Caryn Sullivan's Blog, page 9

Lessons from Life in the Middle

2/16/17

The sandwich generation. That peculiar term that applies when adult children are parenting their children, juggling careers,  driving carpool, and caring for aging parents. It’s the subject of a new anthology titled Here in the Middle. 

Curated by Christine Organ and Julie Jo Severson, Here in the Middle is a collection of essays that offer various paths into the joys and heartaches of writers whose lives are complex, stressful, and enriched by layers of familial relationships and responsibilities. 

When I was asked to write a blurb for the book I put on my author hat and dove into the manuscript. I appreciated the strong writing; the poignant stories that will resonate with many who are in the sandwich. Like an a la carte menu there is something for everyone who lands in that middle spot.

The 32 writers share short stories involving the journey into the twilight of life: health care, hospice, end-of-life planning, and end-of-life. Some writers venture into thorny territory, acknowledging sibling rivalry, relentless guilt, even feeling more like an outlaw than an in-law. The stories lure tears and smiles. 

But I’m not in the sandwich, so much of this was foreign territory.

My father died of cancer when I was in junior high, my mother days before I married at age 23.

That my children had no relationship with their maternal grandparents and a limited one with their paternal grandparents is a relentless source of sadness for me. 

As I read about multi-generational relationships between mothers, about fathers teaching daughters how to play poker or how to fire a weapon, I found myself shrouded in a cloak of green. 

Here’s the crazy thing. Tough as I know it can be – for I’ve watched friends navigate it – I envy those in the middle of the sandwich. Not because they have to schlep their parents to doctor appointments or take their keys away.

I envy them because they – and their children – have time with their parents I never had.

There is no equivocation in this anthology – when an aging parent moves close to home – or into the family home – there can be a lot of stress and angst. But there can be more. There can be healing. And joy.

I loved the stories about children spending time with grandparents, whether they share a home, a meal, or just bits of conversation. Take writer Jackie Pick’s story titled  ‘Grandparent Privilege.’ Pick recounts how nervous she was when her children had their first overnight with their grandparents. How she was certain that her parents would be overwhelmed, incapable of getting her kids to eat dinner and go to sleep.

But then…there was the unanticipated.  During one of several calls to check in, she heard a chorus of voices singing Pharrell William’s hit song Happy. Pick was dumbfounded. And at that point in her essay a voice in my head whispered, “Oh, what I would have given….”

Here in the Middle offers wisdom from fellow travelers. Indeed, it has no shortage of heart-wrenching stories of parents forgetting their adult children’s names, of new personalities replacing familiar ones as Alzheimer’s tightens its grip on a loved one.

But it also offers perspective. This life of ours is short. Even the tough times don’t last forever.  

Ambrosia Brody grew up with her grandmother in her home. She writes in ‘Moving Nana In’  about deciding to move her mother into her home as her own family grew and her mother assumed caregiving responsibilities. The move carried a price. Brody worried about the pressure of  being her mother’s employer, about taking her mother away from her familiar neighborhood.

But she recognized the gifts that came with the move. Her daughter loved having her Nana in the house. Brody relished the laughter that filled the house as the two had tickle sessions before bedtime.

In ‘Shapes in the Clouds’ author Pamela Valentine recalls how her grandfather was a virtual stranger when he and his wife moved into her childhood home, a space so small it was already bursting at the seams before two aging adults were added to the mix. She describes how, as a young girl,  she would often walk and talk with him. Her grandfather told her about the grandmother who died when she was three years old and about her own father’s youth. He told her about his days of working in rail yards. He also taught her how to speak Polish and how to play pinochle.

Yes, there were difficult times as her grandfather navigated lung cancer and Alzheimer’s. But years after his death the author puts a pin in the message that resonated most with me: in all relationships there are challenges and obstacles and gifts and opportunities.

Those stories speak to me because I’m blessed with three (soon to be four) granddaughters. Thinking of Pick’s story, I want to be that grandma – the one who sets up forts with the girls, takes them to the zoo and the Children’s Theater, listens to their woes about mean girls or cute boys who don’t throw glances their way.

I want to be the grandma who imparts shards of wisdom the girls will put away until some life event summons them to the surface.

I plan to be the grandma who belts out Happy with her granddaughters in a voice that will never land me on The Voice.

While Here in the Middle offers a roadmap for navigating the most challenging times, it also reminds us that we can – should – embrace life in all its phases.

This much I know. After the final goodbyes are exchanged, after the hospital bed is removed from the living room, after the last medicine bottle is emptied, we’re left with the choice of how to fill the void, how to remember the time we shared. 

To my mind, that is the hidden gift of Here in the Middle. 

W hat about you? Are you in the middle? What gifts have you discovered there?

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Norm Coleman’s Lessons from Loss

2/5/17

When Donald Trump was sworn in last month Norm Coleman witnessed  the peaceful transfer of power, though the New York native had supported several other candidates. I was curious about his view of the Trump presidency and the visceral reactions to it.

Coleman has been a Democrat, a Republican, the mayor of St. Paul, a United States senator, and now, a D.C. lawyer and lobbyist.

Had he gotten his way he would have been governor of Minnesota and at least a two-term senator. But he lost the governor’s race to a professional wrestler whose victory was as unlikely as Donald Trump’s.

And, after a protracted legal battle, he lost his Senate seat to a professional comedian – by 312 votes.

The losses stung, to be sure. But with time comes healing and with experience comes perspective.

Coleman has dealt with much worse than losing an election.

Early in their 35-year marriage he and his wife, Laurie, lost two children in a 10-year span.

