Kilimanjaro: Fire and Ice

The true result of endeavor, whether on a mountain or in any other context, may be found rather in its lasting effects than in the few moments during which a summit is trampled by mountain boots. The real measure is the success or failure of the climber to triumph, not over a lifeless mountain, but over himself: the true value of the enterprise lies in the example to others of human motive and human conduct.” —Sir John Hunt, leader of the 1953 British expedition that first ascended Mount Everest

Ready to roll! Kilimanjaro: the CEO Challenge 2016!

This was a week of triumph over self, as our group of nine attempted to summit Kilimanjaro, the largest free-standing mountain in the world and the rooftop of Africa. Kilimanjaro was born 300 million years ago in fire, when massive tectonic plates in Asia shifted, creating the Great Rift Valley and pushing up sections of the earth that eventually formed the volcano Kilimanjaro. If you climb Kili, like I did this past week, you will see miles of enormous lava rocks of black basalt littering the mountain, rocks that were birthed deep in the womb of planet Earth and blasted out when the volcano exploded. During the ice age, glaciers formed, adorning sections of Kili with massive frozen sculptures.

I thought of the similarities to hemophilia this week: bleeding into joints is the fire, the pain; ice, the pain reliever. And trying to improve hemophilia health care in developing countries? A grueling climb up a mountain is a good metaphor. For a successful climb you need self-discipline to get in shape, leadership, guides or a map, a compass, equipment, trust in your guide, and trust in your teammates.

Our team? An amazing group! Eric Hill, vice president and COO of Diplomat Specialty Infusion Group, and his 15-year-old son Andrew. Eric serves on our board of directors for Save One Life and sponsors 31 children. Eric climbed with me in 2011 with his son Alex. Rich Gaton, co-founder and president of BDI Pharma, a specialty distributor that provide hemophilia and other therapies. Rich’s company is a proud member of Save One Life’s Dedication Circle, sponsoring 20 beneficiaries over the past eight years. With Rich are his wife Wendy and two daughters, Taylor (20) and Samantha (16). Mike Adelman, vice president of commercial operations for Aptevo Therapeutics, Inc., manufacturers of the recombinant factor IX product Ixinity. And Jim Palmer, MD, a surgeon from Philadelphia and friend of Mike’s. Individually, we wished to triumph over self. Together, we climbed to raise over $65,000 for Save One Life.

Day 1: August 7, 2016 Sunday

We all gathered in the lobby of the Kibo Palace hotel in Arusha, Tanzania, excitement shocking us like static electricity each time we hugged one another good morning. Our guides, Hesbon, Kelvin, Victor and Edwin, helped us put our stuffed rucksacks on the bus. We clambered aboard and squeezed in among porters, guides and bags. It was a two-hour ride to the Machame Gate, where our adventure awaited.

First we stopped at the familiar store we stopped at five years ago, when Eric and I and another group summited Kili, to pick up snacks. We sat about in the sunshine on the grass, waiting for the guides to return. Hesbon went with me across the street to a shop to get a Nalgene bottle, for $7 which he fronted. I don’t think I ever even used the bottle in the end.

Finally, back on the road. We passed roadside shops and rural homes, dust swirling from our speed. When we reached the Machame Gate (elevation 5,718 feet), we felt pretty calm. Outside the gate, a mob of vendors hawking shirts and hiking supplies. Inside, the gate was swarming with hikers, porters, bags. It would be a very late 12 pm before we started our official hike. In the meantime, Hesbon filled out paperwork while we put on gaiters and filled our Camelbacks with water. We would carry a 25-lb daypack each day while our porters would carry our 50-lb rucksack, along with their own daypack and all the accouterments of camping for nine: mess tent, folding chairs, port-a-potty, our tents and mats, and food for 29 porters, four guides, a cook and nine hikers for six days!

Our first day then had us hiking about six hours to the Machame Camp, elevation 9,927 feet. The route was a groomed trail for the most part, through a dense and moist rain forest. It was cool and progressively dark. The forest was lovely, lush green, with trees covered in soft moss, making them resemble a young deer’s antlers, covered in velvet. Many birds serenaded me. One had a distinct sound: “Tweet… bong!”

Hitting the trail!

The hike was harder than the team expected and harder than I recalled from five years ago. Very steep, working our quads and calves intensely. At times we broke away from one another, then paired up with different teammates. Wendy took her time as she had asthma; husband Rich stayed by her side the entire day. The lead guide Hesbon also needed to stay with her as he always would be last to enter camp, to ensure his hikers were all present. Mike was stricken with food poisoning the night before. The hike was very difficult for him but incredibly he persisted and arrived at camp one. By 6 pm, the weather turned rainy and cold as we all stumbled at various times into camp. It was dark. Camp was crowded with people, so different than five years ago when there were perhaps three teams, spread out comfortably over the camp ground. Now there were maybe ten teams, with all their gear and porters and tents. Pandemonium in the dark, as we all shivered in the rain, waiting for our team to assemble and find one another! Our porters had our camp ready, and we finally found our tents and crawled inside.

