Some thoughts remain like shadows, creeping till sane things become insane, even as you retain, all that keeps you sane. These days some thoughts have been persistent, attacking like cancer, as if life has no hope, wanting instead to leave one helpless, as if on a downward slope to all things inferior. These days too, I choose thoughts that leave me breathless, those that keep me restless, as if life can be extraordinary, as if dreams can be revolutionary, like the momentary madness of falling leaves, or the luminary visions of orange trees, and all things superior, all things possible. I am in a place surrounded by falling leaves. Surrounded too by thoughts that keep me falling deep. Something about Fall and leaves, and visions and dreams, keeps thoughts that never leave, like ending cancer now.
The changing colors of leaves every Fall season is a sight worthy of inspiration. They agree with me.
I got some news that helped to crystallize why I do what I do. They say never write grants that keep you so passionate to do extraordinary work. But passion is all I have and these days I am in a space where I only want to do work that keeps me advocating for people. I also know the road ahead is daunting. Cancer is a very tough task to take on. But I’m all in for all things and the moonshot goals to end it as we know it. I am also ready to do the impossible, do things sustainable and equitable so that we prevent unnecessary illness and death. Every Fall season, I am amazed by the changing colors of leaves. They do the impossible in a necessary way and keep me motivated to do so to. I am in a phase where Fall and the changing colors of leaves agree with me. They keep me inspired.
When a woman dies, and her cervix is to blame, catapulting her from the prime of her life, to her grave, what remains as a witness to her life, her stories, her cervix, her silenced voice? Who will resuscitate a life cut down by cervix?
Still sitting here contemplating why women die from cervical cancer? Image from Lucille Clifton.
As I watch my life story slowly change, with cervical cancer elimination, our next attempt at putting the public first in public health, so many questions remain. I look forward to all the struggles and hope ahead on this journey.
Everything changes, the moment you hear the word. Life flashes through in a second. None of us can cheat life. None can escape the battle of death. I have tried to understand 2021. Fast runners never win their race. A fish still gets caught in a net. No matter how hard I tried, I still can’t understand. Why cancer? Why us? Our fists are clenched.
Grief is love unexpressed. I learnt that today watching an Instagram video of Andrew Garfield as he talked about the passing of his mom. To him, grief is a beautiful thing. Grief is also unexpressed love. He hoped his grief will remain with him as he never got time to express all the love even though he expressed it all the time. So he hoped that this grief stays with him for as long as he lives. Listening to him got me thinking about my summer of grief with Angie’s passing. All that I wrote, both those shared and unshared are all the unexpressed love I had for her. I can still hear her voice. I still hear her calling my name and I miss talking to her terribly. His message also came at the right time.
We cut down a tree in front of our home early this month. It was an Oak tree and it’s roots were buried deeply into the ground. We cut it down because there was a hole the size of a soccer ball at the bottom of the tree. On the outside the tree still seemed to have life and some leaves, but internally it was rotten to its core. Rather than waiting for the day it decided to fall, we felt it was time to let it rest, hence the decision to cut it down. About five men came together to do the job. This was a huge tree and they spent hours cutting down one branch after another, until they got to the bottom and brought the entire tree down. We watched from afar, mesmerized as something so large came down back to the earth.
The day before Thanksgiving, we planted a new tree near the spot where the old tree came down. It was a gift to my husband from his coworkers for the death of his sister, our dearest Angie. I called back in October to let the company know the type of trees we would love. They recommended a tree whose name I cannot remember but promised its leaves would be red in the fall. I accepted and agreed to their selection. He noted they would come in November to plant the tree as this Fall is typically the best time to plant trees. He noted they would go to sleep anyways and wake up in time during spring. On Wednesday, our sleepy tree arrived. As we watched them dig deep into the earth, I realize just what I am truly thankful for this year. Life and Grief.
We are all sleepy beings passing through the earth, one life at a time. One tree at a time. Every tree we plant, every root we bury deep into the earth, is life worth roaring for. Life worth grieving for too. Every root is set firmly in place and cannot be moved. Every grief too is love unexpressed and cannot be disapproved. I approve this grief, just as I approve your ability to live your life in your own way. Everything glorious and majestic surrounds us when we are rooted deep into the earth. Everyone of us is protected, not oppressed when we are rooted in life, in grief, in God. This is grief at its finest, rooted deeply in us when we rethink its core. It is truly love unexpressed, a beautiful thing that I hope will remain with us just like this tree we planted in Angie’s memory. Keep the power of unexpressed love with grief.
