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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For way too long, there’s been an idea that discipline has to make kids feel bad if it’s going to steer them away from bad choices. But my gosh we’ve been so wrong. 

The idea is a hangover from behaviourism, which built its ideas on studies done with animals. When they made animals scared of something, the animal stopped being drawn to that thing. It’s where the idea of punishment comes from - if we punish kids, they’ll feel scared or bad, and they’ll stop doing that thing. Sounds reasonable - except children aren’t animals. 

The big difference is that children have a frontal cortex (thinking brain) which animals and other mammals don’t have. 

All mammals have a feeling brain so they, like us, feel sad, scared, happy - but unlike us, they don’t feel shame. The reason animals stop doing things that make them feel bad is because on a primitive, instinctive level, that thing becomes associated with pain - so they stay away. There’s no deliberate decision making there. It’s raw instinct. 

With a thinking brain though, comes incredibly sophisticated capacities for complex emotions (shame), thinking about the past (learning, regret, guilt), the future (planning, anxiety), and developing theories about why things happen. When children are shamed, their theories can too easily build around ‘I get into trouble because I’m bad.’ 

Children don’t need to feel bad to do better. They do better when they know better, and when they feel calm and safe enough in their bodies to access their thinking brain. 

For this, they need our influence, but we won’t have that if they are in deep shame. Shame drives an internal collapse - a withdrawal from themselves, the world and us. For sure it might look like compliance, which is why the heady seduction with its powers - but we lose influence. We can’t teach them ways to do better when they are thinking the thing that has to change is who they are. They can change what they do - they can’t change who they are. 

Teaching (‘What can you do differently next time?’ ‘How can you put this right?’) and modelling rather than punishing or shaming, is the best way to grow beautiful little humans into beautiful big ones.

#parenting
Sometimes needs will come into being like falling stars - gently fading in and fading out. Sometimes they will happen like meteors - crashing through the air with force and fury. But they won’t always look like needs. Often they will look like big, unreachable, unfathomable behaviour. 

If needs and feelings are too big for words, they will speak through behaviour. Behaviour is the language of needs and feelings, and it is always a call for us to come closer. Big feelings happen as a way to recruit support to help carry an emotional load that feels too big for our kids and teens. We can help with this load by being a strong, calm, loving presence, and making space for that feeling or need to be ‘heard’. 

When big behaviour or big feelings are happening, whenever you can be curious about the need behind it. There will always be a valid one. Meet them where they without needing them to be different. Breathe, validate, and be with, and you don’t need to do more than that. 

Part of building resilience is recognising that some days and some things are rubbish, and that sometimes those days and things last for longer than they should, but we get through. First we feel floored, then we feel stuck, then we shift because the only choices we have we have are to stay down or move, even when moving hurts. Then, eventually we adjust - either ourselves, the problem, or to a new ‘is’. 

But the learning comes from experience. They can’t learn to manage big feelings unless they have big feelings. They can’t learn to read the needs behind their feelings if they don’t have the space to let those big feelings come back to small enough so the needs behind them can step forward. 

When their world has spikes, and when we give them a soft space to ‘be’, we ventilate their world. We help them find room for their out breath, and for influence, and for their wisdom to grow from their experiences and ours. In the end we have no choice. They will always be stronger and bigger and wiser and braver when they are with you, than when they are without. It’s just how it is.♥️
When kids or teens have big feelings, what they need more than anything is our strong, safe, loving presence. In those moments, it’s less about what we do in response to those big feelings, and more about who we are. Think of this like providing a shelter and gentle guidance for their distressed nervous system to help it find its way home, back to calm. 

Big feelings are the way the brain calls for support. It’s as though it’s saying, ‘This emotional load is too big for me to carry on my own. Can you help me carry it?’ 

Every time we meet them where they are, with a calm loving presence, we help those big feelings back to small enough. We help them carry the emotional load and build the emotional (neural) muscle for them to eventually be able to do it on their own. We strengthen the neural pathways between big feelings and calm, over and over, until that pathway is so clear and so strong, they can walk it on their own. 

