Bobbin…

As I sit down to write a blog on this site after four years of inactivity, I chuckled when the log in and password involved my mother’s nickname, Bobbin. Mom worried always, but was a consistent cheerleader for her children, nieces and nephews and their children. She loved being included in our adventures and appreciated blogs and stories that connected her to the world…especially if all danger had passed by the time she was reading the blog.

My Mom died about this time last year, three weeks after her younger brother. When I realized that I would be in India around this one year anniversary, I wondered how I could take her with me. Mom was a clothes horse–so I decided to bring her scarves with me. 

The scarves brought me back to her earlier vibrant self, who dressed elegantly. (She also enjoyed the pandemic style stretch pants and comfy shirt and also kept a closet stocked with those! ) 

After she died, I found a box of silk fabric AND a saree! Why would my mother have a saree–a long piece of fabric that is wrapped around the body with strategic safety pins.  Was I meant to take it to India? Then what? I have never dared to wear a saree, worried that I would wrap it and pin it incorrectly. (And what if it fell off?) How can I honor my stylish Mom?

I tried to imagine what she had hoped for when she tucked this fabric away in a drawer. I decided to take all the fabric to India.

The saree turned into this:

And the silk turned into:

(The mosquito repellent anklets add a nice touch, yes?)

And this:

Earlier this year, I marveled at the things that Mom’s grandchildren wanted from her house: a corn dryer, napkin rings, a watercolor by her best friend Nora, a cutting board, an elephant carving, cookie sheets. She remains in our lives, with teeny daily reminders.

I do not know what event Mom had in mind when she stored this fabric away but she will be awfully glad when her fabric goes to Mexico for the wedding that she “made happen”.

Absurdly fun

From the start, it was an absurd proposition: we would leave Trivandrum at 3AM to get to Ponmudi early enough to hike to “sunrise rock” and see the sun rise at about 6:30 over the Western Ghats. Shriya Singh, the resourceful grants or Resource Mobilisation Manager at Pallium India, had a friend in her cycling club who made the arrangements with a Forest tour guide, Sarath.  Shriya, true to her title, also mobilized a driver, Satheesh, who used to work at Pallium India.

The drive to Ponmudi was somewhat surreal.  It is a route that we know well from home visits—tangled with buses, auto rickshaw taxis and motorcycles driving the 2 lane road in 3, sometimes 4 lanes.  However on a Sunday at 3am, we sped through the streets and onto country roads with virtually no traffic or even people.  There was a lone dog or two on the streets, and an occasional street light.  The world looked abandoned.

And in 55 minutes we were at the forest edge with a gate barring our passage.  Satheesh knocked on the door to awaken the official to let us pass.  The gate is, in part, to make sure wild animals are not hurt by speeding vehicles.  It is not officially to be opened until 8am.  We were over 2 hours early.  The official called the tour guide to make sure that our story was legitimate.  And then the official woke up the “gate opener” to open the gate.  I would have been happy to open the gate and let him sleep.

 

And on we went, picking up the official Forest Guide, Sarath, along the way.  The guide is “a tribal”—a term that has never felt clear to me.  I have come to understand that the tribal people are people who were socially  and geographically isolated (in forests in Kerala) , with defined spiritual beliefs.  There are about 100 million tribal people in India.  He spoke little English (except “Malabar Grey Hornbill”).  We arrived too early to start the hike so we waited in the cool temperatures at the top of the mountain.  

We arrived at sunrise rock.  The clouds added beauty.  Thanking Christopher Cantu for all the photos in this blog (except a few).

We saw a Malabar Grey Hornbill.  Here is a picture of it that I copied as my picture did not capture the yellow beak.

We briefly saw a Indian bison. Also a copied photo.

No elephants.  I feel about wild elephants the way I feel about grizzly bears. Best not to meet them hiking.

The vistas were breathtaking.

Sarath never broke a sweat, and while we were peeling off extra layers, he remained with his jacket on.

The company was fun:

Having just recovered from jet lag, I wondered if self care should involve more sleep deprivation.  However the awe of skies, mountains, winds, bird sounds renew me in ways that music and prayer renew others.

Thank you Shriya!

Here is your moment of Zen.

