2017 was a year of which dreams are made. I got married to a wonderful man, Chidi, and had an uneventful pregnancy, which led to the
birth of a beautiful, healthy son, Emmanuel, at the end of November.
The blessings continued into 2018 when I received a promotion for which I had been longing for over 5 years. 8 months later, I received the job of my dreams at Booz Allen Hamilton. I remember thinking to myself, “is it really possible for anyone to be this happy.” And then disaster struck, a terminal diagnosis of ALS.
Having studied neuroscience as an undergrad, literally the thing I feared the most was upon me. Up until three months after my diagnosis, I cried in secret every day. I cried in my car during my lunch break at work. I cried in the parking lot of the CVS after picking up my Riluzole prescriptions. And on my birthday in November 2018, after sobbing uncontrollably in a hair salon, I decided that was the last day I would be consumed by fear.
I received a Brigance Brigade Foundation PALS Grant for caregiving services. I am still working due to the generous accommodations by my employer, but private insurance doesn’t cover personal care and I am currently ineligible to receive Medicare. My family has been paying out of pocket for an independent contractor to assist on an ad-hoc basis when we have extra cash on hand.
My husband postponed his plan to enroll in school full-time so he can stay home and take care of me full-time. The disease has taken a tremendous toll on my family financially and emotionally with caregiving being our biggest expense and source of strain. The PALS Grant has provided my husband with much needed respite and helped our family to wipe some of our tears.
I believe that, like plants who use the winter dormancy to put their houses in order, breaking down and remaking proteins and maintaining cell membranes, this is the season of contemplation and regrouping and soon my health will be in full bloom. I don’t know if it will be from a medical procedure funded by people such as yourselves or supernaturally. All I know is that I am thankful for your continued support, to people like me who may be experiencing the worst winter our lives, it is a warm hug.