Things About My Carol: Part 1: "She Can Talk Your Ear Off"

I mean this in a very good way

Just today, a Facebook Memory (you know those daily prompts from Facebook about things you posted years ago?) popped up on my feed. It was a video I posted 15 years ago shortly after our daughter's wedding. It's just a short 23 second clip of Jessica, Carol, and bridesmaids in the bridal room. I'm a pretty sentimental slob. Never really was that way until after our daughter was born. After the kids were born I found myself wiping my eyes to Budweiser Clydesdale commercials and sappy movies. I did get teary-eyed when I saw that 15-year old clip this morning though. I'll tell you why in a minute.

When Carol and I started dating back in the 1900s, I was amazed at how much she loved to talk to people. While she was always a bit on the shy side, once she was comfortable with you she would talk... and talk and talk. And she didn't care what your station was in life, she loved to talk to anyone and everyone... the wait staff, the lady that cleaned our hotel room, kitchen staff at church, the janitors at school. In fact, she would go out of her way to have a conversation with folks that in some cases get completely overlooked in our society. I always admired that about her. It's just the way she is wired. We were always the last ones to leave church when we had a nighttime service because of the conversations afterwards (I'll take some responsibility for this one too... I can be a bit chatty.) I could see the janitorial staff waiting in the wings for us to get out so they could finish and go home. I remember one night after leaving a restaurant I discovered that, somewhere along the way, Carol had disappeared. I was getting the kids into the minivan muttering "where is your mother?" Well, I look inside the restaurant and there she is having a full blown conversation with who knows who at one of the tables. It's obviously someone she knows and she is talking away. They can't eat their meal and I can't go home. I almost left her there. I could fill volumes about my Carol. Bottom line? She could talk your ear off.

Primary Progressive Aphasia. PPA. Probably not one of the most well known diseases. More people may be familiar with the singular term aphasia. Aphasia can affect people for several reasons. Sometimes it is a temporary condition and sometimes it is permanent and gets progressively worse. Aphasia is basically a disorder in the brain that impairs a person's ability to communicate. People that have suffered a stroke, brain injury, or have neurogenerative disease can experience aphasia.

Many of you already know this. In 2016, when Carol was first diagnosed we were told she had primary progressive aphasia which is one of the forms/ variants of frontotemporal dementia. I could get deeper into the weeds on it but, you can always Google it yourself if you are curious. More detail doesn't really add to what I wanted to say here.

It started with difficulty word-finding. There would be longer than normal pauses or more ums and ahs than normal when she would speak or answer a question. She couldn't come up with the word. As time went on it became more pronounced. Later it seemed she was having difficulty understanding some things spoken to her. Eventually the words were fewer and farther in between. Most recently, nearly all speaking has essentially ceased.

I remember coming home from work many an evening after Jessica and Michael were born and Carol would meet me at the door and want to tell me all about what had happened that day (she was a stay at home mom and I knew how hard that could be.) She hadn't spoken to another adult all day. I had just spent my entire day talking to employees, bosses, and customers non-stop. I can remember putting my hand up while we would be sitting on the couch and asking her, "please... can you not talk for just a few minutes until I can unwind a bit?" She always took it in the spirit in which I asked it. Sometimes she just spoke more than I could absorb. Later we would talk about our day and all the other things couples talk about.

I say all that to tell you this.

Among so many other things, I miss her voice. And when I unmuted that video this morning I heard the voice I haven't really heard in a year or two. And it reminded me of how much I miss it. And it hit me pretty hard. I'm having a hard time typing right now while she is sitting in the recliner right next to me.

(Be sure to unmute)

Yes, we have boxes of videos somewhere from all the video she took throughout our kids' entire childhoods. And I know we have her talking and laughing in several of them. I have only two voicemails on my phone from 2017 that I had the foresight to not delete. I listen to them occasionally. I will never  delete them.

Oh, how I wish she would talk my ear off again.

