Negative Nancy and Suzy Sunshine in Dementialand

I’d love to tell you that I am confident person who has thick skin and is able to blow off all of her blog critics…but that’d be a big fat lie.

I’ve learned that when you put yourself out there on the internet, you should brace yourself for the response. As Forrest Gump said–Life is like a box of chocolates….you never know what you’re gonna get.

I am grateful that on most days I feel that the world is a kind place and people are thankful for my work. Many of you who subscribe to this blog and wake up to read it every Monday are way too kind, way too forgiving, and way too amazing to me.

When I first started writing Welcome to Dementialand, I had few but enthusiastic supporters (my mom, my husband, my friends CJ and Dana). I wasn’t sure if my supporters would continue to be limited to those who were related to me and/or had a history of spending evenings consuming adult beverages with me. I have been humbled that complete strangers (well, former strangers) have somehow found me in this crazy technologically-based world and continue to encourage me to keep writing.

This post is not to complain about the feedback I get because 95% of it is more positive than I deserve.

However, I have received some messages over the past few years criticizing me for portraying dementia in such a negative light. People have said that I overemphasize that dementia is progressive and fatal. (In my defense, I think research and awareness of dementia has been hindered by society’s lack of knowledge that dementia is progressive and fatal.) If I were to sum up these comments over the past couple of years, I’d have to say that there are a lot of people out there who see me as a Negative Nancy.

Interestingly, another common criticism that I receive is that I’m way too Suzy Sunshine. Some people have told me that I downplay the destruction that dementia causes. They tell me that I work too hard to shed a positive light on the lives of those living with dementia…when their world is getting dimmer and dimmer.

Sometimes the comments from both camps are thought-provoking and insightful. Sometimes they are just mean. You might have noticed that you can no longer make anonymous comments at the end of my blog posts. I’ve decided that you’re welcome to say whatever you’d like to me, but you need to own it–just like I own what I say.

So either I’m Negative Nancy or Suzy Sunshine. Strangely, I feel comforted that I receive relatively equal criticisms in each category. I guess they cancel each other out, right? Maybe I’m Natalie Neutral?

I can’t promise that I present a balanced view of dementia in every blog post. Sometimes I’m happy; sometimes I’m sad. I admit that is likely reflected in how I perceive the situations I encounter and the posts I choose to write.

I would hope that if you read this blog weekly you understand that I see the challenges encountered by those living with dementia but also the quality of life enjoyed by many diagnosed with Alzheimer’s, frontotemporal dementia, Lewy-Body, and other types of dementia.

There is no master plan to convince the world to perceive dementia in a more negative or positive light. In fact, there’s no master plan at all. You’re giving me too much credit if you think I’m pushing a calculated agenda.

I’m just a human being who spends a lot of time thinking and teaching about dementia. I am privileged to meet many individuals touched by dementia, and these people are kind enough to share their stories with me. A few years ago, I decided to write about it.

As I look back on my posts over the past three-ish years (which I don’t do often because I notice typos that bug the heck out of me), I think I’ve done a decent job of representing the good, the bad, and the ugly. And I will argue that there are plenty of each in dementia.

When people are diagnosed with a disease that causes dementia, I’m not sure that the diagnosis is always made in a way that acknowledges both the potential of someone living with dementia and the challenges encountered not only by the individual but by their care partners.

A lovely friend with younger-onset dementia sent me an email a couple days ago that ended with “Life is still good!” followed by a smiley face. In the same email, she acknowledged there are some “strange” things going on in her brain and that she recognizes she sometimes has gaps in time.

She says she’s still herself, but needs to reboot frequently, and I know that sending me such a long email probably took a lot of mental energy. And her mental energy is precious; she should get to spend it as she wishes.

She is not overly negatively nor overly positive in her perspective. She seems to be saying “I’m still me, but I know I’m changing.” I am in awe of her in so many ways.

She’s living with dementia.

And maybe life is different than before dementia…but it’s still life.

Too often, people who are diagnosed with a type of dementia are told to get their affairs in order. I’m all about planning, but there’s still life to be lived. And how do we support people in living their best possible lives with dementia?

As with any disease that is fatal, there’s something between diagnosis and death–it’s called life.

Not every day is going to be a good day, but not every day was a good day before diagnosis either.

So that’s my official viewpoint on negativity vs. positivity in dementialand. Yes, dementia is progressive and fatal. You’re gonna have good days and bad days. But life after dementia is life. It’s the same but it’s different.

Call me a Negative Nancy. Call me a Suzy Sunshine.

Just don’t call me late for dinner.

(I’m here all week.)