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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The more your young one is able to verbalise what their anxiety feels like, the more capacity they will have to identify it, acknowledge it and act more deliberately in response to it. With this level of self-awareness comes an increased ability to manage the feeling when it happens, and less likelihood that the anxiety will hijack their behaviour. 

Now - let’s give their awareness some muscle. If they are experts at what their anxiety feels like, they are also experts at what it takes to be brave. They’ve felt anxiety and they’ve moved through it, maybe not every time - none of us do it every time - maybe not even most times, but enough times to know what it takes and how it feels when they do. Maybe it was that time they walked into school when everything in them was wanting to walk away. Maybe that time they went in for goal, or down the water slide, or did the presentation in front of the class. Maybe that time they spoke their own order at the restaurant, or did the driving test, or told you there would be alcohol at the party. Those times matter, because they show them they can move through anxiety towards brave. They might also taken for granted by your young one, or written off as not counting as brave - but they do count. They count for everything. They are evidence that they can do hard things, even when those things feel bigger than them. 

So let’s expand those times with them and for them. Let’s expand the wisdom that comes with that, and bring their brave into the light as well. ‘What helped you do that?’ ‘What was it like when you did?’ ‘I know everything in you wanted to walk away, but you didn’t. Being brave isn’t about doing things easily. It’s about doing those hard things even when they feel bigger than us. I see you doing that all the time. It doesn’t matter that you don’t do them every time -none of us are brave every time- but you have so much courage in you my love, even when anxiety is making you feel otherwise.’

Let them also know that you feel like this too sometimes. It will help them see that anxiety happens to all of us, and that even though it tells a deficiency story, it is just a story and one they can change the ending of.
During adolescence, our teens are more likely to pay attention to the positives of a situation over the negatives. This can be a great thing. The courage that comes from this will help them try new things, explore their independence, and learn the things they need to learn to be happy, healthy adults. But it can also land them in bucketloads of trouble. 

Here’s the thing. Our teens don’t want to do the wrong thing and they don’t want to go behind our backs, but they also don’t want to be controlled by us, or have any sense that we might be stifling their way towards independence. The cold truth of it all is that if they want something badly enough, and if they feel as though we are intruding or that we are making arbitrary decisions just because we can, or that we don’t get how important something is to them, they have the will, the smarts and the means to do it with or without or approval. 

So what do we do? Of course we don’t want to say ‘yes’ to everything, so our job becomes one of influence over control. To keep them as safe as we can, rather than saying ‘no’ (which they might ignore anyway) we want to engage their prefrontal cortex (thinking brain) so they can be more considered in their decision making. 

Our teens are very capable of making good decisions, but because the rational, logical, thinking prefrontal cortex won’t be fully online until their 20s (closer to 30 in boys), we need to wake it up and bring it to the decision party whenever we can. 

Do this by first softening the landing:
‘I can see how important this is for you. You really want to be with your friends. I absolutely get that.’
Then, gently bring that thinking brain to the table:
‘It sounds as though there’s so much to love in this for you. I don’t want to get in your way but I need to know you’ve thought about the risks and planned for them. What are some things that could go wrong?’
Then, we really make the prefrontal cortex kick up a gear by engaging its problem solving capacities:
‘What’s the plan if that happens.’
Remember, during adolescence we switch from managers to consultants. Assume a leadership presence, but in a way that is warm, loving, and collaborative.♥️
Big feelings and big behaviour are a call for us to come closer. They won’t always feel like that, but they are. Not ‘closer’ in an intrusive ‘I need you to stop this’ way, but closer in a ‘I’ve got you, I can handle all of you’ kind of way - no judgement, no need for you to be different - I’m just going to make space for this feeling to find its way through. 

Our kids and teens are no different to us. When we have feelings that fill us to overloaded, the last thing we need is someone telling us that it’s not the way to behave, or to calm down, or that we’re unbearable when we’re like this. Nup. What we need, and what they need, is a safe place to find our out breath, to let the energy connected to that feeling move through us and out of us so we can rest. 
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But how? First, don’t take big feelings personally. They aren’t a reflection on you, your parenting, or your child. Big feelings have wisdom contained in them about what’s needed more, or less, or what feels intolerable right now. Sometimes it might be as basic as a sleep or food. Maybe more power, influence, independence, or connection with you. Maybe there’s too much stress and it’s hitting their ceiling and ricocheting off their edges. Like all wisdom, it doesn’t always find a gentle way through. That’s okay, that will come. Our kids can’t learn to manage big feelings, or respect the wisdom embodied in those big feelings if they don’t have experience with big feelings. 
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We also need to make sure we are responding to them in the moment, not a fear or an inherited ‘should’ of our own. These are the messages we swallowed whole at some point - ‘happy kids should never get sad or angry’, ‘kids should always behave,’ ‘I should be able to protect my kids from feeling bad,’ ‘big feelings are bad feelings’, ‘bad behaviour means bad kids, which means bad parents.’ All these shoulds are feisty show ponies that assume more ‘rightness’ than they deserve. They are usually historic, and when we really examine them, they’re also irrelevant.
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Finally, try not to let the symptoms of big feelings disrupt the connection. Then, when calm comes, we will have the influence we need for the conversations that matter.
"Be patient. We don’t know what we want to do or who we want to be. That feels really bad sometimes. Just keep reminding us that it’s okay that we don’t have it all figured out yet, and maybe remind yourself sometimes too."
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 #parentingteens #neurodevelopment #positiveparenting #parenting #neuronurtured #braindevelopment #adolescence  #neurodevelopment #parentingteens
Would you be more likely to take advice from someone who listened to you first, or someone who insisted they knew best and worked hard to convince you? Our teens are just like us. If we want them to consider our advice and be open to our influence, making sure they feel heard is so important. Being right doesn't count for much at all if we aren't being heard.
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Hear what they think, what they want, why they think they're right, and why it’s important to them. Sometimes we'll want to change our mind, and sometimes we'll want to stand firm. When they feel fully heard, it’s more likely that they’ll be able to trust that our decisions or advice are given fully informed and with all of their needs considered. And we all need that.
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 #positiveparenting #parenting #parenthood #neuronurtured #childdevelopment #adolescence 
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