A small taste of life in a wheelchair in Haiti

Yesterday I had the opportunity to spend some time experiencing what life is like in a wheelchair in Haiti.    Maxony and Kenny, two peer educators in the Spinal Cord Injury Program at SBHF, provided me with this unforgettable experience. 

Having been injured in the devastating 2010 earthquake, Maxony and Kenny have been with SBHF's program for over five years.  Initially as patients, now they work for the program as peer educators.  They help patients in our center adjust to the dramatic life-change a spinal cord injury brings, and they support participants in our nation-wide community reintegration program as they fight to live with a spinal cord injury (SCI) in Haiti.  Which as I experienced first hand, is no easy task.  

My time in a wheelchair started by meeting Maxony and Kenny at our SCI Center.  The two of them arrived by getting pulled by a motorcycle taxi to get up to the center.  First things first, we found a wheelchair for me to use. And just like you would do when taking a bicycle out that hasn't been rode in a while, we ensured it was ready to ride.  We checked the tires for air, ensured the brakes worked, and tested in the center before heading into town.  Once ready to go, we left the comfort of the SCI center, where nearly everything is flat and wheelchair-accessible, and headed into town.  Even just leaving the hospital grounds made for a challenge. In order to get from the SCI Center to the main road in front of the hospital, we had to traverse down short dirt road, full of bumps, rocks and tree roots.  Luckily for me, and Maxony and Kenny for that matter, the "main road," which unlike many rural towns in Haiti, was paved.  

Maxony and Kenny zoomed their way down the slight decline, while I was still figuring out how to keep my wheelchair in control, go straight, avoid rocks, and maneuver over speed bumps and depressions in the road.  Going downhill proved to be challenging, as the only way to slow yourself down is to tighten your grip on the rim designed to propel, and as I found out, slow-down the wheelchair.

Going uphill wasn't easy either.  During my orientation for the wheelchair use, Maxony had instructed me to make sure I leaned forward when going up-hill.  Just like hiking, I thought.  Which it was.  However, I never realized how easy it was to tip back in a wheelchair.  This advice became extremely important when trying to go up the ramp to Maxony's and Kenny's house.  The first part of the ramp didn't seem that steep, but in a wheelchair, it was extremely challenging.  After two attempts, one almost catapulting me out of the chair, I got a helping hand from a community member who pushed me to an easier section.  

Visiting their house reminded me that nearly every task they do requires an extra effort.  Opening doors, going to the bathroom, showering, getting water, and more.  All tasks magnified by living in a section of rural Haiti where there is no electricity and no running water.  

After the house visit we headed to the market area where there are always townspeople hanging around.  To leave their house to go to the market, we had to take a different route because the ramp we came up was too steep to descend safely and they only do it when the rain makes the alternative route impassible. (See part of the alternative route in the video below.)  Once in town, there were certainly more stares than I am used to getting in Haiti.  As a person with white skin in rural Haiti, people often have their eyes on you.  However, this felt different.  I don't know if it was me or them, but it felt like I was getting different types of stares.  The townspeople are used to having people traversing in wheelchairs, but I am not sure if they had ever seen a person with white skin in a wheelchair before.  And whether it was good or bad curiosity, it certainly made me realize I was in a different physical position than them...I was in a wheelchair.

After the visit to the market area, we made our way back to the SCI center.  A walk that normally takes me 10 mins by taking the shortcut, took at least 30 mins.  Partly because of the longer route needed to take due to the wheelchair and largely in part because of the difficulty in going up the slight hill in a wheelchair.  

In the end, it was a small adventure for me.  As a whole, eye opening and physically challenging.  But the most difficult part was not the physical challenge of getting around town.  The most difficult moment was when I got out of the wheelchair, and Maxony and Kenny could not, and will not be able to get out of the wheelchair.

Bienvenue à Fond-des-Blancs, Haiti

my new office

This past week I said goodbye to my coworkers and friends at CCH in Jacmel and moved to Fond-des-Blancs to start my work with St. Boniface Haiti Foundation (SBHF) as the program coordinator for their Spinal Cord Injury Program.  

