The Ministry of Doing the Same Thing Over and Over

The Ministry of Doing the Same Thing Over and Over

(This was published in a recent issue of PlainViews, an online journal about pastoral care.)

Most of my hospice patients have dementia. I visit each patient about twice a month, and pastoral care for them is challenging. With most, there is no conversation, or if there is, it is usually nonsensical. The nonsensical conversations, often funny and entertaining, sometimes give me energy and motivation to continue my work. I love telling those stories to co-workers and friends.

I lead a support group for residents of an assisted living facility who have early dementia. They are not patients of mine but live in a facility where I go often. I usually get 8 or 10, and the truth is they usually have little idea why they are there or who I am. At the beginning of our group recently, some kindergarten children were brought in to give Valentine cards and hugs to the residents. (Apparently, I look like I belong there because I got a card and hug, too.) As the children were settling in and their teacher was getting organized, the woman to my left, who has attended every one of my support groups, asked me who I was and why I was there about 10 times. I answered every time that I was there to lead the support group, and she always said, “That’s good. We need it.” Once she asked if I was the guest speaker. That’s not precisely why I was there, but I said “Yes” anyway. After the cards and hugs were distributed the teacher began reading a children’s book to the children. The reading was also for the entertainment of the facility residents. After the teacher had read a few pages, the woman to my left turned to me and said, “I don’t think you have much competition.”

That type of exchange makes my work fun. On the other hand, there are dementia patients who say nothing entertaining and, often, nothing at all.  They may mumble incoherently, stare blankly into space, or lie motionless and speechless. What does a hospice chaplain do in those cases? Here’s what I do: pretty much the same thing over and over: play music, meditate at the bedside, say a prayer, call a family member of the patient. I also check in with the facility staff to see if there is anything I need to know. This routine, over several months, can get tedious. Plus, I am easily distracted, and my attention tends to wander.

Here is how I try to make these encounters meaningful and, I hope, beneficial. Perhaps my describing these will generate some creative thought of your own.

When I first meet the patient’s family (usually over the phone), I ask if the patient has some favorite music. If the patient is a longtime Christian, I ask if they might enjoy hearing traditional hymns. On my portable music player, I play hymns that feature clear, strong singular voices with minimal background music, which works well with such patients, who are often hard of hearing. I’ll admit that playing music can sometimes be a crutch for a hospice chaplain. It’s a chance to feel like I am doing something while not saying or doing anything myself.

Music, however, can sometimes create a special connection. I had a patient who had almost completely quit speaking or responding to anyone, even his loyal wife, who visited him for several hours every day. Once when I played “I’ll Fly Away,” he opened his eyes and sang the chorus, then went silent again. His wife and I stared at each other in amazement. (Many hospice chaplains have stories like this.) Sometimes I’ll sing along, and a patient will stare intently at me, watching my lips move. I don’t know what that means, but something interesting is happening inside that damaged mind.

Music therapist Kimmo Lehtonen said in a speech, “Many pieces of music act like a transference and they immediately arouse strong memories, emotions and mental pictures from the listeners’ distant childhood or other meaningful moments in a client’s life. This also happens with demented people,

who still have their memories but the process of getting in contact with them is disturbed or difficult. A certain piece of music can remind them of many vital memories of different persons and especially social interaction with meaningful persons.” (Lehtonon, Kimmo (2005) Music as a possibility of chance – healing metaphors in music. [In: Aldridge, D.; Fachner, J. & Erkkilä, J. (eds) Many Faces of Music Therapy-

Proceedings of the 6th European Music Therapy Congress, June 16-20, 2004 Jyväskylä , Finland. p. 532-546. eBook (PDF ) available at MusicTherapyToday.com Vol.6. Issue 4 (November 2005).]

With that role of music in mind, I call upon the Spirit to move in the patient as the sound waves enter. Music can be comforting like voices of loved ones. I am aware that the main comfort that a minimally responsive, dying person receives when family or friends talk to them is probably a vague feeling of familiarity as he or she “hears” a close person’s voice. That familiarity may create a peaceful connection for the dying person and give the loved one nearby a way to engage meaningfully in a situation in which normal conversation is not possible. Music can provide a similar feeling of familiarity. As I meditate at bedside, I pray that the hymns engender peace for the patient—in some mysterious, unknowable way.

One of the many helpful remarks made by my Clinical Pastoral Education supervisor was the notion that I should use my natural curiosity about people to help me make a pastoral connection. He noted that I had been a writer and had utilized my curiosity in that field, so it could carry over into chaplaincy. Indeed, curiosity about what may be going on inside the mind of a dementia patient helps keep me engaged.

