In my meeting with DJ Mermaid this week we talked (among other things) about expressing our honest feelings in our personal stories, and the importance of using strong verbs to express ourselves. DJ Mermaid is a very fast learner, and you’ll see an example of this in today’s post #3. IN her original draft she said she was “in casts,” and I asked for a stronger verb.

by DJ Mermaid

If you stepped into my shoes — or fin — right now you would realize that I am going through a difficult and awkward time in my life. I am imprisoned in casts on both legs from my ankles to my hips (I am wearing casts to put my heel down and make myself straight) and am stuck at home with my mom! (Uggh!)

Yesterday my friends came over and we decorated s’more cupcakes. Loads of fun.

Just in case this sounds exciting to you, I am going to show you a day in my fin through words and numbers.

• Wake up happily!
• Eat a delicious and healthy breakfast like an over hard egg with a fresh fruit smoothie.
• Do homework while mom takes little bother to school (I hate this part because I already know the material! It is wayyyyy too easy!)
• Mommy Math Time! (while standing up) Hate!
• EXERCISE — Super Girl lifts, toe curling, one arm raising and so on.
• Standing and watching TV.
• Eat lunch like mango and a PB&J.
• More standing exercises, sometimes typing on the computer, sometimes Facetime, reading.
• More exercises.
• Mom picks up little bother from school.
• Tutoring (this is soooooooo boring).
• Dinner.
• Facetime with my bff (he knows who he is!).
• More standing, reading or TV.
• BED TIME

Here I take a break from my list and I am going to tell you what the top ten best reality TV shows are that I am allowed to watch:

1. Project Runway
2. Project Runway: Junior
3. All- Star Academy
4. Kid’s Baking Championship
5. The Profit
6. Shark Tank
7. Cake Wars
8. Cupcake Wars
9. Guy’s Grocery Games
10. Chopped

We also like to bake delicious treats. I am inspired by some of the baking TV programs. My favorite is the Brownie (Chocolate Chess) Pie. Basically it is a brownie on the inside with a pie crust outer shell. NOTE: Serve with Dad’s French vanilla ice cream if desired. Another favorite is an apple and pear breakfast crumble. Put your filling of apples and pears together and then create a streusel type of crust top.

I write stories, too. The one I am working on now is called The Old Pioneer Westerner. It is about a girl and her family who, after being split up, work to make a better life for themselves. In 1847 they go from Colorado to their destination of Salem, Oregon. This story captures the heart of the American Dream.

Have you gotten to flap in my fins enough?

Well, that’s the end of my 3rd post!

-DJ Mermaid

I’ve been visiting elementary schools with my Seeing Eye dogs more than 25 years now, so it’d be reasonable to think I’ve heard every single question a kid would dream up when it comes to blindness or guide dogs.

That’s us at St. Francis Xavier. (Photo by Jackie Petrozzi.)

Jackie Petrozzi

But hey, who ever accused kids of being reasonable?

Last Friday afternoon my Seeing Eye dog Whitney and I took a commuter train to Wilmette, a Chicago suburb, to talk with 400 students at St. Francis Xavier School. School leaders wisely broke the students into two groups – I spoke with the kids between kindergarten and 4th grade first, and then spent an hour with the kids between 5th and 8th grades.

Teachers read my children’s book Hanni and Beth: Safe & Sound to all the younger ones before Whitney and I arrived. The older students prepared for our visit by watching our wonderful What’s it Like to Go Blind? video – that’s the YouTube the guys at The Good Stuff put together for us. With all that advanced research under their belts, the kids were armed with some very well thought-out questions when Whitney and I arrived.

In addition to asking the classic ones about how I get dressed, how I cook, and how I drive, the kids at St. Francis Xavier came up with some questions I’ve never been asked before:

• How long did it take to adapt to your blindness?
• When you write your books, how do you see the edits?
• You know how, sometimes, when the sun hits your eyes, and you squint, but you keep looking at the sun for too long, and then, you close your eyes real tight, and it makes you see colors? You know, like fireworks? Well, if you do that, can you still see those colors?
• Does your dog ever make a mistake?
• If they didn’t pick a dog for you, and you could choose your own Seeing Eye dog, why would you choose Whitney?
• How did you get here to take chances?