Starting anew has been surprisingly challenging.  While I am still in my familiar Haiti, I have been reminded of how much moving to a town, working with a new organization, and having different living conditions can disrupt one's rhythm...or mine in particular.  New schedule.  New friends.  New coworkers.  New responsibilities.  New challenges.  New opportunities.

However, as I settle-in to my new work and new routine, I am getting more and more inspired by the amazing service SBHF's Spinal Cord Injury Program provides to the people in Haiti.

No matter where you live, living with a spinal cord injury is difficult.  The most basic travel must be done in a wheelchair.  Self-care and body maintenance is of the utmost importance.  And every day, there are numerous obstacles one encounters.  In a developing country like Haiti, where good roads are hard to come by, the idea of "handicap accessible" is nearly non-existent, and daily life is a struggle for the healthiest of people, living with a spinal cord injury is beyond challenging.


Over the past five years, SBHF has been dedicated to meeting this challenge.  Adding to their 30 years of experience in Haiti, SBHF works to provide needed care to spinal cord injury patients in Haiti, many of whom were injured in the devastating earthquake in 2010.  Since that time, they have become a leader in providing care to these people in need, housing one of only two such programs in the entire country. This is why I am so grateful to be able to contribute to SBHF's efforts to support these people in need in Haiti.  While the need is great and the challenges are many, I know we will do our best to provide these people who have sustained spinal cord injuries with the best possible care and life-outcomes.

Little by little, we will help ensure that no matter where someone is born, they will have an equal opportunity to live a healthy and prosperous life.

a small hand-painted rock,
welcoming gift from one of the patients

On my mind: Reflections after a year in Haiti

As I wrap up my time with Community Coalition for Haiti (CCH), I am finding it somewhat challenging to leave.  There is so much work to be done.  It is difficult to leave people who I have come to know so well.  I have some anxiety about moving to a new place and starting a new job.  But amidst all of this, as I reflect on the past year and look forward to the future, three things keep popping into my head.

One.  This past year has been a remarkable experience.  I have seen, done, and learned so much.  I have been fortunate to contribute to the life-changing work that CCH does.  We have saved lives, lost lives, and changed lives through the power of healthcare, education and community development.  I am proud to have been a part of their good work.

Two.  I am really excited to contribute to improving the lives of people in need in Haiti in a new way by working with St. Boniface Haiti Foundation (SBHF), coordinating their efforts to holistically care for people sustaining spinal cord injuries.  

Three.  With All of this running through my head, I can't stop being reminded of Badjhon.  The journey he has been on , the pain he has endured, the hurdles he must still overcome.  I am so grateful to everyone who made his life-changing surgery possible: CCH, doctors from Salve Vida, Project Medishare, Partners In Health.  Badjhon, like so many people in Haiti, has already overcome so much adversity.  Yet, there are still many obstacles in his and Haiti's way.  Much left to be done to ensure Badjhon, the people in Haiti, and people all over the world have an equal opportunity to live a healthy and prosperous life.   At times, this seems impossible, yet I am confident we can achieve this lofty goal.  I am confident that with support from people who care, everyday people like you and I, we can get there.  

Whether it be in Haiti, the United States, or other parts of the world, I ask and urge you to support efforts to help people in need.  Become aware, get involved, and support causes in smart ways.  Support organizations helping in sustainable ways to empower communities in need.  Share your time, your money, your talents.  No matter what you do, do something.

If you are not sure where to start, make a donation to CCH to help ensure that the same life-changing surgery that was provided to Badjhon can be provided to other children just like him.  Remember, every donation counts.  Every effort gets us one step closer to a place where everyone can have an equal opportunity to live a healthy and prosperous life.

Little by little, we can get there…piti piti swazo fe niche.

Where do I begin? Recapping my past two months in Haiti

Over the past two months I have seen and done so much. Kanaval. The Citadel. Cap Haitian. The Bahamas. The Dominican Republic.  Four surgical groups.

