Photos by Heather Nash
By Kristen Domingue
The Brick cover-story articles are most often written by the interviewee as responses to our questions. The interviewee sends her answers to me for review. I then edit the article to create a clear story arc and narrative resonance before passing it to our editor for final review.
Never have I worked on an article that moved me to tears. Sadeepa is living with Wilson’s disease, which impacts her verbal and written communication skills. However, you can see for yourself that despite the challenges she faces, she’s of “sound mind,” even more so given what she’s had to overcome to be where she is today.
This reminded me of an invaluable insight that we all learned in elementary school: never judge a book by its cover. Just because someone looks or sounds different doesn’t mean they aren’t just like us. They constantly search for the strength to keep going in their version of our battles.
While some of us have more complex battles than others, the inner fight to live a life that has meaning and makes a difference is universal, no matter what we have to overcome to get there. We all want to know that we matter. And Sadeepa’s life is a testament to the fact that we do, in fact, matter.
Little Girl, Big Dreams
Growing up as a girl in Sri Lanka, I wanted to be a doctor (a gynecologist specifically). Whenever a family member was wounded or sick, I was there with the first-aid kit to care for them without hesitation, with no fear of catching their illness. Thankfully, I knew from a young age that caring for people brought me joy because my soul was content choosing love as my motive to serve.
In pursuit of that dream, I applied and was admitted to the University of South Alabama Biomedical Sciences Program. I left home and my life journey in the United States began as an international student. My mother taught me that if I ask God for my hearts’ desires with good intentions, He will listen and grant me what I need.
One year after coming to the US, I almost lost my life due to an unforeseen health condition. The life events that took place thereafter were full of excruciating pain, hardships, and struggles that my family and I went through together. At the time, there were only two institutions in the US that treated Wilson’s disease, and being an international student only made getting treatment harder.
[Editor’s note: Wilson’s disease is a rare inherited disorder which causes too much copper to accumulate in the brain, liver, and other vital organs.]
Despite the diagnosis and ensuing challenges, the things my mother taught me as a girl stayed in my heart: if I ask God for my heart’s desires with good intentions, He will listen and grant me what I need. Throughout the long process of getting a diagnosis and finding the right treatment, I clung to my childhood dream of serving the sick even more than I had before.
As a result of great persistence, courage, and hope, today I work for the Office of Research at the University of Michigan’s Medical School. I’m a part of their clinical research team.
The Diagnosis That Changed My Life
When I left Sri Lanka to pursue my dream of becoming a doctor, I was able to score high enough to make the Dean’s list and President’s list in my first semesters in college. As a young girl who had never been alone without her parents’ guidance or protection, I found being in a foreign country to pursue my dream, making new decisions on my own, and adapting to a very different culture very daunting.
After one year excelling in my studies, the symptoms of Wilson’s disease began to surface. I went from walking to losing my balance (I couldn’t walk without assistance), from eating to drooling like a waterfall (without being able to consume anything by mouth; I lost the ability to swallow or talk). After three months of testing, I was diagnosed with Wilson’s disease and learned that the inability to excrete excess copper from my body was the root of the problem. I know — it would have been awesome if I produced gold or platinum right? Nope. It’s just worthless copper.
Thanks to God and my brother’s research, I was admitted to the University of Michigan’s hospital for a 45-day research study which gave me my life back. But it was really hard. The 45 days were spent in pain with very little sleep. I had a nasal feeding tube and a PEG tube to take in nutrients since I couldn’t eat (the risk of choking was too high). I had to learn to communicate with my family and with the nurses and other health care providers who cared for me in a new way. It was this research study that literally saved my life.
My family had a hard time watching me in pain and suffering; in a way, we went through it together, even though I was the one with the disease. I kept holding on to my faith because I knew God was still listening to my prayers. Even though I lost all capacity for basic functions, my loving parents and my loving brother never let me go.
I’m blessed to have a loving family. My brother took care of my immigration paperwork while I participated in the research study. He and my parents still support my vision and dreams. We now have a community of friends and family in the US who supported our ability to stay together (which we needed because the strict immigration laws made this very challenging).
Personally, I’ve needed lots of help to keep going; I had to learn how to adapt to every situation that life brings with an accepting heart. This was a realization and it took practice. It’s not the easiest path to take when your body does not want to cooperate with what your brain wants to do or what your heart desires. Lots of determination, persistence, and planning each day to be active, healthy, and make personal connections with loved ones — this is how I get through it all. I’m very grateful I have a strong support team to help me.