Losing yourself in the service of others…

Less than 2% of Indians who need palliative care are receiving palliative care. There are strong palliative care programs in India.  However the population of India is huge and most palliative care in centered in urban areas. Three years ago, palliative care advocates looked to Project Echo  to provide the needed education to teams across the country.  

Pioneered by Dr Sanjeev Arora at the University of New Mexico, Project ECHO uses very specific case based learning via video conferencing to teach specialty knowledge to primary care practitioners, activists, nurses, health care clinicians of all kinds.  The goal is to “democratize knowledge” to create “forced multiplication” of willing and able clinicians who are trained to deliver care that might have been only available to patients who could travel to academic medical centers.  His landmark New England Journal of Medicine paper on the use of Project ECHO to treat and CURE Hepatitis C in the rural areas and in the prisons of New Mexico showed that Project ECHO trained primary care providers can reach the clinical success rates of specialty liver physicians.

Raised in India, Dr. Arora has a special interest in the success of Project ECHO in India to disseminate medical information across his vast country of origin.  It has been highly successful at Pallium India.  

Trivandrum Institute for Palliative Studies team have been using Project ECHO to change access to palliative care. Rajalekshmi Balu, the Project ECHO coordinator organizes physicians, nurses to teach palliative care in a very specific way via video conferencing to physicians, nurses and to the public. Now that the central Indian government has expressed an interest in palliative care with a palliative care policy and the Medical Council of India has suggested that there needs to be a palliative care curriculum in the medical schools, the mandate to meet these monumental educational needs is daunting.


I was lucky enough to watch the excitement at Pallium India during Dr Arora’s site visit last Sundayto Pallium India. How can the small group of specialists in palliative care move this forward for the whole country? How does one measure success? The discussion went on for hours and included the ECHO Director in India and a researcher from the renown Public Health Institute of India, all shown here with Dr MR Rajagopal.

And then I thought about the Veterans Administration (VA) Hospital in Iowa City where I work….

instead of travelling to the VA clinics to teach about palliative care principles, why not use this technique.  In person is great, but the time investment might be better used with video technology.  Could I start Project ECHO at the VA?  Many VAs have Project ECHO currently functional to teach about pain, buprenorphine.  Why not palliative care?    Exciting to think about…

Here is your moment of Zen—my favorite fruit seller at Kovalam with Dr Theo Nguyen (also a favorite).

The best way to find yourself is to lose yourself in the service of others. Mahatma Gandhi

Health Fair, Self Care for Pallium India staff

The concept was simple enough: provide the staff with a measurement of their height, weight, blood pressure, and if they could manage the needle poke, a random blood glucose.

The India Winterim Pain and Palliative Care section students commandeered some tables and blood pressure cuffs. For two Fridays in a row, the staff seemed to enjoy being the patients after all their care of patients during the week.

It was a little puzzling for staff at first that we simply wanted to give them this information for their own health. Each staff member got a card to put in a purse or wallet.

We found some measurements that needed action and we encouraged those staff members to go and get checked out with a doctor.

We also did not realize how painful the needle poke was for random blood glucose. Ian Wallace, now famous on social media for his contributions to Pallium’s healing garden, was clear about how much pain we inflicted.

The Iowa team was thrilled with the humor, fun and good-hearted participation in the first Pallium staff health fair. We hope to keep you all healthy in the years to come.

“You have two ears and one mouth for a reason.” Guest blog from Caprisse Honsbruch

My first home visit was to Palode. My group saw 10 patients with various conditions. There were people with cancer, amputations, stroke sequelae, paraplegia, diabetes, hypertension, and asthma. The age range of the patients were 23-90 years old, and there were 7 men and 3 women.

