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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Anxiety is a sign that the brain has registered threat and is mobilising the body to get to safety. One of the ways it does this is by organising the body for movement - to fight the danger or flee the danger. 

If there is no need or no opportunity for movement, that fight or flight fuel will still be looking for expression. This can come out as wriggly, fidgety, hyperactive behaviour. This is why any of us might pace or struggle to sit still when we’re anxious. 

If kids or teens are bouncing around, wriggling in their chairs, or having trouble sitting still, it could be anxiety. Remember with anxiety, it’s not about what is actually safe but about what the brain perceives. New or challenging work, doing something unfamiliar, too much going on, a tired or hungry body, anything that comes with any chance of judgement, failure, humiliation can all throw the brain into fight or flight.

When this happens, the body might feel busy, activated, restless. This in itself can drive even more anxiety in kids or teens. Any of us can struggle when we don’t feel comfortable in our own bodies. 

Anxiety is energy with nowhere to go. To move through anxiety, give the energy somewhere to go - a fast walk, a run, a whole-body shake, hula hooping, kicking a ball - any movement that spends the energy will help bring the brain and body back to calm.♥️
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#parenting #anxietyinkids #childanxiety #parenting #parent
This is not bad behaviour. It’s big behaviour a from a brain that has registered threat and is working hard to feel safe again. 

‘Threat’ isn’t about what is actually safe or not, but about what the brain perceives. The brain can perceive threat when there is any chance missing out on or messing up something important, anything that feels unfamiliar, hard, or challenging, feeling misunderstood, thinking you might be angry or disappointed with them, being separated from you, being hungry or tired, anything that pushes against their sensory needs - so many things. 

During anxiety, the amygdala in the brain is switched to high volume, so other big feelings will be too. This might look like tears, sadness, or anger. 

Big feelings have a good reason for being there. The amygdala has the very important job of keeping us safe, and it does this beautifully, but not always with grace. One of the ways the amygdala keeps us safe is by calling on big feelings to recruit social support. When big feelings happen, people notice. They might not always notice the way we want to be noticed, but we are noticed. This increases our chances of safety. 

Of course, kids and teens still need our guidance and leadership and the conversations that grow them, but not during the emotional storm. They just won’t hear you anyway because their brain is too busy trying to get back to safety. In that moment, they don’t want to be fixed or ‘grown’. They want to feel seen, safe and heard. 

During the storm, preserve your connection with them as much as you can. You might not always be able to do this, and that’s okay. None of this is about perfection. If you have a rupture, repair it as soon as you can. Then, when their brains and bodies come back to calm, this is the time for the conversations that will grow them. 

Rather than, ‘What consequences do they need to do better?’, shift to, ‘What support do they need to do better?’ The greatest support will come from you in a way they can receive: ‘What happened?’ ‘What can you do differently next time?’ ‘You’re the most wonderful kid and I know you didn’t want this to happen. How can you put things right? Do you need my help with that?’♥️
Big behaviour is a sign of a nervous system in distress. Before anything, that vulnerable nervous system needs to be brought back home to felt safety. 

This will happen most powerfully with relationship and connection. Breathe and be with. Let them know you get it. This can happen with words or nonverbals. It’s about feeling what they feel, but staying regulated.

If they want space, give them space but stay in emotional proximity, ‘Ok I’m just going to stay over here. I’m right here if you need.’

If they’re using spicy words to make sure there is no confusion about how they feel about you right now, flag the behaviour, then make your intent clear, ‘I know how upset you are and I want to understand more about what’s happening for you. I’m not going to do this while you’re speaking to me like this. You can still be mad, but you need to be respectful. I’m here for you.’

Think of how you would respond if a friend was telling you about something that upset her. You wouldn’t tell her to calm down, or try to fix her (she’s not broken), or talk to her about her behaviour. You would just be there. You would ‘drop an anchor’ and steady those rough seas around her until she feels okay enough again. Along the way you would be doing things that let her know your intent to support her. You’d do this with you facial expressions, your voice, your body, your posture. You’d feel her feels, and she’d feel you ‘getting her’. It’s about letting her know that you understand what she’s feeling, even if you don’t understand why (or agree with why). 

It’s the same for our children. As their important big people, they also need leadership. The time for this is after the storm has passed, when their brains and bodies feel safe and calm. Because of your relationship, connection and their felt sense of safety, you will have access to their ‘thinking brain’. This is the time for those meaningful conversations: 
- ‘What happened?’
- ‘What did I do that helped/ didn’t help?’
- ‘What can you do differently next time?’
- ‘You’re a great kid and I know you didn’t want this to happen, but here we are. What can you do to put things right? Do you need my help with that?’♥️
As children grow, and especially by adolescence, we have the illusion of control but whether or not we have any real influence will be up to them. The temptation to control our children will always come from a place of love. Fear will likely have a heavy hand in there too. When they fall, we’ll feel it. Sometimes it will feel like an ache in our core. Sometimes it will feel like failure or guilt, or anger. We might wish we could have stopped them, pushed a little harder, warned a little bigger, stood a little closer. We’re parents and we’re human and it’s what this parenting thing does. It makes fear and anxiety billow around us like lost smoke, too easily.

Remember, they want you to be proud of them, and they want to do the right thing. When they feel your curiosity over judgement, and the safety of you over shame, it will be easier for them to open up to you. Nobody will guide them better than you because nobody will care more about where they land. They know this, but the magic happens when they also know that you are safe and that you will hold them, their needs, their opinions and feelings with strong, gentle, loving hands, no matter what.♥️
Anger is the ‘fight’ part of the fight or flight response. It has important work to do. Anger never exists on its own. It exists to hold other more vulnerable emotions in a way that feels safer. It’s sometimes feels easier, safer, more acceptable, stronger to feel the ‘big’ that comes with anger, than the vulnerability that comes with anxiety, sadness, loneliness. This isn’t deliberate. It’s just another way our bodies and brains try to keep us safe. 

The problem isn’t the anger. The problem is the behaviour that can come with the anger. Let there be no limits on thoughts and feelings, only behaviour. When children are angry, as long as they are safe and others are safe, we don’t need to fix their anger. They aren’t broken. Instead, drop the anchor: as much as you can - and this won’t always be easy - be a calm, steadying, loving presence to help bring their nervous systems back home to calm. 

Then, when they are truly calm, and with love and leadership, have the conversations that will grow them - 
- What happened? 
- What can you do differently next time?
- You’re a really great kid. I know you didn’t want this to happen but here we are. How can you make things right. Would you like some ideas? Do you need some help with that?
- What did I do that helped? What did I do that didn’t help? Is there something that might feel more helpful next time?

When their behaviour falls short of ‘adorable’, rather than asking ‘What consequences they need to do better?’ let the question be, ‘What support do they need to do better.’ Often, the biggest support will be a conversation with you, and that will be enough.♥️
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#parenting #positiveparenting #mindfulparenting #anxietyinkids

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