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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings

Being Brave and Advocate to Advocate

Today I’m writing about two things, the first being about being brave. I had to learn to be brave after my husband died 15 years ago, I was young, it took a lot of bravery to wade back out into the world, to re-invent who I was, to build a new life a solo life. It was not at all what I wanted to do, I wanted to hide, I didn’t want to do life on my own, but finding my way to be brave, I eventually did, or at least felt like I was.

Then came my Dementia Diagnosis, again, my world was shattered, again, not wanting to do this journey, again having to face that the only way was with bravery. So finding my brave side scared much of the time, I put on the brave armour and sought out a new life once again, again as when my husband died, I was no longer the same person, dementia diagnosis did the same thing, how could it not, life as I knew it ended that day. ( I believe with 100% certainty that if and when we finally see the delivery of diagnosis change and provide the support given to others with serious illness and when we start helping people live with their illness instead of telling them to get ready to die, we will then have the ability to have our lives change at a slower rate and we can grow into living with our illness) but at this time that is not the reality, you are told get your affairs in order, there is nothing we can do. ( Those of us living with the illness now that is not the reality, there is much we can do, much that can help slow the progression, much that can help us live independently and maintain our lives for longer.) But instead, we are left to figure it all out on our own, which usually means a time of depression, fear and anxiety, but most ( sadly not all) find our way and find our way to brave our new reality. I have never met a more resilient and brave bunch.

I had to be brave again, this time on a much lesser degree, but still having to find the will to be brave enough again to wade into unchartered waters. I think maybe the pandemic will find many finding themselves in places that require them to go beyond what is comfortable and try and do things that require them to be brave. Today was that day for me, I managed one haircut in over a year, for me, who’s hair is baby fine, ( always has been), growing my hair to any length is near impossible. So today with inspiration from Susan Macauley and encouragement, I summoned up my brave and I cut my hair, After the first chop of the scissors, it was actually a freeing feeling, total abandonment. The results are the picture at the top of this blog.

I love it, it feels great, I was elated. Yes I know all the hairdressers out there are cringing, but with an immune system that is compromised, living in my bubble of one, means a trip to the hairdresser was not and likely will not be in cards for me for a long time to come. So I feel uplifted knowing that if I just am brave many things can happen.

Secondly, I want to talk about the advocates and all the great work they do. There is no glory in it, there is just the knowledge that maybe you can help make a difference for others.

It does provide hope and purpose, which is important for anyone, it is rewarding when you meet someone who is struggling and you are able to support them to finding hope and purpose. It is rewarding when you see any small and usually, they are small incremental changes happen. It feeds that part of ourselves that we all need and want to feel that we are of value, that we are contributing to society in a positive manner.

It also makes us vulnerable, if we are not willing to follow the scripts many organizations want us to we can be subjected to some hurtful discouraging remarks.

This is when it becomes so evident just how important our fellow advocates are to us. It is far more than just discussing the issues, planning what’s next. It is about friendships, laughter and tears. It’s about picking each other up when we no longer feel we can keep fighting for the change we so desperately need. It’s about being each other cheerleaders when we get those small wins, and being the mentors to those diagnosed who join us in using our voices and it’s about being that shoulder when we feel the weight of it all sitting on us.

I know I could not continue doing what I do without the support, compassion and caring of all those advocates I stand with. I only hope that I can give them as much as I have received.

By Chrissy's Journey

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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