The experience was not what I was expecting. I was expecting more medical treatment and interventions, but these visits were more check-ups for chronic conditions. There were many social and psychospiritual interventions done, probably because there was a social worker on the team. Some of those interventions included setting a patient up with a way to support the family by raising chickens, making sure the patient’s child goes to school, helping a patient get a disability pension from the government, and taking steps to help the patient rehabilitate their house. That was really neat for me to see because that is not something that a pharmacist is usually involved in. It made me have a greater understanding and respect for what social workers can do. In the future when I’m hopefully a hospital pharamcist, I will go to the social worker because they seem to be able to work miracles for patients’ social needs. Even talking to the patients seemed to brighten their day. I found that interesting because in the USA a doctor’s visit is more like a chore, but in India we were welcomed into the house and treated with the upmost respect by the patient and their family. Dr. Raj said that doctors and health care providers are very well respected in India, and I definitely got that sense in the home visits. There was even an instance in a home of a patient who was very sick that the family insisted that everyone have a glass of fresh squeezed orange juice. I unfortunately didn’t feel comfortable drinking it, because it smelled amazing, but it was little things like that that made me feel very welcomed in the home.

The patient who I connected with the most was a women who was diagnosed with breast cancer 3 years ago, and has since been in remission after chemo and radiation. She has had 2 mammograms since that have been negative, but she is anxious that the cancer could come back. She really reminded me of my mom. She was diagnosed with breast cancer, but has since been cancer free for almost 5 years. Every time she has a mammogram appointment though she is very anxious that they will find a reoccurrence of cancer. She always tells me it not a question if the cancer will come back but when, which as a daughter can be hard to hear. The patient lived in a very nice house with a great kitchen and had a big flat screen TV. So I made the assumption that she was well off. But I learned that you can’t judge a person on material things like houses, clothes, cars, etc. because she was actually in debt. She was staying in her sister’s house, who lived abroad, because she had to sell her house so that her daughter could get married. Because even though dowries are illegal they are still common in Kerala. That took me aback because that is not the culture in the USA. In class we talked about how healthcare puts people in debt but not marriages, so I found that interesting. She was also nervous about her cancer coming back because her daughters are married which means they need permission from their husband to go and help their mother. That also took me aback because the culture again is so different from what I am used to. If my mom needed help because she was sick I would hate to not be able to go because my significant other said no. Finally she taught me that if all you can offer a patient is conversation then that is all right. I’m personally a fixer. If you have a problem, I want to be able to fix it. But sometimes you can’t make everything okay. If a person is dying from a terminal illness, you can’t wave a magical wand and make everything better. But you can listen to them and hear what they have to say. As a future clinician I will work on being better at that. My professors, in my other pharmacy classes have said, that you have two ears and one mouth for a reason. Let the patients tell you what they need. Don’t assume you know what is best based on your personal biases. 

Here are some of Caprisse’s favorite photos.

The best gift a social worker can give: guest blog by Ashley Johnson

Note from editor: Every year the social workers, particularly Sarath Mohan, hope that TEAM IOWA Will include social workers. Our lone social work student this year, Ashley Johnson, from the UI MSW program in Sioux City got to spend time with Sarath before he left for the UK.

During my first day on home visits we saw ten patients throughout what I can only describe as the country/jungle/towns. Finding a patient’s home for the first time would not be an easy feat as I did not see any signs, nor did I remember to look for such things at the time. On the charts they mention home location and additional helpful info, but nonetheless it would be a challenge! For example, after our last home visit of the day trying to get down the hill all the men were out of the Pallium van trying to coordinate a way for our team to stay on the road. It is obvious numerous variables are happening to make sure a home visit happens. That perhaps was one of the first things that surprised me was the energy it took just getting to patients’ homes. I cannot quite imagine during monsoon season. Practicing in the US we have primarily paved roads and access to some degree is available. In my own career the rural areas I have had difficulty accessing and this made me realize the commitment health care often provides to its patients whether it be in India or the US. 

           I tried to stick by Sarath’s side as much as possible on these visits to see what his role as social worker provided during home visits. For a couple of patients, we needed to complete the socioeconomic forms that were not completed yet to better assess what Pallium India may need to provide for a better level of care. At first glance many of the homes looked like they could be considered in the high category of income but when you actually sat down you found out that for one woman, she was living in her sister’s home due to her home being sold for the purpose of her daughters’ marriage. Another patient had 60,000 dollars in debt and no longer had income coming in due to his condition after a stroke. For this patient the Pallium team was getting chickens for him to take care of to use for food and to sell to his neighbors in his community. They had thought about providing him with a goat but ultimately it was decided that chickens were a better economic investment. More examples came into play on how patients were attempting to keep making income to help better their current situation. One man had a dream of selling lottery tickets to provide money and more were making umbrellas to sell.