I read one theory about people in this stage of life that holds that they are sorting out their whole lives as they appear (to the rest of us) to be staring meaninglessly into space. If this theory is correct, whenever a dementia patient makes some seemingly incoherent remark about a long-dead relative, perhaps they are adjoining in their mind events that happened long ago with future re-connection in the afterlife, as well as with the patient’s current reflective state. I realize that is speculation, but it helps me maintain some sort of pastoral relationship as I sit quietly next to him or her, asking God to guide this person’s final journey. Those moments of deeply felt communing with another give me strength to continue as a chaplain when I feel as if I’m not making much difference, and I trust that those moments are bringing some benefit, perhaps a feeling of peacefulness, to the patient.

Calling family members after a visit is interesting at first. I’m getting to know the patient through their family, and I’m getting to know the family while I try to encourage them. Often, I learn interesting and endearing things about the patient. I frequently find myself thinking, “I wish I had known her 30 years ago.” Eventually, however, the calls become harder to make. I try to think of something new to say, and there usually is very little. In my mind, I make up excuses not to call; I feel a little embarrassed that I can’t think of something to say other than what I have already said. The calls eventually feel repetitive and tedious: “I saw your mom today. I played some hymns, sat at bedside, and said a prayer. I prayed for you and your family.” I realize I am revealing my insecurity by admitting that I feel hesitant to make these calls, but it is a challenge faced by many hospice chaplains. We want to help these families, not just be a prop in the room.

Usually, I do make the call, and even if I leave a repetitive voice mail, I make sure my tone expresses my joy at having sat by the patient. It is easy, without realizing it, to go into autopilot and sound bored and disinterested over the phone. I overcome the tendency to be perfunctory by remembering that this time in the patient’s life is sacred time. At what other time in a person’s life can I sit by their side and simply be a supportive presence with no external distractions? All distractions are my own: my restlessness, my short attention span, my need to feel like I am “doing something.” I remind myself that the music, or the silence, in the room can be a source of comfort for the patient. Doing so enriches my life simply for being there and for being so attentive to the movements (however slight) and sounds (however soft or incoherent) made by the patient.

If I take a moment before each call, breathe slowly, and reflect on the time that I have just spent with the patient, I can give the family member the attention and care that they deserve. The phone call changes from a routine duty to an extension of the pastoral presence I just experienced sitting next to the patient. Even if I leave a voice mail message, which is mostly the case, I can avoid sounding like one machine talking to another by remembering that each visit, even though it may appear to be identical to the last and the one before that, is a unique moment in the family member’s life. For most family of dementia patients, my phone call marks yet another two weeks of suffering through dementia. Waiting for someone to die and living with the guilt of wanting someone to die is emotionally draining, so every added week or month adds to the anxiety. If I keep this progression of the emotional toll on the family member in mind, I can treat even a routine voice mail message as extending pastoral care.

Hospice chaplaincy can be hectic as we drive from facility to home to facility, so I need to pause at certain moments, such as before a phone call to family, to allow myself to fully feel the gratitude I have for being in this work. The repetition can be emotionally stifling and can lead to chaplain burnout, so these moments are beneficial not only to the patients and their families but are also beneficial to me as I keep myself enchanted by hospice chaplaincy.

Occasionally, I reach an actual person on the phone, rather than their voicemail. In all honesty, I must admit that I am sometimes disappointed that someone answers the phone. That is a terrible admission, but chaplains get in a rush, and, as I have said, become self-conscious about leaving repetitive messages. But, sometimes, magic happens. I am delighted when I reach a family member and they say, as is often the case, “Thank you so much for your messages. I really appreciate your visits and your attention to her.” At those moments, I feel deeply the important reason for my returning to these patients over and over. Perhaps by visiting and calling, I am easing the family member’s guilt a little for not being free to visit more often. Whatever the reason, I am pleased to hear that those voicemails, which, on my end of the phone call, can sometimes feel empty and rote, actually come across on the other end as comforting.

These pastoral visits and phone calls to family members, if done consistently and with genuine compassion, prepare me for the patient’s final days and hours. If our nurse perceives that a patient’s death is imminent, he or she is placed on a continuous watch until death, so that pain and symptoms can be controlled. This is my favorite time to visit. At least one family member is usually there, and this is often my first time to visit them in person. By that point, my phone calls have established a pastoral relationship, and I am prepared to provide the subtle comfort that is appropriate for this sacred time. I can say a prayer that reflects the long, painful journey that the family has been through, as well as pray for the patient’s peaceful passing. If it seems appropriate, I gently evoke stories about the patient that lead the family toward healthy grieving. These stories connect their shared past with the reflective present. I can sit by the patient, as I have many times before, perhaps while holding his or her hand. All those repetitive visits lead to a satisfying, healing conclusion.