Coming Back Different, But Stronger
When my year of absence from college came to an end, we met with my academic adviser about continuing my bio-medicine studies. However, my dream was discouraged due to my inability to perform the extensive laboratory work required to become a doctor (I had fine motor deficits from the neurological dysfunction throughout my body).
After I was diagnosed with Wilson’s, I was told “no,” I couldn’t follow my dream by “skeptics of life.” After each “no,” I was discouraged and disheartened, but I knew my intention to care for the sick came from love. So after completing undergraduate school with honors, I looked into masters programs in medicine. At this time, even though my fine motor functionality and mobility had improved somewhat, I had limited physical ability and many complications.
So, I had to reroute my education and continue with a newly established plan. This plan had many challenges which impacted my life perspective, ultimately, for the better. I now had to consider many big questions: How would I keep up with stringent immigration regulations while battling a fatal disease? How would I communicate through my newly garbled voice with people at school, the hospital, or anywhere? How would I pursue my vision of becoming a doctor?
The Will To Try Again
I can now proudly say that I earned my Bachelor’s degree in Simulation, Animation, and Gaming and a Master’s degree in Clinical Research Administration in spite of a life-changing disease, in spite of physical pain, in spite of the injustice and discrimination I faced. I couldn’t have done it without my faith in God and His blessing for my life.
As I researched master’s programs, I had two priorities in mind: 1) pursuing my dream of caring for people and 2) extending my stay in the US to continue the lifelong treatment I would need (and wouldn’t have access to, if I returned to Sri Lanka). I had to figure this out quickly to meet my immigration deadlines.
In my search, I discovered the Clinical Research Administration program through the Office for International Students at Eastern Michigan University. I applied and was recommended for admission. This was perfect: I already had a lot of personal experience with research study participation.
Praying They “See” Me
Completing my master’s took a lot of determination and courage to prove that I am capable of success in my chosen career path. I was discriminated against because of my disability by academic authority figures and by prospective employers after graduation. However, my deep desire to follow my heart always kept me moving forward past these injustices. Also, having my family advocate for my rights has truly been a blessing from God.
It was in recent months that I secured my position at Michigan Medicine through what felt like a miracle. This is the institution that gave me a second chance at life with the life-saving treatment I received during the study I was part of there.
To arrive where I am today with my career, I had to stand my ground at times with patience, hope, and grit. I had to have faith that someone would see beyond the disabled body I possess; someone might see my true passion in the work I desire to do, someone might see the potential of my success through the life challenges that I’ve already overcome.
There were many rejections, but I kept moving forward because I knew the work would give me a deeper appreciation for life. Even though the challenges are never-ending, I accept them with open arms and see how it shapes me. Today, my dream of becoming a medical doctor seems so far away, but I’ve managed to follow my ultimate goal of helping the sick with the work I do professionally. This truly makes my heart happy.
The Impact Of Owning “Invisibility”
As a woman of color with a disability, at first, I was intimidated to share thoughts about my abilities in the classroom and workplace because I was afraid that I might make a mistake. But, then it dawned on me that all of us are human and none of us can be perfect (even if you do not have a disability). So I share more now because it’s not worth it to keep it to myself.
Also, the biggest secret (not a secret anymore) to my success is that I share my life — struggles and happiness — with my family and friends so that I don’t feel like I have to face it all alone. It helps me to know there’s someone else thinking of me, praying for me, and supporting me through the difficult times. In turn, I know this is can be a very gratifying gesture for my loved ones — just the act of sharing, praying, and being connected.
Every day of my existence has been a physical challenge and mentally daunting, but I know that someone is watching me overcome the challenges with a smile on their face because it gives them the encouragement to overcome their own battles in life. If I had advice for younger me (or anyone) it would be to always hold on to hope — never let that go away.
Sadeepa’s success is a touchstone for all of us about the importance of a few different kinds of faith: Faith in a higher power to help us when we need it most. Faith in ourselves to take one more chance after one more “no.” Faith in those who are different than us — that we might see who “the other” really is and choose connection over separation, potential instead of impossibilities.
AKristen M. Domingue is a copywriter, brand developer and messaging
strategist for startups and online businesses. She’s worked with
emerging and established businesses to define their message and
move customers toward purchase through building online funnels and
content marketing strategy. Her clients’ brands have been featured
in The Atlantic; The New York Times; O, The Oprah Magazine