Dr. Kozhi Sidney Makai

Q. A dementia diagnosis is life-changing. How can we think positively while battling the fear of the unknown after a diagnosis?

A. We make a lot of assumptions every day. We assume that tomorrow is guaranteed, that this afternoon is guaranteed and that everything is fine. True, we could use statistics and say, ‘Well, yeah, the vast majority of people will be okay.’ The truth is, nobody ever really thinks of themselves as being the subset that isn't in the vast majority. So, working backwards, for folks who are caregivers of folks with dementia and for those who are fighting through dementia, it’s trying to remove the stigma that sometimes they place on themselves. The stigma that says, ‘I am different.’

Really, we're all different. We’re all dealing with different things, but because of how big and how overwhelming dementia itself can be, it's very easy to focus narrowly, only on, ‘How I am experiencing this?’ But in a broader perspective, it [also] gives [a person] the chance to grow, because then it makes that person change their story around this experience. Personally, that's been my experience working with Dementia Alliance International. The vast majority of people there see themselves as being bigger than the disease they're fighting. They are finding that their aspirations and dreams are not over because of [dementia], and they fight that disease one day at a time. And in fighting that disease one day at a time with hope for the future, it makes it easy for the narrative to shift and change.

Q. How can a person with dementia or their care partner take a neutral approach to seemingly negative circumstances?

A. The word motivation comes from the word emotion. You can't have motivation if you're not emotional. All of us are going to have emotions, but it's about channelling those emotions appropriately and learning when it's appropriate to bring certain emotions to the fore.

Photo Courtesy of Canva.

I grew up on a farm, and we had orange groves. If you wanted to make orange juice for breakfast in the morning you had to squeeze out the orange … I think of certain circumstances and certain stresses that come into life, such as that orange. It's my job to squeeze all the juice that I can from it, because I don't have a choice at this point. Perhaps I wouldn't even plan to have my circumstances come at me this way, but that's not my job. My job isn't to really worry about the logistics of things I can't control; the only thing I can control right now is what's in front of me. So, circumstance X happened, now I have to bring my emotions to the fore in a way that is healthy, and the most healthy experience is to see it for what it is.

Q. What are the three most important tools you think can help a person achieve this positive mindset?

A. Be true to yourself. Part of being genuine is just being honest with ourselves. The last person I ever want to lie to is myself. So, I always want to know the truth, especially when I don't want to hear it. The saying is, ‘The truth will make you free,’ but it's really the knowledge of the truth that makes you free. The truth itself is just out there. Until I know the truth, I can't be set free. So, I want that knowledge of the truth to always set me free.

Be present. We can’t have a hundred relationships that are close, that's not how life works. It's important for you to be a miser in the way you spend your time with the right people. Not everyone can get equal time with you. So the ones that you do get time with, engage with them, be connected with them and be all in with them. Cellphones are off or turned over, with no distractions. Really engage! Life is measured in moments and then when you get a bunch of moments together, that's what we remember in our relationships.

Be unafraid. When I say be unafraid, I mean risk a little. It's risky to believe in tomorrow. Especially when you're dealing with a debilitating disease and you don't know what tomorrow or next week or next year looks like. Every human being should have something to look forward to, no matter how small. I think that's an important part because it really does help with our mental health as we continue looking forward and thinking about the future and being eager about the future, even if we don't know what that future looks like.

Q. Throughout your book, you often mention the importance of building relationships. How can we build strong relationships after a lack of social connection over the past year?

Vulnerability. That is the big word! Capital V, all the way to the Y. Vulnerability is the payment all of us have to make to have relationships. And I mean real genuine relationships, not passing relationships. That means when I'm afraid, I say the words, ‘I am afraid.’ But I'm also happy to say when I have joy, that I have joy. The first step to me is having the space to be vulnerable, or giving yourself permission to be vulnerable.

Probably the hardest part is cutting out anyone or anything that stops you from being truly vulnerable or them from being truly vulnerable. I don't want to be in any relationship that does not bring that level of authenticity to my life. Life is extremely short, and the last thing I need is people who are there with some version of a hidden agenda. Those authentic relationships are the kind that carry you forward on your best days, on your worst days, and everything in between.

BONUS Reading Guide
Want to know how you can transform stress into power and your anxiety into opportunity? Then Disrupted! is for you! 

Part I 

1. Life is an endurance sport — it’s not how fast you run, it’s about finishing. Is life a marathon to you, or a sprint?

2. Kozhi talks about stress being a valuable thing in context. What’s the difference between eustress & distress to you?

3. Psychology’s history has been focused on brokenness. In what ways does looking at thriving change your view of yourself?

4. Kozhi shares that pain can be power. Can you think of a painful situation that brought growth? If so, how did it bring growth?

5. Resiliency is the inoculation we need against future stress. Do you agree or disagree? Why?

6. “We need a model that can help us cognitively illustrate and evaluate our circumstances” (page 40). What do you think of Flach’s model?

Part II 

7. Kozhi tells the fictional story for Scheherazade (page 48). What did you learn about the power of narrative?

8. Kozhi suggests that the narrative we tell ourselves is potent. What’s the common theme in the narrative you tell yourself?

9. On page 60 (the second to last paragraph), Kozhi talks about his wife’s view of him. Can you relate? Why? Why not?

10. Chapter 10 opens with a true story about Herman Melville (author of  Moby-Dick). Do you know anyone that compelling?

Part III 

11. Chapter 11 has a touching story of the bond Kozhi has with his brother, Francis. Did the story strike a chord? How? Why?

12. Kozhi uses the metaphor of a lighthouse in chapter 12. What would it take for you to serve as a lighthouse to others?