Dear Anne,

In a few years’ time, you will begin to forget, your thoughts will dissolve before your very eyes. The Anne that you know will be transformed into someone perhaps you can only recognize bits of. You have centered your identity on your academic prowess, on the fact that you received a Master’s degree and are now so close to receiving your PhD -- which will make this all so distressing and heartbreaking. You have such deep love and reverence for your research, but how will you maintain those feelings when you yourself will fall subject to the very thing you study?

I’ll be frank: you will not finish your PhD. I know. How can the world be so cruel? You will grind though eight challenging, satisfying, taxing, inspirational years of your program before the almost-doctor Anne, nearly-PhD, will be shrouded by a dense and unforgiving fog. You will be within arm’s reach of your diploma, and then you will stumble into the depths of confusion. You will have to leave notes for yourself on how to send an email to your advisor whom you used to message several times a day; on how to get to Trader Joe’s, where you used to frequent multiple times a week just to brush your fingers along the novel treats. You will find yourself ducking into the bathroom during a gossip-fest with your beloved friends because you simply cannot follow the conversation any longer.

With your husband at your side, you will work with many physicians to understand what’s happening to you. No, you’re officially not going crazy, but you do have dementia (but you think inside that means you are indeed going crazy). You will find that people will start treating you differently, looking at you as if you’re playing a strange joke on them when you ask for them to repeat something you know they said just 10 seconds ago but cannot remember for the life of you what it was. They will start to not even hide the fact that they think you are not worth their time. You think that it may be good to get in front of the issue and start explaining that you have dementia and that you need to be treated with extra care, but since they see a healthy-looking young woman in front of them, they will say in their disbelief “don’t make fun of people with dementia.” Make fun of? People with dementia? I am one! Can’t you see? No, as it turns out, it is invisible, and you will suddenly understand the plight of others with hard to see and hard to understand atypical mental statuses.

You will, with great clarity (which will become rare in the land of the fog), hand over your car keys to your husband, permanently. You realize in this moment that your dementia not only impacts you, but every single person around you. You understand that you are terrified of burdening others, of being a danger to others, so you give up your independence. You stop letting yourself take a walk around the neighborhood, your previous daily ritual come rain or shine, snowstorm or heat wave. You lose touch with your old friends, both because they don’t know how to interact with you, they don’t even know who you are anymore, but also because you are embarrassed and self-conscious.

But Anne, my dear, you are still Anne. You are the joyous, bubbly, kind, considerate, intelligent, thoughtful, funny, passionate, amiable woman that you have always been. Remember how you would save worms hopelessly squirming on the pavement after a warm summer rain? You will always do that, you will always show such compassion to all living things. Remember how you would always compliment anyone you saw who wore yellow, just because yellow reminds you of your grandmother’s favorite sunflower earrings that you would stare at for hours as a kid and hoped by some miracle that she would someday give them to you? You will always do that, and you will hang on to all those memories of your childhood. In fact, you will retain all your memories from before you started noticing the dementia creeping into your life with its dark tendrils. You will retain all the qualities that make you a person that makes this world a better place.

You, in fact, are not what makes life challenging – it’s all the impatient and small-minded people around you. You cannot control their behaviors, you cannot make them more patient, you cannot make them listen to you, but you can control how you react. Continue being the brilliant, calm, generous person you have always been. Don’t close your world just because the world doesn’t understand you. Keep loving your husband, your dog, your neighbors, your friends. Keep putting a smile on other people’s faces. You, Anne, might appear different on the surface, but at your core, you only shine brighter.

With deepest love and admiration,
Anne