My daughter has narcolepsy: an interview with Susan White

Erin White

Narcolepsy changed everything for Susan White.  When her daughter, Erin, was diagnosed at the age of 24 with this mysterious, incurable disease, Susan was recovering from breast cancer.  She was suddenly thrust into a new world of bills, uncertainty and diagnoses.  Susan shares about the difficulty of caring for an adult child, the challenges of the workplace, and the importance of hope. 

You can listen find the Handle with Care podcast on Apple Podcasts, Google Play, and Spotify. And you can listen to the episode here:

Erin and Susan White

Here are three key takeaways after my conversation with Susan

1. It can be very isolating to have a sick adult child.  Susan talked about how isolated she felt, how co-workers did not know how to reach out.  Susan reminded us of the importance of checking-in.  If you know that a co-worker has something hard going on in their personal life, it can be immensely meaningful to periodically ask how they are doing.  If you are prone to forgetting, and many of us are, take time to write it down in a file do that you can remember to follow-up.  Your intention and care will help to remind them that they are not forgotten.

2. If you have just absorbed hard news, it could be helpful to take a leave of absence.  Susan reflected that stepping away earlier would have allowed her the space to breathe and get things like insurance in order.  Does your company offer this kind of support and space to employees during times of disruption? 

3. If someone on your staff is experiencing a rare disease, or supporting a loved one that is suffering, the expense and the process of information gathering can be immense.  Susan spoke about her Costco breakdown and the many hours she spent researching and participating in support groups.  Your friend or co-worker is likely navigating complex support systems and financial concerns in the midst of work and other life commitments.  Be patient with them.

If you would like more information on the support networks that Susan mentioned, please visit the Narcolepsy Support Network (link below)

Nobody Sent a Card: Jennifer Merrell and Addison’s Disease

Jennifer Merrell

We want people to get better soon, to quickly bounce back from a setback or sickness.  But what if they don’t?  What if the path to recovery is a long one? 

Jennifer Merrell had a mysterious illness.  She grew sicker and sicker, missing work, functioning in a fog of pain and confusion.  In today’s episode, we explore the limitations of FMLA, the challenge to employers, and the painful cost to workplace relationships and ask the question:  what should (and should not!) be done in the case of complicated, lingering disruption? 

You can find the Handle with Care Podcast on Google Play, Spotify, and Apple Podcasts. You can also listen here:

Here are three takeaways that emerge from Jennifer’s story.

1. Is the right answer, in Jennifer’s words, “to cover your ass” as an employee?  I hope not.  Yet, her response makes sense, based on her experiences within a company culture.  Which comes to my first take-away.  Your culture matters!  What kind of a culture have you created?  Culture has to be purposefully shaped during times of stability so you have something to offer in times of disruption.  If not, your employees will be exist in a sort defensive crouch, perpetually covering their collective asses because they don’t believe you have their back.  And your business will never ultimately thrive when your employees don’t believe you have their best interests in mind. 

2. FMLA can be hard.  It is difficult for an employee to have the resources to take six months off of work while still paying expenses.  Some companies have a philanthropic outreach that exists for these situations.  What sort of resources, if any, do you have in place to help employees as they face the prospect of being off of work for an extended amount of time?

3. Disruptive life events are messy.  As Jennifer acknowledged, there were mistakes the company made, there were mistakes that she made.  Both the company and Jennifer were facing tremendous uncertainty as a result of her illness.  But, the company exists as the more powerful partner.  And this means that they way the choose to treat someone, regardless of outcome, has an outsized influence.  Whether you decide to keep someone or let them go, do you make sure that they are being treated with respect and care? 

The Holidays Can Be Hard

This is a special holiday edition of the Handle with Care podcast, in honor of the most wonderful time of the year.  The focus of the podcast is empathy, showing others that we care, that we recognize their pain and make space for it.  And so, I want to take a few moments to give a glimpse as to why this time of year could be particularly hard for people you care about and how you can be a supportive, caring, coworker or friend when they need it most.   

For some, the close of the year is a reminder of the person that is no longer present at the table, the relationship (once warm) that is now cold and estranged.  Or of the dream that simply did not come to be.  On top of that, time with family can be strained and uncomfortable even in the most stable of circumstances, the shared table becoming a place of dread. 

You can find the Handle with Care Podcast on Apple Podcasts, Google Play, and Spotify. You can also listen here:

Here are three tips for the holidays

1. It is not your job to fix someone or control their situation.  This is a particularly American temptation:  we want everyone to be happy and we are profoundly uncomfortable with grief.  This can be further complicated in the workplace, where managers and coworkers want to get someone “back up to speed”.  Yet, the word “bereaved”, sometimes applied to mourners, means to be torn apart.  Mending takes time. Rushing someone through their grief or causing them to stuff their feelings will only backfire in the end.  Alan Wolfelt uses the term “companioning the bereaved”. Being with someone in their sadness and resisting the urge to fix them.  What this looks like in a practical sense:  allow people to skip the holiday party or the gift exchange.  Let them know that their presence would be welcome but you understand if they can’t come.  This could sound something like this:  “The Office Christmas party is next Friday.  I’d love for you to come; you are an important member of our team.  But, I realize that this could be a hard time of year for you.  If you don’t feel like coming, you don’t need to come.  Feel free to make the decision that feels best for you. 

2. Take time to acknowledge their loss.  This might mean saying the name of the person that they have lost:  “I know this is your first Christmas without John; I imagine that could be really hard.”  Or noting the reality of a new life situation:  “This is your first Christmas since the divorce became final, I want you to know that I am with you as you find your way through this new reality.”  Maybe you don’t even know what to say.  What you say is less important than showing that you remember and that you care.  If you feel at a total loss, say something like, “I have no idea what to say; I’ve never been through a divorce but I want you to know that I support you and am here as your friend/coworker etc.

3. Send a card, give an ornament, fill someone’s car up with gas, bake some cookies, or make a playlist of meaningful songs.  Any of these meaningful gestures show that you have not forgotten.

Infertility and IVF: an Interview with Julie McCorkle

Julie McCorkle

How can you support a woman who is going through IVF?  IVF and infertility treatments are expensive, time-consuming, and physically demanding.  In this episode of Handle with Care, Julie McCorkle tells about the long, circuitous path that led her to her son, Declan.  She shares about regular blood draws, stress, vulnerability, and the importance of support networks.    

You can listen to the Handle with Care podcast on Google Play, Spotify, or Apple Podcasts. Or you can listen here:

Three take-aways emerged from my conversation with Julie

1. Julie spoke about how important it was to have individuals in her life that pushed her to “take her space”, to acknowledge the pain and stress of this season.  Like the boss that encouraged her to take time away from DC.  Julie became that person when she encouraged her coworker to go home after the baby shower debacle.  When people are going through stress, they are oftentimes consumed with the needs of the moment.  Perhaps you can be that friend or manager that encourages a friend dealing with infertility to take some necessary space and time; it can mean a lot.

