Chapter 4: The heart of the matter

Collage from the Eye Patch Quilt.

The question mom poses throughout Chapter 4 to advocate for those with facial difference is: what's it like having a one-eyed mom?  What do people without facial differences not understand about how differences on the outside translate when behind closed doors?  Read on in her words:

Having been an only child myself, I was happy that Andy and Sarah would now have each other as they experienced the uniqueness that was ours.  I often would run around the house in the early mornings or late evenings without the patch on because the elastic caused pressure on my head.  I can generally wear them 3 to 4 times before the sewing the elastic tighter again so that they don't fall down on my nose.  The warmth of my head and hair oils must do the loosening over spans of hours.  Seldom does one fit just right without being too tight or too loose.  There is very little tolerance there for exact fit.

I have learned that it is not unusual for a physically challenged person to take off a prosthesis or health-aid when they are safely at home.  It creates a dichotomy of what is appropriate for the outside world and what is only okay when no neighbors or friends are over.  The kids got to see me running for the upstairs closet that housed the patches when an early doorbell range or a dog had to be walked in a hurry.  They didn't find my appearance scary, but I knew their friends who might be spending the night would, so I had a double set of dress codes for myself.

Being a teacher, counselor, therapist type, I sometimes would ask them if it bothered them when everyone stared at us as I came to one of their school concerts, friends' birthday parties, or athletic events.  Usually they said "No," but did acknowledge that their school mates kept asking them what was wrong with their Mom and why she wore that funny thing.  I think it really helped to be open and give everyone an opportunity to talk about it.

Is this family photo from the 70s or what?

Don't worry- she tasked me with writing my own chapter on this years ago...

The Eye Patch Quilt: Cloisonne Lenses

The Eye Patch Quilt (note: three cloisonne pieces circled in yellow).

Mom turned to making patches around 1962 and shelved her prosthetic eye.  She continued to research alternatives and by the late nineties a few more options were presented to her.  One option she followed up on was to have an artist make a pair of glasses that could fit a stained glass or cloisonne drop in for the right lens.  The artist made a beautiful side panel out of silver that hung off the frame's temple.  The artist also made six cloisonne lenses that could be switched in or out of the frames depending on her style or mood.

When we talked to Marcia Karlin about making the quilts, it was her idea to bring other objects into her work.  Marcia divided the lenses and incorporated them into both quilts, three lenses each.

Close ups of the lenses:

Close up of lens seen in upper middle left of photo at top of the page.

This one is from my brother's quilt.

Lens from upper right corner in photo at top of post.

Chapter 2: The Dreaded Shower Scene

I recently read Stephen King's Carrie and the shower scene reminded me I left out an important part in my Sink or Swim post as to why mom hated P.E.  Yes, it had something of course to do with lacking depth perception.  But the greater part was her fear that her prosthesis would come unglued.  Troubles no teen should have.

Chapter 2: Sink or Swim

Mom's chapter 2 is similar to Loie's chapter in section one.  It is long and has several themes critical to the rest of her book.  I'd like to break her "Childhood and Adolescence: Not for Sissies" chapter into a few entries, then post an unabridged version later this week (okay, by Christmas for sure).

Prosthetic Eyes and Foreheads (wait for it, wait for it!)

A few years ago Eric and I were sorting through stuff in the house when he accidentally shocked himself--not with a live wire, but with a box containing two of my mother's prosthetics.  He gave a nervous laugh and handed the box over to me saying, "Look, you have your mother's eyes."

This photo tells me all I need to know about mom's esteem with the prosthesis.

Mom's long relationship with prosthetics began around age 10 and some highlights from Chapter 2 are below.  I'll scan in the 8 page chapter and post it unabridged this week, but for now this will do.

Fourth grade also marked a transition from the gauze bandage taped on my face to an artificial eye prosthesis.  It required another surgery to line the eye orbit with skin from my stomach....I was so excited about not having to wear the gauze anymore and have questions about who hit me or what happened to me.  Over the years I had asked my mom if she couldn't just paint an eye on the gauze or behind a Halloween mask for me.  I really wanted to blend in.

We started trips to downtown Chicago to get the prostheses started.  The clinician was a wonderful artist and the moon shaped part of the eyeball showing was exactly like my left eye....Sometimes it fell out, sometimes [the glue] burned, sometimes it was okay.  They got me a pair of glasses, not that I needed them, but that they helped to camouflage the seam of the circle of plastic surrounding the eye.

It took me a while to realize that although people who didn't know me didn't ask em as many questions [with the prosthetic], they were now asking my friends and family.  They were too embarrassed to ask me because it looked like I thought everything looked okay, which it didn't.




Mom and I saw TMBG in DC years ago at Wolf Trap.  What a great summer day, prosthetic foreheads and all.  The song spoke doubly to me today, "where was I, I forgot the point that I was making," seems to be the theme of the day!