Listen to the podcast here:
Supporting A Loved One During A Health Crisis with Jessica Berman
How are you doing?
I feel good. I feel strong.
Do you know why?
Because we’re on an adventure to help people heal.
Beyond that, it’s because we start our days with a few morning rituals. For anyone who doesn’t know what we’re talking about, a lot of people will call it the morning routine, but I was turned onto the word ritual instead of routine by a former mentor because ritual makes you feel like it’s special. It’s something you’re doing for yourself and not something you have to do. It’s the, “I get to do this,” versus “I have to do this.” What the morning ritual means to me is taking at least an hour in the morning before you do anything for anyone else to take care of yourself. This could be reading, this could be writing, this could be stretching, exercising or whatever you want to do for yourself.
You forgot the big word, Taylor, the meditation. What Taylor is talking about, I actually started and I wake up every day at 6:00 AM and I call it my 10/10/10 practice; ten minutes of meditation, ten minutes of reading and ten minutes of exercise or stretching or yoga poses. What I found is it centers my brain and it allows me to be me in the morning before my day gets all crazy.
I apologize for forgetting meditation, but it is a core part of my morning ritual. I’ve been doing Qigong practice in the morning. It’s an ancient Chinese movement and breath practice. I’ve been doing the reading and I’ve been doing meditation. That’s my core in the morning. I’ll throw in some other stuff every once in a while, but that’s where I find myself feeling most inspired, most grounded and just ready to start the day. Another big piece of that is you feel like you get a win first thing in the morning.
I resisted this for so long since I met Taylor. He kept saying to me about a year and I started to do it and I look forward to going to bed every night because I get to wake up at 6:00 AM, and soon will be 5:00 AM and really start my day with my hour to mean. I get inspired and on my yoga mat, I find things that come to me that wouldn’t normally come to me because my day is chaotic and is crazy.
I was originally turned onto this practice after reading a book called The Miracle Morning by a gentleman named Hal Elrod, who we’re going to get on this podcast.
I met that halfway through the book and it is an easy read. It’s brilliant.
What the author did was he went and interviewed a bunch of the top performers in the world and asked them what they do to start their morning, what are their morning rituals. The six biggest takeaways that he came from interviewing these people was reading, writing, exercise, visualization, affirmation and meditation. He promotes doing all six in the morning, but what I suggest is maybe trying a bunch of different morning rituals and see what really hits you in the heart and what makes you feel inspired to start your day.
The other thing I would add is to be consistent. If you start something, it takes about three weeks or 21 days to break the habit or start a new pattern. Give yourself a chance to do it. If you’re going to do it, do ten minutes. It’s ten minutes. Set the timer on your phone. Ten minutes of this, ten minutes of that. That’s all you’ve got to do. Just ten minutes to meditate. Ten minutes of a quick workout really fast. I don’t care if it’s on a StairMaster, a quick run, a quick jog, journal and read. Why not? What does this have anything to do with our podcast? Because we are Adventures in Health and we’re always going to find hints and tips to get back to the community, which is so important. It leads us to the next conversation with Jessica Berman.
That’s our special guest. I want to give a shout-out to our fans, our community and our audience who have started dropping ratings and reviews in iTunes. We’ve got a five-star rating and review from a user, New Grooves. They said, “Sean Entin is a true hero who overcame a massive stroke and uses his experience and others experiences to hack greater health and fulfillment in their lives. I highly recommend this podcast. These guys are the real deal.” Shout-out to New Grooves for being so kind to drop us a review.
Can we talk about Jessica Berman? I’ve never met her, but she’s a dear friend and the wife of Brad Berman who was already on the show. Brad as we all know, suffered a massive stroke, but because he got because of his trust and love for his wife and the Doula and what they built together with their kingdom and their kids, he has made a huge recovery. It’s because of his wife, because behind every good man is a great woman and this girl is so powerful. She got the community together behind her after feeling all alone and helpless to raise money for her husband and for the hospital and she even got the National Hockey League involved too, and who does that? That’s called playing extraordinary, and there are some people who are mediocre in life and ordinary. This woman is extraordinary.