Their first child, Adam, was born in 1983 with Zellweger syndrome, a relatively rare condition that results in failure to thrive. Coleman recalls the “Houston we have a problem moment” when he learned his son would not live long.

“You’re waiting for that magical moment, but then you see the looks of the doctor and the nurse. You’re told your baby has serious problems and is not going to live. They take the baby away from you and suddenly the world collapses around you.”

The odds were one in four that another child would be born with the same syndrome. But Coleman looked at the odds as three in four that it would not happen. It was in God’s hands, he says. Faith prevailed, as they were blessed with a son, Jacob, and a daughter, Sarah, adults now.

Then the odds worked against them. Grace was born in 1992 with the same syndrome that had claimed Adam. They shared just a few months with her.

The deaths of two children shaped Coleman’s perspective on dealing with loss and disappointment. “I know what the end of the world is and nothing else is in that category,” he told me recently.

Adam and Grace’s deaths left him with a sense that there were things he had to do. And surviving those tragedies prepared him for other losses.

In 2015 he learned a sore throat was actually Stage 4 throat cancer. He participated in a clinical trial at Mayo Clinic, undergoing surgery, chemo, and radiation. Last year he was pronounced cancer-free.

Like many who grapple with it, Coleman says cancer has made him better. It’s also compelled him to be a spokesman of sorts. If something seems amiss with your health, have it checked out, he says. The sooner you receive treatment the better the outcome.

The center-right Republican wasn’t a fan of our last president and he’s no fan of our new one. But he feels an obligation to help him to succeed, for ultimately, Trump’s success is our success, he says. “As citizens we should take that approach until proven otherwise.”

As to the angst about Trump’s presidency, he says, “I don’t mean to be insensitive, but life is tough. Things aren’t always supposed to be easy or feel good. It doesn’t mean you shouldn’t be concerned or even fearful. The last thing you do is assume the fetal position. Deal with it. Try to figure out what else you can do despite the fact that the reality is there. You can do a thousand things. You can look harder for your next candidate.”

He doesn’t suggest that it is easy for the candidate or his team to lose an election, to believe you are on the right path but miss the opportunity to make policy and more. It’s not fun. It’s hard.

“People win and lose and the republic marches on. I won a mayor’s race. A lot of people waited eight years until I was gone. There were probably people who were thrilled that I was gone.”

But his experience has been that when a door shuts a window opens. The question becomes, “What’s the next plan?”

Though it seemed terrible at the time, his political losses worked out for the best. “I didn’t win the governor’s race that I should have won. But if I had won I wouldn’t have become a United States senator.”

And if he’d been re-elected to the Senate he wouldn’t have been able to spend so many weekends at the lake. Time at the lake takes years off of your shoulders, says the 67-year-old. Despite all the ups and downs, or maybe because of them, his life could not be better.

What lessons have you learned through loss?

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Celebrating Five Years at Spare Key: Getting to the Number Zero

2/5/17

Periodically I invite other writers to share their inspirational stories. This week we hear from Erich Mische, executive director of Spare Key, a Minnesota nonprofit that operates on a shoestring but has a large wingspan. Though my family never accessed the services, we surely could have when my daughter was hospitalized for nearly a month while undergoing a bone marrow transplant. I’m honored to be a member of Spare Key’s advisory council and to shine a light on its important work. 

From Spare Key Executive Director Erich Mische:

This week I celebrate my 5th year as executive director of Spare Key.  I do so in a year in which Spare Key celebrates its 20th anniversary of providing housing grants to families with critically ill and seriously injured children in the hospital.

It has been a tremendous honor to lead this organization.  It has been a privilege to be a part of a team of dedicated staff, remarkable board members, generous donors and sponsors and thousands of volunteers who have come together to help serve others.

I never cease to be amazed at the willingness of people to give money to Spare Key to serve others they will never know and who will never know who has given them such kindness.

In five years, I have had my shares of ups and downs.  Highs and lows. 

My first six months at Spare Key may have been the worst of my life.  But, I decided to give it six months more and now, five years later, I have found a new lease on my passion for this organization.

The bulk of my adult life has been in public service.  Spare Key is a continuation of that life.

I’ve taken the phone calls of joy from those families we’ve been honored to be able to tell that we have their mortgage payment covered so they can focus on their child’s care and recovery.

I’ve also taken the phone calls of anger, sadness, disappointment and fear from those families who we have had to tell that we weren’t able to help them because we received far more applications that month than funds we had available.

The former are the calls that validate for me the mission of Spare Key.

The latter are the calls that motivate me to work harder to serve every single family that needs Spare Key’s help.

A year ago, I felt my enthusiasm and passion for Spare Key were waning.  The daily grind of raising money, standing in front of groups of people pleading for funds and the non-stop competition for resources has a way of exhausting the spirit.

Yet, over the past year I have found, increasingly, that my enthusiasm and passion – my drive – to continue to strengthen Spare Key’s purpose of helping families “Bounce and not Break” has increased.

There is no denying my staff and board have played a significant role in that renewal of spirit.  Their level of dedication, professionalism, selflessness and purpose inspires. 

Each day I walk into the office there is somebody doing something to help someone. 

It’s not a big staff.  Besides me there are three full-time and one part-time employees of Spare Key serving families in four states.

I often laugh at the absurdity of the amount of work 4 ½ of us do.

It’s not supposed to be possible.

But, somehow, it is.

My board is big, diverse and engaged.

Every non-profit believes it has the best board of directors in the world.

I know I do.

Nearly every single member of the board of directors brings something to the table to move Spare Key forward. 

Spare Key relies on all of them to be involved to achieve our goals, mission and objective.

