[dbaust] Re: anxiety ushers
- From: "Stephen Hallinan" <sph@xxxxxxxxxxxxxxxxx>
- To: <dbaust@xxxxxxxxxxxxx>
- Date: Wed, 4 Jul 2012 22:09:45 +1000
Hi Trudy,
Thanks for sharing a very touching and thought provoking story about ushers
and anxiety. I've seen something similar unfold, so I found the story quite
touching.
Stephen
From: dbaust-bounce@xxxxxxxxxxxxx [mailto:dbaust-bounce@xxxxxxxxxxxxx] On
Behalf Of Trudy Ryall
Sent: Wednesday, 4 July 2012 8:56 PM
To: dbaust@xxxxxxxxxxxxx
Subject: [dbaust] anxiety ushers
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
<http://ushersyndromeblog.blogspot.com/2011/12/anxiety-of-deliverance.html>
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
<http://ushersyndromeblog.blogspot.com/2012/05/fourth-symptom.html>
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.
<http://www.mayoclinic.com/health/anxiety/DS01187>
http://www.mayoclinic.com/health/anxiety/DS01187
h <http://www.apa.org/topics/anxiety/index.aspx>
ttp://www.apa.org/topics/anxiety/index.aspx
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