Let’s go learn from her.
Welcome to the show, Jessica. How are you doing?
I’m doing okay, thanks. How are you doing?
We’re doing good. Sean, how are you doing?
I’m excited to talk to Jessica here. I know her husband well but I’ve never met her. Jessica Berman is Brad Berman‘s wife. If you haven’t checked out that episode of the podcast, go check it out. Learn from his story. We wanted to talk to you, Jessica, to hear your perspective and what it’s like to support someone who’s going through such a challenging incident in their life.
I’m happy to share the caregiver’s perspective. It’s often invisible in the journey.
Take us back to the day this all happened and what has happened to your husband. Through your eyes, what went down?
It was August 4, 2013. Brad was a healthy, young, vibrant 37-year-old guy who was in the midst of training for his fourth marathon and it was a Sunday morning. We had two kids. They were two and a half and five and a half and we always had a routine on the weekends where we would rotate working out or going to the gym. We were both runners and I was always very respectful of a marathon training as I had done marathons in the past. This was his turn to do his marathon. He was trying to PR and get his personal record. I used to refer to him as the guy who ate whole wheat bread with turkey and no mayo. He was the picture of health and didn’t have any risk factors.
I was working out at the gym because my workout was going to be shorter. It was probably around 7:00 AM and I was on the elliptical machine. This was before music was on your phone. I actually had a separate device with my music, but for some reason that day I had my phone in my hand and I got a phone call from Brad very shortly into my workout, which was unusual for him to call me when I was in the middle of working out. I answered and his words were slurring and he said, “Something’s wrong, you need to come home.” I dropped everything and ran to my car and drove back home and found him lying on the kitchen floor. He was laying awkwardly and frankly I had no idea what was happening. I’m so happy to go into the rest of the day, but that was how it all fell on my lap.
I’m assuming you just call 911, rushed to the emergency room. Can the people hear the rest of Brad’s story from that episode of the podcast?
From the caregiver’s perspective, I did not know that it was something serious, as crazy as that might sound. Although my grandmother had a stroke in front of me when I was ten and I was the one who called 911, I was not unfamiliar with the signs of stroke. It was so inconsistent with what I would imagine would be happening to my 37-year-old husband that I was completely in denial. He was the one who actually told me to call 911 as I was running to get him some Gatorade and thinking he was dehydrated or something. I did call 911. When I was on the phone with 911, I was describing what I saw which was, “My husband’s lying on the floor and I’m not sure what’s wrong with him. He’s having trouble speaking.” He tells them, “I have the worst headache of my life.”When something seems like it is the last thing anyone expects to happen, the natural reaction is disbelief. Click To Tweet
If you google that, that’s an indication of a brain hemorrhage. It was interesting that he had enough composure and self-awareness at that time to tell me that. Once I said that, everything’s changed in terms of the day. The ambulance came and took us to the hospital and when we arrived at the hospital, as he was coming out of the ambulance on the gurney, he had a grand mal seizure and was foaming at the mouth. They had to intubate him on the street. That was the beginning of him being in a coma for six weeks.
Your husband here is in a coma. What goes through your mind? What do you do? The panic is going to sink in. Anxiety is going to sink in.
I was still continuing to be in denial. I remember talking to a doctor when he had come through the surgery, but we were waiting to see him. I was babbling nonsense of, “We have dinner plans on Thursday night. What should I do about that? We’re supposed to go on vacation next week, what am I supposed to do about that?” Immediately, my mind went to, “How is it going to impact my life? We have all these plans. What’s happening?” He was like, “You need to cancel everything in your life for the foreseeable future. Your husband is on death’s door.” He needed to shake me to have me hear him. I was having trouble processing what was happening. Initially, it wasn’t panic. It was a complete shock and it took a while to have a better understanding of what was going on. I felt like I was having a lot of out-of-body experiences where I would pinch myself and try to held ground, “Is this real?”