Five years is a long time in a short life even if one intends to live to be 100.

It’s 1/20th of the total of that life.

For Spare Key, my 5 years represents 1/4th of its life.

I can see Spare Key’s future.  

One that expands its capacity to serve more people.  One whose mission will remain purposeful and intact but will meet the needs of a new generation of families needing our help.

A “one-stop” shop for families seeking light in the darkness.  A place where social workers will be given many of the tools they need to assist families with one phone call, email or fax. 

I see Spare Key engaging in new ways to create sustainability so that fewer resources have to be expended to raise more resources to help families with sick and injured children in the hospital.

Raising money is hard work.  How we raise money must change and evolve.  And, it will.

In our 20th year we have adopted a modified version of our motto, “Spare Key helps families Bounce and not Break.”

That motto is “No matter the illness.  No matter the injury.  Not matter the income.  Spare Key helps families Bounce and not Break.”

It’s not elegant but it is powerful.

What has made me do the work I have done for five years, and what inspires me to continue this work with a new zest for what we can do, is that motto.

But, it’s something else, too.

A number.

It is the number Zero.

That’s the number of calls I want to some day receive from a family we have not been able to serve.

Because there won’t be a family we won’t be able to serve.

If I have anything to do about it.

I intend to. 

The post Celebrating Five Years at Spare Key: Getting to the Number Zero appeared first on Caryn M Sullivan - Living a Life of Resilience.

From Caregiver to Patient and Beyond

1/2/17

Five years ago Lisa Mackall spent so much time writing about her husband’s traumatic brain injury on CaringBridge she published a book of her journal entries (27 Miles: The Tank’s Journey Home). At that time she was writing as a wife and caregiver. She went on to become an advocate for people with traumatic brain injuries and the co-founder of Blue Watch, a nonprofit that offers wellness resources to law enforcement personnel and their families.

Her second foray onto CaringBridge came as unexpectedly as her first. This time she is writing as a patient. Her first entry on March 4, 2016, offers an introduction that, while written in fairy tale style, is anything but that.

Once upon a time a wife came to CaringBridge to tell the world about her husband. See, he was a police officer and had crashed his squad car and almost died. But this brave warrior didn’t die. Instead, he fought back from his brain injury to return home to his family and kept working hard to return to his family in blue.

But alas, he could not return. His wife, saddened by his despair, stayed by his side, loving him and encouraging him to find a new life.

And they did. Life moved on. New jobs, graduating children, new house. The sun began to shine again. 

Until one day the wife was told some terrible news.

Breast cancer.

That can’t be! Haven’t we fought enough? Aren’t we done fighting the hardest of battles?

Apparently not.

The wife, remembering with fondness the purity of writing and the clarity of thought, returned to CaringBridge once more.

Seeking hope, purging emotion, and praying for healing.

This is the second chapter of the Frank and Lisa Mackall story.

Last March, fresh off a vacation with Frank, Lisa learned that what she thought was an infected lymph node in her armpit was actually metastatic breast cancer. She was still reeling from the news when she was inundated with offers from people asking what she needed. She put them off. That she would need help again was unfathomable.

Lisa may not have recognized what she needed, but others did. Before she could protest there was a meal schedule. Two GoFundMe pages were established: https://www.gofundme.com/lifting-up-lisa-and-family and https://www.gofundme.com/24xuugzg.  Ever the caregiver, Lisa says, “It took the reality of chemo and the impact of that on my body to feel like I deserved anything, because then I started to feel unwell.”

A cancer diagnosis naturally breeds questions such as why or why me? Lisa’s diagnosis certainly did. “I did all of the right things, had my mammograms regularly, had strange lumps and bumps looked at and I still ended up here.” And the family had already gone through more than most with Frank’s near death and long recovery.

With parents and siblings living out of the area, she counts her in-town family as those that surround them, those who she refers to as “the village.” They are the friends, colleagues, and law enforcement folks who seem to show up exactly when she needs them.

In the second chapter of the Mackall story, Lisa’s co-workers at St. Paul’s Regions Hospital have been indispensable, much as Frank’s colleagues were. “I am blessed to work at the same place that I receive treatment, which made it easy for me to feel comfortable as I lost my hair, stopped eating well, became tired, and had to reduce my work hours. My team is one of my greatest blessings, and even at my most sick, and in my own hospital, my co-workers were always there for me.”

The village has expanded to include fellow travelers. “Through this trial I have again been incredibly blessed to meet people that are following a similar path. People that I would never have met, that have made a big impact in my life. These people are amazing. Fighting the same battle, knowing the same scary reality…there are so many of us.”

Lisa’s treatment has been exceptionally grueling, with dire interludes along the way. Soon after her diagnosis she underwent a 12-week course of chemotherapy. Surgeries followed the drugs: the double mastectomy and a prophylactic ovary removal in early October. But her bowel was nicked during the second surgery. And a nightmare ensued.

It took days to recognize that sepsis had infiltrated her body. Lisa returned to the hospital, had three emergency procedures, was put on a ventilator, and spent more than half of October there, much of the time in intensive care.

She went home with a giant, open wound on her abdomen. Movement was problematic; pain was excruciating.

She returned to the hospital twice in November and again in December. Another bout of septic shock landed her in the ICU again. She did her Christmas shopping on Amazon while heavily medicated but didn’t recall doing so until days before Christmas when packages began arriving at their home.

She regrouped over the holidays and reluctantly embarked on a five-week course of radiation.

When we are thrust into a caregiver role we become myopic by default. We can only juggle so much. For years Lisa had been focused on Frank and their four kids. “They are always my first thought and biggest worry, and they were able to make it through those very scary times when I was not even conscious.”

