Written by Alaina Haggerty

At the end of February 2020, a close friend, who is a nurse practitioner, was visiting me for the weekend. Before leaving, she asked me to visit my primary care doctor because she noticed a very slight droop in my smile. I didn’t think much of it but listened and scheduled an appointment the next day. I was a little confused when my mom insisted on joining me as I was working and living in Manhattan at the time. I always enjoy spending time with her so why not grab coffee with her before the appointment? I didn’t know yet, but I would be very grateful that she joined me that day.

Originally, my primary care doctor diagnosed me with Bell’s palsy. Just to be safe, she asked me to go to the emergency room for confirmation. At the ER, after having a CT scan, I was informed that it was a stroke, not Bell’s palsy. After being admitted to New York Presbyterian Hospital, I received multiple tests as well as an MRI. The next morning, I had a neurologist come to my hospital bed. He informed me that a stroke had been ruled out and that the new possible diagnosis was Multiple Sclerosis. I was scared, but with my father having the disease, I knew that I was in safe hands.

And yet, the neurologist could not guarantee that this was the correct diagnosis. Therefore, this began the hunt for confirmation of a diagnosis. The only thing that I knew at this point was that the MRI had shown “white matter” in my brain, but no one could figure out what it was.

I spent the next four months on different medications. Every possible diagnosis was slowly being ruled out. At the end of June 2020, the only thing left to do was to biopsy the “white matter” that was showing up on the MRI scans. I had a craniotomy on July 2, 2020 and one week later I was officially diagnosed with Grade IV glioblastoma.

I should note that all of this was taking place as the world shut down due to Covid-19. (The first patient with Covid was admitted the same night that I was admitted to the hospital). Therefore, doctor appointments and surgery were all being performed with minimal to no family support. I do not recommend having to wake up after a craniotomy with no family there. All communication had to be done via FaceTime.

It has now been five years since my journey began. I have lost the function of my right arm and leg. I use a cane and wear a leg brace to help me get around. For longer distances, I depend on someone to push me in a wheelchair

Throughout it all, I have been living my life with the support of my amazing family and friends. My husband, Chris, has been my rock and the best caregiver that I could ever ask for. I do not know what I would do without him. I wish there was a way to repay everyone for their generosity and love.

I don’t like to call this diagnosis a battle. Instead, I like to believe that it is helping me understand the importance of love. I can’t say I have fully accepted this diagnosis. I’m not sure I ever will. But what I do know is that I have learned to be grateful for every day and to make sure I tell those close to me that I love them. Every single day.