One year ago

My life changed one year ago today. I just didn’t recognize it at the time.

On April 24, 2017, I received a call from the ER nurse at the hospital in my hometown telling me that my dad had arrived at their doors weak and out of breath. The diagnosis came shortly after: Advanced Congestive Heart Failure.

Mom, meanwhile, was en route to the local nursing home. Following one too many falls, she needed intensive physical therapy to attempt to regain strength in her legs.

One year later, Dad is gone. Mom remains in the nursing home, confined most of the time to a wheelchair.

For eight months following that crazy day in April 2017, I lived primarily in Illinois– caring for Dad as he underwent a series of treatments and procedures and visiting Mom at the nursing home and keeping a constant check on her care, bills, appointments, and so on.

Since Dad’s passing on January 17, I’ve adopted a new role. Several roles, actually. Primary caretaker of my mom, of the farm, of the many everyday details that enable my family to continue on. Fortunately, I had eight months of practice to know what to do. Still, I feel lost much of the time. And sad that the bond Dad and I strengthened during those months together is now a memory.

I spend a lot of time on the road between Alabama and Illinois. Sometimes, I fly, but more often, I drive. using the time in the car to reflect on things.

On Monday of next week, I’ll hand in my semester grades. Tuesday, I’ll hit the road to return to Illinois. To see my mom. To check on the farm. And to figure out what comes next.

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A new emotion

On January 17, one week before his 82nd birthday, Dad passed away from complications during a cardiac procedure. As deeply as I’ve felt these past three weeks, I’ve waited until now to try to put those feelings into words.

I have done some writing in the aftermath of losing Dad, but mostly for others . . .

An obituary for the local papers that gave tribute to Dad’s life, his accomplishments and passions.

Memories I jotted down to share during the memorial mass.

Class assignments and correspondence as I’ve attempted to maintain contact with my students, despite the numbness I experienced when I stepped back into the classroom.

The days move very slowly since losing Dad. Mornings and evenings are the hardest, I find.

I wake up and begin to remember that everything has changed–Dad is no longer here on earth, even though he often occupies my dreams. He won’t be calling out to see what’s for breakfast when I’m back at the farmhouse or phoning me in Birmingham to let me know that he sold some bushels of grain and wants to show me a new piece of ground that’s for sale when I head back to Illinois.

At night, I’m fine as I read student papers or watch a movie with Bruce and the girls. Then, the papers are put away and everyone in the house goes to bed. I sit alone and think, and remember, and mourn.

Friends who have lost a parent tell me that the feeling is indescribable. I think they’re right.

Grief is a new emotion, one that’s different than depression. When I think of Dad, I feel immense gratitude for the time that we spent together and all of the qualities that made him who he was–his wit, curiosity, strength, compassion, love.

Depression is a feeling of hopelessness and emptiness. Grief–if I can sufficiently describe what I’m feeling–is another kind of loss. It’s an absence that makes the ones left behind wish they had just one more day with someone who changed the way they experienced the world. My memories of Dad bring me a sense of hopefulness in this life and in what lies beyond.

 

 

 

A significant loss in the cancer community

On Christmas Eve, the cancer community lost a remarkable physician, researcher and caring human being, Dr. Jimmie Holland: https://www.nytimes.com/2018/01/04/obituaries/jimmie-holland-who-cared-for-the-cancer-patients-mind-dies-at-89.html?emc=edit_th_20180107&nl=todaysheadlines&nlid=44005038

I met Jimmie (and her husband, James) a few years ago through my participation in the American Association for Cancer Research Scientist-Survivor Program. She was a kind and compassionate woman who was one of the first to notice in the 1970s that oncologists and cancer researchers were striving to understand the characteristics of the disease itself but not the emotional strain that a cancer diagnosis brings.  These days, the notion that patients would be treated without considering their psychological condition–namely, their fears, anxieties and sense of extreme loss–is unfathomable. We have people like Jimmie to thank for the shift.

When I was diagnosed with breast cancer for the first time in 1993, I truly couldn’t believe the emotional rollercoaster that I found myself riding. While all mortal beings know, theoretically, that our time on this earth will come to an end, the thought comes barreling home when diagnosed with a potentially fatal disease. Especially at 29.

Those emotions still dwell in my gut, and they arise whenever I find myself reeling back into a cancer state of mind.

