The Moonlight Sonata at the Mayo Clinic

by Nora Gallagher

  Sarcoidosis was discovered and named in 1899, when the Norwegian dermatologist Caesar Boeck found skin nodules characterized by “compact, sharply defined foci of epithelioid cells with large pale nuclei and also a few giant cells.” Thinking this resembled sarcoma, he called the condition “multiple benign sarcoid of the skin.”

  Sarcoid’s marker is microscopic clumps of inflammatory cells, granulomas (found in my lymph nodes), that clump together and leave deep, grainy scars. Think of them, one specialist said, as a football huddle around the elusive cause.

  Sarcoid can affect almost any organ in the body. “An enigmatic multisystem disease,” said The New England Journal of Medicine. When too many of these clumps form in an organ, they can virtually destroy it.

  Among autoimmune disorders, it is considered rare, but some specialists think it’s far more common than the medical world imagines because it often has no symptoms. One doctor told me that if he took cuts across my body every millimeter, he would find granulomas in every organ.

  Researchers think that something in the environment may cause sarcoid. It may be bacteria. Pine smoke or pine resin was a suspect: hence the doctors’ interest in the fire I was lighting when I first saw the blur. Mold. Whatever the cause, it is found all over the world, everywhere and in every place.

  Those of us who have sarcoid continue to fight its cause with our immune systems, a ghost in our bodies. I, obviously, because of my mother, have a genetic predisposition to it.

  Sarcoid can kill. The lungs stiffen, the heart is scarred, the kidneys fail. The entries on sarcoid support group sites are full of pain and sorrow: sarcoid in the throat, in the esophagus, in the lungs. His breathing gets harder and harder, one man wrote, “Please help me keep the will to live.”

  Because the disease affects so many different parts of the body, a patient can end up with lots of doctors. I have, as of this writing, seven. All of us have a lung specialist, as sarcoid always affects the lungs. It often affects the eyes and kidneys. I am lucky to have such excellent medical insurance, to be able to travel to find the right doctor. To have had the support of my local doctors to persist. (One of my doctors, searching for just the right word to describe me, said, “Oh, Ms. Gallagher, you have been—you have been—a most thorough patient!” I burst out laughing.)

  Having a diagnosis changed everything. The long loop in which I had spent my nights—What could I have? Am I on the wrong drugs? What if I have something that requires other drugs? And what if I have lung cancer? What if it was cancer all along that caused this?—that loop was gone.

  It changed my doctors’ attitudes. I found them to be more focused and, I saw later, less anxious. They knew what they were dealing with. It had a name.

  When I was a child, a friend and I played a game: Fortunately and Unfortunately.

  “Fortunately,” Fred would say, “Pete escaped the shark by climbing into a boat. Unfortunately, the boat had a hole in it.”

  “Fortunately,” I would reply, “a man plugged it up. Unfortunately, the shark bit another hole in the boat.”

  Fortunately, I had a diagnosis. Unfortunately, very few doctors know very much about sarcoidosis, and almost none of them are on the West Coast. It is not uncommon for a definitive diagnosis of sarcoid to take as long as mine did. (In a comic, “Brief History of Sarcoidosis,” posted on a sarcoidosis support site, a fellow patient wrote, “1958: Scientists and doctors from all over the world meet at Brompton Hospital in London for the first ever conference about Sarcoidosis. Since nobody knows anything about the disorder, they shortly retire to brandy and cigars.”)

  My visual field in the right eye fluctuated again last summer; my hearing in the right ear diminished. Dr. Wright, my lung doctor here, urged me to consult Dr. Robert Baughman, a sarcoid specialist in Cincinnati.

  I reminded Dr. Wright that I had been to Mayo. I did not need another specialist. He said, “We still don’t have anyone leading our team. This man has done the most research on sarcoid.”

  Vincent and I had very little expectation when we flew into Cincinnati in early December.

  The clinics were almost empty; the temperature outside just above freezing. We sat in yet another examining room. Dr. Baughman walked in, tall and lean, his dark hair cut in a bowl, like a monk. He introduced himself as Bob. Then he said, “You are my last patient of the day. We can take as long as you want. Please tell me your story.”

