The Moments In Between
Finding joy amidst harsh realities of my wife’s diagnosis
Mia, my wife, was diagnosed with Huntington’s disease on the 4th of January 2021. She was 31 at the time. Huntington’s disease is a neurodegenerative disorder for which there is currently no known cure. It leads to cognitive, motor, and psychological symptoms. Since then our life has been simple, boring, difficult, heartbreaking, meaningful, and joyous.
Every morning, I wake up before Mia. I put on some coffee and start preparing her breakfast. She loves yogurt and berries. I have recently added peanut butter because she needs the calories. Yogurt and peanut butter do not mix easily, but if you stir long enough, they start to blend together. All it takes is a bit of time.
Once I have added the berries, I leave it on the table in front of the seat where she always eats her breakfast. At some point, Mia stumbles into our kitchen. She looks at the coffee and berries on the table and sits down. I sit down at the table across from her, doing my best not to disturb her. At some point, halfway through her berries, she will look up at me. The light has returned to her eyes. I ask her how she slept. She says, “Fine, thank you.” She never complains.
Walking is becoming an issue. It takes a lot of time and energy to get somewhere. We ordered a wheelchair and use it when we need to walk long distances. When we are late, I start running with Mia in the wheelchair. I push her out in front of me and sprint to catch up with her again. The wheelchair has a tendency to veer to the left, but I catch it before she bumps into something. When we do this, she laughs hysterically and has a big smile on her face. I think she likes going fast. We get strange looks from people sometimes. I don’t care.
One of our favourite things to do is visit a small ice cream shop in our town. The ice cream is surprisingly cheap for the quality; this is probably why there is always a queue. We go even when it’s cold. We eat the ice cream next to a canal.
The canal is usually full of boats, filled with groups of friends or families passing us by. We always try to guess where they are going. After they are gone, we sit silently eating our ice cream. I always get the same flavour, while Mia always chooses something different.
We don’t talk as much as we used to. Mia is starting to have trouble forming sentences and sometimes struggles to get her words out. There is a lot of silence. The silence is not as loud as it is with other people; it does not feel awkward or tense. It feels warm and necessary. We have said what we needed to say. We do not need to speak anymore.
On Tuesdays, there is a food market in the center of our town. Mia and I go there to visit all the stalls and watch the people doing their shopping. Mia waves to every person that passes her. We usually stop at one of the stalls to buy fried chicken. The owner always recognises Mia and greets her with a big smile. He says it has been ages since we last saw each other. He is kind to her. He speaks slowly, and waits patiently while she tries to get her order out. This makes me happy.
Every two weeks, we have a “date night.” We go someplace we can’t afford and act like we fit in. We take our time to dress up for the evening; only the best will do. I push Mia in her wheelchair and use up all my “excuse me’s” to get to our table. We try not to let the moment overwhelm us. We avoid talking about the future. I make a few jokes that she laughs at. Her smile is incredible when she gets caught off guard; it will melt you.
Sometimes, when it gets to be too much, I go for a ride on my bicycle. I go to places that are far away, which take a long time to get to. When I reach my destination, I video call Mia. I show her how beautiful it is and tell her that I wish she was here with me. She responds, by telling me how beautiful it is and that she wishes she could be there, too. As I hang up the phone, I always wonder if the trip was worth it.
On Sundays, we go to church. Mia is a Christian; she loves God with every atom of her being. She never misses a Sunday service. The sermon is usually about how God will bless all those who follow Him. It certainly does not feel like Mia has been blessed. Maybe in the next life, when God wipes away every tear — maybe then.
