The museum provides a moving, solemn experience.

A lot of you have been asking me how everything went during my Tuesday visit to the Illinois Holocaust Museum in Skokie. The Visitor Experience Coordinator there (along with a museum consultant) invited me to come Tuesday to take a tour and do an accessibility review and walk-through of the museum on behalf of people who are blind–all part of a much-appreciated effort to make the museum more accessible to people with disabilities.

In a word, the whole experience was … overwhelming. Knowing this would be the case, they included this reassuring paragraph in the initial invitation:

We realize this is a long day and difficult subject matter. We’ll take breaks as needed that may include coffee breaks, fresh air outside, or anything else you may need.

Disclosure: I asked to be helped outside once, during the live presentation by a holocaust survivor. Thinking about that now, I’m kind of ashamed. Here I could just leave and get away from it for a bit. People in concentration camps didn’t have that option.

But let’s start at the beginning. Before our tour began I was introduced to Maureen, a lively and engaging woman who is deaf and has a cochlear implant. She had been invited to assess the museum from her point of view.

We were told right from the start that the entire museum is built of rough concrete to give visitors a sense of how harsh the holocaust experience was. “Could you lead me to one of the walls so I could feel it?” I asked, giving Seeing Eye dog Luna the “follow” command so I could get a sense of just how big and rough each square of concrete is.

Every room at the Museum felt cold and stark, which I learned later was the late architect Stanley Tigerman’s point: he wants visitors to feel a sense of foreboding while walking through the exhibits. A cool idea, except for this: most of the rooms are so large that they echo like crazy. Many have multiple video screens hanging on the walls that I assume featured holocaust survivors telling their stories, but with so many playing — and echoing — at once I couldn’t hear the narrators.

Neither could Maureen, who said that one of the worst situations for her to be in is one where two different voices are talking at once. The videos do have captions, though, so she was able to read them to keep up.

The Visitor Experience Coordinator and the Museum Consultant were with us the entire time, welcoming our comments, asking questions and taking notes. “Would it help if we had a sign that said that in Braille?” “Can you tell the floor is slanted downward when you’re walking here?”

They gave helpful explanations of the photos, artwork and artifacts hung on the walls, but any time I reached out instinctively to touch one, I’d get the same three-word response: “It’s under plexiglass.” Made perfect sense. The items were all precious, important parts of history. Knowing me, I would have dropped one of them!

Seeing Eye dog Luna led me through some of the exhibits, and the Visitor Experience Coordinator led me sighted-guide through others. The one thing that was easiest for me to take in was the hologram – only one screen in that room and no problem hearing the monologue.

We all sat down after the tour to throw out some suggestions of ways to make the exhibits more accessible, places where audio description could work, exhibits that could use more captioning, and how and where tactile maps might be helpful. The Visitor Experience Coordinator and the Museum Consultant thought it might be a good idea to form a Disability Advisory Committee of people with disabilities to meet quarterly. “You know, they might have other advice and ideas to share about accessibility.”

I am  ever so appreciative of the efforts the Illinois Holocaust Museum and Education Center is going through to make their space accessible to all. And bonus points to them for getting answers to their questions right from the experts: people who have disabilities!

Check out the museum website.

This Tuesday, April 11, I’ll be one of a group of people with different disabilities doing an accessibility review and walk-through of the Illinois Holocaust Museum in Skokie, Illinois.

It’s going to be a long day: the review and walk-through starts with an orientation at 9 a.m. followed by an explanation of the Accessibility Advisory Committee. We’ll walk through the exhibition spaces together and then share our feedback of the experience and answer questions like “What is accessible to you?” “What needs improvement?”

In addition to walking through the exhibitions, we’ll hear part of a program with a holocaust Survivor and try an interactive hologram where we can ask questions of a hologram of a Survivor.

It’s an honor to be asked to participate in accessibility reviews like these, especially when the organization understands that making museums and cultural centers accessible to people with disabilities help everyone. And the staff at the Illinois Holocaust Museum does understand that. From the invite they sent: “We strongly believe that having a group of people discuss accessibility with us is one of the most valuable ways to understand how to improve the museum experience to accommodate all visitors.”