2. Julie was able to be open about her treatments and receive the help and advice of her managers and coworkers because there was a robust culture of trust and respect that was already present in her workplace.  Is this the sort of truly supportive workplace that you are a part of?  If not, what are some proactive steps that you can take to build trust BEFORE hard times come? 

3. IVF and infertility treatments can be tremendously taxing on both a physical and emotional level.  As you can, give flexibility and understanding to the women in your organization going through IVF.  They are managing tremendous stress in their bodies as well as their schedules in addition to doing their daily work for the organization.

Julie and Declan

Going it alone: building a life and a business after your marriage crumbles. An interview with Jennifer Magley

Jennifer Magley

Single parenting can be really hard.  Jennifer Magley talks about the unrelenting days, the economic challenges, and the misperceptions she regularly confronts as a woman of color. Jennifer also shares about rebuilding after loss, resiliency, the secret society of single moms, and how to help someone while still maintaining boundaries.

You can listen to the Handle with Care podcast on Apple Podcasts, Google Play, or Spotify. Or you can listen here:

This important conversation was sponsored by FullStack PEO.  With experience in payroll and benefits, they take care of your people so you can take care of business. 

We are also sponsored by Handle w/ Care HR Solutions.  We all fall down, but empathy coaching through Handle with Care HR Solutions helps you create a community where people survive, stabilize, and thrive after life knocks them down.

I come away with many, many takeaways from my conversation with Jennifer, but I will close with just three.

1. Jennifer said that she needed friends that were just available to listen, friends that sent text messages and were present with her as she worked her way through pain.  Be that friend…but don’t be afraid to communicate your boundaries.  If it is a difficult time for you to talk, communicate your constraint.  “I’m so sorry that you are going through this and I’m glad you reached out.  However, I’m at work right now and can’t talk.  Can I give you a call tomorrow night to hear more?”  A statement like this shows care while still communicating your limitation.

2. Unlike a diagnosis or a death, men and women that go through a divorce often don’t receive an outpouring of support.  Friends and coworkers can be afraid of taking sides.  But, divorce can still turn your world upside down and leave you reeling.  So, if you are a friend or a coworker, consider sending a card, writing a check, or bringing a meal.  It could mean so very much. ‘

3. Disruptive life events are universally hard...and they can be even harder if you are part of a minority.  Talking with Jennifer widened my perspective in an important way.  As a white woman, there is a lot that I am still learning about what it means to be a part of a minority in America.  Jennifer offered us a window into her experience:  the economic hurdles of making less and the social hurdle of people’s assumptions because of her skin color.  I want to keep learning, listening to stories and doing the grinding work of taking a long look at how I make these assumptions and how I help to perpetuate these hurdles in my personal interactions. 

If you want to learn more about Jennifer, check out her work here:

• Jennifer Magley Introductory Video (30 seconds)

•  Recent WISH TV Segment: The One Word You Should Never Use Again (5 minutes)

• Quit Saying Sorry All The Time (LinkedIn) 

• How To Start A Business With No Money (Foundr Magazine)

• Jennifer Magley Website

Parkinson’s Disease: loving and losing my dad. An interview with Jason Berns.

Jason and Don Berns

 How do you support families living under the shadow of a long-term illness?  Parkinson’s disease is relentless and degenerative.  There is no cure.  Jason Berns remembers his dad, Don.  Don was diagnosed with Parkinson’s at the age of 33; Jason was just 8 years old.  Jason reflects on the challenges of living in the shadow of Parkinson’s, the importance of honesty and community, and the power of hope. 

You can find the Handle with Care podcast on Google Play, Spotify, or Apple Podcasts. You can also listen here:

Don, Jason, and Joy Berns

A few take-aways emerge after my conversation with Jason.

1. Community was essential for Jason and his family.  In his words, “We are not called to do life on our own.”  The Berns family benefitted from meals deliveries, from men that stepped in to coach basketball teams, and from friends that have been with them to share joy and sorrow over the years.  If you are a friend or a coworker with someone that is a caregiver, don’t shrink back.  Consider the ways that you can come alongside them with friendship and meaningful gestures?  If you are a caregiver, what support groups are available in your area for both you and for the person you are caring for?  Find people that will pour into you.

2. At your company, it is alright for people to step back from work as a result of life circumstances?  Jason talked about his supportive principals and the way that he now manages his own real estate business.  Jason seeks to model his values of God, family, business and encourages his employees to do likewise.  What values are explicitly or implicitly being modeled in your organization?

3. Faith and hope can be a tremendously important part of what helps men and women survive and thrive in the aftermath disruption.  Even in the midst of a relentless disease, Uncle Don maintained this remarkable grit and hopefulness that transcended personality.  He believed that his failing body was not the final reality, he believed that there was more.  If you are in the midst of a darkness that seems overwhelming, may a glint of hope find and surprise you today.     

Karen, Joy, Don, and Jason Berns

Jason and Laura Berns and their three daughters: Charlotte Caneel, Alexandra Adele, and Elizabeth Dawn

Mercy died, Moses needs surgery: my personal journey with grief

Liesel and Moses

Today, I share a part of my story of loss and struggle.  Elaine Brenner is my guest host and interviewer as I move behind the microphone, telling the truth of my collision with death and surgery. 

Grief can be so totalizing, exhausting.  It made me feel like less of everything:  less of a mother, less of a graduate student, less of a friend and a spouse.  Grief ground away at my marriage and sapped my bandwidth. 

A threat to the health of your child can make you feel powerless, all of life can feel unpredictable and fickle. 

I talk about the friends and family that made a difference:  the Christmas trees that got delivered, the photographs, the overnight hospital stays, and the quilts. 

And as I listened to this episode, I still felt the loss; there is so much more that I would like to tell or share, the ways that Mercy and Moses and pain have impacted and changed me. 

You can find this Handle with Care episode on Google Play, Apple Podcasts, and Spotify. You can also listen here:

But I offer this glimpse into my story, hoping it will help you as you live through your own challenge or help a friend through theirs. 

Mercy Joan and Family

It is a particular thing to really listen to and reflect on your own story.  I can hear some themes that remain the same over the years and others that have shifted and changed with time.  We are always in the process of becoming alongside of our stories.  But for today, here are a few key takeaways that I have, after listening to my story. 

1. When you offer help to someone that is hurting, give specific examples of ways you want to help instead of a vague, “Just let me know if you need anything.”  This statement puts the pressure of imagining tasks and organizing logistics back on the grieving person and sets you up for failure if they ask you to do something that you can’t or don’t want to deliver on.

2. Be purposeful and careful with your language around purpose and meaning, especially well-meaning clichés.  Take a moment to pause before you speak.  Trite turns of phrase are rarely comforting and often hurtful.  Instead, offer a hug or a sincere, “I am so sorry you are going through this.”  You don’t have to make meaning for a person that is hurting.