Jacmel Carnival, aka "Kanaval"

Haiti's pride, the Citadel

Cabo Rojo, Dominican Republic

snapshot of the OR

Many times these experiences can be an emotional roller coaster.  The beauty in our world.  The needs in our world.  Highs of helping people with surgery. Lows of telling someone we cannot help them.  I feel like I could write a book about everything I have seen and done in the past two months - I can't believe it's only been that long since my last blog post.

But out of everything that has happened over the past two months, one event stands out to me the most - surgery for the boy from Marmont.

Some of you may know him personally.  Some of you may know his story, having read my first blogpost about him (Excitement. Disappointment. Glimmer of Hope) and the highs and lows I have experienced with him.   Well, I have some good news to report. After over a year of searching for proper treatment for him.  After 10 years of not receiving any or adequate care, Badjhon had surgery to correct the club foot deformity in his left foot.  

For the amazing surgery team from Salva Vida partnering with the organization I work for, Community Coalition for Haiti, and for our staff, it was one surgical case during another week of life-changing surgeries.  But this time, I was one of the lives that was changed.  To Badjhon and his mother, to me and others who know him, it was such a monumental event. 

When I first met Badjhon in January of 2014, he came into our clinic, being carried by his mother.  He was nine years old.  Up until that point in his life, the only way he could get around was by crawling on his hands and knees or by being carried around by his mother.  My team and I had not seen or treated patients like him before, but after some brainstorming and creative thinking, we were able to get him walking with crutches...it was the first time in his life that he had stood and walked by himself.  It was an amazing experience.

However, that was the limit of what we were able to do for him.  While he was now able to walk short distances with the crutches, he still had his major deformities that prevented him from walking, prevented him from putting on shoes, and prevented him from being able to go to school.  So I set out to find him the treatment he needed.  

I shared his case with various doctors in the USA and non-profit organizations in Haiti.  We learned that corrective surgery could be done.  Many people said they might be able to help, but nothing ever came of it.  We found someone to do it, only for them not to show up.  Leaving us with the uncertainty of if and when he would be able to have the corrective surgery performed.  There was very little hope.

Then came the group of orthopedic physicians from Salva Vida, who said they could do the surgery. 

Unlike the first plan for surgery, this time the doctors showed up.  They performed the surgery and were able to correct the club foot deformity in Badjhon's left foot.  This will give him the ability to stand up straight.  It will enable him to walk for longer distances with his crutches.  It will give him the ability to put on a normal pair of shoes.  It will enable him to go to school.

However, this will not come easy.  While the plan is certainly doable, there are still many obstacles to overcome.  We have gotten over the largest hurdle of having the surgery performed.   However, having major reconstructive, orthopedic surgery like this is no easy process - even if you are in a developed country.  Do it in a low-resource environment like Haiti and it magnifies the difficulty of the recovery.

After the surgery, Badjhon recovered at our medical center for two days before having to head back to his hometown, six hours away.  Fortunately, he would not have to take the public bus transportation all of the way as I was heading to Port Au Prince and was able to provide him with a ride to the bus station there.  Cutting his trip on public transportation in half.  However, this was not an easy trip for Badjhon.  Only being two days post-op, he was still experiencing pain during the drive to PAP.  When we got to the bus station, he was in obvious discomfort and was crying and in pain.  When we put him on the bus to his hometown, which is a 12 passenger van, it was borderline chaotic.  He was only in his underwear and his t-shirt.  His mother didn't have much money to feed them for the day, let alone pay for the bus ride.  Which I had to lend her two dollars to help cover the higher-than-expected cost.  To top it all off, Badjhon had to pee.  Having to do so in a plastic bottle right there on the bus, in front of everyone.  He was crying, his six month old baby brother was crying, and on the inside, I was crying too.

It was a horrible thing to see and experience.  I didn't like it.  I didn't like seeing him that way.  But I knew it was for the better.  That the pain and discomfort were temporary and that in the long run, he would be better off.

But the story doesn't end there.  

The cast Badjhon currently has on has to be removed.  After that, he has to have another cast put on.  After that he needs to do physical therapy.  Where he lives, he does not have direct access to this level of care.  Hopefully, he will be able to find the care he needs at a hospital that is only an hour away.  But it might require him to make the three hour trip to PAP, or to make the six hour trip to return to Jacmel.

