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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“Karen Young - Hey Sigmund has such a wonderful way with words especially around anxiety. This is her latest beautiful picture book that explains anxiety through the lens of the Polyvagal theory using the metaphor of a house. This shows how sometimes anxiety can be hard to notice. I think this book can help kids and teens better understand stress and anxiety. I loved it! This would be great for homes, schools and in libraries.
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Of course we love them, no matter what - but they need to feel us loving them, no matter what. Especially when they are acting in unlovable ways, or saying unlovable things. Especially then.

This is not ‘rewarding bad behaviour’. To think this assumes that they want to behave badly. They don’t. What they want is to feel calm and safe again, but in that moment they don’t have the skills to do that themselves, so they need us to help them. 

It’s leading with love. It’s showing up, even when it’s hard. The more connected they feel to us, the more capacity we will have to lead them - back to calm, into better choices, towards claiming their space in the world kindly, respectfully, and with strength. 

This is not about dropping the boundary, but about holding it lovingly, ‘I can see you’re doing it tough right now. I’m right here. No, I won’t let you [name the boundary]. I’m right here. You’re not in trouble. We’ll get through this together.’

If you’re not sure what they need, ask them (when they are calm), ‘When you get upset/ angry/ anxious, what could I do that would help you feel loved and cared for in that moment? And this doesn’t mean saying ‘yes’ to a ‘no’ situation. What can I do to make the no easier to handle? What do I do that makes it harder?’♥️
Believe them AND believe in them. 

‘Yes this is hard. I know how much you don’t want to do this. It feels big doesn’t it. And I know you can do big things, even when it feels like you can’t. How can I help?’

They won’t believe in themselves until we show them what they are capable of. For this, we’ll have to believe in their ‘can’ more than they believe in their ‘can’t’.♥️
Sometimes it feels as though how we feel directs what we do, but it also works the other way: What we do will direct how we feel. 

When we avoid, we feel more anxious, and a bigger need to avoid. But when we do brave - and it only needs to be a teeny brave step - we feel brave. The braver we do, the braver we feel, and the braver we do… This is how we build brave - with tiny, tiny uncertain steps. 

So, tell me how you feel. All feelings are okay to be there. Now tell me what you like to do if your brave felt a little bigger. What tiny step can we take towards that. Because that brave is always in you. Always. And when you take the first step, your brave will rise bigger to meet you.♥️
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#anxietyinkids #consciousparenting #parentingtips #gentleparent #parentinglife #mindfulparenting #childanxiety #heywarrior
If anxiety has had extra big teeth lately, I know how brutal this feels. I really do. Think of it as the invitation to strengthen your young ones against anxiety. It’s not the disappearance of brave, or the retreat of brave. It’s the invitation to build their brave.

This is because the strengthening against anxiety happens only with experience. When the experience is in front of you, it can feel like bloodshed. I know that. I really do. But this is when we fight for them and with them - to show them they can do this.

The need to support their avoidance can feel relentless. But as long as they are safe, we don’t need to hold them back. We’ll want to, and they’ll want us to, but we don’t need to. 

Handling the distress of anxiety IS the work. Anxiety isn’t the disruption to building brave, it’s the invitation to build brave. As their important adult who knows they are capable, strong, and brave, you are the one to help them do that.

The amygdala only learns from experience - for better or worse. So the more they avoid, the more the amygdala learns that the thing they are avoiding is ‘unsafe’, and it will continue to drive a big fight (anger, distress) or flight (avoidance) response. 

On the other hand, when they stay with the discomfort of anxiety - and they only need to stay with it for a little longer each time (tiny steps count as big steps with anxiety) - the amygdala learns that it’s okay to move forward. It’s safe enough.

This learning won’t happen quickly or easily though. In fact, it will probably get worse before it gets better. This is part of the process of strengthening them against anxiety, not a disruption to it. 

As long as they are safe, their anxiety and the discomfort of that anxiety won’t hurt them. 
What’s important making sure they don’t feel alone in their distress. We can do this with validation, which shows our emotional availability. 

They also need to feel us holding the boundary, by not supporting their avoidance. This sends the message that we trust their capacity to handle this.

‘I know this feels big, and I know you can do this. What would feel brave right now?’♥️

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