3. A real fear for parents of dead children is that their child will be forgotten.  Take time to write down important dates like birthdays.  Remember the parents around Mother’s or Father’s Day.  Take time to say the child’s name or ask the parent to share a memory.  These acts of attention and intention are so meaningful.

Mimi, Moses, and Mama

Childhood Disruption, Part 3: An Interview with Magnus Mertes

Magnus visits with Moses, post-surgery

Disruptive life events linger; they cast a long shadow.  Years afterwards, you can still be surprised by sadness or fear.

 Magnus Mertes knows about living with pain and uncertainty; his sister died when he was just one year old and his younger brother has needed multiple heart surgeries. 

 In this last episode of our series on childhood disruption, Magnus shares about how pain can bring us closer to people, what kids really want from their parents, and how a note or a song can be a powerful gift to those experiencing sadness. 

You can find the Handle with Care episode on Apple Podcasts, Google Play, and Spotify. You can also click here to listen to the full episode:

Brothers

Today, we finish our three-week miniseries on childhood disruption.  Over the last two episodes, we have considered how disruption particularly affects children.  By extension, we are also talking about the adults that care for them.  If a parent goes through disruption, whether that is a divorce or a move or a death, they are also interpreting and explaining and shepherding their child.  I know, from my own story, how important and exhausting this role can be. 

I hope that these reflections help in three potential ways.

1. They help you better companion the children in your life that have experienced or are right now experiencing disruption.  If you don’t remember, childhood can be hard.  There are scraped knees and neighborhood bullies.  Someone is always deciding when you go to bed and what you have to eat for dinner.  Now, factor in a divorce or a cancer diagnosis.  It can all feel pretty overwhelming, for both kids and adults.

2. These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.  These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.

3. Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now. 

Magnus, Papa, Mama, Mercy, and Ada

Here are three take-aways that I have after my conversation with Magnus

1.  Magnus reflected that sometimes, kids say that nothing is wrong when bad things happen.  Parents, in response, will just leave them alone.  In Magnus’ words, “what they mostly need is to engage and be comforted.”  This is a good reminder, for both kids and adults, that people crave the support of relationship and community when disruption comes. 

2. Don’t overlook the pain and the process of young children.  Magnus was only seventeen months old when Mercy died.  And he was in preschool when Moses was born.  In the midst of our overwhelming pain, it would have been all too easy to overlook Magnus, to think that he was too young to process what was going on…to just hope that he would be fine. Yet, these experiences have profoundly shaped him.

3. Music can be a great form of comfort for adults and children.  There have been times where the fears were so big and words found their limits.  During those times, we found that it was really helpful to have a playlist of meaningful songs that he could listen to that helped to ground and reassure him. 

Magnus in the wild

Childhood Disruption, Part 2: An Interview with Jemima Mertes

Jemima visits her sister, Mercy Joan

A hug, a nap, a kind word:  each of these actions can be really helpful for those that are going through hard times. 

Jemima Mertes, age 6, shares these insights and more on this episode of Handle with Care.  Jemima is no stranger to sadness:  her older sister died and her younger brother has undergone multiple open heart surgeries. 

As she speaks about her safe place, breathing techniques, and how to remember well, Jemima offers wisdom for anyone walking with a child through tumult as well as for those that support parents during times of disruption.

You can listen to the Handle with Care: Empathy at Work podcast on Spotify, Apple Podcasts, and Google Play. You can also click here to listen:   

Joyful Jemima

A few reflections on my time with Jemima

1. There is great power to a tasty snack, a warm hug, and a good night’s rest for both adults and children. 

2. Providing children with a safe spot can help with unruly emotions.  Putty can be a great resource; Jemima found particular comfort in a tactile expression for her large emotions.  There are also companies like Generation Mindful that provide Time-In Toolkits.  I am including their information and a link to our favorite putty in the show notes. 

3. When you are feeling scared and overwhelmed, take time to breathe.  Jemima demonstrated a few techniques in our podcast.  I love that they are teaching these techniques in school…and it is great insight for adults as well.  Deep, rhythmic breathing communicates safety to your body and helps to stem the cascade of stress responses in the body. 

Watching movies with Moses in the hospital

Here are links to the resources mentioned in today’s podcast

1. Crazy Aaron’s Thinking Putty: https://puttyworld.com

2. Generation Mindful: https://www.genmindful.com/?rfsn=654637.ab95e

Childhood Disruption, Part 1: An Interview with Ada June Mertes

Ada June and Mercy Joan

When tragedy impacts in the life of a child, it can be difficult for adults to know how to help.  Ada June, age 11, had a sister die and a brother undergo multiple open-heart surgeries.  She shares about death, the power of remembering, and the importance of being able to self-advocate in the midst of pain.  There is wisdom here for anyone who is walking with a child through sadness as well as for those that support parents during times of disruption.    

You can listen to the Handle with Care: Empathy at Work podcast on Spotify, Google Play, and Apple Podcasts OR you can listen here:

Wistful Ada

It is my hope that these reflections from Ada June help in three potential ways.

1. They help you better companion the children in your life that have experienced or are right now experiencing disruption.  If you don’t remember, childhood can be hard.  There are scraped knees and neighborhood bullies.  Someone is always deciding when you go to bed and what you have to eat for dinner.  Now, factor in a divorce or a cancer diagnosis.  It can all feel pretty overwhelming, for both kids and adults.

2. These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.  These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.

3. Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now. 

Mama, Papa, Ada, and Magnus with Moses in Riley Hospital

Here are three reflections on childhood disruption from my interview with my daughter, Ada June Mertes.

1. It is meaningful to remember with someone that is grieving.  Ada talked about the pain of having to explain, again and again, about Mercy’s death or Moses’ surgeries.  As you remember with a child, resist the urge to make comparisons or rush them too quickly to a resolution.

2. It is OK to cry, it is OK to be fragile, it is OK to need a hug, even years after the death or the diagnosis.  There is no set timeline for grief. 

3. Kids (and grown-ups), learn, in the words of Ada, to self-advocate.  Are you feeling overwhelmed?  Let someone know.  Would you benefit from a break from your homework or class?  Let someone know.  Do you need a hug or a kind word, don’t be afraid to ask.  There are people who can and will help you.  And to all of the school guidance counselors and teachers and bus drivers that have cared well for my children over these tear-stained years, let me take a moment to say thank you.  Thank you for making the space for my children to hold their grief instead of hide from it.

Smiling girl

Suicide, cancer, and life after loss: an interview with Jasmin Jenkins

Jasmin Jenkins, Founder of Fall Up

Jasmin is no stranger to loss:  her mother died of ovarian cancer while Jasmin was in high school.  A few years later, Jasmin’s brother, Rory, took his life.  She shares deep wisdom from her journey towards healing for those that have been affected by suicide and loss and speaks on the invitations of grief.  Jasmin is the founder of Fall Up, a community driven platform that brings people together to navigate the spectrum of grief.  She believes that your grief is as unique as your fingerprint and that through exploring the invitations within your grief, there is greater presence and joy to be found in this one, precious life -- for all.

