How Would You React If You Found Out You Were Dying?

How Would You React If You Found Out You Were Dying?

Through my non-profit “Thru My Eyes” I interview parents who are faced with life threatening illnesses and enable them to leave a video legacy for their children and loved ones. People often ask me, how are you able to sit and speak with someone so intimately, while asking them some of the hardest questions and still remain composed and present while fully knowing what lies ahead for them?

I earnestly explain that it is truly a gift and an honor that I am invited into their home and that they open their heart and entrust me with the most intimate details of their lives. At intense emotional moments during an interview, I may become tearful as I become so deeply and emotionally impacted by their unique histories and experiences. They respond to my emotionality by playfully expressing, “I don’t know how you do this, I would have been crying much sooner.” We connect over my empathy and their warmth and kindness.

I attempted to reach out to a 44 year old male whose interview had to be cancelled the prior week because he was suddenly hospitalized. His wife got in touch and informed me that he was sent home with home hospice because his health had regressed so rapidly and to the point where he was barely conscious and able to carry a conversation. She reported that she had really wanted the video legacy for her two young children, ages thirteen and nine, but at this point it was too late for him to be interviewed. She regretted that he had waited so long to come to the decision, but she also realized that it inevitably was his decision to make.

During my years of group therapy training, I joined a psychotherapy group for psychotherapists. The group therapist/leader was an esteemed leader and educator in the field. During our group sessions, the group members, including myself, witnessed signs of decline in his health. When we expressed our concern to him, he readily disclosed his battle with cancer. Eventually and suddenly, when he was unable to work with us, we met at his home to show our support and express our concerns about never having gotten the opportunity to appropriately and effectively plan our termination and transition to another group. He shared that he was having a challenging time facing his illness and reassured us that he would seek his own treatment to explore and work through why he was struggling.

Upon his death and when we went to pay our condolences, his wife disclosed to us that he did attend one treatment session with her being there along-side him and that throughout the session he refused to have any dialogue in regard to his illness. He sat idly as she shared with the therapist. She expressed to us, “He just couldn’t do it. He loved life way too much to face that he wouldn’t be part of it all anymore.” Through her expression of his sentiments and thoughts, my expectations and feelings shifted. I recognized that my expectations focused around my ideals about his professionalism rather than his humanity. I truly appreciated his desire and need to live and continue to love life until the very last minute. He committed to never losing his will to live and veraciously stood by that.

Like so many, people choose to approach the very act of videotaping with reluctance and fear, feeling it is an inevitable “death sentence” and that they are making a personal statement in regard to “giving up their will to live.” Even through reassurance and explanation that it is similar to taking out a life insurance policy and that it is done as a precaution but never with the idea that it will ever inevitably need to be utilized, people still tend to be reluctant to committing to the process. Unfortunately, way too often delay is fraught with regret because it is too far into the progression of their illness and the window of opportunity, where they are well enough to communicate their personal story, is missed.           

I wonder about the factors that contribute to the way individuals cope and respond to their devastating prognosis. There are those individuals who seem accepting of their inevitable death and are generally open to receiving support from others and sharing in their challenges. There are those individuals who are extremely private about their illness and share with relatively few. There are still others who seem in denial of their fate up until or very close to their death. This directly impacts how quickly they contact us and whether they are effectively able to follow through with the videotaping process.

I also ponder about the various ways that individuals choose to inevitably conduct their videotaping. Some opt to share intrinsic details of their lives based on the questions they have selected to address. Others prefer a combined approach of sharing details of their lives and talking directly into the camera to specific beloved family members and friends. While others want to spend their time entirely speaking directly into the camera to selected family members and friends. The approach differs from person to person based on their desires and needs.

Dede, a 40 year old female with an 8 year old daughter who was the inspiration for the creation of the Foundation and who it is dedicated to, was an incredibly vibrant, optimistic and joyful person. She showed up to the gym exuding this persona right up to and until her very last days. I personally observed her struggle and spoke to her about the challenges she was experiencing and those she expected her family to endure following her death. One day I asked her, “How is it that you remain so gracious, cheerful and joyful given what you’re going through?” She responded, “When I knew how grave my situation was I decided I can either leave this earth being depressed, sad and angry or I can choose to be appreciative, happy and feel loved and I decided that I’m opting for the latter and that every day I would dedicate my life to living that way no matter what.” I was so moved by her words. She held true to the commitment she had made to herself.