I had a single tent; everyone else shared one. As I would each night, I laid out my sleeping bag, stuffing in my clothes for the next day to keep them warm when I awoke and placed necessary items for the night close by: Kleenex, water, cough drops. I was nursing a cold that would later strike my chest and make the hike difficult for me. One by one, we were being hit with physical challenges to the climb. Dinner was welcome, though we had to grope our way in the dark to the mess tent, careful not to trip on the tent stakes. Juju, a young man who doubled as a porter, would serve us each night. Each dinner usually started with steaming soup, rolls, followed by a main course– chicken, rice, beans, for example. Our team sat about the table, eating, joking and comparing experiences of the day. By 9 pm we went back to our tents, and crawled into our sleeping bags.

Day 2: August 8, 2016 Monday

Gaton girls at the Shira Cave Camp

I awoke at 4 am to the sounds of the porters preparing for the long day ahead. I had a pretty good night’s sleep though. My sleeping bag, rated for 0°, is toasty warm, making it hard to leave each morning as the temperature dropped more and more the higher we went. Each day started the same: Juju and Able brought us each tea or coffee first thing, to warm us up in our tent. This was a luxury, tea in “bed”! Then, they brought a plastic bowl filled with very hot water, to wash and brush our teeth in. You cannot imagine how important one little bowl of water becomes. Kilimanjaro is very dusty, and even by day two we were coated in dust. Washing was a luxury, and that little bowl of water became something I was excited to see each morning.

Breakfast on Kili

Then breakfast: usually a round of fried eggs, toast, jam, more tea or coffee, pancakes. Yes, they prepare all that fresh for us each morning! We top off the Camelbacks with water, toss in electrolyte pills, stuff in our rain gear (you can’t go anywhere on KIli with rain gear) and anything else needed for the day, pack our sleeping bags and clothes in the rucksack, and get ready to leave.

“Twende!” shouts the guide Kelvin, a big guy, at least 6 feet tall, who walks with a noticeable limp. Let’s go! We had our concerns about his limp, but also learn he was a national soccer player in his time. The leg injury forced him to retire, and he was able to still climb well, despite it. Mike is still not well, Wendy was much improved overnight, and the Gaton girls each have slight headaches, from the altitude. We are all taking Diamox, a hypertension drug that doubles as an altitude-sickness pill, but symptoms still appear in each of us from time to time.

Laurie Kelley and Mike Adelman hit the trail on Day 2

Today’s climb was through a completely different geological zone, the Moorlands. Gone were the towering green trees and milder temperatures of the rain forest. Starting our hike with a bang, we immediately ascend a rocky path that leaves us gasping. The entire day would be spent climbing on rocks and not a trail, much like my Mt. Washington training hikes. The air was cold, and we were encased in cloud cover all day. We would miss some stunning views of nearby volcanoes, as we could see little but the path ahead. As we ascended, we put some space in between us on the hillside; through the mist, seeing other climbing parties in their various colored rain gear, I thought we looked like brightly colored beads strung on a necklace draped on the grey neck of some ancient beast.

We passed the hardier vegetation in this cold climate: the Everlast plant with its pretty flowers, and the “antifreeze” plant, which closes each night to protect itself from the cold. The topography has changed radically.

We climbed from 8 am until 2 pm, reaching Shira Cave Camp, at 12,355 feet. By now everyone was feeling good, except Mike. But he never complained, and still kept plowing forward on this difficult hike. At 4 pm, Edwin, a cheerful 28-year-old guide, asked us if we wanted to do a 45-minute acclimatizing climb while dinner was prepared. Despite the large number of climbing parties, there was more space at this camp, and we spread out. Eric, Rich, Mike and I all did the acclimatization climb, which was not hard. I felt great at this altitude and relished the climb on the rocks, which were beautiful.

Jim Palmer, our team doctor and new friend!

Later in my tent, I wrote a bit about the day and felt the cold seeping in. Tomorrow will probably be freezing temperatures when we awake!

Eric Hill and son Andrew: my second time climbing Kili
with Eric!

Day 3: August 9, 2016 Tuesday

Our strong porters

I wondered when I woke up, why am I doing this? Sleeping in a bag on the ground, freezing cold, facing a long hike ahead. I could be home, clean and warm, having summer fun! That was the one and only time I thought this during the six days, caving in for a moment to a human desire to escape misery. Instead, I switched to thinking what fun this was, to challenge oneself, to share hardship with fellow teammates, to see who and what we all are deep inside. I dressed careful within my sleeping bag, then braced for the cold. Frost etched all the tents as we emerged like lethargic bears awakening from hibernation. The sky had cleared! Now we could see other volcanoes, including the summit cone of Kilimanjaro, Kibo Peak. That was our goal! Everyone was excited. Our goal! Kibo Summit on Kilimanjaro Still smiling!

Our goal! Kibo Summit on Kilimanjaro
Still smiling!
Lava Tower

By now I was coughing with a chest cold, complicated by all the dust and increasing cold air. Everyone else was well but coughing too. This would continue for days even after our climb. Breakfast was high energy and we could feel anxiety; we wanted to get going. Breakfast was hot but soupy porridge, toast and tea, and fried eggs. By 7:30 am we were on the trail, looking forward to a four hour hike through the Barranco Valley. This was a totally different kind of hike today, mostly flat with a few hills to navigate. Victor, our guide, took my camera and snapped dozens of photo of us as we climbed. We had on warm outerwear now, as the wind picked up. By noon we were at the Lava Tower, a massive rock formation jutting out of the ground, looking a lot like a mini version of Devil’s Tower in Wyoming. Perfect spot for lunch and we all joyfully sat at the table. By now our team had gelled beautifully with each person playing a role. Mike was our jokester, keeping everyone laughing with his witty remarks. Samantha was our musician, and she and Mike began thinking of songs we could sing to use pole pole, which means slow, slow in Swahili. It was hysterical listening to the many songs of the 60s and 70s that accommodated this but my favorite was set to Mony Mony.