The last visit was the most striking in the sense of how inadequate the house was the couple was living within. This was the first intake visit so Sarath mentioned that he would be put on a special care team to help start making living conditions more livable. This man was diabetic and an amputee with some skin wounds as well. He was on insulin and there were some conflicting stories on where he was keeping his insulin, but I believe it was being stored in a refrigerator with a neighbor. There was also some talk that it was being kept in some water in their home. This home was rough, there was no real safe roof as it was being held together by logs that did not look stable. They were cooking food from a hole in the ground right by the bed and you could see the ceiling was charred from repeated use. The husband’s wife and mother were there, and they were very kind to Caprisse and I as they kept close to our sides and one pulled me to her and kept looking into my eyes and smiling. It’s amazing the connection you can feel with people without having to exchange words…. That felt like the overall essence of my first day of home visits. What I realized by working with Sarath and the home patients is that I love what I do as a social worker in hospice back at home. I started my medical social worker role for Compassionate Care Hospice just six months ago and I had no idea if my idea of working in end of life care would manifest into a real passion for my work. By this experience I found inspiration from Sarath on how I can work to make my patients quality of life better by how to better communicate and remain focused on income barriers and programs that could help lessen the economic burdens patients may be have. The experience with Sarath and the Pallium team makes me want to be a better social worker at home. A couple of times while walking to the homes I would become overwhelmed with tears as I tried to grasp that I was living this moment and feeling immensely blessed to have the opportunity to witness the lives of these patients. I have had this same feeling practicing at home which made me realized no matter where I am my role as a social worker is where I want to spend my time and energy focusing within. Human relationships are at the core of the social work code of ethics and at the root of my first experience with home visits this is what we focused on and this makes the work so important here and everywhere. Being able to sit down with patients and hearing information that can very often be missed, for example the depression and emotional turmoil that one male paraplegic patient faced was not brought up with nursing/physician and social work provides that platform for patients. A platform to discuss the important emotional turmoil that the disease process brings up for patients and family and that can impact every aspect of the lives of our patients. Our time with this man was not long but it was long enough that he was heard, and I realize now that is the best gift a social worker can give to a patient and family. 
  

 

 

Wellness challenged! Rachel Mullin’s blog on jet lag

 

I knew coming into this trip that jet lag was going to be an experience. I thought to myself that it’d be hard, but it wouldn’t be so bad. I thought I’d be tired, but functional. After all, I’ve worked night shifts that lasted 12 hours. I’ve even traveled internationally before. Fatigue is no stranger to me. After a combined total of 17 hours in flight, I knew this was not a normal kind of fatigue. I knew it was going to be a bit tricky, but I didn’t realize how much I’d be affected by it.

Fuzzy. That was the word I initially thought to use when describing my jet lag experience. The strange thing was that there were times where I wasn’t thinking as much as I was going through the motions. I would get lost in a mind fog and then snap back when I realized someone was saying something to either the group or (more embarrassingly) to me alone. As previously mentioned, I’ve worked long hours on a project before. I understand what it’s like to get lost in thought. The difference between then and now was how quickly I could snap back into reality. I sometimes felt like I was a part of the group but I was not fully present in the group because my reaction timing was slightly off, I found it difficult to come up with responses, and I found myself spacing off several times. This would be a very frustrating occurrence if it happened often and ultimately, I believe it would affect my social health.

My ability to concentrate was shaken. After our second plane from Abu Dhabi into India we had to fill out forms that indicated where we’d be staying, telephone numbers, and our passport numbers. Ann hinted that we might want to take a picture and get our answers in order before we left the plane, so I did. I pulled up a screenshot that I’d taken hours ago but I found that I couldn’t focus on the numbers correctly the first time I wrote them down. It took me two tries to fully get down what I needed to get down, and I actually had someone else from our group to ensure accuracy. I didn’t fully trust that I had done it correctly. I can imagine that someone who had difficulty concentrating on important documents daily would lead stressful lives. Those who undergo chemo may spend a lot of time filling out documents (both medical and legal) so I believe I now have a better understanding about just how difficult that may be to do.