The invite acknowledges that the review “makes for a long day and difficult subject matter” and assures us we’ll take breaks as necessary, including coffee breaks, fresh air outside, or anything else we may need.

It’s sure to be an interesting day.

Hats off to our neighbor Ruth: without her offer to drive Luna and me to the Illinois Holocaust Museum Tuesday morning, I wouldn’t be able to participate in this important project.

Thanks for all the kind wishes, the soups, the meals, and the cards after last week’s blog.  (It’s amazing how nice it is to get cards via snail mail.)

I’d like to lighten it up this week. I’d like to. But.

Beth’s mom Flo was famously resilient. Her husband died when he was only 47, leaving her with what I’ve calculated to be 115,000 children to raise. She, without a high school education, had to figure it out.

She did, and lived to 98. In her later years, which constitute an entire lifetime for some people, we marveled at not only how she got there, but how she weathered losing one loved one after another. And how she did that knowing that it wouldn’t get better.

So I’m wrestling with trying to get some what she had. On the other hand, I don’t think it’s the same for everyone.

When my father died in 1991, it was like getting hit by a truck. It was my first significant loss, and as such, in a way it remains my most significant loss. I draw on that experience again and again.

But I and my contemporaries are at a stage where it’s different now. Because, while  the emotional well doesn’t dry up, I simply don’t have the resilience or stamina I used to. Every time someone we love dies now, I cannot endure what I felt when my father died.

It was my great pleasure to know Robert Krughoff.

I don’t think there’s a formula for this, I just know I need a way of processing it. I’ve thought about this a lot over the past year. And about mortality in general, but it came to a kind of cathartic head yesterday when I learned that a former boss, mentor, role model and finally, friend, died yesterday at home in hospice care.

I’ve written about Robert Krughoff here at the blog before, a brilliant, dogged, demanding, tough, and compassionate man. Much of what I’ve managed to do right in my life—professionally and personally—is owed to the time I spent under his tutelage.

If I got called into his office to discuss a research project or a draft article, I’d  best be prepared. He’d think out loud, with a very distinctive stammer that was halting and could make you impatient—instead it kept one hanging on what the next thought was, and how to respond. Those of us old enough remember the movie “The Paper Chase,” which followed a law student’s experience with a demanding instructor played by John Houseman. Those kinds of scenes played out in Robert’s office again and again.

It wasn’t always pleasant, but I’d do it again in a heartbeat.

That’s my selfish take on it. What he did for me and what I’ll miss. But the guy had an enormous impact, an impact that you’ve probably benefited from without knowing it. He fought to get the government to release data about health outcomes to help others make better informed choices about health care. He was way out front in this endeavor. You can look him up.

As just a hint of the gravity of his work, here’s an article he co-wrote with two other authors, one being former Secretary of State George Schultz:

More Transparency, Better Health Care

It’s hard to think that the linchpin of what was a seminal period of my life is gone. What I have left are some great memories, a sharpened sense of critical thinking, the ability to always see how my work can be better, and the ability to make the work of other people better.

More than all that, I have loving friendships that have endured and thrived for more than 40 years.

For all of this, I thank you Robert Krughoff.

You can read a take on Robert’s life and work here at The Washington Post.

On September 28 last year, Beth and I were in Lake Geneva, Wisconsin, thanks to the generosity of her nephew Ben—who owns a sweet little condo right off the lake, and who let us take a break from downtown Chicago.

We got a call – our friend Brad had died after having seemingly survived lung cancer, only to have it roar back in multiple forms. Beth and I were scheduled to stay another night in Wisconsin, but after a very brief talk, we decided to head home to be with our friends, friends who had rallied around Brad to the very end. It was really no decision at all so much as a need.

