Following on from my last blog, I thought I’d share more on how dementia has changed my life, in particular how it has mostly been for the better. For instance, the image here of Snowy (TinTins dog) is a gift that was selected by Francis Wong, a wonderful colleague and now someone I am very proud to call a dear friend, as a gift from the Alzheimer’s Disease Association in Singapore. If I had not been diagnosed with dementia, it is very unlikely I would have met Francis, and my life is enriched by knowing him and his family.
Thanks dementia, for the gift of true friends.
There are so many other ‘new’ friends I have made, which I believe is 100% due to having dementia. Dementia has also helped me find inner strength and to form a stronger and even more meaningful bonds of love and connections with some very special life long friends and a few family members, as well as with my dear husband and children. These relationships have been enhanced and strengthened, with a greater depth of honesty and love, for which I have very few words to describe…
Thanks dementia, for the gift of deeper love.
TinTin and his dog Snowy are Adventurers, and I definitely feel like an adventurer now as well, often heading into the dark and sometimes dangerous wilds of dementia activism. And make no mistake, being an activist is dangerous, and is rarely fun; it is very easy to get into trouble. It has also ensured varying degrees of bullying, public defamation, and what felt like jealousy and real hatred towards me. I’ve worked hard to rise above all of that, and instead of being focused on those who are unkind, I’ve become more resilient. Dementia has definitely ensured more personal growth, and given me a clarity about life that was previously not there.
Thanks dementia, for the gift of becoming an Adventurer.
Becoming an accidental advocate, then an activist, and being exposed to just how hard it is to create change, and also how easy it seems to be to create ‘enemies’ because of being willing to speak up against things I believe to be wrong, has taught me so much. It’s made me more resilient, more determined, and more aware of how to better manage my own emotional health, in part by focusing more on my assets and truly discovering my real friends. It’s even taught me how to be more diplomatic, whilst being more direct. The social justice gene probably comes from my maternal aunt, who is still volunteering and just last week turned 91. In her own quiet way, she has been someone who has brought about change and improved the world of hundreds of people in her own community, by her volunteering and actions, and I love and admire her greatly.
Thanks dementia, for the gift of a stronger resilience.
Thanks to Francis and ADA Singapore, I feel I now have a companion called Snowy to keep me company, when my BUB, also referred to as my dear husband (DH), cannot join me on my travels. In fact, when luggage allowances make it possible, Snowy will be with me on my adventures! I wrote a blog a few years ago called The gifts of dementia, where I highlighted new friendships and that truly living every day as if it’s your last, just in case it is your last, is so important. It is the reason not to wait for the emergency to live your life with urgency. Thanks to the late Dr Richard Taylor, who through Google, first helped me see I could live with dementia, and did not just have to go home and die from it. Thanks also to Robyn Moore for leading me to the quote of living with urgency before the emergency, and for teaching me about “First times“.
Thanks dementia, for the gift of truly living with urgency.
Most definitely I still believe it is important to spend the great times now, and I continue to “strive every moment of every day to develop a more welcoming approach to illness, disability, dementia and death, and to see them as the gifts that they have become [i]“,, and every day I remind myself I am a person living with a diagnosis of a younger onset dementia; I refuse to be defined by what I cannot do, but instead by what I can still do. There is much living yet to do, and frankly, if I focused on the negatives of dementia, I’d never get out of bed! Therefore, I have chosen to never give up, to live beyond dementia, and I intend to do so for as long as humanly possible.
Thanks dementia, I am still a person living with dementia, with the emphasis on LIVING.
Kate Swaffer © 2018
[i] Swaffer, K, (2016). What the hell happened to my brain: Living beyond dementia, Jessica Kingsley Publishers: London, p56.