So yeah, that really happened

Hi,

My husband Mike’s giving me a blog break again. Here’s his latest:

She’s back on top of the world.

Today Beth had her first followup visit with one of the cardiologists who treated her the morning of her emergency surgery. Three notes about our time with Dr. Ranya Sweis today:

1. She’s the best cardiologist in the world in my book, not to mention a helluva human being.
2. Beth’s doing great, on or ahead of schedule on all counts. She’ll be swimming laps before you know it.
3. Dr. Sweis recounted the events of that Thursday for both of us. I had most of it right, but she added some missing pieces. And her  account confirmed that when my own heart missed a few beats that morning out of fear that I was losing Beth, it was for good reason. I wasn’t over-reacting. Beth was on very thin ice. The team at Northwestern worked magnificently, heroically, efficiently. They have a lot to be proud of.

We’re lucky. And one of these days maybe I’ll feel lucky. And triumphant. Until then, I’m just content to feel a little numb and worn out and not so much lucky as … grateful.

Grateful that we have health insurance. That we flew Beth home from Vermont early. That she had her first scary incident in a cardiologist’s office, and that Northwestern Memorial Hospital was the nearest trauma center.

That I could get a concerned call at 5:30 a.m., take a shower, step into a cab and be at the hospital in roughly 18 minutes. That all those people with all that training and experience were there. Fantastic young people. Twenty-something Amandas and Beckys and Christophers and Laurens with knowledge and presence beyond their years.

Grateful that they all told me everything as soon as they knew it, before, during, and after the surgery. That Dr. Sweis made me promise her — after delivering the news that Beth’s heart had gone bonkers and had to be shocked back into rhythm, and that she was heading to emergency surgery — that I’d call a friend to be with me. That I made good on that promise, something I probably wouldn’t have done 25 years ago.

And that when I called our friend Greg he said he was on the first day of five days off. Greg’s a flight attendant. He never has five days off. “Do you want me to come down there?” I said yes. And he did. Within an hour. And he brought a fresh new Hav-A-Hank, some sugarless gum and salty junk food. And he shepherded me through the next few hours when I was in a kind of trance and couldn’t make mundane decisions about things like whether to go for a walk to get some fresh air or not.

Grateful that the cab driver who took me to the hospital on Saturday morning was tuned into WBEZ and This American Life. After I got in he turned it down to be polite. I asked him to turn it back up, and we rode to the hospital listening to David Sedaris read his story about his jazz-loving father’s record collection, his dad’s ill-fated attempt to enlist his children into his own private jazz combo, and listening to Sedaris’ uncanny Billy Holiday impressions. The cab driver and I laughed together the whole ride.

And grateful that family and friends made respectfully, perfectly timed visits that broke the hospital monotony. (And later, after the hospital, took Beth on walks, took Whitney on walks, and delivered meals to our door.)

I have relived those terrifying hours in the hospital, retold the story again and again;  I’m grateful to all of you who’ve listened. Once I start I have to tell it all, just to get to the good ending, almost afraid that if I get stopped in the middle it’d end differently. It’s crazy all the vignettes that still stream through my head.

I imagine the heartbreak of folks who do lose someone suddenly, unexpectedly; to illness, to accident, to violence. And I wish so hard that they all had our outcome. And I hope they have the kind of support I’ve had, we’ve had.

Thank you all.

Time for the next chapter.

A brush with danger

Here’s the illustration from the book that sparked the questions.

My friend Nicole Dotto and I both volunteer for Sit Stay Read (SSR), a literacy organization that encourages Chicago Public School kids to love to read. SSR uses dogs and volunteers in all sorts of clever ways: children read aloud to specially trained therapy dogs, human volunteers visit as “book buddies” to help individual kids, and people like me come as guest readers – the books we read to the kids always have something to do with, guess what? Dogs!