Music Brain

Jerry Has No Taste: A Stranger Prays for Jerry’s Healing

Jerry Has No Taste: A Stranger Prays for Jerry’s Healing

I stopped at a coffee shop to complete some paperwork and make a few phone calls for work. As usual, I was chatty with the young woman behind the counter. She looked to be in her mid 20s. I found out she is a singer who just moved back in with her parents. She sings mainly at corporate events. I enjoy chatting with cashiers. At grocery stores, if they ask for my phone number to write on my check, I often say, “Are you going to call me later and ask me how the food tasted?” That usually gets a chuckle. When I was younger, I would sometimes say, “OK, here’s my number, but call before 5, or my wife will be home.” That usually got a chuckle or a stare.

Even though I can’t taste coffee much, I buy and drink some so I can use a cafe’s wifi. Muttering to myself, I reviewed the options, then said, “It doesn’t really matter since I can’t taste it anyway.” She looked at me puzzled, so I explained my condition. She expressed sympathy and said the same thing had happened to a former high school teacher of hers. I wished her luck in her singing career and took a seat. After her shift ended, she sat across the room at a table and stared intently at her smart phone and tapped away.

After I finished my work, I paused at her table on my way out to say the usual, “Have a good day.”

She said, “This may be strange to you, but I feel led to pray for your condition. Is that OK?”

At one stage in my life, I would have been very much like she was. I would have cheerily greeted a stranger with an offer of prayer, hoping to perhaps move them in the direction of my faith.

At another stage in my life, I would have been cynical and annoyed.

I said, “Sure, thank you,” and sat down.

She put her hand on mine and began with a familiar phrase, one that took me back to a secure place in my teens: “Father God, we just thank you….” She went on with some remarks about how good God is and said, “And right now, Father God, I ask that you heal—”

She looked up at me and said, “What’s your name?”

“Jerry.”

“We ask that you heal Jerry.” When she prayed for the healing of my taste and smell, she placed her hand on my nose for a few seconds.

After she finished, I thanked her again and told her if my smell and taste are restored, I would come back and tell her.

“That would be great,” she said.

Her prayer was earnest and warm, genuine, hopeful, full of care. It was a prayer that I would have prayed when I was in high school, when the magic of God’s life-determining presence was a believer’s prayer away. I had prayed for good parking places as well as healing of sickness, and most everything in between. I prayed for good grades on tests, for help making decisions, for direction when I got lost driving. Jesus was a friendly, comforting guide, a lifter of the down-hearted, a creator of smiles, an eternal generator of happiness. Nothing, nothing could go wrong with Jesus in my heart. Prayers were part motivational-speaker-uplift, part wizard’s wand.

Later on in life, I went through a hard cynical phase about Christianity, when I would have scoffed at this sweethearted young woman. What’s the point of sincere prayer when so many things don’t work out well? I detected a self-serving attitude in many prayers. I grew weary of the manipulation of charismatic leaders whose prayers seemed designed to boost their own egos and bank accounts. Mostly, though, my cynicism was inward, based on my own experiences, not that of others. I wasn’t prepared for all the reality that hit me. My faith didn’t allow much for failure or pain. So why bother?

When my father had a rough experience as pastor of a Baptist church, I took it hard, as I was planning on being a pastor myself at the time and had a rosy picture of what that would be like. My sweet little world didn’t include turf battles, conflicting egos, power struggles, and deceit. My faith excluded a big chunk of human nature.

By the time I began training to be a health care chaplain at an Atlanta hospital, I was on better terms with Jesus. I had come to accept that Christians and Christian communities can be chock full of contradictions and conflict, and the world won’t fall apart, that making one’s way through pain and sadness can be a spiritual experience. Health care chaplains deal with families and others praying for good outcomes every day, all day. We have a larger pool of prayer/outcomes than most people. One “miraculous” recovery doesn’t shift our universe, as it may for some. For every one of those, there are deaths, amputations, debilitations, and illnesses. The next day, there are more. In one case, I met two mothers of very ill daughters. The mothers met in the ICU waiting room, and both prayed fervently, hopefully, faithfully for healing. One of the two beloved daughters left the hospital healed, accompanied by her deliriously happy mother. The other mother trudged home bereft. At one point, she looked at me and sobbed, “It wasn’t supposed to be this way.”