You can listen to this episode of the Handle with Care podcast on Google Play, Spotify, or Apple Podcasts. Or just click the link here:

Jasmin and Rory in autumn

Here are three reflections from my conversation with Jasmin

1. Presence is so important.  As Jasmin said, in the aftermath of suicide, there is no way to take away the pain.  But showing up, being willing to hold space and be with someone that is grieving, that speaks volumes. 

2. Avoid phrases like, “It was his time” or “He is in a better place”.  This flattens the experience of a grieving person, reducing it to an easy cliché.  Instead of trite phrases, consider some of the meaningful gestures that Jasmin mentioned:  send a card, plant a tree, visit the grave of the deceased.  These are gestures that don’t cost much in time or money, but they convey intention and meaningful care.  Perhaps you know someone who is no longer in the acute stages of grief; these gestures still matter.  As a friend or coworker, you can show support by remembering birthdays of those that died or significant anniversaries with gestures like a cake or a kind word. 

3. If you are in the midst of grief, consider the four invitations that Jasmin described:  the invitation to find your sacred pause, to feel your breath, to feel your emotions, and, finally, to heal.  You can find more information on Jasmin, her work, and her writings below…

Jasmin and Rory, older siblings

If you would like to learn more about Jasmin and her work through Fall Up, Quilt, and the four invitations of grief, here are some resources:

Fall up website

The Four Invitations Article

Instagram

Death, job loss, grief brain, and gratitude: an interview with Katie Huey

Katie Huey

In the span of a few months, Katie Huey’s father died, her husband lost his job, and she also found herself in a work transition.  Katie’s story begs the question:  when it seems like everything is crashing down, what can you do?  Can you learn to cultivate gratitude, even in the midst of disruption?  What is the difference between self-care and self-nurture?  And what should you expect from a work environment when things fall apart? 

You can find her interview on Google Play, Spotify, or Apple Podcasts. Or just click on this link…

Katie enjoys hiking

Katie had a range of important insights to offer, but I want to pull out three reflections in particular from this conversation.

1. If you are going through a hard season, Katie had some helpful suggestions.  You could try cultivating gratitude by noticing something, each day, to be grateful for.  Perhaps try charting the intensity of your grief daily so you can notice a trajectory over time.  You could also ask the question, how am I practicing self-nurture today?

2. Katie realized that she didn’t have to share the fullness of her grief journey with everyone.  When confronted with unsympathetic people or overwhelming situations at work, Katie chose to opt out of activities or let people know she wasn’t comfortable sharing.  Perhaps this could be helpful for you if you find yourself in situations that don’t feel safe at work.  And, perhaps a point 2b, if you are a co-worker, your responses and your non-responses powerfully affect whether people feel safe.  A blank stare is not a neutral response; it can make people feel unseen and unwilling to share.

3. As you are interviewing for jobs, ask the interviewer, what do you do to support employees that are going through hard times?  If you are an employer, you should ask this question as well.  For Katie, a lack of support was a big part of why she left her job.  What are you doing to support your people during disruption?  If you don’t know or if you want to get better, contact me at Handle with Care, HR Solutions.  Information about our offerings can be found at https://www.lieselmertes.com/services .  As a workplace empathy consultant, my goal is to empower workplaces to give meaningful support during these times of disruption.

Katie’s family

If you want to read more about Katie and her work on gratitude, here are some links to her compelling work.

1)  This is the Medium article she referenced in the podcast:  Medium Article

2)  For those navigating tough stuff:  Here's to the Ones

3)  Things we try to cover

4)  Isn't life grand

I have breast cancer: an interview with Sheri Alexander

Liesel Mertes and Sheri Alexander at Village Recording Studios

Sheri Alexander works as the Chief Strategy Officer at Gregory & Appel Insurance…and she received news of her breast cancer on her way into a client meeting.  In this episode, Sheri tells her story of managing the demands of work, marriage, and parenting in the midst of fighting cancer.  Sheri shares her coping mechanism of “putting things on the shelf”, imparts a host of helpful local resources, and reflects on how she now gives support in the workplace as a result of her diagnosis. 

The Handle with Care podcast is available on Apple Podcasts, Google Play, and Spotify. You can also listen here:

Sheri celebrates 16 years

Three reflections came as a result of my conversation with Sheri

1. If you or someone you care about is dealing with a cancer diagnosis, look for support organizations in your community.  If you live in Central Indiana, Little Red Door Cancer agency can help those in need of financial assistance with things like getting to appointments, wigs, and prosthetics.  The Cancer Support Community runs a center with support classes, cooking demonstrations, and a yoga studio.  The Komen Center hosts events and donates portions of every dollar raised.  Resources mentioned:

   • Little Red Door Cancer Agency:  https://www.littlereddoor.org

   • Komen of Central Indiana:  https://komencentralindiana.org/

   • Cancer Support Community of Central Indiana:  http://cancersupportindy.org/

2. As Sheri put it, don’t go radio silent.  Do something.  Perhaps you worry about what to do or say to someone who is going through cancer.  You don’t have to have all the answers, a card or a note, some flowers, or simply a statement like, “I am sorry that you are going through this” communicates a great deal of care. 

3. As Sheri worked throughout her cancer treatment, it was helpful for her to “put things on the shelf” until she had to time to process them with her family and her support network.  She also worked through some of those emotions on the way to work. This is one way that people deal with difficult emotions.  If someone does not want to talk extensively about their cancer during a particular day, they may be putting those emotions on the shelf for the time being.  If that is the case, allow them the space to not discuss their cancer. 

Enjoying the lake

Single parenting, a medical emergency, and inclusivity: an interview with Bre Sprague

Walker at the hospital

How supportive and inclusive is your organization to the needs of single parents?  As her son fought for his life, Bre got a phone call from her company that changed everything.  She shares her reflections on empathy, gendered expectations, and the particular challenges facing single parents.

You can listen to the entirety of the interview here. The Handle with Care podcast can also be found on Apple Podcasts, Spotify, and Google Play.

Bre Sprague

Three lessons or perhaps questions emerge from my conversation with Bre.

1. How inclusive and accommodating is your company to the needs of single parents?  If you don’t know, ask the single parents that work with you.  Create a focus group, send out a confidential survey.  Then consider, what can you offer to show support to single parents?  By offering support systems like flexible working arrangements and results-oriented hours, you can give essential support as well as differentiate yourself as an employer of choice. 