I really appreciate — and encourage — children’s curiosity, so I assure kids ahead of time that I’ll answer absolutely every question they ask during my presentations. I repeat each question before I answer it, too, so that one, I can make sure I heard it right; two, everyone in the audience can know what the question is; and three, most importantly, I have time to come up with an answer.

The kids were all seated criss-cross applesauce on the gym floor during our presentation, shortest ones in front, tallest in the back. That last question, the one about taking chances? It came from the front rows during my first presentation, which made me think the boy who’d asked was in kindergarten.

“How did I get to the point where I have to take chances?” I repeated. “Why do I have to take chances?” I’d never, ever been asked that one before. “Hmmm,” I said, turning my head toward the sound of the little boy who’d asked. “I’m going to need a couple seconds to think that one over.”

I started pondering my answer. Why do I still take chances? Didn’t I just break my hand in December after a fall? Wouldn’t you think I’d take fewer chances, seeing that I’m blind and all? Maybe this boy was right, maybe I should slow down….

Just when I was about to credit the kindergartner  for making a good point, he interrupted. “Not chances,” he said, sounding exasperated by his lisp. “Francis! How did you get to Saint Frances?” He just wanted to know how Whitney and I had managed to make it on our own all the way from Chicago to his school in the suburbs that day!

As promised, here’s guest post #2 by DJ Mermaid. In our hour together this past week she and I discussed some of the positive comments you left to her post last week. She isn’t quite ready to respond online to the comments you leave here, but trust me, she does read – and reread – them, so keep ‘em coming. Her guest post this week gives you a glimpse, ahem, of what a role model she is for me when it comes to self-advocacy.

by DJ Mermaid

Humans are very kind and helpful, even when you do not want it (although it is nice to have help “sometimes”). I have a physical disability and I get a “Do you want my hand, sweetie?” a lot.

DJ Mermaid and her little bother, er, brother.

I have cerebral palsy (CP) and I move a little different than anybody else does. Here are my tips on how to decline help when not needed:

• In public always do things with your head up high and with a confident air to them. (That makes people know you are a PERSON!) It also may reassure people that you do not need help.
• Say no politely when people ask you if you need help when you don’t need it.
• If people just grab your hand or another part of your body physically without asking first, say NO quite loudly!

I have had a few experiences that I want to share with you so that you can get in my shoes — or fin, as I should say.

I was in Schaumburg, enjoying dinner at Bonefish Grill with my grandparents. (If you go I recommend Bang Bang shrimp). We were walking down the sidewalk when out of the deep blue sea this weirdo woman extended her hand and expected me to TAKE IT! (I was doing quite fine on my own if you ask me.) Of course, like I should have done I ignored her hand and said to her, “No thank you!”

Thankfully I survived that, but sadly human nature struck again at school when I had a substitute teacher’s assistant one morning. My amazing mom and I ascended the stairs leading into the school facility when an aide walked out and put forth her hand to take me into the building. I brushed by her and said, “No thank you!”

Just before I went in, my mother hugged me and said, “The first thing this woman wanted to do was grab your hand. Make sure you educate her today.” DUH. I know, mom.

One person, though, treats me like all the rest. Introducing… my little bother — er, brother that is. He always wants to win games that we play, always wants more dessert and so on. Sadly with him I can’t use CP to my advantage. Although I sometimes despise him, he and I protect and stand up for each other.

At school once I heard some of his classmates making fun of me. Literally the next morning in SCHOOL (!!) my brother and the boys marched up to my desk and somberly apologized. I didn’t even know it, but my brother SCREAMED at those boys and he and his teacher made them apologize.

Well that’s the end of my 2nd post!

-DJ Mermaid!

Our friends Jim and Kathy Zartman invited Mike and me to a pretty cool event tonight. We’re going to a gala that benefits the Chicago School of Violin Making, and it sure sounds like my kind of party:

1. Starts early – 6:30 p.m.
2. Begins with a sampling of three to four wines
3. Promises ”substantial”  Hors d’oeurves along with the wine
4. Features a string quartet during cocktail hour
5. Ends with Acclaimed violinist Rachel Barton Pine playing a number of different violins – one of them made by the violinist from the quartet we will have heard earlier.