Descending into Barranco Valley

After lunch we checked gear, loaded up our stuff, and headed out for one of my favorite parts of the climb: the descent into the Barranco Valley. Our plan was to ascend all morning, to 15,000 feet, which we did at Lava Tower, then descend and sleep at a lower elevation, so we can acclimatize better. Barranco Camp, our goal, was at 13,066 feet. Passing through a natural gate of volcanic rock, we descended into the valley carefully. The topography changed again, with rocks surrounding us on the hills, and strange trees appearing, designed to withstand the wind and cold. These giant senecios are actually cousins to the daisies! And they looked like truffula trees, whimsical creations of Dr. Seuss, which was appropriate as each black boulder we passed was coated with moss, that appeared as little yellow fu manchus. It looked comically like hundreds of black-faced Loraxes were watching us pass through the truffula tree forest!

Strange senecio trees

As beautiful as the descent was into the valley, the cold was seeping into our bones. Even Rich Gaton, who is so stoic and strong, confided he was freezing. My chest cold was painful and persistent now, and my nose was running chronically. When we arrived at camp, dotted about with colorful nylon tents, the weather was foggy, dreary, and cold—so cold. How would we do the summit if this bothered us? Andrew and I were shaking in our rain gear while heading for dinner at the mess tent. Our tents for sleeping that night were close together, so much that when Wendy or Rich so much as rolled over, I would know it! I felt badly as my coughing was going to bother my teammates. Wendy always seemed to have the right medicine for the right moment. She was our warm nurturer on the trip, despite struggling with asthma in the cold air this entire time.

Day 4: August 10, 2016 Wednesday

Summit Night!

We must embrace pain and burn it as fuel for our journey.—Miyazawa Kenji

Mike demonstrates how cold it is!

Today we would climb to 15,239 feet to Barafu Camp, the final camp before the summit assault. First we faced a 7-hour hike, including scaling an 800-foot rock wall right after breakfast, then a long hike to camp, braving cold but more detrimentally, dust. We were excited, though! We started our day with the usual hot tea in the tent, followed by my priceless little blue plastic bowl of hot water. By now we have given up any semblance of being clean. Dust is everywhere. Breakfast is a time to share, be social, joke, check in with one another. Everyone was doing well, with an occasional high-altitude headache that faded after ibuprofen doses.

We geared up, and began the climb. Again, one of my favorite parts of the trip! My quads are feeling fantastic after all the training I did this summer, hiking Mt. Washington and working with my trainer, Dan French. In fact, I would not use my trekking poles on the entire journey, except for the rapid descent after the summit. So here, I vaulted straight up the wall using my quads and balance. Everyone did well; everyone scaled it and enjoyed photos at the top, where a crystal blue sky greeted us. The view—spectacular. We could see down into the valley. Our camp was now just a colorful speck. Our team was smiling and happy!

Onward with no time to lose. We marched down the valley, on slippery, dusty trails that plummeted down at 45° angles at times, maybe even steeper. Our guides held our hands and prevented falls whenever possible. At the bottom, we crossed creeks, jumped rocks, and made it to a flatter surface, dusty with volcanic ash powder, and dotted only occasionally by the oddly placed massive boulder. It was a surreal, primitive, prehistoric landscape. Grey and black base, domed by a brilliant blue ceiling. We were feeling the effects of altitude, which slowed us a bit. Eventually we started to ascend again, up the trails, where flat slabs of shale chimed when we stepped on them, adding a touch of class to the barren landscape.

By the time we reached base camp, we were struggling with oxygen, sunburned and elated! This was it. What we came for. What we prepared all year for. The Moment! The entire camp was perched on a mountainside, and before us was the stunning, magnificent Kibo Peak, beckoning us to climb. We could clearly see its white glazed top, its rocky sides. Kili is a beauty of a mountain. I felt awed and honored to be standing before it. I made my way to my tent, ditched my backpack and gear and wandered about till all of our team made it to the camp. My coughing had gotten worse and my voice was hoarse and raspy. Hesbon offered antibiotics as a precaution. My lungs are my Achilles Heel, so I took them. They immediately gave me severe heartburn, so badly I was not able to eat much lunch. This was a bad sign as I would need my energy to summit.

But attitude and motivation go a long way, and I was pumped up! Our plan, explained Hesbon to the group, was to have a light dinner, then return to our sleeping bags to catch maybe a few hours of sleep. Then we would depart in two groups: the first was Eric Hill and son Andrew, who proved to be the mountaineers of the group. They could go faster than us and wanted to not have to stop for breaks (stopping for frequent breaks can refuel the climbers but can also allow the cold to settle in, and can actually demoralize the faster climbers who crave to keep moving). Their guide would be Kelvin, and they’d leave at 1 am Thursday morning. Our group was the second group, guided by Victor, including everyone else. We’d leave at midnight. Wendy opted not to summit, which was disappointing to all, but the right decision. She had struggled with asthma and dust the entire day, and it was quite frankly astonishing she was even at base camp. As sweet as she is, the woman has a core of steel!