I haven’t been able to visit the schools lately with Whitney like I usually do, but…Nicole to the rescue! She read Hanni and Beth: Safe & Sound out loud to fourth-graders at the schools she was at this month, and sent me a fun homemade card listing the questions the kids asked when they got to the page where Hanni prevents me from falling into a hole. “What a perfect treat!” Nicole wrote. I had to agree, and thought I’d share some of those questions with you blog readers as a treat for you, too:

• What if there is a hole and her dog doesn’t see it?
• But what if she just doesn’t?
• What if Hanni falls into the hole first because she’s looking at a bird?
• After she falls, how does she find her toothbrush?

I bet whoever asked that last question has a great smile. Gotta love a kid who, even in the face of danger, keeps her mind focused on dental hygiene.

Hear no evil, see no evil

Heard the one about the deaf girl showing up at the Blind woman’s doorstep?

In our case, this was not a joke. I’m trying to slowly get back into the swing of things, so I stuck with a plan to have 20-plus students from a disability studies class at DePaul University come visit last Thursday. My memoir Long Time, No See is required reading for this “Explore Chicago” class, and students hop on the Red Line from Lincoln Park every semester to come see where/how I live and ask questions about the book. A story in DePaul Magazine about the teacher, Karen Meyer, explains:

She requires her students to draw from an extensive list of books, articles and films-including familiar titles such as “To Kill a Mockingbird,” ”Sea Biscuit” and “Frieda” — which tell stories about people with disabilities.

“They tell me they pick movies they’ve seen before, but after they see it with a different understanding, they have a completely different perspective. They’re looking for themes that they’ve never looked for before,” she says. ”We meet the author of ‘Long Time, No See’-we go to her house,” says Meyer, who is friends with writer Beth Finke.

Mike has been reluctant to leave me at home alone since my surgery. I’d be safe with Karen Meyer and her class here, though, so he was going to take advantage of that time and head to the gym. Our doorman called while Mike was getting his gym bag together. One student was here early, and he was sending her up to our apartment. The student never knocked on our door, and when Mike took off to leave he saw her sitting on the floor in the hallway, looking at her phone. She pantomimed to him, and Mike understood right away. “Are you deaf?” he asked. She read his lips and nodded yes.

Most of the students in this Explore Chicago class are average kids who want to learn about disabilities. This is the first time one of them had a hearing impairment, and mixing a person who is blind with a person who is deaf can be, well…awkward. We disabled types are a resourceful bunch, though. I was confident we’d manage. I let Mike usher our guest to a seat at the breakfast bar, and I shooed him out the door.

The student was probably perfectly happy looking at her phone while she waited, but I couldn’t see to know that, and if I asked, she wouldn’t hear me. What to do? I gave her a copy of my children’s book Hanni and Beth: Safe & Sound and headed to my room to change clothes.

I have a special clipboard that has a line guide. I used it to leave a note for Carla.

I heard her thumbing through the pages for a while, but by the time I returned to the kitchen, the page-thumbing had stopped. I still had some things to do to get ready, but I didn’t want our guest to feel like I’d abandoned her. Eureka! My clipboard!

I’d also hoped to get some quick email messages out when I’d finished in the bathroom, but with a guest sitting in the kitchen alone, I didn’t feel right hiding away in my office. Wait! My talking computer is a laptop. I could bring it into the kitchen! I started typing there , and it dawned on me. I used my pointer finger to call my guest over to the computer keyboard, then pointed at the screen. . “This is how I type,” I wrote. “My computer talks. What is your name? She came to the keyboard and started typing. C-a-r-l-a.

We were in business! It was like TTD, except Carla and I were in the same room. I’d type, she’d read the question and answer. I’d manipulate the keys on my talking laptop to hear what she’d typed, and type out a response. By the time the other students finally arrived (they’d been waiting for Carla downstairs, of course!) I’d learned she lives in Rogers Park, she has one sister who is  only two years old, and sometimes it gets tiring chasing her around the house. “Will you sign my book for me?” she wrote, placing a copy of Long Time, No See in my hand. I signed it in print and in Braille. “To my new friend Carla.”