I still pray often, and when I pray for someone ill, I pray that he or she will recover, but I do not believe in a God who decides which mother goes home happy. Prayer pulls us together in mutual need; it connects us with a loving God and with the spiritual resources to cope with life; but it is not a magic formula that gives us what we want if we practice it in the right way.

As I drove away from the coffee shop, I peeled a banana (yes, while I was driving—sometimes I’m foolish), and you better believe I eyed that banana with hopefulness. I would have been thrilled for that woman’s prayer to have been followed by me once again enjoying the delightfully sweet and mellow taste of a fresh banana. The memory of that flavor rushed into my brain as I peeled it. I would have been happy to report this thrilling news to her, and she would, I’m sure, share this miracle with her faith friends. But the banana, like everything else I ate that day, had no flavor.

The memory of her prayer, her caring tone, her gentle eyes; these go with me. When two strangers meet and bond and show love, now that is a miracle.

PrayerBanana

Jerry Has No Taste: The Neurologist Has Her Say

Jerry Has No Taste: The Neurologist Has Her Say

Personally, the neurologist won me over. I made it from the waiting room to an exam room, where I continued waiting. I began glancing at my watch, a bit irritated, though not surprised that the exam room was another waiting room. Then, she opened the door a bit and apologized. “I’m sorry you’re having to wait,” she said. “Another patient took longer than I thought. But don’t worry. I’ll answer all your questions.” No doctor had ever said that to me before.

Plus, I had this nagging feeling that she looked familiar. I soon realized that we had met on two different occasions, both at the homes of mutual friends. The second time was at a neighbors’ Fourth of July party. She and her lesbian partner wore red, white, and blue costumes that were a big hit. After we recalled our meetings, she even remembered that I had written Grady Baby, a book about Atlanta’s Grady Memorial Hospital.

She led me through a routine neuro exam, including walking down the hall to observe my gait. Apparently, I walk just fine, and everything else about me passed the test. She repeated what the others had said: I don’t know what caused it, can’t fix it, don’t know if you’ll get it back. And: “I’m sorry this happened to you. It sucks.” She added that her father had lost his taste and smell, and they returned after a year or so—which gave me a bit of hope. Finally, she asked, “What am I forgetting?” I couldn’t think of anything, so we got to what to do next. She said there was a tiny chance I had a tumor in my brain, a meningioma, and I could have a brain MRI done to rule that out.

According to mayoclinic.com:

A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. Most meningiomas are noncancerous (benign), though, rarely, a meningioma may be cancerous (malignant). Some meningiomas are classified as atypical, meaning they’re neither benign nor malignant, but rather something in between.

Meningiomas occur most commonly in older women. But a meningioma can occur in males and at any age, including childhood.

If the person who wrote the Wikipedia entry on meningiomas is correct, 8% of them occur in the “olfactory groove” and affect smell and taste.

Once chance in a hundred I would have this, she said. Those are mighty good odds. However, I had beaten those odds before—and not in a good way. Ten years ago I noticed a hard bump in the middle of my bottom lip. It resembled a small wart and was more annoying than painful. For a while, I treated it like a fever blister: get rid of it and assume that’s that. I would snip it off with fingernail clippers. (When I told my dad about that, he said, “That was dumb, you know.” Of course, he was right, but stupidity often doesn’t get in my way.) But it kept coming back. Finally, I had a biopsy done by a doctor who, because I had none of the risk factors for skin cancer (smoking, dipping snuff, working outdoors), said he was confident he would call me in a few days and tell me it was negative. “Nine out of ten times it’s benign,” he said.

A few days later, one of his medical residents called me and said, “The doctor would like to talk to you about your biopsy.”

Uh oh.

“What is it?” I asked.

“He will tell you in his office.”

“Well, what is it?” I didn’t want to wait a few days.

“It is something about the way the cells are dividing.”

OK, he’s not going to tell me, not going to disobey his boss. And maybe I quit pushing him because I didn’t really want to hear right then, over the phone, what was obviously going to be said. I wanted to hear it in person–from a real doctor looking me in the eye.

The good news was that it was—if you have cancer—the kind you want to have: squamous cell carcinoma and “well defined,” which meant it was limited to that small spot on my lip and, once removed, very unlikely to return. After a morning of outpatient surgery, the cancer was gone. Thanks to the numb spot left behind, however, I can’t whistle very well anymore. After five years, there was still no sign of cancer, so I was eligible for life insurance. If I die, my wife can pay off the house and car and take a nice vacation. (She has always wanted to visit Japan.)

