circling back to say thanks

When my husband was just 26 years old he started to experience some strange health deficits: slurred speech, droopy eyelids, difficulty swallowing and weakness in his extremities. We'd only been married a year. It threw us for a loop, to say the least.

Eddie had previously been very healthy. We didn't know what was happening to him; the doctors we saw weren't sure either. After a couple years of being poked and probed, being told it was "all in his head" and eventually being misdiagnosed, Eddie began taking meds for a disease he didn't have. The meds he took for that disease nearly did him in. At our wit's end, we finally checked into the hospital at the University of Michigan, determined to stay there until we got some answers.

Early on during that hospital stay a young resident walked into the room. His name was Joshua Cohen, and he and Eddie were about the same age. The two guys had a lot in common; they hit it off very well. The young Joshua Cohen seemed to make it his mission to give us a proper diagnosis. Over the course of the next three weeks, Joshua, our new friend, worked overtime to help one of his very first patients. The diagnosis was Myasthenia Gravis. With medication, Eddie has lived a full and active life, and it's really because of a young resident who put his nose to the grindstone and didn't give up until he had successfully solved the puzzle.

Fast forward 40 years. Our son Max is in medical school. Soon enough he will be a resident. Like Joshua Cohen. Eddie recently told Max the story about how important it was for him to get a proper diagnosis.  How it saved his life. As I heard Eddie and Max discuss it, I realized we had never really had a chance to thank Dr. Cohen. I suggested we do that.

Eddie: There are probably a thousand Dr. Joshua Cohens out there.

Me: I bet we'll recognize him.

Thanks to Google, it took about three minutes to find our unsung hero. Eddie wrote him an email, expressing our gratitude and hoping he'd remember us after all these years. Of course he did. Eddie was one of his firsts. How could he forget?

Dr. Cohen wrote back immediately. During their correspondence, Eddie mentioned that Max was in medical school. Now Max and Joshua are in touch. Eddie was not the only one to express appreciation for Joshua's astute investigative skills, tremendous smarts and unwavering dedication; Max said "thank you," too. As the son of the patient - and as an aspiring physician.

It's a feel-good story. I thought it was worth sharing.

Dr. Joshua Cohen

Eddie and Max

PS - I'd like to congratulate Max, who found out yesterday that he is the recipient of a 2016-2017 Fulbright. He will use the grant to do research on antibiotic resistance in Colombia, South America, where he will live for the next year. His dad and I are very proud!

max

As my regular readers know, son Max recently completed navigating the medical school application/interview process and made the decision to attend school at Case Western Reserve.

In mid-July, Eddie and I kvelled as he received his white coat (during an emotional and inspiring ceremony at the University). The year-one med students at Case are an impressive/interesting bunch of young men and women, and we were thrilled to applaud each and every one of them as they embarked on the long journey toward becoming physicians.

Max has taken it upon himself to line up opportunities to "shadow" docs from all different disciplines. This week he tagged along with a palliative care doctor. He wrote about the experience and agreed to let me share it here:

With regard to patient care and the actual palliative care doctoring, the first thing I noticed ­before we even saw a patient ­ is that Dr. M had a full hour scheduled for new patients. This relatively generous amount of time seems to me like a huge plus compared to the 15­ minute time slots that I understand are imposed upon primary care docs.

As much as I disliked God’s Hotel, the required summer reading before starting school, the author’s message about the power of ‘slow medicine’ appealed to me and was, as far as I could tell, a central tenet of Dr. M’s practice. Big plus.

Without a doubt, Dr. M’s clinical interactions with her patients stand out as the highlight of my experience. In the four hours I spent with her, we saw a whopping total of three patients, all of whom presented widely varying personal histories and demographics, but who all shared terminal cancer diagnoses. The first patient, a gentle, older black man, was sweet yet reserved. He didn’t push Dr. M with a challenging attitude or pull at my heartstrings with a particularly moving story of his diagnosis and the challenges I imagine that’s brought him. Dr. M reciprocated his gentle attitude and worked with him to make sure he was receiving the medications he wanted (emphasis on the medications he wanted) to help manage his pain.

