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 shows up to check that you’re okay, not to tell you that you’re not. It’s your brain’s way of saying, ‘Not sure - there might be some trouble here, but there might not be, but just in case you should be ready for it if it comes, which it might not – but just in case you’d better be ready to run or fight – but it might be totally fine.’ Brains can be so confusing sometimes! 

You have a brain that is strong, healthy and hardworking. It’s magnificent and it’s doing a brilliant job of doing exactly what brains are meant to do – keep you alive. 

Your brain is fabulous, but it needs you to be the boss. Here’s how. When you feel anxious, ask yourself two questions:

- ‘Do I feel like this because I’m in danger or because there’s something brave or important I need to do?’

- Then, ‘Is this a time for me to be safe (sometimes it might be) or is this a time for me to be brave?

And remember, you will always have ‘brave’ in you, and anxiety doesn’t change that a bit.♥️

#positiveparenting #mindfulparenting #parenting #childanxiety #heywarrior #heywarriorbook
The temptation to fix their big feelings can be seismic. Often this is connected to needing to ease our own discomfort at their discomfort, which is so very normal.

Big feelings in them are meant to raise (sometimes big) feelings in us. This is all a healthy part of the attachment system. It happens to mobilise us to respond to their distress, or to protect them if their distress is in response to danger.

Emotion is energy in motion. We don’t want to bury it, stop it, smother it, and we don’t need to fix it. What we need to do is make a safe passage for it to move through them. 

Think of emotion like a river. Our job is to hold the ground strong and steady at the banks so the river can move safely, without bursting the banks.

However hard that river is racing, they need to know we can be with the river (the emotion), be with them, and handle it. This might feel or look like you aren’t doing anything, but actually it’s everything.

The safety that comes from you being the strong, steady presence that can lovingly contain their big feelings will let the emotional energy move through them and bring the brain back to calm.

Eventually, when they have lots of experience of us doing this with them, they will learn to do it for themselves, but that will take time and experience. The experience happens every time you hold them steady through their feelings. 

This doesn’t mean ignoring big behaviour. For them, this can feel too much like bursting through the banks, which won’t feel safe. Sometimes you might need to recall the boundary and let them know where the edges are, while at the same time letting them see that you can handle the big of the feeling. Its about loving and leading all at once. ‘It’s okay to be angry. It’s not okay to use those words at me.’

Ultimately, big feelings are a call for support. Sometimes support looks like breathing and being with. Sometimes it looks like showing them you can hold the boundary, even when they feel like they’re about to burst through it. And if they’re using spicy words to get us to back off, it might look like respecting their need for space but staying in reaching distance, ‘Ok, I’m right here whenever you need.’♥️
We all need certain things to feel safe enough to put ourselves into the world. Kids with anxiety have magic in them, every one of them, but until they have a felt sense of safety, it will often stay hidden.

‘Safety’ isn’t about what is actually safe or not, but about what they feel. At school, they might have the safest, most loving teacher in the safest, most loving school. This doesn’t mean they will feel enough relational safety straight away that will make it easier for them to do hard things. They can still do those hard things, but those things are going to feel bigger for a while. This is where they’ll need us and their other anchor adult to be patient, gentle, and persistent.

Children aren’t meant to feel safe with and take the lead from every adult. It’s not the adult’s role that makes the difference, but their relationship with the child.

Children are no different to us. Just because an adult tells them they’ll be okay, it doesn’t mean they’ll feel it or believe it. What they need is to be given time to actually experience the person as being safe, supportive and ready to catch them.

Relationship is key. The need for safety through relationship isn’t an ‘anxiety thing’. It’s a ‘human thing’. When we feel closer to the people around us, we can rise above the mountains in our way. When we feel someone really caring about us, we’re more likely to open up to their influence
and learn from them.

But we have to be patient. Even for teachers with big hearts and who undertand the importance of attachment relationships, it can take time.

Any adult at school can play an important part in helping a child feel safe – as long as that adult is loving, warm, and willing to do the work to connect with that child. It might be the librarian, the counsellor, the office person, a teacher aide. It doesn’t matter who, as long as it is someone who can be available for that child at dropoff or when feelings get big during the day and do little check-ins along the way.

A teacher, or any important adult can make a lasting difference by asking, ‘How do I build my relationship with this child so s/he trusts me when I say, ‘I’ve got you, and I know you can do this.’♥️
There is a beautiful ‘everythingness’ in all of us. The key to living well is being able to live flexibly and more deliberately between our edges.

So often though, the ‘shoulds’ and ‘should nots’ we inhale in childhood and as we grow, lead us to abandon some of those precious, needed parts of us. ‘Don’t be angry/ selfish/ shy/ rude. She’s not a maths person.’ ‘Don’t argue.’ Ugh.

Let’s make sure our children don’t cancel parts of themselves. They are everything, but not always all at once. They can be anxious and brave. Strong and soft. Angry and calm. Big and small. Generous and self-ish. Some things they will find hard, and they can do hard things. None of these are wrong ways to be. What trips us up is rigidity, and only ever responding from one side of who we can be.

We all have extremes or parts we favour. This is what makes up the beautiful, complex, individuality of us. We don’t need to change this, but the more we can open our children to the possibility in them, the more options they will have in responding to challenges, the everyday, people, and the world. 

We can do this by validating their ‘is’ without needing them to be different for a while in the moment, and also speaking to the other parts of them when we can. 

‘Yes maths is hard, and I know you can do hard things. How can I help?’

‘I can see how anxious you feel. That’s so okay. I also know you have brave in you.’

‘I love your ‘big’ and the way you make us laugh. You light up the room.’ And then at other times: ‘It can be hard being in a room with new people can’t it. It’s okay to be quiet. I could see you taking it all in.’

‘It’s okay to want space from people. Sometimes you just want your things and yourself for yourself, hey. I feel like that sometimes too. I love the way you know when you need this.’ And then at other times, ‘You looked like you loved being with your friends today. I loved watching you share.’

The are everything, but not all at once. Our job is to help them live flexibly and more deliberately between the full range of who they are and who they can be: anxious/brave; kind/self-ish; focussed inward/outward; angry/calm. This will take time, and there is no hurry.♥️

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