I presented at the 2021 AORTIC Cancer research in Africa. There was a pre-conference the past two days and I was asked to lead this morning with a discussion on why implementation science research for cancer in Africa. What many people do not know was that the invitation which came July 12, came exactly one month before my sister in law passed August 12. I took it as her parting gift. She knows I love to talk. She also knows that I do research, implementation science research in Africa. But I have never done Cancer work. Never even felt it was my place to do so until her cervical cancer came knocking at our door steps. The preparation for the presentation has been one giant healing process for me. I literally wrote poetry, yea or maybe verses on ways to disseminate cervical cancer research using her experience as an entry point. I was so tempted to do so at the presentation that I opted out last minute. Not because I don’t think they were great and I will publish them here one day, but more because ours is still a very conservative field and the idea of decolonizing how we present research or even saying anything anti racism scares people, though I am working on verses for research. But I digress. For now, here is the standard presentation I gave and yes, I gave it in her memory as stories still, to help guide those who want to fight like hell so we don’t have to tell anymore stories like Angie’s.
I know we have heard a lot about implementation science the past couple of days, with a lot of talks about what it is and how to do, but let me paint another picture if I may of why this matter for the region.
So I am an implementation researcher, interested in how you sustain evidence-based interventions in resource-limited settings.
I am also a storyteller.
I grew up in Lagos, Nigeria, with a show called Tales by moonlight which is similar to what griots do in many other African settings, and so stories are all I know, and it was refreshing to hear Dr, Eche tell his implementation story these past few days. I think we heard yesterday for example, that policymakers respond to data, I agree.
As someone who used to work in the UN, I would also add that policymakers respond to stories, especially stories about data, stories about what works or doesn’t work, even stories about the constituents they serve. So let me tell you a story If I may of why implementation science matters for cancer research in Africa
And I want to begin from with the story of Angie. Angie, a 53-year-old woman, as is typical in most African countries, presented in the clinic with stage 4 cervical cancer.
There were no warning signs, or least when she saw some, she didn’t take it seriously. She never had pap smear in her life until she presented. She didn’t even have any access to universal health care insurance.
Only reason she presented actually, was because she couldn’t eat anymore, and felt something was obstructing her ability to eat, and was seeing blood in her stool. Angie’s story is typical in many African settings, and in particular for understanding why context matters for implementation science cancer research in the sub-Saharan Africa.
And to illustrate that a bit, I allow me to use some analogies. In our settings, analogies are like proverbs, they are like miniature tales, building blocks if you like in simple form of ways that the field can proceed.
This recent paper by Haines in implementation science describes context as a fabric. A blue fabric in this case, and just as embroiderers must first understand the fabric they are working with, researchers and practitioners of implementation science must obtain an understanding of the context in which they work in before selecting or adapting an intervention or any implementation strategy.
The red needle in this case represents the implementation strategies and thread is the intervention you may have in mind, and all of that have to be in harmony with the context in which you find yourself in.
I really like this paper, but let me address context in another way. Enter Yucca which many of us in Africa, may know as Cassava.
But if you traveled to South America, it is called yucca and it is used to make empanada, yucca fritters or yucca chips. Now this same tuber, if you come to my home country of Nigeria, can be found in local dishes such as Abacha, or what the Igbos’s call African salad, or eba and soup, eba being a typical Yoruba dish, or quite simply garri and groundnut, something we all eat in Nigeria as a favorite meal.
I use Yucca and Cassava here to illustrate again context matters. It the same tuber, but if you went to South America, its used differently, if you come to Nigeria, even within one country, it is also used differently. Context, like all the stories we will tell with implementation science it matters.
Another reason why context matters is that, the past couple of days was spent on ideas of what works with implementations, the how to do it literature of implementation science, and to all of that I want to add one thing that was missing and is this idea of starting with Why. And So for implementation science in the region, always start with why.
And if we stayed with cervical cancer, Remember to start with why for something so preventable and treatable, Remember to start with why for something where one in four women will die, unless they have access to life saving evidence-based therapies that exisit. Remember to start with why with resolutions that exist, the historic 90-70-90 resolution last year for example which calls the 194 member states of the World Health Organization (WHO) to achieve specific targets by 2030. Resolutions like this are actually fertile grounds and justification for implementation science in the region.And when you start with Why, you will find out that implementation science is an open and inclusive field that basically means workings not only within the context you find yourself in, but also broadening your collaborators, to include working with multiple experts and non-experts that you can work with to expand the field.
And as you do, as you pick out which outcomes, or frameworks or strategies you will use, be prepared to optimize them for your context. Many of them will not fit ERIC, storytelling isn’t in ERIC as an implementation strategy and that’s ok.