I can only imagine. Talking to Brad and a couple other people who have had strokes early in their life, what I’ve noticed is that it seems like it’s the last thing anyone expects. When it does happen to someone especially like Brad who had been running, who had been healthy, who had been exercising, it’s the last thing you expect. When it happens, the natural reaction is disbelief and, “This can’t be happening.” You illuminated that so perfectly. Brad goes into a coma for six weeks and when he comes out of it, I’m sure you came throughout that six weeks, but I’m sure that’s where your job as a supporter and a caregiver starts. During that six weeks, what were you doing from your perspective to line everything up so when he was out of the coma, he was ready to start getting care?
Caregiving began when he was awake, but even while he was in a coma, I had this vision of when someone’s in a coma, they’re sleeping and then when they wake up, they’re awake. In our experience, it’s like that. It wasn’t like the light is off and then the light is on. It was very confusing and gradual and there were days when even when he was in a coma where he was seemingly awake but not really awake. Sometimes he would respond to commands, and sometimes he wouldn’t. Sometimes he seems catatonic. It was a very confusing state. We call it a coma for reference purposes. Speaking about that movie, Regarding Henry, have you ever seen that movie?
No, I haven’t seen that one.
It’s with Harrison Ford.
It’s with Harrison Ford and he had a massive car accident. He’s in a coma and then he wakes up and he’s a different person. It was like, “Is that what’s going to happen? Is he going to wake up and be a different person or is he going to wake up and be the same person?” Is he going to wake up and be like, “How long was I sleeping?” It wasn’t that. While he was in a coma, I feel my caregiving was in full swing. I set up a rotation schedule for all of our friends and family to be visiting him so that I could balance being with him and being with our kids and taking care of all of the things that needed to be taken care of all of the activities of daily living or domestic tasks that Brad handles that I now needed to handle.
He was responsible for paying bills. He knew all of our passwords for banks. He was responsible for all of the payments on our disability insurance and life insurance. I had to call our lawyers and I had to make sure I had the power of attorney and his living will, just all of those big things. He had a car. I had to deal with his work people. I had to deal with my work people. I had to be there for my kids. I had to make time for myself to go work out and get back into my own therapy. I had to find my kids a therapist. I had to research all of Brad’s health and medical options because even though his stroke was caused by an AVM that bled. The AVM itself was still there and it had to be treated because once it bled, we were told that it was a much higher risk of bleeding again.
We needed to figure out what his treatment options were. This was a very rare condition, so the medical field is not decided. There’s not a clear protocol and how to treat a grade five AVM that has bled in someone who’s 37. I started this whole process. I met with fifteen to twenty different neurosurgeons across the country to understand how they each approach it and get his medical records transferred to all these different places. My days were insanely full. I had notebooks of notes of conversations with different caregivers, with survivors, with doctors, with a physical therapist. That pretty much started right away.
You sound like Superwoman.
She is Superwoman or Wonder Woman, one of those comic book characters. I’m blown away and proud of you. All that happens and I know he had a craniectomy. It’s similar to mine where they remove his skull off his head.
They had to remove his skull and store it in his belly for three months. He lived in the hospital including the rehab hospitals for exactly four months.
I was there too. It’s crazy. Take us through when he wakes up. What then happens with you and with him because I know that your miracles just kept expanding. I know you’ve done some amazing things, so share with us at that point he wakes up and now you want to get him the right care, the therapy.
When he woke up, my hope was that it was going to be like the movies where you’re in a coma and then you wake up. It was clear that that was not what was going to happen. He woke up and pretty much had almost none of his faculties. He didn’t even know his brain injury was on the right side. He’s right-hand dominant. That should mean that his speech would be intact and some other things would have been intact, but because of the severity of his brain hemorrhage and the swelling that happened when he initially woke up, he couldn’t talk. His memory was completely trashed. Once he started speaking, oftentimes he doesn’t make sense. He definitely couldn’t retain anything in the short-term. He was awake but he wasn’t there.