Extreme loneliness, the sense that I, alone, had been thrown into a horrifying experience.

Fear of the new reality, physically and psychologically, as I began an arduous treatment regimen.

Uncertainty about the future–what kind of life lay ahead, and if briefer than anticipated, how I might find peace and fulfillment in the time remaining.

Jimmie Holland understood those feelings and devoted her career to giving them voice. She was in all ways an advocate for patients and a beacon of honesty for physicians who needed to hear that treating cancer requires acknowledging the human component.

 

 

What doctors should ignore

A fascinating op-ed appeared in yesterday’s New York Times: https://www.nytimes.com/2017/12/08/opinion/sunday/should-medicine-discard-race.html?emc=edit_th_20171210&nl=todaysheadlines&nlid=44005038

The author, Moises Velasquez-Manoff, argues that tying the propensity for certain diseases and health care behaviors primarily to racial identity is problematic. An example is sickle cell anemia, long hailed as a “Black person’s disease.” making exceptions to the rule–i.e., “White” patients with the disease–difficult to explain. The reason for the confusion, as suggested in the article, is that there are far too many unknowns and misconceptions in our broad understanding of race.

Several years ago, I listened to a featured speaker at the Cancer Health Disparities Conference sponsored by the American Association for Cancer Research. He made the argument that beneath just about every claim of health disparity tied to race was an insufficiently-explored inequity of another sort–economics, housing or diet, for example. In effect, the speaker (whose name unfortunately escapes me) proposed that researchers think carefully before focusing on race in medical research and health care rather than the socioeconomic factors that might be more influential on the health of a particular individual or population.

I have to wonder where this argument will lead as more of us investigate our genetic histories and discover that we may not be who we think we are.

Another generation

My op-ed about farm succession is in today’s LA Times: http://www.latimes.com/opinion/op-ed/la-oe-ryan-family-farm-20171119-story.html

These many months of driving between Alabama and Illinois to assist my parents and learn what I can about farming for another generation have been difficult, but also a blessing. I’ve learned more about my family–both the one that raised me and my husband and daughters–than I thought possible.

The print version of the essay, by the way, should feature an aerial view of our family farm!

“I used to be cool.”

Today, I was following an SUV on I-65 when my eyes were drawn to a bumper sticker that read “I used to be cool.” The message was one of many on the tail end of the vehicle, others referring to kids’ sports teams and school allegiances, political slogans, tourist destinations.

The coolness claim made me laugh. I frequently joke with my girls, now 19 and 16 years of age, that I used to be pretty cool–and maybe still am. Their typical response? “Oh, Mommy. No.”

When I first began teaching college courses, I was just a few years older than my students. Now, I am several decades older than they, sometimes older than their parents. It’s a weird feeling when common points of reference that I once shared with my students can no longer be assumed or when language choices present a divide in how we think about and talk about issues of the day.

As the traffic slowed and I continued staring at the bumper sticker, I started thinking that maybe moms like the one in front of me actually become cooler as they/we age.  After all, with age comes experience and a more complicated perspective on the world.

That’s pretty cool.

 

Muddling through mania

Joe called my parents’ house last night. Dad was already asleep, so I picked up.

“Mary Ann?” the man on the other end of the line asked.

“No, this is her daughter,” I replied.

Within seconds, my brother had been handed the phone and began a 20-minute rant. He was manic, speaking at an extremely rapid pace, one thought blending into another:

“I’m in Colorado Springs, at a concert, he’s about ready to begin another set, I love you, how are the kids, are Mom and Dad ok, remember when we were kids, I haven’t touched drugs since 2014, I love you, September 16 I had a major heart attack, thought I was gonna die, I’m sorry everybody is disappointed in me, I never meant to do anything wrong, I love you, I never really hurt anybody, I hope I see Mom and Dad again before I die, . . . ”

The conversation went on and on, and I found myself attempting anything to end it.

At least half of what Joe uttered was untrue. Some was complete nonsense. The last bit was based loosely in reality.

As I’ve written before, my brother is mentally ill, bipolar with signs of schizophrenia. But he’s also a long-time addict, liar and abuser. It’s not easy to reconcile these many sides of Joe, or to forgive and forget.

I’ve spent 53 years trying to survive as his sister. I’m tired. I imagine Joe is tired, too.