I say go for what works for you, let all that was shared these past few days be a guide, so long as you remember your why and that your context matters. This is the time to begin to galvanize efforts to decolonize even all we know with implementation science and just because it has been done in the West doesn’t meant it has to be in your setting.
In addition, and if we stay with decolonizing the field, also maintain what you know works in your setting, in your context.
You live there, so you know it better than any expert that may come to your setting. So harness that knowledge, it is just as vital as whatever knowledge you will bring from IS to your context.
And finally, be prepared to evolve. Change is evitable, CoVID 19 being a great example Of the need for example to embrace disruptions. Embrace whatever struggles you come across as you evolve. That and be open to other ideas, like the idea of health or implementation science occurring beyond a Western Paradigm.
Professor Collins Airhihenbuwa, my mentor, over 30 years ago, developed a framework called the PEN-3 cultural model, which helps to situate some of the work many of us do in the region, and it asks that we begin always by interrogating what is positive about our context, what is existential or unique about where we find ourselves, and then ultimately what are the hurdles, or challenges to be mindful of along the way, and for me the past few days of listening in, has allowed me to see first-hand, that the leadership within Aortic, in fact all they have done with setting up this conference, is the right start for tackling cancer research in the region.
I wholeheartedly believe that AORTIC is going to be a great resource and leader for anyone in the region try to navigate the rugged complexity landscapes of doing implementation science research in the Africa. And the stories we will tell, for example with the Aortic implementation science special interest group will be the escort that propels the field forward in the region. It’s your story that will convey all our gains, all our failures, and all we hold dear, or should condemn or de-implement for example with implementation science in the region.
So finally as you think through context, one thing I want to emphasize is that we all get into the habit of doing is rapid cycles of what will work or not work in our setting. Some of the speakers, Donna Shelley for example, talked about rapid cycle evaluations. The response to the COVID pandemic has been one massive rapid cycle evaluation, that I believe everyone trying to do work in the region should seize upon because the tools for cancer, whether with prevention or treatment exists and have been in existence for decades yet they continue to remain out of reach to the people who need it the most.
This idea of making a plan, then doing, then studying, then acting, or making another plan will do the field well and help save lives now. If you choose to move in this direction, let me stay in the issue of just planning and tie it squarely to the issue of sustainability. I believe that it is unethical for people to implement interventions in regions with limited resources without even a simple plan on how you last.
Most of the research you will come across implemented in the region, are never sustained. This paper for example by Johnson et al on NIH R01 grants in general with an implementation science focus found that none had plans to last.
We found the same thing in a systematic review I led, about 5 years ago about the sustainability of research in the region. We also noted that if you are going to come do any implementation science work in the region, the least you can do is plan to last.
It should not be done in the end, not even in the begin, but throughout the lifecycle of whatever interventions you have in mind. Having a plan, can be as simple as gathering the right stakeholders to work with, learning from them, be willing to change or adapt along the way, while nurturing what truly matters in within the context in which you find yourself.
And so in recap, I loudly and enthusiastically appeal to the group to come do implementation science work in the region particularly with cancer, and as you do, with whatever frameworks or strategies you use, plan, plan, plan to last.
Thank you to the organizers of this conference for allowing me to speak, Drs. Odedina, Alaro, Bello, I thank you for the invitation. Your invitation came at a time when my family was dealing with the stage 4 cervical cancer burden of Angie my Sister in-law. We lost her to cervical cancer this past August 12th. But I give this presentation in her memory for the many other Angies we all have to fight like hell for, so they live, in a region where context matters. Implementation science needs more storytellers and I hope that AORTIC works to cultivate the next generation of storytellers truly making a difference in word and deed for cancer research in the region.
Maybe we should have talked more often. I should have asked more questions too. Not just hello, or how are you or Ke maka Di gi, or Chekwube? But have you checked your cervix lately? When was the last time you checked? Did you collect the sample by your self? What did the results say? Why are you still bleeding then? Fibroids will not cause you to bleed this long. Treatments are deficient, I know, but what did the doctor say? It’s a developing country and cancer is a death sentence. Maybe, just maybe if I had asked these questions always, all the time, then maybe Angie would still be here. We would have found out early. Angie, would still be calling me, my name, Osodieme. Check your cervix, for Angie. For me.
Mama returned home today. About two months after the greatest heart-wrenching ordeal, the longest mutterings of sorrow, of hearts completely in despair. Our hearts are still broken, still shattered in pieces. But seeing the glimmer in her eyes, made it clear; we would get through this deepest darkness. And the darkness is so deep, still so raw, and still so full of pain, as if we lost Angie yesterday. Nothing will ever change all we know. That Angie should be here. That her death shouldn’t be. That her living is all we know, all we hoped for, all we still long for. To know death, is to know a longing that time still can’t heal.
