A Heart that MatterS: Interview with Teresa Wright-Johnson

Teresa Wright-Johnson is an MS warrior and a Congenital Heart Disease survivor who has channeled her experiences into advocacy and has worked as an author, poet, inspirational speaker and a community activist. One of the members of our Editorial Team here at MultipleSclerosis.net reached out to Teresa to interview her about her amazing journey. Her strength and perseverance combined with her faith are traits we see each day in the MS community, and we wanted to highlight her story and share it with all of you. Read more to get to know Teresa!

Born with a chronic illness

Alina: You were born with a heart murmur and an aortic valve defect and needed many heart surgeries and procedures. How did those experiences as a child shape you?

Teresa: Having these conditions literally broke my heart and opened it at the same time. I had my first open heart surgery at the tender age of 12. Prior to that, there were several tests, limited activity, procedures and consultations with my physicians and medical staff. Frequent doctor visits caused anxiety as I aged with illness and began to ponder my mortality. Congenital Heart Disease compromised my self-esteem. I felt “different” for most of my life. Post open heart surgery, I had a large scar in the middle of my chest that demanded attention. Many people would stare, and a few so-called friends abandoned me. My parents provided a strong foundation, spiritually and physically. My home was my solitude and a source of acceptance. It was the place where I felt loved unconditionally despite the pain and angst that accompanied illness. My parents armed me with the tools needed to fight chronic illness, which were faith, family, perseverance, listening to my body and getting proper medical care. I couldn’t fully ingest this as a child. Today, the message is clear. Having Congenital Heart Disease prepared me for the ultimate task, which was the journey to knowing and loving myself which began the first day of my life.

Receiving an MS diagnosis on top of Congenital Heart Disease

Alina: When you were diagnosed with MS in 2014, how did your past with congenital heart disease impact how you coped with the diagnosis?

Teresa: My past with Congenital Heart Disease significantly affected my ability to cope with my Multiple Sclerosis diagnosis in 2014. Heart Disease introduced me to chronic illness, and it revealed that I was here for a reason. Long ago, no one knew the trajectory of life for a child with CHD aging into adulthood. Treatment was based around the “watch and wait” theory. As I grew older and witnessed the obstacles that I overcame, my spirit grew stronger. I realized that I did not survive multiple open-heart surgeries by accident. I conquered most of the odds by an intentional existence. Receiving my MS diagnosis felt earth-shattering, yet at the very core of my being I knew that I was all in. I vowed to fight this battle as spiritedly and ferociously as I did heart disease. It must be stated that coping with disease is an ongoing process. It is not something that is overcome. It is a conscious effort of caring for yourself and taking the time you need. It is knowing that courage is sometimes quiet and that strength comes from within. Heart disease made me a survivor. Multiple Sclerosis makes me a warrior.

MS is a disease that takes a village

Alina: Many people say that MS doesn’t just affect the individual, but it affects the whole family. How did your family react to your diagnosis?

Teresa: Multiple Sclerosis does not just affect the individual. It is indeed a family disease. I recall the moment my diagnosis was received. Hearing my doctor say “You have MS” forever changed my life. My husband was present, and I saw fear and devastation in his eyes. We told my parents the next day. I will never forget the look in their eyes to know that I have fought so long and hard for my life. Eventually, my siblings, nieces, nephews, and other relatives were told. Every day of my life is different. My emotions fluctuate, my pain is unrelenting, and the fatigue is something I cannot explain. Multiple Sclerosis is a disease that takes a village. It is my family that strengthens me and encourages me to fight. It is my family that holds it together when I am falling apart. It is my husband that sees the unsightly moments and chooses to acknowledge the intrinsic beauty and character of the person he married, not this ugly disease that pilfers something daily. It is difficult for families to see their loved one struggling with the many issues that accompany disease. Families learn to appreciate the good times, forge ahead through the difficult ones, and hope for the future. Family support is paramount in coping with MS and so is self-care, not only for those diagnosed, but for support partners and all affected. Illness can be traumatic, so it is imperative for families to allow and discuss their feelings. It is important to seek help if needed, individually and as a family.

Finding a new purpose after illness and injury

Alina: What inspired you to share your experiences and begin work in advocacy and telling your story?

Teresa: Sharing my story and using my platform has become my life work. The seed was planted years ago. My parents were humanitarians and set the foundation for a life of service. I have always had a desire to help others. That desire was emboldened as the course of my life changed. Some years ago, I was injured in the line of duty. This injury, which occurred during the apex of my career, resulted in an early retirement and a life of chronic pain. I was traumatized as the entire trajectory of my life changed. My “purpose” was called into question as I sincerely thought I was “chosen” to do this work.

My husband witnessed the grief and displacement I felt and encouraged me to volunteer and share my story. He said, “Someone needs to hear your story.” I took his advice and contacted my local American Heart Association. I began volunteering with them and was asked to share my story of hope and survival at a luncheon. This was one of the most pivotal events of my life. Hearing my voice and my story empowered others, and it reminded me of my strength and endurance. Once I acknowledged my voice and accepted my truth, I knew that I could no longer be silent. Four of my siblings (one before my birth) are deceased. I am the youngest child who most did not expect to survive. Yet, here I stand, a vessel of hope and inspiration. I speak for my siblings and so many others that no longer have a voice. I speak for those who have not yet found their voice. I speak for those who need to know they matter, and they are not alone. I know my life has been spared to inspire others. All roads have led me to this moment in time for this work. I cannot stop until my time is up. My invention was with intention and I am truly A Heart that MatterS. I am comforted in knowing that my advocacy efforts will outlive my human existence.