Our hope was that he would continue to improve and the big question was what was he capable of getting back and what wasn’t he? How would be treating his AVM going to impact his recovery? Some of the treatment options could have set him back in his recovery as well because they’d be messing with his brain. There was a parallel analysis of how do we treat the AVM and do as little damage as possible while preserving and protecting against the risk of him having another hemorrhage? That was one of the tracks.
Then the other track was what are the latest and greatest technologies that are available to help him to recover as much as he possibly can? What’s the best rehab hospital? What are the best treatment options? Who are the best therapists? How do we get him in the best possible hand? That’s what that second phase was about. I had hoped that he could have participated in those decisions, but at that point he wasn’t in any condition to participate. I enlisted my friends and family to support me, but I felt I needed to bring somebody along with me who I knew Brad trusted, who I trusted. Who there was a mutual trust with and could help make me more comfortable with some of these enormous decisions that had to be made that any of which could have been the wrong decision because nobody knew what the best decisions were?
I felt I couldn’t make them by myself. I asked his brother who is probably the closest person in the world to him me and someone that I trust and have a lot of respect to be part of the decision-making process with me. I would do the homework and vet all the different doctors and rehab people and on all the different tracks. I then asked him to help me make the decision and weigh in and even meet with the doctors, which ultimately he did. That’s how I approached it.
It’s awesome to hear how much work and effort you were putting in behind the scenes. It speaks volumes to how this impacts not just the person who’s experiencing the stroke like Brad, but also you and your family and all the loved ones around them. I’m so amazed by how you stepped up to the plate and went for it. You didn’t have a choice but you stepped up and went for it. Speaking to Brad briefly, he mentioned that you started a fundraising campaign during this whole process. Where did that come into play along with the story here?
Brad came home from the hospital. It was the first week of December 2013, four months after his stroke. Throughout this whole time, the outpouring of support from friends and family and even people we didn’t know was so overwhelming and insane. What began happening was that I would start to receive acknowledgment cards or emails from different nonprofit organizations like, “John Smith made a donation in your honor and in honor of Brad.” It was all over the place where I felt it’s so nice that all these people clearly want to feel empowered to do something and to be helpful. I felt a sense of responsibility to help direct folks from our community and beyond who were clearly in some ways as traumatized as we were about what had happened to Brad. They didn’t want to feel powerless in that story.Be in control of yourself but don't be controlling of everything else. Click To Tweet
I had started when Brad was in the hospital, when it first happened, literally the second day. I had started sending these email updates to people because I was so overwhelmed by how many people were reaching out. I couldn’t keep up with the texts and the phone calls and the emails. I would send out these emails a couple times a week giving everyone full transparency about what was going on with Brad and how they could help us at all and ask for people’s forgiveness in not being able to be responsive to people and thank them for their support and their prayers. I had this built-in mechanism of communicating with a list that grew to 3,000 people or maybe even more. It had grown into this huge following.
On our website, Run4Brad.com, I believe I posted all of the updates. I think we’ve got to update number 52 or something. Once all these people were making donations and I was having this regular communication with this group, at the same time I was researching different treatment options or rehab options for Brad. We were in January or February at this point, so five or six months out of the stroke that traditional physical therapy was not going to get him where he wanted to be at the time. We had hoped that he could run again at the time, the sky was the limit in terms of his recovery. We had no idea what was permanent and what was reclaimable.
I came up with this idea that we could put a robotics rehabilitation program, a lower limb rehabilitation program in the hospital where he was already going for rehab. They already had an upper limb robotics program that he was using, but he was having a lot of issues with foot drop and it was impacting his ability to walk at all and obviously run for sure. He was partially in a wheelchair still at that point. I approached the hospital and I said, “If I fundraise for this, would you guys be responsible for implementing it and executing it?” They said, “Absolutely.” We did a makeshift agreement between us and I said, “I don’t know how long it’s going to take me to raise $600,000 or $700,000 that we needed to get the program started, but however long it takes is how long it will take.” We had the money within a year.