The next patient, a middle-­aged white man, transported me straight back to my soup kitchen days with his rough­-and­-tumble ‘everyone’s out to get me and screw the world’ attitude, from which he didn’t spare Dr. M, to be sure. He spent his whole hour complaining, understandably so, ­about his pain, his bad luck in life, and the fact that Dr. M didn’t want to give him an exact timeline on how long he had left to live. When she finally relented and provided the vague answer of ‘months, not years,’ he assumed a 6­-month prognosis and let it rip from there. Expertly wading through the slew of angry and logically incoherent complaints and irrelevant questions that followed, she finally got him to crack on an issue that placed a rock­-solid lump in my throat: ‘Who are you going to talk with about your frustrations when you leave my office?’ Sadly and unsurprisingly, he couldn’t count a single person who he thought would care to hear that he was going to die sooner than later. Despite his attempts to push the world away from him as the world pushed him slowly away from it, Dr. M planted the seed in his mind ­that despite all his protests, perhaps he could talk with a professional at the hospital. But maybe ­­only if Dr. M really thought there was a top-notch person who didn’t suck like all the others he had apparently tried. Her perseverance and unrelenting care for her stubborn patient moved me and made me want to do what she was doing.

The last person we saw, a thirty­-something Latina mother of one, couldn’t have been a more stark contrast from dude number two. She smiled profusely and showed grace with everything she said as she let the chemo run its course during her chat with Dr. M. She talked about how excited she’ll be when her son makes it to college in five years, despite the fact that, as Dr. M mentioned to me afterward, she herself will have already succumbed to cancer. This woman gave me a first­hand glimpse at one of the strongest shows of courage I’ve ever seen.

That Dr. M got to participate in these incredibly trying times in her patients’ lives made me think very highly of palliative care. When asked, she told me her favorite part of being a palliative care doc is that she’s uniquely positioned to help her patients in ways that other doctors can’t. ­­ I’m inferring that she was talking about her ability to help people feel comfortable as they near life’s end.

It was an incredible experience.

Good luck to Max and all the other year-one med students. May their sense of optimism, idealism, doggedness and compassion serve them well. And here's to the established doctors who will inspire them on their journey

the grandchidlers

It was a wonderful week. A visit from children and grandchildren.

i didn't write the headline

I have been working on an essay about a very personal story. I wrote it in honor of my son, Max, on the occasion of his 25th birthday. When he came home to visit recently, I read it to him as a bed time story. We hugged and cried. And said I love you. A lot.

Later I asked if it'd be OK if I shared the story. He did not hesitate to say of course.

It's the cover story in today's KC Star Magazine.

new orleans

My nephew got married in the Big Easy this past weekend. That meant getting most all of our family together, which is always a huge treat. Here are a few photos I made of my children and grandchildren.

love note chain

When Eddie and I were on the beach yesterday, we wrote a message in the sand, took a picture of it with the cell phone and then texted it to Abbie, Sam and Max.

Within a couple minutes, we received this from Max. He was in the library (in Boston).

After a few more minutes, we got this from Sam, who was at work (he's a clerk for a judge in New Orleans).

Then, we heard from Mama Abbie, who sent this happy shot of Clara.

It was a quick, fun chain of text messages that brought our family close together - even if only virtually.

max writes about a day at the soup kitchen

Volunteers at Haley House

Most of my readers know that my son Max lives in and works at a soup kitchen in Boston. I'd like to devote today's post to something he wrote recently about a day at Haley House:

"Breakfast at the soup kitchen this morning was like any other morning. We cracked the doors open at 5:30 am and were greeted by a dozen hungry guys who had either spent the night outside or had been anxious to leave the overnight shelter as early as possible. The men sat down to chat with each other or read the paper and sip some freshly brewed coffee. Meanwhile, folks in the kitchen got right to work cutting up vegetables and scrambling eggs. Breakfast in the soup kitchen always started like this.

Volunteers in the soup kitchen find out about Haley House from a variety of sources. Google ‘Soup Kitchen in Boston’ and we’re the first result. Some of our volunteers are neighbors who believe in the mission of Haley House. Others are college students who need to satisfy community service hours or just want to do something to help other people. There’s another group that comes to Haley House not because they want to volunteer, but because they’re hungry.

The actual kitchen at Haley House is separated from the dining room only by a small table on wheels. There’s no real separation between the two areas, which means anyone can freely cross what would ordinarily be an imposed barrier in any other soup kitchen. The easy access to the kitchen occasionally beckons one of the guests to come back and help out. After all, what better way to show one’s appreciation for the meal than to assist with food preparation or clean some dishes? No experience necessary –all you need is a hairnet and a quick trip to the hand washing station.

One of the volunteers today used to have a reputation for being irritable and unfriendly. That was before he started volunteering a few weeks ago. He was a guest in the soup kitchen for years before that. I wasn’t sure what changed or when, but I admired his hard work in the kitchen and appreciated the positive attitude he brought with him this morning. On his way out the door, we slapped hands and I told him thanks for his hard work. He responded, ‘no problem,’ and told me that volunteering has been an important and positive thing for him recently.

