The Trouble with Hope and Fortune

As we tumble out of 2016 and into the big unknown of a new year that seems staged with all kinds of hazards, I find myself reflecting on two words that have gotten quite irritating to me: hope and fortune. 

"I hope for you much good fortune in 2017!" What a lovely sentiment, right? Or is it a mindless way to pat yourself on the back that you've provided some optimism and well wishes that sure-to-goodness will help when you actually have no idea what your friend or family member might need in terms of emotional support or companionship? 

Hope implies that the future has the capacity to fix the present. I "hope" things get better/easier/smoother/kinder.... In other words, whatever is happening right now clearly isn't okay, and won't or can't become okay until something changes. So this hope for change pits an uncomfortable present against odds for improvement that will somehow appear because "hope" is on the table for the next random deal.

When someone offers me "hope" that all will improve, I experience this as pressure to reassure the hopeful supporter that I'm actually okay and share his or her optimism. Meanwhile, inside I feel a new emptiness as another possible source of support has dropped away. This person is offering "hope" because he/she has no idea what to do or how to help. I'm on my own. 

I'm taking these odd feelings and perceptions out of my pockets and holding them up for scrutiny not because I want to be rude, ungrateful or hurtful, but because I see this as a learning moment. When I'm hurting deeply, and scared and unsure about what life is calling me to do, receiving someone's "hope" leaves me feeling extraordinarily lonely. How do I let this well-meaning person know that his/her hopes are being dashed because actually my situation isn't getting any easier or more comfortable? How do I ask this person for further support when all that high-end hope already got wasted? If I call with the next bad news, I have to start by disappointing: All your hope didn't work, sorry!?

I remember the first time I read a book by Pema Chodron, "When Things Fall Apart," and I was appalled at her suggestion that a healthy, workable attitude toward a difficult situation would require an element of hopelessness. I wanted to toss aside this Negative Nelly suggestion, but I tried to understand what she might mean. I garnered a nugget of understanding as I began to open to the possibility that being okay didn't actually require that problems get fixed. Thus began my bumpy journey toward "ending the war with reality" and finding ways to be okay even when I find myself in a predicament that really isn't okay at all. 

Being in the midst of all that is and finding an inner resource of well-being provides a certain security of peace in any given moment, whereas "hope" for an improved future doesn't secure any amount of peace right now and instead pushes it into an undependable future. Therefore, hopelessness can offer a foundation for inner peace whereas hope for change will nearly always keep peace out of reach.

So, now that I've established myself as an ungrateful wretch who can't even appreciate a friend whose trying to help with all that generous hopefulness.... I'll make a few suggestions of phrases that I'm going to work on offering instead of ambiguous "hope" when I see someone struggling through a difficult life event. I'm so grateful to people who have offered these phrases or something similar to me recently, and I firmly believe that we can boost our support networks by working on this type of communication. 

"Wow, you are facing some really difficult challenges right now. I'm impressed by your resilience."

"What you are going through right now would make anyone a little crazy. Can I meet you for coffee or happy hour? I'm available to hear whatever you need to say out loud."

"I remember when you helped me by doing (fill in the blank). Is there something I can offer you now that might help or just give you a boost?" 

"I see that you are hurting, and I'm sorry that this is so difficult."

"I'm impressed by your coping skills, but that doesn't mean this isn't super hard."

"I can't know what you are going through because we all live through our own unique challenges, but I know what it's like to be frustrated/hurt/scared, and I hope you can remember that you're not alone in your struggle."

"What would help you feel a little bit better right now? Can I help make that happen?"

"Thank you for being so open about your difficult challenge. It's helping me and other people see more clearly how to work with our own situations."

I promised at the top of this rant to also discuss my other semantic nemesis: fortune, or specifically, the prevalent use of the word "unfortunately."

This is a word that people use to precede any sentence that will end in bad news. Generally misfortune is an all-purpose excuse for not helping or pursuing a problem further. It's a conversation ender, a polite way to back out of a problem and put its entirety back into the lap of the person who probably came seeking an answer or something tangible that might help. 

No matter what is being asked, the answer that starts with "unfortunately" means that help won't be forthcoming. Why even listen to the rest of the sentence when it starts so unfortunately? This all-purpose "not my problem" moniker is especially popular among professionals who can't or won't be pursuing your interests beyond the current conversation. 

