumor already promised a terrifying decline. Adding side effects of radiation and chemotherapy seemed unpalatable.
Have watched a loved one die from a grade 4 glioblastoma, I claim some experience with the indignity of the death the disease inflicts. I have watched a once handsome and athletic body grow puffy and weak with steroids. I have wept with frustration as the honor student struggled to pass classes that once came easily to him and finally struggled even to remember how to tie his tie. I held his hand as he recovered from yet another seizure, and I injected morphine to control the awful pain. I fought with insurance companies, propped a bowl under his chin while he threw up blood, and talked long into the night with him about what it might feel like to leave this life. In the end, I changed the diaper of a man who no longer recognized me. No one deserves to die that way.
While Brittany struggled with her own illness, another young woman also contemplated a diagnosis of terminal brain cancer. Lauren Hill, a high school senior and standout basketball player, had just signed on to play basketball for Mount Saint Joseph University in Cincinnati when she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare form of brain cancer. 90% of children with DIPG die within 18 months of diagnosis. Like a glioblastoma, this cancer offers no pity to its victims.
Brittany and Lauren both took their fight to the next level, although they chose very different paths. Brittany began to research "death with dignity," or physician-assisted suicide, hoping to die on her own terms and spare her family the pain of watching her decline. She lived her last months deliberately, cherishing time with loved ones and building memories. At the same time, she joined forces with Compassion & Choices, an end-of-life nonprofit advocacy organization, to share her story, one that has sparked a national debate. She allowed herself to be vilified by those who disagreed with her choice, feeling that her cause was worth the cost. She ended her life on November 1, surrounded by love and still in control.
The day after Brittany's death, Lauren Hill played her first college basketball game. Mount Saint Joseph games usually draw a crowd of 50 people. For this game, 10,000 tickets sold out in 30 minutes. Lauren had chosen to spend her final months raising awareness of DIPG, in the hopes that increased research could help those who come after her, children and families who need a voice. For the past several months, she practiced with her teammates and worked tirelessly for the cause that hit so close to home, all while undergoing painful treatments and suffering the debilitating effects of her disease. In the opening seconds of the game, she scored the first basket of the NCAA season, and the crowd erupted into cheers. Doctors say Lauren has weeks left to live.
I have thought a great deal this week about these two women. I find Lauren's story incredibly inspiring, much moreso than Brittany's, if I have to be honest about it. Fighting to the end always makes for a better story, especially when that fight includes two basketball teams and 10,000 fans coming together to make a dream come true for a girl who has decided to use her last weeks to help make possible the dreams of other children. One would have to be heartless, indeed, to find fault with Lauren and her end-of-life choices.
At the same time, I cannot quite bring myself to condemn Brittany. While I have watched a loved one suffer the agony of death, I have not personally felt the pain, the nausea, the terror, the disorientation, the loss of mental and emotional competence that comes with an illness such as hers. After 9/11 I told myself I probably would have jumped from the tower rather than allow myself to suffer death by fire. And I tell my husband that if I ever face severe dementia, I want to die alone in a nursing home rather than have my family see me in such a decline (although I have a feeling I would change my mind if that scenario ever became my reality). Is that really any different than Brittany taking a lethal dose of barbiturates only weeks or even days before the cancer would have claimed her life anyway?
I know so little about death. But one truth I have learned is that regardless of how many loved ones or journalists surround us, we each face the end privately, in the quiet moments of faith or fear, in the contemplation of our lives behind us and the possibilities ahead, or simply in the day to day struggle with illness and pain. Most of us get no rehearsal for our meeting with death, so it's game on when he turns his attention to us. We cannot with any certainty know how we will react or what path we will take, so perhaps we should spend a little less time condemning the end-of-life choices of others and a little more time following Lauren's example by living with dignity.
When asked what her daughter's epitaph might say, Lisa Hill responded with, "She never gave up, not even for a moment. She never strayed from her goals. She lived and loved with passion and desire." That is how one lives with dignity. Death will take care of itself.
Monday, August 11, 2014
Somehow, I failed to catch the sewing bug myself, and without the whir of that ancient Singer, summertime meanders along at its own pace, leaving me rather shocked to find myself at the end of the ride, not quite prepared for autumn and falling far short of the lofty goals I set for myself ten weeks ago. The biography I started writing in 2011 remains just short of complete. My blog suffers from neglect. I half-read several books and completed none of them. I never ran that 10K I intended to run this summer.
However, while the writing fell by the wayside (again), we built good memories. I watched while Son #1 married a wonderful woman, and I smiled at the delight of Son #3 as he hiked with me along the edge of a mountainside. I ran dozens of miles and biked hundreds more, clearing my head and finding my endurance. I dated my husband and discovered downtown Springfield with my daughter. I even enjoyed the state fair for once, despite the rain that soaked us while we screamed and laughed on the rides.