  I did. I told him the whole story from beginning to end. He listened. Every now and then he asked a question: “How long have you had uveitis? Did they do an MRI when you were first diagnosed?”

  He looked at my tests and scans, and finally he smiled and said, “I think that indeed you do have sarcoidosis,” with a brief, wry nod to how long it had taken, how far we had traveled. He suggested that I gradually switch from methotrexate and prednisone to Remicade, an “anti-TNF inhibitor,” borrowed from oncology, to tamp down my immune response.

  “It’s because,” he said, “I am pretty sure that you have neuro-sarcoid.” And after that I have very little memory of what he said because my mind went back almost two years, to Dr. J. The examining room, the snap in his voice: You are looking things up on the Internet. I had stopped researching neuro-sarcoid after that. I had lost faith in myself.

  “I am aggressive about sarcoid,” Dr. Baughman said, in his modest office in the late afternoon. “Some doctors are not. I think it’s important to use serious drugs against neuro-sarcoid because of the scars the granulomas can leave. Scarring,” he said carefully, “can’t be fixed.” He hesitated. “I would like to make sure that that nerve remains the same or improves. I am an optimist. I think it can improve.” He watched me carefully.

  On a Web site he showed me a memory test he wanted me to take, and on the BBC Web site a reaction time test involving sheep crossing a meadow, which he almost failed. (“I always get a bad score,” he said calmly.) After two and half hours, he said, “I imagine you are tired.”

  “I am,” I said. “And I am grateful.”

  I took a second to gather my courage and then said, “How do I follow up with you? Is there a chance I might be your patient?”

  He fiddled in his jacket pocket and pulled out a business card. “I will send a report to your doctors in California. I would like to see you again in six months. My e-mail is here,” he pointed to it. “I will always answer you within twenty-four hours.”

  He walked us out through the empty corridors until we were oriented, then shook our hands.

  “Don’t forget to see the Turners at the Taft Museum,” he said in parting. “They’re very nice.”

  We walked back to our hotel, a few blocks away, in the cold and the fading light. Vincent said he was going to the bar, and I said I was going to the gym. I worked out slowly, letting my body move and flex.

  A young woman who had all the abs and biceps you would ever need came in and grinned. “You look happy,” she said.

  “I am,” I said. “I am in good hands.”

  Dr. Baughman’s attitude and skill and open heart made me more forgiving of the other doctors, even Dr. J. I was in good hands, and so I could afford to be generous. I thought about what doctors were up against: they had one foot in Oz and one in the land of the well, they made a constant effort to get it right, and they paid a price for getting it wrong.

  I am and I am not who I was. I have lost part of my vision, part of my hearing, and part of my faith.

  When I shop in grocery stores with their narrow aisles, fast-moving mothers and children and carts, I am almost always surprised by someone coming up on the right. I can neither see nor hear them. That chunk of periphery I took for granted that announces a body somewhere on the edge of things is gone. That piece of auditory nerve that picks up the sound of a footfall or the creak of a cart in the distance? That too is gone.

  These deaths, if you will, announce the ones sure to come, the diminution of my sentries: hearing, sight.

  I would give quite a lot to have my “old”
body back, the one that hefted suitcases and traveled here and there and was oblivious. I would give quite a lot not to have to think about drugs and side effects and what happens when you “tamp” down the immune system and open yourself up to shingles, TB, pneumonia, lymphoma, and melanoma. I would give a lot not to spend so much of my time in doctors’ offices, not to read old National Geographics, not to know the names of the receptionists and how the bad divorce is going and how the taxi driver in Los Angeles wishes to see his family in Armenia more often.

  “Please bring all of your records,” Dr. Baughman’s office had told me. “But we understand that you are a prepared patient.” I would rather not be “a prepared patient.” I would rather not have to track down the latest MRI, the latest CT scan, the blood work, the X-ray, the list of medicines. I know now to keep that list on my body at all times so that I don’t have to write down all of them, including “over the counter,” once again, on the form that no one, except the Mayo Clinic and Dr. Baughman, seems to read. I know now to ask for a copy of one doctor’s report to another and read it through because it will always contain at least one error, which I will then have to correct.

