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Tuesday, June 19, 2012

Anxiety and Usher Syndrome

by Mark Dunning

This is your day.

You wake with fright. Did you oversleep? It’s been gnawing at you all night. You knew you had to get up early because the car service is coming to pick you up at 8:00 AM and you don’t want to miss it. You slept poorly because you knew you had to get up. Every hour through the night you’d pop up and ask your wife if it was time to get up. She finally hit you with a pillow and went to sleep on the couch because you were driving her crazy. But can she hear the alarm from the couch? Or was she now so tired from you poking and prodding her that she slept through it? Or did she simply smash the clock out of frustration just before she slammed you with the pillow?

You shuffle down the hall to the kitchen and start to make breakfast. You find a bowl and pull out the cereal box. Then you go to fridge and freeze. Your fingers start to shake and sudden heat races through you. Beads of sweat form on your forehead. Your heart starts to thump.

You’re out of milk. How could you have forgotten that?

A hand touches your elbow. You hear your wife’s voice, her breath warm on your ear.

“What are you doing up? It’s 5:00 in the morning. Go back to bed.”

“We’re out of milk,” you say, your heart still thundering. Your voice feels shaky.

“I know,” she replies gently, “Don’t you remember? You said you’d pick it up after your doctor’s appointment. We talked about it last night.”

The room is swaying now as you nod. Of course you remember. You’re out of milk. You need to pick it up after the doctor. It invaded your dreams all night. Every time you woke up, it was the first thing you thought about. You’re out of milk and you need to pick it up.

“Are you sure you can’t get it?” you ask, feeling smaller with each word.

You can feel her sigh, but you can’t tell if she’s aggravated or concerned.

“I told you I have to work all day and then I have that thing this evening,” she says, “I’m not going to be home until late.”

You nod understanding. You both know you have a doctor’s appointment today and then nothing else scheduled. You should go get the milk. It only makes sense. Besides, you worry about your wife. You are both getting older. She’s going to be out late as it is. You love her. You don’t want anything to happen to her. My God, what would you do without her?

She puts her arm around you and kisses your cheek.

“I could pick it up on the way home? I could find a 7-11 or something like that?”

The thought is a relief for a moment, but then it comes crashing down. She does everything for you. She works. She cooks. She cleans. She drives you both everywhere you go. You need to do this for her.

“No, no, no,” you say, “I’ll get it.”

She goes back to sleep on the couch. You go into the bedroom and sit on the end of the bed. You spend the next two hours planning to get the milk. You need to be ready early. You need to get out on the sidewalk by 7:30 because you remember that time that the car service arrived 20 minutes early and left before you came out. What if they have the time wrong? You told them 8:00. You know you did. Did they write it down correctly? And what’s the date? Did you tell them the right date? Maybe you should call and check, just to be sure.

What’s the weather? Is it going to rain? You’ll need to find the umbrella. You can’t go to the store soaking wet. No one will want to talk to you. Oh God, what if now one will talk to you? What if you can’t find anyone who knows where the milk is?

Calm down, you tell yourself. It’s a grocery store. Someone will be there. Ask them to find a store employee. Show them your cane. Someone will help you find the milk.

You lay back on the bed. You feel exhausted already. You could happily stay in bed all day and not go out at all. You’re not hungry any longer. You have no energy. Your body feels heavy. You need something to pick you up. You need coffee.

If only you had some milk.


The above scenario is an amalgam of discussions I have had with adults with Usher.  They have asked me to write about it, to let people know it exists, to let others know they are not alone.  They don't like to talk about it (though at least one has written about it in this blog).  I have not asked, but I believe it is because they are embarrassed by it.  No one likes to admit that they are nervous about anything.  But make no mistake.  Anxiety is a big part of having Usher syndrome.

Anxiety and depression are close relations. The vision loss and the hearing loss can make it difficult to get around, to accomplish everyday tasks. People with Usher start to fear simple things like taking the bus or going to a restaurant. I already see this with my daughter. She fights like a cat in a bathtub when we tell her we’re going out to eat. She says it’s just because she doesn’t want to go. She’s 13 years old, so I’m sure that’s part of it. But the larger part is that restaurants are dark and loud. She gets anxious. What if she can’t see the menu, can’t read the waiter’s lips, can’t hear the conversation over the din?

We still make her go. We do so because we don’t want her to be cut off socially. We don’t want her anxiety to lead to depression. But I don’t know anything about this stuff. I’m just her dad. We always try to include her, to find restaurants that are quieter, brighter, to help her with the menu and the waiter, to repeat conversations when she misses parts. But I know her experience at the restaurant isn’t the same as ours and I know it’s only going to get harder.