I can relate to many of the people I interview because of being close to their age and having children of similar ages. I leave each experience with further gratitude for my life and health and contemplate how I might handle it if I were in their position. I speak from a place of what I hope and imagine for. I grasp the idea and agree that “you never truly know” until you find yourself in that position. For me, I would hope and imagine organizing a living funeral where I preemptively would be able to openly and candidly express myself to those I love. I imagine getting in touch with and feeling gratitude for every day I had left and would speak openly about my impending death and allow others to express themselves as well if they desired to. For now… I will try my best to live in the moment, have gratitude for the life I live and commit to that life no matter what.  


 

About the Author: Michelle P. Maidenberg, PhDmichelle headshot

Michelle P. Maidenberg, Ph.D., MPH, LCSW-R, CGP is the President/Clinical Director of Westchester Group Works, a Center for Group Therapy in Harrison, NY. She also maintains a private practice. She is the Co-Founder and Clinical Director of “Thru My Eyes” a nonprofit 501c3 organization that offers free clinically-guided videotaping to chronically medically ill individuals who want to leave video legacies for their children and loved ones. 

Dr. Maidenberg is Adjunct Faculty at New York University (NYU). She created and coordinates the Cognitive-Behavioral Therapy Program at Camp Shane, a health & weight management camp for children and teens in NY, AZ, GA, CA & TX and Shane Resorts, a resort focusing on health & weight management for young adults and adults in NY & TX.  She is author of “Free Your Child From Overeating” 53 Strategies For Lifelong Change Using Cognitive-Behavioral Therapy, Acceptance and Commitment Therapy & Mindfulness which is forthcoming in Spring 2016.

You can find Michelle via her websites, www.MichelleMaidenberg.com or www.WestchesterGroupWorks.com, and follow her on Facebook or Twitter.

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Behaviour is never from ‘bad’. It’s from ‘big’. Big hungry, big tired, big disconnection, big missing, big ‘too much right now’. The reason our responses might not work can often be because we’ve misread the story, or we’ve missed an important piece of it. Their story might be about now, today, yesterday, or any of the yesterdays before now. 

Our job isn’t to fix them. They aren’t broken. Our job is to understand them. Only then can we steer our response in the right direction. Otherwise we’re throwing darts at the wrong target - behaviour, instead of the need behind the behaviour. 

Watch, listen, breathe and be with. Feel what they feel. This will help them feel you with them. We all feel safer and calmer when we feel our people beside us - not judging or hurrying or questioning. What don’t you know, that they need you to know?♥️
We all have first up needs. The difference between adults and children is that we can delay the meeting of these needs for a bit longer than children - but we still need them met. 

The first most important question the brain needs answered is, ‘Is my body safe?’ - Am I free from threat, hunger, exhaustion, pain? This is usually an easier one to take care of or to recognise when it might need some attention. 

The next most important question is, ‘Is my heart safe?’ - Am I loved, noticed, valued, claimed, wanted, welcome? This can be an easy one to overlook, especially in the chaos of the morning. Of course we love them and want them - and sometimes we’ll get distracted, annoyed, frustrated, irritated. None of this changes how much we love and want them - not even for a second. We can feel two things at once - madly in love with them and annoyed/ distracted/ frustrated. Sometimes though, this can leave their ‘Is my heart safe?’ needs a little hungry. They have less capacity than us to delay the meeting of these needs. When these needs are hungry, we’ll be more likely to see big feelings or big behaviour. 

The more you can fill their love tanks at the start of the day, the more they’ll be able to handle the bumps. This doesn’t have to be big. It just has to be enough. It might look like having a cuddle, reading a story, having a chat, sitting with them while they have breakfast or while they pat the dog, touching their back when they walk past, telling them you love them.

All brains need to feel loved and wanted, and as though they aren’t a nuisance, but sometimes they’ll need to feel it more. The more their felt sense of relational safety is met, the more they’ll be able to then focus on ‘thinking brain’ things, such as planning, making good decisions, co-operating, behaving. 

(And if this today was a bumpy one, that’s okay. Those days are going to happen. If most of the time their love tanks are full, they’ll handle when it drops a little. Just top it up when you can. And don’t forget to top yours up too. Be kind to yourself. You deserve it as much as they do.)♥️
Things will always go wrong - a bad decision, a good decision with a bad outcome, a dilemma, wanting something that comes with risk. 

Often, the ‘right thing’ lives somewhere in the very blurry bounds of the grey. Sometimes it will be about what’s right for them. Sometimes what’s right for others. Sometimes it will be about taking a risk, and sometimes the ‘right’ thing just feels wrong right now, or wrong for them. Even as adults, we will often get things wrong. This isn’t because we’re bad, or because we don’t know the right thing from the wrong thing, but because few things are black and white. 