“It’s easy to lose perspective of everything around you when focusing on someone else so much. I have had months where I forgot to even look up and ahead because I was so focused on what I had to do day in and out to make sure Frank was okay.”

For a long time she didn’t allow herself to feel the fear that accompanies a metastatic cancer diagnosis. But fear is dogged. It will hound you. Lisa finally acknowledged the fear that not just she, but all her family members, live with.

“Cancer hit us hard, and in a way that I never imagined. It changed our priorities even again, and made us look at what truly mattered in each day. Instead of thinking that I had to do everything, I had to break away from that control and give it to other people, including Frank. I feel that it helped me to see more of him than I have in a long while, things that he can do, more than I thought or allowed in the past either from fear or just me being controlling. It is easy to take everything over, it is much harder to trust those around you to take care of what is most precious to you.”

As the family welcomed 2017 together, Lisa returned to CaringBridge with her reflections.

Five years ago, the holiday weekend was just like this one – an extra day off before returning to school and work, a day that was expected to be relaxing and fun. It didn’t happen that way. Instead, tonight, right after midnight, will be the five-year anniversary of Frank’s crash. Five years. It feels like forever and a flash at the same time – it feels like yesterday, and a lifetime ago. After the last year with such a huge focus on my own health, I feel that I have been given a glimpse into the world of what a fighter Frank was while he worked to recover from his brain injury.

Although I was with him every day, being on the other side of a life and death battle is very different – and it changes your perception of everything around you. You see every day differently; moments are made and cherished, recognized, understood, and lived. If you choose, peace can reign, when living without fear of the future, and knowing that life will carry you where you belong.

I believed it 100 percent when Frank got hurt, and I believe it again now while fighting to recover from breast cancer. I was privileged to witness a man fight for his life and would expect nothing less from myself at this point. It is a choice to do everything that I can to fight back, and fighting back is what I am doing.

Attitude is a powerful companion to drugs and surgery when combatting cancer. When Lisa was diagnosed she didn’t freak out. Rather, she told herself that she would be okay. She’s not Pollyanna, she says. There were scary times and could likely be more. But in a bigger picture way, she believes it will be okay. “My faith grew tremendously when Frank got hurt, and it’s as solid if not more so today.

Lisa could certainly harbor bitterness or anger. But she’s made a different choice. “Unfortunately, things happen, and I became one of the .085 percent or so that had life-threatening complications from a simple procedure. It should not have happened, but it did. Thankfully, I had great care and a fighting spirit. And I lived to tell about it, and to continue fighting.”

She looks for the “better” in each day. “Like all things, time will continue on, and with each day, I expect things to get better. Truth be told, not every day is better, but I can always find something that is better about each day. Whether it is driving myself to an appointment, or braving completing two loads of laundry in one day, it is better. Today, with no tubes attached, I did my first yoga in six months.”

What does she see for herself on the horizon? “I really look forward to becoming part of the Dragon Divas (a dragon rowing team of breast cancer survivors) this summer. Hopefully, I will be well enough to at least attend some events and participate at some level. But someday I know I will get to roll with them.”

I’d place odds on her doing just that. After all, this is a woman who writes, “I know, and hold on to the fact that we can, and will, focus on what is important, and do our best to look forward into our lives. It can be done, regardless of what else comes into our lives. We have lived looking forward, not back, for five years. And we won’t stop now.”

Author’s takeaways:

Trials and tragedies stretch and educate us. Lisa is an astute learner and a powerful teacher. My takeaways from the Mackall family’s story:

Appreciate what you have.

Understand how hard things can be.

Everything is relative. She says, I know my suffering is minor compared to what others deal with when trying to fight cancer. I understand that my pain is not the worst pain.

Put the positive in your pocket and withdraw it when you need it.

Give up control. You may give another person an opportunity to grow and soar.

We can find the “better” in our experiences if we choose to look for it.

What are your takeaways?

 

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Taking the Poke and Saying Thanks

1/10/17

I’ve never enjoyed being poked by a stranger in search of my blood. On the discomfort scale it’s akin to having a dental hygienist stretch my lips to floss the wisdom teeth I never lost. But there’s a notable distinction between the two.

While flossing is good for my health, having my blood drawn can save others‘ lives.

Though my late husband was a regular blood donor, I’d never bothered to register and donate. But then my daughter underwent a bone marrow transplant to rid her of a rare and deadly blood disorder known as PNH.

Alhough her brother’s bone marrow was a perfect match, it was months before her body accepted his marrow donation and produced healthy new blood cells. During that time she had no choice but to be hooked up to yet another IV to receive blood transfusions.

It’s an irony that confounds me 11 years later. She had the bone marrow transplant to obviate the need for regular blood donations. Yet, the blood of many strangers sustained her while the bone marrow matured.

Strangers to whom I can never give thanks, for they will always be anonymous.

What’s a mother to do?

Become a blood donor. And so I did. 

Once my O-negative blood type pegged me as a coveted blood donor I became quite popular with the Red Cross. I took the poke and filled the tubes. When enough time had passed and my hemoglobin hit the magic number I returned to donate again.

But after a half dozen donations something strange happened. On a July morning I couldn’t keep up with my fellow cyclists on what should have been an effortless ride. In the days that followed I became increasingly exhausted. My head hurt – a lot.

A doctor (not my regular) suspected I was depressed. He was wrong.

My symptoms worsened so, as autumn ceded to winter, I visited my regular internist. She checked my iron and ferritin and discovered they were shockingly low. I began ingesting mega doses of iron and underwent GI tests to rule out celiac disease and colon cancer. 