I didn’t know much about this guy or what circumstances led him to be homeless. Unprovoked by me, he started telling me about his heroin problem. He explained that using heroin all day will make someone sick to their stomach, exhausted, and irritable the next day — unless another fix could be procured early in the morning. But his dealer didn’t start selling until noon or later, so he was left sitting in the back of the soup kitchen to cope with ‘the kick.’

He told me about his recent decision to check into the methadone clinic, despite the harsh judgment of other users who looked down on people who went to the clinic. He was sick of being sick, and methadone could help keep the kick away. And besides, unlike heroin, methadone would help keep him out of jail where he’d get the kick anyways.

He told me that he felt welcomed by the other volunteers in the kitchen. They treated him with dignity and respect that he didn’t get on the street. For that reason, he wanted people to call him by his real name, not his street nickname that he associates with heroin users and other people who exert a negative influence on him. He wants to keep coming to volunteer because it makes him feel important. I think he’ll probably be working with us for a long time.

I know other homeless guys who also feel dignified and important when they volunteer in the soup kitchen. Hearing about this guy’s story today reaffirmed the significance of their role in the kitchen. That’s why I’m glad that breakfast at the soup kitchen this morning was like any other morning –fulfilling for people on both sides of the serving counter, regardless of how they came to Haley House."

max

Please indulge me while I talk about my son.

Max made a commitment to helping others when he moved into a Boston soup kitchen nearly two years ago. He also made a commitment to getting into medical school.

The latter meant enrolling (post baccalaureate) in hard science classes and doing well in them.  This meant studying really, really hard for the first time in his life.

This also meant putting in lots of hours volunteering at Brigham and Women’s Hospital. It meant finding doctors to shadow. It meant getting an internship with a medically related organization. It meant giving up partying for books. It meant driving himself harder than he’d ever done before. Then, it meant preparing for the MCATs, which he chose to do on his own. This meant studying eight hours a day five days a week for four months. This meant focusing purely on expanding his depth and breadth of knowledge. This meant looking deep inside himself to figure out if he was cut out for this kind of discipline. This meant coming to understand what was driving him and why. This meant searching every corner of his head and his heart. This meant looking at himself more squarely in the eye than ever before. This meant getting to know himself in a way he had never before experienced.

Max took the MCAT a month ago and was devastated afterward. He could not believe the difference between the actual test and all the practice tests he had taken during his rigid study regimen. It was much harder, and he said he had been tempted to delete the test in the end and try again in a few months. It was painful to hear him say he had done poorly. He had worked so hard.

It would be 30 days before he got his results, but he began to mentally prepare himself for the worst.

He got a tweet this afternoon announcing that his score was in. He went to a park near the soup kitchen and curled up in a quiet grassy corner to take a look.

And then he picked up his phone to call his parents. Through tears of joy and relief, he told us how he fared.

His hard work paid off. Max did it! He got a score that was even better than the one he had only dared to dream of.

I am so proud of this kid. He’s not been accepted to any medical school yet, and he still faces a lengthy and trying process to get in and then complete his medical training. But I could hear in his voice today that he’s now a physician in the making. 

What an inspiration he is to me.

a mom's musings

Max and friends in Boston

As a mom, I've had my share of worries about - and for - my kids over these last 32 years. The early worries were things I felt I could do something about. "Take my hand when we walk across the street, please." "Don't talk to strangers." "Don't climb that high!!"

As they got older, I felt less in control, but I felt I still had some. They drove. They were passengers in cars being driven by other teenagers. They stayed out late. They were exposed to drugs and alcohol and lots of questionable behaviors. My pleas made me feel better, but my kids were busy doing their adolescent job of breaking out and establishing their own identities. "You have a curfew for a reason." "Just call me if you can't drive home; I won't ask any questions." "Don't even think about that idea for spring break!"

Neither of my children live in Kansas City now. Like any other mom would, though, I continue to worry about - and for - them. Sometimes, not often, I express my concerns and fears, but I feel both of them have grown up to be good decision-makers. So the "loss of control" over them feels OK.

Today I sit at home worrying about my son in a way I have never worried about him before. He lives in Boston.

At this moment I have absolutely no control. None. I feel fairly useless as Max's mom today.

I know he'll be fine. But, trust me, my nerves are frayed. How I wish I could simply say: "That boy in the white cap is not nice. Just don't pay any attention to him, and he'll leave you alone and go away."

my father and my son

socks and years

Have you ever thought about how many socks you've lost over the years? You know, the ones that never show up with their mate when it's time to fold the laundry? There must be a huge pile of missing socks lurking about somewhere, all striped and polka dotted, hushing and hiding and being giddy every time we go to the store to purchase new pairs.

