Finding my tribe…

I often say that there is nothing like a shared experience to bring people together. I know when I was a very young first time Mum – at age 20 – that getting together with other Mums and sharing our experiences and things that worked for us, was really useful. You knew that others were coping with sleepless nights, teething and a host of other things. It gave me confidence to be a Mum because even those who were older or maybe had other children still had things they needed to learn.

I have worked with people with dementia and their carers too in a previous job and in that job we held groups for carers and groups for people in the early stages of dementia. It was amazing how – without exception – the people attending started off as strangers, but through sharing their experiences and in hearing each other’s stories, they connected. You could see people sitting and nodding as each of them took turns to speak. You could see them start to realise that others in the room really did identify with what they were experiencing. It wasn’t long before the group members would greet each other like friends and in the case of the spouses dropping off their participant in the ‘memory group’ friendships formed and often they would meet for coffee at a local cafe and connect. They really looked forward to their weekly get togethers both those at the group and the supporters.

When I started my own personal journey with Parkinson’s, very soon after diagnosis my husband and I attended a Parkinson’s Conference in Rotorua. I was a bit nervous about attending and not knowing what might be in store and how I would cope perhaps with some of the content. I was so surprised when I was sitting at a table with my husband and a bunch of strangers that I remember thinking, ‘these are my people’. People who know what it is to be a Parkies person or a partner of a Parkies person. People who selflessly shared their thoughts, feelings and challenges with this condition. I felt safe. I felt part of a caring, wonderful group of people who were like me. It was a touching, supportive and amazing opportunity to see people still trying to live their best lives and not letting this condition beat them down.

When I started my Blog, the reason for doing it was twofold. It was an outlet for me and an opportunity – I hoped – to share my journey with anyone who followed me and to be able to help others who were also learning to deal with this unwelcome intruder in our lives. Nothing pleases me more than hearing that my Blog has made a difference to someone. Touched someone’s life. Perhaps even given them the words they couldn’t find to describe how they were feeling.

I was reading an entry in a Blog I follow, ‘Perky Parkie Blog’ and she has a very similar outlook to my own. She says, “Feeling alone after my diagnosis, I was inundated with negative information and fear of the unknown. I wanted to find a space where I can share my journey with Parkinson’s the good and the bad, but with a sense of lightheartedness.  Doom and gloom need not apply here.” As I read those words, I felt that I had found a kindred spirit. A person who is walking a similar path and someone I feel connected to by her sharing her personal journey with the Parkinson’s Community that follows her.

In connecting with people with Parkinson’s and those that are supporting someone with Parkinson’s through a Facebook Group, through my Blog and through other Blogs I follow, I feel a deep sense of community and connection that is hard to explain. Every comment I get that says that I am making a difference in someone’s life is worth more than anything money can buy. It has become my purpose and an important part of my being.

I used the title ‘Finding my Tribe’ for this post. I tried looking up the word ‘tribe’ online and in many instances the focus is on shared genetics. But mere genetics doesn’t necessarily give us a common experience or a strong connection. I know many families where the connections are tenuous at best. Don’t get me wrong. I love my husband and family very much and I know that they love me, but their part in this Parkinson’s life I have is as an observer, a supporter, a helper if needed in the future. However, they can never perhaps fully understand how it feels to have a body invaded by this insidious condition and to fight the fear and forge ahead with life’s challenges on a daily basis.

So, I found this quote from a website and I rather liked it. “Tribe is a group of people that come together who share common goals and similar values. Tribe’s true meaning is bigger than any one person.” I hope that those that follow my Blog and other’s Blogs feel a sense of connection too. That they don’t feel so alone in the world. That through sharing our individual experiences and learning from each other we have a tribe to support us when things are tough, but also sharing our successes and triumphs.

So, you who are reading my Blog, may we continue to help and support each other for a long time to come.

Welcome to the Tribe.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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