Waiting Room

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before we go into the OT but after we change into scrubs, we sit around and read

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Mukesh

In the beginning all the boys came to piano lessons together. Then Mukesh came separately. Now he does not come at all. There is drama among the boys; something so much deeper than I can comprehend is boiling inside of each other them, sometimes escalating in loud explosions or else quiet torrents of tears. Today in the ulcer ward Mukesh began to cry when I spoke to him about piano through a translator. Silently tears welled in his eyes, rolling down his cheeks. He wouldn’t look at me. He wiped his eyes with his arm and sat sullenly on the nursing station counter. 

Mukesh has been avoiding me for days now, insisting each time I track him down that he is not fit for piano. He thinks he cannot play. He tells me “Awdesh and Pankaji yes, me no”.  I tell him how well he plays and he holds up his bandages and casts and says “Nahee” (no).  I point to his head, indicating that he is bright and trying to convey how far a sharp mind alone can take him in music. He doesn’t dispute this gesture, but still remains resolute in his decision to quit piano.

I know that if I can manage to lure him to the piano, as soon as he touches the keys and plays the few bars of Solfeggietto that he already knows, he will lose himself in the music and mental challenge like the previous times. He will eagerly seek more and more of the piece because his mind is so sharp and curious and he compensates for his deformities so resourcefully.

But I worry it is too late. He is mad at me for continuing to teach the boys who tease him, who make him feel broken and incompetent. I am so limited by language that I can’t even explain something simple like: “I still want you as a student. And I don’t care what the other boys say, they don’t know how well you are playing.” I owe it to Mukesh to learn how to speak Hindi. I am really letting them down in this regard.

So I don’t know what the other boys said to Mukesh, but whatever it was, it struck hard. See, Mukesh has a story that sets him apart from the boys here, that sets him apart from all people.

The story goes like this: Mukesh was six years old when his mother died. His father was sent to prison. Around this time Mukesh started showing symptoms of leprosy. At first his older siblings were caring for him, but leprosy is the disease that is always banished and Mukesh soon realized this. He was kicked out of the house. Neglected and left to fend for himself, he began working at a brick factory. The neuropathy in his hands got worse and he could no longer feel the hot bricks in his hands. Scorching his anaesthetic skin and losing fingers from secondary infections, his condition worsened. He showed up at the hospital at age (?) 13 with ulcers covering his arms and legs and his hands swollen with infection, gangrenous from burns, and clawed from nerve impairment. He was depressed and silent. He didn’t know how to interact with people because he grew up without human contact.

He has lived here for about 6 months and in this time the wounds on his body have healed and closed, he has had reconstructive surgery on his hand with semi intact fingers and his other hand is slowly healing from deep ulcers. But whether or not any of the emotional trauma has been resolved, I don’t know. He keeps to himself mostly, has made friends with the old Babus in the ulcer ward, and gets into fights with the other boys here.

Considering his story, I am not surprised that he is having conflicts with the other boys. The other boys can’t possibly understand Mukesh’s life and why he acts the way he does. My hope for him at the piano is that he gains confidence in his mind, which is the clever mind of a little hero survivor, and that he can see how to overcome his disability. He can make music even if his hands are not as beautiful as the other post-op boys.

But what will happen to Mukesh when he is discharged in 5 months? Where will he go and who will he go to? Will he go back to the brick factory that tore off his fingers? Will he take to the streets of Allahabad as a beggar?  Dr. Saw and I talk about Mukesh often: what can we do? How can we help him.  Dr. Saw had the idea of buying him a Rickshaw (only 6000 Rs or $120) so that he can have a livelihood when he is discharged. But I am sceptical: Mukesh is very small having lived malnourished for most of his life and I doubt he would be able to carry passengers on the Rickshaw. I believe Mukesh needs a sponsor. He needs some organization here that can mediate support for him from a sponsor.  I will search for local (and legitimate) NGOs that arrange for orphan kids to get an education, room and board, and regularly see a mentor through sponsorship.  

 

Would anybody like to be Mukesh’s sponsor? Or do you know someone who would be interested? Or are the any US organizations that would support him? This is a kid with too much promise. I do not want him ending up on the streets or slipping through the cracks of some shady NGO. 

Piano Part III

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My piano boys (Awdesh, Mukesh, Pankaji, and Krisan) now seek me out in the morning ulcer dressings and afternoon surgical physiotherapy. They cut the line of ulcer ward patients—comprised mostly of old “Babus” who wait quietly and patiently for their dressings—and shout “me, me, me”,  pointing to their ulcers and surgical scars.  They butt in front of the girls in physiotherapy, wielding their post surgical hands in fervent demonstration of the exercises. I know I shouldn’t favour patients, but I always let the boys butt ahead, cleaning and dressing their wounds first and massaging and going through exercises with their hands first because the enthusiasm they bring to the wards of such a devastating disease is uplifting. It fills the otherwise weighty wards with a new kind of energy. A chaotic, boisterous, proud, joyous, innocent, and light energy that I love.  Then throughout the day as I bustle from post to post— screening, ulcer dressing, laboratory, out-patient department (OPD), surgical physiotherapy—they stop me, saying “Didi” and holding up their hands and fingers, now dangling haphazardly with the gauze that had been wrapped so carefully and neatly in the morning.