I actually was able to get some sleep, though had to pass on dinner, as my stomach burned with the aftereffects of the antibiotics. At 10 pm, I awoke and started planning what to wear to the summit: layers. Incredibly, the weather was mild, at only 20°, with almost no wind. This was a stark contrast to five years ago when it was -5° with 50 mph gusts, freezing us, sapping us of strength, and cloaking any view with white out conditions. We couldn’t get off Kibo fast enough then. This time would be radically different.

We gathered in the mess tent and did a gear check. We were each assigned someone to carry our backpack and monitor us. Team Kilimanjaro does a great job of motivating climbers as well as monitoring their physical condition for signs or mountain sickness. Off we went!

The guides forced us to go pole pole. One step, then another, as slow as possible. They also created a rhythm, so important in keeping your pace and momentum. The night was clear and millions of stars burned overhead. It was a night created for a perfect summit! Step, swing, step, swing went our gait. Up, up the rocky path to the summit. I monitored the time and by 1:30 am we had our first break. Hydrating is key, though water tends to freeze in the Camelback tube. I looked upwards at the infinite sky and saw constellations: Orion the Hunter, Taurus, and then Cassiopeia, shaped like a W. The W was upside down, forming an M (for mountain?) over Kibo, and it guided me through the night. Twice I saw shooting stars, like fireworks celebrating our summit. I took the time to take out my iPod and started playing music to keep me going. Five years ago I lost track entirely of the night, and 7 hours merged into memories of only about an hour. Not this time: I played about three hours of Metallica and the Doors, and then Guns N’ Roses. At 5 am, I was actually dancing with the porters on the mountain, gyrating as they sang, then playing air guitar to Welcome to the Jungle….

Our goal
Clowning around at base camp: 15,000+ feet!

And then the iPod died. I knew from then on it would be a struggle. While hoping to summit at 7, our group was slow. This was good as no one got sick, but it depleted that much more energy. The guides forced Red Bull down us, which I detest but drank. It instantly gave us energy. Stinger waffle snacks, Gu gel, hot tea, anything to keep us energized. But the energy drained away. I bonked. I had been running on music and fumes and now my music was gone. It did a psychological number on me. Why didn’t I keep a second iPod in my other pocket! (Note to self for next time…)

I thought about the kids I know who struggle with hemophilia and poverty. This suffering was ordinary, a luxury, self-imposed. No big deal. Just put one foot in front of the other. The trouble was, my feet would not always respond to my commands! Victor took my arm and guided me, assuring I would not stop or sit. Sitting down was the kiss of death on the summit climb and was not permitted.

Mike was now doing great, finally over his food poisoning and feeling strong. Amazing! Jim was confidently plugging away, and never once seemed to fatigue. Rich Gaton and I climbed closely together, with his daughters. Without their mom there, I felt a deep need to stay close to the girls. They are strong, but I had done this climb before and knew the pitfalls. Self-doubt, giving in to fatigue, wanting to quit—been there, done that. Rich and I conversed, which was nice, as it kept our minds off the fatigue. Dawn broke behind us, a red orb peaking through the clouds below us. Funny, sunrise was happening below us! Above us, the summit.

Day 5: August 11, 2016 Summit Day!

Incredibly, we reached Stella point at the brilliant dawn of day, at 18, 848 feet. This was a milestone for sure, and you could see Uhuru Point, at 19,349 feet, the official summit, up ahead. It seemed so close and, in my mind, addled by lack of oxygen, I thought it was only a ten minute walk. I told this to Taylor, who was exhausted and ever so politely said, “I think I’ll stay here at Stella,” and sank to a rock. We cajoled her, and I told her just ten more minutes! Think of how you will feel if you stop now! Hesbon pulled her up and she stumbled on. I needed Victor too to guide me on. The ten minutes was actually another hour! Perhaps the hardest hour of the entire six days was getting from Stella to Uhuru, but we all did it.

We did it! At Uhuru Peak, the summit! Save One Life team

We hugged, we posed for photos with our Save One Life banner, and actually explained to some fellow summiters what the program was all about. I looked about at the view I couldn’t see five years ago when I first summited. There are no words: a massive volcano, with a deep caldera of lifeless moondust, shocked with gargantuan glaciers. The glaciers are blue tinted rectangular structures that you could compare to alien spaceships, or modern architectural skyscrapers or, as Taylor put it, like the rocket popsicles we ate as kids. I struggled to find a way to describe their icy beauty, like frozen fortresses on display for millions of years.