I'll share some more things about my Carol in future blogs. Most of what I write is really just for me. You are more than welcome to eavesdrop though. Never stop talking to the people you love.

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I don't have the words

"I don't have the words"

If you are any kind of a sports fan, you've witnessed something like this. After the championship football game, the sideline reporter grabs the quarterback or other star player of the winning team and asks them what this win means to them. And the next thing you sometimes hear is, "I don't have the words."

It's true. We have moments in our lives when something we experience leaves us... speechless. We are unable to articulate, in that moment, what we are feeling. We say things like, "words fail me." We imply that our vocabulary is inadequate to give a proper description or account of something that is incredibly special or moving. It's not that we have an inadequate vocabulary; it is usually just a case of emotion temporarily overwhelming our communication skill... we can't find the words.

When we were very young, our vocabularies were quite limited. I fondly remember learning new vocabulary words in elementary school. As we grew older, through learning and experience, our vocabularies expanded giving us the database for our written and verbal skills. And it is common knowledge that reading is one of the most powerful ways for children (and adults) to be exposed to and retain vocabulary words. It is believed that an average 20-year old's vocabulary is 42,000 lexemes. (Sit, sits, sat, sitting are 4 words but they are forms of the same lexeme.)

So, having or not having words can be an issue of education/ breadth of vocabulary, a matter of articulation skill or lack thereof, a function of our current emotional state and/or preparedness, or any number of other factors.

All of these words and our ability to hear them, our knowledge of how to read them, and arrange them in such a way that allows us to understand and to express ourselves, reside in multiple regions in our brain. Psychologists and neuroscientists refer to the "language center" to encompass the various parts of the brain that collectively allow us to process language. And it's not just the words we hear, see, and speak. Our very thoughts and ideas are comprised of words/ language. Language is also an essential part of our working memory and cognitive capability.

Almost 8 years ago my wife began to have some struggles with normal communication. She was specifically having trouble with word-finding. When she would get hung up she'd say, "I can't get my words out" and that eventually progressed to "I don't have the words." After a multitude of tests and one very long neuropsychological examination, she was diagnosed with aphasia. And her aphasia was connected to cognitive, memory, and even some early motor issues (apraxia.)  In a nutshell... dementia.

Dementia isn't really a disease in and of itself and not all dementias are the same.

Dementia is a brain condition caused by an underlying disease such as Alzheimer's or other diseases like Parkinson's, or vascular disease, or primary progressive aphasia, to name a few. We often think of dementia as primarily memory loss but it involves so many other things.

In Carol's case, the primary areas of her brain that are damaged and are shrinking are the frontal and temporal areas. Eventually the damage will move deeper into areas of the brain that control some pretty important functional parts of the body.

Over the last 8 years, we have moved from "I don't have the words" (which are themselves spoken words in a sentence) to very few words spoken at all. I frequently wonder what her thoughts are. Or if she can still pray silently. I wonder if there is any communication in her dreams. I like to think that there's more going on in her head and it just isn't being made known to all of us.

And, despite this terrible road she has been on, she's the same sweet Carol I've known for nearly 42 years

And how much does she mean to me? 

I don't have the words.

Disclaimer: I don't profess to be a doctor, scientist, or expert and therefore what I have written may not perfectly describe the subject matter. I've written what my understanding is from my own observations and research these last few years. Some of it may be a bit inaccurate but, I'm not trying to write a medical abstract. I'm just sharing my opinions and thoughts. Look, I'm just a husband. (But I did stay at a Holiday Inn Express once.)

Some of you may feel that I am oversharing about my wife's illness. I will respond this way. I am finding that expressing my thoughts about this journey is therapeutic for me. I'm not much for journaling so this has become my outlet to write some thoughts down. And maybe this is informative for at least some of you. So, if that's OK, I'll continue sharing my thoughts until I no longer want to or am no longer able. I'm encouraged that we finally speak very openly about conditions affecting women's ta-tas and men's prostates but, we seem to shrink to only whispers in secret when it comes to maladies of and injuries to the brain. We shouldn't feel constrained about talking about this subject. So many people and families are affected by it.

