Sheila Johnson is a courageous woman who has been battling Metastatic Breast Cancer (MBC) for 13 years. Her story sheds light on the underrepresented MBC discussions within the Black community and the urgent need for action to end breast cancer-related deaths.
BlackDoctor.org sat down with Johnson to discuss the motivation behind the creation of her remarkable upcoming film, “God’s Grace, The Sheila Johnson Story,” a narrative that unfolds her personal struggle with breast cancer. Johnson shares the challenges she faced while translating her profound experiences into a compelling narrative, the pivotal moments the movie will highlight, and the profound message of faith, grace, and resilience that she hopes viewers will take away from her powerful story.
Johnson’s unwavering determination to make a difference in the fight against breast cancer, combined with her deep faith and unshakable hope, serves as an inspiration to all those facing similar health battles, reinforcing the importance of unity in the face of adversity. In honor of Breast Cancer Awareness Month, Johnson’s story emerges as a beacon of hope, rallying communities to ask the tough questions, seek support, and advocate for change, for as she eloquently puts it, “When one wins, we all win.”
Can you tell us more about your upcoming movie, “God’s Grace: The Sheila Johnson Story”, and what inspired you to share your breast cancer journey through this film?
I’ve always wanted to share my story with a broader audience because I feel there are not many conversations had about Metastatic Breast Cancer in the Black community. I did say 13 years ago to God that there will be a movie about me. At that time, the statistics of someone living with MBC was only three to five years and then after 13 years of living with this disease, I knew something big would happen. I just want to help people understand my journey and so many others who are facing breast cancer. I want women to get their mammograms and perform their self-breast exams but I also want women to know they are never alone while facing breast cancer. There is a whole support system out there waiting for you with open arms.
I also don’t believe there has ever been a movie about MBC in Black women. So my movie will really give a whole different level of understanding of the urgent action needed to end breast cancer deaths.
What was the most challenging aspect of translating your personal experience with breast cancer into a compelling narrative for the movie?
The most challenging aspect for me was trying to tell 13 years of my story in one hour and 40 minutes while also making sure to hit all the important aspects of my story. Finding out and the acceptance was the hardest but also not knowing for nine months that there were support groups out there for me, so I basically didn’t have the support I needed. I mean this to say support from women who had the same diagnosis, and I certainly didn’t know any women with Stage IV breast cancer. The only two people I knew who were Black with breast cancer were my mom and myself. I was diagnosed at 43 and that was really challenging being diagnosed so young.
In the trailer, we see glimpses of your journey. Can you share some of the key moments or turning points in your battle with breast cancer that the movie will highlight?
I love the trailer. It’s absolutely amazing how it was all put together. I haven’t seen the movie let me first say this. I’ve only seen the script and I was on site in Atlanta for one day for filming. Looking back I’m kind of glad it happened that way because I want the element of surprise like the viewers.
What message or lesson do you hope viewers will take away from “God’s Grace: The Sheila Johnson Story”?
The biggest lesson I want viewers to take away is – I guess there are many. I think the most important one is “take care of your breasts.” Know what normal feels like. Know your body and know yourself. And no matter what life challenges you have, the universe has your back. His GRACE is sufficient.
The movie’s title suggests the importance of grace in your journey. How have faith and spirituality played a role in your healing process?
My mom’s name is GRACE and I wanted to tie in her journey with MBC as well. My mom Grace Eveyln Johnson died in 2004 of MBC that spread to her lungs, and I received my diagnosis in 2009. My FAITH has played a very important part in my healing process. I truly don’t think I could make it each day or have made it this far without God’s Grace and Mercy. I’ve learned to lean on
my FAITH for strength. Matthew 17:20 “Faith of a Mustard Seed” It is not easy to have the FAITH of a mustard seed, especially when progressions happen. I just had a recent progression this month where I have a pathological fracture in my neck and shoulder. I had to activate my FAITH and lean on GOD to get through this chapter. I will have to have radiation for a week so right now not only am I preparing for this movie, but also preparing for radiation and a new chemo change. I will continue to praise GOD despite of.
Can you discuss your experience working on this project and collaborating with the team to bring your story to the screen?