We needed to get down as oxygen is only 50% at the summit. We linked up one by one: Jim, Mike, Rich, Samantha, Taylor, me, our guides, and started the descent. Eric and Andrew were already on their way down. This would take over 5 hours and was another punishing trip. But for now, we gleefully focused on the goal we achieved and worked so hard for: the summit. Somewhere in my oxygen-deprived head, I was also thinking of what this could mean for Save One Life and the patients we serve. Money for programs; motivation to keep persevering despite setbacks and challenges; and perhaps, another summit climb, when more captains of industry like Rich, Eric and Mike join us to experience the outer limits of endurance, to raise money and awareness for hemophilia in developing countries, and to triumph, personally and professionally. When there is a common cause to help others who suffer, a purpose bigger than ourselves there seems to be no limits to what a group of compassionate people can accomplish.

Thanks to my teammates—you are strong, exceptional, compassionate and brave! In particular, thanks to Eric Hill for suggesting this climb and for his leadership, and to Dr. Jim Palmer for his advice, services and wonderful attitude! Thanks to Team Kilimanjaro for safely escorting us on this amazing journey. Thanks to everyone who contributed to our fundraiser, for you made this climb successful and worthwhile. Please visit Save One Life to learn more about how to sponsor a child with hemophilia in need, or to get involved. Get ready for the Kilimanjaro CEO Challenge… 2017?

“I speak of Africa… “

By our calculations–5 hours!

I speak of Africa and golden joys—William
Shakespeare from Henry IV, Part II c. 1597

I just returned from nine days in Uganda, to assess the Haemophilia Foundation of Uganda for application to Save One Life, Inc., and also to visit with local families with hemophilia, to better understand what their struggles are. I have to say how impressed I am with the HFU, its volunteers and the accomplishments they have made to date. With board approval, we would be able to induct them as our 13th program partner. Below is one patient visit, which will give you a sense of what families in Uganda face. Their extreme poverty (average annual income is $500) is compounded severely by how far away they live from Kampala, the capital.
Kampala farmer’s market

Last Saturday, April 23,  Agnes Kisakye, the executive secretary of HFU, arrived in a hired van at 7:30 at my hotel, the Sheraton
Kampala, which is perched atop one of Kampala’s seven hills. We first stopped at the city square
market for bananas for breakfast. I didn’t get out of the van, but we were
swallowed up in a swarm of Ugandans, all busy shopping, negotiating prices,
filling plastic bags with fruit. A hive of frantic activity. The bananas–called kabaragara--were
small and sweet and I devoured three. The day was cool with blue skies. We were
ready for a long road trip, south of Kampala.

Carrying banana leaves
Scenes as we leave Kampala

It turned out to be way longer that we thought. A
three-hour trip became 5+ hours trying to find this one family in Kyabbogo. At
least we had a very comfortable van and Agnes is a great travel companion. She
is only 29, but very mature, socially conscientious and dedicated. She’s a registered social worker, and I was quite
impressed by her. I wish I could have tape-recorded the things she said; so much wisdom, though I knew many of these things because it’s the same in so many
countries. Her brother Joseph, now an MP (member of parliament), is the person who contacted me back in 2008 requesting help.

Tea plantations

[In fact, Agnes reminded me that I was the first to help Uganda. In 2008 an Indian working in
Uganda who had a child with hemophilia, Satish Pillai, emailed me about setting up a
foundation, and getting factor for his son. We worked together through email only, and he did all the groundwork in establishing the HFU. Satish later had to return to Mumbai, India but
appointed Joseph Ssewungu, a headteacher and father of a child with hemophilia, to replace him. Joseph and I had a
few emails back and forth, and in one he mentioned he had read my book, Raising
a Child with Hemophilia. I found that amazing. But eventually things quieted, and other countries in need diverted my
attention. 

Beauty of Uganda

We stopped en route to buy groceries for the families. Though it
was just a little street market store, we got carried away and spend $120.
Agnes seemed aghast at how freely I spent money; she was hesitant to suggest
anything because she didn’t want to take what she thought was all my money. We
bought rice, sugar, salt, Coca-Cola, cookies, lollipops, Vaseline (“For their
skin,” Agnes said), soap—lots of soap—tea, loaves of bread, and cooking oil. 

