Living With Wolfram Syndrome – Lauren Gibilisco

Chores Anyone?

As you know, living with Wolfram syndrome poses many challenges for me, including doing my chores.  With my vision impaired, I’ve had to come up with different ways of doing things and I thought I’d share them with you.

I start with making my bed.  My bedspread has two raised rope designs going vertical.  This lets me know how far to pull it on each side so it is even.

Almost every day I empty the dishwasher.  I know how the dishes feel so I know where to put them.  How large the bowl is lets me also know where it belongs.  Every dish has a certain spot in our cabinets so I know exactly where they go.  I run my hands over the spokes in the dishwasher to make sure I have gotten everything out.  Since I know where the dishes are I know how to set the table.  The only thing I have trouble with is the salt and pepper shakers but we put a braille strip on each item so I know what it is.

They do not let me clear the table.  I have broken too many dishes slamming them on top of each other.  Or I run into them when they are coming through.   I am also able to get things out of the refrigerator because again everything has a certain place to go.  Although sometimes my dad doesn’t put it back where it should go. One day when we were having hotdogs for lunch my dad said “why is there chocolate syrup on the table?”  I thought it was mustard.  Good thing he saw it before I put it on my hotdog.  That would not have been good.  My mom doesn’t like me cooking on the stove while she isn’t there.  She said she doesn’t want to come home from a long day at work and find the fire dept there.

I also dust and vacuum both the upstairs and the downstairs.  I’m not sure I get everthing wiped off or picked up but I just try to keep going in a straight line hoping I am going in the right direction.  I also sweep the kitchen and bathroom floors.  I sweep hopefully into a pile and bend down and pick it up with the dustpan. I listen to see how much is coming out of the dustpan so I know how much is still being picked up.  I can’t see what I am doing so I just do it several times until I think everything is gone.  I also use my bare feet to walk around and feel if I missed anything.

I am in charge of doing the family wash.  I know what my dad’s shirts feel like with all the buttons.  I also know the weight and feel of his white tee-shirts so I am able to separate the whites from the darks.  Of course I am able to tell the difference between a top and pants so I know which to hang and which to fold.  My mom also buys the pod detergents so I don’t have to worry about measuring everything or knowing where to pour.  I am also able to put the washer and dryer on the right settings because we use stick on raised dots.  These go on the start buttons and the temperature settings so I know how to adjust for the different types of clothes.

The buttons are also used on the stove and microwave.  It is digital so I have the dots put on the one, the three and the five buttons so I know the correct temperatures or time settings.  Now getting food out of the oven is a little bit harder.  You don’t want to go feeling around too much in a hot oven looking for the pan.  My mom bought the silicon gloves that go up to my elbows.  You cannot get burned with these on.  So I feel confident reaching in the oven.  They also wipe off cleanly or can be put in the dishwasher if anything spills on them.

I spend a lot of time at home alone.  My parents also work very hard and long hours.  Doing all these chores makes me feel good that I am able to contribute to my family.  It also gives me something to do every day instead of just watching tv or listening to the radio.

So there you have it!  That’s how I do my chores while living with Wolfram syndrome.  Now I have to get back to work!

Lauren