  I would rather not know that the mail order pharmacy must be checked for injectable methotrexate, because it is likely that they don’t have it, and therefore my local pharmacist, who always has it, will have to receive from my medical insurance a “one-time override.” I would rather not know how to inject methotrexate.

  But the new drugs are effective. I am glad to live at a time when they are available. And this is what is real now.

  Some months ago I was sitting on a staircase outside my retinologist’s office because his waiting room had so many patients in it, there was no place to sit. A tall woman with dark hair joined me there, and after a while we traded stories. I was no longer aloof from other patients, no longer pretending this was a way station. She told me finally about the effort it took to hide her increasing blindness from her employer and colleagues so she could keep her job.

  My own “challenges” are nothing, of course, compared to hers and to others’: shunts for chemotherapy, bone marrow transplants, isolation wards, joint pain from lupus, gradual disintegration caused by MS. The slow deterioration from age.

  We pretend to ourselves that it won’t happen to us. About suffering, they were never wrong … I won’t get sick; I will not die. William Saroyan is quoted as saying on his deathbed: “Everybody has got to die, but I have always believed there would be an exception in my case.” I saw an old woman crossing the street, and what traveled through my mind was, My skin won’t sag that much, my knees will not buckle.

  When Jodie looked up at me, her hands full of Frank’s ashes, I looked away.

  And so we sit here: the woman hiding her blindness, the child in the wheelchair at the Mayo Clinic, Jodie in her bedroom that day, and me—on one side of the glass wall.

  What I want from the church, or any faith community, I see now, is a look between human beings that says we are knitted together, standing in a circle, holding each other up, waiting for the next ax to fall, rather than persons following a crowned Jesus, believing in an oppressive creed and tinny, false hope. That “religion” is about wanting the thing to last forever and make the pain go away. The reality is, instead, more about Jesus kneeling in the dust making a paste of spit and dirt. The reality is much more raw.

  He lived in the country of the sick and forsaken. He left a map of it, his own derrotero. (This smaller, individual map, we forget, is the basis of the larger one.) Jesus knew the streets and the houses. The way it feels to be afraid, hurt, unattended, ignored, tortured. To be vulnerable. Jesus took this information back to the order at the heart of the universe.

  It is a kind of desecration that we made of this man, a crown, a king, a Lord. Jesus is about as far away from a king as a person can be.

  And if we are to take Jesus as an indication of what god’s nature is like—not because Jesus is god’s only son, but because Jesus seemed to have committed himself to following out to the end what he thought god was—god ends up here with the sick and the dying, too. A voluntary citizen of Oz.

  And where, you may very well ask, does that get us? I seem not to be able to answer the question. It appears to be in the nature of this particular god to have been the opposite of the God as King celebrated in Christian churches. God is not the Father Almighty.

  That’s the faith I lost. I lost a faith I had been about to lose for years, a faith based on an empire’s pleasure and not on a young man’s compassion. I lost what faith I had in the map based on conquest and not on discovery.

  When I looked at the girl at Mayo and she looked back, I had the uncanny sense that there was a third person there. He was there because she was there. And I was there. We were willing to be there, together, on the road, just that, nothing more. A very fragile line connected us, as fragile as the water in the creek. The life in her smile helped get me through my recovery. We were parts of the order at the heart of things. And so whoever this man was, who lived and died and then lived again, was there, too. Jesus, as Mark Benson said of his partner, Philip, is no longer literal, not here, not visible, but not absent, not without influence, not dead.

  The resurrection, when looked at this way, is not a magic act but the revelation of what stays alive and what dies. Vulnerability and its close cousin, love, stay alive. The rest? Clanging cymbals. Sounding brass.

  And in the end, as you know, so you are known. In the end, you will be greeted as a friend and not a stranger.