I’d been working at my laptop at the breakfast bar, and when I stood from the stool to start packing to leave, I was frozen in excruciating pain. My lower right back and hip just radiated misery, and I couldn’t bear weight on my right leg. I remembered that the condo had a jacuzzi—Beth started the hot water and I more or less crawled to the tub. She found the switch for the jets, and I got in and curled up so that they fired on my back and hip.

It worked—I managed to get in the rental car and get us home, and we met our friends at the local watering hole where we’d hung out with Brad. It was therapeutic.

My back remained irksome—and I lost feeling in a couple toes and my foot flopped, so I saw my Dr. I had an MRI and got a call with the results—I had a herniated disc that was pushing on nerves. These nerves, the Dr. explained, controlled my leg, as well as my bodily functions, so I’d best see the spinal surgeon ASAP. Two weeks later, Beth and I sat in the specialist’s office. He showed me the images of my spine and my hoodlum disc. After some conversation, we decided I’d try physical therapy and then come back.

After two weeks, I was still limping, but my foot and leg were measurably stronger, so we stayed the course with PT and no surgery. It was a slog. I was restricted from lifting or any physical vigor. In our household, that required a lot of creativity. Beth has always been able to take the garbage to the chute just down the hall. But recycling requires navigating to the bins in our loading dock. Where there is recycling, there is a way. We got the communal cart that we typically use for groceries and big packages. Beth loaded the recycling bag, and I pulled the cart with Beth in tow. I guided us to the recycling bins, and Beth lifted and emptied the bags.

And so it went. I had groceries delivered and transferred them from a table in the lobby of our building to the cart by more or less tipping the bags over onto the cart. I unpacked the lightweight stuff and Beth took care of the rest.

Come Thanksgiving we ordered a fresh local turkey from our little market down the street. When it came in Beth brought her big backpack and I guided her and our turkey home. Beth put it in the fridge and when it came time to dry brine it, she lifted it out of the fridge and put it on the counter. When I was done, she returned it to the fridge.

On Thanksgiving day, she lifted it into the roasting pan. Together, we lowered the roasting pan into the oven—she grabbed one handle, I grabbed the other and I guided us onto the baking rack.

That’s also how we took it out—teamwork—and for the record, the turkey was fantastic (not dry) and also yielded some great broth.

And that’s how it was for several months. Together we applied the same kind of creativity that Beth and I had to find when she lost her sight nearly 40 years ago, the kind of ingenuity that Beth has to employ to navigate her life to this day.

On December 23 (Beth’s birthday and Festivus!) I had a routine skin check. I’ve had some pre-cancerous stuff removed in the past, so these checks have become a regular ritual. My regular dermatologist was on leave so I saw a different doc. She introduced herself and said, “Word on the street is you have a lot of moles.” Not exactly the reputation I’d cultivate but she wasn’t wrong.

Two spots were suspicious, and both were biopsied and I got stitched up and went home. A week later the results indicated one of the two areas was a real problem. The good news is it was caught early, the bad news is it sits in an awful spot—just above the knee on the inside of my thigh, where things bend.

I’ll save you the gory details save to say—they’re gory. I have a gazillion stitches that bark at me every time I move. They’re coming out Friday but it’ll be awhile before I can do stuff like exercise. This after finally being cleared for the treadmill after months of PT for my back.

And just to top things off, on Saturday, I was making room in the refrigerator to store a big old pot of sloppy Joe’s that I’d made for a neighborhood get-together Saturday night.

As I pushed stuff back on the left side of the shelf, a giant jar of pickles squirted out the right side and landed squarely on my barefoot right big toe. I screamed. Beth ran out of her office to find out what was wrong. I cursed. I iced.

I returned to our chaise lounge, which has been my nest for the past several week. Leg extended, ice pack on my stitches, and now, frozen peas on my toe. A thoroughly inglorious existence.

At this point I was pretty sure I’d skip the party and send the sloppy Joes with Beth and stay on the chaise where I could do no more harm. One of our friends, Steven, offered to drive me the two blocks and promised to take me back home whenever I needed to go.