When those tests were negative my doc fingered the blood donations. Though I’d met established protocols, the schedule must have been too aggressive for my body. 

It’s been just over a year since this ordeal. I’ve given my body time to replenish iron and ferritin stores. I’ve summoned the courage to schedule an appointment with the blood bank – courage because the prospect of fighting colon cancer had scared the – well, scared me a lot.

Why did I return to the Red Cross site? Because there compelling reasons for its call for donors. And those reasons trump my skittishness.

I can’t forget that every two seconds a patient requires blood; patients with sickle cell disease and aplastic anemia who need regular blood transfusions, who rely upon strangers to ensure they celebrate another birthday.

I can’t forget that life is unpredictable. You never know you when you might be shot by a stranger, rear-ended by a drunk driver, or caught in a burning building and require an emergency blood transfusion.  And that demand for blood outpaces supply. 

I can’t forget what my daughter endured and how strangers helped her to kick PNH to the curb.

Though it’s easy to become consumed by my own issues, some needs are simply greater than my fears. So come Saturday I’ll take the poke. There may be a stranger awaiting my special O-negative blood. My blood donation is my way of repaying a debt and saying thank you to those who stepped forward when my daughter’s life depended on them.

What about you? Are you a blood donor? Have you been on the receiving end of a blood donor’s gift?

 

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The Secret Power of Expressing Gratitude

 

1/3/17

Everyone is talking about gratitude these days. It’s good for your soul to feel grateful. Gratitude fosters resilience. What’s even better than experiencing gratitude?  Expressing your gratitude – to your boss for the great year-end bonus, to your spouse for giving you a day at the spa, to your neighbor for shoveling your walk when your grandma entered hospice.

But I’ve discovered a secret. It’s more powerful than feeling grateful. More powerful than expressing gratitude.

It’s being on the receiving end of another’s gratitude. 

I’ve had an unusual professional life, derailed by and redirected by my personal life. It began with a shingle, clients, and a time sheet. But when my son was diagnosed with autism in 1993 I exited the practice of law to become his caregiver and advocate. 

When my daughter had a bone marrow transplant I became her constant companion, shaving her head when the chemo attacked the brown hair she held firmly to; preparing meals she asked for, then tossing them into the disposal when she realized her brain and her stomach weren’t in sync.

And more.

I’ve expressed my gratitude for medical professionals, caregivers, family, friends, and neighbors who lent a hand in usual and unexpected ways: to my son for donating his bone marrow to his sister; to the doctors and nurses and family life specialists at the University of Minnesota who restored her health; to CaringBridge for affording me a platform to share, process and connect during a frightening time; to the neighbors who swept out my garage, took my car to be washed, and brought flowers, toilet paper, and food after my husband’s heart failed him.

Expressing gratitude out loud and on paper has helped me to heal,  to repay, in small measure, a debt that grew legs.

But I’ve also been on the receiving end of gratitude and that engendered a much different outcome. 

My circuitous professional path led me back to my college degree in communications when, on a whim, I wrote an essay about the constant state of vigilance required when a child has autism. What came next was unexpected and life changing.

Within days of publication in the St. Paul Pioneer Press my essay generated email after email from strangers, all expressing the same sentiment: thank you for sharing your story, for your story is my story.

Those emails gave me pause. Maybe I was on to something. I had never considered being a columnist. But if my writing could help others, then maybe that was what I was supposed to do.

I wrote another piece about my family’s experience with autism. More emails.

I shifted gears and wrote about other challenges people face, some of which I had experienced firsthand, others I learned about from friends or strangers: mental illness, addiction, cancer, brain injury, military service….

Everyone has a story.

Nine years later I’ve written hundreds of columns. With the encouragement of family, friends, and fans I wrote a memoir. I’m proud and humbled by the outcome. People have told me they wished they’d read Bitter or Better years earlier. They’ve told me I’ve inspired them, helped them to heal.

The icing on the cake is the 2015 Midwest Book Award for inspiration. 

All because strangers took a moment to tell me that my story had touched their hearts. And that they were grateful. And gave me the idea, the courage, and the confidence to keep writing. 

As we embark on a new year I’m eager to share more stories on the page and from the stage. I’ve found my footing, my purpose. Every email from a reader, every comment from an audience member is fuel in my resilience gas tank. When doubts insinuate themselves into my soul I reach into the reservoir of gratitude and power forward.

The gratitude of others is a gift that keeps on giving.

What about you? Who has given you the gift of gratitude? How has it helped you?

 

 

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Obstacles to Resilience: Frigid Temps, No “Inn” to Call Home

 

1/1/17

It wasn’t that there was no place at the inn. It was that there was no inn. When December wrought frightful temperatures and meteorologists warned Minnesotans to limit outdoor tie, Dakota County had virtually nothing to offer single people who needed a warm place to sleep.

While the homeless rate in Minnesota dropped in recent years, it has increased in Dakota County. Chris Koop, executive director of Hastings Family Services, describes a dramatic increase in homelessness. Whereas a few years ago they were serving one to two homeless people per months, HFS served 60 people last summer.

Resources are scarce. Dakota Woodlands offers temporary housing to mothers and children – not men. It accommodates 22 families at a time. Some families have to split up. Mothers have to take their children to Dakota Woodlands while the fathers sleep in their cars. And the Eagan shelter has a long waiting list. While Lewis House provides shelter to battered women there is nothing for youth or single men.

Consequently, high school graduates live in their cars, sleep under bridges, spend nights in fast food restaurants or Laundromats because they can’t afford the rent or find affordable housing in an area with extremely low vacancies. They try to sleep in warm libraries during the day so they can go to their nights jobs at Super America or Taco Bell, for many homeless people hold jobs. Or they end up in shelters in St. Paul or Minneapolis, creating a burden on those resources.

