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The Fourth Symptom

May 18, 2012

By Mark Dunning

When someone is diagnosed with Usher syndrome, there are a lot of services offered to address the physical symptoms associated with the disorder. There are hearing aids and cochlear implants, speech therapy and ASL, FMs and loops and closed captioning for hearing loss. There is mobility training and tactile sign and braille and canes and guide dogs for vision loss. There’s physical therapy, and occupational therapy, and even hippotherapy for balance issues.

But the most debilitating aspect of the disorder, the psychological impact of living with Usher, is usually left for the family to address on their own.

There are two main psychological issues that people with Usher face. One is anxiety. The other is depression. I’ll talk about anxiety in a later post. Today, we’ll talk about depression. As always, let me state that I’m no expert on depression. But one thing I do know is that there is a stigma attached to it. Mental illness of any type is something that’s kept quiet everywhere and in some countries is so taboo that it’s not even spoken of within families. Depression is seen as weakness. You’re supposed to be able to handle it by yourself. Pull yourself up by your bootstraps. Get over it and get on with it.

Many with Usher do just that after they are first diagnosed. They deal with the emotions on their own. They get back on their feet and get on with their lives. The problem is that Usher is a degenerative disease. You don’t just get it and get over it. You are constantly dealing with loss. You can drive then you can’t. You don’t need a cane then you do. You can do your job then you can’t. You can read a book without magnification then you can’t. It’s just one thing after another. Sure you get over one thing and move on, but then there’s another issue lurking on the horizon. It is exhausting.

That constant loss is what makes it so hard to talk about. People with Usher are just like everyone else. They are just as positive and enjoy life just as much. No one wants to be the person that discusses their new ailment at every party. When people ask how you’re doing, they expect you to answer ‘good’. If you elaborate, they avoid talking to you the next time. People with Usher know that. They don’t want to burden their friends with their problems. So they keep them inside until the weight becomes too much.

The best way to deal with this is to see a therapist. Strong family supports help, too, but it has actually been found that spending too much time talking about it with friends can actually increase depression. But here, again, is that stigma. I have friends with Usher that see therapists. They whisper it, though, or allude to it. They say they see a doctor every week at the same time. Then they raise their eyebrows. Understand? They are confiding in me, sharing a secret we can’t acknowledge in public.

Well, why not?

Look, imagine someone worked as a chimney builder. Every day, day after day, for years on end this person carried a heavy burden of bricks up a ladder to build chimney upon chimney. Then one day the builder’s knee gives out. It’s not permanently broken. It can be fixed. Would anyone think it’s taboo to see a doctor for that knee? Would anyone tell him to get over it and get on with it, to deal with it himself, in quiet, and please don’t tell me about it? No, we’d marvel at the man’s stamina and talk about how it’s understandable and how he’ll be back as good as new soon enough because he’s so strong.

The people I know with Usher syndrome are some of the emotionally and psychologically strongest people I’ve ever met. So why don’t we treat depression the same way we’d treat the knee of the chimney builder? The chimney builder hurting his knee would be expected given the load he carried. The same is true for people with Usher. They shouldn’t have to be embarrassed about it.

I have my own experiences with depression. When Bella was first diagnosed with Usher syndrome, for a long time I could not see anything but the worst. Bella is vibrant and alive. She bubbles with enthusiasm for life. She’s always been that way. But the future Bella I saw was living with an elderly me, sitting in a rocking chair, alone and lonely, cut off from the world. She was rotting, waiting for time to turn her to dust.

I could see it all playing out. She would have to give up horse riding if she couldn’t see so she’d spend time at home. She wouldn’t be able to get around so she wouldn’t have any friends. She wouldn’t be able to read so she wouldn’t be able to graduate from school. She wouldn’t be able to get a job so she would have to live with us. And she wouldn’t be able to meet a man who would fall in love with her so she’d be lonely.

I spent weeks and weeks soaking in that vision of my daughter. It infected everything I did. My work suffered. I gained weight. The walk from the couch to the bed was too difficult, so I stayed up late. Once in bed, I didn’t want to get up. The world was dull and opaque. The sun wasn’t as warm. Food had no taste. I was watching my daughter die one breath at a time. What was the point?

I never considered seeing a therapist. Crazy people see therapists. I wasn’t crazy. I was just depressed. Looking back, I wish I had seen someone. It was months of agony. I’m not really sure how I pulled myself out of that hole. It was like crawling out of a pit of loose sand. Ever so slowly I gained purchase. Once I was out and looked back, it seemed like I should have been able to deal with it sooner. I felt like I had spent months dealing with something that could have gone by faster had I just sought the right help.

I was lucky, really, because the consequences of not seeking help can be dire. I have a friend. His sister had Usher syndrome and she lived my nightmare. She lived on the other side of the world, back in his home country, back where mental illness is taboo. She was older so her vision loss was advanced. She never married, never left home. She was lonely and aging. One day she gave up. She didn’t get out of bed. She stopped eating. My friend flew to see her and begged her to come back to them, but she couldn’t see them any longer, couldn’t hear his words. She just gave up on life and died.

And so I write this post today in her memory. I hope that her story inspires those readers dealing with depression to seek counseling. I am heartened every day by scientific discoveries. Treatments are coming and the future will be brighter. In the meantime, don’t give up on living with Usher. You can still accomplish pretty much anything. You could be a speed skater, a sky diver, a mountain climber, or a classical pianist. I understand that you might not be able to see that right now but believe me, it’s true. Once you climb out of that hole, you’ll see a long and happy life ahead of you.

Go get help. There is no shame in it.

You can start here and here. Good luck.

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