The next few days will find me wandering those school supply aisles with a list in my hand and an excited third grader by my side. Perhaps on my way out of the store I will casually drop my list of summer goals in the garbage can and start fresh for autumn, buoyed up by good memories and the warmth of summer on the wane.
Wednesday, May 14, 2014
When I left the Vermont hills for Midwestern cornfields, I brought the tradition with me and have sporadically lassoed various friends into my annual escape. This year, Mothers’ Day Saturday dawned brilliantly sunny and pleasantly warm. Four of us passed the two-hour drive to St. Louis switching comfortably between the trivial and the profound with ease born of long friendship and shared experience.
|"The Washerwomen of Breton Coast," painting by Jules Breton|
Leaving the stately columns of SLAM, we headed to 39th Street and Sweet Art, a neighborhood café, bakeshop and art studio owned by baker Reine Bayoc and her artist husband Cbabi Bayoc. While indulging in vegan eats and not quite so vegan but oh so amazing pastries, we discovered Cbabi’s “365 Days with Dad,” a project of 365 paintings celebrating black fatherhood. His paintings are worlds apart from Jules Breton but equally powerful in their own sphere.
Still munching vegan brownies, salted caramel bars and hummingbird cake, we made our way downtown to a fantastic production of Joseph and the Amazing Technicolor Dreamcoat. Joseph and his brothers delivered, as did the opulent Fox Theater.
Once back in the sunshine, we wandered for a time, drunk on summery air and the wonder of a few hours without schedules and demands. We stopped first at St. Francis Xavier College Church, pausing to meditate in the hush of intricate stained glass and worshippers waiting for their turn at confession. Around the corner, on the campus of Saint Louis University, we found a delightful collection of sculptures, a perfect picnic spot tucked among perennials, and a couple of stately stone lions watching over the Moolah Temple.
We rounded out our adventure under the tutelage of Mai Truong, the chatty founder of the OR Smoothie & Café in the Central West End. Sipping power smoothies and munching Vietnamese spring rolls, we reflected on a glorious day in the middle of lives that, for all of their twists and turns, have treated us remarkably well.
My grandfather loved the song "A Perfect Day," by Carrie Jacobs-Bond. "When you come to the end of a perfect day," she wrote, "and you sit alone with your thought, ...mem'ry has painted this perfect day with colors that never fade, and we find at the end of a perfect day the soul of a friend we've made." Ms. Jacobs-Bond wrote those lyrics 100 years ago after watching a magnificent sunset at the close of a glorious day spent motoring with friends. I think perhaps I know just what she was thinking that evening.
Friday, May 9, 2014
I belong to a church that claims to be the true church of Jesus Christ, restored by God Himself in modern times. This is a bold claim, to be sure, a sometimes unpopular claim in Christian circles. In a religious environment where the trend favors an “all paths lead to God” philosophy, the notion of a single path seems exclusive, restrictive.
Recently, I broke my usual rule of avoiding blogs that blast the Church of Jesus Christ of Latter-Day Saints (LDS). I find such blogs and the accompanying comments divisive, contentious and frankly painful to read. However, someone I respect posted a link to a blog, and I took the bait. At the end of the essay, I found a comment that has caused me to ponder. Presumably defending the LDS (or Mormon) faith, the commenter wrote the following:
“I think a very large problem people have is judging a religion by trying to determine if it is "true." It's just not what religion is about. Good inclusive and loving religion is about goodness, not about truth. It's easy to disprove any religion technically - or any other superstition. Rejecting Mormonism by finding it untrue is silly. Judge it for its goodness. No religion is "true." Religions vary a great deal in how good they are, and Mormonism is one of the very best.”
Religion isn’t about truth? Really? If religion isn’t about truth, then what, exactly, is the purpose of religion? I can join a club or a social movement if I need an organization to help me to do good, effect positive change in the world. But I want something more powerful than that. I want the power that comes with having faith in something absolutely unshakeable, something greater than the universe, something beyond human control. I want truth.
I realize, in my quest for truth, that I will have to sacrifice to obtain it. I may have to sacrifice the comfort of personal habit or public opinion. I expect to work and find myself pushed to my limits occasionally, because I have never had a truly amazing moment of clarity and beauty that came without sweat or tears. In fact, the LDS prophet Joseph Smith once taught that “a religion that does not require the sacrifice of all things never has the power sufficient to produce the faith necessary unto life and salvation.”
While Joseph Smith may not resonate with everyone, the concept that the worthwhile things of life require sacrifice certainly seems to resonate with people of all cultures and persuasions. Interestingly, as our modern culture moves away from organized religion, we seem to create our own sacrifices to replace those formerly imposed by the religions we shun. Record numbers of athletes run marathons and ultra marathons each year. Fitness enthusiasts from teenagers to grandmothers groan under the strain of a daily crossfit workout. We eat bitter kale and forego gluten and sugar and meat (which makes the WholeFoods skit by Studio C particularly hilarious). We sacrifice our families and our joy to devote most of our waking hours to our careers. We search and search and search…for truth, though we may phrase it differently.