With cold weather imminent in December, Dakota County reached out to churches, asking if they could provide shelter. Three churches answered the call, each opening its doors for four nights. So for 12 days surrounding Christmas, otherwise homeless people had a warm bed and meals.

Grace Lutheran Church in Apple Valley, Prince of Peach Church in Burnsville and Spirit of Life Presbyterian Church in Apple Valley each took four-day shifts. Pastors and volunteers worked to create “the inn” just in time for the holidays. Dakota County personnel assisted for four days, until they’d exhausted their budget.

The first shelter opened on Dec. 15. Within 90 minutes 16 people were at the door. The next day there were 24. A  third of them had been sleeping in their cars. After 12 days the churches had hosted several dozen men, women, and children.

Each story is different but shares the same theme. Many of the adults graduated from local high schools, as long ago as the 1960s and as recently as last year. Some struggle with addictions, mental illness, or just back luck. A pregnant woman, family with 4-year-old twins with autism, retiree with a masters degree in information systems – different journeys had led them to the same destination.

Visitors arrived at the churches with myriad health issues: untreated wounds, Crohn’s disease, cancer, and mental health issues. Teething babies and exhausted, incontinent adults slept on makeshift beds, wrapped in donated bedding.

Grateful guests hoped their story would be told, to dispel myths that the homeless only dwell in urban areas and that all homeless are unemployed. They yearn for a permanent solution. The story got some legs, on social media and community television. But their Christmas wishes for a permanent shelter went unanswered.

Last Monday the temporary shelters were shuttered. Many of the homeless returned to their “mobile homes,” cars temporarily resting in church parking lots. Others made their way to their customary sources of warmth.

Monica Nilsson ran the operation for 12 days. Nilsson used social media to chronicle the story in real time, to issue calls to action. Volunteers responded quickly to requests for bedding and clothing. The request for donated goods gave way to requests for cash.

Donated bus tokens and gas cards are helpful, for many homeless people who sleep in their cars need gas to keep them running. Others use Mall of America, Union Depot and Target Field transit stations as de facto shelters. But there is an abundance of food and toiletries donated by people like myself who want to do something, Nilsson says, and food or toiletries don’t get to the root of the problem or offer a lasting solution.

The best way to help is to become educated about the problem and to make financial contributions. Dakota County established a Dakota County Shelter Go Fund Me with a $50,000 goal. Earlier this week the fund had exceeded $14,000. If there is enough money in the fund it could pay for another temporary shelter if bitter temperatures return.

The overarching need is for a plan. But zoning obstacles and lack of appetite by communities have stymied a solution, Nilsson says. A homeless advocate and consultant, she is part of a group of county representatives and church personnel who are addressing the need for a permanent shelter.

The Dakota County Board of Commissioners serves as the public housing authority. Commissioner Mike Slavik says board members are well educated on the issue. In an interview with Hastings Community TV he acknowledged that while the board has been working on how to address the issues they haven’t kept up with the need. “If we can’t find a solution, who else is going to?”

Nilsson says she believes a permanent site can be identified by 2018. While that is encouraging, that’s a long time off when you have no “inn” to call home.

The post Obstacles to Resilience: Frigid Temps, No “Inn” to Call Home appeared first on Caryn M Sullivan - Living a Life of Resilience.

Leaping Before Looking

 

12/28/16

Guest blogger Claire Nitschke aspires to be a sommelier.  Since she graduated from the University of Wisconsin-Madison in May 2016 she’s been taking steps to make her dream come true. I think she has a lot of gumption. What do you think?

On her blog, www.claireseats.com, she writes about her first adventure in wine country.

They say to look before you leap. They say to not cry over spilled milk. They lack adventure and passion. I had the opportunity to work my first harvest in Oregon with Larry Stone, one of the nation’s most renowned sommeliers and wine educators. Hesitation was not an option.

I did not look, I leapt, bounded, boarded the plane and could not even picture in my mind where I was going. I had never been to Oregon before. Never seen an American vineyard before. Never volunteered for a job I knew nothing about before. But that is exactly where you go and what you do when you find out Larry Stone (!!!) needs volunteers for his first harvest at Lingua Franca in Willamette Valley, Oregon.

As the novice wine enthusiast, whispers of Master Sommeliers were always just out of my conceptual understanding. I knew that it was hard, very hard, to become a MS; I knew that there are only 230 humans to earn the title, 147 humans humans in the Americas, of those 23 American women. The whispers told me Larry had passed his Master Som test in one go. I was fairly certain this feat was almost unheard of. So with a vague understanding of who this man was and what he was asking me to do, I set out on the vineyard phase of my wine adventure.

Portland is a bustling mecca of food, culture, drug addicts, and beauty. Amity it is not. Amity is rural America with mountains and farmlands, one corner store, a fancy restaurant, and kids going to small schools with classmates they’ve known their entire lives. It is wonderful in its own right. And it has the luxury and curse of being in the middle of the wine boom in Oregon.

My compadres and I stayed in a little 3-bedroom house in Amity and made the drive over to the winery every morning. Myself, two from Cayman Islands, two from Austria, and a Frenchman staying at another location were joined daily by local wine makers custom crushing at the facility, Larry, his daughter Siri, Thomas the wine maker, and our main man Bernard who made us our lunches. Long days, physical labor, and love of wine brought us together.