We’ve contemplated why her fire dimmed, asked how we missed the signs, wondered when we will ever meet. I still have plenty unanswered questions for her. The valleys of our pain, to feel it, to know this emptiness skillfully threading around our edges, is to know the bottom of a well, so deep, so hollow.
We know there is light above. We see it, feel it even, but here in this darkness lies our pain, our sorrow for a life gone too soon. They call it cancer, we call it, a dying sun, contemplating even why a sun dies too. We are still in mourning, burning with passion for a new morning, one where we will gloriously lift our selves from this sorrow. Lotanna made a card, to welcome mama home. She decorated it with pink crinkled paper flowers and blue ribbons. It made mama smile. We are all sorry about Angie. We all welcomed mama home.
‘Bear in mind, that death is a drum,’ notes Langston Hughes in his poetry entitled ‘Drum.’ To him, it beats forever, until we answer it’s call. The call is not for the dead, but those living. Death is a drum calling those living to come. I can hear it’s pulsating beat. It thuds louder on days like today. Emotions are high. Hearts are broken. Everything seems surreal. As the drum keeps beating. She lies in state. We look in a daze. This is truly not a dream. And the drum keeps beating. Mama is crying. No mother should bear this loss. Still the drum keeps beating. We feel helpless. Hopeless too. For a life gone so soon. Yet the drum keeps beating. Death is truly a drum. Calling those living to come. Come as you are. For life itself is nothing, nowhere. Cancer too, may have won this round. As the drum keeps beating. We look for signals. There is none. So we watch. As they start to lower her down. The drum beats louder now. We watch till the last call. The last sands fall. As we all heed the call. Of a drum that keeps beating. We are breathless. Speechless too. There is no air. All seems lost, even time, and a day. Still, the drum keeps beating. We beat Angie’s drum, louder today, keeping Langston in mind. Beating this drum forever. As we too now bear in mind, that death is indeed a drum.
The outpouring of love for a live gone too soon is love. To bask in the thoughts and prayers of so many is love. To bid our Angel farewell, for a life gone to soon, but lived full, is love. To see tears streaming from eyes hungry for you, is love. To hear whispers of songs, sang in one accord, till we meet again, is love. To share in your life story, your dreams of yesterday and hopes for tomorrow is love. We are been engulfed in a bitter sorrow, for your life, for the sun set too soon, but now, our spirits are full of love. You lived your best race. Marching your love, like fire over our hearts. We are basking in your warm embrace. Though, now we say goodbye, truly we pray you sleep well till we meet again.
There was a 90 year old woman, I came across, unafraid to die. She had lived life on her terms. She wanted no heroic measures. Only to go meet her maker in peace. She even had a green folder full of information in preparation for whenever she became unable to make decisions on her own. Listening to this story made me stunned. To live to be 90 is a stellar feat. To prepare to die, your own way, is equally sterling. I paused to reflect on my own life upon hearing her story. The mystery of life is that our tomorrows are never our own. Today too is a privilege. What then would it take to prepare, not at 90, but everyday? And while preparing, how am I living?
We begin this weekend entering a very solemn week in my family. Prepared to send our dearest Angie home in a befitting ceremony. I started to pack things up as customary for every trip to Nigeria and I found myself crying, because for once I would not be leaving any package for her. Instead, the package was for her daughter. Almost immediately, I heard a voice say, it is fine. The voice was distinctively hers. I heard her say Osodieme. You didn’t have to. I felt a warm embrace almost immediately. Her spirit is everywhere, even now as I write this. The outpouring of love has been enormous. Some have booked Catholic mass in her name. Others have planted trees. Many she never met. Yet, I am sure she knows she is loved. We weren’t prepared for her death. It still feels surreal to see us preparing for her burial. She was just here, we spoke too, and she assured us that she was getting better. Not hearing her voice is painful. Knowing she is never coming back is equally painful. I imagine we all have to leave one day. I know that we may not all leave like the 90 year old lady. But when we do, may we have some form of preparation, and if lucky, filled in our own green folders.
We never got that with Angie. The closet we came to preparations was the week before she died. The fast thinking from my Zobam and I to send mama home, still keeps me speechless. We acted as if we had one day. I prayed Angie would last for one day so to at least see her mother. We got a week. The week before Angie died was all we had to bid her farewell, was all we had to truly prepare. I wish we spent the last month with her preparing for her death and not wishing we could change the course of events. But then again, the 90 year old could say all she needed to say, including the need for no heroic measures because she has access to health care.