2. Conversations with people in the midst of disruptive life events really matter, do you feel equipped to have those conversations?  As Bre was sitting at the bedside of her sick son, she had a phone call that changed her work trajectory.  Bre’s life was upended and the company had to absorb the cost of recruiting and retraining her replacement.  This could have been avoided.  What if that person, on the other end of the line, had been able to offer basic support and empathy?  If you would like further training for yourself or your staff in how to have these conversations well, consider engaging a workplace empathy consultant. Information can be found in the contact section of lieselmertes.com 

3. Vulnerability can be a way of bringing clarity to a situation. For Bre, that looked like letting coworkers know that her grandmother died and that she was compromised as a result. Are you a part of a culture that allows people to feel comfortable expressing their emotional location? Do they believe that they will be met with empathy when they are vulnerable? If not, what can you do to bring more of this clarity and open communication to the workplace? If you are in leadership, perhaps this starts with sharing some of your own need for empathy and support.

Walker Sprague

Here are a few other tidbits from our conversation…

 Single parents are an asset, not a liability

14:36 - Bre Sprague

And you know for me when I look back at everything and I talk to other single mothers and other single parents and single fathers who do it you just find a way to make it work. You stretch the dollar you, you find a way to make sure that the needs of your child are taking care of and that's an asset that's thinking outside the box that's being able to go oh wow like let's look at this from a different perspective.

 Yeah, I really feel that a single parent male or female is a huge asset or a single caregiver because there are a lot of people who are taking care of parents who are having to live with them now. And you know as a single parent that that asset and what I say that you know you're showing up you're, you're doing what needs to get done you're structured you're scheduled and I feel like that and I'm not saying that every single parent or every employee like that is like that be great if everybody was but you know it, it isn't a huge asset to any organization when you have a person who is driven to take care of the needs beyond themselves.

There can be a different standard for men vs. women in regards to time off

18:36 - Bre Sprague

I love men and this is not meaning to be a bash on men. A lot of it is our society and still how programmed we are. And the, the double standards that do exist against women in the workplace. You know I, I know of fathers who coached baseball teams who have to leave work early to go and coach baseball and it's like wow that's great. He's coaching the baseball team and that same excitement and that same you know, you know really applauding and cheering somebody on as a woman needs to be there because all too often it's not. And, and if we want more women to be able to step up to the table and roles of leadership, we need to create cultures where you know what it's OK, you're a mom. That's part of who you are. You know it's OK.

You know your kid got sick and isn't it great that we now have technology that you can work from home for a day if you need to work from home you know or that you know you can do the companies that do unlimited PTO as long as you're getting your work done.  You know your kid got sick and isn't it great that we now have technology that you can work from home for a day if you need to work from home you know or that you know you can do the companies that do unlimited PTO as long as you're getting your work done.  And I think that's the key factor is that moving away from cultures that are micromanaging the old way of thinking to saying how do we allow somebody to show up as their full self

Happy, valued employees stay and contribute

24:29 - Bre Sprague

I am a fan of your mission of your work because people we've heard over and over again people don't leave jobs they leave poor management and they leave toxic cultures and all too often people will make a quick lateral transfer and they're not making any more money but the environment that they're in has been so toxic that they cannot stay any longer.

And I'm a huge fan of what you are trying to accomplish and what you are accomplishing because when a person can show up as their whole self in a workplace happy employees stay happy employees are productive and that's what we really need to try to cultivate more of.

Bre and her son, Walker

What about the father? Matt & Jenny Kistler share on miscarriage, disappointment & stillbirth

The Kistler family…and lions

Miscarriage is all too common and it is difficult to talk about.  If care is given, it is usually directed towards a grieving mother.  Yet, what about the father?  When men are overlooked in the grieving process, what is the cost?  How can you give meaningful support to both parents?  In part two of the series on miscarriage and infant loss, Matt and Jenny Kistler share their story.  

You can listen to the entirety of our conversation here. The Handle with Care podcast can also be found on Apple Podcasts, Google Play, and Spotify.

Here are three thoughts at the close of this second conversation on miscarriage and infant loss.

1. Not all miscarriages are the same; there can be a wide variance based on the timing of the loss.  Regardless of timing, do not reduce the loss as you talk with a grieving parent.  Especially avoid statements that begin with words like, “At least…”  These phrases minimize the impact of the loss.

2. If you know a couple that has experienced miscarriage or infant loss, have you taken time to reach out to both the mother and the father?  Matt talked about being overlooked as care focused on Jenny.  Make time to communicate care to a grieving father, to ask him how he is doing and to acknowledge that he shares in this loss. 

3. Saying “I’m sorry” is a good response to someone who is experiencing loss. As Jenny said, it allowed her to chance to talk if she wanted to or to just acknowledge the sentiment with a thank you. This expression of care also let her know that she was not along in the midst of her pain.

2018 Christmas card photo

Here are a few additional excerpts from our conversation

How to reach out to a grieving father

 18:40 - Matt Kistler

You I just think it's as simple as grabbing a cup of coffee or a beer or whatever it just depends on how well you know, I mean, I know someone really well, it's going to impact the way that I approach situation. But I think just, that engaging and just saying, “How's your wife doing? How the kids?” is going to sound right.

Like, “how are you doing? Are you impacted like, like you held a baby, that was a very traumatic issue. What are your thoughts?” I mean it takes the right person in the right relationship to do that, but I definitely think that there's a, there's a place for it. There's an appropriate timing for it and just, I think that conversation might have been 10 minutes long, but that's just enough to like, that person to say, “Hey I've been there, I know what it's like ,if you need someone to call, that’s great, but just know I like I've been there ,I see it. I identify with it.”

Avoiding bitterness

29:17 - Jenny Kistler

I have seen with friends and acquaintances…is a tendency amongst women to become bitter when friends and people they know become pregnant if they've had a loss and they're not pregnant again. Yet again, having multiple losses and obviously that also can sometimes go along with infertility, not always. Sometimes it's just loss and my advice there would be to try to find joy for others no letting that bitterness grow. You have had a loss and you see someone else. It's just focusing inward and away and it just causes destruction on yourself you know, you, it hurts your relationship. I've heard stories of women that just get so bent out of shape because so-and-so shared that they were pregnant. I just thought that was so insensitive to them because they just had a miscarriage and, obviously, this is my opinion. But the problem with that is that you are unable to step outside of your own pain and see that this person's joy really is unrelated to your pain and you all have to find a way to be happy for others when they are given joy.

Miscarriage, stillbirth, and post-traumatic growth. An interview with Rachel Pritz

Rachel and family

In 21st century America, it is easy to assume that every pregnancy results in a happy, healthy baby.  Yet, as many as one in four pregnancies ends in miscarriage.  The path through infant loss is complex; how can you support someone well?  In the first of a two-part series, Rachel Pritz discusses miscarriage, stillbirth, and post-traumatic growth.

You can listen to the entirety of our conversation here. The Handle with Care podcast can also be found on Apple Podcasts, Google Play, and Spotify.