The one-out-of-a-hundred, therefore, wasn’t as assuring as it might be otherwise. Still, I wavered having a brain scan, mainly because it would cost $900. Jerry the Cheapskate thought, “Do I want to spend $900 to find out I DON’T have something?” I called a trusted friend who said, “Jerry, you need to find out.”

When I arrived for the MRI, they asked me if I was claustrophobic.  For the life of me, I don’t know why I said “No.” Vanity, I guess, thinking someone my age should have gotten over that long ago. When I was a child, my friends would crawl through the pipe under the road, but I would poke my head in there an inch and freeze, frightened that I would somehow get stuck in the middle. I always backed away.

A few years ago, my family visited Ruby Falls, in Chattanooga, Tennessee, an underground waterfall at the end of a long cave. To get there, you descend 1,120 feet in an elevator to the cave, then walk to the falls. I felt nervous waiting on the elevator to take us down; a man behind us backed out before even getting on it. As the elevator slowly descended, I became more anxious, irrationally fretting that the cave was going to collapse. When we entered the cave, I nervously said I didn’t know if I could go on. The attendant said, “I can send you back up. We do it all the time.” My daughter took my hand and gently said, “You’re going to be OK, Dad.” With that assurance, I proceeded, all the while saying to myself over and over, “This cave has been here millions of years. It is not going to collapse today, just because I’m here.”

In the MRI clinic, I remembered that incident and confidently thought my claustrophobia was in my past. Just before I lay down, I thought about glancing inside the MRI machine to confirm there was an exit on the other side, but didn’t—again, false confidence—and I felt OK until he strapped my head down. Then I panicked. The technician had almost left the room when I said, “Get me out of here!” He backed me out of the machine and unstrapped my head, and I sat up. I told him that I needed to look inside the tunnel and see an opening on the other side. That shouldn’t have mattered because I was not going to exit that way, but it felt reassuring to know I wasn’t going to be trapped in a dead-end cave. However, there was still that strapping down of my head. That was scary. Once I was again strapped in and inside the tunnel, I calmed myself by looking down toward my feet so I could see, through the glass, the technician moving around inside his booth. Seeing a human being in a lab coat operating the machine in a booth (who wasn’t a mad scientist) moving freely somehow reassured me I would be OK.

A few days later, the neurologist called and said everything looked normal. (I do have a “partially empty sella,” but that is, apparently, no big deal.) I was relieved but a part of me wanted my $900 back.

A few weeks later, I was driving along in my car and remembered that I had been snow skiing near Rochester, New York, just before the time I stopped tasting food, and I had fallen and hit my head. It was a strange fall because I was not on a steep slope. In fact, I was on a gentle run on the last leg before I reached the lift at the bottom of the mountain. But I remembered that my skis bumped together and I hit my head pretty hard. I had been surprised that I hit it as hard as I did, considering how slowly I was moving. The docs had told me a head injury could possibly cause this malady, so I called the neurologist’s office and left a message about this incident with her assistant. The doc called me the next day and said, going by my description, that fall was not severe enough to be the cause.

The mystery remained.

For our Holiday party, two days before Christmas, I baked oatmeal raisin cookies that everyone said were delicious. We hired a neighbor to make barbecue pork sandwiches, chicken salad, and collard greens. Everyone said everything was terrific. My pastor said it was the best chicken salad he had ever tasted.

ImageImage

We’re Still Something

We’re Still Something

by Jerry Gentry

 

A niece sat by her old, dying aunt,

who breathed steadily, eyes closed,

having had no food or water in four days,

resting her final days away.

 

On the wall, inside an oval frame, was a picture of the young smiling aunt,

standing next to her new, smiling husband.

The picture evoked from the niece stories funny and dear,

told as she touched her aunt’s bony shoulder.

 

On the small TV, Judge Joe Brown told a man how foolish he had been.

“It only gets that one channel,” the niece said.

“So I’ve seen a lot of judges and Jerry Springer.

It’s not very good, but it’s something.”

 

We don’t have to be good to sit with the dying.

We just need to sit, and feel some love,

perhaps some gratitude, a bit of warming nostalgia.

Even if we’re not all good, we’re still something.Image

Jerry Has No Taste: The Doctors Have A Say

ImageThe physician assistant at the ENT office did not thrill me when she said, after I told her about my loss of taste, “That’s usually a mystery.”

We hadn’t even yet talked about what had happened to me in any detail. She hadn’t asked a single question about it and had already used the word “mystery.”  I wasn’t in the mood for a mystery. I wanted non-fiction.