So I will be bold and declare my search for absolute truth. I believe I have found the avenue (or perhaps the container) for that truth in the Church of Jesus Christ of Latter-Day Saints, not because the LDS church sets itself apart and closes its doors against the tenets of other faiths or the discoveries of science or academia, but precisely because the gospel encompasses and accepts all truth. The grandfather of LDS apostle Henry B. Eyring once told his son, “…in this church you don’t have to believe anything that isn’t true. You go over to the University of Arizona and learn everything you can, and whatever is true is part of the gospel.” I have always loved that quote and have let it inform my life.
Another concept that I find critical in my search for truth and God is the notion that truth comes to me when I act, whether that action involves serving others, enduring with grace or wrestling through to the solution of a spiritual conundrum. Eugene England, an LDS intellectual, once wrote an essay called “Why the Church is as True as the Gospel,” an essay that has proved pivotal for me in how I approach my religious life.
In the essay, Mr. England points out that “the (LDS) Church is as ‘true,’ as effective, as sure an instrument of salvation as the system of doctrines we call the gospel-and that that is so in good part because of the very flaws, human exasperations, and historical problems that occasionally give us all some anguish.” We all experience the frustrations of imperfect leaders, doctrines that may clash with our comfortable existence or with each other, or opportunities to serve with those who may drive us to the point of insanity with their habits or prejudices. But as we seek divine guidance in working through these exasperations, and as we act rather than grumble (or even act while grumbling, sometimes), we eventually push through to astonishing vistas of truth that we could not have understood without the struggle. We come to know Jesus Christ by walking in His footsteps for a time.
Yes, religion should be loving and inclusive, should inspire goodness in the community it serves. And if a religion is to truly save souls and offer the riches of eternity, it should also be true.
Wednesday, February 19, 2014
|Go ahead, ask me when I'm due. I dare you!|
Having been a pregnant woman, a grieving spouse, a working mom, a stay at home mom, and a hundred other “someones,” I thought I should probably take a look at some of the utterances that any thinking person should have known never to say to me at that particular period of my life.
Apparently, I should have taken great offense as a working mother if anyone told me that I looked exhausted. Ooh, well. The fact of the matter is that I was exhausted. My one-year old seemed to catch every childhood illness that breathed its way through daycare. I travelled frequently. Management duties kept me up at night when the baby did not. Yep, I had days when my eyes wanted nothing more than to close for just a few seconds of quiet bliss. You would have been an idiot not to notice, and it’s OK that you mentioned it. I found myself even more exhausted as a stay at home mom, and it’s OK that you noticed then, as well. The working mother blogger supported her plea for inoffensive comments with her assertion that “I am no different than anyone else.” All right, sweetie, I’ll take you at your word and stop tip-toeing around you.
Hundreds of sites list terrible things never to say to a pregnant woman. Well yes, let’s walk right into that mine field. Give a woman an overload of hormones and a few inches around the tummy and thighs (and arms and cheeks and ankles) and there really is no way to be sure you will say the right thing. Most of us cry and huff and puff and eventually get over the questions and advice once the hormones have subsided. One blog author differentiated between the childless person who offends with the comment “get all the sleep you can now” and the new parent who appropriately commiserates with the very same comment. Hmm…what if that childless person deals with infertility and is simply trying her best to relate to you in a condition she will never have, no matter how much she wants a child? I am quite certain that one of those 10 Things You Should Never Say to a Person Who Can’t Conceive runs along the lines of “You wouldn’t understand because you have never had a child.”
As a 20-something widow, I appreciated the fact that a select group of people actually could empathize with my situation and knew instinctively what to say. At the same time, I appreciated all of the bumbling attempts to connect with me by friends and strangers who knew they could never say the right thing but wanted to open their mouth in support anyway. Thank you for not letting your fear of casting offense keep you from walking across the room to speak to me. I know how long that walk can be, how you rehearse in your mind what you will say to the wounded woman who feels a pain you may never experience.
One snarky blogger ended her post with a statement that brought her a little redemption in my eyes. “The questions and words should not be filled with judgment but with support.” Yes, yes! Exactly. If you want to be helpful, tell me what I should say in support instead of automatically assuming I mean to be judgmental. I don’t (well, most of the time, anyway). Generally, I genuinely want to connect with those around me who deal with addictions, depression, stress, illness and a host of other challenges that life throws at all of us. I try my best. I fail a lot. And I will continue to believe that freezing in silent fear of saying the wrong thing is generally much worse than reaching out my hand in love and trying my best to connect with another human being.