Years are kind of like socks, I guess. They have a knack for disappearing and causing us to scratch our heads and ask "Where did all those years go?"

I got to ring in 2013 with my 24-year-old son, Max. He and I played Scrabble. We found this old score sheet in the box. The years between that game long ago and the game last night: where are they?

In the lines on our faces. In the knowledge we have acquired. In the friends we have made. In the places we have traveled. In the friends and family we have lost. In the family we have gained. In the books we have read. In the lessons we have learned. In the things we have made. In the music we have heard. In the people we have loved. In the set-backs we have suffered. In the successes we have celebrated. In the laughter we have shared.

The socks eventually need replacing. The years, not so much. They're still there if you look hard enough.

Happy New Year to all.

birthday boy

I post about a lot of kids on the blog. Most of them live in Uganda or go to Operation Breakthrough here in Kansas City. Many are kids I photograph in the studio, clients if you will. And of course, there are always pics of my beloved grandson Henry.

A couple kids I have not talked about lately are the ones I gave birth to at Research Hospital many moons ago. Today my baby turns 24, and I'd like to dedicate today's post to him.

He came into the world past his due date. His big sister, Abbie (who'll get her own post on her birthday in nine days) wrote this message on my tummy asking him to come out already. After he was born, we named him Jeffrey. When he was five, he changed his name to Max, and the name stuck. When he turned 18, he changed it legally. So, when I think of him as a baby and toddler, he's Jeffrey. When I recall him post kindergarten, he's Max.

Whenever I think about him, though, he's wonderful.

Max hasn't lived at home since he left for USC as a college freshman. He's now in Boston, where he lives and works at a soup kitchen, takes post-baccalaureate classes, works for a mobile medical clinic and volunteers in the emergency room at a hospital. He manages to find time to call or text fairly often, so we definitely keep up with one another. I smile whenever I hear his voice. He's a really good guy.

He was interested in so many things as a kid: trains and legos, music (he started playing drums in first grade), then horses, then computers, then cars, then philosophy and neuroscience, and now medicine. He plans to spend the next few months studying for the MCATS. (Fingers crossed, everyone!!) But whatever he's been into, he's always been a mensch. In fact, I'm pretty sure the last time I looked up the word in the dictionary, there was a big picture of him included right there on the page.

Max and I have lots of fun with each other. Of course, we've also experienced sadness together. One of the most meaningful times we've had was when he came to Uganda with me. I saw him there in a way I'd never seen him before.

He is a very devoted son, and he is also a very dear friend to others. He values his relationships and nurtures them with loyalty and compassion. 

I am most proud of the fact that as a young adult, he has become a true humanitarian. Happy Birthday to one of the best. (I think you can tell I'm pretty crazy about him.) May you have many, many more happy and healthy ones, Max Moses.

haley house

I've spent the past two days making photos for Haley House. My son, Max, is one of five live-in residents here. He helps run the soup kitchen. He also helps with the clothing room and the food pantry. He works on the website. He even teaches a cooking class to at-risk high school kids. He's forging wonderful relationships with like minded good souls - people who have so much to learn from him and so much yet to teach him.

This is the philosophy of Haley House:


A revolution of the heart.

We believe in addressing problems at their very root. Using food as a vehicle we help alleviate suffering, build new skills and bring communities together. When people eat, work, and share stories, the barriers built by economic and educational disparities are broken down. Through these heart-connections we hope to create a genuinely peaceful society.

We believe in the possibility of transformation through personal relationships; where the advantaged and the most disadvantaged will be valued equally - while we honor the intrinsic goodness at the heart of every person.

We are open. We support spiritual exploration and do not discriminate against different practices. It is the power of various practices that transform people's lives and in the end, our world.

We are transparent. We listen deeply and collaborate before making decisions. This brings forth the best thinking from diverse points of view and experience.

This documentary, made in 2008 by Alexandra Pinschmidt, will give you a good idea as to the scope of what Haley House believes and the tremendous amount of good that Haley House accomplishes.





Here are some of my photos of guests who come to Haley House.

I made these photographs in the apartments of some of those guests who are now living in affordable housing thanks to Haley House.

Here are the residents: Mary Ashton, Albert, Tomas, John and Max (taken when they were on a retreat in New Hampshire several months ago).

And finally, here are Max and me standing in front of the soup kitchen.