It’s been just over six weeks since John’s stroke, and this past week felt like a week of trying new things, paying attention to what works, and figuring out our next steps.

We’ve started taking the individual sounds John was originally given — ooh, e, o, ah, L, M and N — and putting them together. We started with M, and John can now repeat ma, me, mo, and other combinations. We’ve started doing the same with L — la, lee, li, etc. These are very small building blocks, but they are building blocks.

At his 10-session speech therapy reassessment, we learned something interesting. When John tries to say a longer sentence, the actual sounds can be completely garbled, but he often produces approximately the right number and rhythm of syllables. It’s almost as though the sentence is in there, but his brain and mouth can’t yet coordinate the sounds needed to get it out.

And John really wants to talk. He wrote in his journal that he wants to try talking, and several times a day he will initiate his speech exercises himself. No one is making him practice. He wants to.

A Change in Direction

We had reached something of a crossroads with speech therapy. John’s therapist at Whittier was wonderful — kind, patient, and willing to cast a wide net and try different approaches. But I was noticing that John was becoming increasingly sad on therapy mornings and often leaving sessions in tears. Much of the therapy had also become focused on AAC (Augmentative and Alternative Communication), essentially using tools and devices to communicate when speech isn’t available.

AAC is absolutely useful, and we will continue using it. But because speaking is so important to John, I wanted to make sure we were also exploring every avenue we could to work directly on his aphasia and apraxia.

On Friday, we had a consultation with Nadine Smith, a speech therapist recommended by a friend here in Marlborough. Nadine has spent about 40 years working with stroke survivors and people with aphasia and apraxia.

She is energetic, direct, and came armed with a million ideas. She spoke directly to John and had him trying all sorts of things. Afterward, John wrote that “she is a little scary and she makes me happy.” 😂

Then Nadine called me over the weekend and told me she had been up until 11 p.m. working on a plan for him.

So, we are making a change. We’re leaving Whittier and starting with Nadine this week, twice a week, right here in Marlborough. Being closer to home will also make life much easier when I eventually return to work. We’re starting with two sessions a week partly so we can stretch the number of weeks insurance will initially cover, while John and I continue working at home using Constant Therapy, Linguistica, Tactus, and other exercises incorporating reading, writing, comprehension and speech.

Nadine was also very clear with us that the extent of John’s stroke damage makes his situation complicated. At six weeks, we are beginning to understand both the areas where he has strengths we can build upon and the areas that may continue to be difficult. Her plan is to find those strengths and use them to help him make as much progress as possible.

Pickle Sauce

Saturday gave us a perfect example of both how aphasia works and how we are learning to work around it.

John’s sister Mary Ellen and brother-in-law George were coming to visit. After his session with Nadine, John came home excited and immediately started writing a grocery list for what he wanted to cook for them.

He wrote:

Pickle sauce.

I stared at it.

“Relish? You want to make relish?”

No.

Then he wrote:

Fireflies.

And suddenly I knew what he meant.

Fireflies is a barbecue restaurant nearby that John and I love, and they make a cucumber salad that we like.

Pickle sauce = cucumber salad.

From now on 🤣

John grilled the chicken and made his “pickle sauce” with cucumbers from our garden, along with a Caprese salad using our cherry tomatoes. Mary Ellen and George brought delicious cookies and cupcakes from a nearby farmers market, and we had a really lovely lunch together.

A Few Hours of Me

After we ate, I left the three of them to visit and took a few hours for myself. I signed up for a pottery wheel-throwing class.

I have learned something important about myself: despite loving art and being pretty comfortable drawing and painting, I am not a potter.

I made two tiny things. One looks vaguely like an inkwell. The other was supposed to be something, but I accidentally poked a hole through the bottom, so it has now been rebranded as a miniature planter. They have to be dried, fired and glazed, so in about a month I will receive physical evidence of my lack of pottery talent.

But it didn’t really matter what I made.

For two or three hours, I got to just be me. I wasn’t coordinating appointments or researching therapies or thinking about the next thing that needed to happen. I was sitting at a pottery wheel making terrible little pots.

And I missed John.

When I got back to my car, I looked at my phone. He had sent me “I love you” in a text message.

And then, apparently concerned that I might somehow miss that one, he had sent “I love you” again through Facebook Messenger.

I had been thinking about taking a night or two away by myself sometime soon, just to reset. I miss NYC and my coworkers. But sitting there looking at those messages, I realized I’m not ready for that yet.

Six weeks into this, we still lean on each other a lot. I need little pieces of time where I can remember who I am outside of all of this — and I think that’s important. But right now, a few hours is enough.