We had finished talking about the hearing loss in my left ear. It is enough to warrant a hearing aid if I want one but not a significant impairment. Her concern was that my hearing loss was asymmetrical. The hearing loss in my right ear is minimal and normal for a 54-year-old, but the left ear’s hearing loss is more severe, and hearing loss is usually the same for both ears. That imbalance had concerned her, but a test had revealed no tumor, which had been the big worry. She suggested I have my hearing checked regularly and eventually decide about a hearing aid for the left ear. I can live with that.

My loss of taste and smell, on the other hand, called for more investigation. She ordered an MRI of my nasal area, to see what was going on. One possible cause could have been nasal polyps, non-cancerous growths that can block air flow to the olfactory cells, which, I learned, are crucial to smelling and tasting. Having warts in my nose would not normally please me, but I was hoping they would find polyps because they can be removed—which meant SOMETHING COULD BE DONE. But, alas, none were found and everything looked normal.

This became a pattern: No one can find anything wrong with me. The good news is that I’m one of the healthiest 54-year-olds you’ll meet; the bad news is there is nothing they can fix.

“If you can’t smell it, you can’t taste it,” the PA had explained. “Taste is 80% smell.” If you hold your nose while eating chocolate, it’s not nearly the same experience. There is a cluster of cells at the top of the nose that are connected to the olfactory nerve, which sends signals to the brain about smell. Without those smell signals, taste is toast. Bland, uninteresting toast.

Smell and taste often diminish with age, but normally at an age much higher than mine. Loss of taste and smell is a possible side effect of some medications, but I take none. Besides killing you, smoking tobacco can diminish taste, but I never picked up the nasty habit. Loss of smell and taste can also be an early sign of Alzheimer’s disease or Parkinson’s, and I will now go into complete denial that one of those is a possibility. Remind me in 20 years. Sometimes those cells get knocked out of whack by a bad upper respiratory infection, and smell—and, thus, taste—is diminished, or lost. A head injury can also affect taste and smell. I had not had a respiratory infection in a long time or fallen out of a tree, so I am in that other category: We don’t know what caused it. 

I learned from the American Academy of Otolaryngology web site that we have a “chemical sensing system (chemosensation)” that handles taste and smell, and it is more complicated than merely food touching taste buds and taste buds identifying a taste—which is what I had assumed. We have nerve cells in the nose, mouth, and throat, which are stimulated by molecules released by many things: bacon, flowers, gasoline, tar, perfume, wood being sawed, and so on. These cells send messages to the brain, which sorts everything out and tells you what’s going on. Smell is processed through the olfactory cells (the ones clustered in the upper part of your nose). The gustatory (taste) cells are in your tongue and throat. Other nerve endings contribute to the sensation of smell and taste by adding to the context. When you smell smoke, your sensitive eyes may also sting, another “chemosensation.” These different sensations work together to create the complex experience we call “tasting” and “smelling.”

I hadn’t thought as much about my loss of smell as I had about the loss of taste, I guess because eating is more important to me than smelling. Since I am a hospice chaplain and am in nursing homes often, maybe I was enjoying not smelling geriatric urine—and whatever else is mixed with it. Smell, however, is pretty important. One day I was making a turkey sandwich, and as I was about to put the sliced turkey on bread, I thought it felt a little slimy. I tried to smell it, but sensed nothing. I asked my daughter, and she said, “It smells like chlorine.” I threw it away. I hardly notice it when I fart, but my wife and daughter do. Sometimes I am not a popular guy in my house. I’m thinking, “What’s the big deal?” They’re thinking, “Man, this guy stinks.”

At my last appointment at this ENT office, I spoke with the MD for the first time. He showed me some of the MRI pictures and explained how it all looked good. He said I had to wait to see if my taste returned to normal on its own. He said sometimes it never returns; sometimes it partially returns; and sometimes it returns completely. He suggested I take zinc tablets, use Nasonex spray in each nostril, and begin using a saline nasal rinse daily. He said these might encourage the healing, which may or may not take place.

Later, while scouring the internet for information, I found that insufficient zinc could lead to loss of taste and smell, so the zinc tablets made sense. Nasonex is used to treat nasal allergy symptoms, so that might help, although I was not clear why. The nasal saline rinse is…a little hard to explain. There are two ways to rinse out your nose with a saline solution. (Here is what Wikipedia says about it: http://en.wikipedia.org/wiki/Nasal_irrigation.)  One is the neti pot, which looks like a little tea pot, or the container that someone rubs to release a genie from a lengthy imprisonment. Fill it with a solution of water, baking soda, and very fine salt, lean over your bathroom sink, tilt your head to one side, and pour the solution in one nostril. I promise it will drain out the other nostril, and you won’t drown. The other way, which I chose, since my 54-year-old lower back does not like leaning over very far, involves putting the solution in a small plastic squeezable bottle with a tip like a neti pot, and, while leaning forward only slightly and tilting the head, squooshing that solution in one nostril and out the other. This is best done in the shower, unless you like cleaning up—a lot.

