how I would, for a time, define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that.
“I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia. Through an early-stage support group, through the Dementia Advocacy and Support Network International, by talking to you today, I am helping others with dementia live better with dementia. I am not someone dying. I am someone living with Alzheimer’s. I want to do that as well as I possibly can.
“I’d like to encourage earlier diagnosis, for physicians not to assume that people in their forties and fifties experiencing memory and cognition problems are depressed or stressed or menopausal. The earlier we are properly diagnosed, the earlier we can go on medication, with the hope of delaying progression and maintaining a footing on a plateau long enough to reap the benefits of a better treatment or cure soon. I still have hope for a cure, for me, for my friends with dementia, for my daughter who carries the same mutated gene. I may never be able to retrieve what I’ve already lost, but I can sustain what I have. I still have a lot.
“Please don’t look at our scarlet A’s and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.
“I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language, and cognition. Encourage involvement in support groups. We can help each other, both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there.
“My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.
“I’m no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer’s disease.
“Thank you.”
She looked up from her speech for the first time since she began talking. She hadn’t dared to break eye contact with the words on the pages until she finished, for fear of losing her place. To her genuine surprise, the entire ballroom was standing, clapping. It was more than she had hoped for. She’d hoped for two simple things—not to lose the ability to read during the talk and to get through it without making a fool of herself.
She looked at the familiar faces in the front row and knew without a doubt that she had far exceeded those modest expectations. Cathy, Dan, and Dr. Davis beamed. Mary was dabbing her eyes with a handful of pink tissues. Anna clapped and smiled without once stopping to wipe the tears that streamed down her face. Tom clapped and cheered and looked like he could barely keep himself from running up to hug and congratulate her. She couldn’t wait to hug him, too.
John stood tall and unabashed in his lucky gray T-shirt, with an unmistakable love in his eyes and joy in his smile as he applauded her.
APRIL 2005
The energy required to write her speech, to deliver it well, and to shake hands and converse articulately with what seemed like hundreds of enthusiastic attendees at the Dementia Care