Big beautiful neural pathways will let them do big, beautiful things - courage, resilience, independence, self regulation. Those pathways are only built through experience, so before children and teens can do any of this on their own, they’ll have to walk the pathway plenty of times with a strong, calm loving adult. Self-regulation only comes from many experiences of co-regulation. 

When they are calm and connected to us, then we can have the conversations that are growthful for them - ‘Can you help me understand what happened?’ ‘What can help you so this differently next time?’ ‘How can you put things right? Do you need my help to do that?’ We grow them by ‘doing with’ them♥️
Big feelings, and the big behaviour that comes from big feelings, are a sign of a distressed nervous system. Think of this like a burning building. The behaviour is the smoke. The fire is a distressed nervous system. It’s so tempting to respond directly to the behaviour (the smoke), but by doing this, we ignore the fire. Their behaviour and feelings in that moment are a call for support - for us to help that distressed brain and body find the way home. 

The most powerful language for any nervous system is another nervous system. They will catch our distress (as we will catch theirs) but they will also catch our calm. It can be tempting to move them to independence on this too quickly, but it just doesn’t work this way. Children can only learn to self-regulate with lots (and lots and lots) of experience co-regulating. 

This isn’t something that can be taught. It’s something that has to be experienced over and over. It’s like so many things - driving a car, playing the piano - we can talk all we want about ‘how’ but it’s not until we ‘do’ over and over that we get better at it. 

Self-regulation works the same way. It’s not until children have repeated experiences with an adult bringing them back to calm, that they develop the neural pathways to come back to calm on their own. 

An important part of this is making sure we are guiding that nervous system with tender, gentle hands and a steady heart. This is where our own self-regulation becomes important. Our nervous systems speak to each other every moment of every day. When our children or teens are distressed, we will start to feel that distress. It becomes a loop. We feel what they feel, they feel what we feel. Our own capacity to self-regulate is the circuit breaker. 

This can be so tough, but it can happen in microbreaks. A few strong steady breaths can calm our own nervous system, which we can then use to calm theirs. Breathe, and be with. It’s that simple, but so tough to do some days. When they come back to calm, then have those transformational chats - What happened? What can make it easier next time?

Who you are in the moment will always be more important than what you do.
How we are with them, when they are their everyday selves and when they aren’t so adorable, will build their view of three things: the world, its people, and themselves. This will then inform how they respond to the world and how they build their very important space in it. 

Will it be a loving, warm, open-hearted space with lots of doors for them to throw open to the people and experiences that are right for them? Or will it be a space with solid, too high walls that close out too many of the people and experiences that would nourish them.

They will learn from what we do with them and to them, for better or worse. We don’t teach them that the world is safe for them to reach into - we show them. We don’t teach them to be kind, respectful, and compassionate. We show them. We don’t teach them that they matter, and that other people matter, and that their voices and their opinions matter. We show them. We don’t teach them that they are little joy mongers who light up the world. We show them. 

But we have to be radically kind with ourselves too. None of this is about perfection. Parenting is hard, and days will be hard, and on too many of those days we’ll be hard too. That’s okay. We’ll say things we shouldn’t say and do things we shouldn’t do. We’re human too. Let’s not put pressure on our kiddos to be perfect by pretending that we are. As long as we repair the ruptures as soon as we can, and bathe them in love and the warmth of us as much as we can, they will be okay.

This also isn’t about not having boundaries. We need to be the guardians of their world and show them where the edges are. But in the guarding of those boundaries we can be strong and loving, strong and gentle. We can love them, and redirect their behaviour.

It’s when we own our stuff(ups) and when we let them see us fall and rise with strength, integrity, and compassion, and when we hold them gently through the mess of it all, that they learn about humility, and vulnerability, and the importance of holding bruised hearts with tender hands. It’s not about perfection, it’s about consistency, and honesty, and the way we respond to them the most.♥️

#parenting #mindfulparenting

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