I got a question for you because this is all great but tell them you had a full-time job. What do you do? Who do you work with for?
I worked for the National Hockey League and I’m fortunate that when Brad was in a coma, the commissioner came to the hospital and saw Brad in a coma. I had worked closely with him and other senior leaders at the League in the years prior. We had actually gone through a round of collective bargaining because I was an employment labor and employment lawyer there. I had worked really hard with these people every day. In some ways, I had built up some goodwill but also, there was a personal relationship there that there was no question that they were going to help me to take care of what I need to take care of. In that first six months, for the first time in my entire life, including when I had children, I had put my career on hold. It wasn’t until Brad was in a routine and we had an aide who is taking care of him full-time in the house and a whole bunch of other things in place. My kids were doing okay and all of that where I began to reemerge at work and start to juggle even more things. Initially, Brad’s stroke and taking care of Brad, taking care of my kids and taking care of myself was all that I could handle, at least for the first four to six months.
Some of the advice that we’ve learned talking to Sean and talking to other people within this stroke community is that it’s so important for the loved ones to focus on taking care of themselves. You’re the perfect example of that. Not only did you take care of yourself but you also raised $600,000 to $700,000 to help the hospital get the equipment they needed to care for this person and this human life.
Not just Brad but other people are now going to use the equipment, which to me is that she took something again, which was broken. Not yet defeated and made it into something that works for everybody. We can call that a mitzvah in our language, but that’s amazing.
I’ve often said that I did it for selfish reasons, to be honest, not necessarily just to help Brad with his therapy but for me personally, it was a healthy distraction. It wasn’t like I was 100% being a martyr. It was helpful in those moments where I wanted to feel sorry for myself and curl up in a ball or there were times where I wanted to take off my shoes and walk barefoot for 100 days and see if I get eaten by a bear. Everyone has those thoughts. I had this bigger sense of responsibility and it had nothing to do with my small life and it had everything to do with all these other people. It allowed me to keep my depression and my fears in check and say, “Maybe this happened for a reason. Maybe this is the reason it happened. I don’t know. I got to focus on the things that we can build out of this that are good. I got to focus on what good can come out of this.”
Another line that we learned recently to be in control of yourself but not be controlling of everything else. You did exactly that. You took control of yourself, your husband, and your kids and get him healthy and get his rehab going. The universe worked with you and you raised all this money. What’s the rehab hospital called?
It’s the Burke Rehabilitation Hospital in White Plains, New York. It is one of the leading rehab hospitals in the US and they have a specific focus on dealing with brain injuries. We’re lucky that we live fifteen minutes from there. I know there are a lot of people who have this happen because I often am contacted by those people and caregivers who have to move to live close to a hospital that has better technology and better resources for people with brain injuries. I felt fortunate and had a lot of gratitude for the fact that we didn’t have to uproot our whole family to get access to this hospital.
I know this was an experience that happened to Brad, and you are amazing at supporting him through this and raising money for the rehabilitation hospital. I’m curious what changed inside of you during this whole process? Were there any resources that you reached out for or discovered personally that helped you to become as strong as you are in the process? I know you hit this mode of, “I just have to go and do everything.” Was there anything special that you discovered along the way?
I’ve leaned a lot on people. I intentionally try to not become isolated because I feel that that could be a default or a tendency because you feel it’s harder to relate to people. You look at them and they’re seemingly marching through their life not having to deal with these things yet that we were dealing with. I tried to not compare and know that everyone’s fighting a battle I know nothing about and that there was no reason why I should extract myself from my community who certainly weren’t pushing me out. The first thing is continuing to surround yourselves with people who care about you and wants to support you even if they don’t always say and do the right thing.
