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Handle with Care: Empathy at Work


May 27, 2019

 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 reality of extended care for someone that is not going to get better.

We want to help people that are going through hard times, but it can be hard to know what to do or what to say.  Hi, I’m Liesel Mertes and this is the Handle with Care podcast, where we talk about empathy at work.  On each episode, I welcome a guest that has lived through a disruptive life event. We cover topics from death to divorce to that scary diagnosis and, in each story, we give you actionable tips on what you can do to show empathy and give support as a manager, a coworker, or a friend.

 

Today I talk with Bess Malek-Maiorano about the traumatic brain injury that her husband, Baher, suffered more than five years ago.  His resulting memory loss, disability, and sudden dependence changed everything for the Malek family, which ushers us into questions of how to come alongside an individual and his or her caregivers in the face of long-term illness. 

 

I first met Bess when my daughter, Ada, was in kindergarten.  Bess was a part of the parent’s council at the school, she led the evening meeting with a baby on her hip.  After the meeting, Bess found time, to listen and empathize with my story of loss.  She had had a daughter die too and took time to listen and cry with me. 

 

That was before everything changed for the Malek family.  Over the next year, I followed her story with deep sadness.  Her life was forever altered, the family cast into a system of complicated medical care. 

 

Bess is a gifted writer, and I followed her story through the blog that she faithfully kept.  Some excerpts from her writing will feature in this episode.  Her story is shocking, tragic, and ongoing.  But first, a little background on Bess and Baher. 

 

[00:09:48.550] - Bess Malek

So, Baher is originally native Egyptian. And we met in a philosophy class. I met him shortly out of pharmacy school and we were soulmates. He is an engineer. He loved the life of the mind. He was a reader, a studier, he loved theology and so, ironically, to have his mind taken from him is something that still shocks me to this day.

 

[00:10:21.510] - Bess Malek

He was a wonderful, warm father with the best laugh and he was well respected as the software engineer and project manager and we had a very joyful partnership.

 

The inflection point in Bess and Baher’s story happened more than five years ago.  This was the season of life when I met Bess, where she was leading school activities. 

 

[00:10:52.260] - Bess Malek

So we had had a lot of parenting responsibilities, through the gift of four children. And so, I was mostly taking care of them. We had also had a foster child that fall, which was a privilege

 

In addition to leading the PTO, taking in foster children, and caring for her four biological children, Bess was also working as a pharmacist, part-time, at Riley Children’s hospital.  She had worked there for more than twenty years, ever since she graduated.  In the spring of 2014, Baher began to develop some flu-like symptoms.  He stayed home from church over Easter and even went to the ER as his symptoms worsened, but they said he would be alright and sent him home.  But Baher was not alright. 

 

Ominous, brooding music under portions of the following section

[00:07:16.400] - Bess Malek

That morning, as I was getting ready to run errands, I heard some noises from our room and I went up there and I ended up finding him unresponsive in a state, of, he was awake but couldn't respond. He was unable to speak and I was aware that his breathing was very fast and he was covered in sweat and I called 9 1 1 and our life has never been the same.

 

Baher was rushed to the hospital.  The doctors were unable to find any source of infection and yet Baher was in a state of constant epileptic seizures. 

 

[00:08:10.940] - Bess Malek

It remains unknown what was the primary cause. His symptoms were similar to a viral encephalitis or autoimmune and stuff like which are difficult to diagnose.

 

Baher was placed in a coma, Bess sat by his side, praying, for weeks. 

 

[00:09:00.860] - Bess Malek

And about, seven weeks after that, after many, many neurologists and just a lot of intense scrutiny and some different procedures that they did, he amazingly started to wake up.

 

Yet, all was not well with Baher.

 

[00:11:57.180] - Bess Malek

So, no one had survived this type of lengthy status epilipticus, which is why he was then, and where you have constant seizures, basically a forest fire in your brain for weeks, and so it was uncertain if he would have verbal skills. What the nature of his brain damage would be at the end. If he would be on a vent if he would have feeding tubes. Miraculously, he came off the vent and he was able to breathe on his own. His verbal skills were completely intact, his vocabulary was intact ,and yet his temporal lobes for completely burned up, which meant nothing to me at the time,

 

[00:12:47.480] - Bess Malek

but it meant, now that I know that all of the memories that he had, all the experiences were locked away. And the irony that a data engineer was unable to get into the data of his entire life was a surreal experience that I had no idea how to navigate and no one could give me any expectation.