Back on the road we chatted openly, like family members.  What a sharp girl she is, I thought; fluent in English, educated and a devout
Christian. We agreed that this work was our calling in life, and nothing could
stop us from helping the poor and suffering. I asked her when she knew she wanted to be
a social worker.
“I always wanted to make an impact, “ Agnes
recalled, “since I was young. I wasn’t sure exactly what I would do. But I
loved it, the idea that I would make a difference in someone’s life. I always
wanted to start an organization. I said to my friend one day, ‘You and I will
start an organization to help people’.” 
It hasn’t been easy trying to get the Haemophilia Foundation of Uganda
off the ground. “Being a volunteer is difficult. Some people show interest and
start to help us, but later they quit. I used to work as a volunteer for an
NGO, for HIV/AIDS education.” But when Satish left, she felt compelled to help
her brother full time. Now she volunteers full time, Monday through Friday and
many a weekend, to run the HFU. There are days when she stays at the Mulago
Hospital all day and into the evening—meeting with doctors and staff, and
counseling patients.
By 12:30 pm, we arrived at Kyotera (“Choterra”), took
a right, and the road deteriorated from paved to dirt roads, rowdy and
unpredictable. We had stopped many times along the way, to ask locals on the
side of the road where we were going. The frequent stops allowed me to drink in
the fleeting scenery: the dusty, red clay roads that branched off from the
highway and paved roads, forming a network like blood vessels throughout the
country. Everyone seemed to move at the same pace, languid, at ease. There are no beggars and everyone works. Down one alley, a small child
in shorts and plastic sandals lugs a huge blue plastic container with water and
disappears into a slum. Roadside shops sit shoulder to shoulder: one sells
tires, one sells headboards for a bed, unvarnished and raw, another sells colorful
clothes and markets them on stark white mannequins, oddly out of place. Some
young men wearing dusty clothes and a few teen girls in worn and damaged dresses—obviously
donated (one is a shiny party outfit; one looks like a Halloween Tinkerbell
costume; another is a tight club dress) wait patiently at a pump while a young
man furiously wields the handle to draw water from the community well; a small wooden
cart belches thick smoke from the meat cooking on it, filling the air with a delicious
smell of beef, and I realize I am suddenly hungry; plump women, wearing
colorful wraps around their waist and patterned turbans to protect their hair
from the dust, balance fruit and vegetables on their head to sell or to bring
home; three little children, the dust turning the color of their deep brown
skin to chalk, dance in rhythm to the music pulsating from a radio in front of
a store while an adult eggs them on. Everyone is barefoot, or at most
wearing just sandals or plastic flip-flops.
When the children on the roadside glance at me,
if they are not too shy, they break into beaming smiles and wave. It’s
encouraged to wave back, and I try to keep the window down when we ask for
directions so I can wave. “Muzungu!
they shout sometimes, their word for anyone not from Uganda, though mostly it
refers to white people. It’s not a slur; it’s just their word, much like when
the children of Haiti shouted “Blanc!” (White!) when they saw me, and tried to
touch my white skin.
As we drive, the pavement
gives way to hard red clay, with shoulders that sag, and the van rocks back
and forth with the unevenness. The rains and traffic have created deep ruts. We
roll up the windows as the van’s tires churn the clay to powder. Now the roadside stands have disappeared and only solitary homes are
spied through the thick vegetation. The homes for the most part are nice for
rural homes. Mud poured into a wood frame, and hardened, with a thatched roof,
or brick, made by hand, with a corrugated steel roof. Everything is cinnamon red.
Red dirt road, red brick homes, red-rusted steel roofs. Red and green are the
colors of Uganda.
There are several types of poverty: urban poverty,
with slums, poor hygiene, noise, pollution, alcohol, crowding, waste—but access
to hospitals and health care. There are megaslums, which defy the imagination,
where residents live like ants in an unhealthy and often dangerous colony. And
there is rural poverty, with lush vegetation, farm lands, rich soil,
fresh air, room to grow—but a lack of transportation, customers, and most of
all, lack of health care. Still, the scenery is beautiful, even if poor.
When we pass one small thatched mud structure,
Agnes says, “That’s witchcraft.” Noting my raised eyebrows, she continued.
“Witchcraft is still practiced here, especially in rural areas. That would be a
witchdoctor’s place to meet with families. He will diagnose someone, and then
offer a remedy. It is so crazy! He might say, ‘Take the fingernail clippings of
your child with hemophilia, of the parents, of the relatives. Now go throw
those in the river. The river will carry them away and with it, the disease. Your
child will be cured.’ Or he may take some backcloth and banana leaves and wrap
up some part of the person—their hair, for example—and say now the disease is
buried.”
She added, of course, it’s a scam. The
witchdoctor will first do a bit of research. “He checks with other people who
work with him, to learn more about the patient. What are their symptoms? Who is
sick? Who has been sick in the family? Then when the family goes to see him, he
will say, ‘It is your child that is sick?’ Yes! ‘He bleeds a lot?’ Yes! So it
looks to the family like he is magical and knows everything.”
The Kajimbo family: four boys with hemophilia

Going to a witchdoctor sounds quaint, but it is anything
but cheap. In a country where the average annual salary is $500, and an
educated physician earns about $200 a month, a witchdoctor can charge anywhere
from $100 to $300—a session! This is the power of culture, traditional beliefs
and desperation. Health clinics are hard to find and far away. Rural families
become victim to their limited education, isolation, and the charisma of the
witchdoctors. “There are no government policies or laws regarding witchdoctors,”
Agnes adds.

After 30 minutes of jostling, we arrive at the
destination: a vermilion brick-and-mortar home with a spacious front yard of
dirt, and surrounded out back by farming fields. This is where the Kajimbo
family lives. We unfolded ourselves out of the van and stretched, smiling at
the children who gathered in curiosity. The sun warmed our visit. We decided
first to get acquainted, and then to bring in the gifts. The mother Harriett
and father Richard came out of the house first, and shook hands, he smiling
reservedly, she smiling in anticipation. The first thing I noticed was that
their clothes were remarkably clean compared to their surroundings, as though
they had just changed. Harriett’s eyes sparkled, and her hair was a woven
masterpiece, plaited to perfection. Her dress was bright blue and white. Richard
wore a comfortable blue polo shirt and khaki pants. They were in great contrast
to the children, who were dressed in stained and torn clothes, and who went
barefoot, and had dirty face and hands. It was incongruent.
Laurie Kelley with baby Joel

Still, the children seemed happy and at ease, and
deeply curious. We entered their home. There was no where for the family to
sit, so they congregated on a rug covering the packed earthen floor.
The baby, Joel, was fat and happy, and I was thrilled to take him, diaperless—always
a calculated risk—into my arms, and jiggle him on my knee. Agnes and I were
given the one bench in the welcoming room. Each child came to us one at a time,
and reached out to shake hands while bending deeply down on their knees; this
is a sign of respect for elders, and not easy to do for children with joint
deformities.