I got the zinc tablets, the Nasonex spray, the plastic bottle (Nasopure brand: www.nasopure.com), baking soda, and very fine salt. And I swallowed, sprayed, and squooshed them, as instructed. Maybe something good would happen. I’m a person of faith and mostly an optimist—and trained since birth to do what authority figures tell me to do.

Still, I was troubled by the uncertainty of it all. I asked a doctor at work to recommend another ENT, for a second opinion. She confidently recommended someone, and I made an appointment, thinking maybe, just maybe, he would have an insight that would lead to healing.

The second ENT agreed with the first one that it was difficult to know what caused my loss of taste and smell. He also agreed that it might return (fully or partially), and it might not at all. I brought the CD of my nasal MRI, and he didn’t see anything the first ENT didn’t see. About the Nasonex and zinc tablets, he said, with a dismissive wave of the hand, “That’s just something we do to make it look like we’re doing something.” I recalled that I daily ingest a multi-vitamin anyway, which includes the recommended zinc dosage. I had to pay a lot for the Nasonex, so I was happy to let that go. The nasal rinse, however, he said was a good idea, although not because it would restore my taste. It’s just good hygiene. “If everybody did this,” he said, “I might go out of business.” I still rinse my nose daily.

I had told him when I arrived that I was aware he might not tell me anything new and that this might be something that won’t be fixed. He was, thus, appropriately direct and no-nonsense. The only new procedure he did was use some kind of probe to look inside my nostrils—which, of course, look fine. I did learn I have a crooked septum—which explains why, if I inhale quickly, one side of my nose collapses before the other. He concluded, rather flippantly I thought, “Don’t worry about it. Just get on with your life.”

I thought, “Easy for you to say, jerk, as you go home and enjoy a steak.” I (and my HMO) wasn’t paying him to be sympathetic, but I was still ticked off. I had allowed myself to be a bit hopeful, so I guess I went from denial to anger.

That evening my wife and I had dinner plans with friends, at a very nice restaurant. By then the disappointing news had sunk in firmly. I wasn’t a charming dining companion, as I imagined a future not tasting delicious food such as what was placed in front of me. Our friends, Max and Carolyn, are two of our favorite dining companions. Conversation with them over dinner is always stimulating; they are smart, interesting, and witty. She is an outstanding critical care nurse, with a specialty in cardiology. He is a top-rate sixth-grade teacher—the kind you would be thrilled to have as your child’s teacher.  Also, they know a lot about food. Carolyn is one of the best cooks I know, and Max always makes excellent wine choices. Talking about food with them has always been fun. My challenge now is to learn to enjoy good company, such as theirs, over a meal, when I have little enthusiasm for talking about food. About that night, let’s just say I wasn’t off to a good start.

I resented what had happened to me and felt cheated. Then at the end, our half of the tab came to around $100. I paid $50 to chew.

Several people had suggested I see a neurologist, so I made an appointment and tried my best to feel hopeful. Would she tell me anything new, or hopeful?

Jerry Has No Taste

The theme of a sermon I preached this April was that God created us as physical beings and that we can find spiritual meaning in everyday physical experiences, such as watching a bird in flight, spotting a pretty leaf, and eating good food with special friends. In the sermon, I said the following:

“In the Road to Emmaus story, you will see that they recognized Jesus when? When he broke bread, blessed it, and gave it to them. There is something so very human and so very spiritual about that. They had had a lengthy conversation, but it wasn’t until they ate together that the familiarity became apparent.  Break bread with a stranger, and you may discover you’re in the presence of God.”

I also said:

“When Jesus said, ‘Touch me and see,’ when he asked for something to eat, he showed us that the physicality of life, the world that we touch and smell and see and taste and hear–this is spirituality waiting to happen.”

What I did not say was that, beginning a couple of months prior to that Sunday, I had lost nearly all of one of those five senses that I celebrated as a means for experiencing God’s presence: my sense of taste.