Thanks for reading.

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I Made Her Laugh

If I am brutally honest, this is most likely how I was able to get Carol to take an interest in me. Even at 27, with a headful of hair, dreamy brown eyes, a boyish grin, and a full manly beard... I wasn't exactly the guy that all the gals were paying a lot of attention to at the Red Lion Pub that August night in 1982. But she did.

I'm pretty certain it was because I made her laugh.

Making people laugh has been my go-to for as long as I can remember. Some self-reflection a long time ago made me realize that my use of humor was a coping mechanism to compensate for some self-esteem issues that I had when I was a young boy. I was always the smallest boy in my class (and almost always the youngest.) When I was picked on about my size, I would just deflect it by making a joke. Not really the stereotypical class clown, just someone that used humor as a way of making people like me. And, for the most part, it worked. I also got (and I still get) a lot of satisfaction from making people laugh.

But, back to Carol. You know, not everyone appreciates a good laugh. Some folks are pretty serious minded all the time. I have to say though that little Carol Williams was a woman that LOVED to laugh. She comes from a family that loves to laugh. (That made me like them immediately.)

While I was still making her laugh, I convinced her that we should get married and, since we already had made up our minds about that, what was the point of a drawn out engagement? Let's just get it done. And so we did. And here we are.

So, why am I sharing all this with you? OK, you make her laugh... what's the big deal?

The big deal is that Carol was diagnosed with dementia in July 2016. I know the day, where I was sitting when I took the phone call, and I can probably tell you exactly what I was wearing. That was not a laughing kind of day. In fact, after the phone conversation with the doctor, I told my boss I needed to step out, I got in my car, and I rode around for about 40 minutes all the while crying like I hadn't done in a very long time. Not much laughing that day.

If you are curious, you can Google primary progressive aphasia and frontotemporal dementia. You may be familiar with Bruce Willis' medical condition. Same diagnosis.

Not exactly hilarious stuff.

But here's the deal. You just have to keep moving forward and try to make the best of the situation. Play the cards you've been dealt. If life gives you lemons, you make lemonade. Look for the silver lining in the dark clouds. You know... do all that stuff. I like a good idiom as much as the next guy. But, I'm not sure those were the exact words that I wanted to share with her when I got home. I didn't really know what to say or do. So I asked (and continue to ask) God to give me the strength, patience, and wisdom I need and to let me take the very best care of her that I am capable of.

Dementia is an insidious thief. It steals so much from those that suffer from it as well as robbing the family and friends around it.

But I am so thankful that it hasn't yet stolen her laughter and sense of humor. It also hasn't stolen the sweet, kind nature that any Carol lover knows is a hallmark of the kind of person she is.

So, going on 8 years into this journey, you know what we continue to do? We're still laughing. I can hear her cackling away (at all the appropriate times) while she is watching one of her favorite romantic comedies. She loves to laugh at all the dumb commercials from Geico, Liberty Mutual, Wendy's (Bag boy, bag boy whatcha gonna do...) She loves Sebastian Maniscalco, Leanne Morgan, and Nate Bargatze. It's a mystery to me how she can no longer really speak or understand words so much, yet laughs at the punch lines at the exact right times. Music and comedy truly are the best medicines for dementia.

My goal every day is to put a smile on her face and to make her laugh. Hey, it worked 41 years ago. She's been laughing at my shtick and my stupid jokes since.

I'm not about to stop making her laugh now.

Footnote: I've not really shared much on social media about Carol's diagnosis but, I figured after 7+ years, most people that we know fairly well already know because it's not like we've tried to keep it a secret. On the other hand, it hasn't been something I've shouted from the mountaintops. So, if you didn't know before... well, now you know. Prayers are always welcomed.