Ultimately, I donned my sweats, and slippers (regular shoes were too painful for the toe) and Steven brought me door-to-door. I hobbled to a couch, our party host Ruth brought me an ice pad, and I roosted.

Our friend Jim brought me food, our friend Laura brought me beverages, and I had a great time, much better that I would’ve had moping on the chaise.

That very morning our friend Colleen had delivered a care package that included her world famous minestrone (along with some grated parmesan), frozen pesto, and fancy dried pasta. Beth had engineered her visit, which was a surprise, and I about cried. OK maybe I did a cry little bit.

I’ve had some very painful and low-spirited times in the past few weeks. Ultimately, they’ve left me humbled and more grateful for life than I’ve ever been.

I’m lucky because I have good health insurance. It would’ve been easy to avoid that skin check, and if I weren’t insured, there’s no doubt I would’ve skipped it or put it off. And that probably would’ve been it for me.

I’ve got kind, sharp-witted friends who are steps away, and who made me completely forget my stitches and my toe Saturday night.

And best of all, I have a beautiful and intrepid partner who can help me get a turkey in and out of the oven. What else do you need?

José with his wife, Kate .

What a pleasure it is to feature José DiMauro as our guest blogger today. Born in Argentina, José graduated from medical school at Univ De Buenos Aires and left home in 1963 to start his medical career at Chicago’s Mercy Hospital. From there he became a board certified pathologist at University of Illinois in Chicago.

After retiring, Dr. DiMauro and his wife Kate moved to Admiral at the Lake, where I lead a weekly memoir-writing class. For Valentine’s Day this year the prompt was “Before I Met You.” This exquisite essay José read out loud in class wowed us all, and he has generously agreed to let me share it with you Safe & Sound blog readers here, too.

Greta

by José DeMauro

Trying to stop the passage of time, an old memory lingers Between 1943 and 1946, when I was somewhere between nine and twelve years old. It was then that I met you, Greta.

Remember?

My father had bought that lot with the old house in the back. We moved into that old house while he built the new one up in front, the one your parents rented. That rental was meant to be temporary, until father recouped some of his expenses. It lasted for a couple of years, not more than 3, I believe. We moved into the new house after your family left.

Your parents spoke Spanish with an accent. It was said that your father was French and your mother Russian. But that could have meant anything: in Argentina we called anybody from Eastern Europe “Russian.” At the time many people were coming to Argentina from eastern Europe. I didn’t know about those things, but I suspect now that your parents may have been Jews escaping the pogroms.

Your parents looked somewhat out of place in the neighborhood, particularly your father, the owner of that hair styling salon on the main street.

You were their only child, at least two years older than me, weren’t you? You were tall, thin, vivacious, and smart. At least I thought so! You had short hair, most likely your father cropped it, didn’t he?

Let me tell you why I am thinking of you now. There was a patio inside that house my father built. We used to play there. My sister would play with us, too. Do you remember?

When I think of that patio, I mainly see the light, particularly that summer. It was vacation time. I’m guessing it was noon and the sunlight came straight down, leaving no shadows. It was hot, too. You and I were left alone on that patio, seated on the tiles with our backs against a wall and you, you suddenly turned towards me and said, more of an order than a request, “Kiss me!”

At the time, I only lived to run around with the neighborhood boys. I was not troubled by the thoughts of girls.

That day we were two children seated side by side, and suddenly quiet under the bright hot sun.

“Kiss me!” you almost commanded. I hesitated, kept looking straight ahead to something that I was not seeing. But there was an urgency in your voice.

So I turned my head and kissed you. On your cheek as I remember. Maybe it was the heat or the sweat, but it tasted salty.

Your family moved out of the house shortly afterwards. Only once, soon thereafter, we crossed paths on a sidewalk. You were with your mother, and I was with mine. Our mothers ignored each other, but you waved your hand to me with a smile, and I did the same.

I still keep an old small black and white photograph of you standing side by side with my sister and me. It is a bit out of focus, like my memories.

But I still clearly remember that kiss.