Here are three action points that emerge from Rachel’s story

1. Don’t forget…and resist the urge to minimize the pain.  Rachel said that one of the hardest things was the feeling that people had forgotten.  Bring the topic up, bring the baby up in conversation.  Earlier this year, I was meeting with an old friend for coffee.  I hadn’t even taken a sip from my oat-milk chai tea latte when he said, “I just want you to know that I remember Mercy (my daughter that died) every year at this time.” His kind words were so meaningful.  Be a person that remembers the loss of a child; it means so much to the parents. 

2. Treat people as though they are going through the worst day of their lives.  This has become a guiding principle for Rachel, it keeps her from honking her horn and helps as she cultivates empathy and it is probably a good nugget of wisdom for all of us.

3. Grief reduces people; Rachel felt like a different version of herself.  In that season of acute loss, the witty, upbeat nurse who fired off zingers was gone.  If you are going through the loss of a miscarriage, you might experience this sense of dislocation.  If you are a support person, know that these changes can happen…and resist the urge to force someone to move too quickly through grief, to just snap back to being happy or normal.  There is a wide range of what grief can look like.  Instead, in Rachel’s words, seek to be a soft-landing place for those experiencing loss.

Rachel Pritz Coaching can be found online

Here are a few other excerpts of insight from our conversation…

Sometimes, caring for someone means not talking about the loss of a child. I know, you might be thinking, isn’t that in contrast to what you (and Rachel) said above?  Yes, grief can be messy like that…

6:45-  Rachel Pritz

 I wouldn't say that we really had a lot of discussions around it. I was much more private with with that experience. And just, in that time in my life, I was a much more private person. I didn't share a whole lot at work. I felt like, at that time, that work in life should you know maintain some certain boundaries and be separate. So did it.

- Liesel Mertes

Did it even feel in some ways like care to you to not have them press more deeply into that?

- Rachel Pritz

It did at that time in my life for sure. I mean, I felt like it was it was what I needed was to kind of not press and kind of move forward with with life.

You don’t have to know everything to say; just showing up is meaningful.

12:04-  Rachel Pritz

So I had a lot of people back that came and visited. It's interesting, because I had three people at work that I was really close with my...Actually, before this all happened, I wouldn't say I was really close with, I was close to them but they were the three that kind of came out of the woodwork and came to my rescue and a lot of ways and just came and listened to me talk and they didn't know what to say they didn't have that experience so they didn't really truly understand but they just listened and that was huge. And to this day they're still people that I'm very close to.

It can be helpful to have a point person that lets others at work know about the miscarriage

15:02-  Rachel Pritz

Yes. So I actually had a really a friend that had gone through miscarriages so had some experience there and so she called me and asked if it would be okay for her to make sure that everybody knew, including her anesthesiology group, because we were all pretty close with them and sometimes people come and go and health care you know we work for a few days and they were off for weeks and we don't catch up on what's been happening. And so she made sure that everybody knew what had happened. She asked my permission and I said yes I would love that. So everybody was aware. So I didn't have you know some of those comments or like, Oh did you have the baby? Like people would lose track of time, thinking I was full term and that's why I was off for that amount of time. And so that was really helpful. And I still think about her a lot. That was really, I really appreciated that she had the foresight to think of that because I wouldn't have known at the time to ask for that.

For more information on Rachel’s coaching business, visit rachelpritz.com

Divorce, depression, and alcohol: an interview with David Mills

David Mills

This week, we talk about divorce, single parenting, depression and planning to kill yourself.  We talk about addiction, alcohol and the courage it takes to get sober.  David Mills offers deep wisdom to men and women that are in the midst of dark times as well as to those that support them. 

You can listen to the entirety of our conversation here. The Handle with Care podcast can also be found on iTunes, Google Play, and Spotify.

Here are three key takeaways from my conversation with David.

1. Offer to help with the logistics of a disruptive transition.  David said, again and again, how much it would have helped him to have someone help him make a plan, a plan about vocation or attorneys or mediation.  The logistical burden of change and loss can feel paralyzing.  When someone you care about is going through something hard, don’t just make vague comments of support like, “if you need anything, call”.  Can you offer your time and expertise to help with steps moving forward?

2. How central is alcohol to your events or your after-hours socializing?  What sort of an atmosphere does this create for people that don’t drink or that are trying to stay sober?  Have you ever paused the ask the question?

3. Be aware of the language you use when talking about divorce.  David recounted how it wasn’t helpful to have people speak poorly of Mary, that only complicated his situation.  He also bristled under well-meaning comments about how everything would be OK.  Before you jump in conversationally, take a moment to pause and consider your words.  Maybe now you are wondering, well, what can I say?  One of the safest, most meaningful comments you can offer to someone in a hard time is this:  “I am so sorry; I imagine this must feel really hard right now.”

Here are a few other highlights from our conversation

Drinking does not have to be at the core of social functions

14:41-  David Mills

Yeah. You know I've always been a drinker. And I saw on college and grad school and then as an adult I think it's really one of the one of the I truly think most corrosive things about our society is the way that like you're taught as adults not like you can drink but like drinking is a necessary part of a social function. Drinking is a necessary part of bonding which is just it does not have to be that way. So.

In hard times, find something that you want to create

25:02-  David Mills

Helping me lean into my hobbies would have been really helpful or like asking me the question like like, don't think about work, don't think about this in the context of being a father. Don't think about this the context of anything except like what's one thing that you would like to become really good at. You either know nothing about or you know a little bit about and you would like to know more about and then help me pursue that, I like, just something to focus my attention towards creating anything would have been really helpful in that moment.

Look at the trauma

26:46-  David Mills

I guess I would tell myself to deal with the trauma I guess I would tell myself the deal with the trauma and that it was gonna be OK.  I think if I would've done that earlier I would have been better in every aspect of my life. And the more I do it, the better I am, even on darker days. So, yeah, there's a lot that I didn't face as soon as I wish I would.

Breathe

27:30-  David Mills

There is going to be a lot of moments over the next year where you feel like you don't have the capacity or the time to breathe. There is no single decision that you make that is going to be worse because you took five seconds to breathe.

 Men need to become comfortable and in control of their feelings

28:26-  David Mills

 And I this is maybe a bit more gendered, but I do think that particularly cis gender men in our country are generally pretty not in control of their emotions a lot of the time. And we see that play out. And in the micro aggressions which tear marriages apart, we see that play out in the political landscape. We see that play out and social policies that have children ripped away from their parents and put in cages. We see it all over the place. This truly toxic masculinity. So, if there's anything that I can do to model a different way of what it means to be quote a man and in this society for Atticus, that's really important to me and it's at the heart of that is teaching him to be fully comfortable with what he's feeling able to name it able to name when he needs space from others to process it, like one of my proudest moments as a father when Atticus was really upset and he said I just really think I need five minutes alone in my room and I was like, Dude awesome I'm that person. But I want to model through this process. I've, I've learned that I truly want to model what it means to be a man who is in control of your emotions because I drank I became an alcoholic because I wasn't in control of my emotions so many of the bad decisions that I made in life have been because I wasn't in control of my emotions so honor what you're feeling but also it doesn't have to control you.