Friday, December 27, 2013
|The Family, August 2013|
January marked our 19th wedding anniversary. That means, of course, that in just a couple of weeks we will celebrate 20 years of marital bliss. Once upon a time, we planned to celebrate our 20th in Scotland or Italy. As the milestone drew closer, we scaled the plan back to a return to Key West (where we celebrated our 10th). Now, with the day fast approaching, I'm thinking we'll maybe go out to dinner and catch some live music downtown. Reality has a way of catching up with us!
Central Illinois Jazz Festival in Decatur, an event we will most certainly make an annual tradition. Then we sent Alec off to Logan, Utah for the out-of-staters weekend at Utah State University. After a weekend of college life and snowboarding, his senioritis really kicked into gear!
March brought spring break for the kiddos, which began with our one real snowstorm of the year and ended with a wonderful family getaway to St. Louis. We built a magical snow castle, cavorted with butterflies at the Butterfly House and crawled through endless tunnels at the City Museum.
April flew past, with May and the end of the school year fast on its heels. Alec and Juliana celebrated the end of early morning seminary, while Jared and Kristina left 7th and 1st grade in the dust. Days later, Alec graduated from high school and wowed us with his senior piano recital. We love having a houseful of pianists!
July brought a flurry of house guests, culminating in Devin's long-anticipated return from his mission to San Antonio, Texas. Nothing stacks up to that first post-mission hug...even though we only got to keep him home for a week before Devin and Alec headed off to Logan and a semester as roommates at Utah State. Juliana flew West days later for an absolutely perfect bucket list hiking trip in the Wind Rivers. Brad took his turn in the Rockies in October when he joined the boys in the Salt Lake temple as Alec began preparing for his mission to Paris, France. (He's scheduled to enter the MTC on January 22, and he's beyond excited!)
In November, Brad and Jared officially ended the football season with a tournament in Missouri, and Brad thoroughly enjoyed what will probably be his last chance to coach one of his sons in football. Then we put the pads away and pulled out the basketballs for the next few months. Even Kristina gets into the action this time, playing on two teams.
Now here we are, basking in our Christmas goodie hangovers. Brad's parents and sister and our big boys all made it to the prairie for Christmas, and we are filling every bit of remaining space in the memory jar. For the first time in years I have enjoyed the Christmas season from beginning to end. For that, for family and for countless gifts from the Savior whose birth we have so enjoyed celebrating, I find myself filled to the brim with gratitude.
Monday, October 28, 2013
|And Sarah Laughed, by Abel Pann|
Do you remember the Old Testament account of Sarah and Abraham? Like most good Hebrew women, Sarah desired to raise children. To add strength to that perfectly righteous desire, God had promised Abraham that his posterity would be as the sands of the sea. And yet, not only did Sarah fail to conceive, but she had to watch her handmaid, Hagar, deliver Abraham's child in her place. For decades Sarah suffered the disappointment and shame of her childless condition, until at last she reached menopause. And then, one day she stood in the tent door listening while a holy man told Abraham, "Sarah thy wife shall have a son." What did Sarah do? She laughed to herself. The holy man promised the impossible; it was past time.
A couple of days before my recent fit of melancholy, I sat in the temple listening for the inspiration and answers that generally come to me there. The thought that tiptoed through my mind was a vision of Sarah and the gift of Isaac, a gift that came to her only after she had given up hope. Like Sarah, I had for decades desired a particular blessing. It was a perfectly righteous desire and, like Sarah, I had mostly given up hope of receiving that blessing. Mostly, but not quite. Recent events had rekindled just a spark of my hope, and the reminder of Sarah fanned the flame.
Sadly, the evening brought a resounding "no," seemingly straight from Heaven, and the loss of a newly revived hope sent me spiraling downward. My heart cracked just enough to let the faith drain out and the melancholy rush in to take its place. My husband flew to Utah on a trip that now seemed pointless, while I wallowed back at home. But sunshine and exercise, friends and the memory of faith lifted me. I still doubted my own ability to recognize inspiration, but I decided I could live without the desired blessing. After all, I had lived without it for years already.
In the midst of the calm, the phone rang. Astonishingly, the resounding "no" had turned to a "yes." Only after it was impossible did the blessing arrive. The next day, some of the people I love best of all stood together in one of the places I love best. Back home, I smiled. God remembered Sarah, even though she laughed, just as God remembered Rachel and millions of other covenant women. And God remembered me. It feels good to be remembered. I'm humbled that I dared to think my Father would forget me.
It occurs to me that I have not, in fact, really told the rest of the story. After all, most of the telling belongs to other actors in the scene. Truth be told, I suspect that in the end this episode will prove to be just a small part of a tale that continues to unfold. But it is enough to remind me that my notions of possibility can hardly hem in the God of the Universe.