I want viewers to keep an open mind about the movie. Of course, some scenes are dramatized because guess what it’s BET. Demetria McKinney plays me, and she sings. I can’t sing at all. I’m not going to give away other scenes but look and absorb the message and ask yourself what did I learn and what can I do better for my health and well-being? You might look and say well that’s not right or this wasn’t right. Overlooking all that what was the message of the movie and how will it impact your life and your interaction with your doctors. Charmin Lee is the director, and she is phenomenal. I went for a day in Atlanta for filming and everyone was so nice and gave me space to absorb everything – even to cry and hold dear the movie to my heart. It was an emotional day because I was literally seeing parts of my life played out on a set. Michael Beach plays my dad and that was emotional seeing that. I lost my dad in January 2022 and my dad was literally there for me from the beginning of my diagnosis until his passing.
I often laugh because if I told my story just straight forward it would probably be boring because I had the right medical team and everything just lined up. But not many Black women have that and face racial disparities and biases when it comes to their care. I wanted viewers to see that aspect as well while also speaking for women who have had those bad experiences.
From Gut Punch to Grace: A Breast Cancer Story of Survival
my FAITH for strength. Matthew 17:20 “Faith of a Mustard Seed” It is not easy to have the FAITH of a mustard seed, especially when progressions happen. I just had a recent progression this month where I have a pathological fracture in my neck and shoulder. I had to activate my FAITH and lean on GOD to get through this chapter. I will have to have radiation for a week so right now not only am I preparing for this movie, but also preparing for radiation and a new chemo change. I will continue to praise GOD despite of.
Can you discuss your experience working on this project and collaborating with the team to bring your story to the screen?
I want viewers to keep an open mind about the movie. Of course, some scenes are dramatized because guess what it’s BET. Demetria McKinney plays me, and she sings. I can’t sing at all. I’m not going to give away other scenes but look and absorb the message and ask yourself what did I learn and what can I do better for my health and well-being? You might look and say well that’s not right or this wasn’t right. Overlooking all that what was the message of the movie and how will it impact your life and your interaction with your doctors. Charmin Lee is the director, and she is phenomenal. I went for a day in Atlanta for filming and everyone was so nice and gave me space to absorb everything – even to cry and hold dear the movie to my heart. It was an emotional day because I was literally seeing parts of my life played out on a set. Michael Beach plays my dad and that was emotional seeing that. I lost my dad in January 2022 and my dad was literally there for me from the beginning of my diagnosis until his passing.
I often laugh because if I told my story just straight forward it would probably be boring because I had the right medical team and everything just lined up. But not many Black women have that and face racial disparities and biases when it comes to their care. I wanted viewers to see that aspect as well while also speaking for women who have had those bad experiences.
October is Breast Cancer Awareness Month. How do you hope this movie will contribute to raising awareness and supporting individuals and families dealing with breast cancer?
I call October Breast Cancer Action/Awareness Month. I live this disease every single day of my life and have been living it for 13 years. December 2, 2024, will be 14 years of living with this disease. I want more money for research, I want more lives saved, I want my friends to live longer and I want my daughter to never have to worry about hearing those words. Hearing the words “You have breast cancer” is so powerful and overwhelming and when I heard them it felt like a gut punch. I hope that viewers will go back to their communities and ask the hard questions and know the statistics of breast cancer in their pertinent communities. I want women to ask the hard questions to their doctors about breast cancer. I want women to know what having dense breasts means because I had dense breasts. I just want my story to give hope and so much LOVE. I want viewers to feel the love that I was vulnerable enough to share my story but also help GOD save lives. I’m just his LOUD mouthpiece. I will do whatever I can to help my community and get the necessary resources into the Black community to end the statistics of the high mortality rate of 42%. It’s been 13 years and that statistic hasn’t changed.
What advice would you give to others going through a similar health battle, based on your own experiences and the themes in the movie?
My advice would be to breathe and to know there is HOPE. For me living with MBC, HOPE is all I have and it’s a marvelous thing to have that. HOPE is what gets me up in the morning and prepares me for the days ahead, especially treatment days. There is no right or wrong way to fight breast cancer. We must do what we can with the information we have. If you feel uncomfortable about something, always seek to have a second opinion. Ask your doctor about clinical trials. Keep a journal and please know what type of breast cancer you have. Also, you are not alone. We are in this to WIN it.
My motto about this movie is “When one wins we all win.”
“God’s Grace, The Sheila Johnson Story” begins streaming October 19 on BET+