The problem with punishment and harsh consequences is that we remove ourselves as an option for them to turn to next time things end messy, or as a guide before the mess happens. 

Feeling safe in our important relationships is a primary need for all of us humans. That means making sure our relationships are free from judgement, humiliation, shame, separation. If our response to their ‘wrong things’ is to bring all of these things to the table we share with them with them, of course they’ll do anything to avoid it. This isn’t about lying or secrecy. It’s about maintaining relational ‘safety’, or closeness.

Kids want to do the right thing. They want us to love and accept them. But they’re going to get things wrong sometimes. When they do, our response will teach them either that we are safe for them to come to no matter what, or that we aren’t. 

So what do we do when things go wrong? Embrace them, reject the behaviour:

‘I love that you’ve been honest with me. That means everything to me. I know you didn’t expect things to end up like this, but here we are. Let’s talk about what’s happened and what can be different next time.’

Or, ‘Something must have made this (wrong thing) feel like the right thing to do, otherwise you wouldn’t have done it. We all do that sometimes. What do you think it was that was for you?’

Or, ‘I know you know lying isn’t okay. What made you feel like you couldn’t tell me the truth? How can we build the trust again. Let’s talk about how to do that.’

You will always be their greatest guide, but you can only be that if they let you.♥️
Whenever there is a call to courage, there will be anxiety - every time. That’s what makes it brave. This is why challenging things, brave things, important things will often drive anxiety. 

At these times - when they are safe, but doing something hard - the feelings that come with anxiety will be enough to drive avoidance. When it is avoidance of a threat, that’s important. That’s anxiety doing it’s job. But when the avoidance is in response to things that are important, brave, meaningful, that avoidance only serves to confirm the deficiency story. This is when we want to support them to take tiny steps towards that brave thing. It doesn’t have to happen all at once.l and it doesn’t matter how long it takes. Brave is about being able to handle the discomfort of anxiety enough to do the important, challenging thing. It’s built in tiny steps, one after the other. 

We don’t have to get rid of their anxiety and neither do they. They can feel anxious, and do brave. At these times (safe, but scary) they need us to take a posture of validation and confidence. ‘I believe you, and I believe in you.’ ‘I know this feels big, and I know you can handle it.’ 

What we’re saying is we know they can handle the discomfort of anxiety. They don’t have to handle it well, and they don’t have to handle it for too long. Handling it is handling it, and that’s the substance of ‘brave’. 

Being brave isn’t about doing the brave thing, but about being able to handle the discomfort of the anxiety that comes with that. And if they’ve done that today, at all, or for a moment longer than yesterday, then they’ve been brave today. It doesn’t matter how messy it was or how small it was. Let them see their brave through your eyes.‘That was big for you wasn’t it. And you did it. You felt anxious, and you stayed with it. That’s what being brave is all about.’♥️
A relationally unsafe (emotionally unsafe) environment can cause as much breakage as as a physically unsafe one. 

The brain’s priority will always be safety, so if a person or environment doesn’t feel emotionally safe, we might see big behaviour, avoidance, or reduced learning. In this case, it isn’t the child that’s broken. It’s the environment.

But here’s the thing, just because a child doesn’t feel safe, doesn’t mean the person or environment isn’t safe. What it means is that there aren’t enough signals of safety - yet, and there’s a little more work to do to build this. ‘Safety’ isn’t about what is actually safe or not, it’s about what the brain perceives. Children might have the safest, warmest, most loving adult in front of them, but that doesn’t mean they’ll feel safe. This is when we have to look at how we might extend bigger cues of warmth, welcome, inclusiveness, and what we can do (or what roles or responsibilities can we give them) to help them feel valued and needed. This might take time, and that’s okay. Children aren’t meant to feel safe with every adult in front of them, so sometimes what they need most is our patience and understanding as we continue to build this. 

This is the way it works for all of us, everywhere. None of us will be able to give our best or do our best if we don’t feel welcome, liked, valued, and free from hostility, humiliation or judgement. 

This is especially important for our schools. A brain that doesn’t feel safe can’t learn. For schools to be places of learning, they first have to be places of relationship. Before we focus too sharply on learning support and behaviour management, we first have to focus on felt sense of safety support. The most powerful way to do this is through relationship. Teachers who do this are magic-makers. They show a phenomenal capacity to expand a child’s capacity to learn, calm big behaviour, and open up a child’s world. But relationships take time, and felt safety takes time. The time it takes for this to happen is all part of the process. It’s not a waste of time, it’s the most important use of it.♥️

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