Hands

I was thinking the other day that I miss being able to give good massages. As part of my curriculum back in the days of my first college major, Athletic Training, we were trained in massage. I absolutely loved being able to use my hands to alleviate pain and provide tangible therapy to the athletes under my care. But even more, I think now and realize, I treasured being able to touch them and offer that as a service as well. As I work here, and as I have thought before, there is a poverty of love in our world, and one of the ways we suffer is by lack of loving physical touch. A few friends of mine definitely possess the gift of touch. When I am touched by them, I can sense their love. But I also notice that because I am not in a place to receive regular physical affection from my friends, I may jump or startle when first touched. The kids I am with on a daily basis thrive on the warmth of physical touch. Their hands and arms and legs are intertwined with mine before I can react, and their hugs are given with all their strength. Just this morning I got to sit with one of my favorite little girls at mass, and she ran her fingers across my skirt, studying my arms and hands and then burying her face against me as we stood. It is only natural to hold her close, my hand on her back as she giggled against my waist. I finally had some baby time with our little Francheese, who is usually being passed from teen girl to teen girl. She clapped her hands against mine then cried to be turned and tuck her head into my shoulder as she then stroked my arm with her tiny fingers. 

Wasson, our new little baby boy! (We had no little boy baby clothes yet).

The time since my return to Haiti has been a constant sea of change, with volunteers leaving, a new schedule to keep, a return to hospital nursing, a crash course in pediatric oncology, a different culture of nursing to learn, new nurses to befriend, and most recently, a move into new volunteer housing. Our new places are very cozy, but a tad warmer than our previous ones – the challenges of being spoiled by air-conditioning, then having to leave it! My face is beginning to resemble that of my adolescent self; therefore the photos including me will be kept to a minimum for a bit! By no means are we suffering – just adjusting. And we are appreciating cold water, ice and cold drinks at an entirely new level. (Yet one more thing that we do not think twice about in the US, but that billions of people live without, so much that my nurses were taught that if medications are taken with cold water they will not work - it is such a rare luxury here).  I am now only a few minutes’ walk from FWAL, but a longer commute from the hospital. But I do enjoy making a house a home, and have enjoyed a bit of housekeeping. The walls are a nice warm yellow, which my friends will know I appreciate. The staff is working tirelessly to accommodate the nearly constant demands which we ex-pats are so good at making, and I now have a fabulous front and back porch to enjoy! 

The new digs, Villa Francesca

My new front porch!

I am now spending half my time familiarizing myself with the Oncology ward at St. Damien. This is the only pediatric oncology program in the entire country. Two passionate and assertive doctors run the program, assisted by a dynamic and straightforward nurse supervisor.  My mornings are spent rounding on each of the patients, reading up on their histories and working through their care plans, meeting with parents of new patients and observing the nurses as they work. I am learning massive amounts each day about the culture of nursing here, the demands placed on families, the sheer challenge and obstacles of a fatal disease in the developing world, the acceptance, submission and the simplicity of faith which are extraordinary.  Numerous cancers are treated here, including leukemias, lymphomas, retinoblastomas, (cancer of the eye), Wilm’s Tumors, neuroblastomas, and osteosarcomas (cancer of the bone). Sadly, however, many children are not brought to the St. Damien program until their cancer is in a very advanced stage, after parents search country-wide for answers to the mysterious symptoms present in their child. Therefore, I was asked to join the staff and help to form a Palliative Care program, so that the children who are determined to be in a terminal state can be treated and supported well.

Palliative care is essentially the support of the whole person and the numerous aspects of a patient and family’s life in the presence of chronic or acute illness. In the States, many resources are available and there is often a multi-disciplinary team consulted to begin planning and implementation of Palliative Care. The patient does not need to be in an advanced state of illness to benefit from Palliative Care – ideally, it will begin at the time of diagnosis, in order to provide for and accommodate the many issues which develop with the onset of illness. These include spiritual care, pain and symptom control, physical and occupational therapy, emotional support, continued schooling, art therapy, decision-making and social support, and the continuous process of educating the family.

There is, of course, a large disparity of resources and care available to the children and families here. But the directors of the Oncology program feel very strongly that this does not mean that the children entering the final stages of life, and even at the start of their treatment, should be forgotten or abandoned in such a state of weakness and pain. I am honored to be able to work with them and to begin training the nurses in this approach to care. This is a slow process, because before anything else, the development of a relationship must take place. I am getting to know the nurses, learning how they operate, observing the relationship between the nurses and doctors, asking oodles of questions as I learn an entirely new area of medicine, and my ultimate favorite thing, sitting with the kids. They are among the strongest, bravest people I have ever met, smiling and nervously approaching the pale-skinned lady as they laugh. They proudly show me their “picky” scars and are glad to oblige when I tell them to slap my hand and give me a picky too. 