In places like Nigeria, cancer, even those as easy to prevent or treat like cervical cancer remains a death sentence. We may not have prepared for her death, but we are prepared to build a legacy in her name, where no woman would have to go through what we went through. I have no idea how we would do this, Angie, wherever you are. But I know even your death is not in vain. For you, Zz we will keep fighting, beyond this week, to get to the bottom of cervical cancer. We may not have prepared for your death, but we are prepared for your legacy. It truly matters now more than ever.
A tree planted in Angie name. A step towards building her legacy.
We released butterflies in the air the Sunday before she died. Our neighbor invited us over to their home to release the butterflies they raised. It was our first Sunday without mama, our first Sunday full of despair, full of grace to bear all we knew we had to do to. Angie had woken up after-all. There was hope, though we feared the end, dared the end, even as we tried to bear the end. Her breaths were shallow. The end was near. She saw mama. She spoke when mama spoke and cried when mama cried. It was all to much to bear, to much to see, the rare sighting of the end. Cancer had the upper hand. The tumor had spread, but our God was more than any spread, even could outspread. So we stayed close, reliant on his word for what God cannot do, does not exist. We screamed it for anyone who cared to hear us. We remained confident, hoping she would defy the odds, hoping even for hope itself. It was in these desperate moments, that our neighbors pierced through and reached us in our despair, stroked us with care, as if to dare death and all it leaves behind, the tears, the sorrow, the never ending pain, we are all forced to bear.
It was in this moment that my neighbor saw me, saw us and asked if we would like to bring our kids over to release the butterflies they were raising. From the depths of our sorrow, the depths of our souls we said yes. When you release butterflies, you release fear. We learned so that afternoon. You also release love which opens its wings and spreads out to the skies.
Nothing is taking for granted. The fluttering of wings, the uneasiness, the missteps, the tensions, the fear, all of it disappears, the moment butterflies fly, the moment you choose to fly, the moment you choose love. We choose to fly that afternoon. We choose to release all that weighed us down since this ordeal began. We choose love too. We loved and desperately wanted Angie with us. We knew heaven loved and desperately wanted her too. Every butterfly stepped out in fear, but moved with easy, the moment they took their first step, moved in love. We stepped too in fear, in love. Death was knocking. Ready or not. We were blocking. Hands up in protest all summer. Death knocked louder. We kept blocking, until the week before she passed. We stepped out into the field and one by one released butterflies. One by one, each butterfly helped us release Angie, to a place of love, a place of peace, a place for us to release our fears. Keep releasing butterflies whenever you can. I was so moved by this experience that I wrote a short poem after we returned home that day. It’s called ‘When neighbors release butterflies.’ See it for the first time below.
When neighbours release butterflies,
They release love which spreads and flies.
They begin by welcoming you to their home,
To their gardens full of sunflowers which feeds their butterflies.
They show you their larvaes,
Tiny little larvae’s munching through leaves.
You will see their milky weeds,
With tiny little larvae’s still munching through leaves.
You will see their caterpillars,
Big brown caterpillars now crawling through leaves.
You will see a net filled house full of chrysalis,
Tiny green chrysalis hanging around the nets.
You will also see caterpillars on the nets,
Big brown caterpillars slowly building their chrysalis.
Then they will show you their butterflies,
Twelve brown and orange monarchs spreading their wings.
They will place the monarch on your open palms,
The monarchs spread their wings open and are ready to fly.
You’ll hold the monarchs tightly in the palm of your hands,
And watch as they discover how to fly.
So that when neighbors release butterflies,
Through you, they release love which spreads and flies.
August has been a whirlwind month. We are still making sense of this month. Still hoping that we would wake up from this dream. Still asking questions. Still wondering why. Still confused as to how we got here. Still wishing we never got here. Still hoping for all this to go away. But most of all still wishing Angi was here with us. Today marks two weeks since she left us. My husband still has questions. I have some too. We have no answer, no way of getting to the bottom of our ordeal and this is the most difficult aspect of it all. To think we could have saved her if we knew on time. My sister should be alive is all he says. I agree is what I say. We know that our questions will never fully be answered. Still we ask them to ourselves, to each other, to remind ourselves that no woman, no girl too we know, or don’t even know should ever go through this ordeal again. It’s our mission. One we hope to share with the world, to make sure we get to the bottom of cervical cancer. We can end it. We will. We were encouraged by a card we receive in the mail today. A perpetual Catholic mass card in Angie’s honor. It came today, exactly 2 weeks. We are motivated. Our fight will be perpetual too.
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