A sign language interpreter had arrived along with the group of students and stood next to me as I gave my presentation. The only thing that might have tipped them off that I had open-heart surgery weeks ago was seeing the beginning of a scar at my neck. That, and my request to sit on the piano bench rather than stand as I spoke to them. Based on last week’s success, I’m keeping a commitment to speak at a retirement community tomorrow on the benefits of memoir-writing. This Friday Mike and I are attending a birthday party for one of my favorite 80-year-olds, and next Monday I have appointments with the cardiologists who saved my life last month. After all that? I think we’ll rest.

Great Lake, great dog, great friends

You might remember the guest post my friend Chuck Gullet wrote (and the memorable photos he took) a few years ago when he came along on an appointment to get my fake eye polished. Chuck is one of the volunteers who has been taking Whitney on long walks while I recover from surgery, and here he is with a guest post about walking with Whit. 

Walking Miss Whitney

by Chuck Gullett

What could be better than this?

It’s not just a walk in the park when you have a highly trained guide dog at your side. As soon as Whitney and I step outside, I can immediately tell that Beth’s Seeing Eye dog has a ton of pent up energy and also wants to test out her new walker. After she sniffs around and pulls me from tree to tree, Cesar Millan, the Dog Whisperer, is channeled through me. It is time to get down to business and start that walk.

Whitney knows that I’m not Beth. She also knows that she really isn’t “on duty,” but I still have to cross the street at the corners and have her sit to wait for traffic. I think these walks might actually make me a more responsible pedestrian and give up my jaywalking ways.

Whitney is a pretty cool character while we are out. I’m not supposed to let her mingle with other dogs, but that’s not too hard. Other dogs check her out and try to pull their owners over, but Whit just struts by without giving much notice at all. We are on a mission, after all. The mission is to get to Lake Michigan.

Beth and Mike mentioned that Whit really likes the lake. So, of course, that’s where I decide to walk her. As we start getting close, the pulling gets stronger and stronger. She doesn’t just love the lake, she is freaking crazy about it. The edge of the harbor area is about 10 feet above the water. Without the leash, she would have been in the water in a second.

Well…this!

I walk her over to a bench where we sit down and try to relax a bit. That seems to work until the ducks come flying in. What’s better than a lake? Obviously… a lake with ducks. We went over to check them out, but it had to be a very brief introduction (no pun intended). My arm was getting worn out from holding her back and it was time to head home.

Whit knows the route home pretty well, but she really slowed down the pace on the way back. Worn out or just procrastinating? I like to think she just wanted more quality time with Uncle Chuck — we both had a good walk.

It’s me, Beth again with a shameless plug — besides being a primo dog walker, Chuck’s a real estate broker. If you’re looking for a place in Chicago, give him a call: 312-593-1436

Where Whitney was

People have been asking if Whitney stayed with me while I was in the hospital last week.

She did not.

That’s Greg with his and Lois’ dogs Gamma and Griffin.

Legally, I could have had her in the room with me — Title III of the Americans with Disabilities Act allows those of us who rely on service dogs to have them along in hospital rooms. All bets are off, however, if the dog constitutes either a “fundamental alteration of goods and services available for all” or a “direct threat to safety.” So while Whitney could have legally sat at my bedside once I was recovering in a regular hospital room, she would not have been allowed while I was in ICU. She wouldn’t have been with me in any sterile rooms (such as the operating room). Certain areas of the emergency room/departments would have been forbidden, and she wouldn’t have been able to ride in the ambulance with me to the hospital in the first place — even Mike had to follow behind in a cab.

Hospital staff cannot be made responsible for caring for a service dog while a patient with a disability is in the hospital, and I’m afraid my case left doctors and nurses with bigger problems to solve than figuring out when and where to take Whitney out to pee. The truth is, we never even thought of asking my Seeing Eye dog to sit still and behave at my hospital bedside while I recovered. It wouldn’t have been fair to an energetic ball of fur like her. I didn’t need her to guide me anywhere, and she would have been bored out of her mind.