My disdain for this word has left me considering both ends of its uses in my own life. When I'm inclined to say it, I try to consider my own motivations. Am I blaming some nebulous force called "fortune" for my own lack of interest or availability? "Unfortunately I can't help you do that because blah blah blah...." What does "fortune" have to do with it? Perhaps the reality is that I don't have a certain skill, enough information or the time to contribute meaningfully to the problem. Maybe I just don't care. Generally, a more appropriate and honest response might start with the phrase "I'm sorry." 

"I'm sorry that I can't help. I don't know how."

"I'm sorry, but I don't have any time in my schedule right now to help you with that."

"I'm sorry, but this is outside my scope as your friend, doctor, teacher..."

At the receiving end of many, many sentences that begin "unfortunately," I'm learning how to hold people, especially professionals, accountable...

"So when you say that unfortunately you can't help, are you telling me that you are unable or unwilling to help?"

"What do you see as the problem?"

"What do you think I should do in this circumstance?"

"What are you able to offer me in terms of help or advice at this time?"

These phrases take "fortune" off the table and bring back a certain tangible element of what is happening and who has power to affect the circumstances. I've gotten quite bold in stating that "fortune" doesn't really have a role in the decision process; this forces a more honest discussion about responsibility and choice. 

When a friend or family member uses the word, it's helpful to consider that this person may be trying to politely back away from a trouble that he/she isn't prepared to work with. I've crossed boundaries with friends/family members in my attempts to find someone willing to hold space with me when my burdens feel too heavy to carry on my own. I'm trying to learn how to let people off the hook or apologize when I've offered too much information (TMI!) or "over-shared." Other people sometimes have too much on their own plates to help digest my own pot-luck of yuck. If I've over-shared with you, I humbly apologize! It's unfortunate, really (lol?)! 

If you've read this far into my odd little essay, I thank you for your interest and your time. Perhaps if a few of us catch ourselves in conversation using words out of habit and reset ourselves to speak with clearer intention, we can improve dialog in our families and communities. 

I hope you join my crusade!

Fortunately or unfortunately, this is the end of my rant.

Writing with my Dad

Exactly a week after my dad passed away, I find myself back home in Washington and looking for a way to preserve memories of the nearly two months I spent witnessing the end of his amazing life. I wrote a series of letters to friends and family to share our experiences via email and Facebook. We took a lot of pictures. Although using imperfect technology for this project (my father has to be chuckling at my efforts to use an android application on an iPad!), I'm posting the writings that I created during this special time and a few of the photographs that illustrated some favorite moments. My dad read many of these posts before he died. He was always my best editor and the most exuberant supporter of my writing. I thank him now for encouraging me always to write and for creating this blog for me.

About a week before Christmas, on a gray, quiet day, my dad pulled out a thick file of papers and said, "Daughter, I have a request for you this morning. I want you to write my obituary." He sat in his comfy chair by the window, and I sat across the room at a little table and typed. Now and then I would ask for clarification or remark with something like, "Wow! You did that?" Looking through his long list of achievements and awards, my memory slipped back to a very special evening in Portland, Oregon, in 2001, when he was to receive an award but couldn't be there for the banquet. I went in his place and walked to the podium to accept the placard. I was so proud to be a Jerri Niebaum! That award was from the Special Interest Group for University and College Computing Services (SIGUCCS).

I typed my dad's obituary on my iPad, just as I'm typing this to post on my blog now. My mind whirls back to school days, typing on a Commodore 64 to create term papers. My dad was always patient when I couldn't remember the convoluted commands that drove that early word processor, and he nearly always proofread my papers for me. Inevitably he found a typo or a syntax error that needed correcting, but he always found something to compliment too. "Nicely done, daughter," is a phrase I will always treasure. So I share our final writing collaboration, his obituary, and I couldn't be prouder to be my father's daughter and to wear his name in my own version, Jerri Niebaum Clark.

Eldon Jerome (Jerry) Niebaum died January 5, 2016, at home, where he had lived with Judy, his high-school sweetheart and wife of 54 years, since 1981.