My father died: lessons in navigating loss and creating cultures of caring. An interview with Gale Nichols

How can you create cadences of care within your organization?  What does it look like to have everyone invested, actively supporting hurting employees?  Gale Nichols works at the Kelley School of Business and she played an important part in my own story of loss.  Gale shares about the death of her father as well as how she created a culture of proactive care in her role as the Director of Student Services and Global Programs. 

You can listen to the entirety of our conversation below. The Handle with Care: Empathy at Work podcast can also be found on iTunes, Spotify, and Google Play.

Gale Nichols. Kelley School of Business at IU, Director of Student Services and Global Programs

Three primary lessons emerged from my conversation with Gale

1. Learn to listen and ask good questions.  Resist the urge to first offer a quick answer or the solution that worked within your own story.  In the words of Steiner’s haiku:  tell less and ask more. Your advice is not as good as you think it is.  You can practice this question asking now, even before a disruptive life event affects someone close to you.  In your next social interaction, resolve to talk less and listen more.  Pay attention to how much air time you take up during the encounter.  You will build the skill of listening and question asking through practice. 

2. Take an honest look at how connected your organization is in providing care.  What are your current support systems?  At the Kelley School, an interconnected web of stakeholders, from the Dean to the professors to the office of Student services exist to help students thrive.  How about in your company?  In your community or place of worship?  How are people cared for?  Who is falling through the cracks?  Are there processes in place?  Is care and empathy seen as the responsibility of just one individual or department?  If you don’t know, take time to ask.  Or bring on a professional.  In my role as a workplace empathy consultant, I conduct interviews, administer surveys, and assess support systems in order to to give you a comprehensive picture of your existing cadences of care.

3. Recognize that not everyone’s path through grief will look the same.  As Gale said, there are ups and downs, the person who seemed fine in the morning could be weeping by noontime.  If you are walking through something hard, be patient with these upheavals, allow yourself to feel the big emotions.  And if you are a caregiver or a manager or a friend, in the words of Gale, “go with the flow and meet them where they are”

Gale in Japan

Here are some additional excerpts from our conversation:

Create spaces for hurting people to support one another

19:40- Gale Nichols

One thing that I'm really pleased about and proud of that we've launched here in the MBA program this year. It's called Kelleys helping Kelleys and it's a kind of support group. It's student facilitated, just for the students who are going through a family illness or have experienced a death in their family or their close circle. And, at any given point in time, we have six or eight students something like that who are participating in this group. They meet every other week and they're just helping each other and talking about what's going on. What they need. They're checking in on each other in between meetings and they've really valued that connection. The genesis of that group was this:  for whatever reason, back in the fall, I had what seemed like an unusually large number of students coming in to tell me about difficult situations that family members who were seriously ill or family members who had died recently. And the students were often saying, I don't want to tell any of my classmates about it. I don't want to burden them. Everybody's so busy or they wouldn't understand or what have you. But yet, they really needed somebody to talk to, somebody who was in the same circumstances with the courses, with the job search, with all of the things that MBA students are going through. And I wondered what it might be like to form a support group of students who are going through or have recently gone through these same kinds of situations and I tossed the idea out to some of these students and they said I would love that. And it's taken on it's taken off and I really don't have any role in it at this point except for arranging a room for them…

…Yeah. I wonder what it would be like in a workplace to organize such a group to have that energy. Yeah yeah. HR or some function, sort of organizes it and creates the space for it but doesn't manage it, doesn't facilitate it, just lets people know about it. Yeah. And if they care to join the group, great, if not: great. I see how it's helped the students. And it doesn't need a formal facilitator or a psychologist or anybody to be part of it.

You can’t fix every problem

27:13 - Gale Nichols

The biggest challenge is, this is, this is, just an issue within myself. I want to fix everything and learning that I can't fix everything has been harder than I might have anticipated. I can't make their loved one healthy. I can't do their classwork for them. I can't make decisions for them about whether they should take time off from school to go be with their loved one or stay here and reduce their course load so they can free up some time. I just, I can't solve every problem and I don't know how to solve every problem.

Gale in Israel

I had a breakdown last night: working while anxious and overwhelmed. An interview with Drew Kincius

Responsibilities at work, stress about money, anxiety manifested in physical ailments, what happens when the pressure reaches a boiling point?  Drew Kincius talks about the scary night when it all became too much, when he tried to walk into traffic. His journey towards stability, with the help of his community, offers perspective to people on the edge of overwhelm.  If you work with or care for someone coping with anxiety, this episode is for you.   

You can listen to the entirety of the episode here. The Handle with Care podcast can also be found on iTunes, Spotify, and Google Play. Also, if you like what you hear, please take a moment to rate and review the podcast; it helps other people find us!

Interview guest, Drew Kincius

Here are three take-aways from Drew’s story, both for those that are struggling with feeling that it is all too much and for the coworkers, friends, and family that surround them. 

1. Reach out relationally.  If you see someone struggling, give them a call, grab a meal.  And here are some helpful pointers for the interaction.  Don’t just ask a vague, “How are your doing?” question; you will get a vague answer.  And, as Drew said, maybe don’t start out the interaction with making it all about their problem.  Connect on a human level.  Perhaps ease into the conversation, maybe share a story of your own struggle or weakness, making a way for them to be vulnerable as well. 

2. If you are a support person, whether at work or in a personal context, be patient and be an advocate for the affected individual.  It is tempting to prescribe a path for healing, to try to force someone to follow your suggestion.  For Drew, it was important to feel ownership and agency as he chose his journey towards healing.  Beware of pushing too hard. 

3. If you are feeling on the brink, like it is all just too much, I offer you Drew’s words of insight:  if you are struggling with feeling hopeless and overwhelmed, there is no shame in asking for help.  Who are the safe people in your world that you can share with?  Beyond your social sphere, there are resources available.  Many workplaces offer you access to heavily subsidized or free counseling through the Employee Assistance Program, or EAP.  You may have forgotten about your EAP, or the info is buried in your employee on-boarding packet.  So, I encourage you to ask your HR representative about access.  These services are completely confidential and can be so very helpful. 

Here are a few other highlights from our conversation:

There can be a division between work and home life

13:48 - Drew Kincius

Yeah, and I mean leading up to that, then there were moments when I would just sit in bed like lay in bed and just be really really sad. And that happened a lot after that too. And because I was in a very public facing role, I didn't feel comfortable with, I would shut down when I got home. Which is really unfair to my family. But I could be open and vulnerable with them. And so, at a certain point I decided that I need to be open and vulnerable with everyone else and not just fall apart when I get home. Because, once again, that's not fair to the people that I care about to say, oh I'm on during the day, and then forever, you know when I get home, then I just, I'm trash. I just shut down.