Lingua Franca was a construction site. While it was close to being finished, when you are in the middle of a huge harvest, nearly finished is close to barely started. Temporary wiring, mysterious tubes, unfinished walls made the work interesting; even half of the floor was not poured yet. Have no fear, some days we were able to squeeze out 14-hour work days sorting 24 tons of grapes unfazed by construction.

Sometimes monotonous work, sometimes therapeutic, sometimes we were hung over, but every time the shake table was our marching beat, the destemmer our pace setter, and stink bugs and earwigs our constant companions.

Day one I was thinking about how they say a job worth doing is worth doing well. Worried I would miss one pruned cluster, overlook an unripe grape, or somehow ruin the entire tank of wine in the time it took the grapes to travel down the shake table into the destemmer.

By day two, there was a system, I knew what to do, how to spot the bad grapes. I felt like Saint Peter. I passed judgment on who would make it to the pearly gates and be allowed to fulfill the highest glory of becoming wine, and who were turned away, bound for compost. This heightened the sense of divinity I attributed to the work. It helped me get through the constant stream of grapes.

In the evening, we cleaned. Cleaning was a huge operation. We hosed, we squeegeed, we power washed, we unstacked, we restacked, we slept well.

The people were some of the best. The generosity was a quality no one I met there was lacking. We shared benchmark wines at lunch, shared David and Larry’s collections of magnums and champagne with dinner, and were never left thirsty.

Harvest and the physical passing of time it represents came at a time of change for myself as well. We celebrated my 23rd birthday under the stacked barrels, with celebration napkins, champagne, wines, and great spirits.

No longer in school, fostering my interest in wine, a loose plan plan to move to NYC, this harvest transformed the last year of hard work into must that will turn itself into wine and marked a new chapter of my life. I was feeling melancholia and didn’t want to stop. It happened that Stephan, an Austrian wine maker, was working the harvest at Lingua Franca until his own harvest starts in a few weeks. The conversation came up, and the deal was done. After Oregon I will be going to Austria to work the harvest in the Old World at a family winery.

Lingua Franca was the first place I sipped still fermenting wine, the first place I stomped whole cluster grapes with my bare feet, the first place I met some of the people I hope to know the rest of my life. I will always remember this trip as my first harvest. It was the wind that fanned the flame and I officially caught the wine bug.

 

Grace, Gratitude and Giving

12/25/16

There is a family with an empty chair at the table today. I don’t know who they are or who once sat in the chair. I just know it is empty.

There is also an intact family filled with gratitude and grace, every seat at their table filled. Though both families have a story I can only share the one I know. It’s about an Inver Grove Heights, Minnesota family who celebrates each day because strangers gave their son a life-saving gift. It’s a story of grace, gratitude, and giving.

When, 14 years ago, Natalie and Ben Bushaw learned they would become parents they assumed they would have one child. Months later they learned one baby was two nearly conjoined twins who, if they survived, would be born with significant complications. Rejecting suggestions of selective reduction they drew upon their strong faith and took the pregnancy to term. Their four-pound boys were born in June 2003 with multiple congenital defects – and gumption.

The simple explanation is that Owen’s problems centered on his GI tract and Logan’s on his heart. The University of Minnesota campus became a second home as the boys visited more than 200 times for both minor and major procedures. By age four they’d undergone 18 heart, hand, and bowel surgeries. Despite a few hiccups Owen and Logan did remarkably well.

Until a year ago, when it became clear Logan’s single ventricle heart would not perform much longer. So last summer Logan, Owen, Natalie, and Ben, a teacher and boys basketball coach at Simley High School, traveled to St. Louis, Missouri for the heart transplant they’d always known was inevitable.

Enter the family with an empty chair. I do not know the circumstances that led to them making a life-saving gift to Logan last summer. What I know is that Logan’s perpetually oxygen-deprived lips are now pink instead of blue. With fully oxygenated blood pumping through his body he can run and play, as a 13-year-old boy should.

I met Natalie years ago when I joined the Parent Advisory Board for the University of Minnesota Children’s Hospital (since renamed University of Minnesota Masonic Children’s Hospital). Today we serve on a different committee that supports mothers and children’s health. We share a debt to those at the University who doctored both the Bushaw boys and my daughter, who underwent a bone marrow transplant there in 2005.

One thing remains constant. Natalie always has a smile on her face and in her voice. How does she do it, I’ve wondered. Why is she so upbeat when she could be so depleted?

This I know. Resilient people don’t travel alone. They find strength in solidarity. Natalie, public relations director for Life Time Fitness, started a CaringBridge site before the boys were born. It’s their “go-to place for comfort, reprieve, safety, prayer requests, journaling, chronicling, and solace.” Posts, visits, prayers and comments number in the hundreds of thousands. There is a power that comes through CaringBridge to provide extraordinary strength, Natalie says.

Resilient people also reach out and give back. Natalie doesn’t just give back. She leads. In addition to chairing the Parent Advisory Board the past 10 yeas she has twice chaired FashionFest, a major fundraiser for Masonic Children’s Hospital.

Giving back has become a family activity. Their Logan Loves Foundation is getting off the ground with a mission to bring joy and healing to children during hospital visits by providing products and services that Logan, a “professional patient,” knows they will appreciate. It has unexpected benefits. This past week, Minnesota Vikings cornerback Xavier Rhodes and Logan distributed gifts to kids at Masonic Children’s Hospital then talked about Logan’s heart, Xavier’s football experience and more.