I’m not a great cook, but I’m a good cook. Having guests over for a meal, planning the meal, buying the ingredients, cooking, serving, eating, talking about the food—sharing all this with friends is a great source of joy for me. I have a healthy ego, so I also like the compliments I sometimes get. I like reading recipes, even if I never prepare them. (One recipe in a Slovenian cookbook began, “After you kill the pig, keep the blood.” I have yet to try that one.) I like trying new restaurants and new cuisines. I like hearing about a good bakery or a place to buy fresh seafood. I like the conversations my friends and I have at a restaurant: choosing a dish, anticipating its delivery, describing the taste and texture. Sharing food with people I love, or with most anyone, often involves deep personal connections.  Those connections, for me, are spiritually rich.

Then sometime around February, 2012, I began noticing that food didn’t taste right. Everything was bland. It took me a while to acknowledge that I wasn’t tasting much of anything at all. I didn’t acknowledge it partly out of denial (“This can’t happen to me.”) but also because I have been trying for years to break my habit of eating fast. I’m a little embarrassed to admit that sometimes I would be halfway or more through eating something before I would realize I wasn’t tasting it, and soon I was almost finished with it, so I would brush the realization aside in my head. (Sometimes denial helps a fellow get through something without going crazy.)

Eventually, I could deny no longer. All meat tastes like plain tofu. Barbecued meat, marinated meat, fried meat—all indistinguishable on my palate. The ham or turkey sandwiches I take to work for lunch are interesting in the way the bread, lettuce, and meat have different textures, but I can taste only a slight trace of the spicy mustard I glob on copiously. I can also slightly taste strong sour flavors, such as pickles. I appreciate the crunch of well—as in, not overly—cooked broccoli, but olive oil, salt, pepper, or Mrs. Dash give its flavor no boost. Hot peppers still burn my lips (I have lost taste, not sensation), but spicy food is little different from the unseasoned. I can sense (though not taste) citrus in my mouth. I know when lemon or orange is in there, but I don’t actually taste it. That’s hard to explain, but it’s true.

I quit eating sweets. What’s the point? Flavor is their raison d’etre. It’s not like I can say, “Well, at least I’m getting fiber out of it.” Most sweets are just a mushy blob in my mouth. If something, say, peanut brittle, is crunchy, that’s a little interesting but provides no flavor. For a while, I kept trying sweets, either out of more denial or hopefulness. Maybe the NEXT bite would mean something. Chew, chew, chew. Hope, hope, hope. Nope, nope, nope. One day, driving back to the office after a day of chaplain visits, I bought a large chocolate frozen custard at a drive-thru. Driving toward it, I recalled the delicious rich flavor I have enjoyed often. I assumed I wouldn’t be able to taste it but had a faint hope that maybe, just maybe, my taste had suddenly, miraculously, returned. That’s how denial works for me. I enjoyed the cold creamy sensation, but, alas, no chocolate flavor, and it left an odd sensation in my mouth that I can’t describe.  That’s a lot of calories with no reward. The last dessert I tried was a derby pie I made for a Kentucky Derby party we hosted, and that was one rich pie, but I tasted nothing. I ate half a piece and threw the rest away—and swore off sweets.

Texture helps a little but not much. Lack of it, though, can be dreadful. Peanut butter leaves this awful sensation in my mouth. Pastries only disappoint since flavors (raspberry filling, yum) are now kind of a ghostly, elusive memory. The buttery, flaky pleasure of, say, a croissant no longer exists. Besides, focusing on texture can lead down a poor nutritional path. I will sometimes—only for the satisfying crunch—eat an amount of potato chips which, if my daughter ate, I would disapprove. Fried chicken can be OK to chew, but the meat under the satisfyingly greasy skin does nothing for me now. Marinate it in buttermilk or whatever all you want.

That Derby Party is the last time I cooked for company. I haven’t decided to quit altogether, but I also haven’t worked up the courage to try again. I’m not the kind of cook that tastes and adjusts seasoning very much, so it’s not that my cooking would suffer. My dread is that I’m not sure how I will handle being an observer, rather than a participant , in the talking-about-how-the-food-is part of the evening—in my own home, at my own table, during a meal that I prepared. I once boldly cooked a meal composed entirely of never-tried-before recipes to see how it would turn out, but, now, why should I try cooking something new if I can’t share the tasting experience with friends? I assume I will resume cooking for company eventually, but, for now, my enthusiasm for it is low.

After finally realizing that simply hoping my taste would return was futile, I made an appointment with an ENT. I wanted to talk about a slight hearing loss in my left ear anyway, since listening well is crucial for a chaplain, and I planned to say, “Oh, by the way, while I’m here: I can’t taste anything.” Soon, the hearing loss became something I hardly thought about anymore.