The hardest day for me by far was day two. I woke feeling well rested, excited, and then looked over at my phone and realized it was two am. I rolled away from my phone and closed my eyes, but I couldn’t fall back asleep until five am, when the church bells conveniently woke me up again. My sleep pattern was completely off. By the end of the day I was utterly exhausted, but I knew I couldn’t go to sleep. I didn’t want to. We had a beautiful banquet spread courtesy of lovely people of CET. A wedding reception was concluding next to our table, music accompaniment was playing in the background, and there was a buffet provided. But other than that, I have almost no memory of what happened. I’m not sure that I really talked that much to people. I was focused solely on eating and staying awake. That is the kind of extreme fatigue I was under, and a kind of fatigue I’ve never experienced before. I imagine this may be similar to what chemo patients go through. I’ve read that patients receiving chemotherapy experience great amounts of fatigue. I can imagine that if a patient were to attend a gathering such as a wedding with this fatigue they might be a little sad. While you are supposed to be enjoying the company of others, all you can focus on is your physical needs.

I’ve never undergone chemotherapy or seen anyone in the process of receiving it. As such, I did not have any outstanding biases of my own. I do believe that I had a lack of knowledge, however. It is one thing to read that jet lag is similar to chemotherapy, and another to experience it. Suffice to say, I would hate to experience a year-long jet lag. I feel like it would ultimately affect my emotional, social, and my physical health. In Dr. Raj’s lecture he emphasized the importance of wellness in the form of a Venn diagram. He emphasized that a person should have their emotional, spiritual, social, and physical needs met. In two days I experienced a slight deterioration in my emotional health. A year long experience would truly be awful, and may very well affect all areas of wellness.

This made me think more about how a patient must feel. Let’s not forget, I am a healthy student who was experiencing a temporary state. A cancer patient is not just dealing with tiredness. They may be in significant pain, experiencing other side effects from chemotherapy, having emotional crises, financial crises, etc. I feel like I can better understand a patient now that I’ve experienced one portion of their experience. One stereotype is that cancer patients are extremely fatigued, and perhaps this holds some truth. However, it is difficult to describe how much of myself was affected by a 12 hour time difference. In the future I will use what I’ve learned through this experience to explain the depth of what exhaustion can do to a person using my own experiences.

Meet Dr. Gatha Nair

Dr. Nair is a remarkable co-teacher of this year’s India Winterim course: Pain and Palliative care-learning from each other.  She is currently Chief Resident for the Internal Medicine residency at the University of Vermont. She graduated from medical school in Arizona with a certificate of distinction in Global Health.  She plans to start a cardiology fellowship in the fall.

Gatha joined Pallium India last year in January for a rotation during the India Winterim course.  She served then as a cultural and linguistic ambassador for Iowa students.  She loved the home visits and her energy was infectious.  We asked her to join us this year.

As our teacher, she is exacting in her pronunciation of words in Malayalam, demonstrating exactly where to put our tongues and how to hold our jaws.  She also explains cultural norms, Hindu traditions, and medical facts in ways that have enhanced our experience.  Her enthusiasm, easy laughter, grace and skillful balance of the two cultures melt away the remnants of our jet lag.

She loves to be in Kerala. You can see it in the way she talks to waiters, patients and families, Pallium India Nurses and how she tries to include schoolchildren in our silly antics.

Thank you Dr. Gatha for joining us. We hope to see again in a couple of years. Hope you take a little of Pallium India to your cardiology fellowship in Chicago.

Team Iowa arrived at its second home in Kerala

We arrived at the Trivandrum airport looking pretty good. Christmas lights were everywhere and it looked beautiful at 4am.

We got settled at the hotel. Some of us slept and then we explored Mahatma Ghandi Road. We went to the Connemara Market, the large Central Park, Pothy’s and even found an Ayurvedic pharmacy.

Today, Saturday is a workday for Indians. We are headed for a class day at the Pallium site in Vattappara. But first some of us greeted the sun with the sun salutation and other poses. Rooftop yoga in India!

And we are very proud of Peyton who left Chicago on the waitlist for the College of Nursing, and heard in Abu Dhabi that she got in. Now THAT is a story for the generations to come.