This is problem that people with Usher face. Everyday tasks and events slowly become more difficult. They take more planning, more effort. More things can go wrong and the first time they go wrong they come with a feeling of panic and terror. So, like any logical being, you try to avoid those things that can go wrong. But what do you do when some of the basic functions of life are the things you want to avoid? What do you do when you are worried about going to buy a carton of milk?

It’s this logical avoidance due to anxiety that leads to depression. One day you look up and you’re not going out at all. You don’t go to restaurants or movies or night clubs or sporting events. Your friends don’t ask because they know you’ll just say no. Life becomes less rich, less absorbing, more of something you suffer than enjoy.

Friends and family can help by assisting with difficult tasks and encouraging participation. You need to be careful, though. It is one thing to encourage someone to overcome their anxiety that the pool is too cold to wade in and another to push them out of an airplane to get them to overcome their fear of falling. One will probably help, the other probably will make the anxiety worse.

That’s why it’s best to seek the advice of a professional. If you or a loved one are finding that your anxieties are overtaking your ability to cope with them, seek help. They can teach you techniques for overcoming your anxieties and getting back to living your life the way you want to.

These resources can help.

Good luck.


Dianrez said...

It's time to meet other adult and teen Deaf-Blind people, such as at the Helen Keller Center and the Seattle center. Meeting kindred souls with the same experiences is a tremendous booster. Not all are completely blind, but have all variations of both hearing and sight.

Anonymous said...

I agree with you, Dianrez. Your blog is an extreme case. I'm married to a Deaf-Blind man and while he does have his good / bad days, his anxiety level is not that excessive. Perhaps it is because we have a great support system in Seattle. We all know Deaf people crave their community for various reasons... Deaf-Blind folks are the same! So, check out opportunities to meet other Deaf-Blind folks. One such example is the Seabeck camp, near Seattle:

Good luck!

Jill said...

This actually brought tears to my eyes. Thanks for posting this! It
s so true!!

Anonymous said...

mm this is a good written story..
but I'm suprised about the wakeup-scenario - in Holland we have alarmclocks with a 'shake'alarm. Deaf people can feel that it 's time to get up. Thats saves a lot of realistic anxiety about how to wake up in time..

Another remark: Ushers syndrome had 1 "advantage": its prognogsis is mostly quite slowly so when you start early with finding compensation skills (there are lots of them!!, eventually togehter with your familie or roommates (if you have any) that saves a lot of anxiety as well and can even give pleasure in tackling seemingly big problems!! in my opinion a lot of dailyproblems can be solved with a little help when the help is adequate and effective!

John Emmons LMT said...

I don't see Deaf/Blindness as a negative. I've found many positive advantages to it. Losing one of our senses increases the others. I have been very happy to have a stronger smell/taste/touch as it has helped me become more aware and acute to whats around me.

Check out my blog that I started. :)

Anonymous said...

I think many people with Ushers might not even know they have anxiety. They just think their thought process is part of dealing with Ushers. I think partly what causes anxiety is trying to appear normal, trying to appear and act sighted and hearing, trying not to "screw up". There is enormous pressure from the sighted and hearing world to expect us to act "normal". We often don't fit in any world because we are between worlds (between deaf and hearing, between sighted and blind).

And not knowing. Not knowing who will be at the party, whether they will change the venue at the last moment, whether there are stairs, etc. Not knowing whether to "push" yourself to go to this place, or to give yourself a rest and stay home.

Important topic because it is often overlooked by the retina specialist, the audiologist, the optometrist, etc. No one in the medical team really acknowledges the hard mental work people with Ushers have to go thru.

Anonymous said...

We should not dismiss the anxieties and concerns that some people face, simply because others do not, particularly if they have always been deaf/blind, which is going to feel very different from being used to seeing and then watch that vision deteriorate. My 11 year old with Usher 1B hasn't even suffered any loss in field of vision yet, but he hates restaurants that are dark due to the loss of rods. We have begun to remember which ones in our town have the "less romantic" lighting for when our whole family is going out to eat. We have had to open blinds or request other tables. I have absolutely no doubt, given his personality, that he will have frustrations and even some anxiety down the road. As parents, we can only do so much. Primarily, right now, since there is little vision loss, we hope and pray for a cure. (Oh, and we made sure that he has cochlear implants, which mean that currently, he has no educational issues and is well above average in language and reading skills).