Inside the red brick home: earthen floors

Introductions: Six children, four with
hemophilia. Bad odds. January, age 15; Emmanuel, age 13; Richard, age 9; and
Ronald, age 5. January smiled but looked a bit stunned; Emmanuel had a ready,
warm, friendly smile, as if he had been expecting us at long last; Richard
conjured a mischievous smile, which made you wonder what he was thinking; and
Ronald tightened his lips at us, refusing to surrender any hospitality. But my,
were they all beautiful children. A sister sidled in through the raggedy
curtain that separated the welcoming room from the other five rooms. Josephine
seemed shy but wanted desperately to make friends with us.

Somehow barriers came down fast and we were
laughing in no time. A pod of neighborhood children plugged the doorway,
leaning in, eyes wide open in astonishment. The driver had brought some bags
over by now, and we handed out lollipops first—no barriers were left after
that. The children saw at once that they came first. There were plenty to share
with the neighborhood children, which no doubt boosted the reputation of the
Kajimbo family. But Ronald still did not smile.
Ronald
Emmanuel

Agnes explained Save One Life to them, and also
that I was a mother of a child with hemophilia. This tidbit also breaks
down barriers instantly. Harriett looked at me with widened eyes now. After the
overview, we did the enrollment forms, starting with January. The enrollment
was easy as there wasn’t much information, and all of it was the same for all
four kids. They all missed an entire term (out of three annually) last year due
to bleeds. School is five miles away, and they often cannot walk the distance. They
can’t afford transportation to take them to school. When they do go to school,
they sometimes get “caned,” beaten with a reed or stick for infractions. This
is old-school British and still acceptable here. January goes to school with
8-year-olds in primary 3, because he is so far behind. This embarrasses him. He
gets no treatment; Mulago Hospital in Kampala is five hours away and requires a
motorbike ride on the rough, unfinished road we just conquered, and then
waiting for a public bus to take to the capital. And it costs $50, while
the family’s monthly income is $15-$30.

Richard
January

We surveyed the house: they have no electricity,
running water, indoor toilet or plumbing, or refrigerator. The floors are
concrete or red packed soil. Cloth doors separate the six rooms and it’s
impossible to stay clean, as dust coats everything. Out back, a brick shed for
cooking, an outhouse, and one rib-showing, starved black and white dog
collapsed in the heat. All the kids—same story. What do they do when not in
school? “Digging in the garden,” which means they do chores: farming, seeding,
harvesting. Harriett is only 29, with six kids, a huge responsibility. Still,
she smiles happily as she takes Joel from me.

Our funding may help the kids get back into
school, or help feed them. We share the butter, rice, sugar and supplies with
Harriett, who is overwhelmed by our generosity. We hand out toys, many of them
simple, donated toys, especially the super-heroes and plastic creatures that have sat
in a basket for two years in my basement. I finally dumped the last of them in
my duffel bag, and now, Ronald holds what looks like a silver Power
Ranger-wannabe in his hands. He is dumbfounded, then catches on, then finally….
Breaks into a huge smile. Boys just love action figures, no matter where they
are.
Emmauel’s knees; all the
boys have joint damage

We go outside and do a line up so I can take
photos. We photograph January’s knee, particularly his prominent scar from surgery,
before he was diagnosed. He reminds me of Mitch from Haiti, who also almost
died from surgery before being diagnosed.

Back inside, January comes out from the back room
with a surprise: a chicken! Agnes laughs and I hold it for a photo opp. They offer the chicken as a token of their appreciation. The poor thing had its legs
trussed up and was hung upside down, then laid on the floor, immobile. Its eyes bulging, fearful, waiting to know its fate: lunch, dinner? Were we to take it back five hours to Kampala like that? I wondered what the Sheraton staff would say if I walked in with a chicken. I had to refuse, even though
this was impolite. Agnes explained to the families that I love animals and could not bear to
see it like this. The lucky chicken was paroled and January took it back outside.

As we prepare to leave, we do a
family picture, with me holding Joel. Harriett comes out of the house, and suddenly drops to her knees before me, and
holds my hand. This is unusual for an adult, I think, and I thank her but also
encourage her to stand up.

The Kajimbo’s kitchen

We are happy when we leave, and once back on
paved ground, we stop at a hotel for lunch, feeding the drivers as well. I don’t
each much, but enjoy a Coke immensely. Agnes and I talk about what can be done
for the family, what their daily life must be like. How much $.73 a day–the cost of a sponsorship from Save One Life, will impact their life. It might be the best thing that will ever happen to them.

Next Sunday’s Blog: Our visit up north to find one family. Please check in next Sunday!
Agnes Kisakye and the Kajimbo boys
My chicken!

Insurance Check Up Time

The return trip from Africa required some 30+ hours in transit, and flying coach on these long trips sometimes leaves me with a very stiff back. Yoga helps, but so does a visit to one of my favorite people, my chiropractor. However, I just received notice from my insurance company that it is only covering 12 visits. Any more and I need referrals, certifications, x-rays, passport, a note from my mother and proof of my existence.