Piano lessons at the end of the day are the best part. Awdesh, Pankaji, and Krisan flock to the chapel, bouncing off the walls while they wait for their turn at the piano. The other night we were having a really great lesson. Awdesh and Pankaji were sitting together at the piano hashing out the first two bars of the Chopin A minor together (Awdesh left, Pankaji right), when suddenly the chapel doors swung open. We looked up to see the TLM driver and his wife who plays Hindi songs on the piano for morning devotion.  They marched down the aisle to the front of the chapel and the driver told me that his wife wants to learn how to play western music. She wants a lesson now. A bit taken aback, and quite reluctant to interrupt Awdesh’s  and Pankaji’s  lesson, I obliged because I didn’t know how to say “wait” in Hindi and wanted to be respectful. The boys sat on the pew watching as a marital feud began to ensue. She sat at the piano struggling to play the few lines of the Raindrop prelude (also Chopin) I taught her while her husband yelled things over her shoulder. She became increasingly nervous and tense and instead of improving as she repeated the same few bars, she fumbled more and more.  I began to retreat and tried desperately to stay present and gently show her how to play, but the husband wanted to tell her how to do it. He kept calling out when she missed a note or took too long to reach one. Inside my head I was fuming! How dare he do this to her as she tried to learn. It looks much easier than it actually is. Then I had an idea: He would sit at the piano and play as she stood over him watching. It worked. He fumbled and moved clumsily over the keys. She watched and perhaps there was a small smile on her face. Perhaps.

When the feuding couple left the chapel (having resolved to practice and come back on Monday) the boys giggled and told me “them no”—I shouldn’t teach them lessons anymore. Watching adults falter with something at which they were becoming adept pumped them up with interminable pride.

Piano Part II

I told Mr. Reddy, the X-ray specialist and minister about Awdesh and Mukesh. He immediately held meetings with each boy and smoothed things out for them in Hindi. I wish I could speak their language! The next day Awdesh played his Chopin left hand and Mukesh played his Bach in pecking style. Although Awdesh seems perfectly fine, Mukesh is disheartened and I will need more time with him at the piano to understand what’s really going on. These boys are not only teenagers, possibly the most tumultuous part of my life, but they are also orphans of leprosy, meaning each boy was rejected from his family because of his disease. Awdesh is lucky enough to have a kind uncle who will take him in after one more surgery, but Mukesh has nobody. He is a permanent fixture at the hospital.  So this drama that I witnessed between the boys is much more complicated and deeply felt than it can possibly appear.

Yesterday Awdesh invited his friend Pankaji to hear him play in the chapel. I went along with it despite my concern  for the possibility of more piano drama. When Awdesh played, Pankaji was mesmerised. He couldn’t believe his ears or eyes! He motioned to me that he too wants to learn how to play the piano. Suddenly I had an idea – one that i didn’t know how to explain to the boys, so I just started showing. Awdesh can play the left hand part of Chopin A minor Waltz, so without explaining what i was doing, I taught Pankaji to play the right hand part (Pankaji, like Awdesh, has one hand in plaster bandages).  Upon hearing Pankaji play, Awdesh, who had been rummaging around the church looking for trouble sprang to the piano and excitedly pointed at himself, indicating his left hand and at Pankaji’s right hand. He understood. Awdesh had figured out that the melody I was teaching Pankaji fit with the chords Awdesh played with his left hand. I was astounded. How did he know? I gestured for him to explain this to Pankaji. He did and both boys were giddy with excitement. Although we only put two measures together, hearing them play together and seeing the pure joy and thrill of it almost made me fall apart. But I didn’t want to show them how touched I was by this achievement, so I  just conducted them as they repeated these measures over and over again.  We are preparing for a little performance the boys will give for the hospital community. I think it two or three weeks they will be ready to play the whole piece together.

But Mukesh has not been showing up at the chapel to play. When I saw him in the busy main floor of the hospital he would not reply to my greeting. I wonder if the other boys are boasting about their accomplishment, something that Mukesh is physically unable to reach. He is confined to staccato pieces because he can only use his half index and half thumb on the right hand and tip of his index poking out of the cast on his left. I am confident that Mukesh will be able to play the Bach though, so I need to make sure he comes to the piano today.

Criminal (in)Justice

The police escorts waited outside the OT as he was wheeled in on a stretcher. “What was he in for “ I asked as we transferred him from the stretcher to the operating table.  “Murder”, Dr. Das said flatly. I was at a loss for words.  Time stood still while the room kept moving.

