• Kris

What should I say?

What should I say?

My goal has always been to write a blog a week. So far, it’s not happened. I’m always thinking about what to write, and how to get those thoughts down. However, recently I’d had quite a few weeks of staring at a blank page, and the tick tock pressure telling me, nagging me. With no real ideas, I decided to talk to friends and contacts to discuss it, to see where the conversation went. Number 19 (it's just easier for me to say Number 19 than Covid-19) is all everyone’s talking about. Fear and angst go with it, which of course is normal and to be expected. A few people pleaded or suggested I didn't just write about Number 19 due to (social) media overload. Also normal and to be expected. So I decided to talk it over with the pros, my doctors (one of whom also happens to know what it’s like to stare at a blank page with writer’s block). Those conversations had a profound effect on me, triggering a change – for the better – in how I think about Number 19. And my Alzheimer’s. It took a lot of soul-searching, but what I learned through those discussions is that I am not terrified of Number 19. Real fear of number 19 doesn't exist for me. I’m not fooling myself about it, however; I can check at least a few boxes on the list of conditions one would not want to have had that could make Number 19 even worse – pneumonia decades ago, Alzheimer's, and my blood type. I'm sure there are more, but I’m confident I’ll continue not to be terrified of Number 19. And the reason for that is because of what I went through when I was diagnosed with Early-Onset Alzheimer's. It was horrendous, soul-destroying, crushing, a life taken away. And that wasn't just for me, but my family and friends too. The shock of the diagnosis, however, and all the adjustments I then had to make have made me better able to confront Number 19. Talking has also helped me with my Alzheimer’s. I have a friend who has the same Alzheimer's as I do. We’re similar ages, but she was diagnosed more recently. We’ve spent a lot of time talking about the disease, its impact and the hole it left. That feeling may come back one day, but for now at least, reaching out has helped me accept the diagnosis and learn not to focus on the hole. It will heal if I want to make it so. So for now I’m doing the right thing...self-isolating for as long as needed. But at least I can write this blog and entertain myself and people who are helping me, as well as continue to work on the cookbook, and the Alzheimer's Test Kitchen in Salem Massachusetts (although it’s temporarily closed, like so many places…). I hope what I have learned will help others reading this, that it doesn't have to be just about Alzheimer's – or Number 19. We will get through this. Thank you for reading this, and please send me your thoughts on this blog or any others I’ve written. Thank you. My Alzheimer's doesn't own me, I own it. Avante!


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