I’ve known Jim Zartman for nearly five years — his wife Kathy is in the memoir-writing class I lead on Thursday afternoons for Lincoln Park Village. Jim often drives Whitney and me to that class, and during those rides together over the years I’ve had the privilege of hearing his stories about growing up in a small town in Illinois, the mother who gave him his first violin, and getting free room and board in exchange for working as a houseboy for John Kenneth Galbraith’s family at Harvard. “They said they named their son Jamie after me,” he told me once. “But I’m not sure that’s true.”

Jim is not exactly forthcoming, but when I ask questions, he answers. In our 20-minute rides to class he’s shared stories of raising a family with Katherine, his appreciation for his talented grandchildren, his work writing the Illinois Power of Attorney Act and then getting it through the state legislature during his career as partner in the Chicago firm of Chapman and Cutler, and his role as president of the board of the Chicago School of Violin Making.

Jim and Kathy Zartman.

A couple years ago Jim arranged for me to have a tour of the school, wich is one of just three violin-making schools in the United States. Jessie Gilbert, a graduate of the school who took over for Jim as president of the board there last year, led my one-on-one tour. Her strong hands guided me along blocks of maple and spruce that were to become instruments, and I met teachers and students who had come from all over the world to participate in the schools three-year program — students aspire to the quality craftsmanship of the 17th and 18th century classical masters and are ready to enter the violin making and repair field as professionals once they graduate.

I didn’t stay long — it wasn’t fair to distract the students from their work. While I was there, though, I was taken by how quiet the workspace was  — no music to work by, just the intense sound of careful carving and fine sanding. And tonight, I’ll have the privilege of hearing Rachel Barton Pine perform on some of the results of all that hard work. This. Is. So. Cool.

In 1975 I was 18 and the world was my oyster. Actually, back then I’d never had an oyster, but you know what I mean.

I was a freshman in a triple dorm room that was pretty much identical to a double room except it had a bunk bed and three closets. Forbes Hall was all male, heavy on scholarship athletes, and each floor shared two communal bathrooms and showers.

And it was the absolute best. I’d finally gotten out of high school, away from my BORING home town, living away from home, at the University of Illinois, back then a stone cold bargain at under $500 for tuition. I was scared stiff and excited all at the same time. To me, Champaign-Urbana was the very best place in the world.

The UIUC Quad in February. Nutty.

A lot besides the tuition has changed on campus. Chain stores and restaurants and high-rises have replaced familiar old dives in campus town. The dorm complex I lived in has been demolished and replaced with digs that we would have considered palatial.

But still. My visit there this past weekend felt so familiar. To start I saw Barry, a Web developer whom I met at a job eons ago—before there was a Web. We played catch-up and I met some of his swell friends for the first time. Then there was Hanni (Beth’s 16-year-old retired Seeing Eye dog)—I stayed with her and Steven and Nancy one night.

Saturday morning Steven gave me a lift to visit another long-time friend, Jeff, who recently moved to new digs. Jeff showed me his in-progress renovation projects and we caught up effortlessly over coffee and homemade banana muffins. From there it was a healthy hike to Jim and Judy’s—friends and former neighbors—where we sat on their grand front porch and soaked in unseasonably warm weather and a springish breeze while we shot our own breeze.

It was so nice outside that walking was a pleasure, so I decided to hike the mile or two to downtown Champaign (which itself has transformed from a hollowed out ghost town to an entertainment district dense with restaurants and bars and music clubs).

The walk took me through campus—past some familiar sites like 60s era residence halls that looked exactly as I remembered them. The Krannert Center for the Performing Arts looked in good form. Designed by famed architect (and UI graduate) Max Abramovitz, Krannert is a one-of-kind place. One theater has superb acoustics and has been used by the likes of the Chicago Symphony Orchestra for recording. And there were some ancient houses that had long ago been converted to university offices and somehow survived.

And then through the center of it all, the Quad.

So much has changed but as soon as I reached the Illini Union at the north end of the Quad, I realized not everything has. It could’ve been 1975. It was 65 degrees and students were out in droves, in premature shorts and summer outfits. Quad dogs. Ultimate Frisbee. Blankets and picnics on the grass.

Instantly, intimately familiar. But there were no familiar faces, and so I felt, at once, totally at home and also like a ghost visiting my past.

The experience, though a tad unnerving, was ultimately comforting. Things change. There is loss. But some things—the feel of a cool breeze on the skin, friendships—abide.