by B. Robert Meyer
Juan Martinez (this is a pseudonym) is hard to look at. When he sits in our waiting room before coming into my office the other patients and their family members all notice him. Some try not to stare, but inevitably sneak peeks out of the side of their vision. Others look away because he is indeed very hard to look at. Mr. Martinez has grown accustomed to this reaction, and he has learned to ignore them. He also has learned to dress in a way that limits his exposure. He wears a stocking cap sometimes even in the summer. It covers his scarred skull, from which occasional strands of straight black hair poke upward. It at least partially covers the holes that serve as ears, surrounded as they are by some feeble attempts at external ear tissue. Long sleeves cover the scars on his arms and the areas of heaped up keloid tissue that restrict their motion. His hands are really best described as “mittens”, with scars connecting the fingers and with only a few minimal stubs for fingers. One side has but two (a stiff thumb and index finger). The other really stops at the palm. The arms and hands are not flexible and are not really able to grasp or hold most objects. A knife or a fork would be hard. A large and square object like a box, yes he could hold that. But he cannot wear gloves to hide the hands because every time anything brushes up against his hand he has a paroxysm of pain that can shoot up into his arm. (Have you ever hit your funny bone and felt that pain in your arm?) Mr. Martinez gets that often in his hands.
But he cannot cover his face. And that is what people notice. He has lost his eyebrows on both sides, and has no discernible eyelashes except for three isolated lashes that poke out from a lump of skin tissue that serves as his upper eye lid on one side. The rest of his face is scarred. Most of his nose is gone, replaced by a flat and minimally protuberant organ with two holes. He has heaped up scar tissue on both sides of the face. The scar tissue runs down into the neck under the jaw to the top of the rib cage. It is lumpy, gnarled, and has periodic areas where hair follicles protrude and where there is occasionally some drainage. Were you to see his neck and chest you would see that he has a scar where he had a tracheostomy and the same twisted, discolored, and heaped up scar tissue on his neck that includes much of his chest. When he walks, he walks stiffly because he cannot swing his arms as much as a normal person, and because he has some limitations in his legs from scarring there as well.
Once he is in the exam room and you speak with him, the bad visuals go away and you begin to like him. He has a soft voice. It is easy to hear and understand. And he is very articulate. He is almost always accompanied by his wife. She works evenings as an office cleaner and can usually find the time during the day to come with him. She is a solid, smiling presence at his side. She lets him talk, listens to what he has to say, and offers her own insights when appropriate. They look at each other with love in their eyes. Occasionally he is accompanied by one of his two daughters. They are beautiful young women in their late teens or early twenties I would guess. They too, look at their dad with unfettered love and adoration.
You see, their dad is a hero. He has been thru 8 months of continuous hospitalization (4.5 months in the ICU and 3.5 months or so after that on a regular medical floor or rehab unit) The ICU months were in our burn unit on a respirator for most of that time. There were daily dressing changes. Have you ever poured water on a cut and felt the burning pain? Try to take a bath in a tub in which that cut covers all of your head, neck, shoulders, arms, hands, and part of your chest….And do that every single day for months at a stretch. Try doing that with a tube in your throat, or with a breathing tube in a tracheostomy on your neck, where the lining of your airway is on fire with every breath. And then throw in perhaps two dozen or more surgical procedures to get rid of damaged skin, to try to maintain some structure for the ear or the nose, or the lids and the lips.
But that does not make their dad a hero. What made him a hero is also not the headline in the paper declaring him one. What makes him a hero is that while he was working as a night doorman in a fancy building on the east side, he smelled smoke. He called the fire department, and then he ran into the building to save the tenants. He ran down the hallways, banging on doors, leading the tenants down the stairs, inhaling the smoke, holding open the hot door handles, helping people to escape. And he did this so well that all of them got out safely and with only modest injuries. When the Fire Department arrived he was the person most seriously injured. The F.D.N.Y. put out his flaming clothes and hair, gave him oxygen, and took him to our burn unit for care.
That was years ago now. When I meet him for the first time he has been out of the hospital for a year and a half. Now, going on 3 years since the fire, life has changed. He is at home. He can manage by himself at home when his wife is at work. She sets out his medicine and makes sure that there is something to eat before she leaves for work. His daughters are still in the home and when they are not at school (they are both in college) they help him as much as he needs. He gets some disability payments since he can no longer work. Between his wife’s work cleaning offices at night and the disability they manage to make ends meet, but just barely. There is nothing to spare. But they have a roof over their heads and the family is managing.
He has three major concerns that we usually discuss during his visits:
The first concern is controlling his pain. He does not want narcotics for the pain, fearful that he will become a drug addict and start mugging people on the street for money to buy heroin. I tell him not to worry about this. Aside from the fact that he would be the ugliest drug addict in the world, I tell him, he would also be completely incapable of pulling off a mugging or a hold up. He smiles. But more importantly, I tell him we can try other medications and we can keep the narcotics available to him to use for those times when the pain is acutely bad and unbearable. I am not opposed to giving him narcotics, provided we have some guidelines about when and how to use them. I trust this man to follow the rules we set. We tinker, adjust, and try to provide him with some relief. We never really get rid of the pain. But we do, I think, manage to make it tolerable and he can manage to find a way to live his life with the pain.
His second concern relates to the burns….He has these areas of heaped up scar tissue on the face and neck. These areas were once the source of facial hair and sweat glands. Periodically, one of these scarred glands decides to try to do what it was originally designed to do. It tries to grow a hair or produce some sweat. But the gland (wherever it might have been originally) is now often deeply buried in the heavily scarred surface of his face and neck. The hair or the sweat struggles to get out. In that case he will suddenly develop what looks like a boil or an abscess. And then it swells, becomes tender, and eventually drains to the surface. We do our best to handle each of these events as they happen. That means gentle soaks, some antibiotics if they are warm or particularly red (that is hard to see in his case) and eventually they calm down and resolve, or recede into the scar tissue. Often, it seems, this is only a temporary victory. They shall return.
His third concern is one we are actually glad to be able to talk about. He has not been home to his native country since the fire. He has not seen his parents, brothers, sisters, aunts and uncles since this happened. He is finally physically strong enough to be able to think about the trip….The air trip, the travel from the airport once there, feeling well enough to stay with his family, now all of this seems (finally) now approaching 5 years since the fire, to be manageable to him. He would like to go home to see them again and visit…..But he is frightened about what they will see….He has tried to tell them what has happened. He has even sent a few pictures. But he knows that they will be shocked by the new reality before them. Will they see him inside this new exterior?. Will they act like the people in the waiting room?
I tell him, “They will see a victorious hero coming home with his beautiful family and will be proud. Perhaps they will have a fiesta to celebrate your visit.”
He smiles, but does not quite believe this.
Do you know? He says one day. “No one from the building has ever thanked me. No one ever came to the hospital when I was sick, and no one called my wife or asked how I was doing.”
Bob Meyer is a retired primary care physician and medical educator. He has been a member of LP2 since the fall of 2023.