Okay, so I’m kidding–just a little. But seriously, in keeping with the current health expenditure cutting trends by the insurance companies, things are changing rapidly. If I am not careful, do not read the fine print, and keep track of my visits, I could end up with a whopper of a medical bill. This happened to someone I know who also went to her chiropractor, whose office was less than forthcoming about what was and was not covered under her insurance. $1,000 is a lot to be hit with during the holidays.

The end of the year is a good time to review all your insurance policies. Call your insurance company and double-check on any changes for the New Year. You could have changes in co-pays, coverage, and deductibles. Call your human resource department at your place of employment and also check to see what has changed. We are also getting notices from Kevin’s employer about such changes for 2008. Try to stay one step ahead, so you don’t get left behind!

If you need any insurance help or have any questions, call the new toll free Bleeding Disorders Insurance Hotline — 800-520-6154, sponsored by Baxter BioScience. This innovative service is just what we need in these changing times.

Great Book I am Reading: Into Africa: The Epic Adventures of Stanley and Livingstone, by the exceptional writer Martin Dugard. This book tells the true story of the last amazing African exploration of Dr. David Livingstone in the mid-nineteenth century, and is one of my all-time favorites. Livingstone was a Scotsman, physician and missionary, and considered the greatest explorer of his time. Following the upheaval and accusations between fellow British explorers Richard Burton and John Hanning Speake, Livingstone decides to take his last voyage to Africa at the age of 53 to find the true source of the Nile. He encounters hardships and disease, and at his advanced age, is unable to return. He awaits his fate at an African village. Enter Henry Morton Stanley, a shrewd journalist upstart who is out to make a name for himself. As brash and arrogant as Livingstone is humble and tolerant, he sets out to rescue Livingstone and earn world fame. Of course, you know the outcome when they meet: “Dr. Livingstone, I presume?” is one of the world’s most famous questions. But the outcome is far from certain. Read this book for adventure, history and an insight into the minds of two amazing but very different men. Dugard has researched his subjects thoroughly, and most interesting are the descriptions of what these men endured, and how differently they perceive Africans and their respective missions. Four stars!

Why Africa Needs Us

I am planning my next big trip for hemophilia humanitarian work now: Africa. In December I hope to visit Zimbabwe, Kenya and Ghana. I’ve been to Zimbabwe twice before, and Kenya once before. Ghana will be new to me: we started a hemophilia society there last year and I hope to see how it is developing and what help we can offer.

Zimbabwe, as you may know from reading the news, is in dire straits. My program Project SHARE could quite possibly be about the only organization providing factor. As I know many patients there pesonally, I am anxious to return. It may seem like a hopeless case to the world, but when you know people personally, nothing can seem hopeless.

I’ve been wanting to return to Africa since 2001, when I was last there. When I received the email below from my contacts there, I knew it was time to go again. To lose a child when it might have been prevented… it’s a driving incentive to try to solve problems, engage the families, and prevent more loss. This child, Joseph, could have been one of our own sons; but he was born in a country where factor is difficult to procure. He was born just before my last visit, and now is gone, so soon, so suddenly. Read about his case:

Joseph Junior Nyang’wara was born on May 18, 2001 to Ben Onundu and Maureen Miruka. He was their only child. Joseph was diagnosed with hemophilia A, when he was about age one. This condition saw him in and out of hospital on several occasions where he would get replacement clotting factor to stop bleeding. Joseph also had enlarged adenoids that would give him breathing and sleeping problems.

On the April 11, 2007, Joseph had a bleed that led to admission at the Kenyatta National Hospital. He was treated for the bleed and scheduled for surgery to remove his adenoids and tonsils on the 16th April 2007. The surgery, though complicated, was successful and Joseph was discharged from hospital on the April 21, just in time for his child dedication in church on Sunday, April 22. However, on the morning of the 23rd, Joseph developed a bad cough that caused him to bleed. He was taken to the hospital where he was infused with factor. On that same day by afternoon, the bleeding had not stopped. He was taken to MP Shah Hospital and admitted to the ICU to manage the bleeding. It did not stop and it was found that he had developed inhibitors to the clotting factor. The bleeding continued till Wednesday morning, April 25, 2007 when it stopped and there was hope that he had pulled through the worst. But at 2 pm his blood pressure dropped suddenly and he had a cardiac arrest at around 3pm.

The text from his eulogy reads, “Joseph was a very friendly child to both adults and children. He was very prayerful and obedient. He was exceptionally intelligent and as his aunt once said, was a man trapped in a five year old body. Fare thee well, Jose, our guardian angel. Be happy as always and play about in Heaven without any limitation this time. We loved you very much but God loves you more.”

His mother, Maureen, wrote to me in June and said, “I will wait eagerly for you to come and I have made it my resolve to continue to serve others, for Joseph did not go in vain. I therefore look forward to working with you on this front.” Maureen is an inspiration, and potential leader for the Kenya community. If you’d like to help Maureen, and assist in our efforts on Africa, call me at 978-352-7657. For all the boys like Joseph still living, still suffering, there is much we can do.

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