Our dear friend Greg Schafer rushed to the waiting room after cardiologists recommended Mike call a friend to be there with him while I was being operated on. After surgery was over, Greg offered to stop by our apartment and fetch Whitney, take her home with with him for a few days. Greg and his wife Lois have a huge yard with two dogs and all sorts of other critters. Whitney spent the weekend there tracking deer and enjoying long walks while Mike spent time helping me recover at Northwestern Hospital.

Greg and Lois returned Whitney to Chicago on Sunday. After getting her settled in our apartment, they stopped by the hospital to regale Mike and me with details of ways Whitney spent time with their own beautiful dogs, Griffin and Gamma. Their stories really cheered me up. Whitney was there to greet Mike at home that night, and she was at the door waiting for me when I finally returned home Tuesday. A joyful reunion for sure.

That’s Whit wearing her Gentle Leader.

Surgeons had to cut my sternum to perform open-heart surgery, and until that bone heals I can’t let Whitney wear a harness and pull me. Trainers at the Seeing eye have dealt with graduates who have had open-heart surgery before. Until my sternum heals, they recommend I have Whitney wear a Gentle Leader, a collar designed to gently discourage dogs from pulling while walking on a leash. Mike comes along on my walks with Whitney, and each day the length of our cardio walks expands a minute or two. Neighbors are getting used to seeing me sauntering down the block with Whitney on my left, Mike on my right: a heart-healthy sandwich.

Friends have been volunteering to take Whitney on faster walks every day too, to keep her in shape. Others fill in for Mike when he isn’t available to take me on the slower-paced walks. Between these volunteer walkers, the friend who brought her violin over to perform for me, the ones who have sent or delivered food, friends who have sent cards and music CDs and concert tickets and audio books and get-well bracelets and a lounging gown and body lotion and flowers and gift cards and whew, you’ve all been so kind I need to stop here to take a breath before I go on: my lungs aren’t back to normal quite yet!

Pause.

Okay, I’m back. Thanks to all of those friends and all of you blog readers who have left such encouraging comments here on the blog, I feel loved, and I feel grateful. I’m alive, and I’m healing. And I’m looking forward to getting on the road again with Whitney.

For my first cardio rehab walk, I’m heading to 7-Eleven for a Megamillions ticket

Mike chauffeured me home on Tuesday.

Listening to Mike read all your loving and glowing blog comments out loud to me in my hospital room over the past week sometimes gave me the feeling I was attending my own funeral. Doctors did have to shock my heart back to work last Thursday, so it was kind of like that. But I’m still here, and I’m more grateful than ever for my wonderful friends and family.

I am a lucky girl.

Turns out the cardiac surgeon who happened to be on hand to do my emergency open-heart repair job last week is one of the top cardiac surgeons in the United States. Patrick McCarthy came to Northwestern Memorial Hospital via the Cleveland Clinic. And a Couple nights ago, he came to my hospital room to introduce himself and see the miracle girl sitting up in a chair and talking. The benign tumors he’d removed were like a sea anemone, he said. “It was flapping around your aortic valve and attaching itself here and there for a while, and then flapping around again.” He’s done over ten thousand heart surgeries and has seen a benign tumor on the aortic valve a few times before. Never one this big, though. He said it was as big as a marble.

The famous doctor sounded very pleased to have a photo of the tumor he could send to the cardiologist who’d had me ambulanced here last Wednesday. “It really is very exciting.” Considering the outcome, I had to agree.

Mike and I both thanked Dr. McCarthy profusely before he left the room , of course, and I told him surviving all this has given me a lot to ponder. As we shook hands to say goodbye, I jokingly asked if he thought I should join a religious cult now and move to an underdeveloped country to help people less fortunate. Dr. McCarthy didn’t bat an eye. “No,” he said. “I think you should buy a lottery ticket.”

Miracle girl lives!