I am not sure exactly where he will get the next step in his care, but I will be sure to make it happen.

Just another day in Haiti

Today was just another day in Haiti. 

Cross town search for a phone. Student protest.  Being offered coconuts.  I didn't think much about it, because to the people who live here, it was just another day in Haiti.  But to those not fortunate enough to experience a day in Haiti, I want to give a glimpse of what a day can be like down here.

photo: www.digiceltt.com

This morning, a coworker and myself set out to get a phone for the clinic.  Here in Jacmel, as in most of Haiti, we don't have land lines.  We were going to the cell phone company store, Digicel, in search of a "cellular phone" that imitates a land line phone. My coworker had called ahead to one store location, store #1, to see if they had the type of phone we wanted - they did not, and told us to go to a different store, store # 2.  When we went to store # 2, we were told that they did not have the phone and we had to go to store #1 - the store we had first called.  We were hesitant, but we went anyways.  ...They didn't have the phone. But they said we could find it at a different store, store #3.  So we went to store #3.  Which, in order to find, required a walk through the busy public market.  And yes, you guessed it, they didn't have the phone either.  

This is Haiti.

photo: www.haitian-truth.org

So we had to settle for buying a pay-as-you-go sim card (the only cell phone plan available here) for 50 gde (~$1 US).  Then we went to our guest house where we retrieved the old "Haitian phone" I had so that we could use the new sim card in it to call our patients.  But en route to our guest house, we were held at a stand still for about 10 minutes as a group of 2,000 - 4,000 student protestors were marching in the street.  "Demonstrations" or "manifestations" as they refer to them here are very common. This one happened to be about the lack of teachers in the public school to teach the kids.  A lack of teachers because the teachers have not being paid.  This is Haiti.

None of this seemed to phase me much, as people who live here know, This is Haiti. 

    jiwadamaibali.wordpress.com

However, I was taken aback by something that happened to me in the afternoon. I was out with our director and two other staff members looking at potential property for our organization.  After the owner showed us the property, he asked if we wanted coconuts to drink.  We politely said no.  He asked again, and we generously declined again.  And as we were leaving he jokingly, yet seriously, said that he wasn't happy with us because we didn't want to drink any coconut water.  So we finally gave in and took him up on his request.  Immediately, one of his guys proceeded to climb the coconut tree - barefoot with nothing to help him but a machete to cut down the coconuts.  Making sure to cut down enough for everyone there to drink - myself, our staff members, himself, and his family members.  It really was a great moment. It was something that could only be explained as, This is Haiti.

T.I.H. ...This Is Haiti

Last week, a new friend of mine named Gwenn used the phrase...T.I.H., This Is Haiti.  Gwenn has lived here in Haiti for the past six years with her husband and three children, and they have learned to use this phrase to highlight the unique events that can happen here.  In this case, it happened to be the crazy sequence of events that occurred during the marathon held here in Jacmel (stories to come soon).  A sequence of events that could best be summed up by saying, T.I.H.  ...This Is Haiti.

I found this phrase particularly catchy.  After only hearing it once the other weekend, I realized it stuck with me.

This past weekend when I was visiting an area called Port Salut, I realized I kept thinking...T.I.H..  Not because there were crazy events happening around me, but quite the opposite.  I was continuously awestruck by the beauty of the area I was in.  I kept saying to myself, wow, This is Haiti.  

And while there are certainly many needs here, I want to make sure that people also get to hear about the beauty of Haiti.  To see and to realize that, This is Haiti too.

cave in Port a Piment...This Is Haiti

entering the cave....T.I.H.

stalactites and stalagmites in the cave....This Is Haiti

inside the cave....T.I.H.

old sign in the cave....This is Haiti

climbing in the cave....T.I.H.

beach at Pointe-Sable...This is Haiti

more white-sand beach....T.I.H.

sunset at the beach....This is Haiti

statue commemorating the "battle" against cholera....T.I.H.

Notre Dame cathedral in Les Cayes...This is Haiti

T.I.H....This is Haiti