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More on Psychosocial Well-Being

February 28, 2013

by Mark Dunning

Our recent blog post on the euthanasia of the two deaf-blind twins in Belgium generated a strong reaction. On the one hand, we have received numerous e-mails from families who read this blog for the hope it so often offers, for the research breakthroughs and for the stories of accomplishment and success. They don’t want to read about mental health issues. They want to enjoy the present without worrying about what may feel like insurmountable challenges that lie ahead. Those thoughts are debilitating, like obsessing about mortality. They don’t want to read about the anxiety that comes from, say, trying to get to a party when you can no longer drive or the depression that comes from social isolation when you can’t get there. Just let us enjoy the party, they say.


On the other hand are the people who are dealing with depression and thoughts of suicide. I worry what will happen if we stop the discussion, if we raise the issue and then having nothing to offer. We should not ignore them. They are out there. I know because they have written. Some have thanked us for raising the issue. Some have asked us for advice and direction. And some have left comments like this: 

I admit I have had thoughts and somewhat plans to commit suicide if and when my sight is to the point I am unable to enjoy the things I do. Most all my hobbies and my job require vision. Sometimes I just can't handle the idea of my sight being gone. 

The primary means of addressing psychosocial issues in the Usher community has been to focus on research. The thinking is that if we eliminate the vision loss, we eliminate the psychosocial issues that go with it. That is still probably true, but the exciting research going on will come too late for too many. The Usher community has to deal with anxiety. We have to address depression. We have to face the reality that suicide is far more common in our community than in the general population. 

Still, man, is it hard to do. It’s hard because the subjects are painful. It’s hard because the topics are taboo. It’s hard because the best solution, treatments for the vision loss, are still beyond our reach.

But we are NOT going to ignore the psychosocial impact of Usher syndrome on families. We are going to address it frequently and we are going to fight it with hope. We will acknowledge that suicide is far too common in our community and we will find ways to eliminate it. We are going to build a strong Usher syndrome community so people with Usher have support. We are going to build systems and programs so that no individual with Usher feels socially isolated, no matter where they live.

We’ll start right now. Here’s what you need to do: 

Join the Usher syndrome family network then e-mail every new person who joins and make a connection. Social isolation is a killer. Literally. Let’s stamp it out. You don’t have to become best friends with each of the hundreds of families in the network, but if everyone connects with, say, a half dozen families we’ll all have someone who understands our predicament, someone to share our experiences with, to learn from, and to talk to when we’re down. There are moms and dads and aunts and grandparents in the network. There are young adults with Usher and retirees with Usher. There are people from many different countries and just about every state in America. Join and you will find someone to connect with and maybe you’ll be the difference in their life. 

Come to the Usher syndrome family conference. Meet other Usher families. Meet the researchers. Learn about all the great research being done. Get some hope for the future. There is hope there for everyone, not just young kids, not just people with usable vision. Everyone. And if you don’t feel you need the information or that you don’t need to meet anyone new, come anyway. Your smile might be the difference in a life. Then go out to dinner with a table full of Usher folks. Knock over full glasses you can’t see, drive the waitress crazy trying to discern the menu, walk in to the mirror next to the restroom, and laugh it all off because you are among people that understand. It might be the best meal of your life. 

Join the Usher syndrome registry. Help researchers to learn about the disease. Stay in touch with the latest research. We will not find treatments without you. You are the cure. 

Contact a Support Service Provider (SSP). Learn how to master Usher syndrome. Orientation and Mobility training keeps you independent. Embrace it. Braille keeps you reading and provides access to information. Embrace that too. You can remain in control of your life. Receiving services may be a tough transition but they keep you independent and confident. Or, if it’s your family member, don’t let them wallow on the couch in the basement. Help them get out and learn how to be independent once again. Don’t be embarrassed by Usher. Don’t let the loss become debilitating. 

Contact your state commission for the blind. Contact the Helen Keller National Center. They can put you in touch with resources you didn’t even know existed. They are there for you. They understand you. Use them. 

If you are feeling anxious, depressed, or suicidal seek help from a public mental health clinic or a private source. Do it today. Do it right now. Don’t let this fester. You can overcome it. 

Creating an active, supportive Usher syndrome community is the key for all of us. It will help us get more funding for research. It will help us find treatments. And in the meantime, it will help us all to live happier lives. Stay engaged and involved. We need you.

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