For our weekly blog series this week we are sharing a story written by one of our Circle of Friend members, and also an advocate for dementia working hard raising awareness and smashing the myths and preconceptions about living with dementia, by living well with dementia and speaking out, Mary Beth Wighton who lives in Canada. Thank you Mary Beth.
Her story is titled ‘Life beyond diagnosis’ which in itself breaks down the myth that we not only don’t have a life after diagnosis, but that can’t live well after a diagnosis, completely alighned with my theory of Prescribed Disengagement. We do not have to go home, give up our pre-diagnosis lives, end up in aged care and quietly die.
People with dementia are joining forces all arond the world, through DAIand other online forums, proving to themsleves, and more importantly to others that they can and do live well. Richard Taylor, Christine Bryden, Chris Roberts, Helga Rohr, JohnSandblom, Ken Clasper, Norrms MacNamara, Agnes Houston Ken Howard, Leo White, and so many others (I cannot name them all here, as that would be another whole blog!) are not only speaking up about living with dementia, but living well with dementia, well beyond their doctors and health care providers expectations and their gloomy prognoses.
‘Life Beyond Diagnosis”
By: Mary Beth Wighton, Person living well with Dementia
“A few weeks ago, I had the honour and pleasure to be the Keynote speaker at A Changing Melody forum in St. Catherines, Ontario. This was a day of learning and sharing for Persons with early-stage dementia and their Partners in Care.
For 50 minutes I discussed and shared information about three main topics:
✔ The Dementia Movement
✔ A call to advocacy, and
✔ Advocacy projects I’m involved in.
I was quite moved by the standing ovation I received from my peers, friends and others.
While answering questions from the audience, I was amazed at the many individuals who was not aware of some of the points I was sharing. Many did not know Canada and Ontario does not have a
dementia plan. This was a strong reminder of the importance of education and not assuming others have all the information everybody needs.
The room was full of raw energy. People wanted to know where some one may sign petitions and how to act as advocates for those with dementia. It was obvious the participants did not want to sit back and let others do the work but instead, they wanted to help. It was a wonderful sight!
I love the story of how A Changing Melody was named . During a 1995 performance by violinist Itzhak Perlman, one of the strings on his violin broke. The audience could hear the loud snap.
Without hesitating he continued to play, changing and recomposing the pieces as he went. When he finished, people rose and cheered to show their appreciation for what he had done. It was then Perlman said to the audience: “You know, sometimes it is the artist’s task to find out how much music he can still make with what he has left.”
If you are someone with a diagnosis of dementia, it is easy to relate to the symbolism of this story. The breaking of the string on the violin is the time of diagnosis. It is at this time, we are forced to make a decision on how we wish to live our lives – or, continue to play the violin.
We may change the melody we play by focusing on the abilities and talents we still possess, Instead of playing Overture to William Tell, perhaps we will switch to Handels Hallelujah Chorus or Beethoven’s 5th Symphony. We have the ability to still play intense, passionate, beautiful music.
When our symbolic violin string breaks, we then transition to “life beyond diagnosis.” You then have to make a decision on how to live. For me, I could accept and embrace the diagnosis or I could choose to reject it and live in anger and with sadness.
It was an easy decision to embrace it. I changed when I was diagnosed. I made a decision to be an advocate for those with dementia.
On the drive home from the forum, Dawn and our friend Shelley chatted about the day. I reflected on how blessed I am. I have people in my life who want to help me live well after my diagnosis. Once again, we embraced carpe diem and had a wonderful adventure.”
Copyright 2013 Mary Beth Wighton
Editor: Kate Swaffer