As the surgical assistant painted his right thigh with betadine I looked at his face. He met my gaze and we just looked at each other for a while. Through my head, thoughts were rushing—who was it, did they have family, how did you do it, why, do you feel remorse? But the image of this man as a murderer failed to imprint itself. I could not hold onto that knowledge. As I continued to look at him on the operating table i noticed details about him: how his smile is so reminiscent of a boy who lives in my neighborhood;  how elegant his appearance is with high cheekbones and deep-set eyes; how well defined each of the muscles of his arm is, how healthy  and radiant his complexion appears.  He could easily be mistaken for a high fashion NYC model.

I held his head in restraint and as the first incision was made in his thigh. I just couldn’t look at him through the lens of “murderer”. I wanted to see him only as a human, a patient.  Maybe this is the only room in the world where he can strip the murderer identity, leaving it with the escorts who wait outside, armed and ready to put the cloak of criminal back over his shoulders when he emerges. But for now he is a patient and the surgical team sees him and treats him no different from any other patient who has entered this room.

As the operation commenced, Dr. Das began to share some details about his case. It was tragic. Apparently, his father was murdered when he was 13. To avenge his father’s death he searched for the man responsible and killed him. Although he was just a young boy, he was tried as an adult in court and was sentenced to life in maximum security prison.  He is 27 now. He has lived his teenage years and early 20s inside a cell. And somehow he contracted leprosy and developed claw hand.

It is interesting to note that this patient is undergoing reconstructive surgery to restore his hand to normal function and appearance. You might wonder what is it for? When we release him from the OT he will get a POP cast and a one way ticket back to prison. Why bother fixing his hand functionally and cosmetically?  If he is destined for a life in prison why should he care about how his hand appears or how well it works?  He should care and we should care about this because it is his life. Even if his existence is reduced to the level of prisoner, he is alive, breathing, thinking, imagining, perhaps reading and writing, exercising, navigating prison relationships. His new hand will help him in his life despite the circumstances.

I wish we could change the circumstances. Even if his sentence is reduced from “life” to some number of decades, it would give him hope for a better future, hope to see the world outside.  He will come back to have his cast and stitches removed in three weeks, so maybe I can learn more about his case and see if there is anything I can do or (more likely) network to some professionals who will help him achieve a glimpse of freedom.   There must be some loophole in his case because the courts are guilty of trying a 13 or 14 year old as an adult. I welcome advice but I should say the legal system in India is quite different from the US.

Eyes

Seeing a face on the operating table as it is painted with brown betadine (sterilizing solution) in preparation for surgery is a grisly scene. Our eyes are the emblems of our inner selves—“windows into the soul”. They are features upon which we fixate when we are seeking truth, expressing love, getting to know, saying goodbye, greeting, sizing each other up.  Looking into each other’s eyes when we speak with one another is not merely convention; it is a necessary part of our communication, our respect for each other, and our own dignity. Here on the operating table a patient lay with eyes that would be met by a scalpel, forceps, numerous needles, a surgical scooper, among other sharp sterile instruments. This thought is scary at first, but getting beyond the aversion to poking sharp things into people’s eyes, I was struck by the gift the procedure was about to provide for the blind or nearly blind patient. This patient was getting her vision back.  In 24 hours she would see the world again and in one month her eyes would demonstrate 80% normal vision. These invasive moments in the OT would bring light into her eyes, light into her life.

Cataract surgery involves the replacement of a destroyed lens with an artificial, clear one.  According to the United Kingdom Thesaurus, cataract is synonymous with “waterfall, cascade, force, falls, chute, torrent, flume”. Although I fail to see how the cataract (clouding of the lens) itself is like any of these coursing, watery words, the synonyms accurately describe cataract surgery: The flumes of saline into the eye, the chute of the IV, the waterfall spilling out of the ocular cavity, the force of injected air countering negative pressure, the torrent of instruments bearing down upon the eyeball…

I observed 21 cataract surgeries and one pterygium surgery. After seeing so many, I memorized the procedure: dilate the pupil, pry apart the eye lids, make one stitch through the superior rectus muscle to pull the eye into ideal position and immobilize it. Snip through the conjunctiva,  zap blood vessels with the cautery device, make a  5 mm long incision in the sclera, wash with saline, inject visco (some version of liquid paraffin) remove the anterior capsule, clean with saline, suction, inject visco, insert wedge to make a horizontal and circular incision above the lens, saline, suction, inject visco, scoop cataract lens out with surgical scoop that looks like the enlarged eye of a needle,  flush with saline, inject visco, insert artificial lens with side wings, twist like clock to proper position, flush with saline, inject air to counter negative pressure, wash, constrict the pupil, apply ointment, cover with gauze and shield, done!