Jerry, 76, retired from the University of Kansas in 2004 as Assistant Vice Provost for Information Services. His 23-year KU career spanned a time of enormous technological changes, and Jerry worked enthusiastically to keep the university community, the state of Kansas and the entire Midwest up-to-date. In 2002, the Kansas Department of Education awarded him its Kansas Leadership in Technology Award to recognize his work to bring Kansas online through KAN-ED, a statewide networking project he led for the Kansas Board of Regents. He had previously directed several projects funded by the National Science Foundation to connect schools and libraries throughout Kansas and the Midwest with electronic information resources. In 1993, he was principal investigator for an NSF grant that created the Kansas Research and Education Network (KanREN), and in 1997 he led the effort to win an NSF grant that created the Great Plains Network Consortium to support collaborative research and high speed data sharing among member universities in the Dakotas, Nebraska, Kansas, Oklahoma, Missouri and Arkansas. He served as executive director of the Great Plains Network in 2003-2004. Nationally, he's been recognized by EDUCAUSE, which honored him with its Excellence in Leadership in the Profession award in 2000, and the Special Interest Group for University and College Computing Services (SIGUCCS), which inducted him into its Hall of Fame at a conference in Portland, Oregon, in 2001. He led seminars and workshops for national conferences of EDUCOM, CAUSE, Association for Computing Machinery, SIGUCCS and others.

Jerry's interest in computing began during his undergraduate days working on KU's first computer, an IBM 650, in the late 1950s. Completing his education degree in 1961, he went on to earn a master's in mathematics at Northwestern University and a PhD in computer science at Iowa State University, where he worked from 1968 to 1981. Throughout his career, he's provided inspiration and encouragement to employees at all levels; during his illness, his email inbox was flooded with notes from colleagues thanking him for helping to launch and support their careers. After retiring, he led a weekly computer study group through KU's Endacott Society to help other retirees stay abreast of current technologies. He took great pleasure in showing elderly friends how to use Facebook, Go-Pro cameras and drones.

Born in Caldwell, Kansas, on September 11, 1939, Jerome (Romie, as his youngest friends called him) was interested in technology as soon as he saw glimmers of it from his decidedly low-tech hometown. At age 12, he drove a tractor all summer to save $250 to purchase a black-and-white 17-inch Admiral television--and a huge antenna--that was a first for Corbin, Kansas. Discovering only one fuzzy channel within range didn't discourage his enthusiasm, and he happily took the entire set apart and put it back together "to see how it worked." His parents, Herman and Grace Niebaum, both had ended their educations at young ages. His father, a mechanic, encouraged his son from a young age to focus on getting a good education. In his self-published memoir Jerry wrote, "He told me more than once, only half in jest, 'If you ever pick up a wrench I'll hit you with it!'"

Music has played throughout Jerry's life, and he and Judy sang for many years in the choir at the First United Methodist Church. Together, they performed in the Ballad of Black Jack at the Lawrence Arts Center and sang in mixed choral ensembles at Kansas City Music Hall and at Carnegie Hall. He served on the board of directors for the Lawrence Community Theatre, serving as president in 1989-90. In addition, he's served on the boards for Friends of the Lied, KU Friends of the Theatre, the Douglas County Historical Society and the Lawrence Sesquicentennial Commission. A longtime struggle with an autoimmune disorder led him to become active in the Vasculitis Foundation, serving as the Kansas City chapter leader for 10 years.

Jerry died of cancer after several weeks in hospice care at home. He is survived by his wife, Judy; his sister, Joann Nulik; his son, Richard, of Chicago, and daughter-in-law Laurie Weber; his daughter, Jerri Clark, of Vancouver, Wash., and son-in-law Matthew Clark; and grandchildren, Michelle Kuykendall, Calvin Clark, Avi Zephyra and Astrid Ariana.

Jerry will long be remembered for his loyalty and commitment to friends and causes, his energetic and positive outlook and his wry wit. He wrote poetry from his bedside and provided friends and family with email updates about his health. In one note, he couldn't resist a final line of light-hearted humor. "Thanks for all your get well wishes. Try to do better next time."

Fly Now, Daddy

This is the letter I sent on January 5, my 50th birthday.

Dear friends and family,

My dad passed away peacefully at home this afternoon just before 1 p.m. Mom and I were with him, and we had a very special experience. This morning I had received some special "Happy 50th Birthday" notes on a Facebook post, and I shared those with him and told him there were so many people thinking about him and sending love. I told him we would miss him but that we would be ok and that we would take good care of each other. I told him his grandson Calvin was thinking hard about him and that he should go pay Calvin a visit. Indeed, Calvin knew his grandfather had passed before he was informed.

My brother, Rich, and Dad had devised a plan that after he died Dad would visit as a red Cardinal at the feeder outside my parents' bedroom window. As he labored to breathe this afternoon, I spotted a cardinal at the feeder that was spending quite a long time at its meal. I said, "Daddy, it's ok to go. Fly now."

He took one more sweet, peaceful breath. Mom leaned her heart next to his, and felt his final  heart beats before they stopped. After a long quiet pause, I hugged my mom and said, "He did it. He did it perfectly."