Sukumari Auntie

Editor’s note: Eva Coulson serves as the guest blogger on this post. She is a Pharmacy resident specializing in pain and Palliative care. She delighted us for 3 weeks with her infectious enthusiasm…as you will see.

There are so many things, people, ideas, adventures, and observations in India that I could reflect on but the person that I want to write about the most is Sukumari. She is the queen housekeeper of the Pallium India guest residence quarters. I say Queen with the upmost respect because this is a woman who keeps her guest well fed, happy, clean, and feeling like they just stepped into their new home. Whether you are here for 2 weeks or 2 months, she is a lifeline for how to navigate and live as a foreigner in India.

Sukumari and I first met during my jet lag period, awake at 5 am in a new apartment trying to adjust to the culture shock of India. She arrived just after 7am on a Monday morning.  I was sitting on the couch, surprised by her arrival. She arrived fully dressed in her beautiful sari, holding a bag full of…something, and immediately noticed me- a new face on the couch. She did not look surprised, and she simply smiled, raised her hand in a half wave, while pointing to herself and said “Sukumari.”  I returned the gesture, pointing at myself, I said “ I am Eva.” Her next question was “coffee? Me: YES!” I felt like I made a new best friend.

She moved quickly and decisively to the kitchen, and the whole room came to life. I started hearing things move, bang, shuffle, and saw. I peeked my head into the kitchen after a few minutes just to see what was going on and her next question was “sugar?” I nodded my head yes and within seconds: open, scoop, pour, stir, and I had coffee in my hand.  It was the magical world of India.

My first training breakfast was an omelet with couscous. My co-residents showed me how to eat with my right hand, and I very clumsily made it through the delicious meal.  Sukumari was busy in the kitchen, things always moving and sizzling. Sukumari came out of the kitchen as breakfast, and my second cup of coffee were finishing up. “Lunch?’  “Yes,” my flatmate Delamy said. I went to brush my teeth when I came back, I had a packed lunch and we were out the door, going downstairs to meet the driver at 8:30.

Sukumari arrives at the residency each morning, Monday through Saturday- making coffee, breakfast, lunch, and throughout the day she is busy cleaning, organizing, and creating delicious dinners. This woman is a rockstar. She probably only knows a handful of American-English words but the way she communicates and cares for her visitors is absolutely humbling. She is like an Auntie who has her family members over for sleep overs. She worries about them, learns about what they like, and then pours her energy into making an awesome experience in India memorable and special. She has taught me the names of all her Indian dishes… Poori and Curry, Dosa, Chappathi and vegetable curry, idli and sambhar (stew) and then my favorite appam and stew. This dish involves fresh coconut, when she made it for the house she stands on a SAW, yes a hand saw and grinds up fresh coconut into a bowl. This is so cool!

She made biriyani for dinner one night (it took her all morning) with me watching her every move. She made pancakes –sour dough dosa, and side dishes, this woman can do it all.

Sukumari epitomizes the kindness, hospitality, and warmth that I have experienced at Pallium and all over Kerala on my home visits. It is amazing to see a culture that is not known for hugging, or doting attention, provide such hospitable care through their homemaking talents, and their generosity making food. Sukumari is not a hugger. She would rather not have me in her personal space watching her every cooking move, but she tolerates me and has one of the kindest, giggly laughs I have ever heard. it is wonderful and you can tell she is pleased. A woman of few words, yet she knows I enjoy two scoops of sugar in my coffee and tea, and that I love two cups of coffee every morning. She makes my favorite foods when I ask and everything she puts on the hotplates in the kitchen turns into golden deliciousness.

Sukumari is a woman of grace, endurance, and resiliency. Sukamari, thank you for an unforgettable first trip to India. Pallium India, thank you for your hospitality and acceptance of a new visitor from Iowa. India, thank you for the richness of  culture, tradition, and hospitality, including your love of the “selfie”. It has been a great trip!

Sukumari’s Marsala Chai Tea:

3 cups of water

½ tablespoon of tea powder

1 tsp of marsala powder

2 heaps of milk powder

Add sugar to taste

Boil the water on the cooktop, add the tea powder and let boil for 1 minute, then add marsala powder to boiling water and tea powder, and turn off flame. Let steep together for 1 minute and then strain. Add in milk powder and sugar to taste. Enjoy!