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Uncertainty and Uncertainty

July 30, 2014

by Mark Dunning

Usher syndrome is about uncertainty. It is not knowing. It is fearing the future and desperately clinging to joyful moments in the present.

So is cancer.

My daughter, Bella, has Usher syndrome. My wife, Julia, has cancer. They are mother and daughter and, like all mothers and daughters, they are very similar and very different. They are different people with different diseases living their lives in different ways.

Julia has a rare form of cancer. It is slow moving, and no one really knows the expected progression of the disease. We are told mortality rates, but those are guesses. We are told she will be fine, that she will live a long life. We are also told that there is not enough data to know for sure. For now, all we can do is monitor it and hope for the best.

We lack data on Usher syndrome. There is no clear information on the expected progression of the disease, only anecdotal evidence, really. People with Usher type 1b slowly lose their vision but there we have no defined milestones, no clear understanding of when, or if, Bella’s vision will get worse. All we can do is monitor it and hope for the best. Monitor and worry. 

Like Usher syndrome, there is controversy around the treatment options for Julia’s form of cancer and not enough data to prove efficacy. Vitamin A and DHA and lutein appear to slow the progression of Usher syndrome. Sunglasses might help. We don’t know for sure. For Julia, it is surgery and a form of chemotherapy called Hyperthermic Intraperitoneal Chemotherapy (HIPEC) that itself is controversial. There is not enough evidence to know for sure if it will cure the cancer. If not, the only option right now is to have the same surgery and chemotherapy again. And again. And again. Monitor and hope for the best. Monitor and worry.

This post isn’t about Usher syndrome. But, as always, it is. Bella was always going to be fine in the future. Treatments are coming. We’ll save her vision. Even if we don’t, Bella will be happy. She has a great attitude about life. She has a lot of support. We’ll always be there for her. 

Unless we aren’t. What then?

Bella has always lived for today. She soaks in the happiness of the moment. Julia is different. Happiness is always a future return. She fears it in the present. Good things today mean bad things tomorrow. That’s how she gets through tough times. There will be sunshine tomorrow. Suffering today is just investment in future happiness.

Usher has challenged that approach to life. It is bad today. It will be worse in the future. How do you get through today when there is no forecast of sunshine for tomorrow? And what if there is not tomorrow at all?

While Bella whistles a tune through the present, Julia is adapting. She takes each day in slivers now, balancing wisps of happiness with tweaks of fear. She dips a toe in the bath and pulls it back, catches glimpses of contentment through the looming fog of cancer, of Usher. Somewhere out there is the life she wants for herself, for Bella, but it drifts in a cloud like a dream, far away from where she stands. And that is what is best for Julia. Today is not misery. Today is not glorious. Today is just something to be gotten through while tomorrow lurks.

picture of two adults making a bridge with their hands over two children

That’s still hope, though, isn’t it? To, each day, still believe in tomorrow? There is still a future out there for Julia, for Bella. That future will have good things in it. It’s not a given. It can’t be taken for granted. But tomorrow has never been anything more than hope. The future is never anything but opaque. After all, there are few certainties. In our family, only three come to mind.

Bella has Usher syndrome. Julia has cancer. And, right now, today, they have each other.

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