His last days were sweet and just as he had written them. Yesterday, he and mom napped together in a nearly silent house. He was not in pain, nor agitated. He had needed very little medication to remain comfortable and was therefore able to listen and understand who was with him. His Godson, Brandon, called last evening on FaceTime and performed several lovely songs that he accompanied with his ukulele. "Today" was a longtime favorite of my parents' and I could almost hear Dad humming along inside his head. Brandon ended with a silly tune about a "song I wrote on the toilet." Ending with a joke was Jerome's style!

At bedtime, Judiet leaned in to kiss her Jeromeo good-night, and said what she always says, "Good night, my darling."

Although speaking had become difficult and he had said very little on that day, he whispered his answer, which is the answer he has always given. And they were the last words he spoke.

"Good night, my love."

A Sweet Family Christmas

On December 28, I sent the following email to a long list of family members and friends....

Happy New Year from Cedarwood Hills in Lawrence!

Thank you for calling, sending cards and electronic messages and simply generating energy of love, light and prayers to beam our way. We have received all of the above during this holiday.

My dad rallied for a beautiful and fun family Christmas, with guests from Washington, Illinois and Texas. A highlight was gathering on the front lawn to fly drones. Dad gazed up in obvious delight, guiding his Christmas toy to hover, swoop and glide above the treetops. He laughed out loud with the rest of us when the drone snagged on tall branches 30-feet up. His great-nephew Forrest scrambled up the tree and, assisted by Calvin, the two super-hero grandsons brought the drone home to Jerome.

Other poignant moments happened around Dad's bedside, where he gathered groups and individuals to share family lore. Granddaughter Michelle Clark Kuykendall, who is expecting a son in late March, chose a few treasures from the trove of toys stored around the house to share with "Cole." Among them is a John Deere mini-tractor set from Rich's childhood. Dad asked her to hold the 1920s era "D" tractor while he told the story of using a life-sized version of that tractor during the summer he was 12 to pull boxcars at the rail yard. Earning $20 a day--a lot for the times!--he earned enough in two weeks to buy his town's first television set, with a gigantic antenna for tuning in the Oklahoma City station that was the only one in range. Michelle and her husband, Chauncy, listened with obvious pleasure, while we snapped photos of the storytelling with our iPhones. What glorious technologies my dad has tuned into over the years!

Dad opened his various treasure boxes to give away vintage coins, proof sets, heirloom jewelry and more that he has collected with care for many decades. He was generous too with his emotions and offered a lovely mix of heartfelt tears, laughter, love and gratitude with each of us. We couldn't be more grateful to him for showing us how to gracefully celebrate a life well lived.

As a "Take 2" to our 1970s rendition of "Away in a Manger,"  http://youtu.be/Gx9TH67-Yu8, our Niebaum family of four gathered round the piano to sing, with accompaniment from Mom. My dad stood tall, and his harmony rang clear. Matt videotaped this new version on his phone and posted it on Facebook and YouTube. What a big change from our little cassette-recorded original, painstakingly digitized decades later!

Check out the new video via this link: http://youtu.be/JxvceJL4-_I

Dad appreciates that he has some control over how he will finish his good-byes and plans to taper off from sustenance at his own discretion as the New Year commences. He says he is unafraid and grateful to have had this time to relish all of the love and life he has shared with us and all of you. He has enjoyed planning a service to celebrate his amazing life, and we all relish the roles that have been handed directly to us from him. I'm honored and grateful to be his daughter and to go through this process with him. It's a privilege to know each of you and to know the love and respect that you have shared with my amazing dad.

Peace and love to all,
Jerri Jeane

Jerome for Christmas

On December 14, I sent the following email to family members.... 

Good morning family,
I'm pleased to report that Dad had a really sweet day yesterday. His nausea was improved so that we gave him very few medications. He "ate" well, as I had made him a homemade chicken broth that felt good in his belly, he reported. He was alert and pleased to take a wheelchair ride to the living room, where Mom played "Home for Christmas" (a few loving tears shed) and other Christmas carols on her piano. She looked so beautiful and strong sitting there and playing her heart out for him, and he was receiving every note with much love and glistening eyes.

We watched the Christmas episode of "Modern Family" and shared a few laughs, and dad had a cozy nap in his favorite easy chair wrapped in the Pendleton Wool "Healing Hands" blanket Matt and I had given my parents last Christmas and wearing his cute Jayhawk Santa hat. Dad taught Mom and me how to light the gas fireplace for the season (gas on, pilot lit, logs out and back in--we did it!), and we enjoyed a fire, though the weather outside was delightfully mild!

