Ashley Jacob the Host and Executive Producer of Tsuris Podcast shares the awe-inspiring story of her own family that has taken her on this journey to discover the beauty in adversity
My mother changed my life and in turn, I changed hers.
I had always been a writer and it had always given me a deep sense of gratification to help others. But it’s because of tragedy that my innate talents surfaced. And it was because of this shared dynamic between mom and I that gave to us the biggest gift of life; one we couldn’t possibly imagine.
It was in 1997, only a couple of summer's had passed after my father died, when my mother started having subtle flares with her eyes. This attack placed us in a world with a host of problems and left us all questioning what had happened. This led to my mother's quest for answers, but during this time the Doctors could only label my mother's diagnosis as Optic Neuritis. And so, she controlled her symptoms with prednisone for many years.
It wasn't until 2010, when my mother was actually diagnosed with a rare autoimmune disease called Neuromyelitis Optica (NMO), also known as Devic's Disease. And it wasn't until 2006 that the Mayo Clinic researchers actually developed a test to aid in the diagnosis of this disease, by detection of an NMO-igG antibody in the blood. This was a bittersweet diagnosis; we finally had an answer but it wasn't what we wanted to hear. We learned that the likelihood of recurrence of disease activity was greater than 90%. This meant, my mother was susceptible to repeated and rapid attacks; attacks that could damage her optic nerve and spinal cord. We also learned, about 50% of those diagnosed with NMO are dependent on a wheelchair and functionally blind by 5 years. We later learned that Doctors understand very little about how to properly treat this disease, which led us to question if the concept of remission even exists.
This Doctor who diagnosed my mother also changed my mother's treatment plan. Undergoing these changes, my mother went spiraling downhill fast. She temporarily went blind and experienced paralysis down the left side of her body. As we were trying with this newfound reality, my sister and I would confide in one another about which was worse, to go blind or paralyzed. That conversation ended without a definitive conclusion and we had no clue that times were about to get worse.
I had not advocated for my mother's health until things really started to unravel. So, I challenged this Doctor and helped my mother transfer her medical records to yet another Doctor who I thought would handle her case best. But only days later, my family and I watched my mother experience, by far, the worst attack. This last attack left my mother comatose and paralyzed from the neck down.
Those days were some of the worst of my life. I watched my mother learn how to talk, raise her arms, move a finger, swallow liquids, chew food, hold a fork, hold a cup, urinate, and excrete waste all over again. My mother and I embraced this hardship and we grew closer because of it. The handheld stares, the silence between our naked eyes, and the newly created bond will forever be stained in my mind. Some people don't experience life at that depth so I felt if we were lucky at all, it was because of those shared moments. These were the moments that sparked passionate writing for me. It became cathartic for me as I wrote my way through pain. And so, I began to fight back with my words. It all started with a poem:
The doors shut behind as another day closes in
I look to the moon for brightness down our dimly lit path
As I steadily walk my narrow carved out line
I can't see the world around nor do I even try
Their mouths move but I can't hear a thing
They look young in life, untouched by tragedy
You see my heart; it’s buried in you
And it becomes disfigured when you don't seem whole
So, that same sad tune keeps playing my mind
But my illusion continually molds around yours
I'll never stop teaching you, you say
And I'll never stop fighting, for you are my inspiration
We look into each other’s eyes without one blink
The silence is telling with all thoughts exposed
We find comfort in this moment, as our love stands strong
And with our stare, we tell each other
Just how lucky we really are
Simultaneously, I chose not to accept conventional, conservative medicine as ongoing treatment for my mother. This led to my research of other trials, one that proved to be successful. My mother made the decision to pursue this treatment and will complete her Hematopoetic Stem Cell Transfusion (HSCT) this fall of 2015.
My mother and I built a new life around this tragic event. My mission turned to saving her life, and at the same time it transformed into an artistic platform for which I hope will help to serve as a support group for everyone. While my own real-life experiences have made me sensitive to an understanding in life, that there are blessings found in our troubles, I hope this message will live on in the lives of others through the stories I tell.