Wedding day, July 28, 1984. Thanks to some terrific people, me and the miracle girl can look forward to another anniversary. (Photo by Rick Amodt.)

Hello everyone. It’s still me filling in for Beth. She’s home — from Vermont, anyway — but a funny thing happened on her way back to the blog. Many of you already know the story — for those who are reading it for the first time, apologies for the scare. But Beth and I pieced together the following account because we thought you’d want to know. We’re still sorting some things out, so don’t be surprised if we don’t respond right away. Thank you for reading—Mike

Beth had emergency open-heart surgery Thursday morning, and she is OK. More than OK. She’s recovering remarkably well, crazy remarkably well, at Northwestern Memorial Hospital. I just left her room. She is walking the hallways, with a guide, and still attached to surgical drains.

The docs and staff who got her to this point have been streaming through over the past couple days and they all come through Beth’s hospital room door saying, in a tone of amazement, “I just wanted to lay eyes on the miracle girl.”

For the past two weeks, starting when Beth was still in Vermont, she had been experiencing infrequent burning sensations, followed by pain in her chest. Our friend Debbie Wood had a heart attack in her 40s. Debbie works at Northwestern University and by chance was involved in the design project Beth worked on there last month. During that time, Debbie reminded Beth to see a doctor if she ever had any chest pain. “Women tend to ignore them,” she warned. “It could be serious.”

Friends from New Hampshire drove to Vermont and brought Beth to the Burlington airport and she flew home, earlier than planned, to me. At home, her pains seemed to increase in frequency. But they didn’t fit the description of angina – no swelling in the ankles, no lightheadedness, and the pain didn’t spread into her arms or back. Rather than go to the ER, we had our endocrinologist get Beth in for an appointment for a stress test/echocardiogram last Wednesday afternoon at a downtown cardiologist’s office.

That’s when the sh-t hit the fan. Beth had what was technically a heart attack while she was on the treadmill. A Chicago EMS crew rushed Beth to the Northwestern Emergency Room in an ambulance. Followed by me in a cab.

Her angiogram the next morning showed, against all reasonable expectations for someone who’d been diabetic 47 years, that Beth’s arteries were clear. When the cardiologist came from the cardiac catheterization lab to brief me, she said, “Dude, I hope my arteries are that clean when I’m 54.” Which sounded like good news. Except it still left them not knowing what the problem was. And that’s when Beth’s heart went into fibrillation. They had to shock it back into rhythm.  No time to spare now. No decision , either. Open heart surgery.

A dozen staff frantically prepped her for surgery, like a scene out of House. When the anesthesiologist came with release papers for me to sign, and just before they wheeled her away, he said, “ She’s unstable. We’re going to do the best we can do.”

It was only on the operating table that they solved the puzzle — why she had been experiencing chest pains over the past couple weeks. We worried that it had something to do with that staph infection she’d gotten back in Vermont. Or coronary artery disease, which diabetics are more susceptible to than the general population. But no. They’d found — and removed — three benign tumors on Beth’s aortic valve. Such tumors are uncommon. But Beth was, as is her wont, one-of-a-kind. In the surgeon’s words, “I’ve done 10,000 operations and I’ll tell you — one of these tumors was the biggest I’ve ever seen. It’s more than a centimeter.”

He explained that the tumors flapped when Beth’s valve opened and closed. And one of them, the big SOB tumor, intermittently cut off blood flow to Beth’s heart. Leaving her with a burning sensation followed by pain in her chest.

And so, through the combination of some good decisions, some absolutely terrific, wonderful, heroic medical staff at Northwestern Hospital, the good wishes and support of our wonderful friends and family, and, some simple good luck, Beth will be coming home to me again early this week.

Beth will be coming home to the blog eventually, too, and I probably will do a post or two on the subject. There are people to thank, wonderful friends, family members, and complete strangers. And probably a lot of thoughts to be sorted out via writing.

Until then, please, take care of yourselves, and each other.