They say it takes a village to raise a child, this is true. For a child to grow and flourish, they need the familiarity and support of a wide range of people to feel safe and supported. Not only that, but gathering with others with similar values and interests allows us to grow and develop as individuals and learn from each other. So too, just as a child learns from the adults around them, adults can also learn from children who in their innocence look at the world with different eyes. Children learn – if supported to do so – in their questioning of the things that they learn and can make us adults step back and say “why do we do this the way we do?” Inter-generational learning gives both adults and children opportunities to learn from each other and grow.
Just as a village raises a child, those of us in adulthood benefit from finding our tribe. About five years ago and newly diagnosed, my husband and I attended a Parkinson’s Conference in Rotorua, where I had grown up as a teenager. Being in the place where I grew up made me quite nostalgic. As the conference went on different presenters gave us their wisdom and the benefit of their experience. We also had opportunities to discuss our individual Parkinson’s journeys with those at our table. I remember sitting there and thinking “I have found my tribe”. It felt so warm and comforting to be gathered in that space with people who were all affected in some way by Parkinson’s. Some were more advanced than others, but all had the common bond of their individual experiences and lives with Parkinson’s. Unfortunately, there hasn’t been another New Zealand conference – as far as I know – as I would love the opportunity to attend if there was.
Today, I went to a special event for someone close to me. They were celebrating a special event in their faith journey and they and a few others were being baptised. I could see as I looked at their faces as they spoke, as they prayed, as they sang, that this moment in time was a special moment for them. I myself am not a particularly religious person, but I could see how much they all supported each other and it was a heartwarming experience to be present and to witness their joy. That congregation was their tribe, with a sharing of their common bond and their sense of belonging.
But, it is not only those with a religious connection, or a shared diagnosis that can become your tribe. Any environment where we feel cared for and welcomed and with people who make us feel valued and part of our chosen group can provide us with the tribe we need. My connections in this community I feel are growing stronger the longer we live here. My bowling club, my group of ladies who love playing Rummikub, the ladies I swim with in the mornings are all part of my tribe.
So, while conferences and workshops about Parkinson’s are valuable and well worth accessing, the real expertise is – for me – those who are directly experiencing Parkinson’s in their lives. Knowing that the people that are before me, have their own wisdom to share. Their knowledge of what they have tried, what they are going to try or perhaps those things they wished they hadn’t is so valuable. Professional ‘experts’ can extol the virtues of exercise, or medications or DBS surgery, but nothing speaks more to me than personal experiences of these things.
I wonder, have you found your tribe?
Are they linked with you because of your diagnosis?
Are they linked with you through sport or social activities?
Are they a part of your lives through spiritual or religious beliefs?
This journey is a tough one, as we adjust to changes and challenges, we will need to ensure that we do not self-isolate. It is important that we keep up those connections that have supported us both prior to and following our diagnosis. To do this life with Parkinson’s alone would make a challenging journey even more difficult without support.
Look around you. Where could you find your tribe?
My journey with Parkinsons 