Six years ago, I received a diagnosis of dementia. It was a life-changing moment, and in many ways, I thought it would define the rest of my life. But the truth is, my life since then has been far more complex, challenging, and meaningful than I ever imagined. Every year I am with my neurologist to take a memory test. Every year, I score at the very top. Despite the diagnosis, the disease has not progressed in the way everyone feared. Apart from a concussion that worsened my short-term memory a little, I have remained largely stable. This has given me something very unusual: time, clarity, and a strong voice. And I have chosen to use that voice. Over the years, I have become a spokesperson for people living with dementia. I have spoken with politicians, appeared on news programs, and shared my story with students, future nurses, teachers, different organisations and many other important people, so they can understand dementia not just as a clinical condition, but as a human experience. It has become my mission, and it gives my life a deep sense of purpose.
Recently, my neurologist suggested a PET scan to confirm the status of my dementia because she questioned whether I had dementia or not. On paper, it seems simple: just do the scan, find out the truth. But for me, it is not so simple. My life, my identity, my connections are built on this life with the diagnosis. If the scan were to cast doubt on it, or even reverse it, what would that mean for me? Would I lose the platform I stand on, the role that has given me meaning for six years? This is not fear of the truth, but fear of losing my purpose. Many of the friends I had before my diagnosis have drifted away, and those I met 6 years ago, are no longer here; some have passed away, others live in nursing homes.
To start all over again would be difficult. Dementia, strangely enough, gave me a community, a mission, and a voice that I might never otherwise have found. So, I live in this paradox: I am grateful for my strength, yet cautious of what the future might reveal. My life today is not only about loss, also about contribution. Not only about memory, also a lot about meaningfulness. Dementia has not taken my life away, it has reshaped it. And in that reshaping, I have discovered the power of being open, honest, and present. Whatever happens next, this journey is mine, and I will keep talking about it, not only for my own sake, but for the millions of others who live with dementia in all its shapes.