Ray of Hope: A Backstory Perspective

How we met 

At the beginning of Feb 21, I saw an e-mail from a familiar name in my inbox. I was 17 when I met Ana María Tamayo briefly as an AFS student, I was returning from a year abroad, and she was departing to start hers. Ana Maria’s e-mail mentioned that a mutual friend had suggested she and her husband Ray Raymond Feeney had a chat with me as I worked with applied complexity. Ana Maria had taken the time to read through the site content and thought I could help them. She even quoted that they could identify with an opening quote “Change is like a wave that keeps getting bigger and bigger, there is no way to avoid it, but there are ways to surf it.” www.nurturingchoicefulness.co.nz. 

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Annick Vanblaere @ Pixabay

Ana Maria briefly explained that her husband Ray had been diagnosed with Parkinson’s a few years back, but things were dramatically changing; they had to make some decisions around their older son, they were in the middle of the pandemic in Lima, Peru, and she had just turned down a job to spend more time at home. They wondered how to best deal with the conundrum that they were facing.  

As I stared at the e-mail, I thought, I don’t do this. I don’t work with families on this or any other issues. Yes, I can see the complexity of their situation, but I don’t do this. I only work for businesses/ organisations in an unconsulting capacity and as executive possibility coach/board chair of one; what do I know about chronic conditions? Despite that, I agree to meet them. 

I reminded myself that complexity is about variance, dealing with the unexpected produced by non-linearity in changing environments and multiple forces in play.

The first of many zoom meetings 

What?

I started with the disclaimer that I did not work in that field. I could see from my screen that they were both in a state of suffering that feeling stuck brings with it. Ray was so quiet and was often looking down. Ana Maria did most of the talking. They asked for resources they could read, and at that moment, I thought that was not “fit for function” or what was needed. 

So What? 

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Ray’s Lego Image

We looked at their system’s history during that and subsequent meetings. In complexity science, understanding history is essential as it creates conditions for future interactions. Ray started giving voice to what was and is and, most importantly, what pattern Ana Maria and Ray wanted to create together. 

We continued with our chats, inviting them both to participate in HSD Essentials, a program that we were launching with my colleague and friend Wendy C. Morris, MA They also explored other forums, such as Inquiry is the Answer run by the HSD Institute. 

Ana Maria & Ray took what they learned there – such as the Adaptive Action Cycle and started applying it in their daily lives—as when they had made plans for the day, they soon realised that the meds were not working, and Ray couldn’t get out of bed. In spite of being disappointed by not being able to do what they planned, they ask themselves, what is happening, so what does this mean for the plans and themselves, and now what do we do? Ana Maria and Ray shared that they go through a range of emotions, from anger to serenity. Intentionally, they are trying to develop their adaptive capacity to take these instances with good humour; she says this is an ever work in progress. They discovered that they didn’t have to react, but they could choose how to respond to what is a situation “that is like a wave that keeps getting bigger and bigger, there is no way to avoid it, but there are ways to surf it.” I finally understood what Ana Maria saw, which I couldn’t see when they first approached me.

Now What? Something new emerges. 

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Alex Gorin @ Unsplash

In HSD/E, we use the word “containers” to describe how things are connected and held together. Ana Maria and Ray discovered that the spaces they attended for those confronting Parkinson’s mainly were talking about what prescriptions they were on and their dosage and potential cures or current research. Ray and Ana Maria are based in Peru, and some medicines talked about were unavailable, and if available, access to them was prohibitive due to their costs. One thing they learned through their experience was the impact that Ray’s condition had had on their lives, and the tensions arising as a couple, such as

 do now < > do later. 

support < > be in charge. 

work on my thing < > work on our project 

plan for a week < > plan for the next hour 

take care of me < > take care of us. 

and to learn how to manage them. 

And Then What? 

Ana Maria & Ray discovered that it could be helpful to others to create space to talk about and share how people with the condition were thinking about their new realities and what they were finding helpful to living their lives more fully.  

Almost a year later, after we first met, Ana Maria and Ray launched their “Dare with Parkinson’s.” a space in Spanish for those with Parkinson’s to come with their carers to share and learn from others. This space was not about medications but how to thrive in a space where the waves get bigger and bigger, and you don’t have a choice but to continue to surf and surf. They realised that whoever has the condition is part of a more extensive system (family), Parkinson’s is a new agent that reshapes those patterns of interaction, and new ones are created. Some of those patterns can be helpful, and some aren’t. It depends so much on what you are paying attention to and your intention.  

To my delight, two of our HSDE students Marcela B. García and Marina Olabarrieta supported Ray and Ana Maria in their “Atrevete con Parkinson”. Ana Maria and Ray had become point attractors. 

Ray and Ana Maria became POSSIBLE, grounded on their reality, stepping into the future with what they knew and open to exploring what was possible.  

When they first shared their “Ray of Hope” video with me, they hoped they could attend the Parkinson’s convention in Barcelona in July 2023. A few months later, things changed, and they re-evaluated what was most helpful to them. Their lives are many adaptive cycles, some short lasting a few minutes, long cycles that may take a few months and anything in between.

Inspiration

I invite you to see the video of Ray of Hope

The Gold Dust 

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Benjamin Wong @ Unsplash

Here is where the student becomes the teacher, and the teacher realises she has been the student all along. And that those roles are constantly in flux. My thanks and gratitude to Ana Maria & Ray for sending that e-mail. Our collaboration has reinforced my belief that we all can help create conditions, sometimes unexpected, for people to thrive in their own way. 

Postscript 

  • The story above reflects Ana Maria’s & Ray’s editing comments. 
  • As part of their feedback, they also shared that the Spanish Federation of Parkinson’s has just launched a campaign that says: Dame mi Tiempo, Dame mi Espacio, Dame mi Dignidad (Give me Time, Give me my Space, Give me my Dignity). For Ana Maria, this message sheds light and opens the possibility of exploring what ‘productivity’ is all about. It creates conditions for us to examine if “doing things fast” is the only way to measure our contribution/productivity as diverse beings. Parkinson’s has adverse impact on the employability of those who suffer from the condition. 

Related Videos

Ana Maria sharing her experience as support person: https://www.youtube.com/watch?v=yC2tx8KkGt8

Additional Sources of Information about Parkinson’s: https://www.pmdalliance.org/sabes/

Global Day of Parkinson’s: https://damemitiempo.org/

Information about HSD

HSD Essentials: https://hsdessentials.com/

Human Systems Dynamics Institute: https://www.hsdinstitute.org/