The second thing is that I feel lucky. I’ve always kept a journal. I shouldn’t say always, but throughout my life, there have been a lot of different periods of time where if I was working through something, I kept a journal and I immediately when Brad had his stroke that second day on August 5th, I bought a journal and I started writing. It helped me to keep my thoughts clear. It gave me permission to say things to myself on paper that they probably couldn’t say to other people about how I felt about what was going on. It gives you a better self-awareness and a stronger sense of self and resilience. My mom’s a psychologist. I’ve got to give her a shout-out because like my journal writing, I’ve always been in and out of therapy my whole life.
There’s nothing unique about me in my childhood or anything else that would have said, “She should be in therapy,” but my mom’s belief is that everybody could use that. Everybody could use a safe place to explore their sense of purpose, build resilience and develop better coping mechanisms and better clarity on what they want out of their lives and how to handle their life. I actually wasn’t actively seeing a therapist at that time, but in those first few weeks, it was one of the first systems I put in place. I knew I needed a regular outlet for myself to be able to process with someone who could give me confidentiality and good sounding board and advice to navigate all of the weeks, months and years ahead.
Did you keep the journal?
I did. Years ago, Brad and I are both regularly contacted by people who have this happen to them. I was contacted by someone who was asking me specific information about what was happening five months in or eight months in. It’s something about a period in time. As time passes, it all starts to meld together. I took out my journal to get a sense of what was going on at that time. It was hard to read. I thought about actually in the last couple of weeks I’m taking it out and reading it again, but it is definitely painful.
You should publish that journal because people would love to have the insight of what you have. The memoirs of a stroke survivor’s wife could be so helpful to those people who don’t know what to do. Some of what we’re doing over here with The Stroke Hacker, but I would definitely keep that in a safe place or transfer to digital copy because there’s a book there to be said. I know it’s hard for you to read or look at, but it’s something that may be part of your voice of reason and what you’ve done and all the work you put into it. It’s like going to law school and becoming a lawyer. You’ve been to neuro school. You’ve been to a school on how to take care of my husband who just had a brain injury. His skull was removed off his head and stored in his stomach. He’s paralyzed and now you have to revive him and it’s beautiful. Let that go. I would donate the proceeds back to your charity. Why not? Every 45 seconds, someone’s having a stroke and that family doesn’t know what to do. I know it’s a lot to think about, but I think that you’re amazing.
A few people have suggested that I should write a book. It’s definitely something I’ve thought about. Maybe one day I will.
We hope that you do just so the world can you hear your voice. What you have going on is very special.
It’s powerful. It’s dynamic.Everyone's fighting a battle. There is no exception. Click To Tweet
We’re coming up on the end of our time, but I have one more question. This is a question we ask everyone. What’s your inspiration?
Part of my New Year’s resolution is to try to seek more internal validation and less external validation. I want my inspiration to be my sense of purpose and just believing that everyone I included deserves happiness. Trying to find a way for all of us to have permission to live our purpose and to give ourselves permission to be content and happy, whatever that means.
Thank you for sharing.
I love your husband. You are the next step. I think he’s the best because of you and thank you for everything you’ve done for him and the thousands of others you’ve touched indirectly with what you’ve raised for them. I’m sure people are going to walk and going to use their limbs again because of you and what you’ve done. Thank you so much and hopefully, I’ll get out that way. You guys will come out here and we can meet in person. It can be huge.
I wish you the best of luck. Thank you for giving a voice to this, particularly for people like Brad who need an opportunity to share their story.
It takes a village.
Thank you, Jessica.
- Jessica Berman
- The Miracle Morning
- Brad Berman – previous episode
- National Hockey League
- Burke Rehabilitation Hospital
About Jessica Berman
Jessica Berman is the mother of two beautiful boys and the wife of Brad Berman. She works for the NHL Foundation as VP, Community Development, Culture & Growth / Executive Director.