Her name is Máxima. It means ‘she who is big’, and although the meaning of her name doesn’t at all fit her physical stature – more thin and fragile than anything else – there’s no more apt description of her spirit. A spirit she says has been gifted by a loving and merciful God. A spirit so big and so strong it’s existence can only have been forged in the unique fires of tremendous pain, suffering, perspective, and faith. I’ve never met anyone else like her.
Máxima, the perfect name.
After a 30 minute ride I hop off the crowded city bus as it comes to a rolling stop before quickly taking off again, leaving a cloud of dust and black smoke in its wake. I’ve arrived in a notorious part of the city of Guayaquil, La Entrada de la Ocho, a name synonymous with poverty, drugs, and crime. Life in places like this goes on, as it does everywhere else, with people trying to make a living and survive, but everything is a little more intense. People packed in closer together, everyone walking around with an acute sense of life’s volatility, an understanding that if you let your guard down ever so slightly something could happen. The routine is worked into people’s natural movements, but it’s still there: eyes always on a swivel, looking every passerby up and down trying to assess the risk they potentially pose, belongings gripped a little tighter, children’s hands never let go. No one here has the luxury of living care-free.
I step into the back of a trici-moto, Ecuador’s version of the tuk tuk, and pay the driver 25₵ to take me to the very end, past where the cement road ends and the mud begins, as he dodges giant puddles from the storm the night before. I get off as far as he’ll take me and walk the rest of the way, navigating the narrow path between the homes, a mix of cement blocks, wood, and bamboo until I get to the house I’ve come to recognize.
I open the makeshift gate and let myself in and go to the back room. There’s only one person here and she’s in a great deal of pain. I can hear her groans from outside the room. It’s Máxima. Her brother, whose house this is, and his family, in their own daily struggle for survival have had to leave her by herself until they all return from selling cocada, a homemade coconut and sugar cane desert they sell on the street, later in the evening.
The loneliness of the sick is something far beyond the comprehension of the healthy.
As my eyes adjust to the darkness of the room I see Máxima in her bed, writhing in pain, the sheets soaked in sweat and tears. Her groans and cries are loud and although it’s not the first time I’ve seen her like this, I can’t stop my heart from feeling constricted in my chest.
Sickle-cell anemia. It’s a terrible, incurable, disease.
39-year-old Máxima has had it since she was born. It’s a defect in her red blood cells that kills them off early, leaving the system depleted and making the cells that survive jagged instead of smooth so that when they pass through her blood stream they cause extreme pain. She’s described it as feeling like her bones are shattering. The pain oscillates between varying degrees of severity, the worst leading to scenes like the one I encounter her in now, but it never leaves completely. Even on good days, when there are no flare-ups and Máxima’s able to get up and walk around, the pain is there, a constant reminder of her inescapable reality.
The pain has become foundational to her person but not in the sense that it’s the pain that defines who she is. No, rather, true to her name, it’s Máxima’s inspirational response to the pain she has suffered every day since birth that has truly defined her and left the lives of so many, myself included, profoundly impacted.
As I walked into her darkened room with medicine in hand that would go on to alleviate her current state, at least for the time being, she looked up and in between groans, her voice full of sincerity, said: “Carlos, thanks so much for coming. How are you?”
How am I? The sincerity of her question, in that moment, made me buckle onto the bed beside her.
And therein lies the power of Máxima’s response: harnessing her own pain, circumstances, and faith to bless, encourage, and inspire those around her; sometimes unwittingly, sure, but that’s exactly what happens when something is foundational to your being: it shines without you having to deliberately strike the match each time to light it.
Máxima has become, over the years, quite well known in the public hospital in the south of Guayaquil where she gets her treatment. Walking through the halls with her is like taking a guided tour, so well she knows the layout and so many of the doctors by name; doctors who despite their busyness and often aloof attitude, smile when they see her and often come over to say hello. She’s spent almost as much time there as some of them have.
Her reputation is formidable, even among other patients who also spend a lot of time in the hospital. Little communities can really form anywhere, can’t they?
Máxima from Esmeraldas. Coming from so far away often by herself. They all marvel at her strength and determination. And rightfully so. I’ve written about the difficulties of accessing health care for people who live along the river before. From the village of Santo Domingo, Máxima has to take a 4 hour canoe ride to the town of Borbón where she then takes a 12 hour overnight bus ride to Guayaquil. The trip is arduous even for healthy travellers.
With funds raised through the Onzole River Project, we’re able to ensure she gets her treatment and any additional medication as needed, which means making a trip to the specialists in Guayaquil every couple of months. But before we were able to come alongside her, Máxima would sometimes go as much as 8 months between visits, waiting till the pain was absolutely unbearable, allowing her family to save as much money as possible to make the trip, and the payment of all related expenses, such as new pints of blood for transfusions and other medication, even possible.
Being sick is not easy; much less so when you come from up the Onzole River.
And so her reputation is well deserved.
Doctors and patients alike have regularly expressed their admiration of her. I have heard them say that knowing her, and the details of her story and her struggle and her response, has inspired them in their own times of struggle and pain. A reminder of what is possible with strength and faith.
“I’ve never been angry at God,” Máxima once told me. “I don’t know why I have to suffer with this illness and I really wish I didn’t have to, but at the same time I have a deep faith in God’s love for me and I have never felt abandoned by him, even in times where I’ve thought I was going to die. Many people have told me over the years that if it was them in my shoes they would have killed themselves long ago rather than suffer through everything I’ve suffered. I’ve even had doctors tell me that. But I’ve never thought that, not even for a second. God has given me strength to bear this burden in a way that has so often inspired others to keep going on in their fights so I see that and think that that could be why I have this illness: because I’m strong enough to bear it and can inspire others and help them see God’s love through their struggle too.”
She told me this sitting in a hospital bed, wrapped up in the thin, hospital provided, sheet, her head resting on her purse because their wasn’t enough pillows to go around.
I’m not sure a richer theology, so grounded in the pain of reality exists, and I’m not sure something has impacted my faith life as much as listening to Máxima express those sentiments and then seeing them play out in real life, time after time.
I admire her beyond what simple words can express and feel a tremendous privilege in sharing a deep friendship with her and being able to do whatever I can in support of her life.
I am committed to continue to do whatever I can to ensure that she receives the treatment she needs when she needs it so that the light of who she is can continue to shine bright for all those who need to see it, myself included.
Her name is Máxima. I pray for her and I pray she inspires us all.
If you would like to be a part of The Onzole River Project’s efforts in coming alongside and supporting people like Máxima and the communities they come from, please consider making a financial contribution through our mother organization: The Navigators, and receive a tax receipt for any amount given:
Thank you for your generosity in helping us ensure people like Máxima continue to receive the support they need and deserve!