Saturday, March 26, 2022

Meet Heugette

Friday was a bit of a blur. I walked Her Highness with our friends, barely speaking to anyone and walking last in the line. My hip was killing me, and I was running on empty. The dawn of the walking dead.

I went into the village after the walk to get a brace with which to fix a step of the kitty ladder that allows Fred and Ethel access and egress to and from the loft where they love to hang out. It’s their private space. But one step broke last week, and I had to repair it yesterday. All is in order now.

Then I had a simple lunch and got into my large comfy chair by the fire, pulled a blanket over me and picked up Louise Penny. And then I drifted off to sleep. In fact, I drifted off a couple of time. Then I had to do some homework for Gus with whom I met for a signing session at 4:00.

When I met with Gus, I cancelled my sessions with him for the next few weeks. I get too tired to study when I do the wood stacking. Plus, he is unavailable for much of April. So, I’m on a bit of a break with him.

At 5:00, Sheba and I went to Eoin’s and Fran├žois’ place for dinner, and Jay came too. It’s always fun visiting them, seeing their pigs, ducks and wonderful doggies. Plus, they had hatched some new baby ducks. They are so stinking cute! I love visiting these boys. They always make absolutely delicious food—some of which I didn’t eat. I had their salad and picked out the onions, and their divine sausages and the chocolate tart for dessert. 

Something did not agree with me. I paid for the thrill of their fabulous food. I’ll be very glad when this FODMAP diet is over and I know what exactly the problem foods are.           

When I was in college, a friend and I did volunteer work with a community centre in Vancouver’s downtown east side. This was in the 1970s. We were there as part of a course, earning credit for our work. The director asked my friend and I to partner and to try to nourish a young boy who wouldn’t speak. The story that follows has absolutely no relation to his story. I just remember the question? Why is he choosing not to speak? 

Heugette was disturbingly reluctant to speak. She could when required to, but with as few words as possible. She came to us as a lovely young woman who cared well for herself and was bright—particularly in mathematics.  She presented as a woman who loved to laugh and play sports and one who was accepted as silent. She was a healthy and sound young woman. 

She chose to stop speaking over two years before we heard about her. By then, she’d been told that she might be on the spectrum and placed in a non-stimulating special education class. She also refused to continue with mathematics, her best subject. Desperate to improve her wellbeing, her parents decided to home school her. Again, however, she refused to have anything to do with math.

Her parents started noting down things she wouldn’t do: She refused to use the telephone, walk near hopscotch games chalked on the sidewalk, she insisted that the numbers be covered of their address on the front door, and she hated using money. The worst aspect of her condition was that no matter how many counselors or therapists she saw, she absolutely refused to talk.

My partner, Jacob, found out about her at a party he attended. Heugette’s parents were at the party. And that’s how we came to invite her to our lab and offices.

I need to make one thing very, very clear. We study synesthesia. We’re neurologists; we are not psychologists. But her aversion to the phone, hopscotch and her address suggested something to us, and we thought that she might have synesthesia and be confused by how she was responding to numbers. We thought, if she did have synesthesia and had it explained to her, it might help her.

We felt her choice not to speak was something she’d have to work out with a psychiatrist or counselor. We had no reason to believe her disinclination to speak had anything to do with synesthesia. But meeting her and seeing her condition was a valuable experience for us. It was remarkable to witness so vividly and personally, the transformative power of knowledge.

Heugette is a very bright woman. We taught her about synesthesia and neurological misfunction; we explained how and why she was seeing such vivid colours when she saw numbers, and we could see the relief on her face that our teaching brought to her. She was a very enthusiastic and capable student. And as we taught her, she started asking questions and then more complex and sophisticated questions. 

Discovering that her condition had a name, that other people had it and that she wasn’t mad changed her almost overnight. She’d kept her condition secret; her shame had built up over the years and had silenced her.

After only a few sessions with her, I asked her out for dinner, and soon that became a regular thing. And then we married and had two kids, neither of whom have synesthesia.

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