 

Music under some of the following section

[00:13:21.310] - Bess Malek

I think what's unique about brain injury is that there is no protocol that they can pull. There is no real resources. Everything is unique and I was launched into this world of rehab and recovery, variance supported and with a man who was a shell of himself and unable to participate in his own recovery or care because he couldn't even understand that he had been ill. For instance, when he came home after being in various rehab hospitals and getting very dire prognosis, which was heartbreaking,

 

Baher would wake up in the morning and ask for his car keys, convinced that he was still going to work.  He would get confused, disoriented, agitated, and Bess would have to explain, again, what had happened, that he could no longer drive, that he would never return to work.  Daily, Baher had to reacquaint himself with the tragedy that was now his life. All this, in the midst of battles over insurance providers and care and coping with sporadic seizures that would throw Baher to the ground.  And here, I think it would be valuable to give you the real-time reactions of Bess from her blog, Bess wrote the following: 

 

PUT MUSIC THROUGHOUT, UNDER THIS MEMORY SECTION

Baher only said a few words today.  He started having some seizures this morning and was post-ictal the rest of the day.  Feverish. Flushed.  His temperature is increasing.  Six seizures today.  Hopefully, just a side infection unrelated to the incision sites.  Probably just inflammation from having his major nerve tampered with.  But I am really, really sad tonight.  Lonely. Tired of asking a nurse to come. Tired of the powerlessness in waiting. And asking.  Tired of the power that others have to give or withhold.”

 

She continues, and you can hear the weight of memory in her words: 

 

PUT MUSIC THROUGHOUT, UNDER THIS MEMORY SECTION

Maybe I just miss Baher’s little black car pulling in, with his backpack swung happily over his shoulder, to hug the kids, telling them, ‘My day just got better.’ Pick up soccer games on rough black top the skinned knees. Summer planning.  Child rearing goals.  Lively discussions.  Bill paying that is on time.  Routine. I miss it…all of it.  I can’t stop crying tonight.  I could not make it through vocab words or bed time stories. But I had to.  There is no one else to do it.” 

 

Every day was hard.

 

[00:17:24.060] - Bess Malek

It was very difficult for me to know what I would need.

 

And Bess was struggling under a mountain of paperwork

 

[00:18:01.760] - Bess Malek

I struggled to get a hold of human resources and kind of be led well in finding insurance numbers or.

 

[00:18:18.280] - Liesel Mertes

There is such a bureaucracy, right, to follow ups on claims.

 

[00:18:22.570] - Bess Malek

Its enormous.

 

[00:18:24.280] - Liesel Mertes

 Did you feel like you were having to pursue that yourself, in a way that was taxiing in the midst of an already totalization situation?

 

[00:18:35.360] - Bess Malek

I think what happens to people in trauma that there is a great fatigue and a weariness of all, and especially with the documentation and the paperwork, that is overwhelming all of our society. More so than ever. You can't even wrap your head around what you should do what you should be doing. I had insurance battles to fight for care that the insurance companies didn't want to give to someone without a very positive prognosis. I had to figure out how much money we would need, how much I needed to work.

 

The family needed money, so Bess went back to work part-time just three months after Baher’s illness. And on today’s episode, I want to focus on that return to the workplace.  How were Bess, Baher and the family supported?  How were they missed in this complicated situation?  Baher worked, at the time of his injury, for Liberty Mutual. 

 

[00:15:22 - Bess Malek

In hindsight, I very much appreciated the visits that we received from people in his work. There were very sweet times where his coworkers or his team would come to the hospital or find ways to be involved with our family. There was one Christmas that, has, one of his co-workers heard that our son loved to decorate with Christmas lights in honor of his dad and what they used to do. And he donated a very large Christmas snowman to our yard. His workplace was very good at writing notes. They wrote actually a book of the ways that he had been a good team leader for them and the things they appreciated about him that I still have in his room. Now in the nursing home, that he can read and feel appreciated and loved. Some of his co-workers are very faithful in their visits. Even this week, some Liberty Mutual employees came to see him and that's just precious to me that he would be honored. 

 

Those who showed up were precious in their gestures, but Bess also remembers those that were absent

 

MUSIC SOMEWHERE UNDER THIS SECTION

[00:42:55] - 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.

 

Bess was also interacting with her workplace, Riley Children’s Hospital. For Bess, Baher’s illness was not the first disruptive life event to send ripples through her workplace. 

 

[00:20:15.200] - Bess Malek

We had lost a baby to Trisomy 13 and I had worked in the NICU throughout the time that I was pregnant and my workplace wasn't sure how to support me through a pregnancy that also resulted in a loss. When another supervisor lost a baby a year or two later, they actually came back and apologized to me. And said they they hadn't handled it right, that they hadn't been sensitive enough. And that was really humble and gracious, that my management, who happened to be women. But they realized that there was more that could have been done.

 

Bess’ workplace had grown in their capacity to give support, and there were ways in which she was really supported well:

 

[00:22:49.030] - Bess Malek

Some of the really precious things that they did, was they adopted our family that first Christmas and they recognized that we would be spending it in the hospital. Baher was constantly hospitalized and bouncing around from facility to facility. We were spending it at the very organization where I worked as well and they filled our back porch with presents and my kids got to discover that. They had carefully selected gifts that would be meaningful to all of us. And that was a rich gift that my kids still reference and very thoughtful.

 

[00:23:37.990] - Bess Malek

I think anything you can do for the children involved in a loss is precious to the parents.