Be proactive about your mental health

14:39 - Drew Kincius

I hadn't really been to a counselor in three or four years, so that was a moment where I said, oh yeah. Just like with your physical health, maybe your mental health should be something that you proactively consider instead of just being reactive if you're having a massive heart attack and you're being reactive. There's probably habits that have led to that and that's, that's what it felt like, not to create some silly phrase, but it was, it was, it was like I had some sort of attack right but it was more about my soul and it was more about my emotions and it was like physically something locking up. So from there on, I was just a lot more open.

Don’t ask vague questions

16:52 - Drew Kincius

If you walk up to somebody and say, How are you? They're going to say, "Oh, I'm fine" or, "Oh I'm great." But, but they're not universally sad or happy or whatever the phrase is. And so, when you ask a question like that of a question you're going to get a vague answer. And so, that's really helped me to say things like, when a man is, somebody, what's the best thing that's happened today? Or, if I know someone is struggling with something, just ask a question like, how are things, not how are things, but, but hey I heard about a loss in your family or or just just saying, I'm here for you if you need me. But not setting that, not setting an expectation of saying I have to help you. And if you don't call on me I'm gonna be upset.

If you are a support person, call for back-up

20:49 - Drew Kincius

Call for backup. And she did that. I mean, there was a point when I came home from work and my parents and my sister were randomly at my house because Colleen had talked to them and said sometimes, something, something's going on here, something's not right. And the biggest takeaway from that is is they, they came over and said, we are here to help but we're not going to tell you what you have to do. But you need to understand that, that you that this has to happen sooner than later. Because I have so I had so many distractions in my life. And I think that's why I stayed so busy, because in the dead space is when you really started to think about what's going on…

And so, so when I say ask for backup, I mean you never know if somebody doesn't feel comfortable with talking to you about what some their issues are. To have other people reach out. And it can be something as simple as just a quick phone call and just saying, hey what's up. And not starting it with, hey I've heard specifically that in this exact instance you are struggling right now. That's a lot to throw on someone. They get defensive. But if you just call and say, hey what's going on? And if you, if you mentioned something that you're struggling with, something it's not going super wrong in your life. The likeliness of somebody else opening up about that same thing is gonna be a lot stronger because they there's empathy there.

Practice patience

23:21 - Drew Kincius

And so patience is very important too, because I'm sure if my family had a choice or if my wife had a choice, in that moment, they would have just physically taken me and put me in a car and just went to someone to talk out my feelings. But once again, they'd be them mandating that for me and I would always say, well you made me do this and you made me do that. Which is, I'm not saying that's the right thing for me to do, but most human beings, although it comes from a good place, they treat that as, as, as aggressive or some sort of attack or something like that.

My husband had a brain injury: the challenge of long-term disability. An interview with Bess Malek-Maiorano

In a moment, everything can change.  A traumatic brain injury dramatically altered life for Baher Malek, a software designer, and his family.  Bess Malek-Maiorano speaks about the exhaustion of providing long-term care, the shock of injury, and the challenge of embracing long-term disability.  Listeners gain perspective and actionable tips on how to help those coping with the reality of extended care for someone that is not going to get better.

You can listen to the entirety of the podcast here. Handle with Care can also be found on Spotify, Google Play, and iTunes

The Malek family before Baher’s injury

I emerged from the story of Bess and Baher with an appreciation for how their story continues to unspool.  Baher needs ongoing care and his family continues to need all manner of social, emotional, and physical support as well.  Here are three action points for those that support individuals with disabilities and long-term care needs.

1. In the words of Bess, just continue to open doors for people in crisis.  Perhaps that is helping with paperwork, volunteering to drive to after-school practices, delivering meals, or giving gifts. 

2. As an employer, be aware of the pressure to perform that you are placing on employees that are in times of stress.  As you can offer grace, do so!  Ask yourself, do I need to make a big deal of this forgotten badge?  Can I allow this person to take ten minutes to compose themselves?  Each gesture of kindness extends humanity and conveys value to your employee

3. Long term disability extends over years.  How can you, as a supporting organization or individual, continue to check-in over time, offering support, asking how the person is doing? Can you offer a point person to coordinate care?  You will have to plan for this and build it into your calendar because, in the tyranny of the moment, it will be easy to lose sight of being supportive for the long haul.  Many people have short attention spans and your capacity to be there and be with a person over time speaks volumes. 

Waiting for a visit with neurology

Here are some additional excerpts from the conversation:

Your presence and your absence matter

14:07 - Bess Malek 

I think the people who showed up at some point was really important. And their absences, the absence of people that I thought would be there was an additional loss and grief that was acutely painful and you see the vacant places that you thought would be filled and and God brings other people, but you really remember that and wish that they had just acknowledged and been present for something.

A point person is tremendously helpful

19:14 - Bess Malek

 I also was thinking of how beneficial it could be if you had a point person at your work who could coordinate with maybe other supports around your family. Like, if you had a one person who knew me well at work who could then coordinate with either church community or neighborhood or family so that you're not, you know, doing, you know ,you're not replicating care or you're not letting holes be there. Could be a really powerful and efficient way to care for people better. And it doesn't have to be really formal through the department. It could just be that maybe management makes sure or co-workers make sure that somebody is kind of the point person and can communicate things that as they evolve.

Help with the overwhelming amount of paperwork

20:13 - Bess Malek

 I had a friend who took the time, and this is where I think people could really help in a practical way. This was in regards to counseling but it could apply to any paperwork that needed to get done. She took the time to print it all out, to sit down with me and help me fill out what she could. That handholding is the only way I could do another piece of paperwork. And I think when employers just kind of give you a link, that they could do a little more if you're actually in crisis just to help you see forward when it's difficult.

 Too much pressure can be crushing; give grace as you can

24:35 - Bess Malek

 I felt an enormous pressure to perform on every level. There were times I would go from work to the other hospital in a snowstorm, you know, with baby sitters at home till late at night. I really struggled when I felt like people were quick to jump on a 10 minute late gap in my performance or little things that, you know, you forget a badge. I remember one time I forgot my badge and I couldn't scan in and I felt like one particular co-worker who was more of a grudging spirit really made that a big deal. And I just dissolved. I just, it was just one more area that I felt like I couldn't make it work. I couldn't be enough or, and it was such a small thing. And so I think having grace for the tiny things, that really people can cover over is something that is so helpful. Or saying it's not a big deal or take a few minutes and go have some time you know in just 10 minutes to yourself to go get a drink and compose yourself.

It can be important to take time off

 28:09 - Bess Malek

 I think that taking time off is something that I wish I would have done more intentionally, maybe after some of the adrenaline. I even thought about taking time off this past fall to process a little more. And, I wasn't ever very well invited to do that. Nor did I know if it would be helpful, necessarily. But I think. If people helped open doors.

The Malek children visit Baher