Another hallmark of resilient people is they are not just grateful. They express their gratitude. Natalie’s gratitude is best exemplified in a letter she penned to Logan’s donor family this week. It reads in part:

As I write this note, we are approaching the five-month mark from the day our 13-year-old son received the gift of a new and perfect heart. We know this means your family is also approaching the five-month mark of losing someone you loved very, very much. With that in mind, and Christmas just days away, when many of us as Christians will be celebrating the greatest gift of all, we wanted to reach out to you and share our eternal gratitude for the gift of life you gave to our son and to our family….

Our own hearts – both our physical and emotional – cannot fathom the sorrow then and now that you feel and for that, we are so truly sorry and so very sad for your loss. As a family who tries to live out loud in our faith and trust in the Lord, we have prayed so hard that you found comfort, peace, strength and joy in celebrating the precious person you lost and knowing that he or she was able to provide life to others. And, now as Christmas approaches we are humbled and honored to say thank you for the most precious gift we could ever have asked for from strangers and hope this letter provides a gift of solace. …

We have big dreams for Logan and pray he will continue to be a compassionate, funny and zestful kid who loves God and others. We trust he will make the most of the life he’s been given by our Lord and by your family.

Amen to that. 

 

Art, Autism & Accolades

12/8/16

It happened so quickly.  Jimmy Reagan was playful and happy. Then everything changed. He became sickly, withdrawn, and uncommunicative around his second birthday. One of five children, his challenges became endless and all encompassing for his mother, Peg Schneeman Reagan, and his father, Brian.

Jimmy’s autism diagnosis was shocking. But his health issues were perplexing. Why couldn’t he tolerate so many foods? Why couldn’t he put on weight? What was going on inside his body?

By the time he was a teenager Jimmy’s health problems were so severe his brother Jack worried he was going to die. His parents continued to search for answers and solutions. It took more than 20 years of searching before the answer arrived.

Three years ago a physician at the University of Minnesota diagnosed Jimmy (now 23) with mast cell disease, explaining it had been there for years. An orphan disease, it can only be managed by diet and medications and requires constant surveillance.

The mast cell diagnosis followed an earlier – and amazing – discovery. In 2009 a teacher asked a question that proved life changing for Jimmy and his family. Would he be interested in art? Indeed, he would be.

In the past seven years Jimmy has developed an extensive portfolio of work using various media. Intrigued by Vincent Van Gogh, Jimmy began painting “tick marks” of various colors. After he viewed a Picasso exhibit he shifted from tick marks to brush strokes, using bright colors to paint people, landscapes, and animals. He continues to work with canvas and pastels but also enjoys carving and cutting foam.

Jimmy brings a visual clarity to his work that is absent in other areas of his life, his brother Jack says. Peg concurs. “It’s really astounding. When he works on a painting and puts in a color you know it’s part of his plan.” Moreover, his art offers a glimpse into emotions not easily shared. Peg can always tell when he’s not feeling well because his work changes – or stops.

While she still oversees Jimmy’s health issues, Peg now manages the enterprise they named Through Jimmy’s Eyes. She’s sold some of his original canvases for thousands of dollars. Jimmy’s art adorns walls all over the United States.

Peg has taken it a step further, though. She transforms her son’s images into women’s handbags and scarves, men’s ties and pocket squares, onesies for babies, as well as notecards and coloring pages. Working from their home in Mendota Heights, Minnesota, Peg markets, packages, and sells the goods. One of her sons works on the website. Her other children model the apparel.

The Reagans believe in giving back. “When you’re helping other people sometimes it comes back and helps you,” Peg says. They’ve donated Jimmy’s art to local schools and nonprofits. Most recently, Through Jimmy’s Eyes’ accessories were featured at the University of Minnesota FashionFest. Almost all of the family participated in the annual event that raised more than $300,000 for the University of Minnesota Masonic Children’s Hospital. 

FashionFest guests were fascinated by Jimmy’s work. Ron Johnson, a former Minnesota Gopher and pro football wide receiver, was a FashionFest model. Drawn in by Jimmy’s bow ties, he arranged to wear one in the fashion show. An on air commentator, he plans to wear it during  an upcoming Minnesota Vikings football game.

Jimmy is not a social creature so Peg didn’t expect him to linger at FashionFest. But as the evening wore on he remained with his family and buddy Thomas, sporting a new suit, signature bow tie, and a smile. Natalie Bushaw, FashionFest chair, says, “What I love about that family is the level of support for what Jimmy is doing.”

It’s not been easy. Jimmy’s medical and developmental challenges have weighed on the family. “For our kids there’s been a lot of collateral damage,” Peg says. “The art is a joyful part for us. It helps us to remove some of the sadness because of how sick he is.” She is proud of her children for demonstrating how you can help someone who has had a difficult time.

Jimmy will always require 24/7 care to remain healthy, safe, and engaged. In addition to his parents and siblings he has several young men who offer care and companionship.

But his art illustrates he is much more than what he cannot do. “We consider him an artist who lives with complex autism,” Peg says. Many who purchase his art are unaware of his condition.  And his autism offers him a unique buffer. He can revel in the accolades – and ignore any negative reactions. It’s a freedom most artists most artists don’t enjoy, Peg says.

The Internet has provided great exposure. Jimmy has a large following of accomplished artists. He’s received exciting invitations. His paintings have been displayed in Germany and Italy and will be showcased in Hong Kong next March.

Jimmy’s art has given Peg something else. “There are so many things about Jim’s health I haven’t been able to control,” she says. “I can’t fix his disease. For me the art feels like something I have control over – especially when his disease flares up. I look at his work and it’s happy. That tells me that despite his struggles he is an innately happy, loving human being. And I take great satisfaction in that.”

 To learn more of Jimmy’s story check out Bitter or Better, which  features a story about him. To see more of Jimmy’s work visit throughjimmyseyes.com.