 

Musical transition

[00:35:05] - Bess Malek

It's been really hard because of the ambiguous nature of my loss and that has made it uniquely difficult for my kids because they lost two parents at the same time. I was gone all the time and so there is a lot of anxiety. Counselling has been very helpful to us as a family. I think pointing people to good family grief counselling is vital for your children and yourself to be able to have language to process things.

 

 

I resonate, in my own way, with this observation of Bess.  Because it is hard to parent your children when you yourself are under so much stress.  Here is another excerpt from her blog: 

 

MUSIC THROUGHOUT THIS WHOLE MEMORY

I am patience-less, and it is the small things – children who aren’t listening, whining voices, car doors that stick, taking a wrong turn, peas that roll from the edge of the table from an ungrateful fork.  I cringe at my own limited self and my worn nerves.”  Or this:“I can’t stop crying tonight.  I could not make it through vocab words, or bedtime stories.  But I had to.  There is no one else to do it.” 

 

Musical interlude

 

Coworkers also cared for Bess with little gifts

 

Obviously. I had a couple of co-workers that would leave things in my locker throughout and they did that so faithfully. They would leave a little gift card. Money was tight and you weren't sure what you were going to have long term and what you were going to lose. And so it was just always a bright encouragement to find chocolate or just small things that meant people were thinking of you in deeper ways.

 

In addition to gifts, Bess reflected on how structural, organizational support can be so very important.

 

[00:35:56.320] - 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.

 

Musical interlude

 

[00:33:25.000] - 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.

 

It was also immensely important to have people that saw and acknowledged her struggle

 

[00:24:51.210] - Bess Malek

and I can't stress enough the importance of just recognizing that somebody is carrying deep pain. I think people get afraid that they're gonna make you sad that they're going to trigger something. And the fact is the triggers are there all the time regardless, but just people being sensitive.

 

Musical interlude

 

[00:26:02.710] - Bess Malek

I think just people saying you know, how. How are your kids doing with this? How is your husband doing? How. Are. You. Today?

 

And in the midst of this stress, the workplace environment of healthcare had its own complications.  Bess was in a caring profession, where, despite her own daily challenges, she had to continue to administer comfort to her patients. 

 

[00:21:07.110] - Bess Malek

And I think, especially in a medical setting it's easy to be insensitive because your work involves people's tragedy and you, and yet, you have to function there every day and in a professional environment as well. It's easy for people to forget what you're dealing with through your personal medical side.

 

Musical transition

 

26:05

I had to field. So. Many crises. At work. With my kids. With Baher's care. I would get, even calls from hospital security that Baher, who is often very unstable and confused. And that was. Very hard to. Turn. Around on one side. And take a call that broke your heart. And then turn back to administer care to other sick people was that times something I wasn't sure I should even be continuing to do.

 

There were also ways that Bess was mishandled.  Part of this was, perhaps, related to a managerial change. The manager that had known Bess through her infant loss and through Baher’s illness was no longer at Riley.

 

[00:27:21.280] - Bess Malek

I think that's my management changed and I actually had a new manager there was actually a gap in management for a time where the manager that I was very close to that I had walked right through several years, she was gone, and I at that time really struggled with knowing who was able to even be aware. And there's a lot that managers have to balance and there's fairness and there is, you know, they have a lot of demands and there was a rocky time for our management but I think just check-ins would be helpful. And if there is new management, maybe feeling like they want to know a little bit more of your underlying story if it's unique, would be really helpful.

 

Musical transition

 

Music under some of the stress points in this (following) passage

[00:29:35] - 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.

 

Musical interlude

 

[00:37:00 - Liesel Mertes

Are there any words or reflections that you would offer to someone going through a similarly long term experience with disability or with a family member and care or in addition to that, words that you would offer to yourself four years ago or three years ago?

 

[00:37:36.290] - Bess Malek

Its a very emotional question I actually spoke to a friend today who was at the hospital with her child who's been hospitalized for many months and I think what I was able to say is, you know, just enjoy, enjoy the light that you have in that day and I, I struggled to know whether, you don't know whether to lower your expectations or to have more hope. And I think, I had to just ask God to be my my provider and my resource. I couldn't pull it together. I couldn't demand more from anyone. I had to just rely on the foundation of faith that I had, on and just be willing to learn through loss and, and continue to gather together the beauty that you, what's available to you and to just grieve.

 

[00:39:02.230] - 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.

 

[00:39:36.780] - Bess Malek

Just continue to help open doors for people in crisis, whatever that looks like if it's paperwork. If it's a meal, rides for your children are very important. Just finding little ways to link practical help. And I think patience, patience with the process and with yourself is just a very important resource

 

Musical transition

 

Bess and Baher’s story is still unspooling.  Baher continues to have substantial medical needs, his family continues to need all manner of physical, emotional, and social support.  And, at the close of this conversation, I’d like to offer three action points for those that support individuals with disabilities and long-term care needs.

 

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

 

Outro