As we come to the end of another busy year, I’ve been pondering on how things have changed over the last few years, and especially in 2017. Today is also the last day of my role as the SA 2017 Australian Of The Year, and whilst it should have been one of the proudest years of my life, it was also one of the toughest. But I made it, and it has made me so much stronger, as well as ensuring I tidied up my contacts list, which also meant blocking a number of people who were not at all kind to me, although to my face I have no doubt would still pretend to be ‘friends’.
Yesterday, I was inspired to write the quote featured here, and it was indeed enlightening also going through the process. My life has been so much gentler on my soul since removing contact with the group who lied about me. There is much to write about living with dementia, and I read many other blogs, in an effort to continue to be reminded that we all experience it differently. Yesterday, I replied privately to a newer online friend Minna’s blog, part of which am sharing here as it felt relevant to, and I have her permission to share as well:
Assets… not deficits
Only this week I had a phone meeting with someone (can’t now remember who), who said to me that many researchers and doctors still say to each other they believe ‘our’ diagnosing doctors must have been wrong. How insulting to the highly qualified medical specialists around the world, and how ignorant to still believe it is not possible to live positively with dementia. Anyway, it is not easy to change others, especially those who are ignorant, or who choose not to look outside of their boxes; all we can do is change ourselves, and our reactions to those with such closed minds. But, this kind of bullying is harmful, and cruel.
In 2012, I wrote a blog titled Impairment in view, and the worrying thing about re-reading it was the realisation that some things are worse. The good thing is that by focusing on my strengths and accessing disAbility supports to continue functioning in the areas that are important to me, I have remained functional. Even my specialists are now interested in how I have ‘managed’ dementia, and I can see in my own life, the real power of neuroplasticity and the pathway I have self prescribed. Christine Bryden, an Australian woman also living with dementia (diagnosed approximately 23 years ago), recently graduated for her Doctorate, proving very clearly that by focusing on what we can do, many people with dementia can still live exceptional lives.
Although I was paddling hard in 2012, and thinking of being positive in spite of dementia, I was still, back then, thinking too much about my deficits, or at least, others were forcing me to, to ‘prove’ or ‘show publicly’ some of my deficits. Having had to formally prove I was not a medical fraud in December 2017, it remains an issue that publicly living positively with dementia ensures people don’t believe you have it. Sometimes, even others with dementia will question you. Hopefully, in my next life, that will have changed, and like cancer, when you do well, everyone will cheer us on.
Whilst there are more things I cannot do as well as I used to (if at all), there are still many things I can do, and for now, I must focus on them to maintain my sense of self and purpose. Today, it felt helpful emotionally to make a list of some of the things I am still able to do:
- Being kind to others
- Being more creative than I ever was before dementia (I was once told I was as creative as a brick!)
- Typing (thank goodness for spell check!), therefore, blogging, writing and publishing
- Speaking, although not as fluently as it used to be
- Reading, although more slowly, and with more difficulty, requiring more disability support
- Cooking, although not to the level I was once capable of, but with chilli, everything is bearable to eat!
- Being part of a great team who runs DAI
- Writing poetry
Welcome 2018: Staying focused on being positive
I am more in love with my dear husband (DH) than I was when we married, which will be 20 years in 2018, and have a wonderful relationship with our two sons, and a number of very close friends who I still get to meet in person occasionally, although never often enough.
So for 2018, along with being much more focused on Living Beyond Dementia™ which will include more stringently adhering to the Bredesen Protocol, I will be even more focused on my assets, and where possible, will ignore or find support for my cognitive and physical disabilities. People outside of DAI have also set up support groups for anyone wanting to know more about reversing dementia, and as we start to think about dementia as a chronic illness, and the risk reduction evidence is growing, lifestyle changes and rehabilitation are the closest thing to HOPE that I can see in the near future. I intend to stay focused on being positive!
Finally, I will also remind myself to accept who are my ‘real’ close family and friends, through the more positive process of imagining life without them.