Susanna, one of my newest friends

My buddy Christo

The hospitalized child is often very fearful, and carefully watches any approaching person wearing scrub pants or a lab coat. But there is gentleness and power in an outstretched hand. Too often we forget in the rush of tasks to pause for this, and we quickly begin examining a patient instead of approaching them gently. All of my relationships here in Mango, as the Oncology ward is labeled, (each room is labeled with an item, due to the very low rate of literacy, as to accommodate the large number of citizens here who can recognize a picture but not a number or letter), have begun with the simple gesture of that hand outstretched. The kids tentatively and slowly bring their hands to mine, explore my fingers, find my rings, smile and glance back for the security of mom’s presence, and then slowly start talking. The absolute highlight of my week was the sight of a new little friend, Christo, as he recognized me at the top of the stairs, and despite the huge tumor in his abdomen, leapt up the remaining steps to wrap his arms around my neck and hug me with all his might! We exchanged squeezes as we traveled down the hall toward the room where he knew he would have to receive chemotherapy and blood draws, but his smile and instant demand for candy, as he saw it last week in my bag, made me laugh. When we first met, he was terribly scared, but we played through the rungs of his crib and I offered him stickers, which he promptly placed all over his t-shirt. He then showed me his juice and his food. He screamed as he was examined, and then when his blood transfusion was started, and he reached for my hand to hold. What a thrill to gain his trust and then converse with him for the rest of the morning through the door of the office which adjoined his room – that was just the beginning! Now he comes to find me as soon as he arrives, demanding that I feed him his morning spaghetti and sit with him while he watches TV. We snuggle together as he sits on my lap while I work. I was able to sit with his mom and assess how much she understands about his disease, which helps me to understand what the parents’ impressions are of what they are told by the doctors, what they hear and what they interpret from the big words and scary prognosis. This is nursing – what is done in the minutes and hours between doses of medication and vital signs, the constant assessment of the patient and family, the sitting and talking and ministering to them, validating their experience and fears, meeting them just as they are, and providing the answers which we do have in our possession.  It is comforting and encouraging when the easy answers are not there, sharing from our experience, giving insight and counsel while respecting the uniqueness of their situation and remembering that we can never understand exactly how they feel.

I was always a little bit proud of my hands – I thought they were attractive and strong, and my nails have always grown nicely. Then when I entered the hospital setting in the US, nail polish was strongly discouraged and I had to give it up.  On a stupid impulse one afternoon, I grabbed a razor in our inventory room, and as I was opening it, it sliced my finger just so perfectly that a ridiculous series of events ensued. For two hours, a blood pressure cuff was fully inflated and cut off the circulation to my lower arm while attempts were made to stop the bleeding and my blood vessels were cauterized.  A nerve block was given, and the wound was then wrapped too tightly for the next 24 hours. This produced a massive wound resembling a burn injury, put me within days of receiving a skin graft, and deemed me unfit to work for an additional six weeks.  I was terrified that I would not regain sense or motor ability in that finger and that my hands would be forever stained by my incompetence to handle a tiny sharp object. More than that, though, I feared that I would not be able to use my hands to support patients through the most basic tasks, holding them, assisting them in movement, offering massage to friends, even typing on a computer keyboard or carrying equipment. Again, we do not think twice about using our non-dominant index finger, but it is a pretty necessary component of daily life! But now, two years later, I offer it easily to the tiny hands that timidly grasp it. It is held for security during a scary procedure.  I hold the bottle to feed our babies, I balance the numerous supplies and carry them from storage to the clinic, and my little Erline leaps into my arms. I hold Valson and he steadies himself before jetting away, I caress little faces and am led to a seat in the large waiting area and handed a spoon to feed Christo, and I adjust my camera to take photos of the endless poses the children eagerly enter.

Rosenie (r) with Stephanie, one of our newest little ones

Baby Francheese with Sonya, employee of NPH Germany

Some days I sit just craving a hug from a friend or the strength of their hand as it lovingly squeezes my arm and rests on my back. The volunteers hold hands at mass on Sunday evenings, reciting the Lord’s Prayer over the bodies of our recently deceased brothers and sisters. Any of 200 residents of the FWAL program will grasp my fingers as soon as they encounter me. Little Antoine tells me he has a “malade” (problem) with his finger, which is easily remedied with a kiss and a little bit of water. Fabienne and Mama lovingly make me bracelets. The cancer patients give me “five” as hard as they possibly can. I deal out the cards in our game of Uno. I examine the knee of a visitor who has fallen. I wash and dress the newly-burned chest of a school student. I cherish the delicious Haitian 7Up as I drink it.  We cannot possibly count the number of times we use our hands throughout the day, but perhaps we can be a bit more conscious of how we use them and to whom we offer them, outstretched in friendship or offered in prayer, holding pen to paper in the quickly disappearing act of a handwritten letter, dignifying others through acts that confirm the genuineness of our words.