Dad read the emails I've been sending and many of the wonderful notes that have come in response. He had a couple of visitors and a wonderful phone call from Michelle with a report that baby Cole is growing, active in her belly and getting ready for his March 25 debut into the world. (Great-Grampa Jerome has a gift for the baby tucked under the tree!)

The day ended with mom and dad cuddling sweetly and some sadness that this "normal" day might be rare, indeed. But aren't they all? We talked about staying present for what is happening right now, letting past regret and future fear dissolve away as we simply show up for the magic of the moment. I shared some of my recently learned insight about understanding that the body and its sensations, thoughts, emotions, memories and beliefs is very real and tangible but not the full story of who we are. From meditation work I've done, I shared my understanding that expanded awareness can surpass the limited perceptions of the physical self and provide a refuge for a frightened mind. Sadness and joy were present together as we considered this possibility.

We've never been here before. The journey is challenging, raw, full of unknowns. We are taking it slowly and lovingly.

Sending light and love from our nest in Cedarwood Hills,
Jerri Jeane

Bittersweet Homecoming

The first letter I wrote to friends and family was sent via email on Dec. 11, after we took dad home.

"We brought Dad home today, and he was so pleased to be in his own home, his own bedroom and with his beautiful Judiet. They had a sweet conversation about how grateful he was that we were able to coordinate this homecoming. But he was disappointed that his health wasn't magnificently restored to be home in the capacity he would enjoy the most. Acceptance is not linear for any of us, and we bump into resistance against this painful reality at regular intervals, interspersed with moments of understanding that disease and death are part of life and that our story of grief is shared by all who have ever lived and loved. We hold his hand and rub his head and shoulders, and we silently accept that these are precious moments to cherish.

I am so incredibly grateful that I have this amazing man as my dad.

We are being supported by the hospice team from the Visiting Nurses of Douglas County. They arranged for the hospital bed, a wheelchair and walker and other equipment. They will visit at least every other day and are on call 24/7. They have trained mom and myself to administer his medicines and "food" through the PEG tube, and we are meeting the challenge to be his primary nurses. We already called for help this evening when we weren't sure the tube was flushing adequately, and the nurse was here within a half hour and was beautifully reassuring and helpful.

I've stocked our fridge with food and look forward to making some nourishing soups and other comfort foods for the two of us and any visitors who happen by at mealtimes. It feels a little bit like tucking in for an impending weather event, I suppose.

We expect dad to be very sleepy in the coming days, and the medications that help with nausea do make him extra drowsy. He seems to sleep peacefully, and we relish the moments when his eyes open with a twinkle and he offers a bit of wisdom, a loving comment or a cute joke--When the nurses ask to "take a listen" with the stethoscope he usually offers, "Shall I sing?"

Mom looks forward to playing her piano for him to hear. She's been practicing, "I'll be home for Christmas." If you want to pray or meditate good vibes our way, send us sweet dreams so that we can rest in a loving nest of peacefulness."

Dueling Poetry with my Dad

From his hospital bed shortly after receiving a dire diagnosis, my dad wrote a poem that he emailed to my mom early one morning He often used humor to brighten a dark moment, and this poem was a poignant quip from him. I had arrived in Lawrence the day before, and I quickly typed a response poem that I sent him before posting it to Facebook. Our morning of dueling poetry provided a sweet way to express ourselves in this fearful time. Following are his poem and my response, which I've edited to keep the tense accurate now that he has passed. 

Tumor Rumor, by Jerome   

       

                             

There's a rumor I've a tumor

But you know that's not quite true.

Though one would be enough for me

I have been given two!

One that blocks my food and drink

From getting to my belly

Another one that hangs around 

My kidneys- kind of scary!

So, be gone you scary masses!

I'd miss you, not a bit!.

Perhaps a radiation blast 

will soon make light of it!

We cling to hope that skillful hands

Will guide lifesaving rays

And add each day some joy and love

To these remaining days!

Response from a Daughter

The humor sense that drove my dad

could steer a daughter mad, 

if not for honesty that shone

between the written lines.

His sense of wit showed to a T

his personality.

Gentle, kind, a wit macabre,

he quipped to say, please pray.

My father, who art in heaven, 

holy you are to me. 

Your wise regard for wit and word,

those teachings I have heard.

Your poetries, your histories,

your yard, with all its trees,

are planted well, with solid roots.

I cannot wear your boots.

But all the goodness you have shined,

is part of me and mine.

And though you had to leave this plane,

The smiles you brought remain.