As I listened to her story I kept thinking, “You can’t make this stuff up.”
Or at least no one would want to anyway.
The first time I met Adeola was at the opening meeting of a Rare Disease Conference. She looked like a tiny mountain of pink in a sea of grey flannel as she floated by me in her jilbab. She was not your ordinary Washington DC lobbyist.
We were there to shed light on the 10 million plus people in the U.S. diagnosed with a rare disease, including both myself and Adeola. If you add in those undiagnosed and caregivers who are also affected, almost a quarter of our population is dealing with a rare disease – 90% without treatment. It’s a silent crisis that’s crippling our country and worth a voice in Washington. Adeola was reserved. I watched her as she soaked in the room while trying to fade into the background.
I imagined blending in was hard to do for a Nigerian Muslim woman, living alone in Shreveport, Louisiana, with an incurable autoimmune disease.
As someone who also has the same condition as she does, I can understand how difficult it can be to ‘fit in’. Myasthenia gravis, a neuromuscular autoimmune disease that can cause facial and eye drooping and the inability to smile, is hard to hide. Although she was trying her best, I could feel her shrink as she boldly put her best foot forward.
Her willingness to share her journey helped me to see her strength, as well as her loneliness in a country foreign to her. I’ve always been inspired by the human condition, but every now and then, I hear a story that elevates the word courage to the next level. Hers was one of those stories that was very much worth sharing.
Me: I’d love to get to know more about you, but first I have to ask, how did you get diagnosed with myasthenia gravis in Nigeria? Are there many of us there?
Adeola: Healthcare is very different in Nigeria and can be challenging to navigate. I saw the need and wanted to help care for others, so I went to medical school. While I was in my studies, I started having strange symptoms that weren’t going away. I don’t have medical insurance much like most in Nigeria and didn’t have access to anyone who could help me. I dug into my studies and started researching my symptoms myself. I came across MG and it seemed like a fit so I discussed it with one of my professors. She recommended trying Prostigmin, a drug that can help with the symptoms of myasthenia to see if they symptoms would improve and I did.
Me: So you diagnosed yourself? That’s impressive. I bet the others with MG that live there take much longer to figure it out.
Adeola: Actually I don’t know of anyone else with the disease in my country. If they have it, it is mild and they are typically undiagnosed. If it is exacerbated, most die untreated.
Me: Oh. I’m glad yours wasn’t a bad case then.
Adeola: It wasn’t at first but got much worse. After a little time, the muscles in my chest weakened so much so that I couldn’t breathe. My husband rushed me to the hospital but they only had one ventilator and it was being used by someone in the ICU. There is no one to take care of me there and no medicine to make me better. My husband was left on his own to figure it out in our car, so he started CPR to keep me alive since I couldn’t get enough oxygen to sustain life.
Me: Yikes! What happened?
Adeola: He kept going and going for over 5 hours. He never gave up on me even though I was tired of fighting. I told him to stop and just let me go but he wouldn’t do it. We had a baby at home and he said he wasn’t going to give up on me or our family and told me I needed to fight for my life just like he was fighting. Eventually the ventilator became available and I was admitted.
Me: Do I even ask what happened to the patient that was originally on it?
Adeola: Unfortunately, he died and I guess I was next in line for it. That’s how it is there. We just don’t have enough resources for everyone.
Me: What turned your health around? You seem pretty strong now.
Adeola: We both knew that if I stayed in Nigeria I wasn’t going to survive. Also, there is a lot of superstition there. My mother was upset with me for getting sick and said that I was bringing bad luck to my husband. My 12 siblings didn’t understand my medical condition either and the criticism wasn’t helping me get any better. He knew he had to get me out of that environment in order to survive, so he sold everything he had and bought me a ticket to America. That way I could get the real treatment I desperately needed.
Me: I’m glad you are feeling better now. Did you go back home when you were strong again?
Adeola: Yes and for a time I was better. Then I got pregnant with our second child. During my first pregnancy, my disease went into remission, but the second one made me much worse. When I was 26 weeks along, I went into crisis again. The doctors told me I had to make a decision. If I continued my pregnancy they said I would probably die but the baby would live. If I had the baby at 26 weeks, the baby would surely die but I would live. There were no incubators at that hospital or ability to care for a preemie. I had to choose my life or the life of my baby.
Me: That’s a Sophie’s Choice moment. You probably have no idea what movie I’m talking about but I can’t imagine ever having to make that decision.
Adeola: Neither could my husband. So he borrowed money from anyone that would loan him some and bought me another plane ticket to America where we both could be properly cared for. She had some developmental issues at first but is doing great now. As soon as we were both strong enough we went home to our family.
Me: So how did you end up in Shreveport, Louisiana then?
Adeola: It was getting harder and harder for me to stay well in Africa. And people were distancing themselves from me even more because they thought my health issues were coming from a dark place. I didn’t want to leave my family behind but my husband and I both knew I wasn’t going to make it in Nigeria. So I applied to schools in America to study Public Health. I was accepted to a school in Louisiana with a grant. We knew people who knew people that lived there and I stay with them. I sleep wherever I can.
Me: How were you received in the deep south?
Adeola: I think of the saying, ‘When you know better, you can do better’ a lot. Many people there have never been outside of their hometown and don’t know many people that don’t look like them. I feel like it’s my job to show them that a black, Muslim woman that dresses and looks very different on the outside is still the same as they are on the inside. It doesn’t take long for them to figure that out most of the time.
Me: Is it hard being away from your family?
Adeola: I get homesick. My husband couldn’t get his visa renewed due to all the restrictions now, so he can’t come here to be with me. If I go home, I’m afraid I will die. So for now, we have to live apart. I am on a student visa, studying as hard as I can and living life one day at a time.
As I take in my new friend, I wonder how many other people walk by us each day with stories of bravery that we will never know. The human spirit should never be underestimated. Facing perilous odds in the life-threatening moments defines who we are at our core. Adeola’s core is true grit sprinkled with a little stardust. We can all use more of that.
About the Author: Lisa Douthit is the author of Amazon’s #1 bestselling book, Wellness Warrior – Fighting for Life in Fabulous Shoes and an Integrative Health Consultant who is passionate about healing from all perspectives. After struggling with multiple bouts of cancer and autoimmune disease, no one understands the physical, spiritual, and emotional rollercoaster better than she does.
As one of the 40 million American women currently suffering with an autoimmune disease, she made it her mission to have a voice for all those with an invisible illness that cannot, as well as share the understanding of lessons she learned to help us all feel and be better. She has a private Facebook Group called Wellness Warrior Tribe for all those with chronic illness looking for support and encouragement. For more out of the box thinking that is guaranteed to bring you joy, Like her Facebook Page here or join the tribe here.