  Jesus was on his way to Jerusalem when he came across the blind man sitting in the road. He took him by the hand and walked with him out of the village. There he mixed together dust and dirt. He placed this paste over the sightless eyes. Here is what we might do for each other, those of us in Oz, those outside it. He knelt in the dust not to “fix” the blindness but to be there inside the suffering. This doesn’t mean entering into the suffering for suffering’s sake (the mistake made by hair shirts and kneeling on cold stone), or a boundaryless, oozy sharing, but instead a way to hold it, to sit with it, to accept our mutual vulnerability. Not to solve it. Not to give advice.

  Jodie once described this by cupping her hands together as if she were holding a tiny bird. To be willing to feel what comes our way from the distant and very close land of pain. The terror, the pain, the catastrophe that is no one’s fault. This gesture of acceptance is the most helpful thing because it recognizes the person suffering not as a stranger but as a friend, a fellow sufferer. Because, of course, you will be next.

  One spring day in New York, in my former life, I came out of the subway on the same street as I usually did to get to MOMA, and rather than cross the street and turn left, I turned right, away from the museum, and toward Fifth Avenue. On the avenue I turned right again, to walk south. Just ahead of me, on the corner of East 50th, was a huge Gothic church. St. Patrick’s Cathedral, star of movies and song, and never without people. Never without someone praying or lighting a candle or just walking around, a feeling inside its stone walls of being at the heart of something old, and you could use all the words that people mouth when trying to pass a political correctness test—diverse, multigenerational, color-blind—and not get at what I felt every time I walked in, which was Wow, the whole city is here.

  St. Patrick’s had a very long line of people waiting along one side. I counted at least three hundred bodies. At the head of the line was a sign: ashes. I passed them and made my way a couple of blocks east to St. Bartholomew’s Episcopal Church, where the noon service for Ash Wednesday had just begun.

  When I entered the huge bronze doors to St. Bart’s, far up the long, long aisle, I could see a young blond priest. She said, “Almighty God, you have created us out of the dust of the earth …”

  Under the huge Byzantine dome of the church, the dark suits of midtown Manhattan, accountants and lawyers and Merrill Lynch brokers—hundreds of men and women—were kneeling. I crept up the aisle and knelt
down with the rest of them.

  Next in the service was the imposition of ashes, and I joined the others, walked up to the altar, and waited. A priest told me I was dust and to dust I would return and placed black soot on my forehead. Once it was done, I walked back to the pew, as I have done many times in my life on Ash Wednesdays past, and sat down. The rest of the service commenced: we considered our sins, which, in the new prayer book of the Episcopal Church, include things like “waste and pollution of creation,” and “prejudice and contempt toward those who differ from us,” and “our intemperate love of worldly goods and comforts and our dishonesty in daily life and work.” We took a brief and austere communion. Then we got up and walked back out toward the world. Only then, and only because I looked around at my fellow sinners, did it occur to me that we all had black marks on our foreheads. And then, that we were all in a city where you did not, most of the time, enjoy the anonymity of a car. Always before, on Ash Wednesday, with that unmistakable mark on my face, I’d slunk quickly back to the car and driven home. I’m a writer, I work at home, so the decision about whether to remove the smudge is a pretty low-level one.

  But I was in New York, my face on public display. Damn, I thought. Was this the time to take a taxi? I couldn’t tell if anyone else cared at all. Then what came to my mind very clearly was the memory of a man I had passed on the sidewalk the day before. He was selling scarves and socks and batteries—those things for sale in sidewalk stands all over New York—but at that moment he was not selling; he was on his knees on a little piece of carpet, crammed into a little spot near his table, right up against the legs, his left foot nearly in the street. As I slowed down, he folded himself over and placed his forehead on the concrete, facing east, toward Mecca. He was praying. He was praying in New York. And I too am praying, I thought, as I walked out into the cool spring air, where the pink tulips were budding on the dividers on Park Avenue. I too was praying in New York. I was praying to end my waste and pollution, my prejudice and contempt, my intemperate love of comfort and worldly goods.